Private Endocrinologist in Edinburgh?

[Pinkroses]

Hi. Quick update. Went to my GP with results of my private medicheck thyroid tests today (test results and ranges at bottom of post). My GP basically said that it could be that my thyroid is on its way to becoming hypo but he would not give me medication as it could put me the other way and to wait until my TSH level is really high. When I told him how frustrated I was with living with these symptoms he eventually agreed to send me to an endocrinologist. The NHS appointment would take around 9 months apparently so I asked for the referral to go the private Nuffield Spire Hospital in Edinburgh.

This will be expensive and I don't want to spend lots of money for the endo just to say the same thing as my GP. Has anyone got any experience of the endocrinologist's in Edinburgh.

I am thinking of self medicating and monitoring the results myself through Medichecks instead?

TSH 4.6 (0.27 - 4.20)

TT4 90.1 (59-154)

FT4 13.8 (12-22)

FT3 4.32 (3.1-6.8)

TGAB 55 (0-115)

TPOAB 176 (0-34iu/ml)

Any help is appreciated. I have already started a gluten free diet and trying to optimise my vitamin levels. Thanks

[Hidden]

I saw Dr Toft last year in Edinburgh when my rheumatic disease was still unacknowledged and I was trying to get to the bottom of my symptoms. He was great - agreed that my Hashis was not optimally treated and I started T3. But then my GPs threw a wobbly about my suppressed TSH and weren't happy to keep prescribing T3 so referred me to NHS endo as I had requested they do. Ended up stopping T3 because of palpitations and only saw Dr Toft once more when he reduced my Levo dosage to keep GPs happy. That made me feel really awful.

Fortunately the NHS endo was happy to hike my dose of Levothyroxine right up if I came off T3. All good for me as was rediagnosed on the same day with Sjögren's.

Dr Toft was worth his weight in gold for me in forcing my GP to refer me to NHS Endo.

If it's him you are seeing then I found him very kind and helpful and I hope he agrees to let you start Levothyroxine and not leave you waiting miserably for TSH to go up.

[Pinkroses in reply to Hidden]

Thanks for your reply. That helps a lot. It would probably be Dr Toft that I would see. It sounds as though Dr Toft's treatment was not quite right though and the NHS endo diagnosed you correctly or have I read that wrong? My GP was going to refer me to an NHS endo but I did not want to wait until next year before the apt would likely come through so asked for a private referral instead. Did your NHS endo appointment take a long time to come through?

When you saw Dr Toft privately did you have to pay for the T3 that he prescribed or did your GP prescribe it for you through the NHS.

[Hidden in reply to Pinkroses]

Well to be fair Dr Toft was treating me despite me already having been diagnosed and treated for Hashis for 15 years. And I had already been under rheumatology and neurology in three hospitals so my history was complex. He believes in T3 where my NHS endo does not and seems to think that Dr Toft puts everyone on T3 because "that's just his thing"!

So Dr Toft felt T3 might help me feel better although he was sure too that I had a rheumatic disease underlying. I had already been treated for RA for five years but had been undiagnosed when I relocated. So he was really helpful to talk it all through with and gave me great advice overall. He wrote to my GP instructing T3 and they couldn't really say no. So they prescribed it and paid for it until my TSH went down too far for their comfort and they then referred me to NHS endo - as no other GP surgery had been willing to do. It took about 2 months I think so I carried on with T3 for then and relocated again so new GPs but same hospital. Hope this explains. I really liked Dr Toft but all I actually needed was a proper raise in my T4. Still do but GPs are innately panicky about low TSH!

So the NHS endo was better for me personally - but if Dr Toft at least gets you started that would be something while you wait for NHS endo? I would keep the NHS referral but make your own appointment to see Dr Toft asap. Once you've had a trial of Levo then it would be hard for NHS endo to stop it?

[Pinkroses in reply to Hidden]

Thanks. I will make the appointment today. Frustrated at my symptoms so would be great to get the ball rolling.

[Clutter]

Pinkroses,

If your TSH is above the range your GP practice uses your GP should prescribe Levothyroxine in the presence of thyroid antibodies. Waiting for TSH to go >10 only applies when the patient is asymptomatic. Read Dr. Toft's comments in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

[Pinkroses in reply to Clutter]

Thanks. I had read that article and mentioned to the doctor that I believed I should have a trial due to the antibodies, my test results and my symptoms but he said it may push me the other way. I was just thinking well not if you monitored my levels and started me on a small dose and carefully increased it until my symptoms were gone and levels were appropriate. I didn't push it further, as I got the referral and it was clear he did not fully understand thyroid issues other than TSH levels. My doctors is a one man surgery currently staffed by locums. I have now made a private appointment with Dr Toft in a couple of weeks. Not sure about Dr Toft given some of his written statements and what seems like contradictory opinions of his. It will cost a lot but I will see how I go.