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[Wrensong]

Ah, you're postmeno too Furyan.  Should be easier for us to manage the 2 together at this stage (I'm a decade+ postmeno) than it is for women in peri.  I found cyclical HRT postmenopause on T4 & T3 much more difficult to manage than continuous, but had to go to cyclical as I became increasingly progesterone intolerant.
Wx

[Furyan]

Ah, you're postmeno too Furyan.  Should be easier for us to manage the 2 together at this stage (I'm a decade+ postmeno) than it is for women in peri.  I found cyclical HRT postmenopause on T4 & T3 much more difficult to manage than continuous, but had to go to cyclical as I became increasingly progesterone intolerant.
Wx

I can’t tolerate the typically recommended doses of progesterone (100 or 200mg daily) for the oestrogen I use (currently just over 2 pumps). That’s why I use Cyclogest so I can cut the pessary into 60-75mg doses that I manage much better. I know this forum is mostly aimed at balancing our sex hormones but this last year and recent crash taught me that absolutely nothing will settle until my thyroid is more balanced. I figured that tweaking HRT (especially any increase) at this stage won’t allow me to feel the effects of NDT dosing as well, so I’m putting up with those remaining meno symptoms until such time! Kinda hoping that thyroid balance will bring better sex hormone balance. It’s a pity you can’t tolerate progesterone well, a thyroid enhancer by all accounts. Can I just ask - how come you changed from NDT to T4/T3 combined? Asking because I’m booked to see the same person some of you mentioned here and suspecting it’s something that I may have to consider depending on what my bloods show from being on NDT.

[joziel]

I'm doing pretty rubbish at the moment 

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

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.

[Wrensong]

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

[Floral]

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

[Floral]

Joziel, I’m so sorry to read your post today, such a nightmare and the waiting!
Do you think it would be ok to be on higher T3.  How did YOU actually feel after initially going on the T3, were you improving but for blood results?
I rang Meg today and she said I didn’t need to do RT3 at this stage🤷‍♀️

[Wrensong]

Joziel

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

How difficult for you.  I wish I knew how to help, but the use of thyroid hormones in patients whose health probs don't stem from a disease of the thyroid gland itself is beyond my experience.  If the doctor you see is the one you recommended to Floral I see she's a mainstream medic & has experienced hypothyroidism herself, both reassuring, so I really hope she can sort this out for you.
Wx

[joziel]

It remains to be seen if it's a disease of the thyroid gland or not really. At some point, a conversion problem is a disease of the thyroid gland if there is no reason for it...Certainly my doctor thinks I am hypothyroid based on my last bloods with a very low T4 and that this is the 'real' problem which my previous results were just masking. However, there are people who are poor converters and just turn all T4 into rT3 and I worry I'm one of these. But I can't diagnose myself after just 2 weeks of T4 - maybe it will all get better. Perhaps it is still building up in my system and I just had an initial spurt when I started on it.

And yes, Dr Conway is who I've recommended. I probably should stop recommending her because she's getting busier and busier and it's getting harder to see her    She's an NHS GP half the week and runs her private practice thyroid clinic the other half.

Floral, you can still do rT3 if you want to and if you're just waiting around it might be a good time to do it. They told me I didn't need to do rT3 again this time, but I'm very glad I am - or I'd have no way of knowing if I'm converting the T4 they just put me on, into rT3. So I insisted on testing it again. If I'm converting okay, I won't test it next time...

[Floral]

Wrengsong thank you.  It’s a tough one knowing what’s causing what!
I am 62 I am on 75 patch Estrogen only, bloods 208, I get racing heart in the mornings wakening me up and sweats but when I try to increase Estrogen, I feel awful.  Also have this unease in my body which is def physiological, Anyone any ideas?  I am thinking it’s thyroid at the root.

[joziel]

Floral, you could be writing what I'm feeling there. I often wake up with a heart beating hard and faster than usual, it wakes me from sleep. Sometimes in the night, sometimes in the morning. And there is an unease like a very low electrical current which makes it hard to relax and sleep. The only thing which impacts these symptoms, is thyroid meds. I've done all kinds of shenanigans with estrogen and progesterone and T, to no avail.....

