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[joziel]

I think it's all useful to everyone because thyroid stuff is complicated and the more you read about different people's circumstances, the more you come to understand it really. Not that I understand what is going on with me...

I can't do the quote-y thing Wrensong... Will do this instead:

"I imagine your low T4 results were due to your supplementing with T3, as with more active thyroid hormone in the body there would be less call for your thyroid gland to produce T4.  "

One way or another, the low T4 results were due to the T3 - but whether the T3 supplementation has 'caused' them or uncovered the real issue, is the question. Because I wasn't given enough T3 to be sufficient by itself. The doctor didn't want to put me on a full dose of T3 - because the idea was to boost what my body was doing and to clear the high rT3 - rather than to replace what my body was doing. The worry about giving me a full dose of it is that I could just end up on thyroid meds ongoing, when (if it were a conversion problem) I didn't really need that. There are other sources online where people with high rT3 and conversion problems are given T3 to clear the rT3 - but they are given regular doses of it, not the micro dose I was given. (See the last few sentences here: https://neuroendocrinology.org/what-is-the-reverse-t3-syndrome/ ) And why my T4 then plummeted despite my body needing more T3, I've no idea.

"Can I ask what your TSH was at the time of the TFT that showed the low T4?  "

Normal, always normal TSH. That time it was 1.15. (The highest it's been was 3.4, that was before any medication.)

"Did the endocrinologist comment on the reduction in your rT3?  "

Yes, we are happy about that - the T3 brought down the rT3 as planned, from 33 to 15. It should really be lower than that, but 15 is borderline okay. I am re-testing rT3 in January, even though it takes ages to get the results back for that and has to be a venous draw. Because now I'm taking T4/levo, I want to check I'm not just going to convert that to rT3 again(!).

"but if you don't have raised thyroid antibodies (sorry, can't remember for sure) that shouldn't apply to you.  "

I don't have raised antibodies, they've always been very safely low.

In case I don't convert T4 to T3, we've kept the T3 dose the same for now. (Seeing that was the original problem.) If I'm converting it, I think I'll get what I can from T4 and just top up a little with T3. Although the doctor says that NDT is the best choice for the majority of people so I might end up switching and trying that. The T3 is ridiculously expensive, it's about £250 for 2-3 months supply. Compared to £17 for levo!! I'm definitely not feeling over-treated yet but it can take some weeks for that kind of thing to happen...

Whatever the heck is going on, I'm now convinced this is totally thyroid and not estrogen-related. Well, estrogen did play a role in causing this: I think my thyroid has been struggling for years as that's how long my cold feet and hands, slow metabolism, constipation, and putting weight on whilst eating ridiculously little has been going on. (I'm not overweight, but that's because I'm so stubborn and would just fast if I gained weight. In the long run, this has made everything worse for the reasons outlined here. But it was the only way to not gain weight, when you're basically eating an apple a day or something and still gaining weight...). So - all that has been going on for many years. But I just thought it was just 'me' and that's how I was. (Dur.) And any tests at the doctors where they would only test TSH and Free T4 were always fine....

Then I hit peri-menopause and started estrogen, testosterone and progesterone - and my poor thyroid couldn't deal with the increased metabolic demands of all that. (I'd been on desogestrel for 10 years due to endo, which had kept all my hormones low.) And that's when I got the symptoms and crashed. So - HRT played a role here, but it wasn't really the cause of it. I'm pretty sure that's what's going on. The only thing which has had any impact on my symptoms, is thyroid meds. Taking T3 originally and now, adding in the T4 as well. It's not all perfect yet, but it's SO MUCH better. I think in itself, that is proof that what I have going on, is thyroid.

[Furyan]

Hi Furyan, I'm sorry to be so late replying.  Was away from the forum for a while & just trying to catch up.  I'm so glad you're aware of the low carb dangers as regards thyroid function.  How are you doing now?

