Inconsistent blood test results... and I'm not feeling any better on T3

[Smorzando]

I did an at-home thyroid test with Monitor My Health on 29th March, after 8 weeks on 100mcg Levo and 10mcg of T3 - my results were:

TSH 0.12

FT4 20.6 (86% through range)

FT3 5.4 (62.16% through range)

Then, at the request of my GP surgery, I had a test with them on 8th April. Despite doing the tests under exactly the same conditions (24 hrs aftere levo, 12 hrs after last 5mcg T3), I got these results:

TSH 0.10

T4 15.7 (different range, but working out at 55.83% through the range)

T3 - not done, despite being on the form!

So..... I guess at this point I'm really starting to despair of ever getting better, and don't know what to do. To be honest, I am not really feeling the benefit of the added T3 at all, despite a few weeks of feeling an improvement when I increased my Levo from 75 to 100mcg earlier in the year (this improvement didn't last long).

I don't honestly feel like I'm better, overall, than before I started on any thyroid hormones in January 2020 - at that time, my TSH was 11, T4 was 37% through range and T3 was 50.27% through range.

I'm on the verge of giving up taking anything although I know that would be foolish. I have no trust whatsoever in doctors, and I'm even reluctant to make another appointment with the private endo in case she says there's nothing more she can do for me (I'm worried about the already under-range TSH). I feel an enormous sense of guilt about the amount the T3 is costing the NHS (it's being prescribed by my GP, amazingly). I don't think this guilt would be as bad if at least I was feeling well!

My apologies for this downbeat post, but if anyone could offer some support or guidance I would be enormously grateful.

Edited to add: since the last test, I have increased my T3 to 15mcg, using 12.5mcg of self-sourced Tiromel, and 2.5mcg of the prescribed Morningside T3. I haven't seen any difference .... it feels like I'm just taking sugar pills! 😞

[SlowDragon Administrator]

Looking at previous posts, you are lactose intolerant

So you need lactose free T3 (Teva)

It can take many months of tweaking to find your sweet spot

At next T3 prescription get Teva

Timorel is considered weaker than many and it isn’t lactose free

Yiu may need to be back on gluten free diet on T3

Lactose intolerance can be caused by gluten intolerance

[Smorzando in reply to SlowDragon]

Thank you SlowDragon. I had initially thought the big increase in my FT4 results from January (30% range to 86% range with only a 25mcg increase) was because of switching to Teva Levo, but then it dropped again, which threw me (could be a Hashi thing?). I'm only mildly lactose intolerant and don't completely avoid it. The low TSH suggests I'm absorbing it ok - or do you think otherwise?I've twice done a 3-month very strict gluten-free diet, to no effect. Is it really worth trying again? At this point I just don't know. I'm pretty much gaslighting myself into believing this is all in my head - hence avoiding doctors, who'll be only too quick to agree! 😕

[SlowDragon Administrator in reply to Smorzando]

On almost any dose of T3 TSH will become suppressed

It makes it even more important to be taking high enough dose levothyroxine and T3

Aiming for both approx 60% through range....as starting point

If lactose intolerant it’s likely necessary to avoid lactose as much as possible

[Smorzando in reply to SlowDragon]

Yes, well, I suppose that's partly why I'm getting so disheartened and confused.... first test after starting on 10mcg T3 my TSH was still over 1, it was increasing the Levo that suppressed it.And even with test results showing T4 and T3 over 60% through their ranges, I still felt awful.

I know this is a long journey and no doubt I have a long way still to go. But I guess that feeling so exhausted makes it even harder to fight. My family aren't being very supportive unfortunately, and I've recently had to say no to returning to work (prior to lockdown I volunteered one afternoon a week for Cancer Research) as I just don't feel well enough.

Thank you for your suggestions though and I'm sorry to come across as negative.

[Eryngium in reply to Smorzando]

I'm sorry that you are feeling so unwell Ex

[Smorzando in reply to Eryngium]

Oh thank you, that's really sweet of you 🤗

[AS14]

HiThere are a number of things that can prevent thyroid treatment from working, vitamin deficiency's, not raising to a high enough dose, low iron and low/high cortisol.

Low iron and low cortisol will stop the hormone from working dead in its tracks, too high cortisol can do it but low is worse and more common.

Having a good looking blood test but still feeling hypo is commonly seen in low iron or low cortisol. It doesn’t seem to make sense, how can you be taking a better medication, blood test show how much your FT3 has increased yet you feel awful or even worse than you did before you started. The biggest reasons for this situation are low cortisol and or iron.

