I am new to this site but would really appreciate your advice.
I have been on levothyroxine 100mcg and Liothyronine 10mcg for about 5 years.
I have always been slightly over treated but I have been left to it as symptomatically I am better, almost normal.
My wonderful GP has gone and two months ago I received a letter from a GP I have never met advising the Liothyronine is a red light drug and will not be prescribed without a Consultant. I have been under a consultant for endocrinology and weight management (most recently in 2013 throughout my second pregnancy)and they were fine with my treatment and signed me off.
I am now on the 'lets increase your thyroxine) treadmill again, feel awful, hair loss, joint pain, hand a foot pain, breathless and I have gained a stone and frankly I am miserable.
I can't get anybody to listen to me and they certainly don't seem to of read my notes.
Can they do this??
i plan to have bloods this week, and see my GP next week.
I am so angry and I am considering complaining to the Practice Manager.
Has anyone else been though this.
Thank you for reading this.
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Written by
Swantaff
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Swantaff, this is awful for you. I would definitely complain to practice manager as the fact this med was prescribed by previous endo proves you obviously need it.
I haven't had experience of this so don't know if they are allowed to just stop meds but just wanted you to know I am appalled & rooting for you.
Practice manager can only help so much if nhs change guidelines ...do what I and many others do ..self medicate . .I know it's sad we have to do this but sometimes it's our only route left ...good luck
Just when you thought you had found an answer, it has been taken from you! I haven't tried T3 but lots of others on this forum have so someone will be able to advise you better.
It hasn't been stopped across Somerset it is up to the GP to prescribe or not. My husband still gets his T3 on an NHS px and GP is happy to keep prescribing even though his Endo has signed him off.
Swantaff, If your endo recommended the 10mcg T3 + Levothyroxine point out that it was recommended by a specialist x years ago and ask for the Liothyronine to be reinstated as soon as possible as you feel your health is suffering.
If you want to selfmedicate while you sort it out with your practice PM me and I'll send you online sources which don't require prescription.
Clutter, please could you also pm me details of online sources which don't require prescription. Think I am going to have a long journey back to wellness thanks to NHS cost cutting. It won't save them money when they get sued.
I think some health authorities are now compiling lists of drugs and classifying them. Without doubt liothyronine is being classed as 'Red' due to pressure from endocrinologists who want to retain their status and on cost grounds. It would help if you could ask for a copy of the notice that classed it as 'Red' and post a copy here. Your local health authority is classifying liothyronine as a drug that should not be prescribed by GPs, even if an endocrinologist recommends it. So it's important to get a copy of the notice from them and then do whatever you can to complain. I suggest that after the election you visit your MP and make them 100% aware of your problem (there are no MPs until after the election).
I suspect this is an issue we will have to take action on collectively. I've found one example of such a list elmmb.nhs.uk/formularies/jo... . Levothyroxine is classed as 'green' and liothyronine as 'red' and to be used only if you are in a coma! I suspect the alternative of self-medicating will not last long because if they get away with this action they will use the 'red' classification as an excuse to stop the importation of thyroid medications.
I know it's difficult for some of us but if you are affected by this latest scam you need to kick up a great deal of fuss. Note that it's not the poor GP's fault, it's the fault of the health authority. If we don't respond they will get away with it.
I also suggest anyone affected put in a request under the Freedom of Information Act to request all documents relating to the classification of liothyronine. This will allow you to target those who are trying to stop patients having liothyronine (and NDT which is classified as 'Black').
The CCG or whatever it is is now supposedly led by GP's and remember that they are virtually all self employed and and make money on top of the basic by acting on programmes for which the Government gives them a bonus.
No doubt what they save on drugs etc.benefits them
Thank you all for the fantastic information. It is a lot to take on and think about.
I am to get referred back to the endocrinologist.
I will explore whether I am deficient in certain vitamins and minerals which could be preventing the t4 to t3 conversion with my GP initially.
Once this has been exhausted and if I am symptomatic I will fight, regardless.
This has been a huge eye opener!!
I will keep you posted.
Any classification of unlicensed medicines by your local PCT/CCG is at their discretion and may take into consideration this and other information they may have available. Use of unlicensed medicines is on the direct personal responsibility of the prescriber.
Thank you humanbean, yes generic Liothyronine is licensed. I believe that there is only one generic liothyronine available in the UK--- 20mcg Liothyronine, manufactured by Amdipharm Mercury Company Ltd.
Unfortunately, many patients are unable to tolerate generic medicines:---
MHRA----Risk Hierarchy for the use of unlicensed medicines
An unlicensed product should not be used where a product available and licensed within the UK could be used to meet the patient's special need.
Although the MHRA does not recommend "off label" (outside of the licensed indications) use of products, if the UK licensed product can meet the clinical need, even "off-label", it should be used in preference to an unlicensed product. Licensed products available in the UK have been assessed for quality safety and efficacy. If used "off-label" some of this assessment may not apply, but much will still be valid. This is a better risk position than in the use of an un-assessed, unlicensed product. The fact that the intended use is outside of the licensed indications is therefore not a reason to use an unlicensed product. It should be understood that the prescriber’s responsibility and potential liability are increased when prescribing off-label.
If the UK product cannot meet the special need, then another (imported) medicinal product should be considered, which is licensed in the country of origin.
If none of these options will suffice, then a completely unlicensed product may have to be used, for example, UK manufactured "specials", which are made in GMP inspected facilities, but which are otherwise unassessed (GMP inspection of specials manufacturers is not product specific). There may also be other products available which are unlicensed in the country of origin.
