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[Furyan]

I'm doing pretty rubbish at the moment 

I did great on T4 for about a week, with my symptoms all hugely improved and sleep being possible again. And now it all is getting bad again. So my guess is I am converting the T4 I'm taking into rT3 again. (This was my original problem, with my own T4, so it makes sense I would do this.) I don't think the doctor wanted to just put me on high doses of T3 only without at least trying me on T4 and T3....

The problem is my next bloods are start of January and then it will take about a month to get the results back because the rT3 has to go to the US to be processed. So my next appt isn't until the start of Feb, which seems frigging ages away.

I really think I need T3 only - and a normal dosage of it. She only gave me a micro dosage originally and then freaked when it took my T4 to nothing and put me on T4 as well. When really I just needed much more T3... But unless I want to go all cowboy with this and order myself T3 from Mexico(!!!) I have to jump through the hoops and show her what it's doing with my bloods. Sob.   

Furyan, Dr Conway will prescribe NDT if you want/need that. Or T3 and T4. Or T3 only. Whatever works for the individual.

So sorry to hear it’s gone downhill again Joziel. Your gut feeling is probably right that you do need T3 but what else can we do when waiting so long for an appointment? It doesn’t seem that long but it IS when battling with thyroid problems like this. How come you feel like you have to jump through hoops to show her your need for T3? I know many people do order their own (like me!) but it’s not something I could recommend if you’re already being monitored because there could be other things going on. I have done it in the past and currently with NDT because these thyroid crashes leave me desperate for the energy to function for just basic daily routines so I understand where you’re at. Sending positive vibes and prayers to you too! X

[Furyan]

Glad you are finding Cyclogest tolerable Furyan, does the lower dose give you adequate lining protection or have you started it too recently to have been scanned yet?? 

I think you're right to prioritise getting your thyroid optimised as it's fundamental to our wellbeing & yes our ability to get the most from HRT will be compromised if any thyroid condition we have is not well managed.

It’s a pity you can’t tolerate progesterone well, a thyroid enhancer by all accounts.

I think that may have been part of the problem for me - the fact that it boosts thyroid status, as I felt horribly hyper on Utrogestan.

Can I just ask - how come you changed from NDT to T4/T3 combined?

We never managed to get me feeling at all well on NDT, but it was in the early years of peri when I was really struggling with overwhelming menopause symptoms.  My current endocrinologist doesn't prescribe NDT but that's fine by me as I seem to get on better with Liothyronine & Thyroxine.  There's also the issue that although the NHS would far rather none of us needed any T3 containing medication, Liothyronine is less controversial than NDT & I'm lucky that my need for it is established so that I get it prescribed on the NHS.  Still have to get levels tested privately though, as the NHS won't usually monitor blood levels of T3 even for those of us they accept need it.  One of my TFTs earlier this year showed my T3 to be well below 3 (on T3 replacement), so that I have probs converting Thyroxine is not really disputable!  Tbh I'd far rather not need any controversial meds, thyroid or HRT, as we can all do without any obstacles to our health needs & repeatedly coming up against them & having to argue our case can be extremely stressful & tiresome.
Wx

Ah that makes sense Wrensong - I mean, if your current thyroid regime works, why mess with it? I’m interested to see what said doctor will suggest when my bloods are done in January, by which time I’ll likely be hitting just over 3 grains of NDT. I’m also curious what that dose will do to my T4 level. Either way, I know my body is craving T3 as I naturally have high energy needs. I look forward to each raise! Perhaps I should have been offered combined T3 and low T4 from the outset when I was first diagnosed because the NHS endos grudgingly diagnosed me given my thyroid profile at the time. I’d consider it instead of NDT so long as they don’t mess with my T3!

[Furyan]

Glad you are finding Cyclogest tolerable Furyan, does the lower dose give you adequate lining protection or have you started it too recently to have been scanned yet?? 

Had a scan in August which showed healthy lining of 3.3cm. And that would have been based on taking Utrogestan every other day vaginally the previous year, which equates to around 50mg daily. I figured this dose of Cyclogest should be ok, but I’m prepared to go for 6 monthly scans if need be just to be on the safe side.

[Furyan]

Floral, your prayers are appreciated! It’s so difficult balancing thyroid and HRT isn’t it? I’ve had pretty dark times mood wise recently as I’m missing my normal life -have had to delve deep to reach my faith as I’ve been forced to let the things that I enjoy go for the time being. Interesting what you say about the vaccine - I had it March 22 and symptoms that I now know were thyroid related began. In my case, lots of factors conspired to cause this crash, thankfully I’m now aware of lots of them so making lifestyle adjustments accordingly. I just need to find a way to manage the low energy and fatigue while I’m building up to my sweet spot - I was given the heads up on another forum that I won’t be symptom free until then.,.

