Problems getting American liothyronine prescriptions

I thought I'd update my previous posts. I saw my gp two and a half weeks ago to ask him to provide me with a prescription for American 10mg liothyronine capsules.

Since the formula of the mixer has changed with UK lio tablets, I can't tolerate them. They make me extremely ill. I ache all over, increased appetite, very tired etc etc. But the worst part is my eyes become really dry and really sore. I've tried three different kinds of drops and they really sting and hurt when I put them in my eyes. My vision quickly deteriorates and is very blurred.

My gp initially said he would look into how to write a named patient prescription for me and would get back to me in, " a day or two." A week later when I finally managed to speak to him again. He told me he would not issue me a prescription. He wants me to see a consultant at our local hospital, and for him to monitor my transition to the new tablets. I do not understand this at all. It's changing from 1 x 20 mg liothyronine tablet per day to 2 x 10mg liothyronine capsules a day!!! Where's the change? Doctor says there could be different absorption rates. He told me that no other doctor from the surgery would issue me a prescription either. He also stated that the practice manager had instructed him not to issue me a prescription. I can not move to another surgery as I live in a village and no other surgeries will accept us.

He said he would get me a very urgent appointment immediately. Another week went by and I contacted the hospital to find out about appointment. Doctor's letter had got lost. New letter sent. I was then tri-aged as non- urgent. Waiting list is 4 to 6 months but in reality it will be six months.

I got back in touch with doctor. He said he would contact the hospital and get my status changed to very urgent. I would have an appointment this week.

I got a telephone call on tuesday morning from the surgery, checking that I was available for an appointment any time this week. I thought it was the doctor's secretary. She told me she had just phoned the hospital to try and get me an urgent appointment for this week. She was told because my status is non-urgent she could not book me an appointment. She told me my doctor would phone hospital on Wednesday morning and get my status changed and my appointment this week. He'd call me when it's booked. ( Doctor does not work Tuesday's )

I heard nothing yesterday, so phoned doctor lunchtime. I was told there is no record of anyone telephoning me on Tuesday so I could not have had a call from anyone at the surgery. I was told that the doctor has written me quite a long letter, which is awaiting his signature. When pushed for it's content,

I was told that doctor could not get me an appointment at present - consultant will be happy to see me sometime in the future though. Urgent patients are seen in 4 - 6 weeks most likely 6 weeks. I'm still waiting on letter. Again when pushed, I was told I could collect it rather than wait for post.

I then decided I would pay to see the consultant privately. It's £200. I rang the same consultant that my doctor was trying to get me an urgent appointment with on the NHS. The secretary said she had to speak to consultant before I could book appointment. She did call me back. She said I would have to send her a referral letter, then the consultant would decide IF he would see me. When pushed for a date, she told me, " we are not an emergency service, you can't come to us just to be seen quickly."

I am not often speechless, I was this time. I only contacted this consultant because he already knew my circumstance as my gp had spoken to him.

I run out of my current batch of liothyronine on Wednesday. I collect my new prescription tomorrow. It will almost certainly be the same batch as made me so ill last month. There is a very small chance it will be a different batch, but even if it is, it will probably have been made since the formula changed. It will make me very ill again. My doctor says I just have to decide whether I am most ill by taking the tablets I'm allergic to or by stopping the tablets altogether!!!!

I saw a consultant last August, who told me that I had symptoms of both Hypo and Hyper thyroidism and that it would be extremely dangerous for me to reduce my medication.

What can I do? I'm so tired - I haven't slept properly for weeks and the stress is unbearable. I can no longer think straight.

I'm sorry this is so long - but it helps to be able to vent.

7 Replies

  • Dizzy864, I can only suggest you source your own T3 online without prescription to see whether your can find a T3 which suits you better than Mercury Pharma T3. PM me if you need sources.

  • I see looking at your other posts that you've looked at sourcing other T3's before but want to avoid gelatin as you're veggie, so that rules out cytomel. Not sure about the exipients in Cynomel. Think there's a German T3 brand too.

    Have you tried NDT? Are you still on 100mcg of Levo and 60mcg of Lio a day (it's not clear from your post above)?

  • Hi,

    Thank you all so much for your replies. They are really appreciated.

    I have been on the same meds since 2007. I take 3 x 20mg lio plus 100mg levo taken at night.

    I have now got the letter from my doctor - it's worse than I feared it might be.

    He states that he talked on the phone with a consultant from my local hospital (Lincoln). He advised very strongly against prescribing me American liothyronine. He said the strengths vary widely from batch to batch.

    He said, that he would see me in the future. The letter doesn't mention a time scale but I think the implication is that it will be a non urgent appointment in six months.

