Over the phone appointments - TSH 2.0 on 100mg Propylthiouracil reduce to 50mg.

[Cookingongas4]

Hi after being on 100mg Propylthiouracil for just over 1 year (I reacted badly to Carbimazole prior to this with a horrendous rash), my endocrinologist has written to say my TSH is 2.0 and to reduce to 50mg per day for the next six weeks and have bloods taken again. I'm due a telephone appointment in early March is this normal practice now and should we have to get used to telephone appointments rather than face to face.

[PurpleNails Administrator]

Yes. Very much so. I had telephone appointments (even before covid) for between appointments. I preferred it as then I didn’t have inconvenience of traveling to hospital. When I did attend nurses did pre checks BP etc before appointment & blood test usually done week prior.

Doctors rarely need to examine you & are much more focused at computer screen as they show the results.

You may want to discuss a symptom with specialist but their only interest is having your results in range - everything else is unrelated no matter how classic a related symptom is it. Unfortunately the GP will blame any obviously unrelated issue to be discussed at next specialist appointment. It’s frustrating and causes delays but persistence it key.

A TSH of 2 definitely merits a reduction of PTU. were FT4 & FT3 tested? Dosage should be adjusted by Frees not TSH which is unreliable. They may be very low (hypo) if you TSH is showing lower than is should which often happens after being hyper.

[Valarian]

I’ve had phone appointments throughout the pandemic and they’ve been fine. The only thing I do miss is that they would share their graphs (on a screen) with me as with Graves’ medication, it’s as much about trends as individual values. It didn’t really matter as I always kept track of my results, but the graphs were interesting, and made it easy to understand why a particular change had been made (or not).

Six weeks before retesting after a significant change to medication is quite usual, to give your body time to settle down with the new dose

You should be having TSH, FT3 and FT4 tested every time - this isn’t typically the issue for people being treated for Graves’ that it is for those who are hypo. FT3 can sometimes be the last to come down into range, and the first to take off in the event of a relapse. The aim of antithyroid treatment is to keep you within the reference range, and ideally sufficiently below the top of the range for there to be a bit of headroom if your levels start to rise again.

Since the Graves’ makes it difficult to predict what the thyroid will do (unless you are on ‘block and replace’) it isn’t unusual to dip below the range. This is usually easily sorted by reducing antithyroids, but they are unlikely to stop them altogether until they are sure you have been in range and stable for a few months. This may take as little as twelve months, but 18 months isn’t unusual. (And quite a lot of people never reach the point where they can maintain thyroid levels without antithyroids or ‘definitive’ treatment ! Ie thyroidectomy or RAI).