Thyroid UK
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The battle isn't over on T3

Thoughts on the recent news on liothyronine (T3) .

After the NHS decided not to withdraw T3 due to the response it recieved in favour of keeping it on prescription following their consultation on what they called 'low value' medicines, Prescqipp published its response which was posted on this forum by one of the Adminstrators.

prescqipp.info/component/jd...

It seems as though the response from Prescqipp has effectively made T3 inaccessible for patients who need it. This document advises access to it available only through Endocrinologists and in rural counties there is often no Endocrinologist or only a diabetic specialist and no thyroid specialist. In addition if CCG's make patients access Endocrinology to get liothyronine prescribed, then patients who need it may be deprived through inability to gain an Endo referral via their GP.

Endocrinologists are unlikely to prescribe T3 due to cost effectively excluding patients from accessing it even if they need it. In addition, in many areas labs rarely test FT3 which means that patients have to access private blood tests to evidence low T3 levels and these results may not be accepted by NHS doctors.

Levothyroxine, once ingested becomes indistiguishable from endogenous hormone so levothyroxine acts to replace endogenous thyroxine and the body has to convert this to liothyronine or T3. There are many factors that may prevent the proper absorption and conversion of T4 (leaving patients symptomatic) some of these are as follows:

Taking levothyroxine orally, predisposes patients to small intestinal bacterial overgrowth which prevents proper absorption of nutrients and probably also interferes with the proper absorption of levothyroxine.

ncbi.nlm.nih.gov/pmc/articl...

There are genetic factors known to affect conversion of T4 to T3.

ncbi.nlm.nih.gov/pmc/articl...

There has been a long history of problems with levothyroxine manufacture so that many patients have suffered symptoms due to a number of manufacturing and storage factors and failures. Additionally, the excipients, carriers and solutions used can effect levothyroxine dissolution rate which has a profound effect on patient health. Many factors have been found to affect the bioequivalence and bioavailability of levothyroxine and all of the factors may not yet be known.

See MHRA reveiw of levothyroxine - similar reviews in New Zealand, France, Australia - all indicating problems with levothyroxine manufacturing.

gov.uk/government/uploads/s...

Levothyroxine products are tested for bioequivalence and bioavailabiltiy in healthy human subjects and the rate of absorption and the way the product works may differ in diseased patients.

sciencedirect.com/science/a...

For these reasons it's important that patients have access to T3 because it is actually the only thyroid hormone needed by the cells. T4 being a precurser to T3. If a patient has insufficient T3 then they will become symptomatic and unwell. If there is any doubt that levothyroxine will be adequately absorped by all patients equally under any condition then T3 needs to be readily available to thyroid patients because even a small lack of hormone has a profound and all pervading effect on health.

My own veiw is that GP's should be able to prescribe a trial of T3 if a patient has low FT3 blood test levels. All thyroid patients if symptomatic should be able to have an FT3 blood test.

The issue of cost is a separate problem the govenment needs to address with a change of legislation and a change in NHS procurement practices as T3 is cheap and freely available in many European countries with adequate quality controls.

All the useful links if you need to back up your case if you get an Endo referral.

thyroiduk.org/tuk/T3-Campai...

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Am aware and have already questioned MP copied to Jeremy Hunt et al. Have also asked why the likes of PrescQIPP and CCGs are or the NHS payroll since they are not value for money. CCGs should follow the PCTs down to the job centre. The cost of the Consultation is a joke. NHS England were backed into a corner in my view due to all the media attention. Hope PrescQIPP are feeling secure as they will get more of the same. I have questioned the existence of PrescQIPP for sometime as there blurb claims they are a not for profit organisation funded by the NHS. To do what. Another bunch of power crazed bureaucrats.

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To get ready for privatization and dismantling of NHS ?

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Following to read properly when more awake and brain in gear x

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Same here but what great news, there is hope then that for those of us that were on it we may get it back.

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Yes, let us know when you do.

