Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Floral on October 22, 2023, 12:03:41 PM
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Dear ladies
Medichecks May past my Free thyroxine was 11.6
My TSH was fine 2.79
My T3 was ok at 4
They said to get checked due course with GP again which I did, but they only do TSH which was fine.
Anyone have any experience? Thank you!
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I’m sorry ladies but my anxiety is awful today and I’m so worried about everything🙁
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Hello Floral,
Despite having an under active thyroid myself I am rubbish at interpreting results. Hopefully someone will be able to shed some light on this for you.
In the meantime perhaps type thyroid into the search, as there are many women on here with thyroid problems and some are able to give very informative understanding on this.
and I do understand the anxiety you have, again, sadly many of us suffer with this to varying degrees. You aren't alone in this however crap you feel. There is help for anxiety of you feel you need extra support
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I understand that, even if patients continue to complain of thyroid symptoms, if blood tests are 'within normal limits', GPs are reluctant to do further tests :-\
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Hi Floral, can you tell us specifically what's worrying you about your thyroid tests? Would be good to have the ref ranges for the May results you've given & your latest too :) At first glance they look OK.
Wx
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Hi
Have you got the lab ranges?
I suffer from an underactive thyroid and Hashimotos, so I totally understand how your feeling.
There are several good thyroid forums that can offer you advice one being HealthUnlocked join the thyroid forum.
They helped me no end on my thyroid journey.
Best wishes
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Hi Floral, I would second the suggestion above to join the Thyroid UK forum on HealthUnlocked, they are extremely helpful.
I personally think your TSH is too high, the typical healthy result is around 1 - 1.5. It is important to test around 9am as this is when TSH is highest and it drops throughout the day. Are there others with thyroid disease in your family? It would also be worth having your TPO and TG antibodies tested to show if there is autoimmune disease going on.
I think your T4 is below range on Medichecks so this is a big red flag in my mind. Have you mentioned this to your GP?
Many people resort to private testing to get answers as the NHS is awful at diagnosing and treating thyroid disease (myself included!)
Also have a look at the Thyroid UK website.
Good luck :)
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Hi ladies and thank you!
Wrengsong tbh I was so anx yesterday that I started wondering if my current symptoms could be thyroid but deep down I don’t think so. My latest TSH from GP was fine. Back in May my free Thyroxine was slightly under but apparently this can happen. I am having awful sweats and palpitations/racing heart which waken me, iv no energy and feel v down and anxious. My menopause specialist has changed me to patch but just on that over 2 weeks so too early to judge. Covid last year had a big impact on my hrt and iv struggled on &!off since.
Peanut lab ranges were
TSH 0.27-4.2 (mine 2.79)
Free T3 3.1-6.8 (mine 4)pmol/L
Free T 12-22 ( 11.6) so just under
I asked GP to test the free T again but they just do TSH and thst again was fine not long ago. I don’t think it’s that. Sorry to hear you have all that going on.
I feel my estrogen & T just crashed a few weeks ago, I hadn’t felt good for few weeks and then I just literally went down full stop!
Tk you CLKD and Sarah T
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Hi
With reference your thyroid issues, one thing I see straight away from your results are, your T4 results are too low, this will be causing anxiety, T3 results are not great either causing tiredness.
TSH results are not great, but until your TSH results hit 10 or above your GP will not treat you with thyroid medication, unless, you have a GP that listens to there patient, rather than the NHS guidelines.
NHS goes by TSH results alone, which is not how thyroid patients should be treated.
Are you on any thyroid medication at all?.
It has already been mentioned you need to check your antibodies, I have Hashimoto’s and I managed to get the results lower by changing my diet.
If you can afford it, private blood testing is good, I use Medichecks, you can do a finger prick test at home and then send it to the lab.
You can ask for a GP to comment on your results, or get the results quicker by no comment.
Then post them on the thyroid forum for help. I would also suggest getting your vitamins tested too, this is something the thyroid forum would suggest as well.
I have my thyroid issues under control now, from gaining advice from thyroid forums, and making life style changes. I take levo and also NDT for my thyroid.
One thing I want to stress is the GP’s do not always know what is best, especially thyroid.
I say this from my own thyroid experience.
Good luck
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Echoing what Peanut said.
Your T4 is below range and this is not normal. In fact, it’s the very definition of hypothyroid - low thyroid hormones!
Your TSH is a pituitary hormone and it is not accurately reflecting your low T4. This could be a pituitary problem - look up “central hypothyroidism “ and “Sheehans Syndrome”.
Symptoms can very much overlap with menopausal symptoms.
I wish you well, my thyroid problems were dismissed for many years due to a “normal” TSH (ie, within range) and I had around a decade of needless suffering because of this.
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Thanks so much ladies! Who is best to look at this and most importantly treat it? Tk u
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Floral, I would first suggest getting full testing which you may need to do privately - you’ve already used Medichecks but check Thyroid UK website for more options plus discount codes.
Please remember to do thyroid tests first thing, ideally around 9am, and preferably fasting.
If your TSH is still within range, you will have difficulty getting the NHS to diagnose and treat but it is not impossible. Thyroid UK hold a list of endocrinologists with an interest in thyroid disease which might be helpful.
If you speak to your GP please stress that your T4 was below range and you would like it retested. And emphasise your symptoms - I think too many doctors just look at numbers and forget to ask how the patient is feeling!
I would also urge you again to check out the HealthUnlocked Thyroid forum as it a very active forum where the help is invaluable, speaking from personal experience.
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Smorzando thank you so much for the great info!
Randox which is near me do tests
They are for Free T4, T3, Anti TG and Anti TPO
Ladies would these tests be all that’s initially needed? Tks
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For full testing it is often recommend to also test Ferritin, Folate, B12 and Vit D, along with the ones you’ve mentioned (I assume the test would also include TSH?).
I don’t know much about Randox although I’ve heard the name.
If you are able to do at-home testing, you could look at Monitor My Health which is actually an NHS run lab in Exeter which offers private testing at reasonable prices? I find it’s harder for your GP to dismiss these results as they’ve been done in an NHS lab. Thyroid UK offer a discount code for these tests.
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Randox used to do all the paid for Covid testing for travel abroad etc.
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Hi ladies and thank you!
Wrengsong tbh I was so anx yesterday that I started wondering if my current symptoms could be thyroid but deep down I don’t think so. My latest TSH from GP was fine. Back in May my free Thyroxine was slightly under but apparently this can happen. I am having awful sweats and palpitations/racing heart which waken me, iv no energy and feel v down and anxious. My menopause specialist has changed me to patch but just on that over 2 weeks so too early to judge. Covid last year had a big impact on my hrt and iv struggled on &!off since.
Peanut lab ranges were
TSH 0.27-4.2 (mine 2.79)
Free T3 3.1-6.8 (mine 4)pmol/L
Free T 12-22 ( 11.6) so just under
I asked GP to test the free T again but they just do TSH and thst again was fine not long ago. I don’t think it’s that. Sorry to hear you have all that going on.
I feel my estrogen & T just crashed a few weeks ago, I hadn’t felt good for few weeks and then I just literally went down full stop!
Tk you CLKD and Sarah T
Hi Floral - I too have an underactive thyroid, for which I’ve been treated over the years. Without going into too much detail, my thyroid ‘crashed’ a few weeks ago with the same symptoms you described and I was so weak I haven't been able to perform even basic daily routines for myself. Went to A&E who did TFTs and was told they were fine. Basically they weren’t as my free T3 (FT3), whilst ‘in range’, was far too low for me to function. It was a little lower than yours is now. I know this because I immediately stopped taking Levothyroxine and went back on Armour thyroid, which I had previously taken without a problem, and my symptoms are gradually but notably getting back under control. It’s been a frightening experience but my point is, your FT3 looks relatively low to me and it’s possible that, like many other people find, it’s not optimal for you personally even though it’s supposedly in range.
In my years researching thyroid treatment, eyeing up results and speaking to other hypo sufferers on forums like some ladies here mentioned, I’m conscious that mainstream medicine often misses the importance of FT3 despite clear evidence that it’s the biologically active and therefore most critical hormone to test and have at optimal levels to function. Like some suggested, try joining a forum where you can learn more about the thyroid and get some guidance around how to have a conversation with an NHS professional about what you learned. And about your options if that doesn’t work! Try looking up Thyroid Patient Advocacy online too. You join the forum to post a question but the people there are very knowledgeable and generous with their time.
To answer the title question of this thread: many symptoms are blamed primarily on sex hormones/HRT when, for thyroid patients, they may be primarily thyroid related. It’s worth investigating further, as now I’m on the right thyroid treatment, other symptoms are easing that I thought were due to menopause.
Don’t give up hope, my story isn’t necessarily yours, but the information you’ve shared warrants further investigation and you’re worth it x
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Floral I echo what peanut said.
If you need more help with thyroid stuff I recommend thethyroidclinic.co.uk They are who I'm with for it all and are great. They will probably want to re-test you with a venous draw and include rT3 (which Medichecks doesn't offer). You can order the blood tests from their website and the pack will be sent to you and then you go to your nearest phlebotomist to get them done (they will give you a list) and post them off. Then you can have your appointment after that, so they have the bloods done beforehand.
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Girls you are all AMAZING on this forum!
I am so grateful to you all who posted back and I am going to get tested because I have been and felt so unwell!
I will look into the sites you have recommended and get going!
Onwards and upwards🤞X
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Furyan,
What is armour thyroid and why were you on lev? Sorry but I’m in no way knowledgeable. Did you get treated privately? Thank u
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Furyan,
What is armour thyroid and why were you on lev? Sorry but I’m in no way knowledgeable. Did you get treated privately? Thank u
Hi Floral - Levothyroxine is what the NHS mostly prescribe to treat hypothyroidism, which I’m diagnosed with. It is a synthetic compound. Armour thyroid is just one of several naturally derived thyroid medicines (from pigs) that people were routinely prescribed decades ago to treat the condition. The medical profession generally stopped prescribing it in favour of Levothyroxine because they assumed (on the basis of limited research) that EVERYONE could be effectively treated with the latter. The pharmaceutical companies also push this assumption fiercely. However, the hypothyroid population appears flooded with individuals whose symptoms are not controlled effectively on Levothyroxine alone i.e. some continue to feel ill or even worse. Some decide to get natural thyroid themselves or get it prescribed by knowledgeable practitioners. At some point, Armour was recommended to me by a friend because I too continued to experience symptoms on Levo. Within months of returning to Levo, I’ve crashed …
But all that is for background information only, as you asked. For now, I’d focus on finding information and support using any of those forums mentioned. Knowledge is power is autonomy when you know how to use it. You’ll at least have a broader perspective of your issues and be able to form a plan for a way forward. x
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Hi Floral, only just caught up with this thread & I see you've had lots of advice from other thyroid patients, so I won't add much. I'm also long term hypothyroid (nearly 30 years) & on both T4 & T3. Thank you for posting more detail of your TFTs. Your FT4, as the others have said, was low in May & some people do need a lower TSH & higher T3 to feel well, but it's not a one size fits all rule.
I was so anx yesterday that I started wondering if my current symptoms could be thyroid but deep down I don’t think so.
I think your instinct is important & if you have had a very recent change of HRT, regardless of thyroid status that may be causing or adding to your current symptoms. Given the low FT4 I would at least try to get a full TFT done again together with thyroid antibodies & take it from there.
I hope you find the answers you need, either in some of the advice in this thread or as has been suggested, on one of the thyroid forums & that you'll soon be feeling very much better.
Wx
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Hi ladies,
I have sent away for a blood pack and a consultation with Thyroid uk. Does anyone know if my treatment (.if any) can be funded by nhs? Have any of you had any experience? Many tks
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My TSH was stable around 2.5 for decades on a lowish dose of thyroxine and I felt absolutely fine. After the second dose of the AZ covid jab it shot up and I had to go onto a higher dose of medication. It's now bordering on 0. I feel no better, no worse! Not sure if I'll be told to drop the dosage again at some point.
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Hi Floral
Does anyone know if my treatment (.if any) can be funded by nhs?
If it turns out you need Thyroxine then yes it is prescribed on the NHS. Given your TSH & T3 were within range & you've only had one test with low T4, there may be other reasons it was below range on that one occasion. Sometimes we can get transient changes in thyroid function & the situation later rights itself with no treatment needed e.g. when we have had other "non-thyroidal illnesses." If you do need Thyroxine, most people do well on it & don't need additional medication containing the other thyroid hormone that's sometimes prescribed (known as T3) so please try not to worry.
Wx
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Hi
You may struggle to get Levothyroxine under the NHS if your TSH is below 10. Unless your GP will treat by symptoms not blood results.
If that is the case, don’t let him start you on 25mcg, it is too low. Go for 50mcg, hold at that dosage for 6-8 weeks then test your thyroid again TSH, T3 & T4, but don’t take your thyroid tablet 24 hours before the test, and test as early in the morning before 9am.
Then keep increasing your levo by 25mcg each time, again testing every 6-8 weeks at a time.
This was my experience and many on thyroid forums have the same issue with the NHS even endocrinologist.
They don’t look at the full thyroid picture being TSH, T3 & T4.
This is why many people resort to self medicating.
The problem you may have is, your TSH is within the acceptable ranges within the NHS guidelines, and they are obsessed with TSH only which is wrong.
Your GP may not agree to this thyroid medication despite your symptoms.
They will probably not take into account your own private bloods either.
However, it is important to get those tests done so you yourself can see what is happening.
My own thyroid story, very briefly is I felt very unwell for a long period of time. Told thyroid blood tests “normal” accepted this and thought nothing of it, told to go on anti depressants, refused.
Asked for blood results my TSH was 8, told had to wait until it got to 10 before help.
By the time my TSH was 10 I was a zombie, hubby had to help me dress and functioning normally was a struggle.
By this time I was sick of being fobbed off. I researched, joined thyroid forums desperate for help.
Eventually I was put on levo by the NHS, hoping this was the miracle I needed. It didn’t help, so cut a very long story short, and with the support from thyroid forums, I am now on levo and NDT.
NDT I self medicate, many thyroid patients do
NDT use to be given to thyroid patients, before levo was manufactured, but patients don’t always get on with this as it is synthetic.
NDT is natural desiccated thyroid tablet that contains both T4 and T4.
Levo only contains T4. Many patients cannot convert T4 to T3 and that is why they don’t do well on Levo.
Another thing to add, when GP’s see your TSH go to 0 (suppressed) they get nervous and lower your dosage, again focusing on TSH results only to up your TSH.
This makes the patients feel even worse.
I cannot express how important vitamins play in the support of your thyroid too, don’t over look those. Make sure you take vitamins and don’t go for multi vitamins.
You have been given lots of good knowledgeable advice already, just research, research, research.
Good luck & take care.
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Peanut
Many patients cannot convert T4 to T3 and that is why they don’t do well on Levo.
I'm among that subset with a conversion defect & I agree a form of T3 containing medication is essential in our case, but I thought it was generally agreed that the group of patients needing T3 is only 15% & that the vast majority - 85% of patients, do well on Thyroxine alone. Am I out of date with the stats do you know? Floral has told us she is, understandably, anxious & while there is a lot of helpful, detailed info on this thread as you say, I feel emphasising the problems some of us have encountered could be overwhelming to someone who has not yet been diagnosed with a thyroid disorder. It's possible her low T4 in May was a blip & I'm hoping this is the case.
Wx
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Hi Wrensong
It is not my intention to make Floral feel overwhelmed, and I hope she doesn’t.
I know when I felt so poorly and starting looking into things, I actually found comfort in knowing others experienced similar things and would share their own experiences.
It’s down to those people with their advice on the forums that I got better.
As already mentioned it could be a vitamin deficiency too.
Luckily for me, if you look at it as lucky, my thyroid issues started a long time before my menopausal journey, so know it wasn’t anything to do with the menopause.
Best wishes & take care
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Thank you Peanut31. I just felt a bit alarmed for Floral when I came back to this thread a few days ago & saw how much detailed & quite advanced info had been posted since I'd asked her whether she would mind posting her ref ranges & I worried that it might be frightening for someone new to the possibility of thyroid disease, who perhaps just needed the basics at this stage. I didn't want her to worry prematurely if you see what I mean, but I absolutely agree that sharing our stories can be invaluable & I'm glad to know advice & support from thyroid forums played an important part in helping you get better. Like yours, my thyroid journey started long before menopause but the combination has been tough which is why I try to look out for women with both conditions.
Keep posting :)
Wx
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I agree that some of the replies on this thread are touching on “advanced” information, but I felt that Floral’s questions were also insightful ones, the answers to which inevitably touch on concepts beyond the basics. All issues to do with the endocrine system are potentially complex (hence the many threads on this forum) and it’s hard to strike a balance when trying to help without overwhelming whoever posts a question. The thyroid is complex and contentious enough on its own so it’s great to signpost to other sites, as at least people can access broad information and process it in their own time.
Having said all that, Floral, I can see from your replies that you’re finding some of this helpful. It’s brilliant that you’ve ordered some tests! Just come back here for a sounding board if you feel the need. You’ll get there if only because you’re actively on it! x
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Furyan, yes I agree endocrine matters are complex (and then some!) I did see that Floral was very grateful for all the info everyone had posted, so hopefully my worries were groundless, but I was mindful of what she said early on, that she didn't think her symptoms were due to a thyroid problem
Wrengsong tbh I was so anx yesterday that I started wondering if my current symptoms could be thyroid but deep down I don’t think so. My latest TSH from GP was fine. . . . I asked GP to test the free T again but they just do TSH and thst again was fine not long ago. I don’t think it’s that.
& not wanting to stress her further at this stage, potentially unnecessarily when she had already said she was anxious & she'd had only one TFT that was slightly abnormal. I just sort of felt the thread had run away with itself a bit if you see what I mean.
Wx
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Jolly boo, sorry you were affected, my problems began after my one and only jab.
Ladies I am ok re the posts and I will know more when I get my bloods back so will let you all know. I appreciate any useful information.
I definitively know there is something out of whack and as someone else said near normal might not be right for me.
Those results were back in May but I feel I have deteriorated since that.
It may be an issue between T3 & T4, time will tell. X
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Glad to know you are not unduly worried Floral. Good luck with the tests & I hope you manage to get to the bottom of it.
Wx
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Thank you wrensong for thinking of me. It’s tough feeling this way but I will be having thorough blood tests and an apt with a specialist. X
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I think that's very sensible Floral & hopefully it will help put you on the right path to feeling much better.
Wx
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Thank you!
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Hmm ... that's interesting Floral.
Here's the weird thing. My partner was also called by our GP after his second jab to discuss his TSH result.
Up to that point in time he had never had any previous thyroid issues. In fact at first he thought the GP had got the two of us mixed up! In his case he was bordering on overactive. He's now being monitored. It was only the fact that we both happened to be scheduled for an annual routine blood test at that particular that all this came to light.
Makes me wonder how many other people may be struggling along not realising they have an undiagnosed thyroid condition.
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Well jolly boo that sure is interesting, could call it an abs pain tbh!! Was your partner having symptoms?
Thing is even if someone’s TSH is appearing normal, it doesn’t always detect and therefore if having symptoms a full thyroid panel is recommended.
Oh I wish I had all this sorted, my system is all over the place!
I received my blood pack today from the thyroid clinic so will get that off next week, then I have an Endo apt booked so 🤞🤞 X
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Neither of us were feeling any different when we got called by the GP - it all came completely out of the blue.
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Well at least that’s a blessing!
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Furyan, yes I agree endocrine matters are complex (and then some!) I did see that Floral was very grateful for all the info everyone had posted, so hopefully my worries were groundless, but I was mindful of what she said early on, that she didn't think her symptoms were due to a thyroid problemWrengsong tbh I was so anx yesterday that I started wondering if my current symptoms could be thyroid but deep down I don’t think so. My latest TSH from GP was fine. . . . I asked GP to test the free T again but they just do TSH and thst again was fine not long ago. I don’t think it’s that.
& not wanting to stress her further at this stage, potentially unnecessarily when she had already said she was anxious & she'd had only one TFT that was slightly abnormal. I just sort of felt the thread had run away with itself a bit if you see what I mean.
Wx
At the moment I’m now stuck with the question of whether or not certain symptoms are thyroid or meno related!
Since my thyroid crashed a few weeks ago, I am now building up my dose of thyroid medication. Bizarrely, I’ve had a return of feeling a bit warmer at night, aching joints, hand cramps and constipation. Thse are all symptoms I got with low oestrogen and were usually sorted by upping the dose.
Besides thyroid meds, I’m on 2.5 pumps Oestrogel, 60-70mg Cyclogest, 4 mg testosterone and 10mg DHEA. What do you think the added symptoms could be? I thought maybe an increase in oestrogen is needed but just a little puzzled as to why it seems sudden since changing my thyroid meds. As we know, low thyroid and oestrogen issues overlap, so just wanted people’s thoughts. Also uncertain about changing the HRT until my thyroid dose is optimal as the rule of thumb is to change one thing at a time…
Thanks all x
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Am interested in this thread as I have an under active thyroid which has worsened since peri hit me with a vengeance... I am due a cortisol blood test soon as my cortisol levels were low and I am certainly wondering if thyroid has been knocked out of joint with the oestrogen.
Have varying symptoms which, as you say overlap between the two. Sodding hormones. Just hope the blood tests reveals some answers as I can't change anything until this is done.
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Hi Furyan, it can be so difficult to work out cause & effect when we have both conditions, I agree. I can't say anything definitively as it's all so complex, my knowledge is very limited & we are all up against variations in individual biochemistry & genetics. I can only suggest a few things you might want to think about if you haven't already & you can then see whether any of them seem likely.
I am now building up my dose of thyroid medication. Bizarrely, I’ve had a return of feeling a bit warmer at night, aching joints, hand cramps and constipation. Thse are all symptoms I got with low oestrogen and were usually sorted by upping the dose.
1) More thyroid hormone in your system should make you warmer if it's increasing your metabolism - you'll know that, so sorry for stating the obvious, but sometimes when we have so much going on it's easy to overlook the basics we know so well & I'd hate us to miss something simple when we're brainstorming! Is it possible your TH dose has inadvertently got a bit too high while you've been trying to optimise it?
2) I find the more TH in my system the more I pee & not noticing that change if it's gradual can cause us to underestimate how much fluid we need . . . for among other things keeping constipation at bay & helping prevent us overheating.
3) Cramp can also occur with electrolyte imbalances/dehydration.
4) The increase in TH may be clearing oestrogen more efficiently from your system, so less hanging around, perhaps giving reduced menopause symptom relief? But if you're constipated I'd have thought this scenario less likely.
5) I can't see your earlier posts as I type this to be sure whether you're on T4 monotherapy, T4+T3 or NDT, but confusingly there seems to be some evidence that increasing T4 dose (if that's what you've done recently) can paradoxically reduce T3 by limiting activity of an enzyme involved in conversion. If you now have less active T3 in your system, that could maybe account for the constipation, cause a flare in any hypothyroid-related joint issues & perhaps affect your ability to regulate your temperature.
6) Contrary to your experience that higher oestrogen levels seemed to help prevent constipation, I find the higher my oestrogen dose, the slower my gut transit. Which is an absolute pain.
I've never taken Cyclogest but progesterone potentiates TH & Utro always made me feel hyper, way too hot at night, pee for England - needing great care to avoid dehydration - & made my joints hurt. How much of that is due to its effects on TH & how much to its opposing oestrogen I don't know.
Also never taken DHEA, though my Endocrinologist was considering prescribing it some time back.
uncertain about changing the HRT until my thyroid dose is optimal as the rule of thumb is to change one thing at a time…
I've so often been in the same situation & it's difficult, but yes I agree, one thing at a time if you can? When are you intending a TFT & were your last results only slightly suboptimal or very?
Sorry if this just adds to the confusion :o. It's easy to overthink when we feel rotten & I've gone round & round in circles myself trying to balance thyroid & HRT, but sometimes chatting to someone else in the same boat can bring a little insight.
Wx
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Peanut31, if you're reading, I've sent you a PM.
Wx
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Hi Furyan, it can be so difficult to work out cause & effect when we have both conditions, I agree. I can't say anything definitively as it's all so complex, my knowledge is very limited & we are all up against variations in individual biochemistry & genetics. I can only suggest a few things you might want to think about if you haven't already & you can then see whether any of them seem likely.
I am now building up my dose of thyroid medication. Bizarrely, I’ve had a return of feeling a bit warmer at night, aching joints, hand cramps and constipation. Thse are all symptoms I got with low oestrogen and were usually sorted by upping the dose.
