Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Wrensong on November 30, 2022, 02:34:41 PM
-
As thyroid concerns quite often arise on MM, threads on other topics sometimes get derailed when a thyroid matter comes up that needs in depth discussion &/or repeated posts to deal with. For those who are understandably only interested in the original topic I imagine it can get frustrating when their thread gets cluttered with often lengthy posts that don't address the issue they raised. Perhaps also guilt-inducing/inhibiting for those whose thyroid concerns have come to the fore & taken the thread off piste! Sometimes this means the thyroid related discussion is continued via PM, but what's then discussed privately & potentially of interest to other members who could have valuable contributions to make, doesn't get aired.
So I wondered whether a dedicated thyroid thread might be helpful? We do have many threads with thyroid in the title, I know, including a fairly recent one on interpreting thyroid test results, but the focus of that is narrower than I have in mind here. Is there support for a general thyroid thread here, on which members can post all manner of thyroid concerns? My thinking is PM will still be invaluable for anyone who understandably doesn't want to post their medical history, tests results etc publicly.
-
Hi Wrensong
I think that’s a great idea!
By thread, do you mean it’s own category like Post Menopause etc?
M x
-
Hi Marchlove, I was just thinking a potentially long-running thread, like the anxiety support thread or the poo thread, both of which members seemed to find helpful to go back to again & again. Would that work do you think? But open to whatever everyone thinks would work best, assuming that's OK with Admin.
Wx
-
Probably a long running thread as you’ve suggested would be best.
Then everything will be in one place.
x
-
YES PLEASE!
I don't know which format would work the best because I'm only new here, but meno + thyroid issues are so interconnected that a specific thread for this would be great. Thanks so much.
-
Great idea, I'm sure many people will find it useful, I'm sure I will. I have Hashimoto's though not at a level that needs treating yet. If you think posting personal info on a public forum will put people off you could consider posting it in Private Lives.
-
I just thought if something thyroid comes up on an unrelated thread that needs addressing, rather than carry on taking that thread off topic it would give us somewhere to suggest we continue. Also I think sometimes it can be a bit daunting for newbies to start their own thread & it's not obvious how to do it, so again a thread like this would give them somewhere to post thyroid related stuff where it's more likely to get answered by other thyroid members. Good point about the Private Lives section.
-
Hi everyone, I'm a newbie here and was recommended to ask my question here as well as in the Newbie thread. There's a lot of background info here, my main question is at the bottom if you don't want or have time to read it all.
Quick Background - diagnosed hypothyroid (NOS) in Feb 2003 after the birth of my daughter and having been investigated for subclinical for a few years prior to that). All good on levothyroxine (T4) until Jan 2012 when I had an accident and was consequently diagnosed with fibromyalgia. Ended up bed and wheelchair bound for about 5 years during which I did a lot of research (when my brain allowed) and discovered that my fT3 levels were consistently lower than normal range and suspected poor T4>T3 converter so was given a trial of liothyronine (T3) on top of my T4 and it took a while to find the right levels but it changed my life completely. I was functional again and even managed to start strength training at the gym 3 times a week (which further helped with my pain levels).
In August 2020 (height of lockdowns) my GP (who has been very supportive) prescribed Evorel Sequi for my suspected menopausal symptoms - irregular periods, night sweats, unrefreshing sleep, mood swings, fatigue and brain fog. I seemed to getting on ok with it, most of my symptoms lessened/resolved although I have had non pitting oedema in my hands/ankles along with a puffy face from time to time. By June of this year, my hypothyroid symptoms had returned (having very gradually got worse for at least 18 months looking back now) - fatigue, increased pain, puffy face, brain fog, hair loss and loss of the outer third of my eyebrows. Problem being the cross over in my hypothyroid and menopausal symptoms so hard to tell what is causing which symptoms at times. My thyroid tests showed I was undermedicated - TSH 4.76 (0.27-4.20), FT4 9.1 (10-22), FT3 2.9 (3.1-6.8) despite being told that the transdermal HRT shouldn't affect my thyroid function. I increased my T4 and my latest results are now looking better although still not optimal with my T4 20% through the range and T3 54% through the range. I tend to feel best when my T3 is in the top third and T4 about 50% through the range. I'm making minor tweaks in my T4 doses to try to get there but I understand that things may have changed with regards to where I feel best now that my sex hormones are changing.
However, now that my thyroid levels are much better, I seem to be having major issues with the HRT. I had bloods done privately in August through Medichecks and discovered that my oestradiol was very high. I know that blood tests for oestradiol are not very useful as the levels can fluctuate wildly during perimenopause, but it did make me wonder if my initial symptoms were due to my thyroid levels being off so I decide to remove the patch to see how I felt without it.
Blood test 24th Aug
FSH 8.4IU/L
LH 17.5IU/L
Oestradiol 1,139pmol/L
I was ok for about 3/4 weeks and then the initial symptoms started again. Restarted the patches and started to feel better again within a couple of weeks but started to get mild oedema in my ankles/legs again. At my annual review in October, my GP changed me from the cyclical patches to continuous combination patches (Evorel 50 Conti) and that's when things started to go really awry. Symptoms as follows:
Constipation
Difficulty passing urine at times along with bladder and vulval pain (using tampons can be torturous)
Fatigue
Non-pitting oedema ankles/legs
Puffy face
5kg weight gain
Increased allergy symptoms
Lack of appetite
Nausea
Non existent libido
Low mood
Anxiety
Lack of concentration/memory
Increased generalised pain
Non restorative sleep
Return of occasional Benign Paroxysmal Positional Vertigo
When I was getting my thyroid levels checked I thought it might be a good idea to have my my sex hormones rechecked while I was at it. There are 2 sets of results (2nd and 10th November) because of an issue getting some of the results, at which point I was in the luteal phase of my cycle (period started on 13th Nov). Both tests show high prolactin. 1st test shows high LH and FSH. 2nd test shows high oestradiol and testosterone. I'm led to believe that oestradiol meds and being hypothyroid can cause high prolactin - I don't think it's high enough to be pituitary tumour but need to talk to the GP about it next week.
Blood test Nov 2nd
Albumin 36g/L (35 - 50)
SHBG 111nmol/L (27.1 - 128)
FSH 19.2IU/L (1.7-7.7)
LH 29.9IU/L (1.0-11.4)
Oestradiol 1,051pmol/L (82 - 1251)
Testosterone 0.97nmol/L (0.29 - 1.67)
FAI 0.9% (0.2 - 7.1)
Prolactin 1,370mIU/L (102 - 496)
Results 10/11/22
Albumin 38g/L (35 - 50)
SHBG 114nmol/L (27.1 - 128)
FSH ***
LH ***
Oestradiol 1,660pmol/L (82 - 1251)
Testosterone 2.23nmol/L (0.29 - 1.67)
FAI 2% (0.2 - 7.1)
Prolactin 858mIU/L (102 - 496)
The symptoms have got so bad I've had to stop using the patches (now day 6 and symptoms have improved a bit but still there to varying degrees). I know chopping and changing so much won't be helping but I just want to try get some sort of hormonal balance. I believe that it's the progestin in the patches that I'm reacting badly to as the symptoms were less severe, coming and going when I was using it cyclically. I think I'd like to try body identical progesterone as well as oestradiol. Not sure of I'd be better using it cyclically or continuously. I've had a look and it would seem that my options are Utrogestan oral tablets (the vaginal capsules seem to be for fertility issues??) and Bijuve combination oral tablet but I have just done an IgG food intolerance test that shows I have issues with peanuts and soy (along with cows milk, whey and egg!) and am considering cutting them out my diet for a few months to see if my symptoms improve but there is a warning on the Utrogestan capsules saying they contain soya lecithin. Soy products can also cause issues for hypothyroidism. I was wondering if I was also perhaps showing signs of oestrogen dominance and the Bijuve contains 1mg oestradiol (double that of the Evorel 50) along with 100mg progesterone. I feel as if I'm stuck between a rock and a hard place. Having taken so long to get my hormones balanced enough to feel well, perimenopause has thrown everything into turmoil again.
Has anyone here with hypothyroidism and/or food sensitivities had success with the utrogestan capsules? And other body identical oestradiol products?
-
Hello fabjellybean :welcomemm: It's good to have you with us but I'm sorry you've been having a difficult time of it. Thank you for supplying the detail as it helps us to get a better idea of what might be going on. That said, there is a lot to get to grips with :o, so first I'll try to answer your bottom line question about Utrogestan & body identical oestrogen as that's more straightforward. I'm also hypothyroid - nearly 30 years on replacement, currently T4 & T3, because of a conversion defect. Also on HRT for a few years, but postmenopause & still working on balancing the two.
I really struggle with progesterone in all its forms, but for me Utrogestan is the worst, I sense because it's too strong for me. That doesn't mean it won't suit you & many women on here get on well with it. Some use Utrogestan vaginally to minimise side effects but I can't answer your soy allergy question I'm afraid. There are also Cyclogest pessaries but I'm not sure how easily available these are, or of their ingredients other than progesterone. I think one member has had them prescribed recently, but privately. You could google them to see what exipients they contain.
The progestogen in Evorel Sequi & Conti, Norethisterone, is one of the more androgenic (testosterone derived) forms & many women find they don't feel good on this. I used Evorel Conti for a couple of years as my first HRT postmenopause & was OK on it in terms of side effects, but didn't get good absorption & consequently poor symptom relief.
As for the oestradiol products, I find I get on best with the gradual release of patches, rather than once a day application methods like Oestrogel/Sandrena & Lenzetto (spray) which can give rise to peaks & troughs in levels. We are all different in our responses, though my feeling is that hypothyroid women need as much stability as we can get in terms of other interacting meds. I also find cyclical HRT harder to combine with thyroid replacement, for the same reason, but you may have no say in that until you are postmenopause.
The fatigue, oedema, hair loss inc outer third of eyebrows, are classic for low thyroid as you know. Brain fog too, though of course this is also a meno symptom & I can't think there can be a more confusing combination than having a thyroid condition during menopause. So yes, your being undermedicated on thyroid replacement at that time could explain all those symptoms. To complicate matters I find oestrogen causes me to retain fluid, but progesterone is highly diuretic for me, again possibly because of their different effects on thyroid status, oestrogen effectively lowering active thyroid hormone & progesterone thought to boost it. So times of high oestrogen may explain the intermittent oedema.
Unfortunately even transdermal oestrogen seems to mess with thyroid levels for those of us on both T4 & T3 - we have a few members here who have experienced that, including me & my bloods demonstrate it, not just symptoms. You'll know that oestradiol causes an increase in TBG as the possible mechanism behind this situation. Though most of the scientific literature states that only oral oestrogen has this effect, it seems likely that not enough research into the complex interactions between sex hormones & thyroid status has been conducted.
The constipation, weight gain & low mood that you experienced more recently also point to low thyroid, though again all can come with menopause too.