Btw, I read somewhere that the NHS are trying to stop prescribing T3 because the costs rocketed. They’re even trying to get existing patients to go onto T4 monotherapy. Is this true? I’m just wondering if your regime might be something to consider in the future if sourcing NDT gets too costly… x 

There was widescale withdrawal of T3 prescribing by the NHS from around 2018 because as you say, the price went stratospheric with a monopoly on production/supply.  I was lucky to get mine reinstated because my Endocrinologist intervened with the CCG informing them I met the criteria for continued prescribing, but yes many patients were put back onto T4 monotherapy.  The pharma company involved was later heavily fined for the price hikes, in 2021 I think.  The price of T3 has since been reduced & the monopoly has thankfully ended, with a number of brands back on the market.  It's still expensive compared to Thyroxine, but for those of us who can't convert Thyroxine well enough it's essential.
Wx

Hi Wrensong, thanks for asking. It’s a mixed bag atm as I’m trying to get the HRT steady and continuous whilst finding my optimal thyroxine dose! I split my NDT to morning and early evening but since I increased the dose last week (only by 1/2 grain) I’ve noticed faster heart rate after the second dose when trying to fall asleep. Tonight is worse as I’m feeling a bit warmer too and taking ages to fall asleep. Reason I’m confused is because I don’t know whether this is because I’m now taking too much NDT or just taking the second dose too late. Maybe I should take it in the afternoon? Tonight is more confusing because I foolishly increased my progesterone due to slight spotting during the day.

Btw, I can’t remember which of you mentioned a thyroid doctor here, but I’ve booked to see her in the new year. Had enough of trying to balance HRT and thyroid like this, it’s way too complicated and anxiety-provoking to do alone. This doctor seems to know more about the thyroid than others and it’s a bonus that she knows about HRT too. The appointment couldn’t come soon enough…

[Floral]

Hi ladies,  Good golly gumdrops😬 thyroid or menopause?  aren’t we so lucky to be landed in the valley of hormones😫

Wrengsong abs no need to mention posting as I’m learning from others.  We are all unique and may have to trial stuff to get to a good place. 

Joziel & Furyan I am sorry to hear of how difficult thyroid issues are for u both and really pray you both get sorted soon.  Menopause is enough on its own!!

My issue really kicked off after covid vaccine, and then covid virus - total hell, my whole system got mucked up, I would begin to feel better and then crash again and this has been a pattern and each crash has created more fatigue along with hair loss, freezing feet, dizzy spells, low blood sugar symptoms, low mood sometimes extreme, anxiety, palpitations and sweats, low stomach acid, low digestive enzymes, low appetite, mood swings and more, I have never been affected as badly in all my years of going through meno SO I do think my thyroid is not working properly. 

Joziel your thyroid issue mirrors mine - tests look ok but for low T3, how long ago since you developed real issues?   I was in touch with P. R (uk author) not sure if allowed to name?  on thyroid especially T3 and he said even though my TSH & T4 etc were ok, because my FT3 is very low and I’m symptomatic then it’s hypo and I’d need T3 in some form.  I did see on a utube video that few things can cause conversion probs one being a vaccine, virus, others were inflammation, gut issues list goes on…..abs pain in the rear!!

I am not sure what my answer will be but I need a life again🙏🏻 my apt with Dr C is not until beg of Feb.  This recent crash left me on sofa for 10 weeks.

Please post ladies it helps others.

[joziel]

Yes I think there are some similarities with our results Floral. My first results in detail (before any thyroid meds) were:

TSH 1.37
Free T3 3.9 (3.1-6.
Free T4 18.6 (12-22)
rT3 32 (8-31)

That lowish T3, combined with the high rT3, is what made us suspect a conversion problem - given T4 seemed good. I haven't had Covid. I had just the first 2 AZ vaccines but that was a good almost-year before all this started. I have very good ferritin levels now (211) after an infusion in February, to rule out iron deficiency. My cortisol was very normal on the 4-point saliva test.