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Thanks for that very comprehensive statement about the t3 situation. The fact is, we shouldn't be made to BEG for a hormone our body NEEDS & which is readily available.

I cannot tolerate Levo, even though I tried hard to make it work for me (vitamins, supplements, going GF). I was lucky to meet an open minded Endo (when I was admitted to hospital for the effects of taking Levo) who allowed me to trial t3 only. That was over 3 years ago.

The problem came recently when I needed an increase in my dose. I was feeling tired, putting on weight & my TSH was 2.3. Although the Dr agreed I needed an increase, she said she would have to refer me to an Endo to get it.

I can't risk seeing an unsympathetic endo who might try to get me off t3. Furthermore, I don't want to bother an endo every time I my dose needs adjusting.

So I bought some t3 to make up the shortfall in my medication. People who need t3 shouldn't have to buy it or pay for tests to monitor their dosage, so I agree, the battle is not over!

So what do we do now?

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I wonder if it’s time for a class action against the NHS using Therium Litigation Funding who are behind the class action suing Google for putting a code in IPhones to snoop and deliver targeted advertising. Maybe they would take it on on behalf of all off us that are affected by poor treatment and lack of knowledge which is so widespread throughout the NHS

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Newday64,

Although the BTA etc. say endocrinologists should initiate use of Liothyronine I don't believe they've said that patients need regular management by endos or that GPs shouldn't adjust dose when required.

That said, I can see why you are reluctant to see an endo who may not approve of T3 and want to stop it being prescribed.

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I agree that Drs should be able to manage my care but she flatly refused to. She said she has no idea how to titrate t3.

What's more, she said that having my t3 stopped was ' just like celiacs no longer getting bread on prescription. When I pointed out that a life-giving hormone was nothing like free bread, she got very defensive! I gave up at that point.

Not going to risk an even more opinionated Endo!

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Newday64,

Coeliacs are no longer getting gluten-free prescriptions because g-f bread and flour is widely available in supermarkets. Liothyronine isn't.

I don't blame you not wanting to see an endo who could actually stop your prescription but I do think your GP is beyond wet and stupid. What's difficult about figuring out a dose increase of 10mcg Liothyronine being equivalent to 30mcg Levothyroxine?

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I first saw endo's registrar as it appeared I was not converting Levo. I was given 10 mg by the registrar, she was leaving that day! Endo was not pleased when I saw her on the next visit! Then my GP continued to prescribe and increased it eventually to 20 mcg over a couple of years until CCG clamped down on him and said it is a hospital only drug and I was referred back to endo earlier this year whereupon it was reduced back to 10 mg with the threat that they are going to reduce my Levo too from 75 mcg to 50 mcg any time now cos despite feeling okay on T4 75 and T3 20 my TSH is 0.02 and they want it back at 1.5!!

Does this mean that my GP can prescribe it again for me? (Have a new GP now as very sadly, the other had to retire as he was a small practice and could not keep open for the hours required.)

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Lor7,

When they say Liothyronine is a hospital only drug they mean it should be initiated by a specialist. I was originally prescribed Liothyronine by an oncologist and GP issued the repeat prescriptions. Liothyronine was stopped then reinstated by endocrinologist and GP issues the repeat prescriptions.

Endo should not adjust your thyroid meds unless you are overmedicated. TSH 0.02 is not overmedicated if FT3 is within range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your endo.

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Hi Clutter

Thanks for this. They out and out stated to him he was no longer to prescribe it but he carried on until I was finally sent my next endo appointment which took them two years to sort out. The registrar I last saw was three months ago who wrote to my GP telling him she will see me in three months with a view to reducing T4. No appointment has appeared! So, can my GP just carry on prescribing T3 (my last FT3 was well in range around 4.5). The only issue I would have is that the hospital where this GP sends bloods do not test for FT4 and FT3 unless the endo asks them to do it!

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Lor7,

Your GP can prescribe anything s/he thinks you need. If your GP can't order FT3 you can order it yourself via thyroiduk.org.uk/tuk/testin...