1) More thyroid hormone in your system should make you warmer if it's increasing your metabolism - you'll know that, so sorry for stating the obvious, but sometimes when we have so much going on it's easy to overlook the basics we know so well & I'd hate us to miss something simple when we're brainstorming! Is it possible your TH dose has inadvertently got a bit too high while you've been trying to optimise it?
2) I find the more TH in my system the more I pee & not noticing that change if it's gradual can cause us to underestimate how much fluid we need . . . for among other things keeping constipation at bay & helping prevent us overheating.
3) Cramp can also occur with electrolyte imbalances/dehydration.
4) The increase in TH may be clearing oestrogen more efficiently from your system, so less hanging around, perhaps giving reduced menopause symptom relief? But if you're constipated I'd have thought this scenario less likely.
5) I can't see your earlier posts as I type this to be sure whether you're on T4 monotherapy, T4+T3 or NDT, but confusingly there seems to be some evidence that increasing T4 dose (if that's what you've done recently) can paradoxically reduce T3 by limiting activity of an enzyme involved in conversion. If you now have less active T3 in your system, that could maybe account for the constipation, cause a flare in any hypothyroid-related joint issues & perhaps affect your ability to regulate your temperature.
6) Contrary to your experience that higher oestrogen levels seemed to help prevent constipation, I find the higher my oestrogen dose, the slower my gut transit. Which is an absolute pain.
I've never taken Cyclogest but progesterone potentiates TH & Utro always made me feel hyper, way too hot at night, pee for England - needing great care to avoid dehydration - & made my joints hurt. How much of that is due to its effects on TH & how much to its opposing oestrogen I don't know.
Also never taken DHEA, though my Endocrinologist was considering prescribing it some time back.
uncertain about changing the HRT until my thyroid dose is optimal as the rule of thumb is to change one thing at a time…
I've so often been in the same situation & it's difficult, but yes I agree, one thing at a time if you can? When are you intending a TFT & were your last results only slightly suboptimal or very?
Sorry if this just adds to the confusion :o. It's easy to overthink when we feel rotten & I've gone round & round in circles myself trying to balance thyroid & HRT, but sometimes chatting to someone else in the same boat can bring a little insight.
Wx
Thanks Wrensong, for such a detailed reply. No need to be sorry for saying what you think is ‘obvious’ - it’s good to go back to basics when problem-solving. I agree that we can feel in the dark when trying to sort through thyroid and sex hormones at the same time!
The points you made are really valid ones, and 1 and 2 especially resonate. I thought it odd that I’d feel warmer due of low oestrogen on 2.5 pumps because this meno symptom was always sorted on a much lower dose for me. Reading your feedback, I’m thinking that feeling warmer at times may be due to my body adjusting to the increased T3 (I’m on NDT, just upped to 2 grains if you’re familiar with it). I don’t think it’s over medication, as it began the moment I switched from Levothyroxine to NDT, which as you know contains T3. My basal temp has also increased on the healthy side so the medication is definitely impacting my metabolism. I did wonder why I am more thirsty at times too, and what you said makes sense! Last night, I noticed my heart more when I was thirsty so I downed some water and it settled as did the thirst. I’m supplementing with the main electrolytes on account that I was up til recently on a keto/low carb diet (had to stop when I crashed). I’ll be mindful of the link between increased TH and hydration needs…
Also, the constipation might be because I need to stabilise on an optimal TH dose, as it comes and goes. Interesting what you say about your experience of oestrogen in that department. Someone else cautioned me against tweaking it and focus on optimising TH for now, as that’s the most important thing to get right. So today, I’ve reduced it back to a 25 Evorel patch/Biest cream combo to give me a steady base level of oestrogen until I reach my TH sweet spot. As you said - one thing at a time.
When I crashed, A&E did a TFT, which showed suppressed TSH, normal FT4 and very low FT3 (although the latter was supposedly “in range”). My gut feeling about a possible conversion problem and low T3 has been proven as I came off T4 monotherapy and began to build my dose of NDT because at least my energy is slowly coming back.
You’re right, it’s confusing at best to sort through the mire of thyroid and HRT hormone balancing, I appreciate your thoughts as I’m desperate to feel at least a ‘good enough’ balance again. xx
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I'm also going through the is-it-thyroid-or-estrogen thing. I've gone backwards and forwards with what I think the causes of my symptoms are.
At the moment, I'm thinking it was low estrogen. Or fluctuating estrogen. Only because I had estrogen bloods run on day 16 of my cycle, on 4 pumps of gel, and my estrogen was only 283pmol. And some of that would have been my own, who knows how much. So I'm getting rubbish amounts of estrogen from the gel it looks like. Which isn't going to be enough to override peri fluctuations and be symptom-free according to my Newson dr. (Who says most women do best between 400-600.) I've also been much worse around my period, which again would suggest low estrogen has something to do with all this.
I'm now on 5 pumps of gel and might need more. (If I have more body parts to apply it to.) I've previously tried patches and those seemed even worse so I just don't absorb well through my skin really.
But the T3 is helping with my metabolism. I don't know if I'm on a high enough dose and I'm waiting for thyroid bloods to come back any day now. (Only on 5mcg 3x/day). My feet are still ice blocks at night. I've been on it about 8 weeks now. I very much hope this is a temporary thing and I don't need to stay on it because it's bloody expensive....
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Peanut31, if you're reading, I've sent you a PM.
Wx
Hi, I’ve replied.
Xxx
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Hi Furyan, I have taken NDT in the past but couldn't get on with it, so yes, familiar with its composition. I take Thyroxine & Liothyronine these days. You'll be aware that the proportion of T3:T4 in NDT is relatively high compared to what happens in the human body, but I know some people feel better on it than with synthetic thyroid meds.
I was up til recently on a keto/low carb diet (had to stop when I crashed) . . . When I crashed, A&E did a TFT, which showed suppressed TSH, normal high FT4 and very low FT3 (although the latter was supposedly “in range”). My gut feeling about a possible conversion problem and low T3 has been proven as I came off T4 monotherapy and began to build my dose of NDT because at least my energy is slowly coming back.
Ooh :o this set alarm bells ringing in relation to thyroid health as intake of adequate carbs is considered to be very important in hypothyroidism, not least for conversion of T4-T3. I imagine from your saying you had to stop the diet that you're aware of how a too low carb diet can be detrimental for thyroid function, but I'm posting some links about it here in case other members with thyroid concerns are not.
https://www.palomahealth.com/learn/low-carb-diets-thyroid
https://hayatnutritionandwellness.com/keto-and-hypothyroidism
https://chriskresser.com/is-a-low-carb-diet-ruining-your-health/
Floral, apologies for cluttering your thread with this issue but I feel a responsibility to flag up anything that may be harmful to someone with thyroid issues as & when it arises.
Someone else cautioned me against tweaking it and focus on optimising TH for now, as that’s the most important thing to get right.
I think that's sensible - getting your thyroid sorted is fundamental to your wellbeing so I think I would concentrate on that for now.
Wx
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Peanut31, thank you for your message :). I have replied!
Wx
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Hi Furyan, I have taken NDT in the past but couldn't get on with it, so yes, familiar with its composition. I take Thyroxine & Liothyronine these days. You'll be aware that the proportion of T3:T4 in NDT is relatively high compared to what happens in the human body, but I know some people feel better on it than with synthetic thyroid meds.
I was up til recently on a keto/low carb diet (had to stop when I crashed) . . . When I crashed, A&E did a TFT, which showed suppressed TSH, normal high FT4 and very low FT3 (although the latter was supposedly “in range”). My gut feeling about a possible conversion problem and low T3 has been proven as I came off T4 monotherapy and began to build my dose of NDT because at least my energy is slowly coming back.
Ooh :o this set alarm bells ringing in relation to thyroid health as intake of adequate carbs is considered to be very important in hypothyroidism, not least for conversion of T4-T3. I imagine from your saying you had to stop the diet that you're aware of how a too low carb diet can be detrimental for thyroid function, but I'm posting some links about it here in case other members with thyroid concerns are not.
https://www.palomahealth.com/learn/low-carb-diets-thyroid
https://hayatnutritionandwellness.com/keto-and-hypothyroidism
https://chriskresser.com/is-a-low-carb-diet-ruining-your-health/
Floral, apologies for cluttering your thread with this issue but I feel a responsibility to flag up anything that may be harmful to someone with thyroid issues as & when it arises.
Someone else cautioned me against tweaking it and focus on optimising TH for now, as that’s the most important thing to get right.
I think that's sensible - getting your thyroid sorted is fundamental to your wellbeing so I think I would concentrate on that for now.
Wx
Yes, the proportion of T4 to T3 is higher in Armour and I figured that, since I’d got on well with it for a few years before and seem to be in dire need of T3 now, I’d go back on it. I was desperate and fortunate I had some left otherwise I dread to imagine the state I’d be in now. In hindsight, when I was first diagnosed hypothyroid, I may have benefited from combined T3 and T4, but I didn’t have strength to battle more with NHS endos…
Yes, I wish I’d known about contraindications between keto and fasting with thyroid and menopause! Since I crashed, I learned how a few factors (including keto and menopause itself) were likely huge factors that compromised my poor thyroid, which I had been neglecting to focus on them. Lesson well and truly learned! Needless to say, I’ve built more carbs into my diet chiefly because of that but also because my body needs a more immediate source of energy for the time being. Once my energy is back, I’d aim to achieve a better balance this time. Thanks for those links, I know other thyroid patients will find this useful as well.
Btw, I read somewhere that the NHS are trying to stop prescribing T3 because the costs rocketed. They’re even trying to get existing patients to go onto T4 monotherapy. Is this true? I’m just wondering if your regime might be something to consider in the future if sourcing NDT gets too costly… x
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I echo what Wrensong has said about keto. I think my own high rT3/low T3 issues were caused by low carb/keto/intermittent fasting and a history of disordered eating.... But sometimes just changing all that isn't enough to reverse things. Don't do it, though, if you can help it...
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I echo what Wrensong has said about keto. I think my own high rT3/low T3 issues were caused by low carb/keto/intermittent fasting and a history of disordered eating.... But sometimes just changing all that isn't enough to reverse things. Don't do it, though, if you can help it...
Joziel, I find it helpful that you shared your experience, thank you. Not that I want anyone to go through this but it’s reassuring to have possible explanations of what part I played in this. Looking at previous TFTs over the years, it’s possible I’m not the best at converting T4 anyway but I’ve done low carb for years, even prior to my diagnosis. Going even lower and fasting with keto was a big ‘no, no’ and I get the alarm bells that you and Wrensong felt. I’ve taken vitamin D for ages but have now added selenium to supplement. I agree, simply reintroducing carbs and whatever doesn’t automatically mean I’ll magically start to convert but I hope it helps x
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Ladies such a minefield! Sorry to read what some of you are going through. I’m no help really as not any experience.
I’ve no diagnosis yet but getting a full thyroid etc testing tomorrow morning to send off to Thyroid uk clinic. Can’t come soon enough I’m so affected, life again at a standstill this past 6 weeks. X
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Ladies such a minefield! Sorry to read what some of you are going through. I’m no help really as not any experience.
I’ve no diagnosis yet but getting a full thyroid etc testing tomorrow morning to send off to Thyroid uk clinic. Can’t come soon enough I’m so affected, life again at a standstill this past 6 weeks. X
Good on you for being proactive and taking steps to get your bloods done 👏🏽👏🏽👏🏽
Do let us know how it goes/results if you want to :) x
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Of course I will let you know!
Hoping something that can be sorted🤞
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So ladies
So here are my new thyroid results, I’m not seeing anything obvious.
TSH 2.34 (0.270 - 4.2) range
Free T3 3.9 (3.1- 6.8)
FT4 15.7 (12 - 22)
Thyroglobulin antibodies 12.1 (0 -115)
TPA <9 (0-34)
I still feel terrible with patch change over my estrogen 213 (I’m 62) anxiety awful, when will this ever stop🥲
Tks for reading
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Did you test your rt3? That one is important, it was the only test which was out for me. I'm now on T3...
213 estrogen is pretty borderline. Some women would feel fine with that amount but many would be symptomatic. My Newson dr says most women do best between 400-600pmol for estrogen. Obviously loads are fine with less than that and some need even more, but it's a ballpark... Mine was 283pmol and I was told to go up a pump (now on 5 pumps, I don't absorb v well).
It's possible you just need more estrogen....
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Hi Furyan, I'm sorry to be so late replying. Was away from the forum for a while & just trying to catch up. I'm so glad you're aware of the low carb dangers as regards thyroid function. How are you doing now?
Btw, I read somewhere that the NHS are trying to stop prescribing T3 because the costs rocketed. They’re even trying to get existing patients to go onto T4 monotherapy. Is this true? I’m just wondering if your regime might be something to consider in the future if sourcing NDT gets too costly… x
There was widescale withdrawal of T3 prescribing by the NHS from around 2018 because as you say, the price went stratospheric with a monopoly on production/supply. I was lucky to get mine reinstated because my Endocrinologist intervened with the CCG informing them I met the criteria for continued prescribing, but yes many patients were put back onto T4 monotherapy. The pharma company involved was later heavily fined for the price hikes, in 2021 I think. The price of T3 has since been reduced & the monopoly has thankfully ended, with a number of brands back on the market. It's still expensive compared to Thyroxine, but for those of us who can't convert Thyroxine well enough it's essential.
Wx
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Hi Floral, sorry to be so late replying as I said on your other thread earlier today. Thank you for posting your latest results, which I imagine are disappointing for you. As you say, there's nothing very obviously wrong with the TFT, though your T3 is quite low down the scale & patients on replacement with a confirmed thyroid disorder often need their TSH to be quite low to feel well. I did before menopause but I'm around your age now & a decade+ postmenopause & feel best with a TSH around 2 - 2.5. I think you'd struggle to get a GP to treat with thyroid replacement on the basis of this test.
You say you feel awful with patch changeover. How many days are you going between changes? Sorry if we've covered this before, but some of us change twice weekly patches every 3 days to avoid a possible dip in levels towards the end of a patch's life.
As Joziel says, your oestrogen dose may not be right for you. Have you tried increasing slightly (or been on lower doses to know how that suited you?)
Wx
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I agree, Floral, that T3 is quite low - which is why you really need to know the rT3 as well. That was what my original (not on thyroid meds) results were like - a pretty low T3, but in range. When rT3 was tested it was 33 (v high). So that, combined with the low T3 means I was hardly getting any T3....
By the way, I have an update on my thyroid stuff now. (Wrensong I know I was messaging you about it for a while too.) My symptoms were really debilitating - whole body shaking at night, heart beating hard and faster than usual, hypnic jerks every time I started to fall asleep and - of course - insomnia. For 18 months and counting...
I was put on T3, only 5mcg 3x daily, to try to kick start my body into converting properly again. Because I had high/good T4, but low (in range) T3 and high rT3. So the thinking was that it was a conversion problem, that I was converting T4 to rt3 instead of T3. We didn't know why as I had addressed everything which could have caused this but my body wasn't getting the memo. I felt much better for about a month on the T3 - it was the only thing I've ever tried which affected the symptoms at all, so I was then pretty sure it was thyroid related. And then everything went to poop again... symptoms came back about as bad as before.
I had bloods done after 9wks on T3 (waited 18hrs since the last dose to test, tested in the Am, fasted, no biotin etc..!)... And whilst my rT3 had come down to 15 (borderline ok), and my T3 had gone up slightly (still not in top of range), my T4 had plummeted: Now my free T4 was 9.7 (range 12-22) - it had been 18 before - and my total T4 was 54 (range 59-154). I was given an emergency appointment immediately (private thyroid dr) and prescribed 50mcg/day of levo/T4 as well. We kept the T3 the same whilst we see how I convert the T4. More bloods in January....
I'm now v confused about whether I do/did have a conversion problem or whether I do/did have a genuine thyroid problem.
Some people say that if you don't really have anything wrong with your thyroid and you take some T3, it will stop your thyroid working and maybe that's why my T4 plummeted and I got the second bunch of results - yet I also wasn't taking enough by itself to compensate. (I mean, I should have been on a proper T3 dose, not a micro 5mcg 3x/day dose.) That makes me think maybe I can come off these meds at some future point...?
But my dr said something like... Sometimes the body does an amazing job of masking problems with thyroid results and it can be hard to see what the problem is, there can just be one thing slightly out and nothing obvious. But if you give someone meds and poke the system a bit, it falls apart and can then reveal what the problem is - implying that low T4 was always my original problem and my body was increasing rT3 to slow everything down and compensate for not having enough... which is why I didn't have low T4 originally. Or something.
Anyway, at the moment I just need to feel better and get rid of these symptoms and then reevaluate. But I'm v confused. I'm doing bloods again in January, including rT3. And I am sleeping much better with minimal symptoms again after a couple of weeks of levo/T4 50mcg, on top of the T3. I still have slight symptoms (buzzing feet, hands going a bit numb sometimes in sleep) but they are mild enough to sleep through.
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Hi Joziel, thank you for the detailed update & I'm sorry to know you're still having problems.
I've never known someone on T3 who hasn't had a prior diagnosis of thyroid disease so your situation is difficult to interpret & uncharted territory for me!I had bloods done after 9wks on T3 (waited 18hrs since the last dose to test, tested in the Am, fasted, no biotin etc..!)... And whilst my rT3 had come down to 15 (borderline ok), and my T3 had gone up slightly (still not in top of range), my T4 had plummeted: Now my free T4 was 9.7 (range 12-22) - it had been 18 before - and my total T4 was 54 (range 59-154).
I imagine your low T4 results were due to your supplementing with T3, as with more active thyroid hormone in the body there would be less call for your thyroid gland to produce T4. Can I ask what your TSH was at the time of the TFT that showed the low T4? Did the endocrinologist comment on the reduction in your rT3? I don't understand what's going on there.
I'm now v confused about whether I do/did have a conversion problem or whether I do/did have a genuine thyroid problem.
That makes 2 of us! I can't remember all the detail of your situation before you started T3, but as you know I was worried about your possibly starting on T3 without the certainty of a diagnosed thyroid disorder.
Some people say that if you don't really have anything wrong with your thyroid and you take some T3, it will stop your thyroid working and maybe that's why my T4 plummeted and I got the second bunch of results
It was always my understanding that the thyroid gland eventually atrophies on replacement because it's effectively been made redundant by the influx of exogenous thyroid hormones. I think my GP must have told me this at the time of my thyroid surgery as I wasn't referred to an Endocrinologist until some years later, but I've never come across any research papers confirming that & how long the process takes I don't know, though presumably longer than the few weeks you've been taking T3. Any continuing autoimmune attack would also contribute to the gland's demise over time, but if you don't have raised thyroid antibodies (sorry, can't remember for sure) that shouldn't apply to you. I've been on thyroid replacement for nearly 30 yrs, since just before hemithyroidectomy & indeed the 2 ultrasound scans I've had in the past 15 years or so have shown there's virtually no thyroid tissue remaining from the half originally left intact, but that will presumably also be partly a consequence of the Hashimoto's.
yet I also wasn't taking enough by itself to compensate. (I mean, I should have been on a proper T3 dose, not a micro 5mcg 3x/day dose.) That makes me think maybe I can come off these meds at some future point...?
You're actually on 3 times the dose of T3 I currently take (together with T4) though I did need 10mcg daily to feel well when I was younger. My current T3 dose is roughly physiologic; a healthy gland is said to produce approx 13/15:1 T4:T3, depending on the source you read, as you know the rest is produced by conversion elsewhere in the body. One 5mcg dose seems to be as much as my body can tolerate at this age, though it doesn't keep my T3 within range. T3 is said to be roughly equivalent to 3-4 times the strength of T4, so your 3 x 5mcg dose would equate to 45-60mcg Thyroxine, as I expect you know. You're right, some thyroid patients do take a much higher dose of T3 split across the day, especially those on T3 monotherapy & many patients on T3-T4 combination therapy take 2 or 3 doses of T3 a day, in both cases because of its short half life. The dose of either thyroid hormone required is very individual, but a person's weight & any residual thyroid function will have some bearing on it.
If you start to feel overtreated on the T4-T3 combination (consistently too hot, anxious, fast & possibly irregular heart rate, insomnia, racing thoughts, passing large volumes of urine, excessive appetite, feeling dehydrated, unexplained weight loss), please flag it up to your doctor. Obviously some of these symptoms can be due to menopause, so it can be difficult to be sure, but better to err on the safe side.
Please let us know how you get on Joziel.
Floral, I'm sorry for all this detail, but Joziel has raised these concerns here so I wanted to try to think them through with her. Please don't worry about any of this, if it turns out you do have a thyroid problem (hopefully not) it's usually not as complex to treat as it might appear here!
Wx
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I think it's all useful to everyone because thyroid stuff is complicated and the more you read about different people's circumstances, the more you come to understand it really. Not that I understand what is going on with me...
I can't do the quote-y thing Wrensong... Will do this instead:
"I imagine your low T4 results were due to your supplementing with T3, as with more active thyroid hormone in the body there would be less call for your thyroid gland to produce T4. "
One way or another, the low T4 results were due to the T3 - but whether the T3 supplementation has 'caused' them or uncovered the real issue, is the question. Because I wasn't given enough T3 to be sufficient by itself. The doctor didn't want to put me on a full dose of T3 - because the idea was to boost what my body was doing and to clear the high rT3 - rather than to replace what my body was doing. The worry about giving me a full dose of it is that I could just end up on thyroid meds ongoing, when (if it were a conversion problem) I didn't really need that. There are other sources online where people with high rT3 and conversion problems are given T3 to clear the rT3 - but they are given regular doses of it, not the micro dose I was given. (See the last few sentences here: https://neuroendocrinology.org/what-is-the-reverse-t3-syndrome/ ) And why my T4 then plummeted despite my body needing more T3, I've no idea.
"Can I ask what your TSH was at the time of the TFT that showed the low T4? "
Normal, always normal TSH. That time it was 1.15. (The highest it's been was 3.4, that was before any medication.)
"Did the endocrinologist comment on the reduction in your rT3? "
Yes, we are happy about that - the T3 brought down the rT3 as planned, from 33 to 15. It should really be lower than that, but 15 is borderline okay. I am re-testing rT3 in January, even though it takes ages to get the results back for that and has to be a venous draw. Because now I'm taking T4/levo, I want to check I'm not just going to convert that to rT3 again(!).
"but if you don't have raised thyroid antibodies (sorry, can't remember for sure) that shouldn't apply to you. "
I don't have raised antibodies, they've always been very safely low.
In case I don't convert T4 to T3, we've kept the T3 dose the same for now. (Seeing that was the original problem.) If I'm converting it, I think I'll get what I can from T4 and just top up a little with T3. Although the doctor says that NDT is the best choice for the majority of people so I might end up switching and trying that. The T3 is ridiculously expensive, it's about £250 for 2-3 months supply. Compared to £17 for levo!! I'm definitely not feeling over-treated yet but it can take some weeks for that kind of thing to happen...
Whatever the heck is going on, I'm now convinced this is totally thyroid and not estrogen-related. Well, estrogen did play a role in causing this: I think my thyroid has been struggling for years as that's how long my cold feet and hands, slow metabolism, constipation, and putting weight on whilst eating ridiculously little has been going on. (I'm not overweight, but that's because I'm so stubborn and would just fast if I gained weight. In the long run, this has made everything worse for the reasons outlined here. But it was the only way to not gain weight, when you're basically eating an apple a day or something and still gaining weight...). So - all that has been going on for many years. But I just thought it was just 'me' and that's how I was. (Dur.) And any tests at the doctors where they would only test TSH and Free T4 were always fine....
Then I hit peri-menopause and started estrogen, testosterone and progesterone - and my poor thyroid couldn't deal with the increased metabolic demands of all that. (I'd been on desogestrel for 10 years due to endo, which had kept all my hormones low.) And that's when I got the symptoms and crashed. So - HRT played a role here, but it wasn't really the cause of it. I'm pretty sure that's what's going on. The only thing which has had any impact on my symptoms, is thyroid meds. Taking T3 originally and now, adding in the T4 as well. It's not all perfect yet, but it's SO MUCH better. I think in itself, that is proof that what I have going on, is thyroid.
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Hi Furyan, I'm sorry to be so late replying. Was away from the forum for a while & just trying to catch up. I'm so glad you're aware of the low carb dangers as regards thyroid function. How are you doing now?