I was found on pelvic scan to have urinary retention (as opposed to generalised fluid retention) in early peri while off T3, that resolved on restarting it, so your difficulty passing urine may be another feature of low thyroid. It can also sometimes be a consequence of constipation (hypothyroid-related or not), due to the resultant bloating affecting the mechanics of emptying the bladder. So it may help to do all you can to optimise bowel function. Unfortunately both progesterone & it's more recently been recognised - oestrogen, can slow bowel function.
The bladder & vulva pain & difficulty with tampons are suggestive of the dryness & inflammation of GSM that happens to so many of us as sex hormone levels decline, but perhaps also an indication of infection. A UTI could also cause urinary retention, so I'd speak to your GP about both bladder & vaginal symptoms if you haven't already & before you consider using progesterone vaginally. Many of us find we need both topical (vaginal) & systemic oestrogen, so I would also ask about Vagifem (tiny pessaries) or Ovestin (cream) for internal use & the weaker Estriol cream (0.01%) for external application if you opt for Vagifem internally. Sorry if I've missed mention of this in your post - I keep rereading but get sidetracked tackling something else!
Yes, I had high prolactin levels long before peri, though no one linked it with being hypothyroid at the time. I believe you are right that the two can go hand in hand. Don't quote me on that though - long time since I looked into it. I would definitely still ask your GP about it as your level is really quite high, as you say.
Low libido can be helped by getting the right balance of oestrogen & testosterone, but again this can be more complicated for hypothyroid women because of the influence of SHBG. It's also not surprising your libido should be low with all you are coping with in terms of other symptoms.
It's a long time since I was in peri & I'm hoping one of the members who's more up to speed about that stage will be along to advise on how best you can manage your HRT needs accordingly, but we are usually advised to use cyclical regimens until postmenopause.
High oestrogen will almost certainly not be helping your thyroid situation & I found the erratic fluctuations of peri to be really very difficult with the thyroid complication, so you have my sympathy.
I'm sorry this doesn't answer all you need to know, but one of the great things about the forum is that someone else will almost certainly come along to help out with the bits I haven't addressed. And perhaps with differing views on the bits I've tried to!
Meanwhile :hug: for all you are coping with.
Wx
-
Hi again fabjellybean, a couple more thoughts.
the Bijuve contains 1mg oestradiol (double that of the Evorel 50)
The chart in the attached BMS link shows the equivalent HRT doses for oral & transdermal products. As you'll see 1mg oral oestradiol is considered a lower dose than that given by a 50mcg patch, but it will vary according to how well you absorb from the various products.
https://thebms.org.uk/wp-content/uploads/2018/08/HRT-Practical-Prescribing-AUG2018.pdf
I would think it's possible that the often stated increase in TBG caused by oral oestrogen could have a greater effect on your thyroid status than oestrogen from transdermal methods, but as I mentioned earlier, from what's been reported by hypothyroid members on here, this relationship seems to be less typical in women on both T4 & T3 like you & I.
I'm not sure why your testosterone is raised, though hypothyroidism is said to cause this in some women (postmenopause), being hypothyroid can also lead to low T levels. I don't know how high it would need to be before PCOS might be considered. It's a condition I know very little about & I can't find anything very useful on it this morning. Maybe talk to your GP to see what she thinks about your raised testosterone level.
As your endocrine situation is quite complex I wonder whether a menopause clinic or endocrinology referral might be helpful if you & your GP feel this could be worthwhile.
Wx
-
Hi Wrensong,
Thanks for your reply on a different thread. I’m not sure how to PM you. So thought I would just reply here. I appreciate the information and like the idea of this thread. Thanks to everyone who is so knowledgeable - am learning a lot. And I love how none of you are negative or have scary responses like on some Facebook groups - which I have now unfollowed as they are just too scary and too unhelpful.
-
Hi dibradley. I think you'd have needed to reach 10 posts before you could send a PM but now you have reached that number so hopefully if you want to use that facility in future you will now be able to. You can click on the blue "my messages" tab, then "messages" & select "new message", entering the member's name in the "to" box, then typing your message in the text box as you would a post. Sorry - not being in messages option at the mo there are probably stages I'm missing out, but don't worry about remembering how now, you can ask anyone on the forum if/when you want to send a PM & they'll tell you how. I also only use the forum on my laptop so not familiar with any differences that may apply using it on a phone.
We all know how unnerving & frightening a time menopause can be, so we try to give reassurance, support & strike the right balance in exchanging accurate info & personal experience with as little ambiguity as possible, in the hope this will help empower others, while avoiding causing unnecessary worry. Nothing that is passed on here can be a substitute for expert medical help, but sometimes a snippet from those who are living with menopause can shed a little additional light that helps someone progress. Please never be afraid to ask about anything, we are all learning from each other, there is a wealth of experience & wisdom here & nothing is too trivial, nothing taboo.
I don't do FB, but sounds as though you are better off avoiding any groups that are not what you need right now. Keep posting as you are far from alone with it all & there is always someone here to hold out a hand.
Wx
-
Thank you so much @Wrensong for your help with such comprehensive information. Having finally got to grips with my complex thyroid situation (there's now not much I don't know about it), I've been completely thrown by perimenopause. I've been finding it really difficult to find good, reliable information about complex cases, so greatly appreciate your knowledge and expertise as well you taking the time to share it with me. I'm delighted to have found you. My GP is very supportive and I'll speak to her next week about everything that's been going on. I didn't mention the mild, intermittent side-effects at the review and am now wishing I had. Finally after 6 days without a patch, my oedema went down and the crippling anxiety I was feeling has gone (those were my most unbearable symptoms). I put half an Evorel 50 patch back on last night to see how I get on with a lower dose of just the oestradiol so I can report that back to the GP and so far so good (mild swelling but no worse than yesterday). I think you're completely right about the slow release products being better for me so I'm hoping to stick with the oestradiol patches (although perhaps might be better with the Estradot that has 25, 37.5 and 50 doses) and now that my thyroid levels are better, it would appear I don't need as high a dose of oestrogen?? I'm actually wondering if my symptoms to start with were low progesterone rather than oestrogen. My body is so sensitive to minor fluctuations in hormones it's a total nightmare (I have to do minor tweaks in my T3/T4 to get where I need to get to because of side effects from big swings). I vaguely remember having some issues with the combined contraceptive pill (pre-hypothyroid diagnosis) and saying at that point that I really wasn't looking forward to the menopause, when in actual fact it's perimenopause that's being the biggest pain (so far!). I have found that splitting my T3 and T4 doses has helped me balance my thyroid hormones (much reduced dips in energy through the day and not taking 2 hours to come to of a morning). I take half my T4 at 6am (set my alarm and go back to sleep when I'm not feeling anxious) and the other half before bed at 11pm, my T3 I split in 3, taking ~1/3rd at 6am, 11am and 4pm. This lets me fit in my supplements without causing any absorption issues (B vitamins, probiotic and ashwagandha at 9am, Vit C and iron at 1-2pm and Fat soluble vits, magnesium glycinate and co enzyme Q10 at 7pm). And having just written that, the only recent addition has been the ashwagandha which I started 2 weeks before I had my review and was changed to the Combi patches. I'm now wondering if that has been causing issues as it's an adaptogen. I'll cut it back out for a while until I get myself on an even keel and then I can reintroduce it without having to wonder what is doing what. I tested my iron, vitamins and magnesium in August too with mixed results (magnesium was extremely low and everything else was sub-optimal so room for supplementation for maximum T4 conversion).
I'm hoping the bladder issues are just being caused by the constipation (I am also taking max Tramadol doses daily for a back issue that I've been referred for and although they haven't caused constipation before, I know they have the potential to so are probably adding to that. I'm hoping they can give me a nerve block or something that will let me keep functioning without them. The testosterone being normal one week and then so high the next is really confusing. I was ready to ask for testosterone gel after the first result as it was expected given my complete lack of libido and poorer function at the gym but now I'm totally thrown. I certainly don't have symptoms of high testosterone and suspect that's because my FAI is still low with most of it being bound. This is from the GP Notebook webpage "SHBG may be increased via thyrotoxicosis, oestrogens and liver failure. This increase in SHBG levels leads to an increase in total testerone concentrations. Despite changes in the SHBG, free testosterone levels generally remain within the normal range because of feedback adjustment of gonadotrophin secretion. There is an increase in SHBG capacity with age." I've started using senna to try to help things stay moving naturally and I'll discuss the vulval pain/tampon issues with the GP next week.
I don't seem to have symptoms of high prolactin (tender breasts [other than just before my period starts] and leaking nipples) but the GP notebook says the following:
"This is a hormone produced by the anterior pituitary gland. Prolactin is a polypeptide hormone composed of 199 amino acid residues.
Synthesis: synthesised by cells of the pituitary (lactotrophs) and only small amounts of prolactin are stored in the pituitary gland
Release: under inhibitory dopaminergic control and stimulatory thyroid releasing hormone (TRH) control
-increased release at night
-in females - increased release during puberty
-androgens may have a modest inhibitory effect on release
-released in response to stress e.g. exercise
-prolactin levels are high during pregnancy - oestrogen causes an increase in numbers of lactotrophs
-during lactation, suckling of the breast results in an increased release of prolactin
Actions:
-breast - milk protein synthesis and excretion in ducts and lobules
-contraceptive effect - seen with high levels of prolactin
-has no established function in males
What level of prolactin is significant?
-mildly increased prolactin levels (400-600mu/L) may be physiological and asymptomatic but higher levels are usually pathological
-very elevated levels (above 5,000mu/L) usually imply a prolactin-secreting pituitary tumour
Note that reference ranges vary between laboratories.
Notes: prolactin secretion varies with time, resulting in serum levels being 2-3 times higher at night than during the day. The levels of prolactin in
normal individuals also tend to rise in response to physiological stimuli, including sleep, exercise, pregnancy and surgical stress."
Blood samples were taken on waking at 8am so I'm guessing this will have increased the amount and that it's been caused by a mix of high oestrogen and my thyroid levels not being quite optimal for me. The higher testosterone in the 2nd sample helps to explain the prolactin reduction. Possibly a feedback reaction with my body trying hard to stay balanced.
The endo who prescribed my T3 is a diabetes specialist and I'm not sure how much help he would be with menopause (if he hasn't already retired). I will ask to be referred to the local menopause clinic if my GP feels out of her depth. I suspect this is going to be another journey of trial and error, then repeat. My GP was happy for me to start the continuous treatment because I had been on the cyclical for 2 years so hopefully she'll be happy for me to try a natural progesterone on continuous with a lower dose slow release oestrogen which will let my body adapt more easily I feel. I would rather use it vaginally too to help reduce the side effects so hoping she will prescribe one of the other brands that doesn't have the soya in them. I saw someone on a thread here mention Lutigest as an option. I'd rather try that before going down the oral Bijuve route as I think you're right in that it will probably cause me more issues with my thyroid, as it is well recognised as affecting thyroid dosing. Tbf there is a warning on the Evorel that it will interact with levothyroxine and liothyronine so unsure why endos believe that it's only oral preparations that affect them. I realised on reading the Menopause Matters page on the different preparations after posting that 1mg oral is considered lower than the 50mcg transdermal and I certainly seem to absorb well by the transdermal route, and not sure about how well I'd absorb the oral preps. I'm also not sure how I'd manage taking the oral preparations away from my thyroid meds given my split dosing so would rather avoid that if I can.
