So after agreeing (reluctantly) with gp that he would provide another prescription but unless I saw the endo, that would be the last one, I collected my prescription today and stupidly didn’t check it.
Opened it tonight and no T3, levo only which I didn’t even ask for. I am beyond raging. And typically I have no T3 left. Every month I go and get my script with a few days left of tablets but as we were away last week I collected it today, with my last tablet being tonight.
I’m off to the surgery in the morning to kick up a stink. How dare he just decide what he thinks is best? We agreed I’d see the endo but I needed enough tablets to tide me over until then. It’s obvious he doesn’t care how ill I’ll feel in a few days time.
Just when I think i got my dose spot on as well. Gutted.
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Murphysmum
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Just tell him you both agreed that you would see an endocrinologist before a decision was made but that he has stopped your T3 before you consulted with the Endo. Maybe he'll then prescribe T3.
If he disagrees, then you can tell him you'll be contacting your MP as you've had your life-giving hormone removed without your approval.
I wish some of these GPs who decide that people who need T3 should not have it would get thyroid disease themselves. Perhaps then they would have a better understanding of how not having adequate T3 in your blood can feel! I would go to your local newspaper and tell them what your GP has done if he refuses to give you a prescription.
That’s outrageous! I’m pretty sure the guidance is that those prescribed T3 should have or reviewed properly and he’s agreed to an endo doing that (who unfortunately may stop it), but a GP can’t just leave you with nothing! Would he stop giving a diabetic insulin? Make sure you take a copy of the guidance with you. It’s been posted on this site several times. I’ve found this that may help.
No one should stop you getting t3 and any attempt to help you investigate whether YOU could choose to stop it should be properly trialled under clinical supervision over at least 6-12 weeks with blood tests every 3 weeks and a daily symptom diary. Arbitrarily stopping treatment is disability discrimination, as bad as any. And the final say should be yours. Make a complaint via PALS then the health services ombudsman if the complaint response is unsatisfactory. In the short term contact the GP practice manager tell them what you will do in response to this and that they must reinstate your prescription and then you could consider an alternative GP. Failing all that get some t3 online and temporarily increase t4 until you can re-establish your usual healthy replacement regime. As I have suggested this may be more a matter of disability discrimination as medical negligence, because while the clinical criteria and scientific data can be argued both ways what can’t be argued is the disability you feel without adequate thyroid hormone and that not producing sufficient endogenous t3 is a disability that exogenous t4 cannot always correct (and seldom does, except that some people can manage on lower ft3 from higher ft4 and some can’t - whatever none of it is physiologically normal!) so the issue is not just your TFTs it’s how you feel. GPs seem to forget they are private contractors to the NHS and taxpayer funded and that unless they have evidence a prescription is doing harm they should meet the needs of the patient first and then deal with the budgetary issues second. Patients have for too long been subservient to self important GPs who often know very little about managing hypothyroid conditions, only we really know and it takes years of experience living it to know.
I had the same issue with my GP.He stopped prescribing my T3 and said he didn't know much about it.When I said to him that it was the active hormone which governs our metabolism,he told me he didn't need a lecture and not to argue with him !! I feel that I don't want to go to him any more.
My Endo is now issuing my T3 having been told what happened and I now have to make the 16 mile round trip every 2 months to collect it from the hospital pharmacy.......nearly 79years old !! I forgot to ask what happens for people who don't drive.......
It's disgusting! I feel for you and everyone else who has to deal with this situation.
The good news is that my Endo promptly doubled my dosage.!!
PS if you are struggling on levothyroxine without your usual t3 in the short term you could try splitting your levothyroxine dose into at least 2, one before bed the other on waking, which may ameliorate any limitations on t4 - t3 conversion caused by unphysiologically high levels of t4 from larger single doses of levothyroxine. (High t4 is a negative feedback loop for t3 conversion).
Thanks for this interesting emergency plan. I was just considering how I would handle a hospital stay if I caught THE virus ( and had to deal with ignorant staff who tried to prevent my taking my privately obtained T3).
Well, that turned out to be easier than anticipated but nonetheless very annoying.
I went into the surgery all geared up to fight my corner and was met by the friendly receptionist who said “oh, no problem”, picked off the repeat script request off the printer and popped in to get a gp to sign it. Clearly not the gp I had spoken to!
Legged it along to the pharmacy, who have previously questioned how often I request repeats, who accepted it with no questions.
Only issue is I won’t get it until tomorrow afternoon.
Thank you @hashihousman for your advice, its also occurred to me what would I do if stuck, so that’s really useful. However, I have 20mcg left. I would normally take 25 am and another 20mcg pm.... what do I do? Take it normally tonight and miss tomorrow am, or take a split dose tonight and tomorrow am??
I have an endo appointment now for next Monday so assuming she agrees I’m well and increases my script accordingly, hopefully this’ll be the last issue I have 🤞🏻!
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