Btw, I read somewhere that the NHS are trying to stop prescribing T3 because the costs rocketed. They’re even trying to get existing patients to go onto T4 monotherapy. Is this true? I’m just wondering if your regime might be something to consider in the future if sourcing NDT gets too costly… x
There was widescale withdrawal of T3 prescribing by the NHS from around 2018 because as you say, the price went stratospheric with a monopoly on production/supply. I was lucky to get mine reinstated because my Endocrinologist intervened with the CCG informing them I met the criteria for continued prescribing, but yes many patients were put back onto T4 monotherapy. The pharma company involved was later heavily fined for the price hikes, in 2021 I think. The price of T3 has since been reduced & the monopoly has thankfully ended, with a number of brands back on the market. It's still expensive compared to Thyroxine, but for those of us who can't convert Thyroxine well enough it's essential.
Wx
Hi Wrensong, thanks for asking. It’s a mixed bag atm as I’m trying to get the HRT steady and continuous whilst finding my optimal thyroxine dose! I split my NDT to morning and early evening but since I increased the dose last week (only by 1/2 grain) I’ve noticed faster heart rate after the second dose when trying to fall asleep. Tonight is worse as I’m feeling a bit warmer too and taking ages to fall asleep. Reason I’m confused is because I don’t know whether this is because I’m now taking too much NDT or just taking the second dose too late. Maybe I should take it in the afternoon? Tonight is more confusing because I foolishly increased my progesterone due to slight spotting during the day.
Btw, I can’t remember which of you mentioned a thyroid doctor here, but I’ve booked to see her in the new year. Had enough of trying to balance HRT and thyroid like this, it’s way too complicated and anxiety-provoking to do alone. This doctor seems to know more about the thyroid than others and it’s a bonus that she knows about HRT too. The appointment couldn’t come soon enough…
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Hi ladies, Good golly gumdrops😬 thyroid or menopause? aren’t we so lucky to be landed in the valley of hormones😫
Wrengsong abs no need to mention posting as I’m learning from others. We are all unique and may have to trial stuff to get to a good place.
Joziel & Furyan I am sorry to hear of how difficult thyroid issues are for u both and really pray you both get sorted soon. Menopause is enough on its own!!
My issue really kicked off after covid vaccine, and then covid virus - total hell, my whole system got mucked up, I would begin to feel better and then crash again and this has been a pattern and each crash has created more fatigue along with hair loss, freezing feet, dizzy spells, low blood sugar symptoms, low mood sometimes extreme, anxiety, palpitations and sweats, low stomach acid, low digestive enzymes, low appetite, mood swings and more, I have never been affected as badly in all my years of going through meno SO I do think my thyroid is not working properly.
Joziel your thyroid issue mirrors mine - tests look ok but for low T3, how long ago since you developed real issues? I was in touch with P. R (uk author) not sure if allowed to name? on thyroid especially T3 and he said even though my TSH & T4 etc were ok, because my FT3 is very low and I’m symptomatic then it’s hypo and I’d need T3 in some form. I did see on a utube video that few things can cause conversion probs one being a vaccine, virus, others were inflammation, gut issues list goes on…..abs pain in the rear!!
I am not sure what my answer will be but I need a life again🙏🏻 my apt with Dr C is not until beg of Feb. This recent crash left me on sofa for 10 weeks.
Please post ladies it helps others.
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Yes I think there are some similarities with our results Floral. My first results in detail (before any thyroid meds) were:
TSH 1.37
Free T3 3.9 (3.1-6.8)
Free T4 18.6 (12-22)
rT3 32 (8-31)
That lowish T3, combined with the high rT3, is what made us suspect a conversion problem - given T4 seemed good. I haven't had Covid. I had just the first 2 AZ vaccines but that was a good almost-year before all this started. I have very good ferritin levels now (211) after an infusion in February, to rule out iron deficiency. My cortisol was very normal on the 4-point saliva test.
After those results I was given 5mcg of T3, 3x a day. My advice to you would be: Make sure you are not left on this baby dose of T3 for ages, like I was. Things were much better at first and then it all went pear-shaped and next bloods - after 9wks of that T3 were:
TSH 1.15
Free T3 4.3 (3.1 - 6.8)
Free T4 9.7 (12-22) LOW
Total T4 54 (59-154) LOW
Thyroglobulin antibodies 14.9 (0-115)
Thyroid Peroxidase Antibodies 12.8 (0-34)
rT3 15 (8-31)
After that I was given levo/T4 50mcg, on top of the T3. I am doing much better after 3 weeks on that. I still wake frequently during the night and sometimes startle a bit before falling asleep. And I still have the symptoms but they are much less (heart beats less fast, less often, tremor is much more faint and easier to sleep through, feet less cold etc). So I feel like I'm finally on the right path but it's going to take some experimentation.
I'm also going to increase my Oestrogel to 6 pumps as I was only at 283pmol with 4 pumps and I want to get up to 400-600pmol just incase that's a factor...
Why is your appt not until February? Is that what the online appointment calendar shows? It's worth re-checking that because there are cancellations that come up and also they make more dates available sometimes. It's also worth getting the rT3 done, because they send that to the US to be processed and it takes 14 working days to get the results back - about 3 calendar weeks. And you need to have that result before your appointment with Dr Conway. It all gets much easier if you don't need rT3 as you can do a finger **** test and get results back in 2 days instead of organising venous draws and waiting 3 weeks...
What I've learnt from all this is that interpreting thyroid stuff seems to be more of an art form and an experienced-hunch kind of a thing than a science really(!!!). I'm convinced there are many other women out there around this time of life struggling with undiagnosed thyroid stuff just because the doctors they see don't understand this or run enough tests to reveal it all. They get stuck in menopause forums and groups, thinking it's all menopause. But whilst that could be a factor (see my situation where it put lots of stress on my thyroid to start HRT) the thyroid could well be the underlying factor for them too...
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Joziel, don't worry about the quotes facility, what you've done instead is fine :).
Good that your TSH on T3 was not suppressed despite the T3 therapy.
Yes, as you say it takes some time for Thyroxine to exert its effects, but that's more applicable to situations where the patient is hypothyroid. As your TSH is already close to bottom range on T3, indicating you have plenty of thyroid hormone in your system, what I'm thinking is that adding any extra, this time in the form of Thyroxine, could quickly render you effectively hyperthyroid. I imagine your doctor has warned about this possibility, but do please look out for any indication of it so you can flag it up if it happens before it makes you feel terrible.
Wx
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Hi Furyan
I split my NDT to morning and early evening but since I increased the dose last week (only by 1/2 grain) I’ve noticed faster heart rate after the second dose when trying to fall asleep. Tonight is worse as I’m feeling a bit warmer too and taking ages to fall asleep. Reason I’m confused is because I don’t know whether this is because I’m now taking too much NDT or just taking the second dose too late.
Yes, absolutely, difficult to be sure & I've been in the same situation when taking a 2nd dose of T3 later in the day.Maybe I should take it in the afternoon?
Yes you could shift it to earlier in the day or perhaps try reducing the 2nd dose to 1/4 grain, if you can split the tablet. The T3 in it is stimulating, keeping you awake & will be boosting your metabolism, raising heart rate & making you hotter. Long time since I took NDT & can't remember how small the tablets are to know whether this is feasible for you?Tonight is more confusing because I foolishly increased my progesterone due to slight spotting during the day.
Yes, again that adds to the difficulty for you in working out what's happening - progesterone can increase body temperature & research shows it can have a thyroid boosting effect, whether that explains the former I'm not sure.
Good luck with the appt.
Wx
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Hi Floral,
Wrengsong abs no need to mention posting as I’m learning from others.
Good, that's one of the the great things about the forum, lots of experience & knowledge shared :).
Sorry you have quite a wait for your appt, but at least something is in the pipeline now that will hopefully prove helpful. Sounds as though you've been having a very difficult time of it.
Wx
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Thanks Joziel for all the info. I am not looking fwd to the juggling as I’m bad enough! I will def send of tomorrow for the RT3 test👍 Also I’m praying for cancellations. Hope this regime works out for you🤞I’m not expert but doesn’t increasing estrogen mess with thyroid?
Wrengsong, my heart races even though my FT3 is low, P Robinson states this as a symptom of low but it can also cause slow heart rate. This is so confusing😶
I just want my body to be at ease again.
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Hi ladies, Good golly gumdrops😬 thyroid or menopause? aren’t we so lucky to be landed in the valley of hormones😫
Wrengsong abs no need to mention posting as I’m learning from others. We are all unique and may have to trial stuff to get to a good place.
Joziel & Furyan I am sorry to hear of how difficult thyroid issues are for u both and really pray you both get sorted soon. Menopause is enough on its own!!
My issue really kicked off after covid vaccine, and then covid virus - total hell, my whole system got mucked up, I would begin to feel better and then crash again and this has been a pattern and each crash has created more fatigue along with hair loss, freezing feet, dizzy spells, low blood sugar symptoms, low mood sometimes extreme, anxiety, palpitations and sweats, low stomach acid, low digestive enzymes, low appetite, mood swings and more, I have never been affected as badly in all my years of going through meno SO I do think my thyroid is not working properly.
Joziel your thyroid issue mirrors mine - tests look ok but for low T3, how long ago since you developed real issues? I was in touch with P. R (uk author) not sure if allowed to name? on thyroid especially T3 and he said even though my TSH & T4 etc were ok, because my FT3 is very low and I’m symptomatic then it’s hypo and I’d need T3 in some form. I did see on a utube video that few things can cause conversion probs one being a vaccine, virus, others were inflammation, gut issues list goes on…..abs pain in the rear!!
I am not sure what my answer will be but I need a life again🙏🏻 my apt with Dr C is not until beg of Feb. This recent crash left me on sofa for 10 weeks.
Please post ladies it helps others.
Thanks Floral, your prayers are appreciated! It’s so difficult balancing thyroid and HRT isn’t it? I’ve had pretty dark times mood wise recently as I’m missing my normal life -have had to delve deep to reach my faith as I’ve been forced to let the things that I enjoy go for the time being. Interesting what you say about the vaccine - I had it March 22 and symptoms that I now know were thyroid related began. In my case, lots of factors conspired to cause this crash, thankfully I’m now aware of lots of them so making lifestyle adjustments accordingly. I just need to find a way to manage the low energy and fatigue while I’m building up to my sweet spot - I was given the heads up on another forum that I won’t be symptom free until then.,.
Re: low FT3, all it takes is for that to be lower than optimal for us to be hypothyroid regardless of what TSH and FT4 are. There are lots of (particularly) women who report this…
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Wrengsong, my heart races even though my FT3 is low, P Robinson states this as a symptom of low but it can also cause slow heart rate. This is so confusing
Yes that's right Floral, usually low T3 causes the metabolism to slow down, so heart rate is often lower than normal in hypothyroidism, we tend to feel cold, retain fluid, gain weight, have sluggish digestion & low mood. But the stress our bodies are put under by various kinds of untreated or poorly managed health conditions (including hypothyroidism) can sometimes cause the heart to race too.
Many menopausal women with normal thyroid function find they have episodes of uncomfortably raised heart rate too, sometimes thumping harder, or the feeling of irregular beats & flutters & often accompanied by feelings of anxiety or panic. Sometimes an increased heart rate can occur during flushes & night sweats. It can happen whether we are on HRT or not & being on the wrong dose of HRT can affect our heart rate too. I agree it can be very confusing & quite a few symptoms of thyroid disease & menopause overlap so this is one of the difficulties for doctors & patients in distinguishing between the 2 possible causes. For those of us already on thyroid replacement menopause can be especially confusing as our thyroid dose may need to change as a result of the changing sex hormone levels.
There's a link here on how to reduce stress with breathing technique, it might help you feel more in control when you're conscious of a racing heart. Learning how to meditate & can also be really helpful. I did that during peri & it really helped me.
https://www.nhs.uk/mental-health/self-help/guides-tools-and-activities/breathing-exercises-for-stress/
Wx
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Hi FuryanI split my NDT to morning and early evening but since I increased the dose last week (only by 1/2 grain) I’ve noticed faster heart rate after the second dose when trying to fall asleep. Tonight is worse as I’m feeling a bit warmer too and taking ages to fall asleep. Reason I’m confused is because I don’t know whether this is because I’m now taking too much NDT or just taking the second dose too late.
Yes, absolutely, difficult to be sure & I've been in the same situation when taking a 2nd dose of T3 later in the day.Maybe I should take it in the afternoon?
Yes you could shift it to earlier in the day or perhaps try reducing the 2nd dose to 1/4 grain, if you can split the tablet. The T3 in it is stimulating, keeping you awake & will be boosting your metabolism, raising heart rate & making you hotter. Long time since I took NDT & can't remember how small the tablets are to know whether this is feasible for you?Tonight is more confusing because I foolishly increased my progesterone due to slight spotting during the day.
Yes, again that adds to the difficulty for you in working out what's happening - progesterone can increase body temperature & research shows it can have a thyroid boosting effect, whether that explains the former I'm not sure.
Good luck with the appt.
Wx
Before reading this, I experimented with taking 1/2 grain mid-afternoon rather than later. I didn’t suspect that I needed to reduce the dose because I have hypo symptoms in every other respect. Also, I read somewhere that until I have optimal T3 my body might sometimes release adrenaline, which causes palpitations and feeling warmer. Anyway, what was interesting with taking dose 2 earlier, is that it stopped my afternoon slump and gave me a nice flow of energy. But I’ve now started to feel cold and a little weak near bed time tonight and I'm wondering if it’s a reflection that I need to increase my dose soon. It’s only 8 weeks in of going back on NDT, people tell me it’s early days!
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Thanks Joziel for all the info. I am not looking fwd to the juggling as I’m bad enough! I will def send of tomorrow for the RT3 test👍 Also I’m praying for cancellations. Hope this regime works out for you🤞I’m not expert but doesn’t increasing estrogen mess with thyroid?
Wrengsong, my heart races even though my FT3 is low, P Robinson states this as a symptom of low but it can also cause slow heart rate. This is so confusing😶
I just want my body to be at ease again.
Yes, fast heart rate can be a symptom of low T3 because it was also happening to me during my crash. As I understand it, the adrenals can release adrenaline when T3 is low, it’s a coping mechanism because the body is understandably under stress. Doesn’t happen all the time, but it’s potentially a symptom for some of us as well as the usual slower heart rate.
Re: oestrogen, this is exactly why I dialled back slightly on the oestrogen recently while I work on optimising my thyroid. Studies suggest it’s oral oestrogens that are the main issue for thyroid meds, but I’ve also recently read that (too high) oestrogen can impact on the meds too - unlike progesterone which, as Wrensong said, enhances the circulation of thyroid hormones. It’s a bloody minefield and feels horrible to navigate especially during these cold, winter months. I can’t wait to see the thyroid doctor - I just want me back!
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Furyan
Anyway, what was interesting with taking dose 2 earlier, is that it stopped my afternoon slump and gave me a nice flow of energy. But I’ve now started to feel shivery and a little weak near bed time tonight and I'm wondering if it’s a reflection that I need to increase my dose soon.
Good that it helped you get through the afternoon more easily, but yes, probably too soon after increasing dose only last week to know whether you'll need a further increase just yet I'd have thought.
Yes many articles state only oral oestrogen affects thyroid levels via increasing TBG but quite a few of us on here have found we need to tweak our thyroid dose in response to changes of even transdermal oestrogen, so I wonder whether there may be other mechanisms involved as well that are yet to be uncovered. My sense is that it's mostly those of us on some form of T3 who tend to have more probs balancing thyroid meds with HRT. I've noticed it's increasingly being stated that transdermal may just be less likely to affect thyroid status than oral oestrogen, suggesting there's less certainty about possible interactions these days. Perhaps depends on genetic differences & individual biochemistry as to how we metabolise the two in tandem. We can only be vigilant & try our best. Easier in postmenopause, in theory anyway! Sorry can't remember whether you're peri or post.
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Furyan
Sorry can't remember whether you're peri or post.
I’m over three years post
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In my eyes, it all has to be optimised anyways, so I may as well get the estrogen to where it needs to be sooner rather than later. I'd hate to get my thyroid all lovely - and then increase estrogen and mess everything up again. ;D Just like those on T4 and T3 may need to increase one and reduce the other, the sex hormones are just other hormones we need to dial up/down as well. Yes, there can be interactions - but since the symptoms I have can also be due to estrogen fluctuations (needing a higher level to override those fluctuations), I'd rather increase estrogen too.
I'm pretty sure it's mostly thyroid for me though - it's when I've done things with thyroid meds that I've seen the symptoms change. Increasing estrogen has done nothing. (At 5 pumps and counting now.)
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Ah, you're postmeno too Furyan. Should be easier for us to manage the 2 together at this stage (I'm a decade+ postmeno) than it is for women in peri. I found cyclical HRT postmenopause on T4 & T3 much more difficult to manage than continuous, but had to go to cyclical as I became increasingly progesterone intolerant.
Wx
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Ah, you're postmeno too Furyan. Should be easier for us to manage the 2 together at this stage (I'm a decade+ postmeno) than it is for women in peri. I found cyclical HRT postmenopause on T4 & T3 much more difficult to manage than continuous, but had to go to cyclical as I became increasingly progesterone intolerant.
Wx
I can’t tolerate the typically recommended doses of progesterone (100 or 200mg daily) for the oestrogen I use (currently just over 2 pumps). That’s why I use Cyclogest so I can cut the pessary into 60-75mg doses that I manage much better. I know this forum is mostly aimed at balancing our sex hormones but this last year and recent crash taught me that absolutely nothing will settle until my thyroid is more balanced. I figured that tweaking HRT (especially any increase) at this stage won’t allow me to feel the effects of NDT dosing as well, so I’m putting up with those remaining meno symptoms until such time! Kinda hoping that thyroid balance will bring better sex hormone balance. It’s a pity you can’t tolerate progesterone well, a thyroid enhancer by all accounts. Can I just ask - how come you changed from NDT to T4/T3 combined? Asking because I’m booked to see the same person some of you mentioned here and suspecting it’s something that I may have to consider depending on what my bloods show from being on NDT.
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I'm doing pretty rubbish at the moment :'(
I did great on T4 for about a week, with my symptoms all hugely improved and sleep being possible again. And now it all is getting bad again. So my guess is I am converting the T4 I'm taking into rT3 again. (This was my original problem, with my own T4, so it makes sense I would do this.) I don't think the doctor wanted to just put me on high doses of T3 only without at least trying me on T4 and T3....
The problem is my next bloods are start of January and then it will take about a month to get the results back because the rT3 has to go to the US to be processed. So my next appt isn't until the start of Feb, which seems frigging ages away.
I really think I need T3 only - and a normal dosage of it. She only gave me a micro dosage originally and then freaked when it took my T4 to nothing and put me on T4 as well. When really I just needed much more T3... But unless I want to go all cowboy with this and order myself T3 from Mexico(!!!) I have to jump through the hoops and show her what it's doing with my bloods. Sob. :'(
Furyan, Dr Conway will prescribe NDT if you want/need that. Or T3 and T4. Or T3 only. Whatever works for the individual.
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Glad you are finding Cyclogest tolerable Furyan, does the lower dose give you adequate lining protection or have you started it too recently to have been scanned yet??
I think you're right to prioritise getting your thyroid optimised as it's fundamental to our wellbeing & yes our ability to get the most from HRT will be compromised if any thyroid condition we have is not well managed.
It’s a pity you can’t tolerate progesterone well, a thyroid enhancer by all accounts.
I think that may have been part of the problem for me - the fact that it boosts thyroid status, as I felt horribly hyper on Utrogestan.
Can I just ask - how come you changed from NDT to T4/T3 combined?
We never managed to get me feeling at all well on NDT, but it was in the early years of peri when I was really struggling with overwhelming menopause symptoms. My current endocrinologist doesn't prescribe NDT but that's fine by me as I seem to get on better with Liothyronine & Thyroxine. There's also the issue that although the NHS would far rather none of us needed any T3 containing medication, Liothyronine is less controversial than NDT & I'm lucky that my need for it is established so that I get it prescribed on the NHS. Still have to get levels tested privately though, as the NHS won't usually monitor blood levels of T3 even for those of us they accept need it. One of my TFTs earlier this year showed my T3 to be well below 3 (on T3 replacement), so that I have probs converting Thyroxine is not really disputable! Tbh I'd far rather not need any controversial meds, thyroid or HRT, as we can all do without any obstacles to our health needs & repeatedly coming up against them & having to argue our case can be extremely stressful & tiresome.
Wx
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Floral, your prayers are appreciated! It’s so difficult balancing thyroid and HRT isn’t it? I’ve had pretty dark times mood wise recently as I’m missing my normal life -have had to delve deep to reach my faith as I’ve been forced to let the things that I enjoy go for the time being. Interesting what you say about the vaccine - I had it March 22 and symptoms that I now know were thyroid related began. In my case, lots of factors conspired to cause this crash, thankfully I’m now aware of lots of them so making lifestyle adjustments accordingly. I just need to find a way to manage the low energy and fatigue while I’m building up to my sweet spot - I was given the heads up on another forum that I won’t be symptom free until then.,.
Re: low FT3, all it takes is for that to be lower than optimal for us to be hypothyroid regardless of what TSH and FT4 are. There are lots of (particularly) women who report this…
« Last Edit: November 27, 2023, 08:16:44 PM by Furyan »
Hi Furyan,
I am well post menopause and I had wondered why in earth i was having all these symptoms and now I’m thinking that the thyroid is involved.
I have tried to increase estrogen and felt ten times worse!!
I understand totally how you feel re missing out on normal life, it will come back again once we get sorted.
Also when I had the crash 3 months ago, I experienced the most excruciating dark lows, and zero motivation which for me was very abnormal, I had a difficult peri/meno but this was off the charts. I had to resort to couch for weeks. One symptom I struggle with is my body not feeling relaxed like it used to, it must be adrenaline or? due to low T3?? I have read this can be a symptom of hypo too.
You are right to see a specialist to be guided, it’s far too much for us to sort on our own. I paid privately to see an Endo short time ago and because TSH and T4 were ok he dismissed me but I’m learning that this is common. Thyroid treatment and diagnosis needs to be given an overhaul.
I may have apt with same specialist as you G. C? Best wishes going forward x
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Joziel, I’m so sorry to read your post today, such a nightmare and the waiting!
Do you think it would be ok to be on higher T3. How did YOU actually feel after initially going on the T3, were you improving but for blood results?
I rang Meg today and she said I didn’t need to do RT3 at this stage🤷♀️
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Joziel
I'm doing pretty rubbish at the moment :'( I did great on T4 for about a week, with my symptoms all hugely improved and sleep being possible again. And now it all is getting bad again. So my guess is I am converting the T4 I'm taking into rT3 again. (This was my original problem, with my own T4, so it makes sense I would do this.) I don't think the doctor wanted to just put me on high doses of T3 only without at least trying me on T4 and T3....
How difficult for you. I wish I knew how to help, but the use of thyroid hormones in patients whose health probs don't stem from a disease of the thyroid gland itself is beyond my experience. If the doctor you see is the one you recommended to Floral I see she's a mainstream medic & has experienced hypothyroidism herself, both reassuring, so I really hope she can sort this out for you.
Wx
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It remains to be seen if it's a disease of the thyroid gland or not really. At some point, a conversion problem is a disease of the thyroid gland if there is no reason for it...Certainly my doctor thinks I am hypothyroid based on my last bloods with a very low T4 and that this is the 'real' problem which my previous results were just masking. However, there are people who are poor converters and just turn all T4 into rT3 and I worry I'm one of these. But I can't diagnose myself after just 2 weeks of T4 - maybe it will all get better. Perhaps it is still building up in my system and I just had an initial spurt when I started on it.
And yes, Dr Conway is who I've recommended. I probably should stop recommending her because she's getting busier and busier and it's getting harder to see her ;D ;D She's an NHS GP half the week and runs her private practice thyroid clinic the other half.
Floral, you can still do rT3 if you want to and if you're just waiting around it might be a good time to do it. They told me I didn't need to do rT3 again this time, but I'm very glad I am - or I'd have no way of knowing if I'm converting the T4 they just put me on, into rT3. So I insisted on testing it again. If I'm converting okay, I won't test it next time...
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Wrengsong thank you. It’s a tough one knowing what’s causing what!
I am 62 I am on 75 patch Estrogen only, bloods 208, I get racing heart in the mornings wakening me up and sweats but when I try to increase Estrogen, I feel awful. Also have this unease in my body which is def physiological, Anyone any ideas? I am thinking it’s thyroid at the root.