You really need to have the mindset of a detective when you have thyroid problems, never mind adding the complications of (peri)menopause so thanks again for your help. I'm much clearer now in what I think I need to do moving forward and what to discuss with my GP next week. All the research that I have done with regards to my health spurred me to start an MRes in Health Research. I'm currently completing my last module before I start my dissertation so I'm on the home straight providing I can keep the brain fog symptoms at bay. The link between fibromyalgia and hypothyroidism has been my topic of particular interest (and probably what my dissertation topic will be around) up to now but I'm now I'm thinking that I should be looking at menopause in amongst that too.
-
Just found more info about prolactin and maybe that has actually been causing some of my issues. https://labs.selfdecode.com/blog/prolactin-blood-test/ (https://labs.selfdecode.com/blog/prolactin-blood-test/) Main symptoms here include Irregular cycles, Vaginal dryness and Fatigue. Autoimmune conditions are associated - Hashimoto’s disease, Lupus, Rheumatoid arthritis, Psoriasis and psoriatic arthritis. I have had active psoriasis for 4+ years now (diagnosed first when I was 12) and as far as I know haven't had high enough thyroid antibodies to diagnose hashimoto's but 20% of patients never have hgh enough antibodies. I'm waiting for copies of medical records to try to work out what was tested and found 20+ years ago. So maybe my vaginal issues haven't been low oestrogen at all. OMG it's all so confusing. Am I actually perimenopausal??? Or was I just suffering from undermedicated hypothyroidism back in Aug 2020 and thereafter dealing with the side effects of hyperprolactinaemia with the increased oestrogen and I shouldn't be touching HRT yet?? Arrgh!!!! Then again, why the increase in menopausal symptoms when I stopped the patches for a month. Being stuck between a rock and a hard place doesn't come close...
-
Hello ladies.
I just wanted to say that this thread is a great idea given how many of us have thyroid issues. Excellent suggestion Wrensong!
I look forward to keeping up with all the posts on this topic. Given all the information that has appeared so far we will all have science degrees soon alongside fabbellybean lol!
Take care ladies.
K.
-
Hi ladies,
I’m taking 0,25mg of levothyroxin for an Underactive thyroid. Since starting HRT I had a blood test a week ago and my level was 3.6…. But my heart is racing and I can feel it pounding in my chest…. It’s driving me mad. Could this be the medication ? The doc said it’s unlikely as I am on such a low dose. But that I could try cutting my tablet in half and taking that for a while. I’m worried…. I don’t want to mess things up even more. I take 3 sprays of Lenzetto each day and 12 days of urtogestan. Any advice would be appreciated.
-
Hi ladies,
I’m taking 0,25mg of levothyroxin for an Underactive thyroid. Since starting HRT I had a blood test a week ago and my level was 3.6…. But my heart is racing and I can feel it pounding in my chest…. It’s driving me mad. Could this be the medication ? The doc said it’s unlikely as I am on such a low dose. But that I could try cutting my tablet in half and taking that for a while. I’m worried…. I don’t want to mess things up even more. I take 3 sprays of Lenzetto each day and 12 days of urtogestan. Any advice would be appreciated.
Hi dibradley, sorry to hear you're having issues. It's likely to be a combination of being on the basic starter dose, which is never enough and needs to be increased again quite quickly, and the HRT, which despite supposedly not affecting levothyroxine levels if it's topical/transdermal but many of us realised that we do need to tweak our doses. It's also a bit of an unknown fact by doctors that being undermedicated can cause similar symptoms to being overmedicated. I personally wouldn't cut the thyroxine dose as it's going to make you feel worse, but you could take it in 2 doses (morning and bed-time). Cut your tablet in half and take half when you wake and half before bed, but you need to bear in mind that it needs to be taken on an empty stomach so 2 hours after, and 1 hour before any food or coffee, which affects absorption. You can keep the other half in a pill box and mop up any crumbs with a damp finger. I personally find my tablets easier to cut if I take them out the packet a few hours before cutting but not sure if that's just the brand I use. You do need a dose increase though, as when you're taking thyroxine, your TSH levels should be 1 or under for you to feel well. You're aiming to get to 50 mcg a day in the first instance but that is still considered to be a starter dose and you'll likely end up with at least 75mcg daily. You'd be best to try 25mcg in the morning and 25mcg at night or if that feels too much for you at one go, you could take 3/4 of a tablet morning and night so you would be increasing by 12.5mcg a day to 37.5mcg rather than 25mcg. The heart issues you've described can also be caused by poor conversion of T4 to T3 and you need optimal iron/ferritin, folate, B12, Vit D and magnesium for that. If your GP won't check them for you, Medichecks do a Thyroid panel with vitamins/minerals and Thyroid UK have discount codes for members. If you're not already a member of the Thyroid UK Health Unlocked forum, you should consider joining for information on all things thyroid. They don't know a great deal about HRT issues along with thyroid though, hence my joining here. I now already know a lot more than I did previously. We also need an adequate supply of selenium, I take 200mcg daily. I also take iron, vit C, Vit D and K2, magnesium glycinate, a good B complex (with methylfolate and methylcobalamin), Co enzyme q10, omega 3 fish oil and a probiotic but they need to be taken at specific times away some away from others, and a minimum of 2 hours away from the thyroxine for some and 4 hours for others. I can give you more information on that if you need it but it's important not to take iron without checking your blood levels regularly (too much is as bad as too little). Hope this helps, let me know if you have any questions.
-
Hi fabjellybean, I will try to come back to the detail of your latest posts later. An unexpectedly difficult weekend means I am struggling somewhat at the mo. But for now, just a few thoughts, having only read through quickly once.
1) when I read up on prolactin the other day to try to get a better idea of your situation I also came across the GP notebook article among others. The suggestion that prolactin can be raised in hyperthyroidism made me wonder is it possible your thyroid replacement dose is a bit high as I imagine over-treatment could have the same effect? I don't think you posted your recent TFT results - sorry no time to reread the posts just now, but from memory had the impression you didn't think you are over-medicated. It just seemed worth asking what you thought about that possibility given the high prolactin.
2) If not Hashimoto's, then do you know the cause of your thyroid condition? Sorry if I have missed this.
3) You're taking quite a few supplements & whilst I absolutely understand why, have also taken some in the past & still take Vit D (on Endo advice, due to proven deficiency with levels now monitored), I've increasingly found that our reactions on thyroid replacement can be very sensitive & that various supplements can be problematic. For me, frustratingly since peri began, those now include B vits, magnesium & selenium, the latter two I suspect because of their involvement in conversion of T4-T3. It would be hypocritical of me to say to anyone please don't supplement & feeling rotten we naturally want to do all we can to help ourselves, but I always suggest that anyone struggling with their thyroid be very vigilant as to the possible effects of any supplementation, as I would hate for anyone to come to any harm.
My feeling is that our thyroid replacement (& HRT if we are on it) is not only essential to keep us alive & feeling as well as our compromised health permits, but that it makes sense to ensure it's optimised beyond further improvement before adding other potentially interacting substances that could then be unnecessary, or worse prevent us getting the most out of those meds we cannot live without.
I just feel there can't be research into what happens to our precious & very complex bodies on long term thyroid replacement under the influence of any number of combinations of other supplements & though we can read about & become very knowledgeable in what each supplement does in theory, there is less certainty as to what may be going on in reality for those of us with complex health conditions that have profound systemic effects. That makes me very wary & increasingly so as I get older & the body becomes less agile in its ability to adapt to what we throw at it. I hope that makes sense!
As I said, I will try to come back & look again at your 2 recent posts in case anything else leaps out that we might be able to explore together.
Wx
-
Hi dibradley, your TSH suggests you are not having too much thyroid replacement so on its own I would not expect that dose to cause your heart to race/pound. But it can take a while for our bodies to adjust to thyroid replacement & as you're also on HRT that's a second hormonal hit to get used to.
Two thoughts about the HRT.
1) I find Utrogestan causes palpitations, not only an uncomfortably increased rate, but irregularity & indeed ECG has shown it brings back the ectopics I had for many years during perimenopause when I was not on HRT. If your racing heart happens during the Utro phase of your cycle the two could be related.
2) Some women find oestrogen stimulating & if you don't know how well you are absorbing the Lenzetto, whilst it's generally considered to provide lower levels than other methods, it depends on individual absorption, so seems possible 3 sprays might be too much for you at the mo.
That said, palpitations are also quite common in menopause whether we are on HRT or not & during peri the erratic hormonal fluctuations can give rise to this.
Sorry, fabjellybean posted while I was writing this so I haven't taken account of any advice she's given.
I will reply to your PM too.
Wx
-
Word of warning for those contemplating using Ashwagandha to balance your hormones when you have thyroid issues.
I have been doing lots of research on Ashwagandha since my issues multiplied 100 fold and it seems that I should have been doing this research before trying it, and at least keeping a better eye on it. I feel rather foolish now but please let my mistake be your warning so you can avoid this misery.
I started taking one capsule (500mg) every morning 2 months ago (dose suggested 1-2 capsules daily), and then promptly forgot to keep an eye on things between brain fog and being very busy. Forgot about it to the point that I literally only realised when I was writing everything down in a reply to Wrensong. That the only difference in my diet/environment was the Ashwagandha. So I've spent the weekend researching it, and it seems to be very much marmite. If it works for you, it will work well, and if it doesn't... oh my!
There are very mixed messages with Dr Isabel Wentz advocating it's use for Hashimoto's patients while others advise against using it at all if you have autoimmune diseases. It turns out, it is about the immune response and whether it mediates a TH1 response or TH2 pathway response. If you are TH1 dominant Ashwagandha will help you whereas if you are TH2 dominant, it works against you. And given my response to it, it seems I am TH2 dominant (although from the symptom list that wasn't particularly obvious to me). There are articles here that go into it in greater detail for anyone that's interested in reading further: https://drknews.com/are-you-th-1-or-th-2-dominant/ (https://drknews.com/are-you-th-1-or-th-2-dominant/) and https://drdechickerand.com/2017/balancing-th1-th2-immune-function/ (https://drdechickerand.com/2017/balancing-th1-th2-immune-function/).
I have stopped taking it obviously and will need to wait for things to settle again before attempting to reintroduce HRT. The doctor that wrote the second article went on to say that people who are TH1 dominant can use progesterone to help balance the TH1/TH2 pathways so I'm wondering if the combination of my HRT with the ashwagandha has caused most of my issues. I'd been using HRT for 2 years with only mild side-effects prior to introducing the ashwagandha but now I'm reacting wildly to it. Hopeful that my stupidity won't cause long-term issues with it, and that everything will settle in time. Not expecting anything to happen very quickly though!
