Sticky Blood-Hughes Syndrome Support

Confusing Thyroid results

I was treated for Graves 5 years before my APS diagnosis. The radiologist and endocrinologist treating me decided to calculate out a dose of RAI to destroy just part of the thyroid so I would still manufacture some hormone on my own. My understanding is that most docs just kill the thyroid and get on with the replacement meds. I did start taking levothyroxine a few years ago.

Now, after 15 years I have a prominent visible lump on my throat and the sensation of an obstruction when I swallow. An xray swallow study with contrast showed no obstruction, but definitely weak esophageal swallowing muscles.

My doc ordered a T3, results 62 (76-81) My TSH is always on the lowest end of normal. He reported to me that everything is totally normal and there is nothing to be done.

Can someone help me understand all of this?

Thanks, Mair

4 Replies

Great he did T3, however, unfortunately in the world of Thyroid testing, it helps to also go our own way with this, it is very annoying to have to pay for private testing, this is what I do, and I am also an online member of Thyroid UK on here and also a paid up member of their very hard working charity. These are the tests I do, which of course does include reverse T3 alongside all the others. They also recommend the most economical testing facilities and also alternative medication to Levo thyroxine which is on a named patient basis only, plus some people do a genetic test which is a D102 test, your GP can order and I also believe their my be an online test kits, this shows the patients who do not adequately convert T4 to T3 and end up not at an optimal level on their medication.

To be clear thyroid testing in the UK is very poor, not much beyond the TSH test which is highly unreliable, and even if doctors order the tests below the labs refuse to do them or are not set up to do them.





I think Mary had a typo - it is a DIO2 defective gene - which I have. It will mean any tests you have done will not necessarily show accurate results as you will need more T3 due to your in ability to convert the T4 to T3 in the cells if you have it. As to your visible lump - does it move when you swallow? Look in the mirror when you do it. If it does my advice to you is you need to get an Endo willing to listen to you. I have a good one in London if you want to PM me but private and recommended by Prof Hughes.


Hi Mair,

Is Warfarin still your best friend? It is for me and I am on an INR of 3.5 - 4.0. I am 72 and selftest like you do. What is your therapeutic level?

Have you got an APS Specialist now? Important to have one to care for you and who udnerstands what you tell him etc.

I can tell you I was operated for Hyperparatyreodosis in 2006.

Best wishes from Kerstin in Stockholm


Thank you for your helpful comments. I'll have to look up the info on the DI02 gene. That's a mystery to me. I'm in the US so will need to look for a local endo referral.

Kerstin, yes, warfarin has been my good friend for 17 years now. My rheumatologist reduced my INR target from 3.5 - 4 down to 2.5 - 3.5 but I don't usually let it go below 3.0.

A story: I've been self testing every week for nearly 15 years and mostly self-dosing. Our clinic system INR nurses finally caught up with me, apparently unaware of my existence even though they always renew my warfarin prescriptions. I tried to explain about my coaguchek but they were so confused by the entire concept of self-testing that they said now I have to physically bring my coaguchek into the clinic once a month so they can read the INR for themselves, and they don't trust me to read the numbers to them! I'm hoping they'll get tired of that time-wasting routine quickly and let me report my INRs by phone.


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