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Floral, you could be writing what I'm feeling there. I often wake up with a heart beating hard and faster than usual, it wakes me from sleep. Sometimes in the night, sometimes in the morning. And there is an unease like a very low electrical current which makes it hard to relax and sleep. The only thing which impacts these symptoms, is thyroid meds. I've done all kinds of shenanigans with estrogen and progesterone and T, to no avail.....
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It remains to be seen if it's a disease of the thyroid gland or not really. At some point, a conversion problem is a disease of the thyroid gland if there is no reason for it
Sorry Joziel, don't get me wrong - what I meant was that you've said you've always had normal TFT results (rT3 aside, which is not yet routinely measured, though who knows, that may change) with no raised antibodies & thankfully you haven't been diagnosed as having disease in the thyroid gland itself. I'm not disputing your rT3 results or that you have been feeling very unwell & I agree that thyroid hormone conversion problems can be problematical for health. That's why a small subset of hypo patients are put on T3. I just don't know how to help in your circumstances is all I meant. :hug: It must be distressing & frustrating for you, but if you feel on the same wavelength as your doctor, that's half the battle. She is conventionally trained so her qualifications are good. The trial & error & waiting between meds changes for test results are hard to bear I know.
Wx
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Yes, I know what you mean Wrensong. But I think it's not so clearcut when there is/isn't a thyroid problem. I did have low T3, which another doctor said would be a problem even without the rT3 result, for eg.
Sometimes there aren't obvious or clearcut divisions between 'ok' and 'not ok' on thyroid results and it can all be a bit of an art form. Dr Conway said sometimes our bodies 'mask' what's really going on because they are trying to keep everything stable as much as they can, so results can be difficult to interpret by regular GPs. (Even if they actually tested for everything, which they don't.)
For sure, I've had some of these symptoms the best part of 10 years (cold feet, taking hours before I can get to sleep waiting for feet to warm up!), slow metabolism (eating ridiculously little), constipation.... But I just thought all that was 'me'. My thyroid has been a problem for a very long time, whatever the results have been. After my very first T4 dose, my feet were warm and I didn't need the electric blanket - unfortunately this hasn't continued and after a week I'm back to cold feet and everything else, but the fact that the thyroid meds influence and affect these specific symptoms I have, is enough evidence to me that it's thyroid... I think I need a normal/decent dose of T3 without any T4. Whether I can stop that at some future point and function normally without it, I don't know. I could try. But first steps first... I kinda feel like I'm now taking something which is making me worse (T4) but I don't think - after just 2 weeks - the doctor will approve me stopping it and raising T3(!).
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Joziel
Sometimes there aren't obvious or clearcut divisions between 'ok' and 'not ok' on thyroid results and it can all be a bit of an art form.
After nearly 3 decades on thyroid replacement I couldn't agree more, that's why it's so important to take symptoms into consideration as well as results.
results can be difficult to interpret by regular GPs. (Even if they actually tested for everything, which they don't.)
I agree, but NHS GPs are in a difficult position, being constrained by questionable guidelines on prescribing & testing for thyroid conditions, which in effect can be the patient's tragedy, especially for those who aren't able to persuade a GP to do an Endocrinology referral & don't have the means to go private. I feel very strongly that the complexity of thyroid conditions & the misery they can cause when not well managed are not widely recognised. Add another poorly understood, interacting condition into the mix - menopause - & women can have a helluva time of it trying to get the right help to achieve anything like acceptable QOL.
Wx
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Wrengsong thank you. It’s a tough one knowing what’s causing what!
Yes, Floral I absolutely agree.
I am 62 I am on 75 patch Estrogen only, bloods 208, I get racing heart in the mornings wakening me up and sweats but when I try to increase Estrogen, I feel awful.
Remind me, did they take your ovaries on hysterectomy? Can you describe in what way increasing oestrogen makes you feel worse? In that case have you tried a lower dose patch in case 75 is too much for you at this age? Your serum level of 208 is not high but some women feel better on less as they age & women who've had BSO (me included) seem to have a particularly hard time of it optimising HRT. My gynae has advised aiming for oestradiol of 300+ but like you, I feel worse on higher doses. Have you tried testosterone? Some women on here report feeling better for adding progesterone after hysterectomy with BSO, though this is not usually thought necessary. Have you ever taken progesterone (before hysterectomy) to know how that makes you feel? Some women find it calming & that it complements the effects of the oestrogen in their HRT. Not me though - my body hates the stuff! Sorry so many questions.
Wx
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Wrensong, total hyster. Have not tried progesterone other in mirena and was tried on a contraceptive pill one time which both had dire consequences!
I have history of pmdd/pmt and postnatal so not sure if that rules prog out even more?
I’m thinking I might try lower dose though I’m getting hot flushes again since switching from oral to patch and have night sweats too….cud this be too much?
I feel my body is trying to regulate if that makes sense. Thank you for kindly replying
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I'm doing pretty rubbish at the moment :'(
I did great on T4 for about a week, with my symptoms all hugely improved and sleep being possible again. And now it all is getting bad again. So my guess is I am converting the T4 I'm taking into rT3 again. (This was my original problem, with my own T4, so it makes sense I would do this.) I don't think the doctor wanted to just put me on high doses of T3 only without at least trying me on T4 and T3....
The problem is my next bloods are start of January and then it will take about a month to get the results back because the rT3 has to go to the US to be processed. So my next appt isn't until the start of Feb, which seems frigging ages away.
I really think I need T3 only - and a normal dosage of it. She only gave me a micro dosage originally and then freaked when it took my T4 to nothing and put me on T4 as well. When really I just needed much more T3... But unless I want to go all cowboy with this and order myself T3 from Mexico(!!!) I have to jump through the hoops and show her what it's doing with my bloods. Sob. :'(
Furyan, Dr Conway will prescribe NDT if you want/need that. Or T3 and T4. Or T3 only. Whatever works for the individual.
So sorry to hear it’s gone downhill again Joziel. Your gut feeling is probably right that you do need T3 but what else can we do when waiting so long for an appointment? It doesn’t seem that long but it IS when battling with thyroid problems like this. How come you feel like you have to jump through hoops to show her your need for T3? I know many people do order their own (like me!) but it’s not something I could recommend if you’re already being monitored because there could be other things going on. I have done it in the past and currently with NDT because these thyroid crashes leave me desperate for the energy to function for just basic daily routines so I understand where you’re at. Sending positive vibes and prayers to you too! X
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Glad you are finding Cyclogest tolerable Furyan, does the lower dose give you adequate lining protection or have you started it too recently to have been scanned yet??
I think you're right to prioritise getting your thyroid optimised as it's fundamental to our wellbeing & yes our ability to get the most from HRT will be compromised if any thyroid condition we have is not well managed.
It’s a pity you can’t tolerate progesterone well, a thyroid enhancer by all accounts.
I think that may have been part of the problem for me - the fact that it boosts thyroid status, as I felt horribly hyper on Utrogestan.
Can I just ask - how come you changed from NDT to T4/T3 combined?
We never managed to get me feeling at all well on NDT, but it was in the early years of peri when I was really struggling with overwhelming menopause symptoms. My current endocrinologist doesn't prescribe NDT but that's fine by me as I seem to get on better with Liothyronine & Thyroxine. There's also the issue that although the NHS would far rather none of us needed any T3 containing medication, Liothyronine is less controversial than NDT & I'm lucky that my need for it is established so that I get it prescribed on the NHS. Still have to get levels tested privately though, as the NHS won't usually monitor blood levels of T3 even for those of us they accept need it. One of my TFTs earlier this year showed my T3 to be well below 3 (on T3 replacement), so that I have probs converting Thyroxine is not really disputable! Tbh I'd far rather not need any controversial meds, thyroid or HRT, as we can all do without any obstacles to our health needs & repeatedly coming up against them & having to argue our case can be extremely stressful & tiresome.
Wx
Ah that makes sense Wrensong - I mean, if your current thyroid regime works, why mess with it? I’m interested to see what said doctor will suggest when my bloods are done in January, by which time I’ll likely be hitting just over 3 grains of NDT. I’m also curious what that dose will do to my T4 level. Either way, I know my body is craving T3 as I naturally have high energy needs. I look forward to each raise! Perhaps I should have been offered combined T3 and low T4 from the outset when I was first diagnosed because the NHS endos grudgingly diagnosed me given my thyroid profile at the time. I’d consider it instead of NDT so long as they don’t mess with my T3!
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Glad you are finding Cyclogest tolerable Furyan, does the lower dose give you adequate lining protection or have you started it too recently to have been scanned yet??
Had a scan in August which showed healthy lining of 3.3cm. And that would have been based on taking Utrogestan every other day vaginally the previous year, which equates to around 50mg daily. I figured this dose of Cyclogest should be ok, but I’m prepared to go for 6 monthly scans if need be just to be on the safe side.
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Floral, your prayers are appreciated! It’s so difficult balancing thyroid and HRT isn’t it? I’ve had pretty dark times mood wise recently as I’m missing my normal life -have had to delve deep to reach my faith as I’ve been forced to let the things that I enjoy go for the time being. Interesting what you say about the vaccine - I had it March 22 and symptoms that I now know were thyroid related began. In my case, lots of factors conspired to cause this crash, thankfully I’m now aware of lots of them so making lifestyle adjustments accordingly. I just need to find a way to manage the low energy and fatigue while I’m building up to my sweet spot - I was given the heads up on another forum that I won’t be symptom free until then.,.
Re: low FT3, all it takes is for that to be lower than optimal for us to be hypothyroid regardless of what TSH and FT4 are. There are lots of (particularly) women who report this…
« Last Edit: November 27, 2023, 08:16:44 PM by Furyan »
Hi Furyan,
I am well post menopause and I had wondered why in earth i was having all these symptoms and now I’m thinking that the thyroid is involved.
I have tried to increase estrogen and felt ten times worse!!
I understand totally how you feel re missing out on normal life, it will come back again once we get sorted.
Also when I had the crash 3 months ago, I experienced the most excruciating dark lows, and zero motivation which for me was very abnormal, I had a difficult peri/meno but this was off the charts. I had to resort to couch for weeks. One symptom I struggle with is my body not feeling relaxed like it used to, it must be adrenaline or? due to low T3?? I have read this can be a symptom of hypo too.
You are right to see a specialist to be guided, it’s far too much for us to sort on our own. I paid privately to see an Endo short time ago and because TSH and T4 were ok he dismissed me but I’m learning that this is common. Thyroid treatment and diagnosis needs to be given an overhaul.
I may have apt with same specialist as you G. C? Best wishes going forward x
Same to you Floral - about going forward with this, which we will! It’s a horrendous time feeling low with thyroid stuff, which only compounds the HRT problem. Incidentally, I wonder if, by taking the high dose of oestrogen you mentioned, this negatively impacted your thyroid? Too high oestrogen can do that. If only there were more ‘experts’ available for us to check these things out because the waiting game can also be a nightmare when you’re suffering. And the way thyroid issues are traditionally dealt with by the medical profession is often as ghastly as the condition itself.
Like I say - we’ll get there. Thankful for sharing ideas here as well as the encouragement and understanding. xx
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There is definitely an interaction between estrogen and thyroid stuff which I think deserves to be explored and trumpeted way more.... There are undoubtedly many other women like us out there who haven't yet figured out the thyroid involvement and are just suffering. When I understand what the heck is going on, I might contact Louise Newson and ask to go on her podcast ;D just to get the word out more.
For me, this all began only when I started HRT. I'd had the cold feet and slow metabolism, constipation, dry skin for years and years before - but I just thought that was me and got on with life, given my TSH and free T4 was always normal and doctors didn't seem bothered. I was on the desogestrel POP for 10 years which kept all my hormones quite low. (To suppress endo.)
Then I came off the POP and started HRT and after 3 weeks, I got all these terrible nighttime symptoms I'm still battling. And they seemed to get more intense with each dose increase, so I ended up in A&E when I went to 75 for the first time. Of course at first I thought it was the HRT and the estrogen and I spent ages carving up patches and slowly slowly raising things... to no avail. I even stopped it totally for 5 months, thinking I'd get back to how I was before, then - but nope, that wasn't happening either - I just got low estrogen symptoms as well(!). So I went back on it again and this time things didn't get any worse when I increased. I actually seem to absorb it very poorly so need quite a high dose to get a decent amount (now on 5 pumps of gel).
But I faffed around with all that for sooooo long. Then I did B12 shots every other day, buying them online from a German pharmacy and self-injecting at home just to rule out B12 deficiency. I checked folate and D3 (fine). I had an iron infusion in February as I couldn't get ferritin over 62 orally. (Now it's 211 and I still have these symptoms.)
Which is all to say, whilst it began after starting HRT, I now believe it was the HRT (estrogen) and thyroid interaction which caused all this. My thyroid was struggling and only just getting by and adding estrogen in and it couldn't manage....
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I did what you did Joziel -since March 22 going on HRT following a thyroid crash, actually thinking the crash was due to my need for HRT! Over the past year, been faffing with oestrogen doses and completely baffled by rapid weight gain and fluid retention etc. whatever dose I used. Fast forward to another crash in September and seeing my thyroid results from the A&E admission - it was very clear to me what the main issue was all along. To think, this wasn’t helped by my GP telling me to reduce my thyroid meds because he thought I was hyperthyroid! (my TSH has been suppressed since taking any form of thyroxine). It’s frustrating because I think it’s about high time that medical professionals actually LISTENED to their patient’s lived experiences rather than dogmatically follow numbers from a lab (which differ up and down the country anyway!). Having said that, there are some who genuinely do what they can to help and understand - the person behind the setting up of this forum for example. I do trust (not just for me) that once our thyroids are at least stable, this will give the foundation needed to tweak HRT to a level that’s optimal.
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Totally. I'm also really aghast that GPs are just using TSH and (if you're lucky) free T4 levels to try to dose people, and then only giving them levo/T4 and no T3. I'm in a lot of thyroid FB groups and there are so many people suffering, this is really scandalous.
I'm doing better again now. I wonder if what happened is that I started the levo and my body was a bit 'hurrah, this is what we need' and I had an immediate good reaction to it - but of course it's not going to be enough right away and takes up to 6 weeks to be maximally effective, so then I crashed a bit again with symptoms coming back. But now I've been on it about 3 weeks and the last 3-4 nights have been good. Not perfect or symptom-free but much better, with much lighter symptoms - I can actually sleep about 5-6 hours of good quality sleep. So unless this all gets worse again, I'm going to stick with what I'm on now until bloods are done in January... at least this will all be useful information for the future. (What I'm doing with levo/T4 and whether I'm able to convert it.)
I'd like to try NDT if we confirm for sure that thyroid stuff is what I need, because then I get T1, T2 and calcitonin as well and no synthetic fillers....
Does anyone know if we can take levo along with utrogestan orally at night?? Just because I have a high calcium breakfast so ideally should take my levo 4 hours before that, so it would be better for me to take it at night...
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Floral
Have not tried progesterone other in mirena and was tried on a contraceptive pill one time which both had dire consequences! I have history of pmdd/pmt and postnatal so not sure if that rules prog out even more?
Progesterone probably best avoided then.I’m thinking I might try lower dose though I’m getting hot flushes again since switching from oral to patch and have night sweats too….cud this be too much?
Do you know what your oestradiol level was on oral before you switched to patches & how long is it since you changed from one to the other? Sorry if you've told us this already, it's a few days since I was on here & haven't reread the thread to refresh my memory.
Wx
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Furyan
I look forward to each raise!
Sounds as though the NDT suits you well.Had a scan in August which showed healthy lining of 3.3cm.
I'd say v sensible to scan to see how the change to Cyclogest affects the measurement & like you, I think I'd want to repeat at 6 months initially.
Wx
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Joziel
now I've been on it about 3 weeks and the last 3-4 nights have been good. Not perfect or symptom-free but much better, with much lighter symptoms . . . So unless this all gets worse again, I'm going to stick with what I'm on now until bloods are done in January
Good to hear you've had some better nights & that that leaves you feeling you can stick to the plan agreed with your doctor. :)
Wx
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Morning ladies, hope it’s ok to jump on this thread.
Last Wednesday I had a GP apt as I’ve been having headaches, nausea and feeling starving for a month, no vomiting and paracetamol stops headache so not serious. Bloods were taken and on Thursday I got all normal results apart from these:
TSH 0.118. range (0.34-5.6)
T4 <2. Range (7.7-15.1)
T3 11.6. Range (4.3-6.8 )
GP spoke to Endocrinology dept at the hospital who told him to refer me for thyroid scan this week and to stop all HRT until they see me.
I really don’t want to stop HRT and risk going back to the peri nightmare. I haven’t stopped the 4 pumps of Oestrogel and Utrogestan. Has anybody been advised to stop HRT please?
Thanks.
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Hello AmandaJR, I'm sorry you have this new worry. Your TFT is pretty unusual looking, so can I ask please are you on any sort of thyroid medication or meds for any other condition apart from HRT? I completely understand your feelings about stopping HRT & can only suggest you ring the Endocrinology dept & ask to speak to the secretary of the clinician whose advice this was, explain your predicament & ask whether it is essential that you stop HRT immediately.
Wx
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Thanks Wrensong. I’ve just received the scan referral letter so have the department contact details, I’ve left a message asking for a call back.
I’m not on any medication other than HRT. I’m hoping the scan will happen quickly so that peri symtoms don’t kick in if I really have to stop taking the HRT.
Thank you for helping.x
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No problem Amanda. That you are not on any other meds is helpful to know, thank you. Yes, let's hope the scan happens quickly & you get the answers you need. Please let us know how you get on.
Wx
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Hi Wrensong and thanks.
I changed to patches about 3 months ago, I’m on 75mcg, estrogen only I am post meno total hyster age 62, my E level just over 200. On 2mg tablet it was about 470 but it increased SHBG. I think it’s my thyroid, my FT3 low for some reason and I’m waiting on a specialist apt for that. I tried increasing patch to 100 and I was on overdrive and very tearful. I feel my body is out of balance. I still have night sweats and racing heart on patch and also had these on tablet. I now have hot flushes in the evenings. It is so consuming not to feel well and no energy. I think my thyroid has been declining since covid, could it be that if I increase estrogen it affects the thyroid more? I’m not on any T meds yet. Tk you!
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Hi Floral, thank you for the summary. OK so you've been on 75mcg patches 3 mo, with a recent oestradiol level of 200-ish, which is less than half what it was on oral oestrogen, but increasing your patch dose to 100mcg made you feel worse. You had night sweats & racing heart when your oestradiol was 470 & still have them following your most recent much lower oestradiol result. If the evening hot flushes are new, coinciding with the lower oestradiol level, it could be that your body needs a little longer to adapt to the lower level or that perhaps your sweet spot lies somewhere between 470-200. If you think you may need more oestrogen, you could try increasing to 87.5 if 100 was too much.
could it be that if I increase estrogen it affects the thyroid more?
It's really difficult to know, Floral. In theory, transdermal oestrogen shouldn't affect thyroid status (according to research into the effect of oestrogen on Thyroid Binding Globulin). But a few of our hypothyroid members - the impression I get is that it's those of us on T3 as well as T4 - have found that we do have to tweak our thyroid replacement when our HRT dose changes. It could be that there are other mechanisms involved that are not yet recognised in the medical literature. As I mentioned on here recently, I'm seeing more & more articles stating that transdermal HRT is just less likely to affect thyroid status, rather than categorically that it doesn't.
A healthy thyroid should be able to compensate for the effects of HRT on the body, but if there is a possibility that your thyroid is not working as well as it should, then it does seem possible your thyroid hormone status could be affected by your HRT. Hopefully the thyroid clinic can help you get to the bottom of what's going on. You mention Covid & with that now in the mix for many people, I think researchers may be learning about the long term effects for some years to come.
I'm sorry I can't say anything with much more confidence, Floral. Joziel's situation with the rT3 testing is unlike any I have come across before, endocrine conditions can be very complex, especially with more than one ongoing & all of us - patients, doctors & researchers, are still learning about how it all interrelates.
I’m not on any T meds yet.
Do you mean testosterone or thyroid meds? If testosterone, as you've had BSO you will have lost all ovarian androgen output. The ovarian contribution makes up a hefty proportion of the total women produce & is thought to continue to benefit our health in various ways long postmenopause, so you may well feel better for adding a little Testosterone to your HRT regimen if you haven't yet tried it. There is mention in various articles that some women find T helps with night sweats & therefore sleep & my first menopause specialist back in 2015 cited it as beneficial for sleep, but it's not one of the effects it's usually prescribed for. If you feel unbalanced on oestrogen replacement alone, testosterone may help with this.
I'm in a similar position to you, with no ovaries, persistent night sweats with all the horrible trimmings & consequent insomnia, so I know how much this horrible problem can dominate our lives & the frustration & distress it causes when whatever we try doesn't fix it. :hug:
Wx
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Wrensong thank you for all that input, I appreciate it and you are so right re thyroid complexities!!
Well I put on a 100 everol this morning and gosh by 1pm I had to take it of, I felt so sick and more anxious it was dreadful.
I’m freezing cold despite having stove lit and a heated throw plus water bottle. I pretty sure thyroid trouble and increasing E is not good! I was on T but I came off as my levels were high and I want to get other hormones sorted first🤞
I’m sorry you still have trouble, have you tried increase re the night sweats and sleep?
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Furyan, just reading over posts and you are abs right re low FT3 and adrenaline, that’s exactly what I get, and low FT3 is symptom of hypo as P Rob has confirmed.
Like you & Joziel, I am not going to be well until this is sorted, I just wish we didn’t have to go through this as well as meno x
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Floral - it sounds v similar to me, what with the ongoing symptoms which you try to increase E for, but then they just get worse when you do...
For me, it turned out to be thyroid. (Pretty sure now.) I am still doing much better although not perfect and I probably need more tweaks to my thyroid meds in the new year. If it turns out that I do need some levo/T4 then I need to also think about whether I want to try NDT or stick with T3/T4. Dr Conway will support either but is v v supportive of NDT. I'm not sure what the cost of NDT is compared to T3, if anyone knows....?? T3 is ridiculously expensive. Like 3 months worth seems to be about £250...
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Joziel, indeed your present regime will indicate what you need and even if you do need to tweak, at present you are heading in right direction thank goodness!!
Iv had a horrible 2 days after a reasonable 2 or 3🙄 I can’t wait to get off this ride! I just wish waiting apt times weren’t sooo long!
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Just jumping in to say grateful for you starting this thread Floral. I've been hypothyroid for 23 years but I think some of my suffering currently is to do with it (before I was ok on levo alone). My doctor told me TSH is all that's required to be tested and said it tells you everything. I listened to his logic, but having started reading this thread I now see there ARE actually reasons to test all, T3, T4 and TSH.
I've bought my own kit from Thriva, just have to find the time to do the test now.
Anyway, grateful for all the wisdom here.
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Floral
have you tried increase re the night sweats and sleep?
if you mean increasing my oestrogen dose, then yes.
Have you tried a lower dose of oestrogen than 75mcg? Even though your last oestradiol result, if 200-ish, wasn't high, some women find they feel better on really quite a low dose & if you're in your 60s maybe 75mcg is too high for you at this stage of your life? Being on the wrong dose will be stressful for the body, which might explain some of your symptoms.
Wx
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Karashanon, yes I think we are all learning a lot, we have to be our own medics a lot of the time! To an extent thyroid is way behind regarding treatments. Healthunlocked is a great forum for info and guidance.
Wrensong, thanks yes was thinking yesterday I might try reducing to 50 it may help until I have my appointment. Slept from midnight to 9am and I’m still so fatigued🙁
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Ps. I mentioned Healthunlocked - yes for thyroid but of course this forum is fabulous with such helpful, caring members with great knowledge and I for one am very grateful💐
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Sorry I haven’t come back sooner ladies, I’ve been very wobbly with symptoms recently. I had my first consult with Dr this week and felt very reassured this is all ‘normal’ within the context of unbalanced thyroid and sex hormones and raised cortisol. The conversation helped me piece together all the previous research I’d done more smoothly. That said, I have to be PATIENT whilst the body settles on each thyroid dose. To help manage the adrenal stress response (what I’d called my ‘thyroid crash’) I was advised that the ultimate way to calm that is to optimise my thyroid and to nourish the adrenals. Regarding the latter, ashwagandha was recommended as one option, which I tried for the first time last night. Guess what - it worked to calm the cortisol down! Last night is the best night of sleep I’ve had in a long time.
