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NHS (UK) CCG have taken away my T3 treatment

Discussion in 'General ME/CFS Discussion' started by mermaid, Sep 6, 2016.

  1. mermaid

    mermaid Senior Member

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    I know this isn't strictly ME/CFS related although I know there are people on here who do take T3 (Liothyronine). I was diagnosed hypothyroid many years before the ME/CFS diagnosis and for 17 years I used Thyroxine, until after being ill for years, I decided to get an FT3 test (not done routinely here, they just check TSH or FT4 if you are lucky) and found I was below range. An endo agreed for me to try T3/T4 combined, and when that didn't help, allowed me to try T3 only as long as my GP monitored me, which she did (kind of.... as TSH tests just show suppressed thyroid).

    Anyway, I know the UK system is probably a mystery if you don't live here, but you normally get free medication if you are on thyroid treatment, and anyway I am over 60 so it would be free for that reason. Unfortunately a pharmaceutical company bought out the only company who produce T3 here, and began vastly inflating the prices over a few years, and now the Clinical Commissioning Groups who decide what the GPs can spend, are clamping down in some areas on people who need T3.

    I was summoned to the GP today and told that the GP would no longer be allowed to prescribe T3 to me. I am not prepared to go back to T4 only so our free healthcare is no longer free then. She will write to the endo to see if he will prescribe it, but I doubt it as it's just shunting the financial burden onto the hospitals instead who also cannot afford it I will be told.

    I will then have 2 options:
    1. Use T4 only and be iller than I am.
    2. Buy off the internet (either T3 or NDT). You can in fact obtain T3 via Greece or Turkey where you can buy it across the counter with no prescription!
    I am lucky that I can afford to buy this, but it makes me nervous (not at the supplier as I know of a trusted one), but what happens if the supply dries up? I could be made ill by lack of choice. Or suppose the Govt crack down on people importing their own drugs?
     
  2. Invisible Woman

    Invisible Woman Senior Member

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    Another option to consider would be if you could get a private appointment with your endo and he could write a private prescription for you. They can write 'em up so that they are valid for a year.

    It's expensive though.

    The other thing would be if your endo was prepared to bat for you with the CCG, writing to them and explaining why you need T3.

    Unfortunately, they treat the whole thyroid thing here (UK) like it is a really straightforward issue and it so isn't.

    Might also be worth checking out:
    http://www.thyroiduk.org.uk/tuk/

    they may be able to suggest something else.
     
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  3. Mary

    Mary Senior Member

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    @mermaid - I'm really sorry, but not surprised, to hear that. Drugs are a cash cow and drug companies can be as greedy as they like. You may have heard about the epipen price gouging here in the U.S., where some people are being charged up to $600 for the epipen, when in fact it costs less than $30 to produce.
    http://www.nbcnews.com/business/consumer/industry-insiders-estimate-epipen-costs-no-more-30-n642091

    My last thyroid prescription went up about 300% in the space of a few months. No explanation, just tough. It's not covered by my Medicare prescription plan because it doesn't cover desiccated thyroid, only the synthetic kind which big pharma produces.

    I know it's a different situation than you are facing with the NHS - nothing's preventing my doctor from prescribing me anything, I just may have to pay more for it. But the whole health care system is not stacked in the patient's favor, it's geared towards profits unfortunately.
     
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  4. mermaid

    mermaid Senior Member

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    Thank you @Invisible Woman for your helpful suggestions.

    The problem re the Endo writing a private prescription is that I would still need to pay for the T3 once it was dispensed wouldn't I? (because of it being private?). If not then this would indeed be the cheapest option. I have actually just written to the Endo I saw, but it was 4 years ago, though luckily he is still in the same post. It's a long journey from here, (Penzance to Plymouth) but not entirely unmanageable if I could get the T3 for nothing.

    Yes, it will be interesting to see what he does say in his response to me re the CCG as he has been known for prescribing T3 for a long time (and his colleagues I believe), so I cannot be the only one in this situation and writing to him. I rather fear that as he has not had any contact with me for 4 years that he will not want to take this on, but we will see.......