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Thank you for that. I won't bother visiting the endo any more, that's if they can get their act together anyway and sent the appointment they promised!

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Lor, May I suggest you phone the Endo’s Secretary and pester him/her UNTIL you DO receive or ar given on the phone, the appointment date and time! Pestering people can work wonders you know - they’ll give you one just to get you off their back!

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If only, they don’t answer the phone, have to leave a messagewhich they never return!

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Nanardake thanks for explaining this so clearly.

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These are only my non medical patient opinions. The links down the bottom of my post are from Thyroid UK so they are very useful.

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hi thanks for this info it's really valuable. I am on a massive dose of levothyroxine (125mg) even though my bloods show I'm above range! But my TSH is 0.01 which is below everyone's range because I had a pituitary adenoma which messed with my pituitary and stopped it working. I take 10mg liothyronine too as I was on a trial 10 years ago for T4/T3 combination treatment. I have been told that you need T4's in your body to release oxygen, so I kept taking it. However, I'm not happy with that level. I'm seeing my Endo next week and I would like to go over to all T3's, will that work? I also take a little naturethroid - a tiny bit at the moment as I worried I would be allergic to it. If I got only T3's from the Endo and I kept taking naturethroid for T1,2,4,5 would that be better?

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Cazlooks,

Why do you want to switch to T3 only?

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I don't feel optimal - if there is such a thing as feeling right once it's all gone so wrong!

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Cazlooks,

But why do you think T3 only is the answer rather than increasing T3 dose? You said FT3 is within range but that's guesswork as you don't have FT3 labs and even if it is in range it doesn't mean it is optimal. As you reduced Levothyroxine dose to 100mcg 14 days ago your FT4 and FT3 will have dropped.

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I am on a massive dose of levothyroxine (125mg)

125mcg Levo isn't a massive dose. It's a very, very ordinary dose! Lots of people are on far more.

Your 10mcg levothyroxine is only "worth" about the same as 30mcg Levo in my opinion. So the total of the two things still only brings your dose up to the equivalent of 155mcg Levo, and that is still a very ordinary dose too.

I wonder why you were told you were on a massive dose?

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Gosh if your dose at 135 is massive then mine at 195 is humongous! And that's been increased from 125 over the last 4 months.

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I am now on just under 125mcg. The right dose for you will be different from other people as we are all individual. The aim is to be symptom free and if possible get TSH, FT4 and FT3 checked altogether for a fuller picture.

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Thanks for that info, I have saved it. :)

I can only have a very small (50 mcg) amount of Levo before my free T4 shoots up over-range, yet my T3 stays low in range. Clearly I don't convert very well, despite upping my vits/minerals. My GP said I 'wouldn't get T3'. My TSH stays mid-range, and I am not well! So now I buy T3 to supplement the T4. There aren't any Endos near me and like Newday64 I wouldn't want to risk going to one only to find he/she is unsympathetic and ignorant of thyroid biochemistry. It's far simpler for me to manage my own health, but am worried about future supplies of T3 (what with Brexit looming) and even NDT if I end up needing to take that route.

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When I did that consultation I said in my actual response I had no faith in it whatsoever, that it was nothing more than a whitewash and the whole matter was a fait accompli. I was right.

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TSH110,

It wasn't a fait accompli because prescribing of T3 wasn't banned in England.

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@clutter I meant stopping it being prescribed was the agenda and this appears to have been achieved despite the consultation supposedly going our way. Or am I missing something here?

fait accompli

noun

a thing that has already happened or been decided before those affected hear about it, leaving them with no option but to accept it.

It feels that way to me.

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TSH110,

Well it is still being prescribed so that agenda hasn't been achieved has it?

Lyn Mynott flagged up concerns in healthunlocked.com/thyroidu...

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Clutter I hope it is never achieved, but my understanding of Nanaedrake’s link to Prescqipp it is to be made so difficult to get a prescription for T3 it will be virtually impossible to get it prescribed, even more so than it has been. What clout they have or if this is now NHS policy or if it can be challenged I can’t pretend to have any knowledge of and if I have misunderstood the situation with T3 prescribing as it stands now.

