I was diagnosed with hypothyroid about 2 years ago after years of feeling crap and couldn't find anything wrong. My Gp did a Free T3 test as t my request after I did some research on here my Tsh test came back borderline repeat tests month later were normal but I asked for T3 testing which came back low my Gp just said my body obviously wasn't converting T4 to T3 so put me on T3 within a few months I was feeling alive again started my own business and starting living again then I had to move and move GPS who won't give me T3 on the vadvice of some phycisist! Because my T4 was low she has put me on levothyroxine which makes no sense to me if I am not converting how is that gonna help well 3 months without T3 and I am struggling to get out of bed in the morning every muscle hurts I can't turn my neck without pain and I am back to square one but sure I feel worse than before and now I am fat to boot well 2 stone heavier! I have got an appointment at the docs on the 4t h I have never seen an endo but am going to request to be referred I live in Lincoln does anyone know of an End in my area that is receptive to Treatment with T3.
Thanks in advance for any help. Xx
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lorraineR
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Point out that T3 suppresses TSH and FT4. Refer your new GP to your medical record where your old GP noted your failure to convert, your thyroid levels when you improved on T3 and your current symptoms and thyroid levels now you've been switched back to T4 and your health is deteriorating.
If she won't listen, ask her whether the withdrawal of T3 is because of the practice's drug budget (NHS T3 is very expensive) or whether the CCG has prohibited it. See a partner GP or the practice manager to pursue it, if necessary. If they don't relent complain to the CCG that your previously successful T3 treatment regime has been discontinued due, you suspect, to cost and your health has been adversely impacted. Back up your complaint with evidence from your medical records to substantiate the case for T3.
I live in the US and have excellent health insurance through my employer. I understand that in the UK, there is now only one supplier of T3 to the NHS, and they raised the price five-fold when it became their monopoly. Now patients are denied or taken off T3 because of the cost to the NHS. I think patients and their friends and family members should write the company and point out that many patients who do poorly on T4 and really need T3 are suffering (describing their personal experience, where applicable); also suggest that, if the cost were more reasonable, many more patients would be prescribed T3 and the company might actually make more money. You might start a petition to the company demanding that they sell T3 to the NHS more cheaply. It's just unreasonable for them to charge so much that the NHS doctors are all but forbidden to prescribe the drug to patients who need it to be able to function normally. (The situation makes me wonder whether the US is headed in the same direction. It certainly argues against a single-payer, government-run system and especially against physicians' being employed by the government.)
There's something seriously wrong with the NHS procurement system when Amdipharm Mercury Pharma can charge £103 for 28 x 20mcg T3 tablets that are avaiilable OTC in several European countries for a few Euros for 100 x 25mcg. I've bought 100 x 25mcg online for £13.95 inc p&p.
AMP are also one of 3 UK licensed suppliers of Levothyroxine so they benefit whether or not GPs prescribe T3, although the profit margin won't be nearly as good.
Any manufacturer can apply for a licence from MHRA but none do, so NHS pays inflated prices and we endure frequent shortages because of lack of competition.
The real villains preventing prescription of T3 are the British Thyroid Association & British Thyroid Foundation whose guidelines specifically state that T4 monotherapy is the only correct protocol for hypothyroidism and failure of symptoms to be resolved must be due to other non-thyroidal illness. T3+T4 combination is not advised. GPs are seemingly incapable of distinguishing guidelines from cast in stone. GPs are private businesses but sign up to a NHS contract which pays according to how many people are registered on their list (not how many consultations) and various flavour of the month health schemes and clinics earning additional funds.
The cost of drugs to the NHS is possibly the biggest single scandal within the NHS. It's time we all rose up and "encouraged" our MPs and the NHS to do something about it. Someone, somewhere is making large amounts of money. Whoever is responsible for procurement is most certainly not doing an effective job. Supermarkets buy in bulk and drive prices down. NHS buys in bulk and drives prices up. Those responsible for purchasing drugs for the NHS need investigating. Why are they accepting such high prices?