Re: low FT3, all it takes is for that to be lower than optimal for us to be hypothyroid regardless of what TSH and FT4 are. There are lots of (particularly) women who report this…
« Last Edit: November 27, 2023, 08:16:44 PM by Furyan »

Hi Furyan,
I am well post menopause and I had wondered why in earth i was having all these symptoms and now I’m thinking that the thyroid is involved. 
I have tried to increase estrogen and felt ten times worse!!
I understand totally how you feel re missing out on normal life, it will come back again once we get sorted.
Also when I had the crash 3 months ago, I experienced the most excruciating dark lows, and zero motivation which for me was very abnormal, I had a difficult peri/meno but this was off the charts.  I had to resort to couch for weeks.  One symptom I struggle with is my body not  feeling relaxed like it used to, it must be adrenaline or? due to low T3??  I have read this can be a symptom of hypo too.
You are right to see a specialist to be guided, it’s far too much for us to sort on our own.  I paid privately to see an Endo short time ago and because TSH and T4 were ok he dismissed me but I’m learning that this is common.  Thyroid treatment and diagnosis needs to be given an overhaul.
I may have apt with same specialist as you G. C?  Best wishes going forward x

Same to you Floral - about going forward with this, which we will! It’s a horrendous time feeling low with thyroid stuff, which only compounds the HRT problem. Incidentally, I wonder if, by taking the high dose of oestrogen you mentioned, this negatively impacted your thyroid? Too high oestrogen can do that. If only there were more ‘experts’ available for us to check these things out because the waiting game can also be a nightmare when you’re suffering. And the way thyroid issues are traditionally dealt with by the medical profession is often as ghastly as the condition itself.

Like I say - we’ll get there. Thankful for sharing ideas here as well as the encouragement and understanding. xx

[joziel]

There is definitely an interaction between estrogen and thyroid stuff which I think deserves to be explored and trumpeted way more.... There are undoubtedly many other women like us out there who haven't yet figured out the thyroid involvement and are just suffering. When I understand what the heck is going on, I might contact Louise Newson and ask to go on her podcast    just to get the word out more.

For me, this all began only when I started HRT. I'd had the cold feet and slow metabolism, constipation, dry skin for years and years before - but I just thought that was me and got on with life, given my TSH and free T4 was always normal and doctors didn't seem bothered. I was on the desogestrel POP for 10 years which kept all my hormones quite low. (To suppress endo.)

Then I came off the POP and started HRT and after 3 weeks, I got all these terrible nighttime symptoms I'm still battling. And they seemed to get more intense with each dose increase, so I ended up in A&E when I went to 75 for the first time. Of course at first I thought it was the HRT and the estrogen and I spent ages carving up patches and slowly slowly raising things... to no avail. I even stopped it totally for 5 months, thinking I'd get back to how I was before, then - but nope, that wasn't happening either - I just got low estrogen symptoms as well(!). So I went back on it again and this time things didn't get any worse when I increased. I actually seem to absorb it very poorly so need quite a high dose to get a decent amount (now on 5 pumps of gel).

But I faffed around with all that for sooooo long. Then I did B12 shots every other day, buying them online from a German pharmacy and self-injecting at home just to rule out B12 deficiency. I checked folate and D3 (fine). I had an iron infusion in February as I couldn't get ferritin over 62 orally. (Now it's 211 and I still have these symptoms.)

Which is all to say, whilst it began after starting HRT, I now believe it was the HRT (estrogen) and thyroid interaction which caused all this. My thyroid was struggling and only just getting by and adding estrogen in and it couldn't manage....

[Furyan]

I did what you did Joziel -since March 22 going on HRT following a thyroid crash, actually thinking the crash was due to my need for HRT! Over the past year, been faffing with oestrogen doses and completely baffled by rapid weight gain and fluid retention etc. whatever dose I used. Fast forward to another crash in September and seeing my thyroid results from the A&E admission - it was very clear to me what the main issue was all along. To think, this wasn’t helped by my GP telling me to reduce my thyroid meds because he thought I was hyperthyroid! (my TSH has been suppressed since taking any form of thyroxine). It’s frustrating because I think it’s about high time that medical professionals actually LISTENED to their patient’s lived experiences rather than dogmatically follow numbers from a lab (which differ up and down the country anyway!). Having said that, there are some who genuinely do what they can to help and understand - the person behind the setting up of this forum for example. I do trust (not just for me) that once our thyroids are at least stable, this will give the foundation needed to tweak HRT to a level that’s optimal.

[joziel]

Totally. I'm also really aghast that GPs are just using TSH and (if you're lucky) free T4 levels to try to dose people, and then only giving them levo/T4 and no T3. I'm in a lot of thyroid FB groups and there are so many people suffering, this is really scandalous.

