Advice please

When i went to collect my last t3 prescription i was told it was no longee available at gp. Phoned endo who told me the same. Was given liquid thyroxin. Previously used thyroxin also tried ndt. 2weeks later had endo app. Was feeling awful. Endo appologised to me she had looked into prescribing me t3 and because u am intolerant to all forms of t4 she was missinformed and IS able to prescribe me t3 and was so sorry for putting me in this situation. She gave me a prescription request form to take to gp which i took straight away and gave to receptionist explaining to her. Today 2 days on i phoned to see if it was ready i am now feeling pretty ill hav no meds. Was put on to speak to gp he told me he has no such form or request there is nothing on computer i told him it was left with recetionist. He went to look for it called me back and said it was not there. Explained and asked if he would give me a prescrition as i hav nothing. Refused saying he needs to see the form. I told him i have a copy and he said i have to take it down and speak to medcine management. I think he was fobbing me off and not going to give me a prescription. Long way round just wonderd if anyone knew if endo says and i am intolerant to all other treatments should he prescribe it. Not certain as brain now going dead but sure endo said central governing body funding it. I could really do without this stress my tsh 133 range up to 9 t3 0.3 range 3 to sumthing cant remember t4 sorry forgot to ask for print out x

51 Replies

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  • Maybe should have said been on t3 only for a few years

  • I think your best bet might be a and e as soon as you can. Take a copy of the endo letter with you and insist they do something. Meanwhile, arm yourself with a back up of t3. You can import your own, its not stupidly expensive. You definitely dont want to be in this situation again.

    With a Tsh of 133 you are in a perilous situation which needs sorting out quickly,

    Xx. G

  • Have had to take morning off work made an appointment to see him at 10.20. But not sure what my rights are. X

  • You have a tsh of 133 and you are still managing to work!! 🙀 You're tougher than you think you are. 💪💪

    Xx

  • I do push myself. 2 jobs shopwrk and homecare (bank). But finding it tough to say the least.. Once finished wrk and sit down thats it at the mo i dont move. X

  • galathea is right. I'd follow her suggestion as you must feel absolutely awful with a TSH of 133. Instant medical action is required for you to get T3.

  • I'm not surprised you forgot to ask for a print-out. I think everyone would when put through an enormous strain without adequate hormone replacements.

    I feel sure your doctor is fobbing you off as he has had a directive that no T3 is now to be prescribed. Quite a few of our members have been notified that T3 will no longer be prescribed but as you are intolerant to any other alternatives, I'd tell him that I was going to see my MP as you have been put in an intolerable situation as only liothyronine (T3) will improve your health and prevent other negative possibilities arising.

  • When i was with endo yesterday she told me she looked into it cant remember who she said she spoke with but because i have tried and am intolerant to all forms of t4 i can be prescribed t3. Do you think this applies to gp .

  • Doctor has obviously avoided the subject but if he has been directed by higher authorities than the Endocrinologist that no T3 (liothyronine) is to be prescribed I suppose he is safeguarding himself.

    Definitely go to the A&E and say your GP will not prescribe and give your copy from Endo as hopefully there will be some sensible person who will respond to your request and that you know for sure you are sensitive to all other forms of thyroid hormone replacement. Don't beat about the bush - everything is affected in our body. My heart is always the first to be affected with the wrong hormone (for me).

  • On the prescription request form endo gave me for gp it does say in the diagnoses part intolerant to all forms if t4 and names them.x

  • Even better - so A&E should supply you with some T3 to tide you over and I hope they phone the GP about not prescribing and causing a patient to go to A&E particularly with such a very high TSH plus the strain of all this tooing and froing causing immense stress on top of it :)

  • I'm sure you don't want an extra thing to do but after you get your meds I'd write to the practice manager. This is awful.

  • Lol the practice manager is my own doctor x

  • So who would handle complaints about him? This sounds very odd. When you get back your health, look up the complaints procedure for your surgery.

