I would very much appreciate any advice regarding the Specialist Endocrinologist trying to take me off T3.
I have been well on T3 for twelve years with the exception of when T4 is introduced, which has now been sixteen times. I get extreme unwell and just don't have any quality of life at all.
Due to the CCG's instructions my GP has stopped prescribing me T3 and does not want to prescribe on the grounds that it will affect my heart and bones.
The Endo I have been seeing for a few years is now prescribing T3 for me which I appreciate but the Specialist Endocrinologist assigned to take me off T3 is looking for reasons to stop the T3.
I attended a two hour consultation with him with a good friend in December in which he told me I should stop taking T3 for some of the following reasons :
My heart would be affected ( stroke )
My bones would be affected
I was imagining the symptoms on T4
He conducted some tests after the consultation. He has sent me some results back as requested and all are ok.
A Bone Density scan (dexa ) was done approx a year ago. The Osteoporosis Society tell me my results show that my bones are very good considering my age and T3 is not one of the drugs they consider to harm the bones.
Yet this endo has written to my GP to say T3 affecting the bones would be a reason to take a patient off it as the affects are unacceptable.
I have no reason to imagine my symptoms and that they started on the onset of hypothyroidism in 2007. Presented letters from previous Endos stating I get extremely unwell on T4.
The Specialist Endocrinologist has asked me to send him a picture of the container of my T3 and the patient information sheet as he wants to compare ingredients to T4 various brands to establish if I am allergic to any ingredients.
I suffer from multiple allergies to cosmetics, fragrances and various other substances. The endo tried to tell me i was imagining these allergies. I showed him the letter from the Allergy Consultant. Symptoms from allergies are different to the ones I experience when taking T4.
I am not lactose Intolerant.
He suggested I may have problems with magnesium stearate but this is not the case as it is contained in the T3 I take.
I do not have any heart problems.
He also told me T3 was very cheap to buy from France.
I am constantly worried that he won't give up until he gets me off the T3 and wondered if any of you good people could advise me on this nightmare situation.
Is it true that sometimes there is no reason why some people just can't tolerate T4 or does there have to be a reason.
I feel and look so much better as for a few months I have been left alone to take T3.
Apologies for the length of my post.
Many thanks.
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TSH86
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I can't answer your questions as to the politics of T3 prescription, but I can tell you that I am someone who cannot tolerate T4, and I have no idea why because I don't have a conversion problem. And, that goes for synthetic T4 and T4 in NDT. I can only be well on T3 monotherapy. I confess, I haven't done an in-depth study of the fillers, but I have tried most brands of T3, and most brands of NDT. The NDT affected me badly, but I'm find on any brand of T3. But, I cannot tell you why, I'm afraid.
Just how much evidence does this endo want? He doesn't seem to care a flying fig about you, he just wants to stop the T3 prescription, presumably because he's been told to.
And I've very puzzled by this
He also told me T3 was very cheap to buy from France.
Why did he bother telling you that? It's almost as if he's saying that he doesn't want you to have T3 prescribed on the NHS but you can go and get it in France. Does he know that you need a prescription in France (I think greygoose could confirm that).
I just don't know what else to say, I'm absolutely hopping mad on your behalf, why wont they believe their patients?
I'm afraid your "Specialist Endocrinologist" is an utterly Class 1 ignorant specimen of his/her profession. I don't often comment directly on a patient but this advice and attempt to reverse a perfectly good situation that apparently is stable and adequate longterm is beyond unethical. He/she should be told in no uncertain terms that after 12 stable years on T3, there is no way that changing to T4 only can have other than catastrophic implications for health. He has the completely mistaken idea that your body can change "just like that" to altered medication. This is strictly NOT the case; your body has become powerfully and almost irreversibly adapted to T3 over the years and will not willingly revert to normality with T4 only. His allegations about bones and heart are truely hogwash. based on extremely badly done trials that even contradict themselves and show only small effects where they show any at all. What a wonderfully irrational judgement, if that is the right word, saying you are in danger of osteoporosis when you patently haven't got it after 12 years on T3. The man or woman is not fit to practice if this is their ability. You must for the sake of your health resist this terrible advice and procure if you can T3 privately and leave the endo entirely.
I recall someone wrote the other day, that it is with Matt Hancock.
I had the same experience after 9 yrs on T3/T4 combo, of my T3 being withdrawn, even though I've tested positive for one of the DIO2 variations impacting conversion, obesity, and insulin resistance; so I feel for you. In my case though, I even have the support of two Endos that it should be reinstated, yet the CCG still says no.
MaisieGray, I am in the same situation that my GP wants me to come off my t3/t4 combo and switch to T4 after being on it for 13 years and armour thyroid for 7 years previous to that. I am so worried. May I ask how you are managing on just T4? Many thanks.
anniekims I'm sorry to hear that. My T3 was stopped without warning at the same time as my T4 was reduced from 125 mcg to 75 mcg, so over time it increasingly took its effect on my system. With the effect of the DIO2 polymorphism also playing out too, & on a reduced dose of Levo my FT3 began dropping, as did my FT4, until my FT3 was, I think, 3.2 in a range that began 3.1. I was without T3 for about a year until my GP wrote me a private prescription for Thybon Henning T3 at the request of my Endo, who also asked him to seek reinstatement of my NHS T3 on a named patient basis (which he did with the least effort possible, and so it was refused). So I'm still on my self-paid for Liothyronine Hydrochloride, which I find really good, with no obvious difference from the UK's L. Sodium. The problem is that I have to pay for it, albeit at far less cost than had I used my prescription in the UK; and the source will come to an end with Brexit, so it's only a temporary reprieve.
