changing meds without discussion

[Simba53]

Hi. I have just had a blood test for what I thought was a follow up appointment with Endo. I phoned his secretary after the test only to be told that I wouldn’t get an appointment (too busy!) but that he would write to me and my GP. I had a Medichecks blood test a few weeks ago (results posted on here) so I know TSH is suppressed. I e-mailed his secretary yesterday saying that for the first time in two years I now feel well again - cholesterol has reduced, blood pressure under control, lost over a stone, more energy, anxiety reduced - so can he not mess about with my meds without at least discussing it with me. I’m pretty sure he won’t take any notice - he was very rude to me at my last appointment and doesn’t agree with prescribing 75 mcg levo, 15 mcg lio and that he would only prescribe for 8 weeks. I delayed the blood test because of it. Does anyone have any advice please on how I continue to get the meds that I need - I’d like to be ready for him and my GP when I collect my next prescription. Thank you.

[SlowDragon Administrator]

Refuse to reduce dose as you are finally feeling much better

Retest again in another 2-3 months

Point out you’re also working on improving low folate levels

[Simba53 in reply to SlowDragon]

Hi. Thank you for your prompt reply. If he writes to my GP and changes my prescription I won’t have enough Levo/Lio to carry on with what I’m currently taking.

[SlowDragon Administrator in reply to Simba53]

If Endo says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

do you wear a fitness watch. Demonstrate your pulse is not too high with digital record of resting heart rate

[Simba53 in reply to SlowDragon]

Hi. Thank you for that - that’s brilliant. I’ll send that to the Endo if he messes with my prescription. It’s great to have just in case. Thanks again

[TiggerMe in reply to Simba53]

Can you put in for an early repeat prescription... holiday plans? Before the letter arrives to give you a buffer if you have to lock horns with them 😉

[TiggerMe]

Your fT3/4 are both within range so just refuse any reduction... this is what I did and managed to hang on to my current script with a below range TSH, I think a note was added that the patient was "willing to risk the consequences of a suppressed TSH as felt well!"

So they can't be blamed for trying to scare the 💩 out of you and failing 😁

[Simba53 in reply to TiggerMe]

Hi. Thanks for your reply. I told him at my last consultation that I’m prepared to risk the consequences. However as this time I’m not having a consultation - he’s looking at my blood tests and making a decision - I won’t get a chance to argue my case. I’m feeling very frustrated!

[TiggerMe in reply to Simba53]

My change of dose came from my Endo via my GP and I refused so they left it alone 🤷‍♀️

[Simba53 in reply to TiggerMe]

Oh really. That’s interesting. I’m ready for a fight so hopefully my prescription will stay the same.

[HealthStarDust]

“If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L.”

Section 4.3 Persistently raised TSH levels despite established levothyroxine monotherapy in Use of liothyronine (T3) in hypothyroidism: Joint British Thyroid Association/Society for endocrinology consensus statement onlinelibrary.wiley.com/doi...

Refer them to the above as these are form the latest consensus statement. Good luck!

[Simba53 in reply to HealthStarDust]

Hi thank you for your reply. Unfortunately st my last (private) blood test TSH was 0.01 - hence the problem with my argument to stay on combination T4/T3 at current levels.

[SlowDragon Administrator in reply to Simba53]

My TSH has been 0.01 since starting T3…..but both Ft4 and Ft3 within range

If I reduce levothyroxine (or T3) slightly and wait 12 weeks then retest …..TSH creeps up to 0.02 …..but I cease to function

[Simba53 in reply to SlowDragon]

hi. Thank you for that. That’s really interesting. I definitely don’t want a change in meds because, like you, I know I’ll start feeling unwell again. At least I feel ready for to face him now. Thanks again for your comments.

[Hidden in reply to Simba53]

The reason for his on,y prescribing for 8 weeks would be to evaluate your progress. If you feel better I can’t see how he would even consider reducing your dose.

[Simba53 in reply to Hidden]

Thank you for your comment. He was very cross at my last phone consultation - felt he was looking for an excuse to reduce my meds. I’ll keep everything crossed that he doesn’t change my prescription! Thanks again.

[Hidden in reply to Simba53]

You’ve got to be more assertive than that 😉. It’s sad but true that if you don’t fight your corner your health will always be at the mercy of these people.

[Simba53 in reply to Hidden]

So true. I’ll get my fight on when when I know what I’m up against. Thanks again. This forum is invaluable.