So after a really bad endo appointment i was prescribed liquid levoroxine this appointment was on aug 3rd, I waited till yesterday to contact my surgery to see if the prescription had arrived, was told no prescription was showing as being sent from the endocrinologist. I was told to ring the endo department up, no response from the endocrinologist department its either a message or it rings no one answering, I rang my gp today after many failed calls to the endo department, they could not help only giving me a direct number to endo department, 🤦♀️I've rang and again got the message "no one here to take your call" I've got 5 days of T4 left😤 which i explain to the endo, 🤔 is the nhs working at all? 😤
Again im left with no medication, I will be forced to re fill the t4 prescription even tho its giving me bad side effects.. on 25mg ( by doctors advice) until i get on liquid levoroxine 🤦♀️ I honestly want to go away and die... I'm just so sick of how the nhs are conducting themselves and making patients lives a misery 😩😩😩
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birkie
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Why are you on 25mcg levo? I was on that once. Didn't do a thing for me.
I once had so much difficulty trying to get through to adult audiology (they gave my child an adult appointment instead of to the children's section) at my hospital I went into my doctors surgery (had to make a whole appointment) and the GP got the receptionist to handle the call for me. I went home and got a call back from the department the next day.
Mine is complicated, first I was on T4 after thyroidectomy in 2019, after suffering with bowle/stomach problems I found out it contains lactose ( I'm lactose intolorent and have colitis) took off put on T4 teva which after same bowle/stomach problems this T4 contained mannitol a filler giving me the same problems, put on T3 all bloods were going in the right direction, got to good levels, no bowle problems, then I became ill, started with constant urinating then server thirst, bad bone pain with bone vibration, bad headaches, sweating went up, had body shaking, fast heartbeat, I looked at my thyroid levels they were OK not over medicated, my calcium was over range twice, gp sent them to endo got a letter from 2 endocrinologist saying I probably have primary hyperparathyroidism!then after one normal blood test ( was not normal) they discharged me.. Then gp jumped on my T3 as the cause of my symptoms, i was decrease on T3 from 40mg to 30mg..i went hypo.. I'd had enough and came off T3 just to show the gp it was not the t3.. Could only go bk on T4 which I have bad side effects to, this was only soupose to be for 7 weeks, gp would not put me bk on T3 until I saw endo and she decrease me from 50mg to 25mg due to side effects, still waiting on liquid levothyroxin from endo.. 😠😠😠
Blimey, you've been put through the wringer. It's terrible. You know you can write a letter of complaint? I did it once and was given an apology by whoever led the audiology department.
What's your GP's problem? Virtually no one with autoimmune thyroiditis benefits from 25mcg. You usually see people stuck wasting away on 50mcg or 75mcg at least.
Why do people think T3 is so dangerous? I don't understand why your GP is wasting everyone's time (and money) sending you back for another appointment with an endo to re-establish T3 when you had it ok'd before and were doing well on it. How much is all that costing? More than several months worth of T3 prescription I bet.
When I saw the endo I told her my symptoms are not due to T3.. 1, I'm not over medicated 2, my TSH is 0.05 but I've no thiyroid so this is OK.. I got a diagnosis of primary hyperparathiyroidism in 2020 all symptoms point to this.. But endo discharged me, so gp jumped on the T3.. The T3 did give me a very bad metallic taste but apart from that my bloods were OK..the symptoms and me feeling awful are due to phpt Due to high over range calcium I vomit so at some point I'm sure I was vomiting the meds bk.. Going to see a surgeon privately as I can't stand the constant trips to the toilet especially at night, and the server feeling of dehydration my pth/calcium bloods are all over the place, 🤦♀️but endo just put me on liquid levoroxine saying all my symptoms would go.. 😂
The Endo wouldn't send a prescription. He would write what he recommends your GP to prescribe in his clinic letter, which can take a few months if they are snowed under.
Also, liquid Levo is very expensive, so your GP might have to have a meeting to discuss if they will prescribe it.
Have you tried the lactose free brands now available? I don't mean Teva.
Understand that it's a letter, but she wouldn't be writing it out by hand getting a stamp and posting it😂 it's all done by computer now the pressing of a button, also my endocrinologist prescribed T3 I got that within 3 days of speaking to the endocrinologist, although it took 4 weeks for the pharmacy to aquifer it, I assumed it will be the same with the liquid levothyroxin 🤷♀️.. Its lactose free but contains mannitol another filler, because of my bowle/stomach problems and my awful thyroid level she recommended I go on liquid levothyroxin as it would be more gentle on my stomach /bowles and I will absorb it better.
Honestly I've had clinic letters take 3-4 months+ at times although that was a particularly bad admin department. 3 - 6 weeks is probably average and maybe you got lucky with 3 days. I do have one amazing consultant that mails me out special meds from their hospital pharmacy that arrive within days.
Anyways, just write to them and let them know where you're at. Fingers crossed for you.
Writing a letter is an option, but seeing as I've written one in Feb for lack of care, receiving no reply, sent an email to practice manager in March about my endocrinologist appointment being to far away ( 3rd Aug) and asking if it could be brought forward as the medication I'm on is effecting me, no response, I then sent a letter(recorded delivery) at the end of May to head of practice, no response again, so if I send another letter will they ignore it as they have the other correspondence I've sent🤷♀️ I honestly don't know what their doing at my surgery, surely they should at least try to reply to letters sent to them by patients?
I will try the endocrinologist dep again tomorrow, if I get nowhere I will do a letter (not holding out they will reply) but then I think I will need to get pALS involved, it's no wonder I'm not recovering my thyroid hormones when the gp/endocrinologist keep you waiting on meds and then you still have to wait to get it from the pharmacy 😠
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