I have always had a bit of an odd thyroid tbh. It’s done what I’m told it cant, but there you go. Years ago I remember just before going into surgery they found my thyroid to be under active. Never treated. I think it went back to normal. About 5 years later it went over active. Never treated. It went back to normal. Started a contraceptive pill last year, felt unbelievably exhausted. The gp said my results were borderline hypo. I wasn’t trusting of their opinion so I went through medichecks and had it tested and was told it looked to be going low and to keep an eye on it. On investigation (good old google) it looks to be a pituitary issue?! Or am I wrong and these labs are normal (ish?!) The gp surgery have tested since they said it was borderline low, but only tsh. No other hormones. But it’s my ft4 that is low? So why not re test that, despite my tsh being in range, that one is still low. Im so confused. I’m due to have it re tested this week. But I guess my question is, can the T4 be out of reference and the tsh in reference and all be ok? Or is something not working as it should. I feel like I’m confusing myself with all the information I have access to.
Thank you
Written by
Galjibba
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Well you have experienced the first thing that is common in thyroid problems - the lack of knowledge of doctors!In autoimmune thyroid disease also called hashimotos folks can have spells of hypo and spells of seemingly being hyper. Hashimotos is hypothyroidism where the autoimmune system attacks the thyroid. During an attack there can be spells of seemingly overactivity. Hashimotos is the most common cause of thyroid problems.
The tests for hashimotos are antibody tests .
A normal person has a TSH of around 1. In many countries a tsh of 3 is considered high enough for a person to begin treatment for hypothyroidism.
I would suggest that you have hypothyroidism. In your position I would get antibodies and vitamin levels tested. Vitamin levels are often depleted in hypos. Then take it from there by posting results on here.
Thanks for that! I had ordered the antibody tests alongside these tests but the lab forgot to process those tests and threw the samples away! I had an antibody test when I first went hyper in 2012 but I believe that came back normal. But I think that was Graves’ disease. I have said to the doctors so many times it feels like I swing back and fourth. I had covid last July and ended up in hospital due to other illnesses and they ended up giving me a large dose of steroids. Shortly following that it felt like my thyroid went into full hyper mode. I was pouring with sweat, I lost about a stone, I lost my appetite, I couldn’t sleep, I was surviving on about 2 hours a night. And I was bouncing off the walls all day. Tired, but couldn’t sit still for a minute. My house was unbelievably clean and I was doing this alongside home improvements and looking after 3 children by myself. And my anxiety and tremors were through the roof. They tested my tsh which came back at 1.7, after it being 4.2 in the June, but they didn’t test any other hormones and they said I was fine. I was not fine! After about a month I hit a wall and became unbelievably exhausted and just crashed. And I’ve not much recovered since to be honest!
Oh yes, lots of experience with doctors and their lack of knowledge! Wow have I had some disagreements over the last 10 years! Lol
Your antibodies for Hashimotos were negative in your post 8 years previous but given that you are unwell, antibodies wax and wane and FT4 is under range it would be prudent to retest TPOAb and TGAb.
When GP's are uncooperative members use private labs. ThyroidUK, the charity who runs this forum provides discount codes to help with cost (see link below). Members then post results complete with ranges (numbers in brackets) for others to comment. Iron and nutrients may also be tested this way. Deficiencies in ferritin, Vit B12, folate and Vit D are common in people with low thyroid hormone and so the suggested ones to be tested.
I was initially diagnosed with Graves due to ‘hyper’ symptoms (palpitations, weight loss, tremor etc) but antibodies actually show Hashimotos, so it’s well worth following advice from Lalatoot to test these, along with T4/ T3 levels and key vitamins (folate, ferritin, B12 and Vit D)
Hi Galijibba, your logic is correct, it would be more intelligent to continue to test your fT4 as well as your TSH. TSH does not always tell the whole picture.
You are right to expect your TSH to be higher when your fT4 is below range., but there are explanations:
Putting aside the potential for pituitary issues for now (where TSH doesn't raise appropriately in response to low T4 /3 levels ) ..... there is also a 'time lag' for TSH ....TSH is a bit like 'a window into the recent past ' .
Put very simply ...T4 and T3 results are 'now' ,and TSH results tell you what was happening last week. So this can sometimes explain results that don't seem to match.
You history of hypo/ hyper /hypo suggests autoimmune hypothyroidism , which can sometimes include periods of 'mild hyperthyroid' especially at the beginning .
If your pituitary's ability to produce TSH was inadequate to stimulate your thyroid / unable to respond to the resulting low T4 levels , then you wouldn't expect to see those fluctuations from hypo/hyper/ hypo..... and also, you would not expect it to be as 'high' as nearly 3 now.
Probably your TSH will continue to get higher in time if your fT4 continues to be this low , but right now they should be taking your below range fT4 levels into consideration too.. especially since they know you have history of a previous hyper episode .. it is known that periods of hyperthyroidism can down regulate the TSH , so it might seem to be stuck a bit low, and not always go back to quite the same level it's previous setting.
and also (even though i don't think it's your problem) there is always the potential for missing pituitary issues if just TSH is tested.. so with a below range fT4 the GP should definitely be asking for TSH AND fT4 to be tested.
Lots off GP's will not be vary aware of central hypothyroidism as they think it's vanishingly rare, and their guidelines and lab budgets do push them into just testing TSH ,and not testing FT4 unless TSH is over range..... so you may have to insist/educate/ keep pointing out your unusually low fT4 level to get them to pay attention.
TSH also responds to fT3 levels and your fT3 is currently fairly good, so this may also explain why your TSH isn't higher yet.
The thyroid compensates for low T4 levels for as long as it can by increasing the amounts of T3 it makes. but if ongoing autoimmune damage to the thyroid is the cause of the low T4 , it can't keep this compensation up forever.
The way to find out if autoimmune damage is the cause of your low T4 is to get the GP to test for thyroid autoantibodies TPOab (Thyroid Peroxisdase antibodies ) ... some people with autoimmune hypo only have raised TGab and not TPOab, but since the NHS won't test those ones ask then to check your TPOab first.
Sorry ...this turned into a waffle and i can't remember where i was going with it cos the rugby came on .... hope it's of some help
Good advice - I'd put money on your antibodies being high, which explains the fluctuations - and you can see you have below-range free T4, which shows you aren't making enough thyroid hormone, regardless of what TSH shows
But it's also worth noting that TSH (which is the most important result for too many GPs) fluctuates quite a lot during the course of the day - so it's important ALWAYS to have an early morning (no later than 9am) fasting blood test, in which TSH will be much higher than say mid-afternoon x
Strongly recommend getting full thyroid and vitamin testing done
Likely low vitamin levels
Low vitamin levels tends to lower TSH, in effect hiding how hypothyroid you might be
When were vitamin D, folate, B12 and ferritin levels last tested
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
Recommended on here that all thyroid blood tests early morning, ideally before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
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