Rosetrees I could not agree more with all you have said,the people who are responsible for procuring the drugs could not do a worse job if they tried indeed they would be hounded out of any other business they were responsible for,I don't know why we in this country just seem to accept this kind of treatment,it wouldn't be acceptable elsewhere,it definitely is time we all took a stand
omg clutter I cant believe you can buy them so cheaply abroad and people who need it here are held to ransom and there health allowed to deteriorate you would think the government would step in and do something about it,or someone else in the know like the Thyroid association and Thyroid foundation,there should be some sort of petition to insist the company reduce there prices,I wish they had someone else to compete with,maybe thyroid uk,could start a petition,you have to hope it gets better soon
Reluctance to prescribe T3 isn't only to do with cost. Some GPs are frightened it will cause osteoporosis and atrial fibrillation and won't prescribe what they don;t understand or are frightned of. Others rigidly adhere to the BTF and BTA guidelines and some are instructed by their CCGs not to prescribe it other than in exceptional circumstances.
I'm not particularly in favour of another petition about T3 although I will sign if someone starts a petition. I don't think there's a chance in hell of anyone interfering in the pricing of T3 as market forces rule but it would be great if NHS procurement was shaken up big time. I think the TUK petition into funding research will be more effective than attempting to price cap AMP. epetitions.direct.gov.uk/pe...
Why can't the government intervine with how much these companies charge for low demand drugs. I'm on T3 and a high dose so my perscription costs £350 a month! That's ludicrous! But I'm really poorly on T4 and can't function! I know I'm lucky my doctor lets me have it but I feel I have the right. We must be able to do something about this????
A branded medicine is subject to price controls of some sort. The fundamental assumption being that branded medicines are either in patent, therefore have a monopoly supplier, and such control are appropriate.
When the patent ends, the market opens up to competition which results in prices being what the market dictates.
Mercury Pharma liothyronone used to be sold as Goldshield Tertroxin. At that time branded medicine rules applied. They then switched to supplying it as a generic which removed the price controls. Thereafter it was not subject to these branded medicine price controls and the price has rocketed to around 7 times what it was. It is now similar to the actual price of Pfizer/King Cytomel - the USA branded product - in the USA.
At the time of the switch, the combination of the price and the small market probably meant it was not a particularly attractive market for other companies to enter. Now the price has increased so much, maybe other companies are eyeing the market?
Sanofi looks a favourite to me as they already produce both their own liothyronine and Thybon Henning (Henning is a subsidiary of Sanofi).
What we do not know is whether the change of name was made expressly to allow this pricing strategy to be implemented, or if it simply became an opportunity that someone in Mercury Pharma noticed the possibility. In some ways it doesn't matter, ether way the costs are high. However, if it was done with this aim, the cynicism involved is pretty damning of the company. (Not that they would be the first such company to behave so badly.)
Rod, Thanks for the notes re branded price control. I vaguely remember that when there were availbility problems last year it was due to difficulty getting the active component from Europe. So they don't even manufacture the medication but still charge a massive mark up!
Jim, The shortage of active component didn't appear to cause shortages in other European markets, or if it did, other generics/brands were available as no one seemed to be complaining.
A pity GPs and pharmacies can't/don't source affordable T3 outside of UK and save the NHS a fortune!
Hi I am very sorry to hear about hyour problems. I am very surprised that you GP put you on T3, GP usually require a Consultant to authorise this treatment. I hate to put a damper on you treatment but in the UK all endos are required to use T4 treatment only and I believe they only use t3 in extreme cases. In the nHS they will not test for T3. My advice if you want to feel well is find a private doctor that will treat with t3 or a Dr that provides NDP. Why am I being so blunt with you its because I don't want you feeling unwell and wasting your time waiting to see an Endo. I wish you all the best and hope you get the best recovery soon.
GPs and endos can & do prescribe T3 and order FT3 tests although labs tend to ignore FT3 requests unless TSH is suppressed and the GP/endo may have to insist forcefully.
