I've been having blood tests on and off for about 2 years regarding my thyroid as I kept complaining of tiredness. 2 years ago my TSH levels were about 6.5 and my T4 was about 17, and I had negative antibodies. I've had about four other blood tests since then, with my TSH level fluctuating between 6.5 and 11. Right now my TSH is 10.99 and my T4 is 17, and I do feel tired, but I don't think I have any other symptoms. The doctor said the blood test two years ago showed I had negative antibodies (she didn't seem to want to retest it) which meant I was unlikely to develop full blown hypothyroidism, yet still offered me a microdose trial of thyroxine for 3 months. She said she didn't know if it would help me or not, but I could always try it... I declined for the time being as if she doesn't know, I don't know!
However, if my TSH has fluctuated down to 6-ish before, is thyroxine really necessary?
Additionally, I do have a fast heartbeat already, I'm underweight, have hypermobile joints syndrome and have anxiety so I'm a bit concerned about all the horror stories I've heard regarding mixing these symptoms/conditions and thyroxine!
Has anyone had similar blood test results as me and did the thyroxine help or hinder you? I'm just a bit lost and confused about it all!
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melissa-b
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Oh, another doctor talking donkey donuts! You don't have to have high antibodies to be hypo! There are all sorts of things that can cause your thyroid to stop working, not just autoimmune diseases.
A TSH of 10.99 is high. But can't tell about the FT4 because you haven't given a range. As for symptoms, there are over 300 of them, so you probably have some that you don't even associate with your thyroid.
She said she didn't know if it would help me or not, but I could always try it... I declined for the time being as if she doesn't know, I don't know!
Oh, very much not so! An awful lot of patients know far more about thyroid than their doctors. Maybe not you, but please don't assume that your doctor knows anything. She's already proved her ignorance with her remark about antibodies. And, to be honest, a trial of three months on a 'microdose' (whatever that is) of levo is unlikely to help very much, and could even make you worse, giving her the opportunity to say 'I told you so!'. Levo should be started at 50 mcg - unless you are very old or have a heart condition - and increased by 25 mcg every 6 weeks until the TSH is down to 1 or under, and you are well.
Is it possible for you to see another doctor that might have a bit more knowledge of thyroid?
Sorry I left out the range - my T4 is 17.4 pmol/L and the range is 12 - 22 pmol/L, so quite normal it seems - the doctor also said I wouldn't show any symptoms if my T4 was in the normal range (not sure if this is true or not)
Also, it seems on my patient record they were going to give me 25 micrograms of levothyroxine sodium - never knew it should be started higher, interesting to keep in mind if I have any more success with doctor appointments in the future!
I am going to the hospital at some point as I've been referred for hypermobile joints syndrome, and my doctor suggested asking there about my thyroid (although I'm seeing a rheumatologist so not too sure what she means haha). Apart from that, I find it to be very hard getting an appointment at my local surgery in general, let alone seeing a doctor with more knowledge about thyroids (I know the one I saw is actually the dermatologist - I checked and they don't have anyone with an interest in endocrinology at my surgery)
I think I will wait and see if the rheumatologist is kind enough to send me to an endocrinologist as I believe they do blood tests at the hospital to rule out other conditions which may cause tiredness etc. Thank you again for your help, this whole thing is incredibly confusing to me!!
the doctor also said I wouldn't show any symptoms if my T4 was in the normal range
Oh dear. She is ignorant. T4 is a storage hormone. It might cause some symptoms if it isn't optimal - which isn't at all the same thing as being 'in-range' - but the active hormone, that causes all sorts of symptoms if it's too high or too low, is T3. But, I very much doubt she would test it because I doubt she knows what it is!
Your FT4 is mid-range, which is fine for some people, but not for everybody. But, your TSH is 10.99, which suggests to me that you're not converting much of that T4 to T3. So, if your rheumatologist does do thyroid testing, suggest to him that he would do best to test the FT3, because that's the most important number.
Thank you so much, you've been very helpful! I will ask the rheumatologist and in the meantime, I'm going to switch GP surgeries as they've been consistently poor (also have a 1/5 star rating), and hopefully I will get better treatment at the other one. Thanks again and hope all is well with you!
I think I will wait and see if the rheumatologist is kind enough to send me to an endocrinologist as I believe they do blood tests at the hospital to rule out other conditions which may cause tiredness etc.
Although one department in a hospital can refer a patient to another department and this was done in years gone by, I don't think that is ever done nowadays. Referrals cost money. So hospital doctors from department X will refer the patient back to the GP and suggest to the GP that they refer the patient to department Y. The cost of the referral comes out of the GP's budget not the hospital's budget. I only found this out very recently from something I read on the Pulse website.
This is why medicine is not a smooth process. You sit on one waiting list to see someone in department A. Then the GP is asked to refer patient to department B (another waiting list). Then the GP is asked to refer to department C (another waiting list). It could take years to have a complicated problem assessed, diagnosed and treated. What tends to happen is that patients die, or give up hope, or go private, or the patient gets lost and ends up being discharged for some unknown reason, and then they have to start the process all over again, and sit on a waiting list for a few months.
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 Thyroid antibodies are raised
All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
I had a relatively normal TSH but with terrible fatigue. No-one tested my T3, the active hormone. It wasn't till I'd started self treating with Natural thyroid that it became clear that my problem was to do with conversion from T4 to T3. So my T4 was sky high, but I didn't have enough T3 to function!
Sadly the NHS was and is useless, so we are very much alone. Read and learn on this board, especially from HumanBean and Grey Goose, and then get yourself privately tested.
And yes, you need treatment, but without proper testing you won't know what with.
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