The least acceptable products are those that are unlicensed in the country of origin, and which are not classed as medicines in the country of origin (but are in the UK). Hence, for example, the use of melatonin products from the USA, where melatonin products are classed as supplements, not pharmaceuticals and may not be made to expected standards of pharmaceutical GMP should be avoided whenever possible.
Since June 2014, notifications for the following products are on the MHRA database.
Proprietary Name
CYNOMEL TABLETS 25 MCG 1 X 30
CYTOMEL 25 MICROGRAMS ORAL TABLETS 1 X 100
CYTOMEL 25 MCG TABLETS 1 X 30
CYTOMEL TABLETS 5MCG 1X100
CYTOMEL TABLETS 5MCG 1X100
LIOTHYRONINE TABLETS/50 MICROGRAMS 1 X 100
LIOTHYRONINE TABLETS 5MCG 1 X 100
LIOTHYRONINE (PADDOCK) 5 MCG TABLETS 1 X 100
LIOTHYRONINE TABLETS / 5MCG 1 X 100 (TABLETS)
THYBON 20 HENNING 20 MCG TABLETS 1 X 50
TRIJODTHYRONIN TABLETS/0.025MG 1X30
Corresponding manufacturers --
SANOFI-AVENTIS
KING PHARMACEUTICALS
ACE PHARMACEUTICALS BV
PADDOCK LABORATORIES INC
KING PHARMACEUTICALS/MONARCH
PADDOCK LABORATORIES INC
SIGMA
PADDOCK LABORATORIES INC
METRICS INCORPORATED
SANOFI-AVENTIS DEUTSCHLAND GMBH
SANDOZ GMBH
Whether or not CCGs will permit these drugs to be prescribed is another matter.
After all, CCGs are supposed to be, answerable to 'us'.
Wen my doctor said he was stopping my Liothyronine I asked if it was on costs basis. ( I did this loudly in the reception so everyone could hear).... I asked the doctor to point out to the pct or whoever they are that I had been stable for 10 years on it..... Next day they re instated it. ( I don'T actually take it.. I don'T even take the prescriptions to the chemist..... One day I aim to hand the prescriptions back to the doctor and tell him I self medicate with N D T. :-). ).
Complain..... Write to your doctor, the practice manager, your local mp when you get one. And the pct....
This all so terrifying to read. Swantoff, I'm so sorry you feel unwell and are having to go through this stress. I'm with the others, if you were prescribed your T3 by an endo to make you well, which it so did, why would any medical person then take it away?? I really worry about the future for thyroid sufferers. Since being diagnosed, my eyes have been opened to so many goings on and it leaves me gob smacked. With a general election imminent, I have absolutely no idea who to vote for, my vote would be for the party that shows the most promise for the NHS but unfortunately I don't have faith in any of them. I fear we may lose the NHS and in some cases, a better system where we have more control over our health may not be a bad thing. I sincerely hope you manage to get sorted x
I too am having a similar issue, I have an endo confirmation and I was told the doctor is reviewing my medication, I had to go back to the private endo and get him to write again to my gp to get him to agree to keep me on it. The answer was that he was an english endo not a welsh one and I would have to see the welsh one. Absolute rubbish I am furious too. So I will continue to get my t3 from them for the next 6 months and will buy from abroad until such a time as I have to travel abroad to buy it.
I will not be forced into the dole queue by the nhs.
Hi everyone. Today I have written to the practice manager requesting written information as to why the stopped me, the clinical rational etcand. I tentatively wait.
I have actually spoken to my colleague in the hospital pharmacy who had no idea this was happening in somerset. He is going to investigate wether the hospital has been informed on the GP practice decision. He is going to actively investigate the impact this move will have on the already over stretched secondary healthcare.
In poke to my endo's secretary today. She has been consulted and a letter is due to be typed immenently. I must admit I am very anxious about the outcome.
I also emailed my GP to advise of the worsening symptoms and requested all my correspondence is added to my records.
I am soooo angry that GP are being given increasing powers and the outcome is this sort of treTment. It is appalling.
I refuse to pay for my treatment when I have been receiving it and keeping well for the past 5 years, pay my NI and taxes and have dedicated nearly 20years to the NHS.
Maybe you could copy and print this document and show your GP, I had a very enlarged thyroid for 18 years and was fobbed off with you need antidepressants, you have asthma (because I got out of breath) and so on, eventually I got a doctor to look at me and not the PC screen, 6 weeks later I was having a total thyroidectomy for cancer. I am now allowed to have both liothyronine and levothyronxine, but what a fight. Copy and paste this link if it does not work.
Hope this helps - there is a lot of big movement on Facebook for the use of T3 for people that don't convert and lots of support too. Dont give up we will get the medics to wake up eventually. Hugs Sal
I had a letter from my endo today after I called her. Monday I hit a real low with all the symptoms I have been struggling with. She advised that the GPs in Somerset are rolling out their decision to red light t3 without consulting either Taunton or Yeovil consultants based purely on budget savings and a lack of evidence to support it. She advised she had no choice now but could not prescribe t3 as Gp's will not support it.
It's disgusting.
I have written to the practice manager voicing my concerns and anger,but I do not expect a response.
She has advised I am being under medicated at the moment so I have upped the thyroxine, hopefully it will do the trick.
I am frightened and disgusted that my wellbeing has been taken out of my hands by GP s without any warning, discussion or consideration.
I am totally disillusioned with Primary Health care now.
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