A question for Hyperthyroid & Graves's Disease Members

[efilwol]

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

Thanks

[Merkaba]

January 2010 first diagnosed hyper:-

TSH - 0.09 (Range 0.1 - 4.0)

FT4 - 21.2 (Range 8 - 20)

Isis x

[efilwol in reply to Merkaba]

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)

[Merkaba in reply to efilwol]

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.

Isis x

[spacecadet]

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.

[efilwol in reply to spacecadet]

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.

[greenginger]

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.

[efilwol in reply to greenginger]

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.

[greenginger]

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??

[efilwol in reply to greenginger]

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.

[efilwol in reply to greenginger]

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?

[greenginger]

Hi thanks I am due another appointment any time. If I get no joy I will do as you suggest thankyou.