After those results I was given 5mcg of T3, 3x a day. My advice to you would be: Make sure you are not left on this baby dose of T3 for ages, like I was. Things were much better at first and then it all went pear-shaped and next bloods - after 9wks of that T3 were:

TSH 1.15
Free T3 4.3 (3.1 - 6.
Free T4 9.7 (12-22) LOW
Total T4 54 (59-154) LOW
Thyroglobulin antibodies 14.9 (0-115)
Thyroid Peroxidase Antibodies 12.8 (0-34)
rT3 15 (8-31)

After that I was given levo/T4 50mcg, on top of the T3. I am doing much better after 3 weeks on that. I still wake frequently during the night and sometimes startle a bit before falling asleep. And I still have the symptoms but they are much less (heart beats less fast, less often, tremor is much more faint and easier to sleep through, feet less cold etc). So I feel like I'm finally on the right path but it's going to take some experimentation.

I'm also going to increase my Oestrogel to 6 pumps as I was only at 283pmol with 4 pumps and I want to get up to 400-600pmol just incase that's a factor...

Why is your appt not until February? Is that what the online appointment calendar shows? It's worth re-checking that because there are cancellations that come up and also they make more dates available sometimes. It's also worth getting the rT3 done, because they send that to the US to be processed and it takes 14 working days to get the results back - about 3 calendar weeks. And you need to have that result before your appointment with Dr Conway. It all gets much easier if you don't need rT3 as you can do a finger **** test and get results back in 2 days instead of organising venous draws and waiting 3 weeks...

What I've learnt from all this is that interpreting thyroid stuff seems to be more of an art form and an experienced-hunch kind of a thing than a science really(!!!). I'm convinced there are many other women out there around this time of life struggling with undiagnosed thyroid stuff just because the doctors they see don't understand this or run enough tests to reveal it all. They get stuck in menopause forums and groups, thinking it's all menopause. But whilst that could be a factor (see my situation where it put lots of stress on my thyroid to start HRT) the thyroid could well be the underlying factor for them too...

[Wrensong]

Joziel, don't worry about the quotes facility, what you've done instead is fine  . 

Good that your TSH on T3 was not suppressed despite the T3 therapy. 

Yes, as you say it takes some time for Thyroxine to exert its effects, but that's more applicable to situations where the patient is hypothyroid.  As your TSH is already close to bottom range on T3, indicating you have plenty of thyroid hormone in your system, what I'm thinking is that adding any extra, this time in the form of Thyroxine, could quickly render you effectively hyperthyroid.  I imagine your doctor has warned about this possibility, but do please look out for any indication of it so you can flag it up if it happens before it makes you feel terrible.
Wx

[Wrensong]

Hi Furyan

I split my NDT to morning and early evening but since I increased the dose last week (only by 1/2 grain) I’ve noticed faster heart rate after the second dose when trying to fall asleep. Tonight is worse as I’m feeling a bit warmer too and taking ages to fall asleep. Reason I’m confused is because I don’t know whether this is because I’m now taking too much NDT or just taking the second dose too late.

Yes, absolutely, difficult to be sure & I've been in the same situation when taking a 2nd dose of T3 later in the day.

Maybe I should take it in the afternoon?

Yes you could shift it to earlier in the day or perhaps try reducing the 2nd dose to 1/4 grain, if you can split the tablet.  The T3 in it is stimulating, keeping you awake & will be boosting your metabolism, raising heart rate & making you hotter.  Long time since I took NDT & can't remember how small the tablets are to know whether this is feasible for you?

Tonight is more confusing because I foolishly increased my progesterone due to slight spotting during the day.

Yes, again that adds to the difficulty for you in working out what's happening - progesterone can increase body temperature & research shows it can have a thyroid boosting effect, whether that explains the former I'm not sure.

Good luck with the appt.
Wx

[Wrensong]

Hi Floral,

Wrengsong abs no need to mention posting as I’m learning from others.

Good, that's one of the the great things about the forum, lots of experience & knowledge shared .

Sorry you have quite a wait for your appt, but at least something is in the pipeline now that will hopefully prove helpful.  Sounds as though you've been having a very difficult time of it.
Wx

[Floral]

Thanks Joziel for all the info.  I am not looking fwd to the juggling as I’m bad enough!  I will def send of tomorrow for the RT3 test👍 Also I’m praying for cancellations.  Hope this regime works out for you🤞I’m not expert but doesn’t increasing estrogen mess with thyroid?

Wrengsong, my heart races even though my FT3 is low, P Robinson states this as a symptom of low but it can also cause slow heart rate.  This is so confusing😶
I just want my body to be at ease again.