  • Yes how odd, galathea do you wonder if this person is also collecting two salaries? Usually (as far as I'm aware) princessze, the pm is not a doctor but a layperson, like you'd have in any other office.

  • Maybe i have got that wrong. Its just what i overheard while i was there yesterday handing form in another patient asked the receptionist that very question and she said my doctor.

  • Do you live alone, princessze? Or with partner? Parents?

    You really need someone to be fighting this fight on your behalf.

  • I am 53 and sadly single. My son 30 does live with me but has his own health issues diabetes an nerve damage

  • I think you need to go to A&E. Please don't drive, take a taxi. If you are struggling to walk and think you should call an ambulance. With a TSH of 133 you are risking a condition called myxoedema coma which is extremely dangerous and is life-threatening.

    Do you have multiple copies of that T3 prescription request you got from your endo?

    Whatever happens you MUST NOT lose that. But if you have another copy or can make another copy do take it with you.

    If you have a useful friend who can go with you it would help.

    You don't actually have to be in a coma to be diagnosed with myxoedema coma.

    medicinenet.com/myxedema_co...

    nhs.uk/Conditions/Thyroid-u...

  • . My mam will come with me she is eighty but pretty fit. Well fitter than me at the moment.

    I only have one copy just now will get my son onto the technical side and get more but not letting it out of sight

  • Looked at link. Scarey my eyes are starting to look puffy now. Will keep a check on myself x

  • Whatever you do take another copy of the copy incase that goes missing. No wonder you feel awful. This is absolutely disgusting! Tell them if you end up in hospital due to them refusing to prescribe. You will take legal action for negligence. Sometimes you have to get the claws out to get these people to listen. They don't care how ill you are they are just thinking of saving money.

  • Thankyou for your replies i will let you know what the out come is. Xx

  • The doc may be wriggling about because of price..... Its been very expensive, at one point getting up to around £300 a month, but the latest edition of the British National Formulary shows the uk stuff is £150 a month. It mentions that liothyronine sourced from abroad may be slightly different in dosage, but doesnt say it cannot be prescribed. ( its cheaper).

    Here is the info from the bnf.... (The doctors prescribing bible).... evidence.nhs.uk/formulary/b...

    -----------------------------

    Liothyronine sodium (Non-proprietary) Prescription only medicine

    Tablets, scored, liothyronine sodium 20 micrograms, net price 28-tab pack = £152.18

    Important

    Patients switched to a different brand should be monitored (particularly if pregnant or if heart disease present) as brands without a UK licence may not be bioequivalent and dose adjustment may be necessary; pregnant women or those with heart disease should undergo an early review of thyroid status, and other patients should have thyroid function assessed if experiencing a significant change in symptoms. If liothyronine is continued long-term, thyroid function tests should be repeated 1–2 months after any change in brand.

    Injection, powder for reconstitution, liothyronine sodium, net price 20-microgram vial = £22.50

    ----------------------------------

    X

  • Interesting how the price is dropping now they are getting less custom! Normally in that case you would expect it to rise! Just goes to prove they were greedy and it's back fired and knowing how slowly the NHS will be to reverse their decision then it could drop even further! I wish somewhere else though would apply for a license and really get the price down further.

  • In answer to your main question: yes, he has to prescribe.

  • Are you sure about this Schenks? My endo recommended T3, wrote to the surgery, my GP wrote a prescription and a senior GP snatched it back, needless to say I am battling this.

  • Yes, I am sure. If an endo orders it because you cannot take anything else, a GP cannot refuse. If they do and you become ill, you have a malpractice case.

  • Good luck. Im not very good at this sort of thing. But with support from people in here i managed. Not easy when feeling rubbish. But if i can do it so can you. Dont give up x

  • british-thyroid-association...

    We wish to emphasise that the decision to continue or stop L-T3 should be based on clinical need above other considerations and that the BTA position statement should in no way be used as an endorsement for discontinuing L-T3.

  • You are very right in that clincal needs over-ride everything else.

