A question for Hyperthyroid & Graves's Disease Members
What were your levels when you were diagnosed?
My test at diagnosis was
TSH - undetectable/less that 0.01
Free T4 - 39.2
Thyroid Antibodies - 193
January 2010 first diagnosed hyper:-
TSH - 0.09 (Range 0.1 - 4.0)
FT4 - 21.2 (Range 8 - 20)
Gee you were caught very early/on the borderline. What were the symptoms that lead you to be tested for thyroid (if you don't mind me asking)
Borderline but symptoms horrific and absolutely exhausted for months with severe swollen inflamed throat plus a myriad of dreadful symptoms. GP ignored symptoms, did not test thyroid and was rude and insulting. I was a new patient at this Practice so I also saw the Nurse who arranged the usual routine blood tests which showed hyper and I was later diagnosed with autoimmune thyroiditis with high TPO antibodies.
I was diagnosed in December 2010.
My TSH was 0.05
My T4 was 81! (Range 9-23)
Never knew my T3 at this stage.
I was on carbimazole until June 2012 & came off them (my T4 had come down to 17). For one reason or another, I didn't get back to see the consultant until December 2012 by which time my T4 had increased to 31, (can't remember the T3 & (TSH always remained the same) so back on carb for several years as have small kids so can't have RI treatment.
Thanks for that. I wonder how high T4 can get? I am not really experiencing any new symptoms aside from rapid pulse (the high BP I have had for years).
I am not keen on RAI or thyroidectomy myself.
Hi diagnosed May 2011.
TSH was 0.085 (range 0.1 - 4.0)
T4 was was in the 50's (range 9 - 23).
Still waiting for my antibodies to be tested and my neck to be scanned.
Had T3 done a few times before carbimazole kicked in and then they refuse to do T3. It was around 3 or 4 though I think.
There seems to be a lot of variation in people's experiences of NHS testing (I am assuming you are an NHS patient)
My antibodies have been tested twice now since summer 2012 as a way to determine Graves' vs. nodules or other physical cause within the thyroid itself. My endo prefers blood testing to scans etc.
You are right. My GP has washed her hands of me and says its the endos job. The endos ( plural) that I have seen are blooming useless. The last one I have seen several times and she is pathetic. Asks me how I feel then when I tell her she states that its in my head and that my bloods are fine ( I am carbimazole) and therefore take no interest or notice. Last time I went I refused to answer questions and walked out of the appointment. I am still awaiting antibodies test, promised one last year. Also GP told me I needed a scan but guess what? yep still waiting. I do take my meds but I am disgusted by the NHS and endos in general. As for blood tests what do they prove if you are on meds??
I have only seen one endo so far and she seemed OK, but it's early days. She palpated by thyroid and says I have a smooth goitre (I can feel it myself). Based on to TPOs she diagnosed Grave's.
The blood tests (I presume) are to demonstrate whether or not the carbinmazole is working. I am taking a low dose (the endo agreed to try it out) and eating copious amounts of goiterogens to see if that makes any impact.
As I said, it is early days for me. I got a letter from the endo today summarizing our appt and I plan on writing back to her with a few questions, specifically about the variability of my tests.
My experience of the NHS so far has been excellent - my GP referred me to an endocrinologist straight away and when I said I wanted private tests (because I want to check more often than every 6 weeks) she agreed to monthly testing for me. Lucky for me my local hospital is UCLH which (in my experience) has always been very good, I suspect as it is a teaching hospital. It has the highest doctor to patient ration in the country (or used to have).
Hope things inprove for you.
P.S. - I am sure this has been suggested before, but have you tried your local PALS about the difficulties you have encountered getting scans & tests?
Hi thanks I am due another appointment any time. If I get no joy I will do as you suggest thankyou.
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