I am sorry to continue this saga, but could I get your opinion on this and links to any medical studies/sources that might help me? I feel I need to go armed whenever I see anyone from Endocrinology. My GP is great and I was on track for an increase in T4, but I fear she will be overridden.
I had a test last week:
TSH - 0.127
T4 - 7.3 (12.0-22.0)
T3 - 2.8 (3.1-6.8)
The endocrinologist has said I must stay on 100mcg T4 because it appears I am just not taking the medication correctly, i.e. she apparently said I am taking it and then eating or something. I AM NOT. I wait at least an hour. I am not an idiot. I know how to take a tablet.
I have been ill for seven years. The blood test prior to that was August 2017, also low T4 (but about 12.2) with a low TSH and a different endocrinologist told me to reduce my T4 solely on the TSH, ignoring the low T4. I am at my wits' end. My GP looked at the August result last week and said she would have INCREASED my dose in August, not decreased it. She was fully intending to increase my T4 but she is away this week and the endocrinologist has now interjected and said I am not taking the tablets "correctly" (I really am) and so I must stay on them and do it correctly before having yet another blood test.
I am so upset.
Can anyone offer any guidance that might assist me? I have never once had an overactive symptom and I feel absolutely rotten; just how I have felt for virtually the whole of my 30s. I feel I have lost a decade to feeling ill and being miserable.
Many thanks
K
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Kitty1watson
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FT4 should be near top of range and FT3 at least half way in range
Do you have Hashimoto's? Also called autoimmune thyroid disease diagnosed by high thyroid antibodies?
Couldn't see any antibodies test results in previous posts
Did you have H Pylori? If so that's linked to Hashimoto's
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.
Ask GP for antibodies test, coeliac test and very important to test vitamin D, folate, ferritin and B12
You need 25mcg dose increase in Levo and retesting in 6-8 weeks
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Also request list of recommended thyroid specialists.
Thank you. I had an antibodies test once that came back negative (years ago) and it has not been done since. I cannot have a coeliac test as I am allergic to gluten and because I have not eaten it for years, any test will come back negative, because there is no gluten there to cause a reaction. I followed that advice re: morning test, not taking the medication and not eating beforehand. I have the book by Dr Toft but the last endo I saw was not interested and waved it away condescendingly. He just said suppressed TSH = heart attack. Frustrating.
Your Endo must be stupid. You clearly have a screaming low TSH with low Free T4, this is such a simple book example of central hypothyroidism. Guidelines for treating central hypothyroidism are to ignore the TSH and bring the FT4 into upper half of range, fine tuning according to symptoms.
Since central hypothyroidism can accompany additional pituitary deficiencies you need a full pituitary evaluation as well, LH, FSH, Prolactin, Growth Hormone/IGSF1, and Cortisol.
I’m so sorry you’re having to deal with this! My doctor pushed my dose of Levo up to 200mcgs a day and I STILL felt under-medicated, as if all the T4 was swilling around, unconverted, in my bloodstream. I felt poisoned on it. Then I began self medicating with T3 only and found out I had a DIO2 conversion problem (meaning I don’t convert T4 to T3 very well). I saw an endocrinologist who now prescribes me 60 mcgs a day of T3 and I feel well and healthy.
Thank you. I believe they did the hormone tests as well as I was just told on the phone "they're fine". I didn't have the energy to get all the results there and then, so I will ask for a print out next week, because I know better than to accept "they're fine" (not that I know what I am looking at!).
I do feel like I am smashing my head on a brick wall with the so-called experts at the hospital. I just hope my GP challenges them or just lets me carry on with the plan to increase my dose.
The test I had done was not a standard test. I had to pay for it. It was done by Regenerus Labs and specifically tested the DIO2 gene. Doctors don’t do this test.
Kitty, your problem is not that you're not converting - you don't have enough to convert! Your problem is that you're not absorbing it - and it's doubtful you would absorb T3 any better than t4! Your GP should be investigating your gut, starting by testing your nutrients, and if they are low, sending you to a gastroenterologist to find out why you don't absorb anything.
Sorry I had to google PPIs! No, I'm not. I was prescribed omeprazole in 2015 when I was pregnant and developed gallbladder problems followed by gastritis, but they did very little and I stopped taking them.
I have written to my GP and hope to hear from her soon.
I agree that you need to be checked out for central hypothyroid condition. Your results indicate the pituitary is not functioning as it should. Be absolutely firm and adamant with GP and Endo that you are taking medication correctly.
It has been said many times on this site.......your endo is probably a diabetes specialist with thyroid at the bottom of her "interests".
Your results clearly show a problem. Your pituitary gland is simply not sensing your dire lack of T3 and therefore is not barking at the thyroid to produce T4. You may also have a conversion problem on top of all this as well.