So moral of the story, if you are going to try Ashwagandha, make sure you aware of the issues and how you may react to it. Ashwagandha itself is known to increase fT3 and fT4 levels so even if you react well to it, you will likely have to decrease your medication. It didn't do that to me and if anything has reduced my fT3 and fT4 levels and I've had to increase my doses to try to keep it up (last test fT4 only 20% through the range and fT3 54%). I'll probably have to decrease my meds again. I test my thyroid levels and all supplement levels regularly because I'm usually so vigilant, so more than a bit annoyed at myself just now!
FAB x
-
Thanks to all of u. U have given me a lot to think about and I appreciate the time u have taken to give me such expert advice.
-
dibradley, just a few thoughts on your last post. (Later edit - where is it?! Am I imagining things - the following was posted in response to a long post of yours that seems to have gone missing!) I'll leave my reply below in here, though it will make little sense as the one I was replying to is now missing . . !
I'm afraid a resurgence of flushes & night sweats is a common temporary reaction to changes of HRT dose, up or down, so doesn't necessarily mean that in the longer term that adjustment in dose is not right for us. It's a manifestation of the body's reaction to the instability. You may well need 3 sprays (or a different regimen entirely), but unfortunately it takes time for us to settle & be more sure of what is or isn't suitable. We are usually advised to give each dose change or trial of a new product 3 months unless the reaction is such that it feels unwise to persevere.
Testing sex hormone levels in perimenopause is usually considered to be not very helpful because the situation is so unstable, so unless your doctor advises this, I would not worry about not knowing your oestrogen & progesterone levels at present. HRT adjustment is usually made according to symptoms at this stage.
I'm not surprised a 50mcg dose of Thyroxine caused palpitations if your TSH has been brought down to around 3 on 25mcg alone. 50mcg will have been too high a starting dose for you. Adding in more Thyroxine at this stage to try to get your TSH down further may increase your palpitations, anxiety, insomnia, night sweats & flushing as these can be symptoms of too much thyroid replacement (as well as due to menopause - I know - frustratingly confusing this combination of conditions). If your doctor advises increasing your thyroid dose now however - many like TSH to be around or a little below 2.5 - I would talk to her about making only a very slight increase as you will be less likely to become over-treated that way. I don't know what brands are available in Holland but here we have TEVA which comes in 12.5mcg tablets that can be halved to give a very small dose of just 6.25mcg. When making minor dose adjustments we can even add that tiny dose in every other day to be very cautious, then retest after 6 weeks to see how things stand. I'm afraid no one can tell you for sure what is the right TSH (T4 or T3) level for you - it's very individual & may change with time. It depends on what you feel best on.
If you have a B12 deficiency that can cause a range of symptoms, palpitations included & it's really important to address that, so with any luck the B12 injections will make you feel a good deal better.
Most hypothyroid patients, around 85% it's said, do very well on T4 alone. Only around 15% have problems converting T4-T3, so it's very likely you will be among the high proportion that doesn't need to take T3 as well. A good endocrinologist is invaluable in cases where patients don't respond well to T4 alone, but uncomplicated hypothyroidism is usually managed at GP level - at least in the UK. So as you say, private healthcare can be very costly & I think in your shoes I would defer that step for now. If your GP can test T3 that would give you an indication of how well you are converting - that may be possible in Holland, I don't know, but the NHS is usually reluctant to test it here for hypothyroid patients.
There is every chance that given time to stabilise on HRT & thyroid replacement you will feel a lot better - especially if there is currently need for B12 injections, which complicates the picture at present & makes it difficult to know what may need changing.
I would not start zinc supplements at present unless you know there is a deficiency & your doctor advises this, but this is my personal feeling based on my own experience & others may advise otherwise. Please go with whatever you feel most comfortable with. W x :)
P.S. I see another post has been written while I was compiling this, so I have not taken account of any advice given there.
-
Following this thread as I’ve been hypo for 25 years.
Wondering about testosterone- I feel I’ve read getting that right if on thyroxine can be challenging?
Though I know Davina is on thyroxine and testosterone alongside hrt.
My testosterone level was 0.15 recently tested on medichecks.
I’ve been having issues moving up the levels of oestrogen with slightly swollen and v achey feet at times. I switched to taking Utrogestan orally (x1 continuously, was on cyclical vaginally but Gp okayed me to try continuously.)
I’ve found that I need and respond well to oral utro and added a vaginal capsule when a friend who’s a Gp mentioned higher levels were needed for higher patches (will be speaking to my own Gp in a couple of weeks.) feet are definitely less swollen though foot joints still seem bad first thing. I’m wondering if I have arthritis or if testosterone will help.
Have I read something about utro and SHBG? Lowering?
-
Hi Clarella, like you I've been on thyroid replacement for decades & for a few years postmenopause on HRT with testosterone.
Could your swollen feet be down to fluid retention from the increased oestrogen? Med-high doses of oestrogen certainly make me retain fluid. Easy to tell what does what on a sequential regimen. If Utro has improved your swelling, I find it highly diuretic so that makes me think perhaps oestrogen dose related fluid retention could be the issue with your feet. You'll know that hypothyroidism also unfortunately predisposes us to joint issues.
I think I remember you posting that your TFTs have not changed on HRT & that you're on Thyroxine alone? Is your T3 level adequate?
If your testosterone is low & you have deficiency symptoms you could try it & see how you feel? You're right, it is said that SHBG can be more of an issue for hypothyroid women, but also that levels should normalise with optimal thyroid replacement, though how well this works in reality I'm not sure, given thyroid replacement can't perfectly reproduce what happens with a healthy thyroid. There seem to be so many factors affecting the interplay between thyroid & sex hormones, SHBG & TBG that personally I try not to overthink it. My feeling is we can't take less or more thyroid replacement than our bodies need simply in order to manipulate SHBG levels. There are said to be various other factors that influence SHBG that may be more within our control, such as oestrogen dose, BMI, exercise & alcohol intake, if you want & are in a position to have your level tested & try to improve it if need be.
With no ovaries I feel better for a little replacement T & though my level on T has never tested above mid-range, I've been on & off it to try to gauge effect on hair loss. It's still a suck it & see situation for me.
-
Hello lovely people, so a wee update and a another request for your help please. I stopped using the evorel conti patches after my bad reaction to the norethisterone. My GP, who I thought was supportive has been a major disappointment like most of the others that have gone before her given my complex history. My appointment with her to finally discuss all this was on the 14th Dec because she's part-time and had been on annual leave. She was happy to change my HRT and agreed to leave me on patches because I was wary of the greater variability in dose with the oestrogel and how that can affect hypothyroid folks. She said I could try the natural progesterone as it was likely to be the progestin I had reacted to. I asked if there was an alternative to utrogestan due to the soya lecithin which I'm trying to avoid due to high iGg and was told they had no say in it, they only prescribe micronised progesterone and that's where her influence ends. I started the patches again after 3 weeks off and my oedema came back with a vengeance so couple of days later when my period started I started taking 1 utrogestan orally at night to see if it made any difference. It did, and within 3 days my oedema was completely gone and I started feeling much better in myself, and all my symptoms improved. However within a couple of weeks my anxiety was back up and I had to go back to her again when the surgery reopened on Wednesday this week, as it is really affecting my ability to function properly. My BP is good at 106/61 HR-78. She prescribed sertraline, which I'm reluctant to take if it's the hormonal imbalance that's causing these problems. She also prescribed propranolol (beta blocker) to take as and when I need them (10-20mg up to 3 times a day) as the sertraline can take up to 6 weeks to kick in and it's likely to get worse before things get better, and I have things I really need to get done over the next few weeks (a uni assignment being one of them). I took 2 of the propranolol on Thursday as I didn't want to start both at the same time in case I have a reaction to either of them. I can't say that they reduced my anxiety any and left me with what I can only describe as a sore brain type of headache as they were wearing off. BP went down to 96/55 (60) about 6 hours after I'd taken them. I then read about the effects of propranolol on T4-T3 conversion, which is my particular hypothyroid issue that has taken me nearly 5 years to manage well so I got myself into a complete state and had to go back to see a different GP on Friday who prescribed me a short course of diazepam to get me through the next few weeks. And the oedema that had settled, has started to increase again along with quite severe breast tenderness, constipation and other symptoms. I'm wondering if it's due to too much oestradiol, so yesterday I halved my patch to see if that helps. It has reduced the breast tenderness but I haven't noticed any reduction in the oedema which gets worse throughout the day but that was only yesterday. However, I woke up this morning absolutely soaked in sweat! My thyroid bloods in Nov just before the height of the anxiety were good, if anything a little low T4 -14 (12-22), T3 5.1 (3.1-6.8 ) and TSH suppressed but that's normal when taking liothyronine. I'm due to have them checked again along with my prolactin levels which have been high. I told my GP about all the bloods and the prolactin was the only one she was interested in but doesn't believe that Medichecks blood tests are accurate so wants to check that herself. But just to make sure, it isn't high thyroid hormones causing the anxiety, I halved my T4 for almost a week and haven't noticed any reduction in the anxiety and am getting my usual hypothyroid symptoms again. So back up to my usual dose today. My first question, do you think I'm right about the oestradiol being too high and should stick with the half patch for a while or should I use the whole 50mcg patch? And secondly, I'm considering seeing a menopause expert privately to see if I can get this sorted out, or a least improved. Is this something that any of you have done and is there anyone in particular that you would recommend? Dr Meyer's clinic looks good but anyone can write their own reviews so I'd like to hear from anyone who has been treated by her.
-
Setraline (sp) can be a life saver. Many women find that they require both ADs as well as HRT. There are a few ADs that can ease panic attacks and anxiety.
Your breast tenderness may be cyclical. Even now, years after my last period, occasionally I feel an 'ouch' in one or both so my ovaries are probably muttering in the background.
Any oedema should be investigated as it may be linked to heart disease or a reaction to some of the medication: some are sensitive to fillers and/or packaging rather than the active ingredient. It's such Trial and Error that it can become so tiring :-\
-
If it’s helps I was on beta blockers (slow release ones) for years with thyroxine due to performance and social anxiety (possibly also hypermobility, it’s supposed to help) and I didn’t notice much difference. One offs when you’re bad wouldn’t much of make a difference imo, especially as you’re on T3. But if taking them causes more anxiety there’s not much point.
Sert has been the only ad that ever really worked for me (it was always that I was in the wrong level of thyroxine!) for post partum anxiety but I stuck with that and it helped really well - just takes a while. It’s got a 24 hr half life so best to stick to a time to take. (No one can agree on morning or night!) it gave me insomnia at first and sleepiness in the day but eventually sorted itself out.
I was getting painful Odema in my legs and feet when slowly upping oestrogen. Was fine on 50 but awful meno symptoms. the issue started as I raised to 75. I had to go more slowly up to 100; it’s taken 5 months.
Continuous utro definitely helped this but also persevering- I think bodies take a long time to adjust both with thyroid and hormones. I had to wear support socks on my work days for a while but seem fine now. I think some gym sessions helped too - really pushing on a bike.
Gp just agreed I can do 2x utro on a 25/3 regime. I have been before I see her but one tablet vaginally. So I’ll tell you how I get on.
Only issue might be that this means I have to lower T4 as I believe utro increases t4 - I’ve been feeling buzzy and hyped she also agreed to a test .
