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[Peanut31]

Peanut31, if you're reading, I've sent you a PM.
Wx

Hi, I’ve replied.

Xxx

[Wrensong]

Hi Furyan, I have taken NDT in the past but couldn't get on with it, so yes, familiar with its composition.  I take Thyroxine & Liothyronine these days.  You'll be aware that the proportion of T3:T4 in NDT is relatively high compared to what happens in the human body, but I know some people feel better on it than with synthetic thyroid meds.

I was up til recently on a keto/low carb diet (had to stop when I crashed) . . . When I crashed, A&E did a TFT, which showed suppressed TSH, normal high FT4 and very low FT3 (although the latter was supposedly “in range”). My gut feeling about a possible conversion problem and low T3 has been proven as I came off T4 monotherapy and began to build my dose of NDT because at least my energy is slowly coming back.

Ooh  this set alarm bells ringing in relation to thyroid health as intake of adequate carbs is considered to be very important in hypothyroidism, not least for conversion of T4-T3.  I imagine from your saying you had to stop the diet that you're aware of how a too low carb diet can be detrimental for thyroid function, but I'm posting some links about it here in case other members with thyroid concerns are not. 

https://www.palomahealth.com/learn/low-carb-diets-thyroid

https://hayatnutritionandwellness.com/keto-and-hypothyroidism

https://chriskresser.com/is-a-low-carb-diet-ruining-your-health/

Floral, apologies for cluttering your thread with this issue but I feel a responsibility to flag up anything that may be harmful to someone with thyroid issues as & when it arises.

Someone else cautioned me against tweaking it and focus on optimising TH for now, as that’s the most important thing to get right.

I think that's sensible - getting your thyroid sorted is fundamental to your wellbeing so I think I would concentrate on that for now.
Wx

[Wrensong]

Peanut31, thank you for your message  .  I have replied!
Wx

[Furyan]

Hi Furyan, I have taken NDT in the past but couldn't get on with it, so yes, familiar with its composition.  I take Thyroxine & Liothyronine these days.  You'll be aware that the proportion of T3:T4 in NDT is relatively high compared to what happens in the human body, but I know some people feel better on it than with synthetic thyroid meds.

I was up til recently on a keto/low carb diet (had to stop when I crashed) . . . When I crashed, A&E did a TFT, which showed suppressed TSH, normal high FT4 and very low FT3 (although the latter was supposedly “in range”). My gut feeling about a possible conversion problem and low T3 has been proven as I came off T4 monotherapy and began to build my dose of NDT because at least my energy is slowly coming back.

Ooh  this set alarm bells ringing in relation to thyroid health as intake of adequate carbs is considered to be very important in hypothyroidism, not least for conversion of T4-T3.  I imagine from your saying you had to stop the diet that you're aware of how a too low carb diet can be detrimental for thyroid function, but I'm posting some links about it here in case other members with thyroid concerns are not. 

https://www.palomahealth.com/learn/low-carb-diets-thyroid

https://hayatnutritionandwellness.com/keto-and-hypothyroidism

https://chriskresser.com/is-a-low-carb-diet-ruining-your-health/

Floral, apologies for cluttering your thread with this issue but I feel a responsibility to flag up anything that may be harmful to someone with thyroid issues as & when it arises.

Someone else cautioned me against tweaking it and focus on optimising TH for now, as that’s the most important thing to get right.

I think that's sensible - getting your thyroid sorted is fundamental to your wellbeing so I think I would concentrate on that for now.
Wx

Yes, the proportion of T4 to T3 is higher in Armour and I figured that, since I’d got on well with it for a few years before and seem to be in dire need of T3 now, I’d go back on it. I was desperate and fortunate I had some left otherwise I dread to imagine the state I’d be in now. In hindsight, when I was first diagnosed hypothyroid, I may have benefited from combined T3 and T4, but I didn’t have strength to battle more with NHS endos…

Yes, I wish I’d known about contraindications between keto and fasting with thyroid and menopause! Since I crashed, I learned how a few factors (including keto and menopause itself) were likely huge factors that compromised my poor thyroid, which I had been neglecting to focus on them. Lesson well and truly learned! Needless to say, I’ve built more carbs into my diet chiefly because of that but also because my body needs a more immediate source of energy for the time being. Once my energy is back, I’d aim to achieve a better balance this time. Thanks for those links, I know other thyroid patients will find this useful as well.

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

[joziel]

I echo what Wrensong has said about keto. I think my own high rT3/low T3 issues were caused by low carb/keto/intermittent fasting and a history of disordered eating.... But sometimes just changing all that isn't enough to reverse things. Don't do it, though, if you can help it...

[Furyan]

I echo what Wrensong has said about keto. I think my own high rT3/low T3 issues were caused by low carb/keto/intermittent fasting and a history of disordered eating.... But sometimes just changing all that isn't enough to reverse things. Don't do it, though, if you can help it...

