Test results show overmedicated but I don't feel it in the slightest - help!

[Flossles]

Hello,

I've been on NDT for just over a year for hypothyroidism (also have hashimotos and a U4 nodule in my thyroid which I still don't know if it's cancerous or benign). Started on Naturethroid, made me feel terrible, then tried NP which made me angry quite a lot and still fatigued but I was able to leave the flat and start college, then went on to Armour after hearing about the formulation change with NP - it made me so ill and I had to drop out of college, then ran out of Armour and used the Naturethroid I had left over - felt better but still very fatigued. I'm now under the care of a new endo and am now being prescribed it on the NHS. I'm taking ERFA and was told to take 1.5 grains but it made me not able to function, I was severely fatigued and cognitively impaired, I constantly felt like I was coming round from a general anaesthetic! I tried calling his secretary to let him know but nobody called me back so I upped the dose to 2 grains. I'm still very fatigued but not half as bad as what I was on 1.5 grains. I can now get out on the odd day for walks and skateboarding (still don't feel like I could work or go back to college though).

I've just had my NHS and medicheck results back and both show I'm taking too much but I don't feel overmedicated at all. I'm feeling very upset and am worrying the endo is going to reduce my dose when he sees my results. I was hoping to up the dose again but now I'm too scared.

NHS results -

TSH less than 0.05

T4 18.4

T3 2.9 (sorry I don't have ranges)

Medichecks results -

TSH 0.015 (range 0.27-4.2)

FT3 9.49 (range 3.1-6.8)

FT4 18.6 (range 12-22)

Both tests were done at the same time, roughly 11-12 hours after my medication which I take at around midnight.

Any help would be very much appreciated!

[Hidden]

Your FT4 levels are surprisingly high for someone on 2 grains of Erfa so +/- 75 mcg of T4...you are not taking levothyroxine as well, are you? With FT4 levels close to the upper normal limit, some of that T4 is bound to convert to T3...along with the T3 you are getting from Erfa.

I am not sure what to say since your FT4 is high in range and your FT3 above range (the TSH is irrelevant once on meds, esp T3). Normally, that would point to being overmedicated, although 2 grains is not that high a dose. But it would seem your symptoms are more indicative of HYPO, not hyper, right?

This is what comes to mind when I read your post:

stopthethyroidmadness.com/n...

[Flossles in reply to Hidden]

I know right, I've never seen my FT4 that high ever I don't think, even when on levo alone! When I was on 2 grains of NP it just about scraped into range! I'm currently only on Erfa.

And yes, my symptoms are most definitely more indicative of hypo. I've experienced what it feels like having too much of NDT as it happened when I tried Armour and couldn't handle 1.5 grains and had to take just 1. Anything more made me feel jittery, dizzy, racing thoughts, palpitations etc. I have none of that on the dose of Erfa I'm on, I mean I have anxiety and other mental health issues alongside the physical symptoms of hypo but not any of the other stuff I just mentioned. Like you say, 2 grains isn't even high, I'm so confused!

[tattybogle in reply to Hidden]

I just had a read of the link, but stopped when i got to this bit

" they may have inherited a faulty deodinase enzyme (meaning you can’t convert T4 ever)"

That's a massive oversimplification, and definitely not how deiodinases work,

Not sure i'd trust the rest of it for accuracy based on that alone.

[Flossles in reply to tattybogle]

I haven't read the link yet but STTM info I find frustrating and aggressive. They seem to think NDT is for nearly everyone, and if it isn't then you're the one at fault and it must be low or high cortisol or iron/ferritin etc. Great for some info but I've stopped going to their website now.

Edit - I have actually read that page on STTM many times and I find it really annoying and confusing the way they talk about cortisol issues.

[Lalatoot in reply to Flossles]

The person responsible for stop the thyroid madness is not medical. She has an M. Ed which is an education degree.

[Hidden in reply to tattybogle]

I believe they are right about some things...I definitely noticed a connection between cortisol and hypo symptoms with high FT3. I don´t think you can dismiss everything they say.

[tattybogle in reply to Hidden]

I'm afraid that's the way i make my mind up about advice .... i check it against what i already know to be true, and if that matches up ,then i'll listen to their opinion on things i don't understand , like cortisol.

But if they are wrong about one thing and say it in such an authoritative way, then how can i trust the rest of it ?

[Flossles in reply to Hidden]

Definitely not dismissing everything they say! Like I said, they are great for some things but I find their tone somewhat aggressive and that's what I don't like.

