NHS

Hello everyone,

I am very poorly and my GP won't help me, I have been seeing a private Dr for over a year now and although things have improved, things are still very bad. I am now near to running out of funds for medication/treatment privately. I have been back to my GP who said they are only allowed to give you T4. My private Dr has diagnosed adrenal fatigue as well as the underactive thyroid, they think that Cynomel (T3) is the only chance of recovery but my receptor uptake is so bad because of how long this has been going on that I struggle to take anything without getting really nasty symptons. All I want is to get better - is their any help for me ..............

32 Replies

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  • Hi Kitten, Have you asked your GP to refer you to an endocrinologist? NHS endos can prescribe T3. x

  • Hello Beaton, I have an appointment next month with an endocrinologist but fear It is going to be a waste of time, according to my GP who referred me, this endocrinologist is of the same opinion as my GP - which is T4 or nothing.

  • I would phone the Endo's office and ask if T3 is available, if reqd. by you.

    If no joy look for a better option using T-UK list help.[see below]

    There's a bit of politicking going on [I feel] at the moment -as GPs may be aware of contention over this and many would like to help if they could. T3 does seem to have won a 'tricky' name.

    I think, with dosing care, it is easier for the body to use, but I've not had it myself.

  • You will find information about liothyronine (T3) available through the NHS, here:

    thyroiduk.org.uk/tuk/treate...

    The site is worth exploring.

    I am sorry to hear of your difficulties, have you any results of blood tests to share with us - you are entitled to be given a copy of any blood test, just ask.

  • Hello,

    Thank you for the link I am very greatful. I have had copies of my blood test results, the TSH goes from being very high to very low. I have said that taking the T4 makes me very Ill and causes thyroid toxicous, he knows that my pulse is very high and erratic and that my blood pressure is very low, he can see me struggle to breath and that I am Ice cold and very pale (the other symptons I can't prove to him) but he just says my thyroid is coping. Last time I went back to my doc they implied that I was just depressed and that if I took the T4 I would be fine, I left nearly in tears and just didn't know what to do or where to turn. My private Doc has said that T3 is the only thing that will make me well, but my adrenal glands are not working well enough and also struggle with the T3. I took the ASI test to my GP which clearly shows the adrenals are not working properly - he disregarded that and refused me treatment. I have been reading self help books and taking endless supplements but as I said funds are very low and this is causing stress.

  • Drat, typo in the link, better luck this time:

    thyroiduk.org.uk/tuk/treatm...

  • If you email louise.warvill@thyroiduk.org for a copy of a list of NHS Endos - with a bit of luck one may be near you. You can then ask for a referral.

  • Hi If you see a private endocrinologist, or any private consultant, they expect the GP to prescribe what they ask, this is for safety, also do bloods etc if asked. If you cannot find a good NHS Endo this is an option. It is quite different for private doctors as they are not hospital consultants.

    Best wishes,

    Jackie

  • Hello Jackie,

    Thank you for the advice. My GP is saying they are not allowed to prescibe anything other than T4 - so maybe a change of surgery is in order.

    Kind regards

    Debbie

  • By whom are they not allowed?

    There is NO ban on GPs prescribing, for example, T3 or desiccated thyroid.

    There may be local restrictions. It is quite possible that some areas have policies such as referring patients to endos if their needs are more than T4. Or budgetary policy means the GPs' clinical freedom is inhibited.

    If your GP says he is not allowed, ask him who stops him. In my view, you have every right to know who is imposing this apparent policy.

    Rod

  • Good point, Rod. I may be running into this one myself soon and will use that approach if needed.

    ie: Tell me why you can't treat or send me where they will! Grrrr...

    [Or- is it like patient records Confidential info...;) ].

  • I believe a Freedom of Information Act request for this information could not legitimately be refused.

    Rod

  • What happened to my post here?

    Must have taken a dive- it explained that my comment above was 'tongue in cheek'... Not to worry -so long as not excised ;).

  • No idea.

  • I am not sure because the two doc's I have seen more recently did not know what T3 was, they can't have every prescribed it and he made it clear they don't prescribe Armour Thyroid because it is dangerous. I am very concerned about the things that have been written on my notes and I am worried this will effect how I get treated in the future. Is it still possible to request copies of your notes? He has written things on my presciptions before that have made the pharmist laugh and me having to give an explaination.

  • Did they present any evidence about Armour Thyroid whatsoever? (Or any other desiccated thyroid product.)

    There has been very recent research which suggests it is a perfectly reasonable medicine to use.

    thyroid.about.com/b/2013/06...

    Their ignorance should not be your problem. That is "should not", unfortunately, not "will not". :-(

    Yes - you can access your medical notes. Have a look here:

    thyroiduk.org.uk/tuk/NHS_In...

    A doctor who does not know what T3 is cannot possibly be competent to handle thyroid disorder properly. Perhaps they tried to look up "T3" in a book of medicines because in their ignorance they did not realise that the medicine is called "Liothyronine"?

    If you can change doctor, you might do better.

    Rod

  • Hello Rod,

    Thank you for the information, it is very helpful. I was also suprised when they didn't know what T3 was - I did use the other names that it comes under but they still hadn't heard of it. My real concern is the endro I will be seeing in Oct - My GP has sent me to him because he shares the same opinion as him, there have been letters sent to this endro, so I don't know wether to go - as it may well back fire, All I am after really is to be prescribed T3 and a liitle help/monitoring with my adrenals and for them to stop labelling me as a depressive, I am very I'll and everyone around me and my Private Dr has proven that, but as always it falls on deaf ears.......