Joziel, I find it helpful that you shared your experience, thank you. Not that I want anyone to go through this but it’s reassuring to have possible explanations of what part I played in this. Looking at previous TFTs over the years, it’s possible I’m not the best at converting T4 anyway but I’ve done low carb for years, even prior to my diagnosis. Going even lower and fasting with keto was a big ‘no, no’ and I get the alarm bells that you and Wrensong felt. I’ve taken vitamin D for ages but have now added selenium to supplement. I agree, simply reintroducing carbs and whatever doesn’t automatically mean I’ll magically start to convert but I hope it helps x

[Floral]

Ladies such a minefield!  Sorry to read what some of you are going through.  I’m no help really as not any experience. 
I’ve no diagnosis yet but getting a full thyroid etc testing tomorrow morning to send off to Thyroid uk clinic. Can’t come soon enough I’m so affected, life again at a standstill this past 6 weeks. X

[Furyan]

Ladies such a minefield!  Sorry to read what some of you are going through.  I’m no help really as not any experience. 
I’ve no diagnosis yet but getting a full thyroid etc testing tomorrow morning to send off to Thyroid uk clinic. Can’t come soon enough I’m so affected, life again at a standstill this past 6 weeks. X

Good on you for being proactive and taking steps to get your bloods done 👏🏽👏🏽👏🏽
Do let us know how it goes/results if you want to  x

[Floral]

Of course I will let you know!
Hoping something that can be sorted🤞

[Floral]

So ladies
So here are my new thyroid results, I’m not seeing anything obvious.

TSH 2.34 (0.270 - 4.2) range
Free T3 3.9 (3.1- 6.
FT4 15.7 (12 - 22)
Thyroglobulin antibodies 12.1 (0 -115)
TPA <9 (0-34)

I still feel terrible with patch change over my estrogen 213  (I’m 62) anxiety awful, when will this ever stop🥲

Tks for reading

[joziel]

Did you test your rt3? That one is important, it was the only test which was out for me. I'm now on T3...

213 estrogen is pretty borderline. Some women would feel fine with that amount but many would be symptomatic. My Newson dr says most women do best between 400-600pmol for estrogen. Obviously loads are fine with less than that and some need even more, but it's a ballpark... Mine was 283pmol and I was told to go up a pump (now on 5 pumps, I don't absorb v well).

It's possible you just need more estrogen....

[Wrensong]

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

[Wrensong]

Hi Floral, sorry to be so late replying as I said on your other thread earlier today.  Thank you for posting your latest results, which I imagine are disappointing for you.  As you say, there's nothing very obviously wrong with the TFT, though your T3 is quite low down the scale & patients on replacement with a confirmed thyroid disorder often need their TSH to be quite low to feel well.  I did before menopause but I'm around your age now & a decade+ postmenopause & feel best with a TSH around 2 - 2.5.  I think you'd struggle to get a GP to treat with thyroid replacement on the basis of this test.

You say you feel awful with patch changeover.  How many days are you going between changes?  Sorry if we've covered this before, but some of us change twice weekly patches every 3 days to avoid a possible dip in levels towards the end of a patch's life.

As Joziel says, your oestrogen dose may not be right for you.  Have you tried increasing slightly (or been on lower doses to know how that suited you?)
Wx

[joziel]

I agree, Floral, that T3 is quite low - which is why you really need to know the rT3 as well. That was what my original (not on thyroid meds) results were like - a pretty low T3, but in range. When rT3 was tested it was 33 (v high). So that, combined with the low T3 means I was hardly getting any T3....

By the way, I have an update on my thyroid stuff now. (Wrensong I know I was messaging you about it for a while too.) My symptoms were really debilitating - whole body shaking at night, heart beating hard and faster than usual, hypnic jerks every time I started to fall asleep and - of course - insomnia. For 18 months and counting...

I was put on T3, only 5mcg 3x daily, to try to kick start my body into converting properly again. Because I had high/good T4, but low (in range) T3 and high rT3. So the thinking was that it was a conversion problem, that I was converting T4 to rt3 instead of T3. We didn't know why as I had addressed everything which could have caused this but my body wasn't getting the memo. I felt much better for about a month on the T3 - it was the only thing I've ever tried which affected the symptoms at all, so I was then pretty sure it was thyroid related. And then everything went to poop again... symptoms came back about as bad as before.

I had bloods done after 9wks on T3 (waited 18hrs since the last dose to test, tested in the Am, fasted, no biotin etc..!)... And whilst my rT3 had come down to 15 (borderline ok), and my T3 had gone up slightly (still not in top of range), my T4 had plummeted: Now my free T4 was 9.7 (range 12-22) - it had been 18 before - and my total T4 was 54 (range 59-154). I was given an emergency appointment immediately (private thyroid dr) and prescribed 50mcg/day of levo/T4 as well. We kept the T3 the same whilst we see how I convert the T4. More bloods in January....

I'm now v confused about whether I do/did have a conversion problem or whether I do/did have a genuine thyroid problem.

