Endo recommendation Tunbridge Wells

[Mifford]

Hi everyone. My first post for many years so I’m now very out of date on everything as I’ve been happily ticking along for ages taking a combination of thyroxine and T3 and keeping my TSH levels quite low. I’ve recently been referred back to endo to confirm the T3 prescription and for some adrenal tests - I also have lupus and various joint problems and may have been over prescribed steroid injections.

I have had a short synacthen test that shows my adrenal glands functioned when stimulated but my DHEAS level when I checked it with Medichecks was virtually non existent and I’ve had low testosterone in the past. My thyroid has suddenly decided to go hyper the last year as well - my TSH levels were far too low last year fitting symptoms of hyperthyroid but my old gp didn’t tell me and the results didn’t show up in my online info 🤦‍♀️. My new gp has lowered my thyroxine dose but it didn’t have a significant impact so we’ve lowered it again about 6 weeks ago and I’m just waiting for my latest check to come back. I have hashis so know it’s prone to going up and down but this is the longest it’s persisted in staying hyper.

Anyway to cut a long story short I think I have been lumped with a locum endocrinologist and 6 weeks after my synacthen test I had to chase the results, discovered that he has no allocated secretary so all of his typing is behind and still have no follow up appointment set or any indication whether there will even be one. I think there may be some pituatry issue going on … I had a massive boost from the synacthen test that lasted about 5 days as if d been given steroids so I suspect I can produce ACTH but that unless stimulated I’m not. My cortisol level had a baseline of around 320 for the test but I think this is misleading due to the steroids and can’t be relied upon. When I was first diagnosed with my thyroid my TSH was always “nornal” but it only showed it’s true reading once I was tried on medication - my TSH Went up rather than down once it stopped masking it and I suspect this could be the same that the test is being masked by my body working overtime to maintain the level.

Based on my experience of locum consultants with rheumatology which ties in with the delay and lack of any information about what happens next I’m going to try and get PALS involved to switch me to a different list. I used to be with Dr Barnes who was amazing but unfortunately is now only private and I have no experience with anyone else. I know it can’t be discussed openly but does anyone have any experience the endocrinologists in Tunbridge Wells or Maidstone hospitals that can give me feedback on who’s any good and who to avoid?

Many thanks in advance . Oh and any major updates in treatment over the last 10 years I should know about or is still combined T3 and thyroxine still my best option? I know that could be a long answer but I’m hoping to avoid a week of looking on here for everything that’s changed so pointers would be good lol