Advice Needed

[Stephsteph]

I’ve had hypothyroidism for 20 years +, I take 200mcg Thyroxine and 60mcg Liothyronine and have for the 20 years since I was diagnosed. My blood test results have always been similar (usually towards the top of the range, but that’s my normal) Last years blood test was more mid range. I don’t have any results to hand. I’ve just had this years blood test, I haven’t had the results yet but tonight I had a phone call from a receptionist at my GP surgery saying she had been asked by my GP (a new one I’ve only ever spoken to once, never met him or had any thyroid dealings with him) to call and say that he had been recommended by endo screenology (her words she was repeating from him) that he had been advised I should make an appointment because I should stop all Thyroxine immediately. I don’t see how in less than a year I can have such wildly different results that it would mean an immediate stop of a medication I’ve taken for 20 years? I haven’t noticed any different symptoms and I’m definitely don’t have any hyper symptoms. I understand without results it’s difficult to say, but has anyone else had this or similar? Please advise as I don’t think this is right.

[Jazzw]

It’s going to be about the new GP having no idea about thyroid disease and the effect of treatment.

So. First step—you need those blood test results before you meet with them. They’re your results and you have every right to have a copy of them. We often advise here to ask the receptionist to print them off for you and if they ask why, you say, I want them for my personal records.

Next, if you’d like to, share them here and we’ll try to help with what to say.

I’d imagine they’re looking at a suppressed TSH (no surprise given your medication) and are wildly overreacting. Definitely don’t stop your meds!

[Stephsteph in reply to Jazzw]

Thank you for replying. My TSH was slightly out of range, but I understand the ranges were changed fairly recently. My old GP would ask my symptoms first and then look at blood results. Sadly he retired and this new one as you say has no clue about thyroid disease. I’ve asked for my results but they won’t give them to you or print them until you’ve spoken to a doctor.

[HandS in reply to Stephsteph]

They are misleading you. You are entitled to your results whether or not you have spoken to a doctor. The doctor usually wants to view them first.

What kind of doctor asks you stop a long standing medication without seeing you?

Screenology…….says it all.

So sorry you have to deal with such nonsense. You can’t just stop. Ask for detailed reasons - or an Endo referral?

I hope this is resolved for you soon.

[Stephsteph in reply to HandS]

Unfortunately the practices policy is not to give patients any results unless it’s from a doctor. The receptionists are (mostly) ok and I do feel for them, they’re trying to do a job and getting the brunt of the frustrations from the patients. I sent a message this morning asking for my results but the response was to book me an appointment for Monday. I’m going to make a complaint about the way this doctor sent the message. I’m going to say in that I’m allowed my results and they shouldn’t be refusing them. But this doctor should also consider that patients are people and not just a name on a screen, leaving a message like that causes stress, and I’ve got enough other stresses at the moment!

[HandS in reply to Stephsteph]

I hope he listens. And yes, it annoys me when senior people use others - happens all the time. Good luck for Monday

[JanePound]

I was in exactly the same situation last year. 25 years on extended release T3 and absolutely no clinical symptoms of being hyper - even bone density was good. New GP and I’m off to the endocrinologist. Off the T3 and now I’m on 125 mcg T4 and 20 mcg T3. Feel OK’ish but if they tinker further I’ll be seeing my sister’s private endocrinologist, who is happy to work WITH you. Good luck.

[HandS in reply to JanePound]

What a nightmare. We all have to navigate this nonsense - based on what? I hope you don’t have to suffer to maintain your wellbeing.

[Stephsteph in reply to JanePound]

That’s terrible. I honestly think some of these GP’s read a bit about a condition and think they know everything. They seem to forget that we are people and not just a name on a screen. It did make me laugh that he’d said stop the T4 and not even mentioned T3! I’ll also start thinking about a private endo if I don’t have any luck.

[Moremy]

hi all, I’ve got the NHS app that is linked to my GP surgery and hospital and I’m able to see my test results. Not being a health professional you might not understand the results but at least you have a visual to then monitor the next results against. Abbreviations are explained at the bottom of the results. I’m on heart meds that interfere with my pre existing hypothyroidism thyroid function so the GP should be seeing you and evaluating all medical aspects before making a decisions.

[serenfach]

You have a legal right to your records. In very exceptional circumstances your GP may feel that sharing information with a patient would cause them serious harm and, if so, it may be appropriate to withhold it. But to have the general rule is wrong and illegal. Ask to speak to the Practice Manager and if she/he refuses, take it up with your MP and your local medical board. Trust me, they will be furious!

I can bet your TSH is low, which it generally is if you take T3. Your GP does not understand this. If he says you must stop taking all the medicine, he should be struck off. You would become seriously, seriously ill. Remember he is there to advise you, not dictate, and you can refuse anything he suggests, If he gets pushy, just ask for a second opinion. That rattles them.

I hope it goes well on Monday, but if I were you, I would put off the appointment until you have the results. Then put the results on here and we can help further. Hug.