    Thank you for the link to Thyroid UK. I actually do belong to the group, and from time to time write on their forum. I know that there has been concern over this issue some months back with other CCGs but it seems to have gone quiet on it. I gather that Somerset CCG have refused patients T3 last month, so it's a growing thing as CCGs find ways to cut their budgets. I have written on their forum and other patients are keen for me to take the case up by writing to my MP and the CCG, and no doubt I will, but I feel that I don't have a strong case to argue (other than that the Endo approved it) as the British Thyroid Association have I believe come out in the past year against T3 (again) as being helpful and in fact tend to argue that it's harmful, and therefore they will argue that it's not 'evidence based'.

    I have been on the thyroid forums for a few years, and it is interesting that the same kinds of issues that we have in the ME/CFS world crop up, with the 'powers that be' proclaiming that Thyroxine and the TSH are the 'gold standard' and the only possible treatments, when the educated patients know that they are not.
     
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  5. mermaid

    mermaid Senior Member

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    Thank you @Mary . No indeed your example given has a lot of resonances with the situation that we have over here with the pharmaceutical companies. In fact although my GP seemed totally unaware of the shenanigans with the particular company who have inflated the prices of T3, she WAS able to quote me an example of another drug that they used where this had happened.

    I am in touch with the US thyroid forums, and I remember that Armour was both changed in its ingredients at one time, and increased massively in price - is this the one you use?

    I do know that many people in the UK buy their NDT from abroad via various sources, and that there is one in Thailand that is often mentioned. My worry about all of these is that you don't always know exactly what is in the fillers although I have seen a breakdown on a US forum of what is in them (Stop the Thyroid Madness). Also people on the forums warn each other about any changes or problems, and of course it isn't in the interests of the companies to damage their reputation by providing suspect goods, but even so it's a slightly dodgy way to have to medicate yourself.
     
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  6. Groggy Doggy

    Groggy Doggy Senior Member

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    If the T4 is no cost to you, then I would take it. I have tried both Synthroid (T4 brand), and Levothyroxine Sodium (T4 generic), and they seem about the same.

    For T3, the brand name Cytomel is excellent. Liothytonine Sodium (T3 generic) is about 1/2 the cost of Cytomel, and its about 1/2 as good. If you decide to go generic, then you may want to do some research and locate a decent manufacturer.
     
  7. mermaid

    mermaid Senior Member

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    @Groggy Doggy (lovely name by the way...) my problem is that I was on T4 only for 17 years but decided to try other thyroid meds as my T3 was low, presumably because I was not converting well as the body has to convert the T4 to T3. I am wondering now if this is caused by the low hypometabolism going on in the body (new research). Not recognised by our medical people in the UK who believe that everyone does OK on T4 only and that the TSH tells all (many of us do not believe this).

    Thank you for your suggestions. I have heard of Cytomel. I am not sure of the process of buying from the US, and as I do not have a prescription now, that is the first barrier! So... if you are in the NHS system then you get the prescription and the medication for free. I presume my GP would also not be able to give me a prescription though I guess that is something I must explore too - ie could I get that at least and buy elsewhere? I am assuming not, as once she has given me the prescription then I have the right to get it dispensed in the UK.

    As it happens, it seems that I can get the T3 via Greece without a prescription, online. Other possibilities would be for me to get a private prescription and then send that abroad I guess for importing in (eg the US).
     
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  8. Groggy Doggy

    Groggy Doggy Senior Member

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    Sorry if I wasn't communicating well (normal for me). I take both generic T4 and Cytomel. Feel free to PM me and I can give you more specifics :)
     
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  9. Invisible Woman

    Invisible Woman Senior Member

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    Unfortunately, you would have to pay for the private prescription.

    Your NHS GP will not be able to write a private prescription for you, at least this is what I was told in the past. You would need to see a private GP or your endocrinologist.