Thank you MaisieGray for your reply. I am sorry your T3 was withdrawn for a year and now you have the risk that Brexit will stop your current private prescription you finally managed to access. Is that a definite, or if No Deal goes ahead? . As well as your blood tests showing your levels were dropping, did you clinically feel worse the year you were not on any T3? Thank you.
The private prescription itself won't be affected as it comes from my NHS GP; but other EU countries will no longer have to respect current reciprocity guidelines, regarding dispensing, if we are out; and a couple of German pharmacists have already decided not to dispense, even in advance of Brexit. But I'm not up to speed with the No Deal debate I'm afraid.
Yes, I definitely felt worse over time, without T3, corresponding with my levels falling. It was a gradual rather than sudden decline as I'm not hypersensitive to changes, but I was very definitely unwell when I eventually started the Thybon Henning.
Sorry for not replying earlier. Thank you for your detailed and helpful reply. I am sorry you did indeed feel worse over time coming off T3.
Excuse my ignorance but when you say a couple of German pharmacists have decided to not dispense in anticipation of Brexit, is a lot of the T4 we obtain in the UK made in mainland European factories? Many thanks.
Thanks to all and Diogenes your post is just excellent and I have some ideas as to what I will write to this imbecile if he takes me off a medication that has given me my life.
It will not be the end of this absolutely u necessary struggle / fight.
I am soooooooo angry for you - I was already disillusioned and disappointed in my experience with Graves post RAI and I'll now add disgusted to my list of adjectives -
it is truly scary that there are such idiots presuming to be doctors.
I'm so sorry that you have even had to go through such a tormented time - I thought the Spanish Inquisition was disbanded in the 1800s.
Take good care, you know you're body, wonder if a newspaper might like to pick this up ?
Thanks. I think going to a newspaper is a good idea if necessary. I have a paper trail of a lot discussed. Shame I couldn't record the unbearable 2 hrs consultation
I've been tweeting Matt Hancock like crazy and my friend, whose MP he is, has emailed him twice - silence on all fronts.
From what patients report here, and elsewhere, it seems we have the veritable postcode lottery going on - some folks even now, are seemingly having it offered to them. Others are being allowed to continue with it, some are being refused it, and of course, others are having it taken away. There is no logic to the decisions being made, and certainly no equity - yet there is a single RMOC prescriptions guidelines paper on it ...... Grrrrrr
I’m so sorry you’ve had to go through this. There are so many similar stories on here and they make me want to kick and scream and shout and cry. All of us on here know how devastating an undertreated or badly treated thyroid problem is and how it affects quality of life.
This endo is clearly an arch-tw*t, mindlessly following orders from above. You’ve been on T3 and been fit and healthy for TWELVE years! Not 12 months or 12 weeks! I think you would have had that stroke or your bones would have crumbled by now!
And to say you ‘imagine your symptoms on T4’ is the one of the most personal and deeply insulting comments I have heard anyone report from an endo (plenty of idiotic comments reported though.) He is basically suggesting you are mad and don’t know your own body. Does he think you see fairies too? How dare he say such a thing! I’m outraged! In itself this comment surely warrants a formal complaint besides the fact he is trying to make you ill and not even following the dumbass guidelines on stopping T3 prescriptions that recognise some people still have symptoms on T4 monotherapy!
I wish you luck in this battle. Use the excellent advice on this site to help you. Complain to the endo who prescribes for you and ask if he will support you, to PALs, to your MP, GP everyone! Don’t let this b*st*rd make you ill. 🤸🏿♀️#fightforyourthyroid
Your confidence shows through in your original post, stand tall, you know you are right.
It's all this the bullying, and the presumed respect we are meant to have for these doctors.
If, we are even allowed a referral - I'm staying away.
My anger at your situation has thrown me back in time to Tony Hancock and the Blood Transfusion sitcom - I can't even remember it that well, but if it wasn't so serious your two hour audition for approval to continue to take a hormone that you have been taking for the last 12 years would be an excellent basis for another " I don't believe it " !!!!!!
Having seen an endo for the first time this week I'm interested in the reaction other people (on T3-only) got from their endos.
This is the second shocking post on the subject that I've read today..
My first thought was, "where did they find these people....in a joke shop"
I'm furious for you
How dare they play fast and loose with patients wellbeing.
I realise I may have found a good guy....he listened to everything I said, assured me he was not dismissing anything I said and said he was going to go away and research some of the issues I raised. So far, so good!
I've no idea what conclusion he will come to but if it involves changing my current medication then I'm afraid it will be a parting of the ways
Take advice from TUK....after decades of declining health that is what turned things round for me.
I think his comment about T3 being cheap in France completely invalidates all of his so called arguments against it. If it was really that dangerous he would never suggest you trying to source your own. It just makes it obvious it is nothing but cost driving his agenda to take you off T3. I'd really stress that if you need to put something in writing for whatever reason.
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