  • shaws what worries me about 'clinical need' is that 1) they seem to have no idea how to define clinical need, ie even if you can get them to test t3 they wouldn't know a conversion problem from a hole in the head and 2) what about those of us whose 'clinical need' can only be demonstrated by relief of symptoms?

    My tests have never shown any conversion problem and yet when I am on levo I am swollen, constipated, exhausted, weepy and balding. On t3 most of that fully resolved, incl demonstrable things like a full head of hair, my bowels working well for the first time since diagnosis and the shoes and clothes I bought on levo now being far too big. So I know this is not the placebo effect (I can't grow hair w the healing power of my mind) but I wouldn't expect any of that to cut any ice on the basis of clinical need.

    Just because the current testing regimen doesn't reflect our clinical need doesn't mean it exists, but how to we prove it should our meds be taken away?

  • I think we'll just have to lie outside the BTA and RCoP and let them guess how best to kill or cure us :)

    Will probably be told we're mentally ill, just like many others who are diagnosed with mental health issue and never had their T3 levels checked I should imagine.

    Maybe we should have someone video us when very unwell and on levothyroxine and when up and about and in good T3 health.

    I haven't looked back at my blood tests but the cardiologist was puzzled about constant palps (120+ ). I keep meaning to write that I've not had any since on T3 only and I must do so.

  • P.S. I should also mention to him that I was discharged from the A&E cardiology as 'Probably viral with high cholesterol' when my TSH was 100!

  • I believe that when we say we are unwell and have a myriad of symptoms on levo that we are disbelieved due to the fact that our bloods 'fit' in the normal range. The BTA seem to disagree wholeheartedly that the TSH and T4 are the only tests of priority.

  • l am new to this and many members know more, but l find our Path Labs ignore even Dr requests for T3 as its so expensive to prescribe (£300 for 2 months) tho cheap to produce. You can complain/appeal to Practice Manager and local Clinical Commissioning Group. Also gather drs are checked on for the total cost of prescriptions they write. And l understand from here that many buy their own from abroad, and more comments on last week's Trust me l'm a Doctor. Obviously your case is serious

  • Doctors have to prescribe on clinical need, so if the labs do not do the tests that show there is a clinical need then the doctors have a get out for not prescribing it. I recently saw an NHS endo because my doctor was unsure whether she should still be prescribing T3. He did every test imaginable but refused to order a T3 test (which is the test that would show I needed it). I even showed him a copy of a letter the previous endo sent to my GP to say I needed the T3 (why she started prescribing it) but that was dismissed. A bit like Nelson(?) covering his good eye and saying he sees no ships.

  • Yes thanks, l well realise what is going on - and am prepared for battle if it becomes necessary. lts hard to take in that so many GPs are either nasty or incompetent etc

  • I think i have been quite fortunate during this whole saga. While i was unmedicated i went to nurse at gp to be tested usually they would only alow tsh test but when i requested t3 and t4 she said that i could have tested whatever i want. She was new. Also my endo has been great and done the chasing around for me to get to the bottom if it all. Her job i suppose. And appologised saying she was missinformed and the whole situation should not have happened.

  • Just to update you on the outcome of my predicament. My brain not working too good so i will put it across best i can.

    Entered dotors room his first question was have i brought a copy of request form before i got sat down. Looked at it and said i wont be prescribing this i have a letter saying i can no longer prescribe it. I told him i know all this but there is no alternative medication for me and explained the endo has looked into it and whoever she spoke to said i should not hav had it removed and should continue in it and if he phones her will be get the full info. His reponse was to get defensive saying he will show me his letter about not prescribing it as i obviously doubt him and question what he says. I said this isnt the case but proceeded to put his letter on screen turn it to me saying thats my letter. I really didnt need an argument. I asked again if he would b prescribing liothyronin for me and if not what as my doctor would he recomend i do. He said he dint know.