    I'm wondering if your endocrinologist would be prepared to use your case to do battle with the CCG. I would imagine this is happening to other patients and it must be soooo frustrating for them to eventually get the balance of meds right for a patient and then have all the good work undermined by senseless penny pinching and bureaucracy.

    Mind you, over the years I have been in the care of endocrinologists they have continually been banging their heads against the brick wall of "if the TSH is in the normal range, everything is fine" attitude within PCTs (now CCGs) and even the labs that do the tests.

    Tick box medicine embedded in a bureaucratic system :bang-head:
     
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  10. mermaid

    mermaid Senior Member

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    Thank you @Groggy Doggy I will bear that in mind. :)
     
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  11. bertiedog

    bertiedog Senior Member

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    @mermaid I have been buying my thyroid meds for over 12 years having been initially prescribed them by an Endocrinologist privately. My GP keeps a check on me because I also have 25 mcg thyroxine and knows I take 2 grains dessicated thyroid which suits me.

    If you go to Thyroid Patient Advocacy and join the group there is a page there which will give you all the information you need to buy your meds safely. Members post their experiences with a couple of companies from abroad who supply genuine products.

    FYI This year I am using the Thiroyd brand of dessicated tabs which are quite inexpensive (miles cheaper than Armour) and have been very satisfied with them. I found the info on the TPA site.

    Pam
     
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  12. Mary

    Mary Senior Member

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    I used Armour several years ago, but the one that just tripled in price is NP by Acella (that's the whole name, NP) Initially I paid around $32 for 3 months, which was a good deal but the last time I had it filled it had gone up to around $90 for the same amount - I wasn't prepared for that! I recently started seeing a new doctor, and he sells Nature Throid in his office, so I bought that, and got a 3 month supply for only $20 or $25, can't remember which.

    It does have more fillers than the NP, but I'm not as sensitive as many people are to those, so I think I'll do fine with it.

    I would have the exact same concerns about buying products from overseas, but I can see why people do it. I am grateful for knowledgeable patients and on-line forums and the STTM website!
     
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  13. mermaid

    mermaid Senior Member

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    Thank you Pam. I have seen you on the forum before and thought that at the time we had similar issues (several years ago now) as being both hypothyroid and having ME/CFS, and using herbal treatment I seem to remember?

    That is interesting to hear what you have been doing for so long, and presumably without problems. I would have tried NDT long ago if I hadn't had the T3 for free, and am certainly thinking of trying it now.

    Actually I am already a member of TPA (as well as the other UK group Thyroid UK), as I joined them around 6 years ago, but don't go on their site so much now, really because until now I haven't had anything to ask. Their info re alternatives is excellent and around 2 years ago I did send off for some Thiroyd but chickened out of trying it then. Now of course I am in a different situation so much bite the bullet soon one way or another. It's good to know that it agrees with you OK as I am a bit worried about the fillers (have a sensitive stomach) but it's well worth a try out.

    If not, then I can always go back to T3 only via the Cyprus supplier I have found out about.

    My old endo is offering to refer me to someone else in his old team (he is now onto other things), so I will need to think about that. It's a long way to travel to see him, but I know he used T3/T4 combination. That's a bit different from allowing someone to be T3 only though and I doubt anyone would go for that except in extreme circumstances. I am not up to date with Paul Robinson (must take a look on his FB site) and I wonder if he is still getting it OK......
     
  14. mermaid

    mermaid Senior Member

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    Thanks. I suppose once you have the prescription then you can at least use it wherever you like (eg abroad if needed) but I am guessing that route is more expensive.

    I have written to my old endo, but it seems now he has changed jobs and only works with diabetes patients. He seems to want to help me, and will help to get me a referral to someone in his old team who would review me, and probably be willing, I am thinking, to doing a small dose of T3 with T4, but since I tried that and actually felt worse, I want T3 only, or I am happy to try NDT just to see if I get the same result, ,or maybe it would be different. I don't know until I try it.