I am more than happy to be proved wrong on this one and my main aim if to get the person well. But in my long battle with Thyroid issues my GP and other GPs in my area and Endos both NHS and privately have point blankly refused to prescribe T3 on the NHS. I have also been informed that they will not and can not order a T3 blood test. It may be my area who knows but I live in Essex and they is how it is. I did manage to find one endo who would give out T3 as in his worlds it was a kick in the pants to wake up but he would just give me enough for three months and then I had to go back to him for a prescription and is this was a private dr the cost were prohibitive. The endo was able to do this as he was a consultant in another field and that allowed him to bypass the RCP guidelines. This is what I have found out over the 15 years I have had this madness.
Even though my Endo insisted on my last visit this week, that most if not all the Endos in the hospital prescribe T4 ONLY, I insisted that I was better with it and she saw that there was no harm done and I was happy to continue she prescribed it again for 6 months repeat prescription. With regard to the T3 test I am awaiting a letter follow up after I just complained about my T3 not being tested by the labs. Will follow up with this later.
I agree with what you are saying .My FT3 test was ordered twice and I personally said to the phlebotomist How do you think Dr... (my Endo) can do his work and make a diagnosis if he doesn't have the fullest of information? When the result finally came I was prescribed T3 and my GP was given the repeat prescription provided by the hospital and has prescribed it.this is in Essex.
I will be watching out for all suggestions on what we can do as it is something I feel very strongly about.
I saw recently that Actavis have made a $25 billion take over bid for Forest Pharmaceuticals in the USA ....That is big money.
May be Actavis could be made aware of the situation.
I agree with some of what you say stockman27. I tried for a long time to get my T3 tested let alone trialled T3. Since the last three months I fell lucky with two Endos. Now are upping me from 20mcgs T3 to 30mcgs and 50mcgs T4. I trialled it myself privately, mexican cynomel. I think that this helped because I then had proof that I was alright I had taken it in small doses and monitored it well. Also the fact that I have medical training as a nurse etc caught their ears. For nigh on 20 years I went got weighed and told to keep taking the tablets tsh fine. Now this girl has studied studied and studied and I am learning more and more each day about how vitamins, low stomach acid gut health etc are all crucially important. The Endo's never tell you this, without these tests and knowledge it is like taking a tablet that is falling down a bottomless pit, and years upon years of suffering.
Hi Would you mind contacting me off of the board as this conversation is very interesting to me!! I am taking supplements but they are not doing any good in fact the opposite but I have taken one at night before I go to bed an it works. So I would like to learn more about what you are saying Please.
Hi All My second rely to this person who is feeling poorly. It is a scandal but I don't think we can do any thing in the short term other than sign Louse petition . And try and help this lady get well. The only thing I can think of is find a dr here who will prescribe t3 and perhaps she can use a pharmacy in Belgium with I know its cheaper or move to to a NDP compound that has t3 in it. I get so angry when I see patients like this who are feeling very poorly and the Dr will not help. I believe Drs want to help but like most of us they have bills to pay and they have constraints placed on them by the RCP and if they do not follow their guidelines they get struck off.
the blood tests are irrelevant. Look at tpauk.com and read Dr Barry Durrant Peatfields book 'Your thyroid and How to look after it. You will need to treat yourself. GP's work under the pharmacuetical medical model and you need to be treated under the Endocrinological medical model which they have no understanding of.
TFTs aren't irrelevant at all. They are diagnostic tools and important in monitoring thyroid status but dosing must take into account clinical symptoms and not simply be used as a means to force bloods into range.
I know the professors who developed the blood tests and they do not agree with the way they are used by the medical establishment - ie politcal tools grow up
they are only relevant to early onset primary hypothyroidism which is very rare. Everyone else has secondary hypothyroidism and they are totally irrelevant - it really has nothing to do with interpretation.
You've muddled them. Primary hypothyroidism is very common. Secondary or central hypothyroidism is rare, but not very rare, and although TSH is irrelevant, FT4 and FT3 are very relevant.
TFTs are very relevant to people who don't have a thyroid but need to keep their TSH suppressed and avoid their FT4 and FT3 getting too high; to hyper and hypothyroid women who want to conceive, reduce the risk of miscarrying, ensure good foetal development and avoid post partum thyroiditis; to hyperactive thyroid patients taking Carbimazole so they don't become hypothyroid through over medication; to the few hypothyroid patients who have over medicated and need to gauge their dose decrease; and finally, to most hypothyroid patients who have to educate their GP that high in range TSH and low in range FT4 and FT3 with unresolved clinical symptoms means they are not normal results but that they are under medicated when they're taking thyroid replacement.