However - and this is where HRT comes in - couple nights ago I also switched from taking Cylogest back to Utrogestan orally. Long story short, I read more on the connection between oral progesterone and mood and helping with the stress response (in my case, rapid heart beats, raised cortisol etc..). I then remembered that when I first took oral Utro on starting HRT, my palpitations were immediately calmed. Anyway, just wondered if it would be the same - within 1/2 hour of taking it, the heart and anxiety calmed. Adding the ashwagandha last night probably enhanced that hence the great sleep. I’ve also slightly increased the NDT by 1/4 grain.
Time will tell what this all means for my symptoms and the horrendous mood dysregulation I’ve been experiencing over recent weeks, I’m praying the tweaks will work in tandem to give me the changes I’m looking for.
I’d just want to echo the reassurance that whatever unbalance we’re uniquely facing with the thyroid and other hormones, don’t lose hope that you will reach a sweet spot that is good enough for you. If you can please work with someone who understands this stuff, if only to get that reassurance and to save you the hassle and isolation of doing it alone.
We WILL get there! 🙏🏽
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Furyan, just reading over posts and you are abs right re low FT3 and adrenaline, that’s exactly what I get, and low FT3 is symptom of hypo as P Rob has confirmed.
Like you & Joziel, I am not going to be well until this is sorted, I just wish we didn’t have to go through this as well as meno x
It can feel very confusing Floral. And lonely. The relationship between thyroid, sex hormones and adrenal hormones is an intimate and finely balanced one. Hence the ‘tired but wired’ experience! I wish I’d had just one set of hormones to deal with rather than adding the complexity of menopause too! This is why (for me anyhow) forums like this are good because we get to share ideas with people who know what it’s like. Put that together with (appropriate) specialist support, we will get there. x
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Furyan,
I’m so pleased for you reading your post, sounds like you really needed this guidance. Calming your body will calm your mind and that alone must be very beneficial to balancing things. Interesting re the progesterone and I’m wondering if a little would help me even though iv no womb, but I’ll have to wait until my apt.
Yes it is confusing Furyan and lonely and frightening at times. Mornings are my worst.
Did you do the 4 point saliva testing for cortisol? I did and mine rocketed from morning one to lunch and then Stabilized.
My mood and energy, well let’s just say I’m struggling terribly🙁
I look forward to reading how you progress and send you my very best wishes, you are getting there x
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That sounds great Furyan... I take 2x utrogestan every night and it does nothing for sleep for me. (I can take zero, 1, 2 or 3 utrogestans and it makes no difference. I've even tried deliberately taking them with a biscuit (food) as apparently that helps absorption - nope... I'm not going to complain because at least I also have zero negative side effects from taking it and I know a lot of people do.)
And I tried ashwaganda for some months without any difference either. I've spent a fortune on 5HTP, melatonin, L-tryptophan, Holy Basil and ashwaganda ::)
I'm doing reasonably okay at the moment. I fall asleep relatively easily but I wake frequently during the night. Last night it was every 2 hours and sleep quality was rubbish. Or sometimes I wake once, around 5am, and then my sleep after that is rubbish light and dozy sleep. And I can feel a slight inner tremor and my heart beating faster than usual when I wake, so I think it's these symptoms waking me up. They are much better now I'm on 50mcg of levo and 15mcg of lio/T3. I think I need a dose increase though, but have to wait for bloods in January.... :o
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Joziel just wanted to say I’m thinking of you and it sounds as though things are improving at least, it’s natural to need tweaks along the way.
I just wish my apt was sooner!
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Floral, I hope the reduction in oestradiol helps while you are waiting for your appt. Seems worth a try anyway. I'm envious of your long night's sleep, but persistent fatigue is horrible, I agree.
Wx
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Furyan, it's always good to hear a thyroid patient has found a doctor they can work well with & I think what you said here is great advice
I’d just want to echo the reassurance that whatever unbalance we’re uniquely facing with the thyroid and other hormones, don’t lose hope that you will reach a sweet spot that is good enough for you. If you can please work with someone who understands this stuff, if only to get that reassurance and to save you the hassle and isolation of doing it alone.
Wx
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Wrensong, I decided to stick with the 75 for now as I’m having fluctuations and I’m afraid of rocking this unsteady boat any more!!. I have so many symptoms of low thyroid in my case FT3, early 2022 it was near 6 (no treatment) last 2 results 4 and 3.9 and I’m feeling worse.
Yes I put a meditation tape on when I go to bed but it’s like I’m knocked out and don’t sometimes even rem taking off my head phones, that part is good BUT to feel like iv never slept when I arise is the not so good part😬 I managed to pop out today but my legs are now weak and I felt yuk. Better times are ahead, I’m grateful for the small achievements.
Thank you, you are always helping others x
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That's kind of you Floral, but it's what we're all here for, though tbh I often feel I've not been able to help much. Just I know how hard menopause can be for women with a thyroid condition & how isolating if we feel we're not being heard.
FT3, early 2022 it was near 6 (no treatment) last 2 results 4 and 3.9 and I’m feeling worse
That's a big difference & if you felt well at 6, I'm not surprised you've felt low at 3.9. What a pain you have so long to wait for your appt. If you're in a position to take a short notice cancellation could you perhaps ask them to let you know if they have a slot they need to fill?
Wx
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This is all so confusing, I’ve no idea whether strange thyroid results are due to peri fluctuations, aging, a reaction to HRT or a faulty thyroid that was always going to happen. ???
Am trying to not over think this whilst waiting for an Endo / Consultant apt. The waiting is hard, trying to keep the lid on my anxiety box is testing!
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What strange thyroid results would they be, Amanda?
I would say though that strange thyroid results, in terms of results/tests are... thyroid related! (Not peri fluctuations, aging, HRT etc.)
By the way, endos don't really know much about thyroid stuff so don't get your hopes up. They often refuse to prescribe T3, don't want to prescribe much of it, and won't prescribe NDT either. Frankly, what I've found about thyroid stuff is even worse than menopause care. And it doesn't have the big ground swell Louise-Newson and Nigella-Lawson effect behind it to rectify things.
I recommend the book 'Stop the Thyroid Madness' and Dr Conway at The Thyroid Clinic. I think I lucked out, finding these resources...
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Wrensong, yes it is a big jump in terms of T3, iv had these episodes and I’m sure with each hit my thyroid has been affected and also I’m that bit more symptomatic each time. My first apt is a longer one so it’s not as easy to get a cancellation but 🤞 I’m a bit better past week just ticking along and I’m very grateful for that!
Amanda I wish you luck with your apt.
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What strange thyroid results would they be, Amanda?
I would say though that strange thyroid results, in terms of results/tests are... thyroid related! (Not peri fluctuations, aging, HRT etc.)
By the way, endos don't really know much about thyroid stuff so don't get your hopes up. They often refuse to prescribe T3, don't want to prescribe much of it, and won't prescribe NDT either. Frankly, what I've found about thyroid stuff is even worse than menopause care. And it doesn't have the big ground swell Louise-Newson and Nigella-Lawson effect behind it to rectify things.
I recommend the book 'Stop the Thyroid Madness' and Dr Conway at The Thyroid Clinic. I think I lucked out, finding these resources...
Thanks for the recommendations, i was looking at both over the weekend during yet another hormone research session. Sadly I too came across lots of stories of bad experiences with thyroid related endocrinology care. I’ve no experience, never needed to see an endocrinologist but need to know why my TSH & T4 are very low yet T3 is far too high. My GP has been brilliant so I’m going ahead with the NHS for now.
Just re-read this thread, I don’t have the same symptoms as other posters which is making me nervous! I also noticed that my TFT a year ago was extremely similar to yours and Floral’s and nothing has happened this year to explain the change now. I am pleased to see that you’re feeling a bit better, I really hope it continues to improve.
Floral - I’m so pleased your week has been a bit better too, I hope this continues and that this appointment comes around quickly.
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Hi Amanda, I totally get your worry, doubt, frustration etc. As u may have seen my FT3 is low and most of my life is on hold atm plus although my hrt also not optimised or working right. I don’t want to touch it as it may be thyroid throwing it off🤷♀️roll on apt!
Have you posted your results on HEALTHUNLOCKED forum? They are v knowledgable. I echo all that Joziel said. There is also a v good FB forum ‘THE THYROID PATIENTS MANUAL’. run by Paul Robinson uk author - v knowledgable.
Thank you for good wishes🌻
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I'm also doing rubbish at the moment. I am finally able to sleep rather than lying awake for hours, but my body doesn't want to let me go into deep sleep still. So I just do light dreamy-sleep... and wake up feeling still tired.
Every time I start to fall into the proper deep sleep I so much need, I'm instantly awake. This isn't happening as violently as before when I was having hypnic jerks, now is just just a psychological thing where my mind is instantly alert. And after that's happened a few times, I just stop trying to go into the deep sleep because I guess my brain has decided that's not safe.
This is all thyroid crap, I'm sure of it now. Because it's only when I start or raise thyroid doses that these symptoms are affected. It is much better than before but I know I need an increase desperately and I have to get bloods done at the start of Jan and then wait an entire month for an appointment (because it takes 21 *working* days to get the rT3 result back). :'(
Floral, I've requested to join that FB group...
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Hi Ladies.
Floral, thanks for replying. I hope you’re still on a good / better week. Yes the frustration, confusion and trying to not let anxiety heighten is tough going, I agree with you there! I totally understand your aprehension around HRT too, I believe thyroid, HRT and our own hormone state are entwined but I don’t understand enough yet. Hopefully professionals will set up a treatment plan and get us feeling great again soon.
Thanks for the FB recommendation, I joined yesterday and haven’t heard back yet but I’ve read quite a bit about the author. I can’t book The Thyroid Clinic yet as they can’t refer me to an Endo and I need scanning, possibly a biopsy etc but she does sound good.
Healthunlocked have been amazing, they advised me to see a private endo to get seen faster, I am trying to find one as I’m losing weight rapidly.
I hope you continue to feel a bit better and get a decent weekend.
Joziel, sorry you’re not feeling great. Sleep deprivation is awful and makes getting through just basic days really hard work. I really sympathize as I have a well worn insomnia T shirt! I hope you can get rest over the weekend.
Did your doctor advise you of how long it’ll take the new meds to settle in? It’s great that you’re seeing good improvements for the symptoms that nothing else has affected before, that’s a great indication that you’re on the right track.
Looks like we’re all in the frustrating waiting game :-X :'(
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Joziel, it will take time to regulate from what I read and I for one am not looking fwd to trying! Patients are unique AND specialist views vary too, it’s crazy!
Good you have joined Paul’s forum hope it helps.
Amanda, thanks for good wishes, I’m just about plush for now.
Are you hyper, as you are losing weight? X
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Hi Floral, great that you’re feeling good! I’m on a good day too so far!
Not sure about weight loss yet, I’m eating loads yet hunger is constant. Endo apt is this week so hopefully I’ll get some answers.
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Finaly got Endo referral, please excuse typos as I’m half asleep.
Got told to come off HRT because of tests they need to do, cortisol was one of the, Iodine deficiency another.
I’ll be amazed if it’s Iodine deficiency since I eat a lot of fish. But I’ll find out on Friday.
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Yeah... sadly I wouldn't put much stock in the vast majority of endos from what I've read.
I'd be refusing to come off HRT for one. I bet it was a male doctor.... Since our bodies produce these hormones anyway, there's no real reason to come off them for the majority of other tests to be run. They're not going to give a pre-menopausal woman a chemical menopause to run cortisol and iodine tests on her.
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Amanda, I really hope your Endo apt goes well, do let us know. Do you feel energetic? as high appetite etc goes with hyper rather than hypo though I’m sure you know that.
I wouldn’t say I feel good it’s more ‘better’ than I was, it’s these crashes iv been getting and now my energy is limited. Think I have a conversion issue as in my T4 not converting to main T hormone FT3. It’s been horrible I just want to be ME again🙏🏻
Best wishes for now x
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Furyan, just reading over posts and you are abs right re low FT3 and adrenaline, that’s exactly what I get, and low FT3 is symptom of hypo as P Rob has confirmed.
Like you & Joziel, I am not going to be well until this is sorted, I just wish we didn’t have to go through this as well as meno x
The thing with low T3 is that it puts huge stress on the adrenals, which then potentially adds to symptoms such as volatile blood-sugar, adrenaline surges, high cortisol release etc. These are what cause the ‘crashes’. I read a subsequent post of yours where you mention you feel freezing cold too - this isn’t only a low T3 symptom but could also be due to unstable cortisol. I’ve also discovered that hypothyroidism potentially drains us of progesterone which can then mean there’s not enough to balance oestrogen, hence symptoms of low progesterone add to the mix.
You might find this article helpful but, of course, you’d need to decide whether this describes what might be going on for you depending on your symptoms, bloods and seeing a knowledgeable thyroid doctor:
https://www.drlaurendeville.com/liver-affects-thyroid/
The article contains other useful links within it x
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Hi Furyan, thank you and yes this describes my symptoms very well and explains a lot! Thyroid has a dominos effect for sure.
I have read the article all very relevant and interesting thank you!
I have sent you a dm x
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Amanda, I really hope your Endo apt goes well, do let us know. Do you feel energetic? as high appetite etc goes with hyper rather than hypo though I’m sure you know that.
I wouldn’t say I feel good it’s more ‘better’ than I was, it’s these crashes iv been getting and now my energy is limited. Think I have a conversion issue as in my T4 not converting to main T hormone FT3. It’s been horrible I just want to be ME again🙏🏻
Best wishes for now x
Hi Floral, gawd I know what you mean about just wanting to feel like yourself again! I’m glad you feel a bit better but hope you feel back on form soon.
You put me on to the 1 to 1 coach who has been absolutely fantastic, thank you so, so much. Hyper isn’t his field but he has helped tremendously, I need to see the Endocrinologist to find the type and cause, he pretty much advised the same as The Thyroid Clinic but gave me far more info.
Yes, I’m burning a lot of energy which has demolished cholesterol/ speeded up my metabolism resulting in weight loss and constant hunger. I’ll be glad to get rid of the growling stomach.
Thank you for your help with this and I hope you can get in to see the Doc on a cancellation so that you’re seen ASAP.
Amanda.x
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Hi Amanda, I’m so pleased you are getting somewhere! Did you have apt with Paul? Great start!!
That’s what is so good about this forum, we get help and info from other members, I first posted on here and it drew my attention to thyroid.
It must be difficult for you dealing with hyper, but you will get there🌻 keep us posted x
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Hi Floral, totally agree about how helpful the forum is, I got quite a few great contacts from member recommendations.
It wasn’t an apt with Paul as he pointed out that Hyper isn’t his field but he said he could still help and did. The guy is lovely.
My Endo apt has been moved due to strikes! I was supposed to be going on holiday on Friday night but we’d already decided it was best not to go, now we’re going! Every cloud has a silver lining! X
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Hello ladies. Please can I jump on. I’m sure I’m on the journey of thyroid in the blink (likely hypo but self diagnosed as TSH and T4 and 3 within the normal range but T3 especially scraping along the bottom, folate and vit D not great either, Medichecks suggested I eat more sprouts for folate but FFS just read they ate goitre inducing, it’s a minefield but I digress). I’ve been trying to read this thread but my fatigued brain can only process so much. Whoever said about faffing around with HRT levels resonates here. This is me. Before menopause I had symptoms of feeling cold, crashing fatigue but now with menopause I’m all over the shop. Anyway, please excuse my ramblings but can anyone help me find Dr Conway’s book please. When I google Stop They Thyroid Madness another author’s name pops up. Thanks
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Dr Conway hasn't written a book. She runs thethyroidclinic.co.uk I see her privately and recommend.
If you want a book, there's Stop the Thyroid Madness and there are also Paul Robinson's books, Recovering with T3 and The Thyroid Patient's Manual.
You can easily supplement with folate and D3.
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Dr Conway hasn't written a book. She runs thethyroidclinic.co.uk I see her privately and recommend.
If you want a book, there's Stop the Thyroid Madness and there are also Paul Robinson's books, Recovering with T3 and The Thyroid Patient's
Manual.
You can easily supplement with folate and D3.
Thanks for this. I’ll buy Stop the Thyroid Madness. I didn’t want to buy the wrong book and wanted a UK one as I’ve been flitting across sites and info but wanted any recommendations to be UK compatible.
I’ve used a VitD calculator and it recommended a dosage of 4000 units x 3 months to get me up to 100 units of vit D which is recommended for me. I’m currently 70 units. Apologies but I haven’t got my head around all the different measurements yet so am just calling them ‘units’. 4000 is a high dose and it feels a bit scary to be self medicating but am feeling so rubbish am driven to resort to it. I’ve also got some B vits ordered with folate not folic acid, which apparently hypo sufferers can struggle to absorb. These were recommended on Health Unlocked forum. Still reeling from the spouts suggestion by the Medichecks GP she she was obviously basing her advice on thyroid being in range rather than not optimal and me reporting symptoms. Feels like a bloody minefield to unpick. Then there’s the menopause and the distinct possibility the oestrogen might be messing things up further. Thanks again and sorry for the rant.
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Hello ladies.
Fizwhizz - It is my understanding that cooking hugely reduces the goitregenic effect of foods. Good news if you want to cook your Brussel sprouts instead of eating them raw lol. I am also hypothyroid and eat fresh and cooked greens daily and so far so good.
I was diagnosed with Hashimoto's Hypothyroidism in 2019 after suffering from Glandular Fever. I have taken 75mg of Levothyroxine ever since and my blood work shows a low TSH and a high T4 which I understand is fine.
It's always a good idea to read up on the condition and if you learn anything relevant perhaps you can update the forum.
Wishing you well and take care.
K.
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4000IUs of D isn't a high dose at all. I take that daily and my D3 is high/optimal. Most people will need to take between 2000-5000IUs/day just to maintain decent D levels, not to correct a deficiency.
With the B vitamins, just check the amount of folate in there. Because often it is higher if you can buy folate separately, than the amount included in a B complex. (B Complexes are good and you can take that as well, but might not provide enough folate.) I take Pure Encapsulations Folate, when I need it. I can't remember what sort of folate it is but it works for me.
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4000IUs of D isn't a high dose at all. I take that daily and my D3 is high/optimal. Most people will need to take between 2000-5000IUs/day just to maintain decent D levels, not to correct a deficiency.
With the B vitamins, just check the
amount of folate in there. Because often it is higher if you can buy folate separately, than the amount included in a B complex. (B Complexes are good and you can take that as well, but might not provide enough folate.) I take Pure Encapsulations Folate, when I need it. I can't remember what sort of folate it is but it works for me.
Thanks. I feel reassured that 4000 isn’t a mega dose. It still might not be enough for me as only 50% of people on this dose hit 100 units of vit D by 3 months. I think I’m just having a bit of a meltdown with it all. I’ve been on private HRT and tweaking doses up and down for 5 years. I still felt there was something else at play plus I have fam history of thyroid issues. The HRT GP is looking to optimise these hormones but how can she if my thyroid’s on the blink. Thank goodness I trusted my gut and didn’t want to add testosterone in as well…
In my state I’ve booked an appt with Dr Conway as I can’t go on like this. I have no energy for life. I could just crawl into bed and sleep for a week. Just grappling with one of her patient info forms and not sure what test they’ll send me as I just paid but it didn’t say whether blood or saliva. Hopefully the b vits and increase in vit d will start to help too and I can claw my way back up. Thanks for your responses. I appreciate the support.
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Hello ladies.
Fizwhizz - It is my understanding that cooking hugely reduces the goitregenic effect of foods. Good news if you want to cook your Brussel sprouts instead of eating them raw lol. I am also hypothyroid and eat fresh and cooked greens daily and so far so good.
I was diagnosed with Hashimoto's Hypothyroidism in 2019 after suffering from Glandular Fever. I have taken 75mg of Levothyroxine ever since and my blood work shows a low TSH and a high T4 which I understand is fine.
It's always a good idea to read up on the condition and if you learn anything relevant perhaps you can update the forum.
Wishing you well and take care.
K.
Thanks. I did eat a few raw ones thinking I was helping but fortunately not too many.
I don’t have much appetite for food at the moment and don’t feel hungry but I’m not stressing about that currently. I think I’ve just tried to keep going and have burned out.
I have no diagnosis but these are my latest Medichecks results. From my reading around I think your levels sound more optimal. Thanks for replying. I’m feeling a bit sorry for myself at the moment. It’s the fatigue.
2.4
mIU/L
FREE T3
3.1 - 6.8 R
3.7
pmol/L
FREE THYROXINE
12 - 22 R
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Your free T3 is pretty low there. It would help to also have rT3, especially if you haven't been diagnosed with thyroid issues before. If your rT3 is high and your free T3 is low, you have conversion issues. (Many reasons for that.)
That's what's going on for me. It was a bit of an experiment to get any thyroid meds prescribed though. It's definitely not clearcut.
I don't see what your T4 is there, just the range. Is 2.4 your TSH? That's a wee bit high but not too bad.
You for sure can start testosterone, many women find it's the missing piece. I started E, T and P all together at the start of HRT - I'm with Newson. It's not going to affect thyroid stuff and can help.
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Your free T3 is pretty low there. It would help to also have rT3, especially if you haven't been diagnosed with thyroid issues before. If your rT3 is high and your free T3 is low, you have conversion issues. (Many reasons for that.)
Thanks for that my T4 is 12.6 which is near the bottom of the range. As I understand it this means I don’t have lots to convert into T3. I booked a well woman check so no anti bodies done but my folate is low and my red blood cells are enlarged so not carrying oxygen properly and my cholesterol was flagged as creeping above range as it’s 5.5 and 5 is the top.
I read that oestrogen can cause an on the blink thyroid to fail and I read something else that said HRT can support thyroid. I have no idea. All I know is I feel pretty low and rubbish currently. Like my batteries are completely flat. 🤷♀️
That's what's going on for me. It was a bit of an experiment to get any thyroid meds prescribed though. It's definitely not clearcut.
I don't see what your T4 is there, just the range. Is 2.4 your TSH? That's a wee bit high but not too bad.
You for sure can start testosterone, many women find it's the missing piece. I started E, T and P all together at the start of HRT - I'm with Newson. It's not going to affect thyroid stuff and can help.
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I think hormones put more metabolic demands on the body. If you think about it, they are kinda like natural steroids(!). If your thyroid is struggling already, it's not going to be able to meet those demands. That's how I see it anyways. I've vaguely read about more complex mechanisms but there doesn't seem any evidence one way or the other...
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I think hormones put more metabolic demands on the body. If you think about it, they are kinda like natural steroids(!). If your thyroid is struggling already, it's not going to be able to meet those demands. That's how I see it anyways. I've vaguely read about more complex mechanisms but there doesn't seem any evidence one way or the other...
I think that’s what I understood from my reading that for some the hormones add an additional burden which tips the thyroid the wrong way and for others it can be a support. I also started watching a functional medicine info reel which seemed to be saying much the same. We’re all unique and so are our problems. I think pre-meno I was having thyroid symptoms, especially feeling cold, but I didn’t link it back then. Now in menopause or probably post meno it’s a whole different story.
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I'm the same. I've had cold feet for about 10 years before all this, and slow metabolism for forever... constipation... dry skin and eyes...
I just thought it was all 'me'. Then it went a bit ballistic after I started HRT. These symptoms weren't one of my low estrogen symptoms, those were extensive and classic. So I started HRT, which fixed all those, and 3 weeks later all this s h i t started....
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I'm the same. I've had cold feet for about 10 years before all this, and slow metabolism for forever... constipation... dry skin and eyes...
I just thought it was all 'me'. Then it went a bit ballistic after I started HRT. These symptoms weren't one of my low estrogen symptoms, those were extensive and classic. So I started HRT, which fixed all those, and 3 weeks later all this s h i t started....
Similar story. I felt ok initially on HRT but I’ve been forever tweaking doses and never achieved the actual balance or feeling great that others talked about. I suppose if my thyroid is on the blink it makes sense. HRT never shifted my depression or periods of crashing fatigue. I get dizzy spells when I stand now and have started with occasional Raynuards in my right hand. I have dry skin, dry eyes, sluggish metabolism too, despite not having a great appetite and symptoms of anemia. I never could understand how people had energy to run marathons and do energetic stuff. I need to be in bed by 10.30pm just to function the next day! Like you I thought it was just normal to feel like this and it was just ‘me’. Not helped when blood tests all show ‘normal’.