-
Thanks CLKD and Clarella. It does indeed seem that it's cyclical breast tenderness as my period appears to be starting again. Only 3 weeks since the last one which is typical of my undermedicated hypothyroidism (I'm normally every 32/33 days). But jeez oh they are more painful than they've been since I was last pregnant 21 years ago. And I'm definitely not now. It would have to an immaculate conception the way I'm feeling these days. My libido has well and truly left the building. My partner is currently reading the Advice for husbands and partners that I emailed him so he has a better understanding of what's going on. It definitely seems to be the oestradiol that's causing the oedema (whether the patch or excipients) but it's not as bad as it was in Nov at the height of my problems so I'll continue to persevere with it. Being tested again for prolactin in a couple of weeks along with TFTs so that will hopefully show what's going on and why. I do realise that I might never know though. I've stuck a 50 patch back on today because the night sweats over the last 2 nights on the half patch have been awful, as well as hot flushes through the day. Which also makes me think I've overdone the Thyroxine dropping - I get this worse when I'm undermedicated. Oedema not as bad tonight as it was last night or Saturday night. I've also realised I'm my own worst nightmare, I'm not leaving things long enough to settle before changing things around. And I should know better because I take longer to settle on new thyroxine doses, so other hormones are likely to be the same. I still haven't plucked up the courage to take the sertraline yet but thanks for your advice, I'm a bit less anxious about it now, just want to give things another couple of weeks before I start them. I have a uni assignment due in next Tuesday and I can't do that while feeling worse than I already do given how much I tend to react to medication and the slower time it takes for my body to get used to it. I also have a bit of hypermobility noted by the rheumatologist and have a fibro diagnosis although quite convinced that was caused by poor T4 to T3 conversion. My fT3 was never routinely tested so Clarella if you can get your doctor to sign off on that test as well as TSH and fT4 you'll get a better idea of what's going on with you. I've just had a copy of my medical records and my rheumatologist tested my fT3 (which was under range) and asked for my bloods to be retested along with Vit B12 and D, as he felt that was probably my problem. Sadly, although tested again and still below range nothing was done. I wasn't referred to an endocrinologist until 18 months later after I'd argued my case to be referred for a T3 trial (again after fighting my own corner). I haven't looked back since although getting there was no walk in the park. One of the letters to my GP from a junior doctor who didn't want me to have the T3 at my second appointment and was an arrogant twat, stated that although my bloods showed a TSH of 6.89 and low fT4 and fT3 (no wonder really when they dropped me 50mcg T4 and replaced with only 10mcg of T3), he wouldn't increase my dose because he was sure I wasn't taking them appropriately. He basically accused me of not taking the tablets at all to get a higher prescription. All I wanted was to feel better so why would I mess about when I had finally got the trial. Thankfully at the next appointment I took a friend for support and saw the head guy himself, who sorted everything out for me. That's my main reason for wanting to see someone privately, but if I decide against the private route just now, I'm going to try to talk the GP into referring me to the NHS menopause clinic to see what they have to say at least. Thanks again for your help, much appreciated.
-
Hi everyone, I’m so thrilled to find this thread. I have never felt alone as I have the past few years navigating hypothyroid and menopause symptoms.
I’m 44 and been told I am in early menopause. I’ve been on cerezette for years and so no periods to monitor etc. the last 2-3 years I have been struggling with dreadful anxiety, panic attacks, brain fog, poor concentration, night sweats, hot flashes, no libido etc. I was told repeatedly that it was my thyroid. It was so different to any anxiety or panic I had before though. I was fearful for my life. Petrified of most things and couldnt function properly at all. Scared of everything and crushed to version of myself i didn’t recognise. I was too long for it to be menopause. Then I couldn’t have an fsh test because I was on cerezette. Finally had one and it was 56.4 but my TSH was 0.03 and so it was likely my TSH that was the problem. They messed about my my thyroxine, dropping it every 6 weeks until I was at half my dose. My TSH didn’t change. My t4 fell to bits just as I did- I was utterly broken. Happy to consider death as my only option out of it (not sucidal, despairing).they refused to consider anything else and I had to have a second fsh for it be a firmer diagnosis but they wouldn’t do the test as it was just my thyroid…. I decided to go to a private endocrinologist. They did all my bloods and found my fsh was 56.4, lh 31, oestrodiol <18, and so on. They upped my thyroxine and started me on hrt. That was revolutionary. I felt a short period of time where I was how I used to be. Sadly since then I have yo-yo’d a bit. Started t3, brilliant. Given the mirena, Lenzetto and tostran. Amazing! Problem is it seems everytime I have an adjustment on one- it tips the balance of the other. So I go up on thyroxine- it then depletes my oestrogen and then I chase my tail playing tag with my doses. I am feeling pretty beaten at the moment if I’m honest. any ideas on how to manage this any better?
-
:hug: peri-menopause can be debilitating, throw in thyroid function disorders and 1 hormone seems to upset others.
Hopefully some1 will be along.
-
Hello Helly1977 & :welcomemm: So sorry to hear of all you've been through, which sadly is not uncommon when thyroid probs meet menopause. Circs not conducive to writing much at present, but just wanted to welcome you & say that you are not alone with it all now as the many wonderful women we have on this forum will want to do all they can to help.
Will try to come back to this thread at some point, meanwhile :hug:
Wx
-
Hi again Helly1977. Would you be happy to tell us your current symptoms, together with any recent TFT, testosterone & oestradiol results, if you know them (i.e. since starting HRT)? Also how long you have now been on this regimen, how many sprays of Lenzetto you use & how much Tostran? That might help us get a better idea of how things stand.
Your body has had to accommodate a lot of hormonal changes, becoming menopausal, Thyroxine dose reduced, then back up, starting T3 & the 3 components of your HRT regimen, it's no wonder you are not feeling as well as you need to. I'm afraid it can take quite a bit of tweaking to get it all in balance, which can be frustrating as you have found, but it should be possible to improve on how you are feeling now, with perseverance.
The good thing is that you have had help from a good Endocrinologist who listened to you & validated your symptoms, which must have been a relief, so you are at least now on the right road. Can I ask, are you in a position to go back to him/her for reviews or was it a one-off consultation?
Like you I'm on T3 & T4, but very long term hypothyroid & also long postmenopause. I remember only too well though, how difficult & frightening a time were the initial years & how very alone I felt with it all as medics didn't seem to know what was going on with me, so you have my sympathies.
Personally I find the more steady release from oestradiol patches suits my body better than any of the once or twice a day methods, but you may be different & if Lenzetto controls your menopause symptoms well enough I wouldn't suggest changing it just now. If you are on Mirena you have the big advantage of not having to try to balance your thyroid with a cyclical progestogen, so it should be easier to get you feeling stable.
We have quite a few hypothyroid members on HRT, with a wealth of cumulative experience, so you shouldn't be short of support & advice on here. Do come back & tell us a bit more if you are happy to share details.
Wx
-
Hello everyone!
I haven't been here for a while so I hope all you ladies are all as well as possible!
Big thanks once again to Wrensong for this thread :)
Sorry, I won't be able to provide any Hashimoto-related help/advice today because I'm really struggling with the Hashimoto / peri combo... I can't even think straight (very bad night's sleep due to hot flushes / whooshes of anxiety and nausea) but I'll try to write down my head-scratching query...
Here goes: for those of us in peri, given the DAILY hormonal fluctations of our reproductive hormones, how do you get the HRT dose right so that you don't end up overdosed in oestrogen?
I'll explain: a year ago, my peri symptoms cranked up to become unbearable (night sweats Big Dipper style with anxiety and nausea, poor sleep, very low mood, not wanting to be here sometimes). So beg Nov my gyne's colleague (my own gyne was on a month's hol) put me on oestrogen gel (Estréva 0.1%) 1 pump/day. (I'm on Cerazette and in France they let peri women stay on Cerazette + the gel because we get frequent ultrasounds to check our womb linings.) After 5 days I was a new woman! All symptoms had almost vanished! Then 3 weeks later my own gyne came back from hols and said, come in and see me and made me stop the gel + pill for a week to "see where I was at" (blood test revealed peri) and then put me back on the pill + gel BUT this time I didn't get the magic feeling, so after 3 weeks I asked to increase the gel and was allowed to add another 0.5 pump. Well, I ended up so ill (weak, nausea, feeling faint and dizzy) that I couldn't leave the house for 9 days.
My GP said decrease to 0.5 pump, so I did that for a few days but my endocrinologue stepped in and said, come off the gel, your body can't cope with the fluctuating hormones + the gel because when you are high in oestrogen you are overdosing your body with the gel too - once you are through the meno this will be fantastic treatment for you. And she put me on a natural treatment called Sérélys Méno which has really calmed the night sweats and means my sleep is better.
BUT, for weeks now I've been getting terrible spells of feeling weak / shaky / nausea / period cramps that just come on in the blink of an eye and last for several hours to half a day. They're very frequent, almost daily and it's very hard to work or be/do where/what I'm meant to be doing. I had a big check up with my GP this week who has ruled out everything else (because of Hashi I've been tested for so many things over here...) including my thryoid dose which is ok for the first time in a year and she said it's the meno. She said, could you not just apply a tiny amount of the gel everyday?
I haven't a clue if I could just apply a pea-sized amount of the gel everyday! Has anyone ever done that in peri? I'm waiting for a call back from my gyne, so I'll let you know what she says, in case my experience could help anyone else.
I had no idea peri could make women feel so terribly ill...
On that positive note, I shall end. Thank you for reading this long ramble, I hope it makes sense!
xxx
-
Hi @wrensong. Thanks for your post. I can go back to the endocrinologist but I wasn’t sure if I should go to him or a menopause specialist?
I started on the HRT regime in June 22.
I’m certainly happy to share everything and I’m so relieved to hear that there are others who can share their experiences, hints and. Survival tips! A huge relief.
My current symptoms are (brace yourself!)
disturbed sleep,
Waves of complete exhaustion
Itchy skin
Brain fog
Excessive worrying
Poor concentration
Irritability
Crying spells
Little feelings of interest or enjoyment in anything.
Low mood- like really low mood. I haven’t felt suicidal but I have felt completely disengaged/disinterested in anything bad happening to me. ( this is a massive shift from before as I was scared of everything and so fearful of dying etc)
Interestingly, a lot of these symptoms come later in the day and so I thought I was just tired but now I wonder if the slow release option you mentioned might help with this.
My current medications are
Thyroxine 100mcg + lyothine 5mcgs
Mirena
Lenzetto 3 sprays - (gone up to 3, about 5 weeks ago)
Tostran- 1 pump daily
My most recent full bloods were TSH <0.03
Free T4 14.9
Free T3 5.68
Oestrodiol 53
Testosterone 2.98
Then when I started going full uncontrollable crying etc they rechecked
TSH 0.03
t4 12.6
(They wouldn’t check any others)
I have been recording my symptoms to take to the doctor when I go next. Not that I’m confident I’ll be heard.
Thanks for sharing any thoughts on this, Helly
-
Hug KOS ;). You already know my thoughts & that I didn't take HRT (but for a month) in peri, so I'll leave your post for someone else to answer.