Very true. Although the normal ranges are "irrelevant" for me, the tests themselves are actually quite helpful. I know what levels of t4 and t3 I feel well at.
If I'm getting depressed and my T4 and t3 have dropped then I need to increase my dose. Thyroid isn't the only reason I become depressed. Other reasons include adrenals, joint pain (not caused by thyroid), low iron, low vitamin D and low B12. Getting all the above tested, including t4 and t3, helps me to know which areas need treating. I have a sensible doctor who realises that TSH is useless in my case, except to show that I have central hypothyroidism. However the t4 and t3 are useful as a guide when taken alongside previous results where I was well. The results are taking into consideration alongside symptoms and other issues.
Not irrelevant, just not to be relied on alone with rigid thinking about reference ranges.
I don't necessarily agree with the way they are used by the medical establishment either, but that doesn't make them totally useless. Either way, there is no need to be rude.
T4 is thyroxine. Thyroxine is converted into T3 to be used by the cells. T3 is the active form. The thyroid produces both but mostly T4. Usual treatment is thyroxine (T4) only but that doesn't work well enough for some people.
All the terminology does take a bit of getting used to
Liothyronine (T3) is also thyroid hormone replacement and is used when patients can't tolerate Levothyroxine (T4) or in combination with Levo when FT4 to FT3 conversion isn't happening properly and FT3 is low in range.
Just for clarity, Thyroid UK don't recommend self-medicating however they are aware that many patients have to resort to this due to lack of effective treatment through the NHS.
Ahh I forgot to say my TSH is suppressed and nobody knows why as all my bloods are well with the guidelines FT4 is low and my T3 is was on the low side of the scale but because my TSH is suppressed my GP still wants me wants cut down on my T4. Also My Tempresture throughout the day is 97.2 it doesn't rise so there is something wrong, hence I am on the WTP now.
If your TSH is suppressed with low normal T4 and T3 the reason is most likely that you have central hypothyroidism of some kind. Your doctor should NOT be reducing your dose on the strength of TSH alone. This is why T4 and T3 tests are necessary. If your T4 is low and your T3 is low end of normal, it sounds like you need more thyroid hormone, not a reduction.
Unfortunately some GPs don't seem to know anything about central hypothyroidism. Some don't even know that TSH isn't a thyroid hormone but a pituitary hormone. If, for whatever reason, your pituitary isn't producing enough TSH, your thyroid won't produce enough thyroid hormones and you will have hypothyroidism.
I hope that helps explain it a little bit. I think you need to have a discussion with your doctor about this or maybe ask for a referral to someone who understands this sort of thing.
I hope you get the treatment you need!
Carolyn x
P.S. LorraineR, I hope you find someone in your area who is able to help you with t3 treatment.
HiI all just an update to my original post things haven't changed much in fact bit worse I saw my gp requested referral got referred to an endo not the one I asked for! He looked backyat my record's and dropped the bombshell tgat he didnt think I should have been pur on anything fron my bloods! He said anyone wothout thyroid issues would feel better on T3! He took mw off T4 complely and I am back on the 17th after habing more bloods next week! I feel shocking but I am sure my bloods will not be enough ti give me anything. The thread totally went over my head knowledge wise what's the D102 gene? ? I just dont have the energy to fight I have a 6&7 year old a husband who works over 50 hours a week and hardly home I work partime also and only have the energy for that let alone sat researching self medicating scares me especially as he told me longterm Thyroid meds cause bone thinning I am already high risk for osteoporosis and heart trouble he mentioned si I am hoping my bloods show thyroi issues I have the results in a letter he sent to my gp but no ranges. Thamks. X
Just a suggestion, but I think you might get more replies if you create a new post/question and refer back to this one with a link. I often ignore old questions because I just assume someone hasn't noticed they are old. I'm sure I'm not the only one to do this.
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