I just see the general trend of pushing us around and ramming T4 monotherapy down our gullets whether we like it or not and rubbishing any opposition or alternative view to its universal efficacy. If this is a war then we are loosing every battle despite all our efforts to change things to our favour. I am completely exasperated with it all but will persist in my protestations (MP; campaigns etc) at the injustice of it all.

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TSH110,

It's certainly not going to be any easier for new patients to be prescribed T3 and existing patients may still have a battle to prevent withdrawal of T3.

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TSH110 Persist, because it's still going to be very difficult. New patients in particular are going to find it very difficult to get T3. If you read some of the CCG documents on T3 prescribing, they refer to legacy prescribing meaning that people already on the drug can continue but new patients are not offered it. I don't know whether they will have to change their prescribing policies now but it will still depend on an Endocrinologist being willing to prescribe it and being willing to test FT3 levels which in my area they refuse unless you have Graves disease.

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Nanaedake

I will persist in contacting my MP who appears sympathetic and always responds. Looks like T4/T3 option will never be one I could access via the NHS which I have paid into fir nearly 40 years via NI contributions. I felt dire on T4 my life was not worth living. I have a partial DI02 impairmentbut not the full genetic problem with it. It might explain why I was so unwell on T4 and feel so much better on NDT but this is getting increasing difficult to purchase. The whole business is scandalous in my opinion.

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Hi all

So what to do if you have an endo like me that believes what he was told about T3 being the work of the devil. I have got him to concede that maybe if there was a reliable slow release version it might be of some benefit. I’m on a t4,t3 mix self med, he knows this and I have proved to be in much better health as a result, I even have a tsh of 1.8 to keep him happy. But there is no way in hell he will prescribe me t3 because he’s not a believer. The NHS can say what they want but if the endos are not retrained to believe it ain’t worth a lot. Rant over

Be well

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That doesn't look as good as I thought having read it. Has the NHS published the results yet? I can't find anything. I was already receiving it so do we still have to see an endocrinologist to get it back?

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Summer64,

See healthunlocked.com/thyroidu...

Who decided your prescription should be withdrawn?

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My GP but it was forced on him by the CCG.

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Thanks Clutter, that's much better then than I previously thought from the Presquipp paper. I have to try and contact my GP tomorrow to see if I can get a blood test as I think the Thybon is working too well for me, so I can tell him if he doesn't' know already.

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Summer64,

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

If your CCG didn't do a public consultation first you may be able to legally challenge their decision.

mills-reeve.com/files/Publi...

If you were told by a NHS endocrinologist that you need T3 you could write to your GP saying you think your GP is in breach of the GMS contract by not prescribing treatment a specialist has said you need. See the links below.

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

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Thanks Clutter. I will read through those tomorrow. I have made an official complaint and raised some of those issues.

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Summer64,

Good. Patients need to stand up for themselves now. Cost is obviously more important than our wellbeing to some doctors and CCGs.

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I am also getting worried now, as my medication is coming up for annual review. So far, I have been lucky and been kept on T3 (20 mcg of Lithyronine) and 200 mcg of T4 :(

When I was referred last year to a Endo, because of the T3 controversy, she point blanked refused the T3 and basically said it did not work and as I complained to the hospital because of her conduct, refuses to acknowledge and accept any referrals connected to T3 medication. Definitely does not want to see me again (I wonder why ;) Completely dismissed me - I was so angry.

My ranges show it is working and I feel fine on it. My TSH level which is always low due to having only a partial non working thyroid - I think the last time it was checked it was either 0.09 or 0.54.

I will be interested and worried about my forthcoming review and to see what happens. I have been on a combination of T3/T4 for more than twelve years.

Thanks for the article.

Take care everyone and we will continue to fight for the right to our medication! :)

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JOLLYDOLLY pity we can’t refuse to pay our NI contributions towards her obscene salary.