[helvella Administrator in reply to tattybogle]

STTM has a page headed Thyroid Medications for hypothyroidism (NDT, T3, etc)

On it there are numerous mistakes. I select a handful which, in this internet age, are each trivially simple to verify. (There are many others but I decided to keep to those for which there is little or no excuse and anyone can check.)

Out of date links

pillbox.nlm.nih.gov/pillima...

Which advises you got to the new version: pillbox.nlm.nih.gov/index.html

Failing links

nutri-meds.com/v/vspfiles/d...

Which displays: Sorry! That page doesn't seem to exist.

Speculation

Bizarre equivalency information (but, oddly, only for one desiccated thyroid product!):

However, together T4 and T3 may potentiate each other giving a therapeutic effect equivalent of 25mcg of T3 and 100mcg of T4 per 60mg.

Which would make it the most potent desiccated thyroid product we have ever seen. And without any real explanation.

Misspellings

Can’t get the name of one of the world’s largest pharmaceutical companies right: Phizer (twice) - it should be Pfizer. She gets it right once!

Writes Tijodthyronin (available in Austria) – should be Trijodthyronin.

Out of date information

Can’t keep company names up-to-date using Libertas Pharma when, though it did change to that for a while, has now reverted to Mayne Pharma.

Misleading description

LIOTHYRONINE SODIUM (Generic) by Sigma Pharm, 5 mcg, 25 mcg and 50 mcg. Has an 18 on one side, a greek E on the other. No they don’t! I quote Wiki:

Epsilon (UK: /ɛpˈsaɪlən/,[1] US: /ˈɛpsɪlɒn/; uppercase Ε, lowercase ε or lunate ϵ; Greek: έψιλον) is the fifth letter of the Greek alphabet, corresponding phonetically to a mid front unrounded vowel /e.

Σ, the letter which actually appears on the tablets, is the upper-case sigma and corresponds to the letter “S”.

stopthethyroidmadness.com/a...

I know how much effort it can take to keep such information up-to-date. I sincerely hope that I do better than this.

[Lalatoot]

Flossles we had the same discussion 6 months ago when you were considering changing your meds. You were considering adding levo to ndt or going on a levo lio combo to give you more control of FT3 and ft4 rather than the fixed ratio in ndt. The same advice we gave then still applies.

[Flossles in reply to Lalatoot]

Hey Lalatoot , I know and I asked the endo I have about that and he said no to combined T3 and T4, or T3 alone. I said I'd try this brand of NDT to see if it would help and a couple of weeks ago on the higher dose I'm on I was feeling alright for a week but I feel like I need more but after seeing those results obviously I can't do that. I tried adding levo with my NDT a while back (I think it was after talking to you) and I felt awful and couldn't handle it past a couple of days. I just need this endos secretary to get back to me so I can talk to him! This alongside the nodule that a surgeon wants to remove is all too much.

[tattybogle in reply to Flossles]

I sympathise with your predicament, but can't figure it out i'm afraid. That FT3 seems so high for the dose you're taking , and like you say ,why are there no symptoms of too much T3.

i don't know anything about nodules, but is it possible it's coming from the nodule ?

(i've heard of 'hot' nodules.)

I have a similar problem with Levo only at the moment . My results say FT4 is 200% through the lab range, but i don't feel overmedicated , and if i reduce it by even a tiny amount i become clearly undermedicated. But at least i still have the option of reducing Levo a bit and trying to add some T3, but i really don't know what you can do next with those results.

I'm surprised to hear the NHS would give you NDT but not a trial of T3/combo.That's weird , (and unhelpful)

Sorry i haven't got anything useful to suggest , just another voice , lost in the fog.

[SlowDragon Administrator]

Ft3 results are radically different between the two tests?

Essential to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking?

As you have Hashimoto’s are you on strictly gluten free diet?

And/or dairy free diet?

[Flossles in reply to SlowDragon]

I've just realied that the NHS don't test FT3 (not where I am in Leeds anyway) and that it's actually total T3.

My vitamin levels are totally fine as I get them tested through medichecks whenever I get a thyroid test. I haven't been taking my supplements daily like I used to and I don't feel any worse for that. In fact, when I was gluten, dairy and sugar free, and took all my supplements daily, and took the different NDTs I've had over the last year, I've felt worse at times. When lockdown happened I started eating gluten and dairy again, not intentionally but I've been eating it most days and don't feel as terrible as I did when I was completely off it but taking Armour. Also, my antibodies are now lower than they were when I wasn't eating gluten/dairy! I can't bear the unpredictability of hashimotos! I keep meaning to cut them out again but sometimes doing this triggers past disordered eating I used to have.