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Same as you ladies, read about feeling really cold, constipation, low iron, low folate, low stomach acid, leaky gut, hair loss, headaches etc etc and suspected thyroid but TSH reported OK! Then because I’m well post meno and started getting these crashes post vaccine and covid, I began using medichecks and T4 below range in May - now 15 and last T3 3.9, my recent crash was horrendous on sofa for 2 months, it was like my body shut down, freezing feet, awful lows, dizzy standing up, no appetite, nauseous, heart having to work harder and no help from private Endo jerk. Why are we to suffer so much just because TSH in a range?!!! I’m annoyed as iv struggled to make Xmas dinner even with help, then eating it raised my heart rate that I could barely enjoy it. I’m SO terrified of crashing again and the extra fatigue and weakness that follows every crash. I really feel for anyone with this health issue it’s so darn debilitating and upsetting. Low FT3 is no joke. Here’s to our better health 2024 ❤️
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Same as you ladies, read about feeling really cold, constipation, low iron, low folate, low stomach acid, leaky gut, hair loss, headaches etc etc and suspected thyroid but TSH reported OK! Then because I’m well post meno and started getting these crashes post vaccine and covid, I began using medichecks and T4 below range in May - now 15 and last T3 3.9, my recent crash was horrendous on sofa for 2 months, it was like my body shut down, freezing feet, awful lows, dizzy standing up, no appetite, nauseous, heart having to work harder and no help from private Endo jerk. Why are we to suffer so much just because TSH in a range?!!! I’m annoyed as iv struggled to make Xmas dinner even with help, then eating it raised my heart rate that I could barely enjoy it. I’m SO terrified of crashing again and the extra fatigue and weakness that follows every crash. I really feel for anyone with this health issue it’s so darn debilitating and upsetting. Low FT3 is no joke. Here’s to our better health 2024 ❤️
I’m sorry you struggled. I similarly had a massive energy crash and was laid out on the sofa. I think in my case it was getting to the end of the school term on Friday with a difficult teen and we have a poorly elderly dog who we’re saying goodbye to. Luckily for me Amazon delivered some b vits and they’ve helped hugely and I’ve only taken them for 3 days.
Like you I’m low on folate. Medichecks test said my blood cells are too large so not functioning. Basically anaemia as I understand it.
I feel dizzy standing up and have fainted twice, have low blood pressure, and little appetite. I hadn’t equated these symptoms with anything specific.
My blood work isn’t that dissimilar to yours. Everything in normal range but TS4 and 3 low.
I second that. Here’s to a healthier 2024!
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Hi Fizz, your low folate will def not be helping, mine is ok now as that was a year ago and I’m still taking it as a supplement. The TSH is a joke as I now know.
Will you be seeking thyroid treatment?
I’m waiting.
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Hi Fizz, your low folate will def not be helping, mine is ok now as that was a year ago and I’m still taking it as a supplement. The TSH is a joke as I now know.
Will you be seeking thyroid treatment?
I’m waiting.
No, the low folate is causing anaemia in me so deffo not helping. In a complete meltdown on Christmas Eve I booked an appointment with Dr Conway to try unpick things. I’m literally falling apart at the seams in so many ways currently but life’s been a bit stressful and I have a difficult teen at home too. I’m not sure about thyroid treatment. I definitely wouldn’t get it in the NHS with my current levels. I’m just hoping for some advice to understand and put things in place first maybe like the supplements etc but if the advice is to start meds now then I would as I don’t want things to get worse.
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That’s a good move to see Dr Conway, she can then advise, hope your apt not to far away?
Stress not good for sure but sometimes it’s unavoidable.
My other bloods are now ok but I know I need treatment as life is on hold and horrid at times.
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That’s a good move to see Dr Conway, she can then advise, hope your apt not to far away?
Stress not good for sure but sometimes it’s unavoidable.
My other bloods are now ok but I know I need treatment as life is on hold and horrid at times.
It’s in March but I was in a state when I booked. I need to calmly read through everything and contact them to ensure I get the right testing kit first and also stop the b vits when it arrives and which I’ve only just started and seem to be helping massively already. Once I’ve done the tests I’ll be a bit closer to getting some support hopefully. One thing at a time I suppose. I’ve definitely hit a wall in several senses this Christmas and it hasn’t been good. I’ve lost it with the teenager’s behaviour and the dog’s going to sadly have to be put to sleep as he’s really old and struggling.
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Fizwizz,
Just a slight off track comment to send you much needed hug. I have had a year of huge losses and health problems and whilst I don't have teenager moods to work with I can fully sympathise with the imminent loss of your beloved dog, my own heart has suffered many ( still unhealed) cracks from losing much loved animals. In time be comforted to know your gave your love to him and received the same back from him too, that will always remain. X
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Fizwizz,
Just a slight off track comment to send you much needed hug. I have had a year of huge losses and health problems and whilst I don't have teenager moods to work with I can fully sympathise with the imminent loss of your beloved dog, my own heart has suffered many ( still unhealed) cracks from losing much loved animals. In time be comforted to know your gave your love to him and received the same back from him too, that will always remain. X
Thanks Sarah,
That’s so kind. It’s made me cry again. I’m really sad about the dog but it’s definitely time, for his sake. He’s nearly 17 and struggling hugely now and we know it’s the kindest thing although it’s hard. With this, my getting older and the health issues and teenage behaviours it’s been a time for grief for me personally but I’m really ever so grateful for the help and support on here.
Thank you. x
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Sadly I have been there many times. It really is the kindest, and in some ways, the most loving thing you can do for him. Shed those tears, I always think those worthy of pure love are those that deserve our tears.
I had counselling this year after the most awful events in my life and my biggest goal was to try to accept what has gone on and the effects these events have left me feeling, and it helped enormously. It didn't make things to swaying course, but has helped me cope and feel stronger. We can all grieve for many things that are personal to us. I too have had a huge amount of support on here, Take care x
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Sadly I have been there many times. It really is the kindest, and in some ways, the most loving thing you can do for him. Shed those tears, I always think those worthy of pure love are those that deserve our tears.
I had counselling this year after the most awful events in my life and my biggest goal was to try to accept what has gone on and the effects these events have left me feeling, and it helped enormously. It didn't make things to swaying course, but has helped me cope and feel stronger. We can all grieve for many things that are personal to us. I too have had a huge amount of support on here, Take care x
Thanks Sarah, that reply helped hugely. I’ve put a call into the vet so waiting to hear back. As for other things. Yes, life can be very difficult at times. This is why this forum is so supportive. Not just for the menopause advice but as a safe place to share too. I have a lot to unpick with my health stuff and family and just life stuff too. I have counselling for trauma and find it very helpful indeed. Thank you. x
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Dear Fizz, I just wanted to say you are in my thoughts, a decision no one that has a treasured pet wants to make. I went through this a couple of times🙁
Know that you cared, loved and gave him a good life.
I’m hoping and praying that both our appointments will move us on to sunnier pastures. Glad B vitamins helping you x
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Dear Fizz, I just wanted to say you are in my thoughts, a decision no one that has a treasured pet wants to make. I went through this a couple of times🙁
Know that you cared, loved and gave him a good life.
I’m hoping and praying that both our appointments will move us on to sunnier pastures. Glad B vitamins helping you x
Thanks Floral. All these messages are making me cry. I’m usually a ‘coper’ but it’s been a very difficult time on so many different fronts. Yes, it’s a sad decision but it’s for the best for the dog I feel. The b vits have been transformative in a very short space of time (4 days of taking them now). Clearly I’m at a very low point in many ways, and I had a low appetite going on anyway which I think is linked, plus now with everything I can’t face food at all. One step at a time.
On an aside, does anyone have thyroid neck swelling? I don’t think I have a goitre. I just have a weird feeling under my chin. The skin’s getting a bit saggy but I can really feel it. I’m not overweight so just wondering if it’s sagging skin/fat or thyroid connected too?
Thanks for your kindness. x
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Hi Fizz, how did things go with your dear dog? It’s the dreaded part of loving our pets😢 they give us soo much❤️
I totally understand the harder to cope thing as I’m the same and I’m like you battling through things, don’t be hard on yourself, this will get better. My appetite which was always v good has been on and off and comes with a yuk type feeling which I sometimes take an anti sickness tab for, low appetite is a symptom of low thyroid.
This morning has been awful - iv had racing heart again and getting out of bed a real struggle. Zero energy, felt so limp and low, I think it’s cortisol as it was very high rising up to lunchtime in my blood work - linked to the low FT3 no doubt.
I’m sorry I can’t help you with the neck issue, maybe others can shed some light X
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Hi Fizz, how did things go with your dear dog? It’s the dreaded part of loving our pets😢 they give us soo much❤️
I totally understand the harder to cope thing as I’m the same and I’m like you battling through things, don’t be hard on yourself, this will get better. My appetite which was always v good has been on and off and comes with a yuk type feeling which I sometimes take an anti sickness tab for, low appetite is a symptom of low thyroid.
This morning has been awful - iv had racing heart again and getting out of bed a real struggle. Zero energy, felt so limp and low, I think it’s cortisol as it was very high rising up to lunchtime in my blood work - linked to the low FT3 no doubt.
I’m sorry I can’t help you with the neck issue, maybe others can shed some light X
Thanks Floral,
It’s a sad time. I said exactly that to my husband. They give so much love and it’s unconditional and uncomplicated unlike human relationships.
Yes, being a coping type it’s difficult to not be able to do so and to let others support us. Plus those around us get used to us coping well and maybe put too much onto our shoulders at times or maybe we expect too much of ourselves too. I’m having to realise that I’m getting older and I need to reassess things and pull back. Health niggles and the menopause make you realise that self care and prioritisation is so important. Having a difficult teen with ASC makes this hard but I do need to try and put my needs first a bit more.
Yes, my appetite is rubbish now especially if I’m stressed which is often. I’m feeling so much better with the b vits complex though so that’s a small win.
Sorry you’re having a difficult time. Low energy is horrible. This was me just before Xmas. My cortisol generally runs high but I don’t get the racing heart. I’m the opposite with low blood pressure and dizziness. It’s such a minefield with all the different symptoms isn’t it?
I’m not sure if the funny feeling under my chin is just sagging turkey neck type skin or if it could be thyroid swelling. I’m just really conscious of it feeling saggy and heavy under my chin. I dunno 🤷♀️
Hope you feel brighter soon. x
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Thanks Fizz, I did have a reasonable 2 weeks on run up to Christmas thank goodness though def had to do a little at a time.
We both have apts so we shall have a bit more clarity then and how best to move forward. In the meantime look after yourself and try to preserve some energy X
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Thanks Fizz, I did have a reasonable 2 weeks on run up to Christmas thank goodness though def had to do a little at a time.
We both have apts so we shall have a bit more clarity then and how best to move forward. In the meantime look after yourself and try to preserve some energy X
Thanks Floral,
I’m like a (partial) new woman since I started the b vits. Only since Xmas Eve, eve. Thank goodness for Amazon home delivery!
Yes, I booked with Dr Conway in a complete state. I need to go through everything carefully and ensure I book the right test, send off my ID and have answered the patient questions properly. I was so fed up of feeling rubbish on Xmas Eve it’s all a bit of a blur. 🙈
It will definitely feel good to get some answers and help. My cholesterol’s on the rise too at 5.5 and my ferritin is high but my liver function, inflammation and other things were in range. I have no idea wtf is going on really but grateful that I feel a bit more energetic and with it now.
Thank you. Look after yourself too and hoping for an improvement in 2024! x
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If you're hypothyroid, it makes your cholesterol go high as well. Fixing the thyroid stuff should also resolve that...
Only one more week until my next bloods are done. Then I have to wait a ridiculous month to get the rT3 result back from the US and to see Dr Conway, but it'll be worth it. My feeling is that I need an increase of something, because whilst symptoms are improved they are still present. If I can convert T4 to T3, I'm going to ask to switch to NDT instead of taking both separately synthetically... She was very supportive of that idea last time we spoke but because I didn't know if I'd need T3 only, I got them separately....
By the way, for B vitamins, I recommend the Thorne Basic B complex. I also purchase B12 injections from Germany where they are off-prescription and self-inject every month or two. I'm not B12 deficient, I just think this is the best and most effective way to stay on top of good B12 levels as we get older and more rubbish at absorbing nutrients from the gut. But if you need help with how to buy them online from a German pharmacy, let me know. They're v cheap. It's about £70 for 100 shots.
Fiz, I hope you're okay with saying goodbye to your dog too. I have dogs too and it's just such a sad time :( Although 17 years (I think you said) is very good innings!
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If you're hypothyroid, it makes your cholesterol go high as well. Fixing the thyroid stuff should also resolve that...
Only one more week until my next bloods are done. Then I have to wait a ridiculous month to get the rT3 result back from the US and to see Dr Conway, but it'll be worth it. My feeling is that I need an increase of something, because whilst symptoms are improved they are still present. If I can convert T4 to T3, I'm going to ask to switch to NDT instead of taking both separately synthetically... She was very supportive of that idea last time we spoke but because I didn't know if I'd need T3 only, I got them separately....
By the way, for B vitamins, I recommend the Thorne Basic B complex. I also purchase B12 injections from Germany where they are off-prescription and self-inject every month or two. I'm not B12 deficient, I just think this is the best and most effective way to stay on top of good B12 levels as we get older and more rubbish at absorbing nutrients from the gut. But if you need help with how to buy them online from a German pharmacy, let me know. They're v cheap. It's about £70 for 100 shots.
Fiz, I hope you're okay with saying goodbye to your dog too. I have dogs too and it's just such a sad time :( Although 17 years (I think you said) is very good innings!
Hi Joziel,
I started reading a thyroid book and it’s responsible for so many jobs in the body all sorts can go on the blink when it’s out of kilter. I’m interested in the bad cholesterol LDL I think it is which one of the thyroid hormones I think helps clean from the blood. I’m only on chapter 2 so lots more to read.
Can I please ask you re the testing for Dr Conway? I found the website a bit confusing or maybe it was my fuzzy brain.
I booked the new patient thyroid kit I think it was called. I got the impression it was either blood or saliva and was going to e mail requesting the latter as I can’t do my own bloods. It refused to come out of my thumb doing the Medichecks test in spite of me following all the instructions. I nearly passed out trying to squeeze out a single drop.
Anyway the clinic were quick off the mark and I now have a kit. I e mailed and said I can’t do my own blood so I’m paying for a home visit which is fine. Then as I’d asked for a saliva test instead the clinic mentioned a cortisol saliva test which is a separate kit. I’m not sure if I’ve booked that. Plus I already have DUTCH gold urine hormone testing about every 9 months for the HRT. And you’ve mentioned blood going off to America. I also recently did a Medichecks Well Woman test hence me knowing my thyroid and vits are low. I’m worried about Dr Conway not having all she needs to assess and help me but also any unnecessary duplication of information and tests. Do you think I should ring the clinic as soon as they open again ? I don’t like to bother them but don’t want to find I get to my appointment and all the info’s not in place?
Thanks for the info on the B vits. I bough innegus b complex for now as that was recommended by Health Unlocked forum and was the only one that could be delivered fast by Amazon. I’ll explore other options too.
What a lot to unpick 🙈
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I've no idea about the bloods... The only test which needs to go to the US is the reverse T3 test. I don't think the 'basic' thyroid pack includes that, because the rT3 is a separate standalone test. You can request it if you want her to have that extra info - to some degree it's up to you. As I had high rT3 originally, I am continuing to get it tested until I know I'm no longer converting T4 to rT3.
There is a good cortisol saliva test available from Medichecks if you want to do that one. That's the one I did and Dr Conway accepted it.
By the way with the finger prick tests, it's best to jog up and down on the spot to get the blood flowing and also to run your hand under the hot water tap (as hot as you can bear) - it will make the blood flow to the surface better and makes it much easier. But some people still have probs..
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I've no idea about the bloods... The only test which needs to go to the US is the reverse T3 test. I don't think the 'basic' thyroid pack includes that, because the rT3 is a separate standalone test. You can request it if you want her to have that extra info - to some degree it's up to you. As I had high rT3 originally, I am continuing to get it tested until I know I'm no longer converting T4 to rT3.
There is a good cortisol saliva test available from Medichecks if you want to do that one. That's the one I did and Dr Conway accepted it.
By the way with the finger **** tests, it's best to jog up and down on the spot to get the blood flowing and also to run your hand under the hot water tap (as hot as you can bear) - it will make the blood flow to the surface better and makes it much easier. But some people still have probs..
Thanks Joziel,
I think I’ll give them a ring. I’ve only had GP NHS blood tests or Medichecks but I mistakenly did the well woman one, not the thyroid one so I don’t know about antibodies or reverse T3 as that wasn’t covered by that one. I also have the DUTCH hormone tests which do cortisol and adrenals from memory. It’s complicated once you start getting help outside the NHS and expensive. Keen to avoid duplicating testing if I can. It will be worth it though to find out what’s actually going on 🙈 plus if the thyroid is supported maybe I’ll need less HRT I don’t like thinking I might be on more oestrogen than necessary. We’ll see! Thanks for all your help. I’m not sure even with all the extra my blood will comply. I have low ish blood pressure too, maybe that’s not helping either. Happy New Year.
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If you've only had GP NHS blood tests or Medichecks, you won't have had reverse T3 tested. You can get antibodies tested with Medichecks on their Advanced Thyroid panel test.
I don't know if Dr Conway accepts the DUTCH hormone tests. I don't see her for HRT, I use the Newson Clinic for HRT and Dr Conway for thyroid stuff only. But they know each other and work well together.
Estrogen is very good for you and the effect on bone health is dose dependent. I'm on 6 pumps now, but about to do a Medichecks venous draw to see what that means for my levels. If I need to go higher I'll have to switch to Sandrena as it takes me a while to dry every morning...!
I can't wait to get bloods done next week and then there'll be a long wait to get the rt3 result back, at the start of Feb. Every time we adjust something I get better...
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Fizz I know how you feel, testing this and testing that plus conveying all info correctly in order to receive good outcome. When I completed my online Questionaire for Dr C, I know I missed stuff out so I might contact again to complete one afresh.
Reading on Paul’s group makes me anxious as it seems v hard to get things right re T3, one can only hope it won’t be too bad🙏🏻
I’m getting more fatigued week by week, I now can do v little as I’d crash it’s a horrible way to live, iv another month of waiting🙁 My cholesterol high too, I have to make sure to take B complex with good folate. Also iron as I tend to go low, so yes fizz and Joziel it’s def all linked!
Joziel you seem to be on your way to getting sorted and that’s a plus😁
We will have lots to share in near future - hopefully good🙏🏻
Still thinking of you Fizz and your loss❤️
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If you've only had GP NHS blood tests or Medichecks, you won't have had reverse T3 tested. You can get antibodies tested with Medichecks on their Advanced Thyroid panel test.
I don't know if Dr Conway accepts the DUTCH hormone tests. I don't see her for HRT, I use the Newson Clinic for HRT and Dr Conway for thyroid stuff only. But they know each other and work well together.
Estrogen is very good for you and the effect on bone health is dose dependent. I'm on 6 pumps now, but about to do a Medichecks venous draw to see what that means for my levels. If I need to go higher I'll have to switch to Sandrena as it takes me a while to dry every morning...!
I can't wait to get bloods done next week and then there'll be a long wait to get the rt3 result back, at the start of Feb. Every time we adjust something I get better...
It seems you’re in a good place with it and your understanding of what’s needed. It gives me hope for the future. I’m only nervous of increasing my oestrogen because I know it’s not the answer for me, just another piece of the jigsaw puzzle. I’d happily use Dr Conway for that too in the future. Baby steps. Good luck with the bloods. It’s great to here you’re feeling better and better.
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Fizz I know how you feel, testing this and testing that plus conveying all info correctly in order to receive good outcome. When I completed my online Questionaire for Dr C, I know I missed stuff out so I might contact again to complete one afresh.
Reading on Paul’s group makes me anxious as it seems v hard to get things right re T3, one can only hope it won’t be too bad🙏🏻
I’m getting more fatigued week by week, I now can do v little as I’d crash it’s a horrible way to live, iv another month of waiting🙁 My cholesterol high too, I have to make sure to take B complex with good folate. Also iron as I tend to go low, so yes fizz and Joziel it’s def all linked!
Joziel you seem to be on your way to getting sorted and that’s a plus😁
We will have lots to share in near future - hopefully good🙏🏻
Still thinking of you Fizz and your loss❤️
Thanks Floral,
Yes, it’s exactly that. Wanting to ensure that everything that’s needed is done but not going overboard plus ensuring all the info is conveyed accurately as well.
I’m going to ring them when the clinic’s open just to check everything I booked is right.
I wasn’t sure I answered all if the questions helpfully. It’s easy to forget stuff that might be relevant.
I have no idea about T3. All I know from my Medichecks test is my TSH is creeping up at 2.5 and T4 and T3 both low end of normal range plus my folate deficiency. Not sure if I can’t convert T4 into T3 or if I have insufficient T4 to convert in the first place or both or something else.🙈 🤷♀️ I’m trying to read up but like you I’m fatigued today. I didn’t sleep well last night and am feeling it now.
Thank you Floral. I miss him and just want everything to go back to a normal routine now.
Let’s hope we get sorted out with everything this year! 🤞
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Hello ladies
Joziel - A few years ago I.was prescribed 6 pumps of Oestrogel by Newson Health. I found it difficult to accommodate all six at once so instead I used three in the morning and three at night. This also felt a bit much so I switched to three sachets of Sandrena instead.
My blood tests showed a level of 600 (pmol/ L?) during this time and the NH doctor said that this was a good result.
I hope this helps in some way.
Take care.
K
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https://www.theinvisiblehypothyroidism.com/high-cholesterol-linked-with-hypothyroidism/
I don’t know if I’ve done this correctly to post the link. Interesting read about hypo and cholesterol
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Thanks fizz, very interesting!
The one thing I found when ordering etc with Thyroid clinic was that it wasn’t very clear, you are doing the right thing by ringing them.
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Thanks fizz, very interesting!
The one thing I found when ordering etc with Thyroid clinic was that it wasn’t very clear, you are doing the right thing by ringing them.
I’m glad it wasn’t just me that was confused. Meg has just replied by e mail and all new patients are required to have a standard set of tests carried out by the clinic, if I’ve understand her correctly. I’m just going to go with that for now as I think this is going to be an ongoing process. Thanks for the article. I read it once but need to re-read it to fully digest it. I knew your own thyroid stops working in if you start supplementing so it makes sense.
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Kathleen, thanks yes, I thought about splitting the estrogen dose... but I think my problems are thyroid related. I don't have any of the problems of low estrogen that I originally had before starting HRT, and going from 5 to 6 pumps mean I don't even leak wee now (I used to leak a few drops in the latter part of the month, that was my one remaining symptom - and vaginal estrogen wasn't really doing much for that). So, as long as my estrogen isn't sky high now, I'm going to be very happy staying at this dose. (Although might try a switch in future because it does take a while every morning to rub 6 pumps in...!)
Less than a week to go now till my next bloods... I had a bad night last night: I couldn't get into deep sleep, but would just startle awake. Then I spent the whole night in quite a light sleep, dozing. Waking many times. Heart beating hard and faster than usual. This morning my head feels thick and I'm a bit dizzy from it. This has been going on almost 2 years.
Whilst I'm so glad I've finally found out that it's my thyroid, I'm getting increasingly impatient with being prescribed enough thyroid meds to actually fix things. Initially I was only given 15mcg of T3, which is no where near enough - and left on it for about 10 weeks. My T4 crashed and we only found that when I next did bloods. Then I was given 50mcg of T4 (not a lot) and Xmas got in the way, delaying my next bloods - and the rT3 result takes forever to come back. And so here I am again.... waiting - and it's just a bit infuriating when I know that I need an increase, I can tell easily from symptoms and signs.
I find myself browsing very dodgy internet sites for buying T3 abroad. I've managed to put myself off attempting that yet (is it what it purports to be? does it have crappy fillers?) but I'm getting desperate and if I'm not given enough yet again, I'll definitely be going there... I can't go on like this.
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I hope you get things sorted out soon Joziel. It’s so frustrating. I’m so tired of feeling tired all the time. I sleep like a log and still wake up feeling tired! I thought it was normal but clearly it isn’t.
I found this interesting.
https://www.womenshealthnetwork.com/thyroid-health/why-you-might-not-need-thyroid-medication/?trk_msg=HAI4UA5E6H6KBFVVNSLRG6K1SC&trk_contact=6G2PCCANKE8F5LMDSQU2SAGNCO&trk_sid=5DIO82JK3NIHTL19GTMBQJPRJS&trk_link=M4UHSE6PI8V43BQ6CGTM4S3LTS&rvg=&utm_source=listrak&utm_medium=email&utm_term=Read+More+Now&utm_campaign=The+problem+with+your+thyroid+might+not+be+what+you+think&utm_content=CPHT
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Yeah, I'm bored of reading stuff about conversion problems - because I've been through everyone's entire list of conversion problems, and I'm doing everything on all of them, and none of it helps. From eating an optimal diet (when I can actually eat something), to taking the right supplements and getting optimal nutrients plus an iron infusion a year ago.
