Sticky Blood-Hughes Syndrome Support
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Thyroid Tests

I have been trying for years to get my Thyroid tested more thoroughly and Prof Hughes agrees that this would be worthwhile. My APS consultant at Ninewells in Dundee tried his best but only to be told by Endocrinologist my TSH and T4 are okay so no need to look further. I have a new GP who is very helpful and now reading all the books/info I have given her on Hughes Syndrome. She knows how difficult it is to get further Thyroid testing but is willing to pursue this with 'hand written' letters to strengthen my case. Can anyone advise me what tests I should ask for? I have Sjogren's, Hypothyroidism and Hughes. I currently take 75mg of Levothyronine (T4) and 10mg of Liothyronine (T3)

9 Replies

Hi AvsG,

Last time you told us that you had to wait till you were under an INR of 2.0 before you should take a Fragminshot. Hope they have changed that to 3.0 and upper your therapeutic range also a bit. If you are not at a special range you can feel awful.

A Specialist of APS should know what tests you need according to your symptoms and earlier results.

Best wishes from Kerstin in Stockholm


Thanks for your reply Kerstin. I saw Prof Hughes in September and he has written to my Doctor who is now agreeing to me using Fragmin when INR is below 3.0 :-)





HI, I encourage any of our members who think they have a Thyroid problem to join Thyroid UK on this platform, their forum is very well run, and their actual charity pages carry very good advice and information. Certainly beyond the TSH test it is important to test your T3 and Reverse T3, also to regularly test your levels of B12, Ferritin and D. There is a terrible problem with testing in the UK, even if GP's request T3 tests labs do not do it. For my own needs I did some of the private tests recommended by TUK which showed up my serious problem, which otherwise would have been dismissed as 'Fibro'. I take natural desiccated thyroid, this is rarely prescribed but some are successful but it is on a named patient basis only. I am monitored on this, Levo does not work for everybody, and Thyroid UK are fighting for change regarding this. It would be worth directing your questions to Thyroid UK as there may be people who know of places where succesfully the NHS does get the relevant tests done. I enclose TUK as a link, the charity, and you can have the same user name for their forum on here.



Thank you Mary, Your comments have been very helpful and I will follow your advice :-)


As a fellow sufferer of multiple conditions, one being autoimmune thyroid disease I know what you are going through and how difficult it is. I cant get my head round how a GP can ask a lab for tests and the lab can refuse to do them! You may well have to pay for the tests to be done privately, which is not on but somehow the only way forward. My GP constantly asks for the Thyroglobulin antibody test only to have it refused because they say its only indicated in Thyroid cancer but mine are constantly and consistently raised! They just want to do the TPO antibody test which is normally normal. The other way is to see a private endo the next time you come down to see PH. Let me know if you want to chose that option and I will PM you with the Endo PH sent me to in London who is very accommodating.

Tests you would need would be FT4 and FT3 plus the two Thyroid antibodies.


Thank you for this information. I saw Prof Hughe a couple of months ago and I wish I got them done privately then. Sometimes I get so tired fighting my corner!




I had to get a full thyroid scan privately, Genova Diagnostics offer this service. You request a test kit from them, get your GP's phlebotomist to take the blood nd then send the test kit back to Genova, with the fee. They will then send you a very detailed and clearly set out set of results.

I hope this helps.


1 like

Thank you Dave, I will certainly go down this route if my GP's efforts are ignored,



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