My GP and Endo keep saying my thyroid is well within normal limits however they only ever check T4 and TSH. I had Graves for six months around 4 years ago which corrected itself without treatment. Since then I have been suffering with every symptom of underactive thyroid imaginable so I went private and asked for my Total T3 levels to be checked. This came back as 1.1 when the range is between 1.3 and 3.1 however, my GP says they do not prescribe T3 and it wouldn't make any difference anyway. Is this correct? My TSH was 1.55 (range 0.27 - 4.2) and T4 was 12.4 (range 12.0 - 22.0). I also have Type 1 diabetes and high cortisol levels.
Any advice gratefully received.
Thank you
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TraceyD333
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The high hormone levels that come with Graves' can down-regulate the hypothalamic pituitary thyroid axis - in simple terms the pituitary starts to put out less TSH which leads to low fT3, fT4 levels. Ideally, if you can get TSH, fT3 and fT4 measured to see if both fT3 and fT4 are low or low normal. If this is so insist your GP refers you to an endocrinologist to check for central hypothyroidism which is when the pituitary doesn't produce enough TSH.
Your total T3 was low and fT4 low normal, borderline low. This suggests central hypothyroidism but your case history (Graves') suggests it is probably due to a down-regulated axis rather than a damaged pituitary. If you can afford it I would get a private home blood test done thyroiduk.org/help-and-supp... . I have used the Monitor My Health one as it is the cheapest and done by an NHS lab. You will then have evidence you can give to your GP and push for a referral.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid. Hashimoto’s is frequently misdiagnosed as Graves’ disease
Ask GP to test vitamin levels and thyroid antibodies
Or get FULL testing privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Apologies, I should have mentioned, the ACTH was fully suppressed after overnight dexamethasone suppression test. My Endo said my thyroid levels are "completely normal" and I have now been asked to do a 3 day urinal cortisol collection and a repeat CK after stopping the statin for 2 weeks. He has also asked me to do a further 48 hour low dose dexamethasone (500 mg every 6 hours) suppression test with bloods before and after. He did not say anything at all about the gastric parietal antibodies positive test other than to confirm they were positive. All of these tests have resulted from me asking my GP why my resting heart rate had dropped from 82 bpm down to 54 over a one month period. It has now increased back up to 75 bpm and I am no longer short of breath. He states in the follow up letter to my GP that my iron and Vitamin B12 levels are normal. I am so confused! Thank you for taking the time to reply. I thought by going private it would bring some clarity but it just seems to be confusing me more and my GP has said that she is not a specialist so cannot comment.
Hi I struggled to read the cortisol - what time was it done & was it following the Dexamethasone test? It could possibly be a pituitary issue if you are having trouble with your thyroid as well. Let me know the answer & I'll see if i can help.
So the result of 81nmol/Ls means that you didn't suppress, ie the Dexamethasone did not lower your cortisol levels, which ideally it should have done. It suggests that you may have Cushing's syndrome & is why your Endo is doing further tests. This may account why you are having issues with your thyroid, how long have you been diabetic? It often goes a long with Cushing's? If you are on Facebook then there is a group called Cushing's UK where we can give you more information & support. It's also worth looking at the Pituitary Foundation website too.
How do you actually feel? I realise you said that you're experiencing lots of symptoms of underactive thyroid but can you be more specific?
With testing positive for gastric parietal antibodies it may also be useful for you to post or have a read around the PAS (Pernicious Anaemia Society) part of the Healthunlocked forum and also get advice from them.
I'm fairly new to all things thyroid and still trying to get a diagnosis myself; both these forums are excellent with very knowledgeable members that will help and guide you.
Hi and thank you for your response. I think my symptoms are pretty typical ie fatigue and general lethargy, brain fog, weight gain despite following a strict 1250 calorie low carb diet, aching muscles and joints, dry and scaly skin on shins, feeling very cold, dry and thinning hair, low body temperature (generally around 36.4 C), and numb fingers on waking. This has gradually been getting worse but because it's so generalised and my thyroid tests are apparently normal, the GP and Endo insist it's not thyroid related.
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