[Wrensong]

It remains to be seen if it's a disease of the thyroid gland or not really. At some point, a conversion problem is a disease of the thyroid gland if there is no reason for it

Sorry Joziel, don't get me wrong - what I meant was that you've said you've always had normal TFT results (rT3 aside, which is not yet routinely measured, though who knows, that may change) with no raised antibodies & thankfully you haven't been diagnosed as having disease in the thyroid gland itself.  I'm not disputing your rT3 results or that you have been feeling very unwell & I agree that thyroid hormone conversion problems can be problematical for health.  That's why a small subset of hypo patients are put on T3.  I just don't know how to help in your circumstances is all I meant.   It must be distressing & frustrating for you, but if you feel on the same wavelength as your doctor, that's half the battle.  She is conventionally trained so her qualifications are good.  The trial & error & waiting between meds changes for test results are hard to bear I know.
Wx

[joziel]

Yes, I know what you mean Wrensong. But I think it's not so clearcut when there is/isn't a thyroid problem. I did have low T3, which another doctor said would be a problem even without the rT3 result, for eg.

Sometimes there aren't obvious or clearcut divisions between 'ok' and 'not ok' on thyroid results and it can all be a bit of an art form. Dr Conway said sometimes our bodies 'mask' what's really going on because they are trying to keep everything stable as much as they can, so results can be difficult to interpret by regular GPs. (Even if they actually tested for everything, which they don't.)

For sure, I've had some of these symptoms the best part of 10 years (cold feet, taking hours before I can get to sleep waiting for feet to warm up!), slow metabolism (eating ridiculously little), constipation.... But I just thought all that was 'me'. My thyroid has been a problem for a very long time, whatever the results have been. After my very first T4 dose, my feet were warm and I didn't need the electric blanket - unfortunately this hasn't continued and after a week I'm back to cold feet and everything else, but the fact that the thyroid meds influence and affect these specific symptoms I have, is enough evidence to me that it's thyroid... I think I need a normal/decent dose of T3 without any T4. Whether I can stop that at some future point and function normally without it, I don't know. I could try. But first steps first... I kinda feel like I'm now taking something which is making me worse (T4) but I don't think - after just 2 weeks - the doctor will approve me stopping it and raising T3(!).

[Wrensong]

Joziel

Sometimes there aren't obvious or clearcut divisions between 'ok' and 'not ok' on thyroid results and it can all be a bit of an art form.

After nearly 3 decades on thyroid replacement I couldn't agree more, that's why it's so important to take symptoms into consideration as well as results.

results can be difficult to interpret by regular GPs. (Even if they actually tested for everything, which they don't.)

I agree, but NHS GPs are in a difficult position, being constrained by questionable guidelines on prescribing & testing for thyroid conditions, which in effect can be the patient's tragedy, especially for those who aren't able to persuade a GP to do an Endocrinology referral & don't have the means to go private.  I feel very strongly that the complexity of thyroid conditions & the misery they can cause when not well managed are not widely recognised.  Add another poorly understood, interacting condition into the mix - menopause - & women can have a helluva time of it trying to get the right help to achieve anything like acceptable QOL.
Wx

[Wrensong]

Wrengsong thank you.  It’s a tough one knowing what’s causing what!

Yes, Floral I absolutely agree. 

I am 62 I am on 75 patch Estrogen only, bloods 208, I get racing heart in the mornings wakening me up and sweats but when I try to increase Estrogen, I feel awful.

Remind me, did they take your ovaries on hysterectomy?  Can you describe in what way increasing oestrogen makes you feel worse?  In that case have you tried a lower dose patch in case 75 is too much for you at this age?  Your serum level of 208 is not high  but some women feel better on less as they age & women who've had BSO (me included) seem to have a particularly hard time of it optimising HRT.  My gynae has advised aiming for oestradiol of 300+ but like you, I feel worse on higher doses.  Have you tried testosterone?  Some women on here report feeling better for adding progesterone after hysterectomy with BSO, though this is not usually thought necessary.  Have you ever taken progesterone (before hysterectomy) to know how that makes you feel?  Some women find it calming & that it complements the effects of the oestrogen in their HRT.  Not me though - my body hates the stuff!  Sorry so many questions.
Wx

[Floral]

Wrensong, total hyster.  Have not tried progesterone other in mirena and was tried on a contraceptive pill one time which both had dire consequences!
I have history of pmdd/pmt and postnatal so not sure if that rules prog out even more?
I’m thinking I might try lower dose though I’m getting hot flushes again since switching from oral to patch and have night sweats too….cud this be too much?
I feel my body is trying to regulate if that makes sense.  Thank you for kindly replying