I'm doing better again now. I wonder if what happened is that I started the levo and my body was a bit 'hurrah, this is what we need' and I had an immediate good reaction to it - but of course it's not going to be enough right away and takes up to 6 weeks to be maximally effective, so then I crashed a bit again with symptoms coming back. But now I've been on it about 3 weeks and the last 3-4 nights have been good. Not perfect or symptom-free but much better, with much lighter symptoms - I can actually sleep about 5-6 hours of good quality sleep. So unless this all gets worse again, I'm going to stick with what I'm on now until bloods are done in January... at least this will all be useful information for the future. (What I'm doing with levo/T4 and whether I'm able to convert it.)

I'd like to try NDT if we confirm for sure that thyroid stuff is what I need, because then I get T1, T2 and calcitonin as well and no synthetic fillers....

Does anyone know if we can take levo along with utrogestan orally at night?? Just because I have a high calcium breakfast so ideally should take my levo 4 hours before that, so it would be better for me to take it at night...

[Wrensong]

Floral

Have not tried progesterone other in mirena and was tried on a contraceptive pill one time which both had dire consequences!  I have history of pmdd/pmt and postnatal so not sure if that rules prog out even more?

Progesterone probably best avoided then.

I’m thinking I might try lower dose though I’m getting hot flushes again since switching from oral to patch and have night sweats too….cud this be too much?

Do you know what your oestradiol level was on oral before you switched to patches & how long is it since you changed from one to the other?  Sorry if you've told us this already, it's a few days since I was on here & haven't reread the thread to refresh my memory.
Wx

[Wrensong]

Furyan

I look forward to each raise!

Sounds as though the NDT suits you well.

Had a scan in August which showed healthy lining of 3.3cm.

I'd say v sensible to scan to see how the change to Cyclogest affects the measurement & like you, I think I'd want to repeat at 6 months initially.
Wx

[Wrensong]

Joziel

now I've been on it about 3 weeks and the last 3-4 nights have been good. Not perfect or symptom-free but much better, with much lighter symptoms . . . So unless this all gets worse again, I'm going to stick with what I'm on now until bloods are done in January

Good to hear you've had some better nights & that that leaves you feeling you can stick to the plan agreed with your doctor.
Wx

[AmandaJR]

Morning ladies, hope it’s ok to jump on this thread.

Last Wednesday I had a GP apt as I’ve been having headaches, nausea and feeling starving for a month, no vomiting and paracetamol stops headache so not serious. Bloods were taken and on Thursday I got all normal results apart from these:

TSH 0.118. range (0.34-5.6)
T4 <2. Range (7.7-15.1)
T3 11.6. Range (4.3-6.8 )

GP spoke to Endocrinology dept at the hospital who told him to refer me for thyroid scan this week and to stop all HRT until they see me.

I really don’t want to stop HRT and risk going back to the peri nightmare. I haven’t stopped the 4 pumps of Oestrogel and Utrogestan. Has anybody been advised to stop HRT please?

Thanks.

[Wrensong]

Hello AmandaJR, I'm sorry you have this new worry.  Your TFT is pretty unusual looking, so can I ask please are you on any sort of thyroid medication or meds for any other condition apart from HRT?  I completely understand your feelings about stopping HRT & can only suggest you ring the Endocrinology dept & ask to speak to the secretary of the clinician whose advice this was, explain your predicament & ask whether it is essential that you stop HRT immediately.
Wx

[AmandaJR]

Thanks Wrensong. I’ve just received the scan referral letter so have the department contact details, I’ve left a message asking for a call back.
I’m not on any medication other than HRT. I’m hoping the scan will happen quickly so that peri symtoms don’t kick in if I really have to stop taking the HRT.

Thank you for helping.x

[Wrensong]

No problem Amanda.  That you are not on any other meds is helpful to know, thank you.  Yes, let's hope the scan happens quickly & you get the answers you need.  Please let us know how you get on.
Wx

[Floral]

Hi Wrensong and thanks. 
I changed to patches about 3 months ago, I’m on 75mcg, estrogen only I am post meno total hyster age 62, my E level just over 200.  On 2mg tablet it was about 470 but it increased SHBG.  I think it’s my thyroid, my FT3 low for some reason and I’m waiting on a specialist apt for that.  I tried increasing patch to 100 and I was on overdrive and very tearful.  I feel my body is out of balance.  I still have night sweats and racing heart on patch and also had these on tablet.  I now have  hot flushes in the evenings.  It is so consuming not to feel well and no energy.  I think my thyroid has been declining since covid, could it be that if I increase estrogen it affects the thyroid more?  I’m not on any T meds yet.  Tk you!