Some people say that if you don't really have anything wrong with your thyroid and you take some T3, it will stop your thyroid working and maybe that's why my T4 plummeted and I got the second bunch of results - yet I also wasn't taking enough by itself to compensate. (I mean, I should have been on a proper T3 dose, not a micro 5mcg 3x/day dose.) That makes me think maybe I can come off these meds at some future point...?

But my dr said something like... Sometimes the body does an amazing job of masking problems with thyroid results and it can be hard to see what the problem is, there can just be one thing slightly out and nothing obvious. But if you give someone meds and poke the system a bit, it falls apart and can then reveal what the problem is - implying that low T4 was always my original problem and my body was increasing rT3 to slow everything down and compensate for not having enough... which is why I didn't have low T4 originally. Or something.

Anyway, at the moment I just need to feel better and get rid of these symptoms and then reevaluate. But I'm v confused. I'm doing bloods again in January, including rT3. And I am sleeping much better with minimal symptoms again after a couple of weeks of levo/T4 50mcg, on top of the T3. I still have slight symptoms (buzzing feet, hands going a bit numb sometimes in sleep) but they are mild enough to sleep through.

[Wrensong]

Hi Joziel, thank you for the detailed update & I'm sorry to know you're still having problems.

I've never known someone on T3 who hasn't had a prior diagnosis of thyroid disease so your situation is difficult to interpret & uncharted territory for me!

I had bloods done after 9wks on T3 (waited 18hrs since the last dose to test, tested in the Am, fasted, no biotin etc..!)... And whilst my rT3 had come down to 15 (borderline ok), and my T3 had gone up slightly (still not in top of range), my T4 had plummeted: Now my free T4 was 9.7 (range 12-22) - it had been 18 before - and my total T4 was 54 (range 59-154).

I imagine your low T4 results were due to your supplementing with T3, as with more active thyroid hormone in the body there would be less call for your thyroid gland to produce T4.  Can I ask what your TSH was at the time of the TFT that showed the low T4?  Did the endocrinologist comment on the reduction in your rT3?  I don't understand what's going on there.

I'm now v confused about whether I do/did have a conversion problem or whether I do/did have a genuine thyroid problem.

That makes 2 of us!  I can't remember all the detail of your situation before you started T3, but as you know I was worried about your possibly starting on T3 without the certainty of a diagnosed thyroid disorder.

Some people say that if you don't really have anything wrong with your thyroid and you take some T3, it will stop your thyroid working and maybe that's why my T4 plummeted and I got the second bunch of results

It was always my understanding that the thyroid gland eventually atrophies on replacement because it's effectively been made redundant by the influx of exogenous thyroid hormones.  I think my GP must have told me this at the time of my thyroid surgery as I wasn't referred to an Endocrinologist until some years later, but I've never come across any research papers confirming that & how long the process takes I don't know, though presumably longer than the few weeks you've been taking T3.  Any continuing autoimmune attack would also contribute to the gland's demise over time, but if you don't have raised thyroid antibodies (sorry, can't remember for sure) that shouldn't apply to you.  I've been on thyroid replacement for nearly 30 yrs, since just before hemithyroidectomy & indeed the 2 ultrasound scans I've had in the past 15 years or so have shown there's virtually no thyroid tissue remaining from the half originally left intact, but that will presumably also be partly a consequence of the Hashimoto's.

yet I also wasn't taking enough by itself to compensate. (I mean, I should have been on a proper T3 dose, not a micro 5mcg 3x/day dose.) That makes me think maybe I can come off these meds at some future point...?

You're actually on 3 times the dose of T3 I currently take (together with T4) though I did need 10mcg daily to feel well when I was younger.  My current T3 dose is roughly physiologic; a healthy gland is said to produce approx 13/15:1 T4:T3, depending on the source you read, as you know the rest is produced by conversion elsewhere in the body.  One 5mcg dose seems to be as much as my body can tolerate at this age, though it doesn't keep my T3 within range.  T3 is said to be roughly equivalent to 3-4 times the strength of T4, so your 3 x 5mcg dose would equate to 45-60mcg Thyroxine, as I expect you know.  You're right, some thyroid patients do take a much higher dose of T3 split across the day, especially those on T3 monotherapy & many patients on T3-T4 combination therapy take 2 or 3 doses of T3 a day, in both cases because of its short half life.  The dose of either thyroid hormone required is very individual, but a person's weight & any residual thyroid function will have some bearing on it.

If you start to feel overtreated on the T4-T3 combination (consistently too hot, anxious, fast & possibly irregular heart rate, insomnia, racing thoughts, passing large volumes of urine, excessive appetite, feeling dehydrated, unexplained weight loss), please flag it up to your doctor.  Obviously some of these symptoms can be due to menopause, so it can be difficult to be sure, but better to err on the safe side.

Please let us know how you get on Joziel.

Floral, I'm sorry for all this detail, but Joziel has raised these concerns here so I wanted to try to think them through with her.  Please don't worry about any of this, if it turns out you do have a thyroid problem (hopefully not) it's usually not as complex to treat as it might appear here!
Wx