Wx
-
Helly, thanks so much for coming back with the detail, that's so helpful :). I hate to ask you for more, but if not too much trouble could you please give the dates & ref ranges for both the recent TFTs & sex hormone tests you've given results for, so we can see them in relation to each other & how they relate to the increase in Lenzetto?
I have to rush out now but will try to come back to you later. A lot to think about after just an initial scan of your post, so I'll need to give more thought when more time, but initial thoughts . . .
1) Is 53 your oestradiol level on 3 pumps of Lenzetto? If so it is very low, so you are not getting much from it in the way of oestrogen replacement. Sorry if I have missed something here - in a rush!
2) Yes, maybe the continuous release of an oestradiol patch would suit you better & importantly give you better absorption. Lenzetto has come to be regarded as quite a weak method in terms of uptake of oestradiol for some women, but as always with HRT response varies.
3) if you are taking your 5mcg Liothyronine first thing in one dose as I do, the worsening in some of your symptoms later in the day (e.g. exhaustion, low mood) could be due to its effects wearing off to some extent; as you'll know it has a short half life & I notice a difference mid-afternoon. Are you prescribed the 5mcg tablets that you could halve to take in 2 doses, or are you already having to split higher dose tabs to get the 5mcg dose?
That said your last TSH (if 0.03), is suppressed, suggesting you are getting ample thyroid replacement overall & perhaps a little too much, which can also cause a sense of burn out, though the 12-ish T4 that you give with that is not high.
Sorry - another question: when were both TFTs done in relation to that day's dose of thyroid medication i.e. do you defer your day's dose until after the blood's drawn for TFT?
Sorry to ask for more. Will try to come back to you later.
Wx
-
Hi Wrensong, thank you for taking the time to work this through. Bloods and ref ranges below.
3rd December.
TSH 0.03, RR 0.35-4.94
t4 14.9,RR 9-19
t3 5.68,RR 2.6-5.97
progesterone 0.4, RR not given
oestrogen 53 RR not given
testosterone 2.98 RR 0.5-1.7
24th feb
TSH 0.03
T4 12.6
Increased to 3rd spray 10th feb
T3 started oct ( sorry it’s actually 10mcg/half 20mcg tab) endo said I could try the other half tab at lunch but to be honest, I did t want to mess about too much!
Bloods taken lunchtime and meds taken early in the morning, 6-6:30am
-
:bouncing: for New Members
-
Hi Helly, thanks for the additional detail which is very helpful :).
Because your TFTs were carried out within a few hours of your having taken your morning thyroid meds that recent influx of hormones will be reflected to some extent in the results, making it more difficult to get an idea of your background thyroid status. For this reason many Endocrinologists, mine included, like patients to defer that day's dose until after testing. I realise this may not be practical if you are working & need to fit a TFT into your lunch hour, especially given the advice to avoid taking thyroid meds close to any mealtime means you would possibly have to go to work without breakfast in order to attend at early morning TFT. If your Endocrinologist has advised to test after that day's dose, then obviously follow his/her advice.
Bearing in mind the likely influence of that day's dose on the results making them more difficult to interpret, it does nevertheless look from both tests as though your thyroid replacement dose may be a little high, as your TSH @ 0.03 is suppressed, below bottom ref range.
Your FT4 in both tests is not high, but your FT3 was towards top of ref range in the Dec test, so it may be that the 10mcg dose of T3 is too much for you, taking your TSH right down.
Thedisturbed sleep, Waves of complete exhaustion . . . Excessive worrying . . . Poor concentration . . . Irritability
could be signs of too much thyroid replacement but they are also aspects of menopause for many of us. I would certainly not feel well with a TSH as low as 0.03, but we are all different, you are younger than me & at your age I did need my TSH to be somewhat lower than is optimal for me now. That said, we are usually advised not to remain on a dose that gives a suppressed TSH for any length of time as this can be detrimental to heart, bones etc in the long term.
Though most of the symptoms you list in your earlier post are not classic for over-treatment, if you have a fast pulse rate, feel too hot much of the time, pass high volumes of urine, have overly fast gut transit (possibly loose bowels, or even dehydrated stools if you are peeing excessively), racing thoughts, anxiety, unreasonable hunger, weight loss/inability to gain weight, I think it would be sensible to talk to your GP or Endocrinologist about having 5mcg T3 tablets prescribed instead of your 20mcg tabs & possibly reducing your current 10mcg T3 dose to 5 or 7.5mcg daily. If you were to reduce to 7.5mcg, you could take the 2.5mcg in the afternoon, to reduce potential for adverse effects on your sleep.
If you don't feel you are over-treated, an alternative is to discuss with your Endocrinologist or GP possibly splitting your T3 into 2 x 5mcg doses, one first thing & one mid-afternoon - not too late in the day as again that could make it difficult to get to sleep.
The irritability could be due to too much thyroid hormone, but perhaps more likely too much testosterone & this would tie in with your 2.98 Dec result being quite a bit above top of ref range. You may need to reduce your Tostran dose/dosing frequency, or ask to change to a weaker formulation such as Testogel. If you have a look at this link from the British Menopause Socy they recommend using Tostran only on alternate days:-
https://thebms.org.uk/wp-content/uploads/2022/12/08-BMS-TfC-Testosterone-replacement-in-menopause-DEC2022-A.pdf
As you've not had oestradiol tested since increasing to 3 sprays of Lenzetto, you won't know how well you are absorbing that until your next oestradiol test. Can I ask how many sprays of Lenzetto you were on when your oestradiol tested at 53 & how long you'd been on that dose? You say you started HRT in June last year but I think not whether that was on 1 or 2 pumps of Lenzetto. Please don't worry if it's a pain to post that info, but in the absence of a recent oestradiol test it would give us an idea of how the Lenzetto might be performing now you've been on 3 pumps for a while. As I mentioned earlier 53 is pretty low on replacement oestradiol & it's unlikely you will feel the benefits of HRT until your level is considerably higher.
Sorry this is a long reply but I hope something in it might help.
Wx
-
Hi Helly1977, just wondering how you are & whether anything in my posts made any sense in relation to your situation. If you're reading, please let us know at some point how things are.
Wx
-
Hi Wrensong. So sorry I have been slow to reply. A lot of what you said in your post makes sense. The one thing I don’t understand is that regardless of my t4 &t3 by TSH never seems to change. they have investigated all sorts with no conclusion.
I guess the thyroxine will be coming down at my next gP appointment but I’ll be honest I’m scared about that. I know what you are saying about some of the symptoms being the same for over medicated thyroid however they feel very different to when I have had symptoms before. For example, high levels for me is usually palpitations, anxiety panic l and difficulty getting to sleep etc,. I haven’t had most of those and the sleep issue is different in that I can get to sleep but keep waking up.
The increase to 2 sprays of Lenzetto was back in September so two months before my last oestrodiol levels.
In terms of how I’m going at the moment, it’s not good to be honest. I feel so low in mood and have lost my desire for life so much that it frightens me. I know I need help and drug changes but the gP always bangs on about my thyroid however I know me and I know that’s not the fundamental issue. At no point when my levels have been badly out, have I ever felt this way. It tears me up to write this because not only is it frightening to feel this but the realisation that they can’t help
You, at least not quickly.
-
Hi Helly, thank you for the update. I'm sorry, I need to rush out just now but will come back to you again later. Just wanted to say I so hear you on the awfulness of it all & felt the fear you do myself, but that it does get much better in time.
Sending you this for now :hug:
Wx
-
Thank you Wrensong x
-
Hi again Helly, having a look at your earlier post now.
The one thing I don’t understand is that regardless of my t4 &t3 by TSH never seems to change. they have investigated all sorts with no conclusion.
When you say your TSH stays the same regardless of your T4 & T3 levels, do you have the results of any earlier TFTs when your T3 & T4 were lower? It would be helpful to see what you mean. I'm no expert on this (or anything else for that matter) but if the pituitary hormone TSH is low/suppressed when T3 & T4 are also low, I believe this can (rarely) happen if the pituitary gland is not working properly. However, I'm sure your endocrinologist will have ruled that out.
Unlike your TSH, your FSH (56.4) & LH (31) - also pituitary hormones - were not negligible, but in postmenopause range, tying in with your then below range oestradiol of <18. So that seems reassuring, as I think it suggests your pituitary is responding as expected in menopause, so presumably it's working OK.
I guess the thyroxine will be coming down at my next gP appointment but I’ll be honest I’m scared about that.
I think it might be more helpful to reduce your Liothyronine as your FT4 results (if 14.9 & 12.6) are not high, whereas your FT3 is close to top of the range, so I think part of the reason you're feeling so unwell could be that these two are not balanced as they would be if your thyroid were working properly. You may in fact need a little more Thyroxine & less Liothyronine to feel better. I don't know for sure - your endocrinologist would be the right person to advise on that.
Two things I should have thought of before to help get a better idea of the background to what's going on. First, can I ask have you ever been diagnosed with Graves & had treatment for that leaving you hypothyroid, or if not is it Hashimoto's & how long have you been on replacement? Also, are you underweight/low BMI? Please don't feel any pressure to answer if you prefer not to.
I know what you are saying about some of the symptoms being the same for over medicated thyroid however they feel very different to when I have had symptoms before. For example, high levels for me is usually palpitations, anxiety panic l and difficulty getting to sleep etc. I haven’t had most of those and the sleep issue is different in that I can get to sleep but keep waking up.
I think your instincts are important & I hear you on the change in sleep disruption, but I'm afraid menopause can mess with our formerly reliable instincts, sometimes misleading us. I'm also confused because you did list anxiety & panic as long term symptoms in an earlier post in this thread:-
the last 2-3 years I have been struggling with dreadful anxiety, panic attacks . . . night sweats, hot flashes
All of those can be symptoms of over-treatment with thyroid meds as you know, but of course they're classic for menopause too & we know from the diagnostic bloods your endocrinologist did that you do seem to be menopausal. I'm sorry - it's a confusing mix, bless you & this is the problem at menopause for hypothyroid patients & medics alike. It's just really important that if your thyroid medication is wrong this is addressed.
The increase to 2 sprays of Lenzetto was back in September so two months before my last oestrodiol levels.
So if you were on 2 sprays of Lenzetto for 2 months before your oestradiol tested at 53, that's really very low & I suspect on 3 sprays you are still not getting therapeutic levels, which is likely part of the reason your mood is so low. Are you expecting to have another oestradiol test soon? With poor levels like that from Lenzetto, I think you probably need to change to patches or gel. As I said earlier, I'd suggest patches, as I find these provide a bit more stability than the once/twice a day methods & I think that can be helpful with a thyroid condition.
they can’t help You, at least not quickly.
If it's your T3 dose that needs to come down, the good thing is that its short half life means it's out of our system a lot quicker than Thyroxine.