[Furyan]

Hi ladies,  Good golly gumdrops😬 thyroid or menopause?  aren’t we so lucky to be landed in the valley of hormones😫

Wrengsong abs no need to mention posting as I’m learning from others.  We are all unique and may have to trial stuff to get to a good place. 

Joziel & Furyan I am sorry to hear of how difficult thyroid issues are for u both and really pray you both get sorted soon.  Menopause is enough on its own!!

My issue really kicked off after covid vaccine, and then covid virus - total hell, my whole system got mucked up, I would begin to feel better and then crash again and this has been a pattern and each crash has created more fatigue along with hair loss, freezing feet, dizzy spells, low blood sugar symptoms, low mood sometimes extreme, anxiety, palpitations and sweats, low stomach acid, low digestive enzymes, low appetite, mood swings and more, I have never been affected as badly in all my years of going through meno SO I do think my thyroid is not working properly. 

Joziel your thyroid issue mirrors mine - tests look ok but for low T3, how long ago since you developed real issues?   I was in touch with P. R (uk author) not sure if allowed to name?  on thyroid especially T3 and he said even though my TSH & T4 etc were ok, because my FT3 is very low and I’m symptomatic then it’s hypo and I’d need T3 in some form.  I did see on a utube video that few things can cause conversion probs one being a vaccine, virus, others were inflammation, gut issues list goes on…..abs pain in the rear!!

I am not sure what my answer will be but I need a life again🙏🏻 my apt with Dr C is not until beg of Feb.  This recent crash left me on sofa for 10 weeks.

Please post ladies it helps others.

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

Re: low FT3, all it takes is for that to be lower than optimal for us to be hypothyroid regardless of what TSH and FT4 are. There are lots of (particularly) women who report this…

[Wrensong]

Wrengsong, my heart races even though my FT3 is low, P Robinson states this as a symptom of low but it can also cause slow heart rate.  This is so confusing

Yes that's right Floral, usually low T3 causes the metabolism to slow down, so heart rate is often lower than normal in hypothyroidism, we tend to feel cold, retain fluid, gain weight, have sluggish digestion & low mood.  But the stress our bodies are put under by various kinds of untreated or poorly managed health conditions (including hypothyroidism) can sometimes cause the heart to race too. 

Many menopausal women with normal thyroid function find they have episodes of uncomfortably raised heart rate too, sometimes thumping harder, or the feeling of irregular beats & flutters & often accompanied by feelings of anxiety or panic.  Sometimes an increased heart rate can occur during flushes & night sweats.  It can happen whether we are on HRT or not & being on the wrong dose of HRT can affect our heart rate too.  I agree it can be very confusing & quite a few symptoms of thyroid disease & menopause overlap so this is one of the difficulties for doctors & patients in distinguishing between the 2 possible causes.  For those of us already on thyroid replacement menopause can be especially confusing as our thyroid dose may need to change as a result of the changing sex hormone levels.

There's a link here on how to reduce stress with breathing technique, it might help you feel more in control when you're conscious of a racing heart.   Learning how to meditate & can also be really helpful.  I did that during peri & it really helped me.

https://www.nhs.uk/mental-health/self-help/guides-tools-and-activities/breathing-exercises-for-stress/

Wx

[Furyan]

Hi Furyan

I split my NDT to morning and early evening but since I increased the dose last week (only by 1/2 grain) I’ve noticed faster heart rate after the second dose when trying to fall asleep. Tonight is worse as I’m feeling a bit warmer too and taking ages to fall asleep. Reason I’m confused is because I don’t know whether this is because I’m now taking too much NDT or just taking the second dose too late.

Yes, absolutely, difficult to be sure & I've been in the same situation when taking a 2nd dose of T3 later in the day.

Maybe I should take it in the afternoon?

Yes you could shift it to earlier in the day or perhaps try reducing the 2nd dose to 1/4 grain, if you can split the tablet.  The T3 in it is stimulating, keeping you awake & will be boosting your metabolism, raising heart rate & making you hotter.  Long time since I took NDT & can't remember how small the tablets are to know whether this is feasible for you?