So all those people who think we don't need thyroid meds and can fix things otherwise can just do one, as far as I'm concerned - because I'm shaking through the night just because they think I should eat fewer carbs or something. It's just not useful.
I also now doubt a conversion problem is my issue, because my labs on 15mcg of T3 plunged my T4 below range, which really shouldn't happen. Like Dr Conway said, it's more that your body tries to get by for as long as possible and thyroid problems are actually not straightforwards to diagnose on labs. It's not just about raised TSH...
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Keep going Joziel. Your body has had a lot of changes over the last year, maybe it needs time to adjust/catch up? Your symptoms are improving gradually - you might not be far off cracking this!
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Joziel, reading your post is just how I feel!! I too do not want to read or hear of reasons for high reverse T3 and becoming low on T3! - iv tried so hard this past 2 years to FIX things because of these crashes and many other symptoms AND have spent huge amounts of money, it was only by putting my thyroid results on this thread and you ladies replying that I began looking into THYROID more and then Paul Robinsons input as well. I am now at a stage where I can do very little. The heart thing is distressing and mine can race and pound plus the heavy head I have every morning too usually developing into a headache - I alsohave sweats every day from about 6.30am but if I increase my 75 patch I feel worse🤷♀️ it’s just horrid. I get the dizzy thing some weeks now, the low blood sugar symptoms etc etc all my bloods were ok but cholesterol raised. Think iv had T issue underlying and covid sparked it big time!! Also I understand your impatience waiting and then small amounts of T3 then waiting again - I’m dreading all this when I begin to get treated - iv had to wait 3 months to get this apt in Feb, until then my life is on hold. Sad and scandalous really how poorly the Thyroid condition is treated & understood.
Fizz good luck with the testing and moving forward too.
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Thanks guys... I've got bloods on Tuesday and I've now got the go-ahead to increase my T3 from Dr Conway, before getting those results back... due to how bad the symptoms are/were. However, I've just had a few good nights and faster metabolism so now I'm worried I'm going through a slightly better time and perhaps my bloods won't look too bad LOL.... I won't increase yet if I stay as I am now with the symptoms, because I'd rather get the bloods back first and use those to decide what to do.
I've also booked an appointment for a second opinion with another thyroid doctor some of you might want to check out, because he has more availability than Dr Conway. It's Dr Momi in Ireland, but he can prescribe to the UK. His website is: https://www.functionalthyroidcare.com/about-dr-momi/ Since what is going on with me isn't the most usual stuff, and since I've been given such a low dose of T3 and left to struggle along, I just want to get another opinion on it all. He came recommended by other patients in T3 groups.
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Joziel, reading your post is just how I feel!! I too do not want to read or hear of reasons for high reverse T3 and becoming low on T3! - iv tried so hard this past 2 years to FIX things because of these crashes and many other symptoms AND have spent huge amounts of money, it was only by putting my thyroid results on this thread and you ladies replying that I began looking into THYROID more and then Paul Robinsons input as well. I am now at a stage where I can do very little. The heart thing is distressing and mine can race and pound plus the heavy head I have every morning too usually developing into a headache - I alsohave sweats every day from about 6.30am but if I increase my 75 patch I feel worse🤷♀️ it’s just horrid. I get the dizzy thing some weeks now, the low blood sugar symptoms etc etc all my bloods were ok but cholesterol raised. Think iv had T issue underlying and covid sparked it big time!! Also I understand your impatience waiting and then small amounts of T3 then waiting again - I’m dreading all this when I begin to get treated - iv had to wait 3 months to get this apt in Feb, until then my life is on hold. Sad and scandalous really how poorly the Thyroid condition is treated & understood.
Fizz good luck with the testing and moving forward too.
Thanks Floral. Like you I’m in limbo. I’m convinced my thyroid has been struggling for years too but obviously it’s never been outside the ‘normal range’ on bloods. Like you I have many symptoms. I’m waiting in my testing kits from Dr Conway and a March appointment. I’m tired and get dizzy spells and my muscles feel weak, like they have no strength. When you read what the thyroid hormones do it all starts to fall into place a bit more and it’s quite scary reading all the complications that can arise from not being treated. It’s awful when we know we’re not right that we aren’t listened to.
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The sad thing is that we are the lucky ones who have been able to figure some of this out and seek the help we need from people who are able to give it, and can also afford to pay for it. There are soooooooo many people out there who just never get diagnosed and end up on strong drugs like pregabalin (which is what they wanted to put me on!) for symptoms or who get diagnosed but stuck on levo/T4 only which they can't use or convert to T3. And even if they know they need T3, they can't get it because they can't afford it. (Despite it being dirt cheap in other countries.)
It's really pretty scandalous. It's a worse situation than HRT and menopause because there are real champions for that now and it's all over the media. The thyroid thing is much quieter and not as well known...
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The sad thing is that we are the lucky ones who have been able to figure some of this out and seek the help we need from people who are able to give it, and can also afford to pay for it. There are soooooooo many people out there who just never get diagnosed and end up on strong drugs like pregabalin (which is what they wanted to put me on!) for symptoms or who get diagnosed but stuck on levo/T4 only which they can't use or convert to T3. And even if they know they need T3, they can't get it because they can't afford it. (Despite it being dirt cheap in other countries.)
It's really pretty scandalous. It's a worse situation than HRT and menopause because there are real champions for that now and it's all over the media. The thyroid thing is much quieter and not as well known...
I agree. I feel lucky that I have an inkling that it’s my thyroid and am able to try unpick what’s going on. I had mistakenly assumed it was all menopause symptoms until I started with things like Raynuards which I just didn’t think could be connected.
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Yes, I've had Reynauds for about 15 years now - along with the slow metabolism and cold feet, dry skin and eyes... but I just thought all that was 'me' because my TSH and T4 were always normal and my doctor wouldn't test anything else. It was only when I crashed with these severe nighttime symptoms that I realised it was related to all this stuff going on for years.
I had an excellent consultation this morning with Dr Momi in Ireland. I can highly recommend him and he has a lot of availability. He dispenses from a UK pharmacy. He was incredibly knowledgeable without being arrogant and he wants me to double my T3 use (slowly) and also to retest my saliva cortisol.
Meanwhile I had more bloods done today so we'll see what my body has been doing with the 50mcg of T4 and if it's been converting it to rT3 or able to use it...
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Yes, I've had Reynauds for about 15 years now - along with the slow metabolism and cold feet, dry skin and eyes... but I just thought all that was 'me' because my TSH and T4 were always normal and my doctor wouldn't test anything else. It was only when I crashed with these severe nighttime symptoms that I realised it was related to all this stuff going on for years.
I had an excellent consultation this morning with Dr Momi in Ireland. I can highly recommend him and he has a lot of availability. He dispenses from a UK pharmacy. He was incredibly knowledgeable without being arrogant and he wants me to double my T3 use (slowly) and also to retest my saliva cortisol.
Meanwhile I had more bloods done today so we'll see what my body has been doing with the 50mcg of T4 and if it's been converting it to rT3 or able to use it...
Hi Joziel,
I read back through this thread. It took me a while. I saw the dreadful symptoms you listed. I’m starting with some of these myself now although not as severely. I also had dry skin, dry eyes, feeling cold, rosacea, difficult to lose weight, low mood, fatigue, low energy for years prior to menopause but didn’t really make a connection even though I have a family history of thyroid problem.
Like you my blood work always said within range and so I assumed it was all due to menopause and went off down that route instead.
My menopause symptoms I think are now controlled but my thyroid issues are ramping up. I have low appetite, get dizzy on standing, have fainted, still feel cold all the time, loss of motivation, low blood pressure, increasing cholesterol etc. It does get difficult working out what’s what though with the overlapping symptoms between menopause and hypothyroidism.
Hurrah re the T3 increase. I do hope that’s the solution for you.
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Fizz, my symptoms mirror yours also and they ramp up - crash when I overdo anything then my cortisol and adrenaline kick in, it’s a nightmare!! so traumatic.
We are lucky yes but WE search and search for answers! we go round in circles trying to get better and that in itself is exhausting!! The whole patient Thyroid treatment is beyond disgusting, to be left like this and having to pay and pay😡
I contacted Dr Momi before Dr Conway but because his reply went to my spam, I had already booked Dr Conway and paid, but I have him in mind😁 Good to have good reports Joz.
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Fizz, my symptoms mirror yours also and they ramp up - crash when I overdo anything then my cortisol and adrenaline kick in, it’s a nightmare!! so traumatic.
We are lucky yes but WE search and search for answers! we go round in circles trying to get better and that in itself is exhausting!! The whole patient Thyroid treatment is beyond disgusting, to be left like this and having to pay and pay😡
I contacted Dr Momi before Dr Conway but because his reply went to my spam, I had already booked Dr Conway and paid, but I have him in mind😁 Good to have good reports Joz.
Yes Floral, I’m familiar with that cycle of functioning then the crashing fatigue. I’ve been like that for ages but assumed it was part of my cycle. It’s getting worse now though and I just feel fatigue most of the time.
Yes, there’s so much to read, try to understand, unpick etc.
I read yesterday that the most common times for women to be diagnosed with thyroid problems are pregnancy and menopause.
I’m just on with to trying to understand more about adrenal function and the role of cortisol too.
It’s complicated and my fuzzy brain won’t always absorb the info so I have to do it in chunks.
It is a scandal that people are left in this situation.
My tests results were similar to yours if I recall with everything ‘in range’ though something I read yesterday said any TSH above 2 should be treated with suspicion and above 2.5 should be treated but obviously this isn’t how the NHS currently works. Roll on our appointments and 🤞 we get some resolution.
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I'm trying to understand cortisol as well at the moment. I did a 4 point saliva test in April last year which everyone I showed it to, said was fine/optimal. All the results were in the green normal range.
But Dr Momi said he thought the last 2 readings were higher than they should be (late afternoon and night) and he wants me to repeat this test now. So... I'm going to give it a few weeks to increase my T3 dosage first and then I'll repeat the cortisol test. It is taking me a good 1-2 hours to fall asleep at night, so cortisol could be a factor in that. I've already tried ashwaganda and holy basil before bed last year, and those did nothing even together... but I'm going to try them again now I'm increasing my T3. Also will move zinc to nighttime as that's supposed to suppress cortisol too.
I feel like I've spent 65 million pounds on supplements these last couple of years...
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I'm trying to understand cortisol as well at the moment. I did a 4 point saliva test in April last year which everyone I showed it to, said was fine/optimal. All the results were in the green normal range.
But Dr Momi said he thought the last 2 readings were higher than they should be (late afternoon and night) and he wants me to repeat this test now. So... I'm going to give it a few weeks to increase my T3 dosage first and then I'll repeat the cortisol test. It is taking me a good 1-2 hours to fall asleep at night, so cortisol could be a factor in that. I've already tried ashwaganda and holy basil before bed last year, and those did nothing even together... but I'm going to try them again now I'm increasing my T3. Also will move zinc to nighttime as that's supposed to suppress cortisol too.
I feel like I've spent 65 million pounds on supplements these last couple of years...
Yes, it’s complicated. I read it and get it into my head but retention’s another matter! Cortisol affects adrenal functioning from memory and I think prevents another hormone being synthesised into sex hormones. I think anything out of whack affects the delicate balance and then there’s menopause.
Me too with the supplements. I’m now taking b vits, d and vit k, folate, magnesium. I was reading about low stomach acid yesterday.
I’m basically working my way through a book and self diagnosing as I go. I’m going to go see my regular GP too but I don’t expect to get anywhere with my bloods being in range.
They might offer me statins for cholesterol which I absolutely don’t want and read they can be positively harmful with hypo. They’ll probably offer me anti d’s too believing I’m a hypochondriac with my list of symptoms but ‘normal’ bloods.
I sleep as soon as my head’s on the pillow. I think that’s helped by the progesterone.
I might try ashwanga or holy basil as I think my adrenal’s are struggling too. I’ve had quite a stressful time and again if my memory’s right it’s this ongoing stress that pushes cortisol up and sends things haywire. We simply aren’t designed to live under constant stress.
Yes, I’m spending a small fortune on supplements too. I’m getting a bit concerned about them all interacting now, but my vit levels are low which isn’t helping and nor is my poor appetite, it’s especially worse in the mornings and so am I. I think that’s another sign of adrenal problems.
I’m also getting cross that it’s up to us to try and join up all the dots and get the full picture. Every time I’ve been to the GP with symptoms like rosacea, Raynuards, dizziness and fainting, fatigue etc I’ve been told bloods are fine and by inference so am I!
Hence my belief it was all menopause symptoms and then the ongoing cycle of private testing then tweaking my regime to try and get to the bottom of things and find ‘balance’. Even those tests flagged hypothyroidism but the private menopause GP doesn’t really do that field.
As you say at least we’re fortunate we can do this for ourselves even though I feel it’s very wrong that the NHS doesn’t want to treat this better.
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Don't try ashwaganda or holy basil unless you know your cortisol is high :) If you have adrenal fatigue and low cortisol, you can make it much worse by taking cortisol lowering supplements :)
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Don't try ashwaganda or holy basil unless you know your cortisol is high :) If you have adrenal fatigue and low cortisol, you can make it much worse by taking cortisol lowering supplements :)
Thanks for the tip. On last tests my cortisol was high. I was recommended ashwanga and shavarti I think it was. I tried something else I think it was glucothamine that the menopause GP recommend but it didn’t make any difference. I didn’t bother with anything else at the time as I have never been one for supplements. I usually forget to take them plus I didn’t realise my normal results were so low in range until I began this journey of self learning and support. I need to re read my DUTCH test hormone reports as they flagged up hypo as well. I’ll be eligible for a flipping degree in medicine by the time I’ve finished! 🤦♀️
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I've just found this thread.
My recent private thyroid results at 8am fasted - previous dose of levo 36 hrs earlier.
TSH 2.4
Free T3 3.4
Free T4 16.8
he thinks these are okay ?
that my problem is my estradiol < 18 - testosterone is 0.64, which I know is low.
Upped my 50 patch to 100, thinks possibly low absorber
My cortisol was 686 but he says HRT can raise that .
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I've just found this thread.
My recent private thyroid results at 8am fasted - previous dose of levo 36 hrs earlier.
TSH 2.4
Free T3 3.4
Free T4 16.8
I don’t know for sure as I’m not diagnosed with thyroid problem yet but I know I have an issue.
Your thyroid levels look low to me and your TSH not optimum. If you read back over the whole thread, it’s quite long I think you might find that useful.
I think the main issue is how do you feel?
If you’re still experiencing symptoms then these need resolving. Whether that’s through HRT or thyroid meds it’s difficult to say but I’ve seen other posts that say thyroid needs to be optimal first then HRT next. Personally I’d agree with this because HRT hasn’t been the solution for me that it seems to be for others but I now know my thyroid’s out of whack.
Be aware that lots of medics seem to assume once your thyroid bloods are ‘within range’ then you’re fine. This isn’t the case at all. Most people need T3/4 to be higher in the range to feel better and vitamins to be optimal too. Thyroid UK website has a wealth of info on all of this and the Healthunlocked forum too.
he thinks these are okay ?
that my problem is my estradiol < 18 - testosterone is 0.64, which I know is low.
Upped my 50 patch to 100, thinks possibly low absorber
My cortisol was 686 but he says HRT can raise that .
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Fizz sorry just getting on forum now. Yes we appear to have these issues and what worries me is - it’s not just thyroid but the adrenal, cortisol, female hormones😫 I’m so sensitive too so I dread starting on thyroid meds whatever they may be?!!
Do you get the raised/racing heart and like body not at ease? You are def right re the times that women are more likely to get these thyroid conditions. I too am trying to get head around understanding and unpicking this stuff, iv actually given myself a break from reading as it sometimes creates more anxiety😵💫 Did you say you were having FT3 tested? How are your energy levels?
Welcome KIf68👋🏻 another recruit😁
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Fizz sorry just getting on forum now. Yes we appear to have these issues and what worries me is - it’s not just thyroid but the adrenal, cortisol, female hormones😫 I’m so sensitive too so I dread starting on thyroid meds whatever they may be?!!
Do you get the raised/racing heart and like body not at ease? You are def right re the times that women are more likely to get these thyroid conditions. I too am trying to get head around understanding and unpicking this stuff, iv actually given myself a break from reading as it sometimes creates more anxiety😵💫 Did you say you were having FT3 tested? How are your energy levels?
Welcome KIf68👋🏻 another recruit😁
Hi Floral,
It’s good to take a break. It takes up a lot of head processing space I find. I’m slower than I used to be at grasping things. No, racing heart is one thing I don’t have. I’m the opposite really a slow pulse, low ish blood pressure, a generally more sluggish system, I suppose.
I know, the interplay between everything confuses me. I need to reread the stuff about adrenals as poor adrenal functioning was mentioned with my HRT testing and high cortisol and if I remember correctly my body’s receptive to the oestrogen and can absorb it but not so good at clearing it out. I read that’s something that thyroid function affects and can lead to oestrogen dominance. I’ve definitely experienced that being wired and tearful with too much oestrogen so I currently have a day off oestrogen each week. I do wonder though, if my thyroid was functioning better, if I’d need the HRT or as much of it. I just don’t know.
I do have much higher anxiety now though and jump at loud noises etc. I think the HRT helps with calming that.
I’m keeping a list of symptoms that I definitely think are thyroid related (it’s a blooming long one 😂). I think my rosacea and Raynuards might be autoimmune issues and the dizziness on standing up and the fainting (I have never fainted before in my life) is worrysome. It’s an absolute mare that women get these things more commonly and as you say the interplay between everything and the menopause as well.
I’m having the standard new patient tests from Dr C. I was thinking about rT3 testing. Meg said it wasn’t needed at this stage but I feel I’m just wanting to get as complete a picture now as I can.
It’s frustrating that I’ve been paying for testing for my HRT and although thyroid has been flagged it’s not her area for treatment and so when I’ve gone to my GP to raise it of course all my bloods were (just) in range. This has been going on for years and I’ve been gradually getting more symptoms of thyroid and then the tweaks to my HRT and continually wondering why it wasn’t working properly. I ended up thinking it must just be due to menopause/ageing and how awful it was and that I just wasn’t holding up too well. I still feel a bit like that to be honest but at least I know there’s a probable explanation for that now.
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Hi klf68
TSH 2.4
Free T3 3.4
Free T4 16.8
he thinks these are okay ?
that my problem is my estradiol < 18 - testosterone is 0.64, which I know is low.
Your FT3 @ 3.4 looks likely too low (could you post ref ranges please?)
And if your oestradiol is <18 it's v v low & as you say indicates you're not absorbing. To give you an idea of an example therapeutic range, my Gynae likes oestradiol to be 300-800 on HRT, but what's important is how we feel & you may be better with it lower than that. But <18 is v low in postmenopausal range.
Some people also need their TSH to be lower than that on replacement & there seems to be a movement among Endos (& functional medicine practitioners) towards wanting to keep it below 2- 2.5 these days for those with confirmed thyroid disease, though it depends on how the individual feels & in my experience, on age. I've been on replacement for 30 yrs following hemithyroidectomy. I used to need my TSH to be almost suppressed to feel well in my 30s & 40s, but now in my 60s I feel better when it's around 2-3 & indeed research seems to show that a higher TSH as we age is associated with greater longevity.
Yes I think your testosterone looks quite low according to the range at the lab I use (sorry don't have details to hand this morning) but whether that's adequate for you is hard to say without knowing your symptoms. Are you on testosterone?
If you don't mind telling us how long you've been on thyroid replacement & HRT, what HRT products you've tried, your age, whether pre or postmenopause (I'm assuming post from your v low E2), whether you've had thyroid surgery, is it Hashimoto's etc & what your current symptoms are, whether you feel undertreated for thyroid etc, that would help us get a better picture. Sorry so many qs & apologies if you've posted that info elsewhere before & I've missed it! Please just give as much info as you feel relevant that's comfortable for you.
I haven't looked at this thread for some time & before I knew you'd posted on here I bumped another long running thyroid thread for you to see yesterday (mentioned it in Postmeno3's adrenals thread) - in case you'd find it helpful to see the issues we've covered on there over time. It was intended to be the place we all went for thyroid discussion but it's also fine of course to raise other thyroid related threads like this one. The earlier one I had in mind is called Thyroid Issues & Support.
Wx
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Thanks Wrensong,
I’m going to hop across as my adrenals aren’t functioning great either.
I’m a newbie but tried to reply to the other post but just noticed I somehow embedded my reply in the middle of the text! 🙈
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Sorry for delay in replying .
TSH 2.4, range 0.27-4.20
Free T4 16.80, range 12-22
Free T3 3.4, range 3.1-6.8
Age 55
Diagnosed Hypo 23 years ago before I became preganant with 2nd child
I had vitilogo since my early 20s ( and dry eyes) but hadn't linked them to autoimmune
Familial history ( nan, mum and 1 of 2 sisters all hypo)
Levo 125mcg for 20 + years
HRT since late 2019.
No period since mirena removal 3 years ago
Current regime is Everol 100 ( was 50) and utrogestan 100 daily. I've been reducing my estradiol as have been worried about risks of longer term use.
Have used testosterone ( prescribed privatkey, then NHS ) . My level went from 0.9 to 1.8 after 6 months. I developed an allergic skin rash, so decided to stop using it.
Oct 23 GP annual TSH test ( non fasted) showed TSH 0.5, hence I referred myself privately to endo.
Symptoms always tired, low mood, achey joints, brain fog. My sleep is fine whilst on oestrogen. Non drinker & non smoker.
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klf68, thanks so much for coming back with that info :). I'm not on the forum much at the mo but will try to come back to you later.
Wx
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Hi again klf68, if you have a lot of hypothyroidism in your family & you've been on TH for 20 years I imagine you already know a great deal about the condition, but if there is anything it might help to discuss with others in a similar situation please do ask away. We have quite a few members on thyroid meds & everyone's experience is different, so there's always the potential for a snippet exchanged to help us make progress.
You said in your earlier post that your estradiol was <18 so I'm a bit confused by what you said in your latest post . . .
Current regime is Everol 100 ( was 50) and utrogestan 100 daily. I've been reducing my estradiol as have been worried about risks of longer term use.
You were on 50mcg but you're now on 100mcg, so increasing not reducing, is that right? Can I ask what dose you were on at the time of the very low E2, <18, result? That's certainly an extremely low level for someone on oestrogen replacement, suggesting you are not absorbing from your patch.
I'm surprised that the ref range for T3 at your lab goes down as far as 3.1; the one I use goes from 3.9-6.8, so prior to your posting the range I had thought your T3 was below range, though it is still really quite low @ 3.4 & suggests you are not converting your Thyroxine that well. As your T4 is also below mid-range & some people on replacement don't feel well unless their TSH is quite a bit lower than that, given your tiredness, low mood, brain fog & possibly the joint pain, I wonder whether you might feel better on a little more Thyroxine? But you will have a better idea than me after all this time of what suits you best. And you'll know that all those symptoms, confusingly, are common at menopause whether we have a thyroid condition or not. Hence the difficulty for hypothyroid women & their doctors in working out what's what! Can I ask is your T3 usually that low & have you ever taken Liothyronine or NDT?
Oct 23 GP annual TSH test ( non fasted) showed TSH 0.5, hence I referred myself privately to endo.
OK so you self-referred to a private Endo in Oct 23 because your TSH was 0.5, yet you are on the same dose of Thyroxine (125mcg) you've always been on? So the 0.5 TSH then & the latest 2.4 were on the same dose of T4? Did you have the same symptoms with that lower TSH as you have now? Was your HRT regimen different for the 2 tests? Did anything helpful, come out of that consultation & are you seeing him/her again?
Sorry, more questions! Would help to know your own instincts about what's going on to make you feel unwell too. But first impression for me is that the v low oestradiol & what looks to be a suboptimal TFT are probably not helping matters.
Wx
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Hi Wrensong, I really appreciate your reply. Sorry if I haven't explained fully.
I'm increasing my oestrogen patch on recommendation of private endo. i was 37.5 patch when my estradiol was < 18.
A private meno specialist told me 2 years ago that I am a poor absorber, she wanted to put me up over 100 but I declined, as it's unlicensed and the NHS won't prescribe above 100 ( NHS memo lady told me the same). It's so expensive to have HRT privately.