I'm so sorry you're feeling so awful Helly & if you really feel your thyroid is not part of the problem you might feel more comfortable trying a menopause clinic as you suggested earlier. I also wonder whether you feel you might want to ask about an antidepressant for your low mood & sleep disruption, just to help you through this very difficult phase until your HRT & thyroid are better balanced. Many of us need to take one with our HRT, either short or longer term & they can be very helpful.
Hypothyroidism & menopause can be a very difficult combination & you're having to deal with it at quite a young age too. I hope you have someone supportive at home. Please do contact your GP or Endocrinologist soon, as I feel you really need some professional support with this. My heart goes out to you.
Wx
-
Wrensong thank you so much for taking all this time to work through this.
My comment about my TSH is probably a bit dramatic. It has evened out in the past. I guess it’s more the past year that it’s been really reluctant.( I don’t have graves or hatishmoto’s btw) I am overweight- obese thanks to the recent weight gain where I have put a lot of weight on. Can I ask about your comment about my fsh, lh and oestrodiol being in the post menopausal range. It sounds silly to ask but does that mean I am post menopausal or still peri?. I was told I was early menopause but couldn’t work out where that placed me. Looking at advice for exercises, diet etc, it seems to vary if you are peri or post so that would eb good to get some insights.
Regarding the Lenzetto, I went to 2 sprays in September and my bloods checked in the December were 53. I didn’t go out to 3 sprays until the February.
I think I am going to request my bloods to be repeated and arrange to meet with the GP. If I have no success I am going to the endo guy again as he saved me before. Either way my head feels clearer and calmer today so hoping it was just a blip. Thank you, you are amazing xx
-
Thank you Helly, that's really kind of you, but it's what we're here for :).
It's good to know that your TSH has varied in the not too distant past as that indicates your pituitary is responsive to your thyroid hormone levels. Given your high FT3, as I said earlier, I suspect the 2 recent TSH results are just suppressed because there's been a bit too much thyroid hormone going into your system for a while.
I'm surprised to know you don't have Hashimoto's. Thank you for confirming the hypothyroidism is not a result of earlier Graves treatment either. If you know why you're hypothyroid it would be helpful to know e.g. congenital, resulting from radiotherapy etc, but please don't feel you have to say if you'd prefer not to.
Thank you too, for your honesty in answering the weight question. I'm sorry to have asked something so personal & should perhaps have said my reason for asking was that I was worried that if you'd been inadvertently on too much thyroid replacement for any length of time & that had resulted in your being underweight, that could have been the reason for an early menopause. Women with Hashimoto's have a higher risk of early ovarian insufficiency, but obviously that's not applicable if you don't have Hashimoto's. I was trying to make sense of your situation so that I don't suggest anything inappropriate.
What I meant by your FSH, LH & Oestradiol being in the postmenopausal range was simply that I'd checked the lab reference range for one of the Health Authorities near where I live as I wasn't sure about the range for LH and both FSH & LH at those values are classed as postmenopausal. Though LH at that level is also found in premenopausal women, I think your doctor will have been looking at the the 3 results together to suggest that you are in the menopausal transition. But we need to have had 12 months free of periods to be officially classed as postmenopause & even then, some women have further spontaneous periods, meaning they were not actually postmenopause at that 12 month point. So the lab ref range is simply giving an indication of hormone levels in that woman's body at the time the blood is drawn, to provide clinicians with a tool to help them confirm or rule out a diagnosis they are considering on the basis of symptoms & history. So, I can't tell you exactly where you are in the transition & if you have a Mirena preventing bleeds it will be difficult for you to be sure.
Yes, I understand you only went up to 3 sprays of Lenzetto in Feb, but what I meant was that as you were only getting an oestradiol level of 53 from 2 sprays, it seemed unlikely that going up another spray would give you enough to significantly improve your menopause symptoms. But you won't know until you test again.
I think that's a good plan to ask to have your blood tests repeated, see your GP & if need be go back to the Endocrinologist you made good progress with. As you don't feel you are having too much thyroid replacement despite your TFTs suggesting otherwise, can I suggest you ring/email your Endocrinologist's secretary & ask what conditions he advises for testing, i.e. does he prefer patients to defer that day's thyroid meds until after blood is drawn & follow his advice for your next test? As I said earlier, it's more difficult to be sure of what's going on if blood is taken within a few hours of your meds & as you yourself don't feel over-treated & your instincts are important, I think you really need to be as sure as you can, so that whatever changes are agreed they're right for you. It might just be possible that blood having been drawn only a few hours after you took your meds, the TSH is testing misleadingly low & the FT3 high because they're responding to the very recent, quite big dose of T3. That's why many endocrinologists like us to test first thing then take that day's meds afterwards.
I'm sorry if some of what I've written in the past few days has not been what you'd hoped to hear, but I really want & also feel a responsibility to try to make sure you don't come to any harm & if I can, to help you take the shortest route to feeling a lot better. Thyroid hormones are very much Goldilocks meds & as you know, T3 is very powerful, so it's crucial that we don't have too much or too little when every process in our body is affected by how close we can approximate the gland's production in perfect health. All the while our thyroid replacement is not the best it can be, nothing else, including our response to HRT, will be optimal & we will likely feel pretty rubbish as a result.
The other things I think it might be helpful to discuss with your doctors are changing to another method of oestradiol (patches, gel) if your next result is still below a likely therapeutic level & reducing your Tostran dosing frequency, or changing to a weaker testosterone product if your next T result is again too high. Please also make sure they know you have been feeling emotionally low. It can be difficult for others who've not been through the hypothyroid-menopause combination to grasp how terrible it can make us feel, so the clearer we can be about that the easier for them to help us.
I think it's absolutely admirable that you're thinking about how you can best exercise & tweak your diet at a time when you're so fragile. You deserve to feel a lot better & anything you can do to bring that about will be time & effort well spent.
You were in my thoughts when I woke in the small hours last night & will be again tonight. :hug:
Wx
-
Hi Wrensong,
Bless you, thanks for thinking of me.
It’s funny they never told me
What the cause of the hypothyroidism was when I was diagnosed. The endocrinologist tested for Thyroid peroxidase antibodies and were negative. But he also said some patients with hashimotos may have negative antibodies.
Please don’t worry about the personal questions. I have nothing to hide and any guidance you offer is all gratefully received :-)
Thanks for explaining the ranges and how it’s difficult to determine where I am in the journey. That all makes complete sense.
I absolutely will ask the testing preferences from my endo guy- (brilliant idea, thanks!)
It makes sense regarding the sprays and I have a list to take to the gP from your advice, thanks.
Re the diet and exercise, it’s barely happening but I’m desperate to find something that focuses me and keeps me going.
Thank you for everything xx
-
Hi Helly, if you're reading - just checking to see how you are.
Wx
-
Hi Wrensong, thanks for checking in. I’m still waiting for my gP appt sadly.
In terms of how I am, I go from being very down/sad/lonely/isolated to being ok and not much more. My appointment was moved so I have a few more weeks to go yet :-/
-
Oh Helly, what a pain you have a longer wait than expected. I am sorry. Do post about anything you want to, so you feel less alone with it. The women on here are wonderful for support. I've been in your situation in peri & remember so well how isolating it can feel. Also meant to say earlier, if you come to the forum with a thyroid query & there doesn't seem to be anyone with thyroid experience around, please feel free to PM me. I sometimes go many days without looking at the forum, but PMs usually (not always) come through to email so I'm less likely to miss you that way. I hope your OK days soon become good ones & that there will be many of them.
Wx
-
I've made my way here from another forum.
I'm finding it difficult to unpick what is thyroid and what is female hormones and I'm not sure what to do next.
A year ago I had female hormones tested. Results were:
Test. Range. Result. %through range
SHBG 23.4 - 128 88 62%
FSH 3.5 - 12.5 11.2 86%
LH 2.4 - 12.6 6.3 38%
Oestradiol 45.4 - 854 123 9%
Testosterone 0.29 - 1.67 0.78 35%
Free Androgen Index 0.2 - 7.1 0.9 10%
Prolactin 102 - 496 235 34%
I've had conflicting opinions on whether they're good or bad results.
Symptoms I have could be thyroid/low estrogen/peri and I don't know which way is up anymore!
I'd be grateful to hear some thoughts.
-
Following a slightly raised TSH level in January I have just had a repeat blood test and the TSH level is still slighty raised at 4.24 (ref level is 4.2). Previous result was 4.22. T4 level within range. GP is calling me on Tuesday to discuss result. I’ve not been tested for the autoimmune antibodies.
I do feel low , tired even after a goods night sleep, can feel shivery at times, have brittle nails, and a low resting pulse. Plus diagnosed with high BP in Jan. Could these all be linked to my thyroid ?
I guess my levels are not high enough to warrant treatment?
-
It might be worth asking for a referral to an endocrinologist as there a) may B waiting lists and b) many GPs don't push for any further tests if results 'are within normal limits' even when patients complain of on-going symptoms.
-
Wondering if anyone can advise on whether it's worth my further investigating thyroid, initially by re-testing bloods which I do privately though everything else I do on NHS (no GP to speak of, months for an appointment and most are incompetent).
I still haven't made the progress I'd hoped with HRT and some symptoms persist that make me wonder whether perhaps not strictly related to sex hormones but to thyroid issues.
These symptoms are chronic and acute fatigue, feeling terribly cold, especially in the evening, awful sleep, low mood. I think these are associated with hypothyroidism but my metabolism is fast and weight is very low - and struggling to increase it to no avail - which is associated with hyperthryoidism.
6 months ago bloods were as follows - these are all within the normal range but I wonder if anyone could tell me whether it's normal to have any autoimmune thryoid antibodies at all if there's nothing wrong?
TSH 1.37 mIU/L (Range: 0.27 - 4.2)
Free T3 3.4 pmol/L (Range: 3.1 - 6.8
Free Thyroxine 15.7 pmol/l (Range: 12 - 22)
Thyroglobulin Antibodies 15.3 IU/mL
Method used for Anti-Tg: Roche Modular
(Range: 0 - 115)
Thyroid Peroxidase Antibodies 10.0 IU/mL
-
Hi Elliebee,
I haven't read all your messages so I don't know all your medical history but just because you are "in the range" doesn't mean there isn't a thyroid issue! Has your GP checked for antibodies?
Wrensong is so much more thyroid-savvy than me, so she'll give you better advice! I have Hashimoto's disease and if my TSH goes above 3 (in the range!) I can barely stand!
You need TSH/T4/T3 and antibody tests before you can reach any conclusion about needing meds for your thyroid. And if there is evidence of antibodies then you need to get a thyroid ultrasound to see the "damage". That's what they do here, in France.
All the best.
-
Hi Keep on Swimming I’m being tested for antibodies on the 6 June. No mention of a scan though just regular blood checks if I have antibodies. Meds only given if above a certain TSH level? My TSH level is 4.24 ref. Level is 4.2.
Was 4.2 in Jan so it is increasing slowly. T4 in range. T3 not tested .
-
Hello ladies.
I wonder if I can pick your brains on behalf of a neighbour?
She was diagnosed with Hashimotos at the end of last year and has been prescribed Levothyroxine. She asked me if in general it is better to have a TSH reading at the low end of the normal range and a T4 reading at the high end? I said that I wasn't sure but I would let her know after consulting the experts ( by which I mean you lovely lot lol).