  • Hi Rod

    I have been seeing Dr B recommended by people on this site. She asked my GP to prescribe T3 and he did on an NHS prescription. The pharmacy at the surgery asked if I wanted to register for an exemption certificate which I did and my GP signed his agreement. I now have an exemption certificate. I saw my GP last week to update him and to say that I was really improving on T3 alone. He wasn't quite as nice to me actually, but I thought no more of it. Today I went to collect my T3 repeat prescription and he has said no more on the NHS, enough is enough and presented me with a private prescription costing £306.00 for two months T3 all because I am seeing Dr B privately. The reason for seeing Dr B was because there aren't any endos in my area who have any knowledge of treating with T3. My husband is due to see my GP tomorrow to discuss, but we don't know what my rights are. How can he approve this one minute and take away the next.

    Any advice

    :(

  • Not sure if you can exploit anything in the NHS constitution:

    nhs.uk/choiceintheNHS/Right...

    Or here:

    tinyurl.com/TUK-HU-PRIV

    Unfortunately, medicines recommended by a private consultant do not, it appears, have to be prescribed by an NHS doctor.

    You are now seeing one of the reasons so many end up buying their own medicines from abroad.

    Rod

  • Hello Zizi,

    That is a ridicous Price for T3, I am buying it privately - which sort are you taking? I will give you the website? GP's do not take kindly to us patients seeing private Doctors, I too have a medical excemption but it's been know use as they won't prescribe T3 to me

    Best wishes.

  • I think this may possibly have something to do with funding for 'special' treatment no longer being ring-fenced. It is all one budget now. I suspect this has something to do with the sudden rise in people who are suddenly being told they are no longer allowed their t3. It all seemed to happen around the same time...

  • Quite possibly doesn't help that the cost has rocketed - since it was sold as Tertroxin to its now astronomic £52.46 (according to BNF).

    I think that is a quadrupling of price in a few years.

    Rod

  • Apparently that is at least partly because brand names have a maximum price. Generics do not so pharmaceutical companies can charge what they want for a generic but not a brand name. Bonkers!

  • Quite.

    Even more bonkers that we have no way of the NHS somehow purchasing from abroad if appropriate. Can't help feeling that Henning with their Thybon might be a more reliable supplier than Amdipharm...

  • Hi Kitten, I think you need to change doctors. Is there another practice near enough?

  • Hello Beaton,

    There are surgery's about 20 miles from me but I don't mind that. I think I will get my medical notes checked out first and then I will have to find another surgery, as this one really isn't interested in helping me.

    Best wishes

  • I wonder with this sort of reaction with GPs being so totally common that there isn't a worry deep down that they won't have the resources to get 100,000+ patients [my guesstimate] well ,who may be currently struggling - if they 'got on the case'. Just a thought.

    I don't mean the people on the shop floor- I'm sure they aren't told enough to judge [or given choices we would like] - but high up something's running, I suspect..

    A hidden illness & difficult to treat often enough.

    Scots petition -Whey Hey!

  • Hello Tegz,

    I think if we were listened to & treated with the proper medication it would in the long run save money,

    The T4 never worked for me & made me even worse, I was always being sent for blood tests, having Iron suppliements and laxatives and then finally getting the appointment with the endro - this must cost more.

    Best wishes

  • Agreed Debbie, a waste of money, and worse- of peoples invaluable healthy lives!

    Have you come to any conclusion /action plan on your approach?

    I saw Rod posting elsewhere that we have the absolute right to treatment of prescribed medicines ,so a letter to this effect may save you a lot of searching and travelling. The endo will see a copy, no doubt.

    A hint that a complaint is being considered by you should seal it!

    I know you probably feel quite low and it is a comfrontational approach to take- but if moving anyway, may be worth a shot?

    You seem a strong sort -up to it ;)

  • Hello Tegz,

    A plan of action is required and I do think the only way is to fight back, what they are doing is ruining peoples lifes.

    I am now 32 and it is only thanks to my private Dr that I am still here at all, my adrenal glands were near to packing up all together, sadly I can no longer afford his help and am in debt because of the treatment , and can not even afford the vitamins I need to promote thre receptor uptake. I work full time and am half way through completing a Book keeping Diploma so at the minute it would be impossible for me to get another job to fund the treatment, not to mention how Ill I am. It's a horrible situation that causes a hugh amount of stress. I am very annoyed and will certainly complain. I wanted to write to my surgery & doctor, along with the GMC and put my case. I have been spending endless time researching this condition and what makes us well etc and will be enclosing evidence to support what I believe. In my opinion the docs are hiding behind blood test simply because they don't really understand the condition fully - that is when the whole endocrine system breaks down. They are partly to blame for this for not diagnosing people early enough.

  • Good luck with that! Nothing worse than lying down under the strain for us mentally.

    Falling asleep ..well, that can't be helped, I know :)

    What vits are you focussing on and can't afford?

  • Vitamin C, D3, B Complex, Extra B1, Muliti Mineral, DHEA, Co Enzyme Q10, E, K & A, Magnesium, Calcium Selenuim & Iodine. Reading about these can make all the difference.

    Thats why I try to keep busy, to take my mind of all the pain and how gloomy things are, I am determind to get well & get my life back.