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So true - It was her words that made me feel like punching her. She said quote "It doesn't work it is dangerous, I am surprised you have not had a heart attack and that the money could be spent on more worthy causes!" Silly moo (politely she says, thinking something else) How dare she referred to us being less worthy than someone else. I was so very angry at the time, hence the reason I reported her, but she back tracked and made me out to be a liar - needless to say, they took her side.

:( :)

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JOLLYDOLLY They always close ranks to protect themselves in preference to those they are supposed to be caring for. By that absurd logic if it is so dangerous why not give a total thyroidectomy to the whole population to stop any danger of the T3 it makes causing all those heart attacks! Strange logic on the one hand it does nothing but on the other it causes myocardial infarction - a Jeckle and Hyde of a hormone! Talk about arguing black as white - they are supposed to have the finest brains of their peers in their specialist area yet she comes out with trollop like that which does not stand up to scrutiny. Our lives in their hands - makes me shudder to think of it. Better to stand up to her and see someone else! What other public service job would allow you cherry pick who you deal with.

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The ironic thing was TSH110, everything she said and the tests she ordered, came back in my favour. I even asked if she knew what it was like to have a thyroid condition and she silently said "no" with her head down.

I will keep quiet until they tell me I am no longer going to get it, but time will tell. I can't afford to buy it but I don't see why we should anyway because of Pharmaceutical greed and lack of knowledge or duty of care by certain individuals.

As I left the room she even had the audacity to say that "She didn't care, whether I took her advice or not, made no difference to her" - I know I told where to go, ending in "Off" and ending with a "Shame on you"

No empathy with some of these so called intelligent professionals, which is a shame for the truly dedicated ones. I have a lot of faith in the NHS as a rule but not on this subject.

You take care and keep in touch :)

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Mine was abruptly stopped so I got some with a private prescription from Germany. I've been on it for six to eight weeks now and for the last two weeks have had severe disabling dizziness which comes on an hour or two after I've taken it. I'm beginning to think it is connected so today I left it off and so far so good. I wonder if it's stronger or maybe doesn't conform to the safety standards of the UK one. Really want my old meds back.

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I've been on German T3 for a couple of months too and feel better on it than on NHS T3. You may be right that it's a bit stronger. The NHS T3 has such a short use by date and isn't in proper blister packs. Maybe we just all react differently!

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I will try and get a blood test done tomorrow to see what is happening. Someone did say that the Liothyronine hydrochloride is absorbed better than the Liothyronine Sodium so maybe that's it or it may not be related at all. My GP thought it was an inner ear infection but strange I was fine when I woke up and it came on an hour or two after taking my meds and then wore off by afternoon. Been fine today having not had it. I'll keep you posted.

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That is the dilemma isn't with buying from abroad as they appear to be higher doses - I think 25 mcg. So if I have to go down that road, (keeping everything crossed that I don't) - I would have to reduce my weekly dose to accommodate as the UK T3 is 20 mcg (if that makes sense). The trouble is we just do not know what we are getting if buying from abroad :(

I can remember having a conversation with my GP, can't remember if it was after the disastrous consultation with the Endo or not, but I can remember saying, that if I have to, I would buy from abroad and she was quite shocked that I would do that, but told her she and the powers that be, were giving myself and others like me no choice. Not that I am complaining, but 18 months after that consultation, I am still getting prescriptions for it. Perhaps I am on borrowed time, but we will see.

I know from past experience that if my T4 medication was too high, my eyes got really sore and I did not feel right. So now I know I am on the right dose for me.