    So I don't think he is wanting to engage with the CCG though he knows about the issues.

    As you say though, the system is ghastly and seemingly very inflexible, and really I can't be doing with that if I can get what I feel I need elsewhere. I love the way they always quote research and yet as far as I know very little research has been done (by them) on T3 only usage, so it's all guess work as far as I can see (the negativity about it). They have only done research on T4/T3 combination I believe.
     
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  15. mermaid

    mermaid Senior Member

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    That was quite some price hike with the NP Acella. So glad to hear you managed to find a reasonably priced alternative!

    Yes, I feel pretty safe with buying from abroad with the forums to support people. Otherwise I certainly would not. I will live in fear of our authoritarian Govt clamping down on people doing this though...I would not put it past them at all.
     
  16. Hip

    Hip Senior Member

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    A lot of the websites selling body-building hormones and peptides sell T3 (triiodothyronine), so I would think you you will never be short of sources. The quality and reliability of these body-building companies is user-reviewed on eroids.com. I bought some T3 from one of these body-building websites. For example, this website is in the UK: http://101fitnesspharma.com/index.php/uni-pharma-cytomel-t3.html

    If your sources did dry up, these are a viable alternative.
     
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  17. mermaid

    mermaid Senior Member

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    How interesting @Hip I had no idea you could obtain via this method. Quite expensive, (given the amount I am using), but still.... very good to know they exist. It will make me smile too to think of me building my body up!
     
    Last edited: Sep 8, 2016
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  18. Jemima

    Jemima

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    Interested in your in normal range but not thyroid thing....my tyroid is always in normal range but i notice the numbers each time are higher. And i have some thryoid symptoms. Any advise? My thyroid ths numbers started in the 1.5s ten the 2.5s and now 3.5. They tell me the numbers do go up and down so do you reckon i can forget about it?
     
  19. mermaid

    mermaid Senior Member

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    @Jemima I assume you are not taking thyroid meds at the moment? Are you in the UK? US?

    It is true that the numbers can go up and down, but it sounds as if yours might be slowly creeping up. It is hard to know for sure. How often do you get tested - annually?

    At this stage it would be good to have some other tests done and then you might be able to improve things before they get any worse if they are .....

    For example you could ask for a test for thyroid antibodies known as thyroglobulin antibodies. I think that they don't do this routinely now as they used to. If they are slightly raised then it could indicate the start of a problem.

    Also it would be good to get other things checked out such as iron levels, Vit B12, Vitamin D, as all of these are important to be well in range (not just over range) for the thyroid to work well. Some people also suggest taking extra things such as selenium, iodine, zinc and a B complex. It's hard to know if you need those - depends on how well you are absorbing foods.

    Some people also believe that it's not good to eat gluten if you have thyroid issues. You have to make your own mind up about that one, but worth reading up about it. There is a strong link between coeliac disease and thyroid disease at any rate.
     
  20. JamBob

    JamBob Senior Member

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    @mermaid I'm expecting to be in the same situation as you at some point soon. I've been taking Armour for years but the price went up last year (quite dramatically) after Forest was sold to a big company and I think it is only a matter of time before I get told it is too expensive.

    I too live in fear of having my supply cut off as I took levothyroxine and felt so dreadful on it so much so that I took myself off it. I worry about not being able to buy Armour privately. With another drug I take (DHEA), I used to buy the brand that works for me from the US but then the government (around the time of the 2012 Olympics) cracked down on any imports of anabolic drugs and so the US suppliers (who are reputable) will no longer ship the drug. I've had to find some back route to get the specific brand but I think it is only a matter of time they close any loopholes.

    I wonder if you have done the D102 gene test or 23andMe? I found that I have the polymorphism of the D102 gene that means you do poorly on T4 but have an improved response to T4+T3. I plan to use this as evidence if they try and cut my Armour prescription. Though I have found that in the case of thyroid disease, UK doctors are very blinkered and aren't really very interested in any evidence unless it is evidence that supports T4.
     
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