I know several women who are taking Levothyroxine and every now and then it comes up in conversation but I have never heard this general rule of thumb idea before.
Any comments or insights would be most welcome ladies.
Wishing you all well and take care.
K.
-
Hello - yes it is. However it can fluctuate. So blood tests in the morning around 8am-9am.
Don’t take your thyroxine before it.
Don’t take anything with biotin, a b vit, for around a week before (often in multi vits, collagen things and berrocca etc) as it can affect results.
Ideally lower range, tsh 1 or below. If it’s too low you can feel just as bad. There’s a sweet spot! You also need a little tsh I was told to help conversion.
T4 upper range, usually around 18-20.
However everyone is different. You need to trial a dose for a good 3 months to see if your feel ok (unless obviously hyper) as the half life of the thyroxine is 7-10 days. This is why tests are 8-12 weeks after a dose change.
Need to be aware that a test in the afternoon could show slightly higher results.
You can take alternate day doses of 125 and 150 or whatever you need. I’ve gone from that to 125 to 100/125 over the course of my hrt journey. There’s a 12.5 pill now as well.
I’ve discovered that the Utrogestan x2 100 daily i take and the testosterone has improved my ability to use thyroxine (utro lowers something that binds to it and testosterone increases t4/t3 ratios). Transdermal oestrogen hasn’t had an effect on me I don’t think.
-
Hello again ladies.
Clarella - thank you so much for your comments. I don't know what my neighbours actual levels are though I assume she has made a note of them. I will tell her that she was basically right about the levels to aim for and I am sure this will help her.
Thanks again and take care.
K.
-
Hi, I am having blood test next week for antibodies following an elevated TSH level but normal T4. Should T3 be tested too ?
-
Hi Elliebee, it's always helpful to know FT3 level if we are having symptoms of thyroid dysfunction, but if your tests are NHS I think they are unlikely to test T3 for you as this test is usually reserved for when there is a suspicion of hyperthyroidism, rather than hypothyroidism which an elevated TSH may indicate.
Wx
-
Thank you Wrensong . We’ve communicated before. My TSH only slightly elevated on 2 occasions. Will see what antibody test shows and decide then what to do.if antibodies GP said I’ll have regular blood tests. If antibodies not present then no further investigation- just one of those things with raised TSH. Not sure if referral to endocrinologist would be advised?
-
Always a difficult situation when TSH is only slightly raised. I see from an earlier post you do have some symptoms suggestive of an underactive thyroid, together with the slightly raised TSH . . .
I do feel low , tired even after a goods night sleep, can feel shivery at times, have brittle nails, and a low resting pulse. Plus diagnosed with high BP in Jan. Could these all be linked to my thyroid ?
If you feel there is no other explanation for your feeling under par & the next thyroid tests prove inconclusive, then it might be helpful to get an Endocrinologist's opinion if this is possible for you. You said, I think, your T4 is in range - could you post the result if you don't mind sharing, so we can see where in the range it is?
Wx
-
Hi Wrensong my T4 was 16 .1range is 11-22. TSh 4.24 ( range 0.27 to 4.2)
My B12, folate and ferritin whilst within range are on
Low side of normal and definitely not optimal. I’m having a B12 injection tomorrow (private healthcare).
-
Thanks Elliebee. You might feel better with a T4 closer to top of the range than that & your slightly raised TSH seems to suggest your pituitary is trying to get your thyroid to produce more, so the 2 do seem to tie up. Hopefully the thyroid antibody tests will throw more light on it.
Optimal levels of B group vitamins are important for normal thyroid function as I expect you know & low ferritin can also be an adverse factor. There is also an increased prevalence of B12 deficiency among hypothyroid individuals.
-
Thank you Wrensong so lower the TSH and raise T4 is the plan !
-
Please let us know how you get on if you have time.
Wx
-
I will do. Would you expect my levels to produce symptoms. Not sure if my symptoms are perimenopause , vit deficiency or thyroid!!!
Guess if I get vitamin and ferritin levels up it may help thyroid function ok.
-
Of course you're not sure - that's the difficulty at our stage of life when we are all feeling so unlike our former selves. Difficult to say for sure, but I think it is possible you could get symptoms of low thyroid if your current thyroid status is suboptimal for you as an individual. We don't know what your TFT looked like when you were asymptomatic - your T4 may well have been higher & your TSH quite a bit lower. If you have other classic symptoms of low thyroid such as sluggish digestion, fluid retention, loss of outer third of eyebrows . . . these would increase the likelihood I'd say.
Not sure whether your GP would want to prescribe thyroid meds while your T4 is still in range & your TSH only slightly raised, so you may need to see an endocrinologist if you want an opinion from someone with more in depth knowledge at this stage.
Wx
-
Evening,
Just wondered if anyone had any experience of having raised T4 but normal TSH. I have consistently had raised t4 with private tests . I did go to gp a few years ago and was referred to consultant who more or less said because tsh was normal no action was needed. I was discharged from consultant before I had chance to ask any questions , then covid happened so never got to persue it.
Just wondered if anyone else had experienced this ? Or whether this could be causing my symptoms rather than peri if that makes sense
-
Well I definitely have the antibodies! Level of 227 (range is 0-33). GP calling me on Tuesday.
-
Hi Spiderly13, I'm sorry you've had no answers to your post. I haven't been in your position of raised T4 with normal TSH, as I'm long term hypothyroid, but as our thyroid replacement dose requirement tends to lessen with age, I do know what it feels like to be on too much, leading to a raised T4 & symptoms of effectively being temporarily hyperthyroid. Do you have symptoms that you're thinking could indicate an overactive thyroid that are making it difficult to know whether everything you're experiencing is "just" down to perimenopause? If you'd like to post your TFT results with ref ranges & any symptoms you're concerned about, that will help us to get an idea of what might be going on. I'm not on the forum much at the mo as have had a bit going on past couple of months, but we have quite a few members with experience of thyroid disease, so hopefully one of us will be able to help if you don't mind giving a bit more info. You could also PM me if you get no response, but not all PMs are coming through to email for some reason, so I'm finding I'm unaware until I log on that messages are waiting.
Wx
-
Hi again Ellibee, sorry to know you do have raised antibodies, but that might mean you get onto a treatment path that could result in better health for the long term. Please let us know how you get on today with your GP appointment.
Wx
-
Hi Wrensong GP said as TSH only slightly elevated and T4 in normal range along with mild symptoms she doesn’t feel medication is necessary yet. Will check levels in 12 months or sooner if my symptoms worsen.
-
Thanks for the update Elliebee. How do you feel about the outcome?
Wx
-
Hi Wrensong at the moment I am ok with the decision as my symptoms are mild. I feel better since my B12 injection and taking iron and vit b supplements. Of course if I start to feel worse I will request a further blood test.
My antibodies were 227 (0-33 is normal). So not sure if that is a really high level? Also I think just because I have the antibodies it doesn’t mean I will develop full blown hypothyroidism?
-
Hi Spiderly13, I'm sorry you've had no answers to your post. I haven't been in your position of raised T4 with normal TSH, as I'm long term hypothyroid, but as our thyroid replacement dose requirement tends to lessen with age, I do know what it feels like to be on too much, leading to a raised T4 & symptoms of effectively being temporarily hyperthyroid. Do you have symptoms that you're thinking could indicate an overactive thyroid that are making it difficult to know whether everything you're experiencing is "just" down to perimenopause? If you'd like to post your TFT results with ref ranges & any symptoms you're concerned about, that will help us to get an idea of what might be going on. I'm not on the forum much at the mo as have had a bit going on past couple of months, but we have quite a few members with experience of thyroid disease, so hopefully one of us will be able to help if you don't mind giving a bit more info. You could also PM me if you get no response, but not all PMs are coming through to email for some reason, so I'm finding I'm unaware until I log on that messages are waiting.
Wx
Thank you so much for your reply ….. the symptoms I experience are :-
Anxiety
Fast heart rate
Raynaulds
Weight Loss
Hot flashes
Test Results :
TSH (0.27- 4.2) T4 (12-22)
1.54 24.5
1.23 23.9
1.16 21.6
0.8 27.8
2.13 28.7
1.8 27.9
2.35 30.5
Went to gp after first test and they did bloods but T4 was in range on there tests so referred to specialist , they did do some tests but as it was years ago can’t remember what all of them were to be honest ! I’m just unsure whether to look into it again further or just conclude I’m one of those people who is consistently out of range for no reason !!
Thanks again for any advice anyone can offer
-
Elliebee, that's really good that you feel better for the B12, iron & B group. I think your intention to leave things as they are for now is sensible, flagging up any changes that concern you. Do make sure not to take B vits containing biotin in the few days before any future TFT though, as this can skew the results, as I think has been mentioned already on this thread.
Yes, it is possible to have thyroid antibodies without progressing to thyroid dysfunction of a degree that requires treatment.
I think at the point my thyroid condition was diagnosed my antibodies were in the high hundreds, but can't be sure as it was nearly 30 years ago. I wasn't given the results though I recall the requesting Consultant who went on to do my thyroidectomy remarking on how high they were.
-
Hi Spiderly13, thanks so much for posting with more info. What a difficult situation for you :-\ Your TSH has always been unequivocally within range as you say, yet all but one FT4 are above range & the in range one was also near the top. It's true that some people's results in good health fall naturally outside the ref range, but with those symptoms at perimenopause it's so difficult to be sure what's going on.
Though I also had marked weight loss, taking my weight way too low in peri, this, together with your consistently raised FT4 does make me wonder what's going on. The anxiety, hot flushes & raised heart rate can be due to peri or thyroid dysfunction as I'm sure you know. If your heart rate is consistently raised though, rather than just in short episodes, that would also make me more inclined to think about thyroid as possible cause. I also have Raynaud's btw & had all the other symptoms you mentioned & more throughout peri so I know these don't come without worry at this stage of life when there's a nagging question over possible dodgy thyroid involvement.
Can I ask is your weight too low, or have you just lost a bit? Also do you have any other medical conditions & are you on any supplements or medications, inc HRT?
The normal TSH with raised T4 is unusual & I'm afraid I can't find much research that gives helpful insight. The links are to articles from a Clinical Endocrinology journal & GP Notebook, but the former is complex & I've struggled to make headway with it. The relevant section in the GP Notebook article is headed "normal or raised TSH, raised free thyroid hormones".
I have not copied out extracts, as you may prefer not to read the detail if you are happy with your doctor's guidance.
Clinical Endocrinology
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2265.2011.04023.x
GP notebook
https://gpnotebook.com/simplepage.cfm?ID=-1080426419&linkID=63475
Can I ask do you know whether you have thyroid antibodies & has anyone tested your FT3?
In your position, if it's some years since you saw an Endocrinologist, I think I'd want further expert advice at this stage, but if your GP doesn't think it necessary & you are happy as you are for now you could watch & wait.
Sorry, this doesn't feel like any help at all but I do feel for you.
Wx
-
Bumped for klf68.