Blood tests dont show how the hormone is working in the cell, it shows only whats in the blood. To get it to work properly in the cell you have to have optimal cortisol and iron.

It must be a full iron panel not just ferritin, you can have good or even high ferritin but low in other parts. Its having all parts just right in range.

Saliva cortisol tests are best, they show how much is free cortisol that your body can use at several points through out the day.

Regenerus and Genova are recommended here but Im afraid from my experience theyre not accurate. Medichecks are waiting for theirs to become available again and hormone lab uk are currently doing one.

Highly recommend Paul Robinsons book Recovery with T3, brilliant book that will tell you everything you need to know about using T3.

[Smorzando in reply to AS14]

Thank you.I had a full iron panel done last summer - results of which were ok; not perfect, perhaps but certainly not awful. (My ferritin was just 9 when tested in Jan 2020 but was up to 82 by the summer thanks to iron supplements).

I've had one cortisol (blood) test, also in Jan 2020 - it was an early morning one, and was slightly over range, which I put down to being very stressed about doing the fingerprick test, ironically!

I'm curious - why do you think Regenerus and Geneva tests are inaccurate? Given that I'm already confused by inconsistent thyroid tests, I'd be reluctant to take a test that I wasn't sure would give me reliable results.

[AS14 in reply to Smorzando]

My serum iron was ok, well so I thought, it was in the normal range sothought checked iron, move on to next thing. However I didnt realise that being in range means nothing, its where in range that matters, mine was bit less than a third through range, but actually needs to be three quarters the way through range. I had a blood and urine cortisol test over 6 months ago, both in range but very low in range. I then went on to get a Regenerus test that too came back low in range.

For the last six months Ive been doing everything I can think of to improve cortisol, and although Im still very unwell hypo wise there are some improvements that make me think cortisol has improved some what. Im sleeping lots better, I had awful insomnia, got little sleep and some nights no sleep at all, Ive been getting 8-9 hours sleep practically every night for a while now. I had a lot of stress, its massively reduced for some time and I intend to keep it that way. My diet too has had huge improvements, my appetite was poor before its much better now both in appetite and what I eat. These are just some of things Ive been doing to improve cortisol.

Ive been holding off with a saliva test as they are quite expensive so Ive done three blood cortisol tests, at least a month a part from each other and every one came back right at the top , just where it should be. However blood cortisol doesnt actually measure how much your body can use but all the same I found it encouraging that the same blood test six months ago had been right at the bottom .

I retested with Regenerus saliva cortisol again and my results came back worse than six months ago, not just worse twice has bad, to say I was upset is an understatement. How can all my work to improve it along with three consecutive blood test all great of made it far worse, it didnt make sense. I know blood doesnt show whats available for my body to use but for those to of gone from bad to great surely if even just a small amount of that is actually available to use fair enough, but to drop so ridiculously far doesnt make sense.

I asked on Stop the Thyroid madness for help , turns out practically everyone who uses Regenerus has very similar results. I went through every post I could find about cortisol tests and at least 3/4 who used Regenerus had results practically identical to me and most of those people had also been working on improving it. Of course its possible my results are correct but for so many people to have near identical results to me and they too say it doesnt fit with what theyve been doing to improve things something just doesnt seem right.

The opposite problem seems to of occurred with Genova, practically everyones result are off the chart high.

Somewhere in all of that there will be correct results but it does not seem statistically possible that so many people are so similar how would you know if yours is correct for certain.

Of course you have to use your own judgement so all I can say is I dont believe its accurate and after waiting 6 weeks for Regenerus to do my test, I dont feel confident using the results to base treatment on.

If zrt comes back the same as Regenerus fair enough, cortisol somehow got far worse than I thought but I just dont feel confident that its accurate.

Ive been very ill for a long time, Ive researched everything I can find, which includes lots of people who were just as ill and went on to get well.

Ive spent a lot of money testing, seen several doctors including a very expensive private endocrinologist who was waste of time.

All if this expense hasnt came easy, its been a really big stretch and I have to have confidence in the tests I do.

I know how expensive it is, the zrt is £145 ouch, but I cant sit and wait any longer and just have to make the best choices I feel I can

If there is just one thing you can do for yourself its to get Paul Robinsons book, Recovery with T3, every thing you could possibly need to know about T3 and thyroid treatment is in there.