My latest email regarding my test results (I don’t have the full online results yet it takes a while for my GP surgery to upload them) this is direct from hospital.
I actually haven’t increased to 15mg (which I’ve replied back to her) I’m still on 10mg carbimazole. I feel like rubbish. I just don’t think I need to be on this much (I know it is a low dose!)
I have a GP appointment on Friday to ask whether I was tested for Graves along the way and I just can’t see the result (despite me having a letter saying I don’t have Graves but have symptoms consistent with Graves so are treating it as such) and next endocrine is September where I will ask for Graves test specifically if Gp confirms no record of it.
The results below mean nothing to me! So any feedback gratefully received on what it means!! I am considered as having an over active thyroid with symptoms “consistent with Graves”
TSH 0.22, Free T4 13.8.
TSH level has improved. A letter will follow.
Please continue 15mg Carbimazole.
Written by
Kelz21
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In which case, you probably have Hashi's! Has no-one thought of that? Tested your TPO antibodies?
I have never heard anything so lame! You don't have Grave's but have symptoms of Grave's and so we're treating it as Grave's. What they should be doing is finding why you have symptoms of Grave's - by which, presumably, they mean symptoms of hyperthyroidism. And, the obvious explanation is Hashi's.
Drained? So like foggy headed I can’t think straight some days, feels like sometimes I’m not really here. And just exhausted, but I do work long hours and travel for work so it could be unrelated to carbimazole in fairness
With results like you have listed above you do not need any more carbimazole. Your T4 is already at the bottom of the range. And your T3 is within range. Odd that it’s at the top and T4 is at the bottom is that correct? Have they tried taking you off carbimazole to see what happens? They shouldn’t be assessing your need for carbimazole by TSH. It can take ages to come up after being suppressed for a long period. In some people it never comes up again!
I’ve been on carbimazole for a suppressed TH for 3 years now and it’s never ever made any difference!
I have asked to reduce then come off to see what happens but they said I will become very ill and instead I need to consider the iodine treatment or removal! They are against reducing meds?! It’s extremely odd!
When I have my bloods done via GP it always comes back “normal no action” (as I’m guessing the ranges are normal) but they don’t seem to think so!
This problem was initially found whilst investigating stomach issues I was having and when it was discovered I didn’t start carbimazole for years! I was unmedicated and fine. But 3 years ago they insisted I had to start as my levels were worse (even though I felt fine! And had put on weight which I think is difficult for someone suffering with overactive thyroid?!)
That’s ridiculous. You really need to see someone else. You could have gone into remission (if indeed you do have graves). Taking you off carbimazole to see what happens is a perfectly reasonable and normal approach. Get a second opinion.
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
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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
Essential to test TSI or TRab antibodies to confirm Graves' disease
Private testing for suspected Graves - TSI or TRab antibodies
Thank you for these! The prices aren’t actually as bad as I thought they would be! I have contacted them to see which they advise first, or whether they think I should just opt for two of the tests (one to check the meds effectiveness and one to check the graves status etc) as I couldn’t see both under one test.
They took me off my vitamin supplements as my B12 was too high?! My husband was confused by that as he said surely if any vitamin is too high the body will just get rid of it, but I don’t really know how that works and did as I was told!
Some vitamins are expelled in your urine if you don't need them but vitamin D isn't and it can become toxic if you take too much. For example my Ferritin is 300 which is double what it should be. I am not taking any tablets now and it is high because I have inflammation in my body because my CRP is 9.
B12 is always high when supplementing or having B12 injections. It's not a problem, it's water soluble and excess is got rid of in urine
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
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and it’s never ever made any difference! 
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