    I said in that case i will b going to a and e as i am now and will b left unmedicated. He told me that would do me no good. I told him i would probably end up there anyway left unmedicated. He agreed to give me 28 tablets on prescription 9 days to tide me over give me time to sort it out.

    I questioned where my white form from the hospital had gone and wasnt happy the practice had lost it. He took a copy of mine saying he woyld loik into it.

    He then got the medicin management lady to speak with me. She listened emailed my endo which is all i asked of the doctor as i knew she would explain the correct situation. Instead he was defensive and not very nice sorry cant think of words i want. But stressed me out upset me and not once did he enquire about my health or wellbeing.

    Anyway i was home not 5mins the medicine management phoned me. My endo had phoned her and m.m. told me my gp from now on WILL be prescribing me liothyronine on repeat it will not stop. Also they have miraculously found my white form apparantly by the scanner. And gave me HER appologise for any inconvenience.

    Hope u follwed

    Xx

    I

  • What a palaver! I'm glad you have been promised prescriptions from now on. But this situation should never have arisen at all.

    If your GP had issues with the prescription request he should have taken them up with the endo. You aren't responsible for the endo's actions.

    Hopefully you will get back to normal soon. Good luck. :)

  • Talk about stress - do we need to be qualified as a medical lawyer in order to get what we need to live and function. It is the 'Battle of Thyroid Hormones' I believe. It's well seen they have no knowledge of how important replacement hormones are.

  • I think your right. Luckily I still had some fight left in me not to let this situation lay, much to the amazement of my endo who couldn't understand how I was managing to even function

  • Good for you. Glad that is all cleared up.

    Without wishing to give you extra work :-) you may want to ask her to put in writing what she has told you (might ask endo to do the same) and send a copy to you and put one in your file. Just so you have proof should there be a personnel change.

  • A big thank you for all your support. I was at a point where i was scared worried as i was starting to feel the worst ever feared what would happen if it carried on and on. Im not one for admiting im not well or not coping not till im deserate.

    When i start to feel better i will look into complaining this has been a nightmare.

    Again thanks xxx.

  • Oh thank goodness you got that sorted. What i would do, if i was you... In fact what i did when on t3, was buy a pack or two of it from abroad, so that if the prescriptions were stopped or delayed, i would still be ok.

    Presciptions can stop when doctors retire, or new directives are issued, or the surgery gets a new budget manager, . Or the supply can dry up, or you might want to go on holiday but they wont give an extra prescription to last you on hols.... Believe me, it can be anything. It made me much more confident knowing i had a supply ready if i needed it.

    Xx. G

  • Good call I wil definitely be looking into that ☺

  • Can you recommend the best place to get it xx

  • I am sorry that you have been put through all this. I am intolerant to t4 and my NHS Endo prescribes t3. After intial problems my GP prescribes it now. I last saw my Endo on 31/1/17 and he said that they are being told not to prescribe it anymore but the people who are on it already they have to give it. He also said some gps are refusing and then the endos are having to get it from the hospital pharmacies for them. He said that it is all down to cost and a MP has taken up the case and they are working to try to resolve this. I have intolerant to thyroxine across my notes and on my endos letters. In his latest letter it looks like he is making sure he justifies my using it by giving details of what symptoms have improved and noting that I have no symptoms of over replacement. I am grateful to still be allowed to have it. I was bedbound before. I don't feel it is fair to others though who are denied. I hope they can sort it out soon. It is a good idea as others have suggested to get some extra supplies as not long ago I had problems with the chemist not being able to source any due to supply problems. I got advice and help from this site telling me to try the hospital pharmacy which worked. Hope you don't have anymore problems and are feeling better :)

  • Hi there

    I realize I am replying to a very old Post - of more than a month ago, but I have been reading all the threads relating to the topic of intolerance to Levothyroxine. Can you clarify what symptoms are present/are experienced which evidences the intolerance? I would be really grateful. Its just that I am on 175 Levo and still feeling dreadful. My GP has referred me to an Endocrinologist and appointment is Friday. I am wondering if I am intolerant too?

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