Thyroid- yes, I read a lot about thyroid, especially in the past 12 months and after menopause. As you say, it's quiet difficult as the symptomms of hypo and memo are the same.
I am on Health Unlocked forum.
October 2023 - my TSH 0.1 ( NOT 0.5)[/b] NHS annual blood test , T4 18.4, taken 12 hours after last dose of levo.
Advice is that you "fast" to get a true TSH read , so i did for my private tests @ 8am, TSH was 2.4 DEc 23, taken 36 hours after my last levo.
Same dose of 125mcg levo, same symptoms, tests approx 6 weeks apart. I think the optimum is that your T4 is 3 x higher than your T3? Mine isn't.
I've never had my T3 tested before or taken anything other than levo. The endo didn't est for Thyroid antiboides ( Hashimotos) either.
Endo is saying NOT thyroid, he thinks that's fine , it's my ostrogen that's the problem. I have more bloods early April to check meno levels and then follow up consultation.
I'm leaning towards emailing him to ask why he didn't test my antibodies and why my results aren't "optimal". I agree re how i feel but I'm not sure if it's meno or thyroid as neither results are optimal.
The reference ranges are nonsense. They sample 120 people locally! And they have pushed back on having a reference TSH 2.5 as it would cause too much work as too many people would be over that, so would be classed as hypo. Madness.
I'm not sure that I want to stay on HRT forever, I'm not convinced that Utrogestan doesn't alter my mood. I had the same with the Mirena, once that came out, my mood lifted within a few days.
I sound like a real hypochondriac but you know when you feel less than great, even though you try to live a healthy lifestyle ,it gets you down a bit 😢.
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klf68, thank you for the further detail. I very much doubt you're a hypochondriac. The combination of menopause with a thyroid condition can make this time of our lives especially difficult & though there are some great clinicians out there willing to listen & work with us, there has historically been a tendency to medical gaslighting with hypothyroidism, in common with other conditions that predominantly affect women, meaning over time our confidence in our own instincts & judgement can get trashed, leaving us feeling dismissed, hopeless & ashamed to keep telling it like it is, as if the very real symptoms we have are somehow imaginary or due to our own failure. You will be heard here though.
Looking at your latest post in order of the points you raise . . .
Given your v poor absorption, have you tried methods other than patches for your oestrogen, or even just changed to a different patch brand if you prefer to persevere with patches? I used to get around 240 from a 37.5mcg Estradot patch (long postmenopause & no ovaries) to give you an idea of what's possible for women who absorb well in contrast to your <18 from that dose which I'm assuming was also Estradot, unless you were cutting down another brand? Have you tried Estrogel or Sandrena? Personally I don't get on well with once/twice a day methods but many women on here love the gels. Lenzetto has a reputation for giving lower levels so I'd avoid that in your case, at least for now. Agreed, private treatment can be very expensive & sadly, given long NHS lists & frustratingly patchy expertise in menopause care, beyond the means of many women.
Before I logged on & read your latest post I'd been wondering whether going as long as 36hrs between your thyroid meds & the latest test had skewed the picture a bit. Given the difference in that TFT & the one when you'd had your meds only 12 hrs before & your TSH was considerably lower with correspondingly higher T4, it does now look as though time between last dose & testing could have had some bearing each time. But other variables can affect our results too & if one test was fasting & the other not, as you know that may have made a difference. You'll know too, that Thyroxine has a long half life, but I wouldn't be surprised if at the Dec test your body was registering you'd gone too long without that day's dose, giving a possibly misleading picture, making you look a bit under-treated. I don't fast for my TFTs btw - it's impractical for me given the long drive involved & test timing, but I take my meds around 2hrs before breakfast, avoid any supplements that might interact & time tests to be ~24 hrs after last dose (28 in practice) & that's what my Endo prefers.
Can I ask do you feel you'd like to try some form of T3 & does your Endo support its use? Be good to know how your T3 levels & symptoms have been over time before going down that potentially stressful & complicated route, as the low T3 on this latest possibly skewed test might be a blip. If you have the T3 result for the Oct test (or any previous ones) that might give us a better idea of whether there's a conversion defect contributing to the way you feel. Also, have you only had the symptoms you describe since menopause or never felt well on Thyroxine?
I'm not aware of this advice:-I think the optimum is that your T4 is 3 x higher than your T3? Mine isn't.
but your symptoms, below mid-range T4 & low T3 on the Dec test made it look as though there might be leeway for upping your Thyroxine a little, but we don't know how reliable that test was & I can see your Endo wouldn't want to muddy the picture with too many variables if he's focusing on getting your oestrogen up to see how you feel on that. My feeling is that our response to HRT is unlikely to be optimal though, if thyroid status isn't right, but you'd need to discuss with your Endo any changes you feel might be sensible & you may well feel better by addressing the oestrogen issue. So if you can stick with that one change for now you can maybe look at your thyroid with him next time, assuming your symptoms are bearable in the meantime?
They don't usually seem interested in antibody levels once we're established on thyroid replacement, I think NHS advice is not to retest levels after initial diagnosis & since I've been treated privately I can't remember my Endocrinologist ever requesting they be tested. They were high on diagnosis 30 yrs ago but I think only tested once since then, a decade or so ago in tests ordered by a non-endocrine clinician & they were negligible at that stage.
I agree ref ranges are not the be all & end all & it can be disastrous for some patients if their doctor won't take into account their symptoms & instincts as well as blood results. I'm not sure about the controversy over revision of the cut off for the TSH range. 6.5-ish (from memory) used to be top of TSH ref range when I was first started on TH replacement & if we were below that we were deemed to be fine. Many of us, me included, were nowhere near fine with a TSH that high, so thankfully top of range has come down a bit since then. But as I said earlier, I don't feel good in my 60s with my TSH as low as I needed it to be at 30 or 40 & I think it's not as simplistic as saying everyone should aim for a TSH for example around 1. I think what's needed most is recognition that hypothyroidism is a complex condition with far reaching effects on our bodies, that for some of us Thyroxine alone doesn't compensate adequately for a healthy thyroid & that patients need to be listened to & treated as partners in their care, with ref ranges just a tool to aid in treatment.
You could well be right about Utrogestan lowering your mood, especially if you felt similarly on Mirena. Many of us on here have problems with Utro in various ways. I'm progesterone intolerant & Utro was the worst of the lot for me, making me very unwell indeed. There was a study that found that progesterone also potentiates thyroid hormone, so that's something to be aware of for anyone on HRT with a thyroid condition. Oestrogen can have the opposite effect as you'll know, but it's said the interaction is less likely on transdermal oestrogen than with oral. That said, a few of us on here have had to tweak our thyroid dose in response to starting/changing even transdermal HRT, but I have the impression it's mostly those of us on T3 who seem to have more problems balancing the two types of replacement.
Sorry this is rambling - I copied your last post out & wrote the reply in a WP app without your previous posts visible at the time, but scanned them when I logged back on & hope what I've written reflects your situation well enough!
Wx
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Hi ladies - so sorry I haven’t been around for a while, feel as though I’ve missed so much discussion here! I didn’t want you to think I’ve slid off the radar from lack of interest, it’s just that I’ve hit barriers regarding NDT titration - I get a whole raft of unsettling symptoms each time I increase my dose yet remain hypothyroid. My thyroid doc is off poorly so unfortunately can’t discuss my latest test results with her or options for treatment. So I reached out to a thyroid consultant (not a doctor but well respected writer/researcher/coach) for ideas. He also feels that I don’t convert T4 to T3 well and that even NDT (because of it’s T4 to T3 ratio) might be an issue. He suggested I add T3 to the NDT and I got a trial prescription from my meno consultant to try under his coaching. I’m also thinking of getting my reverse T3 tested…
I can see by previous bloodwork that I don’t convert that well and my bloods haven’t improved since Sept since moving from 125 Levo to 2.5 grains NDT. But - my recent bloods also show very elevated oestrogen from just less than a 75 patch - the level was over 3000! Also elevated free testosterone although I’m only taking 2/3 mg daily. I’ve been a week off the latter and reduced my patch to about .56. I take 125mg cyclogest nightly.
My question is: does anyone know whether the elevated sex hormone levels can be linked to a sluggish thyroid? They've never been this elevated especially at those doses. Also, do you think that the elevated oestrogen might interfere with the thyroid? I read that it was just oral oestrogen that interferes, not transdermal - but seeing those blood levels concerned me. Is it worth doing a reverse T3?
Thanks all. I will catch up on posts when I can x
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Hi Furry,
I think oestrogen does have an impact. I believe from my reading the more oestrogen you have the more thyroid hormones you need in your system to clear it. I think I’m having this problem I’m getting oestrogen heavy as not enough thyroid hormones to clear it from my system. I’ve been spotting so that’s a whole another worry. I’ve stopped oestrogen at the moment until I work out what to do. I’m on progesterone. I think Rachel Hill thyroid advocate is on your regimen of T3 and NDT. I was reading something about this today. I’m feeling rather fed up currently so can relate and am sure I have thyroid eye disease. I have so many issues from dryness, to puffiness, redness, sudden pain and they just look weird but currently according to NHS blood tests results I’m fine. 🤦♀️
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This is interesting.
https://www.imaware.health/blog/hypothyroidism-and-menopause#:~:text=Estrogen%20regulates%20the%20protein%20that,menopause%20can%20magnify%20one%20another.
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Furyan, that is going to be a false estrogen reading. Was it a venous draw? And you don't use gel so there's no way the site could have been contaminated?
I think it's very unlikely that 3000 is going to be your correct estrogen result. I suggest you to another test on day 3 of your cycle (during your period, assuming you're still peri) to get a sense of what your 'lowest' reading is and what the HRT is giving you. (Your own body might be contributing at other times of the month more.)
Too high estrogen is definitely not a factor for me. I've never had a reading over 400 and that was only once. Most of the time it was 150-198 until I went up to 6 pumps of gel, and now it's about 343pmol.
I am very confused about what is going on with me and whether I do indeed have anything wrong with my thyroid now.
I got results back from my last bloods on 50mcg T4 and 15mcg T3 (5mcg 3x/day) and my T4 was pretty low, only just in range - but my T3 had gone up quite a lot, to 5.1 (top of range 6.8 ) having been at 4.3 on my last bloods. And the only change I made between those bloods was to add the 50mcg of T4. Which suggests that my body is able to make use of T4 and convert it.
In which case, why was my original pre-thyroid meds blood test showing high/optimal T4 but low T3 and high rT3? That doesn't make any sense. If I can convert levo, I should be able to convert my own T4. I'm so tired of trying to figure out what's going on and why I have these awful night time symptoms. I'm waiting for my rt3 result this week to confirm that I'm not converting T4 to rt3 - but if that is low, then I should probably increase my T4 to 75mcg and see if that helps rather than adjust T3 at this time. (As I'm now on 10, 10, 5 of T3, I might need to come down on the T3 if I increase T4.)
But I am still not understanding why I can convert levo to T3 but not my own T4. And then I start to wonder if we weren't originally right in the first place, that I just needed to clear the high rT3 to reset things but don't need ongoing thyroid meds. Anyway, it's all v confusing.
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Furyan, that is going to be a false estrogen reading. Was it a venous draw? And you don't use gel so there's no way the site could have been contaminated?
I think it's very unlikely that 3000 is going to be your correct estrogen result. I suggest you to another test on day 3 of your cycle (during your period, assuming you're still peri) to get a sense of what your 'lowest' reading is and what the HRT is giving you. (Your own body might be contributing at other times of the month more.)
Too high estrogen is definitely not a factor for me. I've never had a reading over 400 and that was only once. Most of the time it was 150-198 until I went up to 6 pumps of gel, and now it's about 343pmol.
I am very confused about what is going on with me and whether I do indeed have anything wrong with my thyroid now.
I got results back from my last bloods on 50mcg T4 and 15mcg T3 (5mcg 3x/day) and my T4 was pretty low, only just in range - but my T3 had gone up quite a lot, to 5.1 (top of range 6.8 ) having been at 4.3 on my last bloods. And the only change I made between those bloods was to add the 50mcg of T4. Which suggests that my body is able to make use of T4 and convert it.
In which case, why was my original pre-thyroid meds blood test showing high/optimal T4 but low T3 and high rT3? That doesn't make any sense. If I can convert levo, I should be able to convert my own T4. I'm so tired of trying to figure out what's going on and why I have these awful night time symptoms. I'm waiting for my rt3 result this week to confirm that I'm not converting T4 to rt3 - but if that is low, then I should probably increase my T4 to 75mcg and see if that helps rather than adjust T3 at this time. (As I'm now on 10, 10, 5 of T3, I might need to come down on the T3 if I increase T4.)
But I am still not understanding why I can convert levo to T3 but not my own T4. And then I start to wonder if we weren't originally right in the first place, that I just needed to clear the high rT3 to reset things but don't need ongoing thyroid meds. Anyway, it's all v confusing.
Joziel - lovely to see you! Yes, I was shocked about the oestradiol reading being slightly short of. 75 patch. As said, I’ve now reduced by cutting it to a .56 equivalent and been off testosterone for a week. It was a finger prick test but I persuaded my GP to do test this week via venous to see what the levels are now. I’m 3 years post meno now so no periods.
Your T3 looks good! It’s ok for your T4 to be low to mid too so it seems as though you are converting. I’m very interested that your results appear to have done a complete turnaround? How does this translate to how you feel energy wise and all things hypo though?
Really sorry about your nighttime symptoms. What are they? x
I’m a little nervous about adding T3 to my NDT without a full consultation so I’m very keen to see the thyroid doctor (or the consultant) as soon as possible. Hoping that by then the rT3 result will be back. For now, the consultant suggested a way to get started on it but I’m taking it very slowly. What is clear is that I have to be prepared to raise my T3, which is only 3.7, hence why I started to add it.
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Hi Furry,
I think oestrogen does have an impact. I believe from my reading the more oestrogen you have the more thyroid hormones you need in your system to clear it. I think I’m having this problem I’m getting oestrogen heavy as not enough thyroid hormones to clear it from my system. I’ve been spotting so that’s a whole another worry. I’ve stopped oestrogen at the moment until I work out what to do. I’m on progesterone. I think Rachel Hill thyroid advocate is on your regimen of T3 and NDT. I was reading something about this today. I’m feeling rather fed up currently so can relate and am sure I have thyroid eye disease. I have so many issues from dryness, to puffiness, redness, sudden pain and they just look weird but currently according to NHS blood tests results I’m fine. 🤦♀️
Hi Fizwhizz, I thought there is a link between thyroid and oestrogen too. I feel rather in the dark about adding the T3 because, ideally, this should be done following consultation. It’s unfortunate and frustrating that the thyroid doc isn’t available at the moment and my consultation has been put back as a result. I started to spot too, but I think it’s because I reduced my patch when I saw those elevated results. I’ll be interested to see what the levels are now as it’s been over a week that I reduced it.
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Hi Furry,
I think oestrogen does have an impact. I believe from my reading the more oestrogen you have the more thyroid hormones you need in your system to clear it. I think I’m having this problem I’m getting oestrogen heavy as not enough thyroid hormones to clear it from my system. I’ve been spotting so that’s a whole another worry. I’ve stopped oestrogen at the moment until I work out what to do. I’m on progesterone. I think Rachel Hill thyroid advocate is on your regimen of T3 and NDT. I was reading something about this today. I’m feeling rather fed up currently so can relate and am sure I have thyroid eye disease. I have so many issues from dryness, to puffiness, redness, sudden pain and they just look weird but currently according to NHS blood tests results I’m fine. 🤦♀️
Hi Fizwhizz, I thought there is a link between thyroid and oestrogen too. I feel rather in the dark about adding the T3 because, ideally, this should be done following consultation. It’s unfortunate and frustrating that the thyroid doc isn’t available at the moment and my consultation has been put back as a result. I started to spot too, but I think it’s because I reduced my patch when I saw those elevated results. I’ll be interested to see what the levels are now as it’s been over a week that I reduced it.
The link I posted second to an article helps explain some of it I thought. It gets very complicated though and as soon as you do something with one hormone it has a knock on effect it seems. I panicked about the spotting and have stopped the oestrogen immediately. Waiting to hear from the private menopause GP re that. She upped my dose before Xmas as symptoms and tests showed oestrogen was low but I think as my body’s not clearing it effectively it’s now ramping up. I’m sooo fed up of all the faffing around and not feeling great. My eyes are bothering me too. I have dry eyes, puffiness etc and think it’s thyroid related but not Graves. I dunno what’s going on! 🤷♀️
Solidarity ladies! x
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It's all a bit confusing really, what's going on with me. I'm definitely not symptom-free but I am a LOT better (overall) than I was last summer, before starting thyroid meds. I did also notice a huge improvement in symptoms when I first began T3 and when I first began T4. I didn't retain that improvement totally, but the fact that what I did affected the symptoms I had, was enough of an indication for me to think that thyroid is somehow behind this.... (I've tried so much else - B12 shots, iron infusion etc - and nothing else has 'influenced' the symptoms at all. So I feel like I'm mucking around with the right things when it begins to do something, even if it's not very clear yet what is going on.)
My symptoms, by the way are:
Inner tremors, worse at night - can just be a buzzing or fizzing in my feet when minimal, when at max my whole body feels like it's shaking the bed
Heart beating hard (can see aortic pulse in my chest, hear it in my ear) and faster than usual (resting pulse can be 95bpm, taken just after being woken from sleep)
Hypnic jerks as I start to fall asleep (either my body jerks or my mind startles and I feel totally awake suddenly) - until I just stop being able to fall asleep
Insomnia from all the above, resulting in sometimes 3 hours light sleep...
So they are really neurological symptoms which happen mainly at night...
I am thinking it's not just about estrogen or just about thyroid, but about some kind of interaction between them and both need to be optimal. I'm currently on 6 pumps of gel but that only gives me 334pmol so I might be changing to Sandrena in the next couple of months. (I've got my Newson follow up at the start of March.) I'd like to try getting estrogen to 400-600pmol and seeing what that does to symptoms.
And with thyroid, I never really had energy problems or fatigue. Even when I couldn't sleep I was so wired-but-tired during the day, I was just pumped with adrenaline. My metabolism is definitely faster and I can eat more than the ridiculously small amount I could eat before.
My T3 is actually slightly low, because if you're on only T3 or mainly T3 then you need it right at the very top of the range if not slightly over - and mine isn't there yet. But if my rT3 shows that I can convert T4 when I finally get the result this week, then I will try to increase T4 instead of T3. I also will have zero understanding of why my body can do that but couldn't convert my own T4...
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klf68, thank you for the further detail. I very much doubt you're a hypochondriac. The combination of menopause with a thyroid condition can make this time of our lives especially difficult & though there are some great clinicians out there willing to listen & work with us, there has historically been a tendency to medical gaslighting with hypothyroidism, in common with other conditions that predominantly affect women, meaning over time our confidence in our own instincts & judgement can get trashed, leaving us feeling dismissed, hopeless & ashamed to keep telling it like it is, as if the very real symptoms we have are somehow imaginary or due to our own failure. You will be heard here though.
Looking at your latest post in order of the points you raise . . .
Given your v poor absorption, have you tried methods other than patches for your oestrogen, or even just changed to a different patch brand if you prefer to persevere with patches? I used to get around 240 from a 37.5mcg Estradot patch (long postmenopause & no ovaries) to give you an idea of what's possible for women who absorb well in contrast to your <18 from that dose which I'm assuming was also Estradot, unless you were cutting down another brand? Have you tried Estrogel or Sandrena? Personally I don't get on well with once/twice a day methods but many women on here love the gels. Lenzetto has a reputation for giving lower levels so I'd avoid that in your case, at least for now. Agreed, private treatment can be very expensive & sadly, given long NHS lists & frustratingly patchy expertise in menopause care, beyond the means of many women.
Before I logged on & read your latest post I'd been wondering whether going as long as 36hrs between your thyroid meds & the latest test had skewed the picture a bit. Given the difference in that TFT & the one when you'd had your meds only 12 hrs before & your TSH was considerably lower with correspondingly higher T4, it does now look as though time between last dose & testing could have had some bearing each time. But other variables can affect our results too & if one test was fasting & the other not, as you know that may have made a difference. You'll know too, that Thyroxine has a long half life, but I wouldn't be surprised if at the Dec test your body was registering you'd gone too long without that day's dose, giving a possibly misleading picture, making you look a bit under-treated. I don't fast for my TFTs btw - it's impractical for me given the long drive involved & test timing, but I take my meds around 2hrs before breakfast, avoid any supplements that might interact & time tests to be ~24 hrs after last dose (28 in practice) & that's what my Endo prefers.
Can I ask do you feel you'd like to try some form of T3 & does your Endo support its use? Be good to know how your T3 levels & symptoms have been over time before going down that potentially stressful & complicated route, as the low T3 on this latest possibly skewed test might be a blip. If you have the T3 result for the Oct test (or any previous ones) that might give us a better idea of whether there's a conversion defect contributing to the way you feel. Also, have you only had the symptoms you describe since menopause or never felt well on Thyroxine?
I'm not aware of this advice:-I think the optimum is that your T4 is 3 x higher than your T3? Mine isn't.
but your symptoms, below mid-range T4 & low T3 on the Dec test made it look as though there might be leeway for upping your Thyroxine a little, but we don't know how reliable that test was & I can see your Endo wouldn't want to muddy the picture with too many variables if he's focusing on getting your oestrogen up to see how you feel on that. My feeling is that our response to HRT is unlikely to be optimal though, if thyroid status isn't right, but you'd need to discuss with your Endo any changes you feel might be sensible & you may well feel better by addressing the oestrogen issue. So if you can stick with that one change for now you can maybe look at your thyroid with him next time, assuming your symptoms are bearable in the meantime?
They don't usually seem interested in antibody levels once we're established on thyroid replacement, I think NHS advice is not to retest levels after initial diagnosis & since I've been treated privately I can't remember my Endocrinologist ever requesting they be tested. They were high on diagnosis 30 yrs ago but I think only tested once since then, a decade or so ago in tests ordered by a non-endocrine clinician & they were negligible at that stage.
I agree ref ranges are not the be all & end all & it can be disastrous for some patients if their doctor won't take into account their symptoms & instincts as well as blood results. I'm not sure about the controversy over revision of the cut off for the TSH range. 6.5-ish (from memory) used to be top of TSH ref range when I was first started on TH replacement & if we were below that we were deemed to be fine. Many of us, me included, were nowhere near fine with a TSH that high, so thankfully top of range has come down a bit since then. But as I said earlier, I don't feel good in my 60s with my TSH as low as I needed it to be at 30 or 40 & I think it's not as simplistic as saying everyone should aim for a TSH for example around 1. I think what's needed most is recognition that hypothyroidism is a complex condition with far reaching effects on our bodies, that for some of us Thyroxine alone doesn't compensate adequately for a healthy thyroid & that patients need to be listened to & treated as partners in their care, with ref ranges just a tool to aid in treatment.
You could well be right about Utrogestan lowering your mood, especially if you felt similarly on Mirena. Many of us on here have problems with Utro in various ways. I'm progesterone intolerant & Utro was the worst of the lot for me, making me very unwell indeed. There was a study that found that progesterone also potentiates thyroid hormone, so that's something to be aware of for anyone on HRT with a thyroid condition. Oestrogen can have the opposite effect as you'll know, but it's said the interaction is less likely on transdermal oestrogen than with oral. That said, a few of us on here have had to tweak our thyroid dose in response to starting/changing even transdermal HRT, but I have the impression it's mostly those of us on T3 who seem to have more problems balancing the two types of replacement.
Sorry this is rambling - I copied your last post out & wrote the reply in a WP app without your previous posts visible at the time, but scanned them when I logged back on & hope what I've written reflects your situation well enough!
Wx
So sorry haven’t replied, am away and too much to reply on phone, will do it when home !
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klf68
So sorry haven’t replied, am away and too much to reply on phone, will do it when home
Yes, sorry, it was an epic wasn't it? :o ;D. Please don't worry about replying, you can take anything from it that might be helpful & report back when the time's right for you. Or not, if there's nothing useful in it! I tend to write a lot on thyroid posts, as there can be so many factors involved & I've had to think outside the box over the years trying to get my own issues sorted. I'm not on the forum much at the mo, so your not having responded relieved the guilt of my not having been around! You can always send me a PM if I'm not about, but there's a lot of combined experience on here from a good number of members on thyroid meds so someone is usually around to compare notes.
Wx