    My gp then advised me, in the mean time to continue with UK liothyronine even though it makes me very ill. He said if I wanted, he will refer me for cognitive behavioral therapy which will help me cope with the symptoms and continuing ill health. There is absolutely no way, I can put up with the side affects for six or more months or even a few weeks. So far, I've only taken these tablets for up to ten days and I've become unbearable to live with!!! My very sore eyes affect every thing I try to do. My blurred vision stops me reading, crafting or watching television. It causes severe and constant head ache, which affects concentration and memory. It is also extremely painful when I close my eyes so I can't get to sleep and lay awake for many hours.

    The "long" letter turned out to be barely half a page. It offered no suggestions or help with treatment for my thyroid problem.

    I am absolutely disgusted with my gp and the NHS. I really thought there had been a lot of progress since I was diagnose almost twenty years ago. It seems to me that things are as bad as back then.

    I tried to book an appointment this afternoon with another private consultant, but the secretary had gone home early.

    I'm now wondering if I would be better booking an appointment with a consultant well out of my area. I'm now worried that the policy in my area is to refuse foreign medications. I really don't want to pay £200 to be told I can't have a prescription for American liothyronine because that is local policy.

    I am aware of the MHRA guidelines. Unfortunately, they only state that a GP MAY prescribe foreign alternatives and not that a GP must prescribe. I'm convinced that I fit the criteria. I don't know how to enforce the guidelines.

    Tomorrow, I'm going to order some liothyronine from somewhere in Europe, where I don't need a prescription. It's less than ideal because it either means increasing my dose from 60mg a day to 75mg or reducing to 50mg, which I can't then take in three even doses, which I know works best for me. I don't have any other choice, I really can't tolerate pharma lio. I'm really worried what it would do to my body if I continue to take it. Symptoms are a warning that something is wrong. I don't believe they should be ignored.

    The American lio would mean taking the same dose as presentl Pharma lio is allowed to be 90% to 110% of it's stated dose, I can't believe that American lio can vary any more than that. It seems to me to be the most sensible option to me.

    Am I correct, that there is no way of buying American lio without a prescription?

    Does any one know a good consultant within a day's travel of Lincoln that is likely to recommend I have a prescription for American Liothyronine?

    Thanks so much for your help.

  • Hello, It looks like you're overmedicated(too much t3). How looks like your fT3 & fT4 analysis?

  • As I posted before I have symptoms of over med and severe under med. Complete hair loss in places. Loss of outer eye brows. Weight gain etc.

    Consultant told me it would be extremely dangerous for me to reduce meds while I have so many severe under med symptoms. He was not able to tell me what caused this to happen.

    I had a lot of stress for a couple of years. Then just as I got over it, I ve had constant stress with all my lio problems. I blame this for my mixed symptoms.

  • Maybe he listened to the Debate about T3 with Professor Dayan and Dr Weetman. 80% of attendees agreed with Dr W.

  • Hi,

    i would like to thank all of the many people that PM ed me. I really appreciate all the help everyone has given me.

    I am still investigating purchasing lio , but I do have concerns about the change in strength and the change I would have to make to how I take it. I was really shocked by the price of American lio. I would not purchase Pharma lio, which does restrict my options.

    I have replied to my GP's letter. His reason for refusing my prescription made no sense. He stated that the two hormones in lio are out of balance in the American formula. No idea what he means so I've asked him to explain. I've also asked him to reconsider his decision as I will not continue to take Pharma lio.

    I have done more research on my options as purchasing lio is only a temporary option for me.

    I believe I have discovered why I've been refused. I was told that the practice manager had forbidden my GP to issue me a prescription. This made no sense to me as the practice manager has no medical qualifications.

    I have discovered that health authorities are moving more and more drugs on to a "red list". GP's are not allowed to prescribe any drugs from this list. They must be requested to do so by a consultant. The list was originally intended for drugs of a questionable or unsafe nature. It's now being used for drugs that are considered by the health authority as too costly.

    The MHRA guidelines makes no mention of the red list. As I believe I qualify for a prescription under, "special needs", I'm looking into what I can do to enforce my right to a prescription, if my GP still refuses to issue it.

    I have also booked an appointment with a consultant in another health authority who I hope will be helpful. It suddenly occurred to me that when I saw a consultant a few months ago, I was told I should have a follow up appointment. I'd never been contacted about this. It's now booked. Unfortunately, I can't be seen for five weeks but have been told I can phone and ask for a cancellation every couple of weeks. So fingers crossed it won't be too long.

    Thanks again to all the nice people that contacted me.

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