The negative feedback loop appears to be busticated and needs investigation for a start. Hopefully with a doctor who understands there are other glands in the body that can be the cause of hormone disorders besides the pancreas!
Ask to see another endo, and refuse to see the one you've been seeing up to now. Better still, ask to be referred to an endocrinology department in a different hospital. I have often thought that stupidity amongst doctors is contagious, and one bad doctor will have colleagues in the same speciality in the same hospital who are just as bad.
You clearly have central hypothyroidism i.e. your pituitary is not producing enough TSH. That could be because your pituitary is not functioning well, or because your hypothalamus has a problem and your hypothalamus is not giving your pituitary the correct instructions.
To identify central hypothyroidism you would need your pituitary function checked out. If that was okay then your hypothalamus would need checking out too.
Note - if your problem is with your pituitary then you have secondary hypothyroidism. If your problem is with the hypothalamus then you have tertiary hypothyroidism.
"Ordinary" hypothyroidism is strictly speaking called primary hypothyroidism, and is caused by problems with the thyroid. But in your situation your thyroid might actually be healthy - it just isn't being told what to do by the pituitary or the hypothalamus.
The treatment for central hypothyroidism is the same as it is for primary hypothyroidism i.e. replacement of the missing thyroid hormones - but your TSH level cannot be used to titrate your dose. Instead you would have to have Free T4 and Free T3 measured and used for that purpose.
Another point to bear in mind - If your pituitary or hypothalamus is not functioning properly there is a possibility that other hormones controlled by these two organs are deficient and you would need a thorough check on all of those hormones.
For a list of the hormones produced by the pituitary and the hypothalamus see these links :
There may be a problem with your pituitary - probably is - but it's not your pituitary that is stopping you absorbing the thyroid hormone you are taking. 75 mcg isn't an enormous dose, but your Frees should at least be in-range. Yours are incredibly low. Your gut needs investigating.
Your pituitary is underperforming, it may not be full central hypothyroidism. I would be tempted to complain about this endocrinologist on the basis of incompetence.
it's clear that your pituitary is not responding to your low fT3 and low fT4. Your TSH is not reflecting very low hormone levels. We would expect a TSH between e.g. 20 and 200 with these low levels (there's a wide variation in TSH response). Assuming you are not taking other medications at the same time it appears you just absorb less thyroxine than some people. They need to increase your levothyroxine substantially. You will probably need some liothyronine in the long term but for now sort out the levothyroxine.
Thank you, that's very helpful. My GP is away at the moment, but I do trust her more than the endocrinologists, as she immediately said she would increase my levothyroxine when she saw the previous results and they were just borderline low. I am in the process of emailing her ready for her return (lucky her!).
I have never heard of such a thing as "not taking it correctly". This is a new low for any rational human mind and I would suggest you get as far away from that "endocrinologist" as possible.
I've been taking thyroid replacement for all my adult life and I take it with coffee, cake, dinner or bed, breakfast or just plain tea. Day in and day out for decades. It matter really not in the big picture.
What does matter is that your T4 is at a scary level of low for feeling normal and you deserve to get it up to at least 1/2 of the scale or better.
You have a wack job for an endocrinologist. Unbelievable .. I'm so glad I ducked that bullet when the GP wanted to take my case up with one. I refused because they are obviously in a paradigm of thinking beyond reality or even their sacred test results.
Ah, the usual "Blame the patient" when the actual is is either plain ordinary undermedication, or absorption. The doctor couldn't possibly be wrong ...
On learning that I self-medicated with Liothyronine, one of the doctors at the practice I go to told me, ‘You need to get off it. It’ll fry your brain.’ It must be hard for her to accept I’m now prescribed it legitimately and I feel well and healthy. Patients aren’t stupid. I have an MA in English and know how to conduct research. And by that, I don’t just mean reading a few articles and websites full of conjectural posts. Treatment should be a collaboration between doctor and patient. I know my body better than any doctor.
I am so with you on this. I routinely get treated like a moron until they discover I am a solicitor. Then they just hate me for not being as stupid as they had hoped.
The correct response to that is: "Oh, is that what happened to yours?" Whnr they are particulary obnoxious, I say in a condescending tone, "I suppose you just went to a redbrick university - I'm Oxbridge, of course."
Update: GP has said endo is talking "a load of old tosh" and said I seem to have pituitary problem although those results came back OK. Increased levo to 150mcg and retesting in a few weeks.
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I totally agree and I really hope my GP helps me out! x
iron supplement - endo says i don't have to take it
Test results thoughts, am I thinking correctly?
I am on T3 only and taking 20mcg daily. I couldnt take any amount of T4. My blood test has just came back at TSH 69.4.