Tonight is more confusing because I foolishly increased my progesterone due to slight spotting during the day.

Yes, again that adds to the difficulty for you in working out what's happening - progesterone can increase body temperature & research shows it can have a thyroid boosting effect, whether that explains the former I'm not sure.

Good luck with the appt.
Wx

Before reading this, I experimented with taking 1/2 grain mid-afternoon rather than later. I didn’t suspect that I needed to reduce the dose because I have hypo symptoms in every other respect. Also, I read somewhere that until I have optimal T3 my body might sometimes release adrenaline, which causes palpitations and feeling warmer. Anyway, what was interesting with taking dose 2 earlier, is that it stopped my afternoon slump and gave me a nice flow of energy. But I’ve now started to feel cold and a little weak near bed time tonight and I'm wondering if it’s a reflection that I need to increase my dose soon. It’s only 8 weeks in of going back on NDT, people tell me it’s early days!

[Furyan]

Thanks Joziel for all the info.  I am not looking fwd to the juggling as I’m bad enough!  I will def send of tomorrow for the RT3 test👍 Also I’m praying for cancellations.  Hope this regime works out for you🤞I’m not expert but doesn’t increasing estrogen mess with thyroid?

Wrengsong, my heart races even though my FT3 is low, P Robinson states this as a symptom of low but it can also cause slow heart rate.  This is so confusing😶
I just want my body to be at ease again.

Yes, fast heart rate can be a symptom of low T3 because it was also happening to me during my crash. As I understand it, the adrenals can release adrenaline when T3 is low, it’s a coping mechanism because the body is understandably under stress. Doesn’t happen all the time, but it’s potentially a symptom for some of us as well as the usual slower heart rate.

Re: oestrogen, this is exactly why I dialled back slightly on the oestrogen recently while I work on optimising my thyroid. Studies suggest it’s oral oestrogens that are the main issue for thyroid meds, but I’ve also recently read that (too high) oestrogen can impact on the meds too - unlike progesterone which, as Wrensong said, enhances the circulation of thyroid hormones. It’s a bloody minefield and feels horrible to navigate especially during these cold, winter months. I can’t wait to see the thyroid doctor - I just want me back!

[Wrensong]

Furyan

Anyway, what was interesting with taking dose 2 earlier, is that it stopped my afternoon slump and gave me a nice flow of energy. But I’ve now started to feel shivery and a little weak near bed time tonight and I'm wondering if it’s a reflection that I need to increase my dose soon.

Good that it helped you get through the afternoon more easily, but yes, probably too soon after increasing dose only last week to know whether you'll need a further increase just yet I'd have thought.

Yes many articles state only oral oestrogen affects thyroid levels via increasing TBG but quite a few of us on here have found we need to tweak our thyroid dose in response to changes of even transdermal oestrogen, so I wonder whether there may be other mechanisms involved as well that are yet to be uncovered.  My sense is that it's mostly those of us on some form of T3 who tend to have more probs balancing thyroid meds with HRT.   I've noticed it's increasingly being stated that transdermal may just be less likely to affect thyroid status than oral oestrogen, suggesting there's less certainty about possible interactions these days.   Perhaps depends on genetic differences & individual biochemistry as to how we metabolise the two in tandem.   We can only be vigilant & try our best.  Easier in postmenopause, in theory anyway!  Sorry can't remember whether you're peri or post.

[Furyan]

Furyan

Sorry can't remember whether you're peri or post.

I’m over three years post

[joziel]

In my eyes, it all has to be optimised anyways, so I may as well get the estrogen to where it needs to be sooner rather than later. I'd hate to get my thyroid all lovely - and then increase estrogen and mess everything up again.    Just like those on T4 and T3 may need to increase one and reduce the other, the sex hormones are just other hormones we need to dial up/down as well. Yes, there can be interactions - but since the symptoms I have can also be due to estrogen fluctuations (needing a higher level to override those fluctuations), I'd rather increase estrogen too.

I'm pretty sure it's mostly thyroid for me though - it's when I've done things with thyroid meds that I've seen the symptoms change. Increasing estrogen has done nothing. (At 5 pumps and counting now.)