The trouble is everyone gets treated the same, regardless of your symptoms and severity. I have a partial non working thyroid (born with it that way), so although I can ive without my thyroid working, obviously none of us can live without the hormones. It can't get more serious than that, but these Professionally trained individuals just don't get it! :(

You take care and becareful :)

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My pharmacist was on levothyroxine for years and was not well. Recently her endo prescribed t3 and she is a different woman now. She looks well and focused and the weight that had been increasing over the years is returning to a healthy level. When I obtained my last prescription for t4, levothyroxine she was worried that she may be taken back of it as the price has just shot up from five pounds for a months supply to three hundred pounds. How can whoever increases the prices of medication justify this cruel increase. I feel that my chances of obtaining this medication are growing too far out of my reach now and for many others that are taking t4 but still feel unwell.

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How can whoever increases the prices of medication justify this cruel increase.

They need a new yacht. And they've always fancied having their own private jet.

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Hmm most interesting, I have been on prescription thyroxine for a few years now, main reason being on a drug called Amioderone, fit Atrial Fibrillation this drug destroyed my thyroid without a doubt, I had my annual mot I call it last week, and had my blood work done previous to the medication check up

Seems my thyroid bloods have not been checked since 2015,

Now I have been feeling so I’ll these last months, cannot sleep absolutely zero energy

Breathlessness , and a host of other symptoms, my cardiologist says it is not heart related, and i was at a loss to imagine why I’m feeling so awful,

I’ve recently had a pacemaker implant folllowed by an AV node ablation for very low HR and untreatable AF

This was the end I thought of a long road to feeling like my old self ,

But as I read you’re articles, the more I’m convinced it’s all down to my thyroid

Well I have an app for bloood work and follow up with GP

Wondering what I should ask about T3

And the fact m try thyroxine seems to have stopped working?

Any advice would be appreciated..

I cannot ensure this awful depression and tiredness much longer

Thank you 🙂

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Roseyuk Have you had recent blood tests for thyroid function? If so, why not create a new post with the results and the laboratory ranges and people might be able to give you some help with what's happening in terms of thyroid function?

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My endo agrees that I need T3 but can only give me a private prescription which would cost me £500 for 3 months supply. I couldn't afford to do this and sought help from yourselves and was private messaged with a European supplier which was great and I have used them for 2 years now, I have gone from being housebound for over a year, relying on online shopping, back to gardening, cleaning the gutters and doing my own supermarket shopping. Unfortunately my supplier has let me down, I have paid for my order but received no T3; they tell me they are busy and experiencing delay etc, etc... Am I to understand (I have a bit of a fuzzy brain at the moment due to 4 days without T3) that if my endo gives me an nhs prescription I will be able to get T3 from my local pharmacy or are some CCG's allowed to opt out, ours are a pretty miserable lot. Does the decision lie with my endo or does he have to consult with the CCG? In the meantime I am without T3 and I know that I will be very unwell very soon.

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Did your Endocrinologist put your need for T3 in writing? If so, you might have a better case to get T3 prescribed. If you have an NHS prescription you should be able to get T3 from a pharmacy but you might need to shop around. I've found an independent pharmacy for levothyroxine because I want to stay on the same type and independents are not tied into a single supplier contract. I'm not sure how free Endo's are to ignore CCG rulings, it might depend on whether you can see an Endo out of area?

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It's the prescription that is hard to get. Once you get that you can buy T3 from anywhere. Google the suppliers, most of them require a prescription.

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I take 209 mcgs of levethyroxine, so if you think 125 mcg is a lot, it isn’t. I also take 30 mcgs if liothyronine. I did take 40 as I was seen by Dr Skinner, who unfortunately passed away. I then saw an Endo in Halifax who was more bothered my t3 was above 6.5 it was 6.9 and said he would discharge me if I didn’t reduce it. I also have to take hydrocortisone, this was the reason I saw him last year, due to being quite ill. He can’t tell me if I have Addisons or Hypopituitarism as he says the nhs won’t pay for the tests. Despicable treatment. Not sure if this is just my CCG as they are looking at closing one hospital due to the PFI in another town draining the tax payer financially. My vit D is low, but they don’t prescribe any longer, I had an MRI on my pituitary, but no ct scan on my adrenals. All he cares about is my t3 no is below their recommended guidelines. So much for patient care.

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