Hello: I've been wondering how many of us on this forum have been refused monitoring and routine thyroid blood tests by the Endocrinology department of the hospital they'd been attending.
I'd been discharged a few years ago and told that it was hospital policy not to treat patients who acquired their thyroid meds over the internet. At the point this happened it didn't make any difference to me as I'd been managing the condition on my own for some time but I did find it useful to have some professional input. I use NDT meds.
Anyway, I decided to see my GP recently and ask for a referral back to the same Endocrinology department at my local hospital telling my GP that my preference was to take NDT.
The GP has recently sent me a text she’s received from the hospital giving the following information “'The Endocrine team do not condone use of unconventional thyroid hormone supplements as per national and international guidance, and as per departmental policy don't monitor such patients through their service any longer”.
I’m not surprised by this response but feel concerned about what responsibility the NHS has for those of us with a diagnosis of Hypothyroidism and using NDT. I’ve no idea what would happen if I needed to be admitted as an inpatient.
The other thing that bugs me is having to fund my own testing on an ongoing basis when I feel that this shouldn’t be my responsibility especially as I’m now a pensioner. I no longer bother with a private prescription and obtain the meds from a reputable source.
I’m undecided on a course of action at the moment and don’t feel that the Patient Advice and Liaison Service (PALS) would be any use, I’ve also considered seeing my local Councillor.
I know I’m not alone, we are discarded and neglected by the NHS but I find that as I’m getting older the situation is starting to concern me. Fortunately, my health is generally okay and I’m very happy on NDT meds but, I don’t see why the NHS is allowed to abandon us this way.
Sorry for the long rant.
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Maddie
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Maddie, Most hypo patients never get to see an endocrinologist so hospital involvement in hypo care is often nil as the norm. For those on a stable dose whose TSH ( and if you're lucky FT4will also have been tested) falls anywhere within range then all they get from the GP is an annual blood test which never includes FT3. So in that respect you are receiving the same treatment as most other hypos!NDT is not licensed for use in the UK so any doctor prescribing it or condoning its use in any way is doing so at their personal responsibility and risk. This is why they are handling you like a hot potato.
I have recently become stable on NDT. I have a private prescription from a private Endocrinologist and have to do private blood tests to monitor levels. I hate the whole ‘private’ business but NHS in my area has treated me so poorly I had no choice and didn’t feel confident enough to go it alone.Your point about what happens if you are admitted to hospital is an important one. This has crossed my mind briefly but you have prompted me to think about this more seriously. Would the NHS administer NDT if we were unable to do it ourselves? I’m wondering if anyone has had experience of this?
I suspect the answer is no. From what I've seen, when you go into hospital they 'prescribe' your medication from their own pharmacy, so it will probably only be what your GP has prescribed. Hospital staff won't take responsibility for administering unlicensed medication. And because you're under their care at that time, they need to know what you're taking so they might even lock your own medication away.
Last time I was in Hospital for just over a week, they let me administer my own, but then I was capable of doing this. If we are ever unable to do this, then what!
As I have reported before on here, when my late husband was in ITU after heart surgery he wasn’t given his T3 meds despite it being prescribed and on his list of meds. The reason being the hospital didn’t agree with the use of T3. After 5 days I found out and kicked off, the ITU Dr agreed to prescribe it but the pharmacy didn’t have any in stock, my husband had his own supply with him but being unconscious and on a ventilator he couldn’t do anything about it. So 7 days without T3 he deteriorated and this contributed to his organs failing and his death 4 weeks later.
If the hospital don’t agree with, know about or aren’t prepared to prescribe a particular med you are in trouble !
That's kind of weird as T3 is standard treatment with cardiac surgery (which causes low T4/T3 syndrome aka sick euthyroid syndrome - SES). Tons of research available for both adults and pediatrics.
I have Graves Disease and went through RAI thyroid ablation in 2005 and became extremely unwell in around 2014/15 - details on my profile page.
Having been refused both T3 and NDT through the NHS I started self medicating and am now over 4 years on NDT and much improved.
I wrote to my surgery advising them of my decision to self medicate and said i was happy to still comply with a yearly thyroid function test but that it would need to be a TSH, T3 and T4 reading to have any medical value.
I heard nothing back, not even an acknowledgement of receipt of letter but around 2 years later I noticed T4 - Levothyroxine dropped off my prescription.
My prescription is now just 2 product lines both of which I believe will soon be dropped as I read these are now deemed able to be purchased OTC.
I am now 75 and need to save for my medications, all of which were only necessary after RAI thyroid ablation, a treatment option that I believe should be banned.
I too feel out in the wilderness but at least I'm more well now, than when in the NHS system and I have had no need to see a doctor since around 2017.
You're not alone. Lots of us have the same problem. The NHS will only take responsibility for what you're prescribed through the NHS standard prescribing pathway. Your local Councillor won't be able to do anything.
It is an awful situation for you (us all really !) especially as NDT was used back in the 1850's to save lives - but I suppose you have to think of it from their side too - they have insurance policies to maintain their practice and if something is either not given the green light by their associations or indeed the Government guidelines then they are at risk if anything goes wrong of losing their licences. It is a disgraceful situation with regard to thyroid care - deliberately being kept down as the amount of people out their who would need care - that although would stop other NHS departments having to care for them costing the NHS billions and billions - at least endo's aren't bothered by the upsurge.
25 years ago I fought to get diagnosed - took 15 years and I had to go out of the country - my endo at a major hospital in London still refuses to accept that the 100 symptoms on Thyroid UK are anything to do with the Thyroid and believe it or not - I had apart from the mental health ones - every one of them ! Everything by blood test only which caused my problem as my blood tests were normal even though I was dangerously ill.
When I saw Dr. Tofts video clip where he talked about NDT being used at levels of 200 - years ago etc. which resulted in T3 being adequate it did give me a sense of - well I was right all along - particularly as I wrote a scathing letter to Dr. Toft about his adherence to TSH levels etc. when he was President of Thyroid Association (can't remember the name off hand) - it would appear my letter hit home as after his retirement he was now on our side. Trouble is he is now retired - and just one man. But I do notice that several of these 'Presidents' are now in private practice prescribing T3 etc.
It is my opinion that endocrinology is holding back medical science - my Mother had an enlarged heart for years which caused her many health issues - she was kept off thyroid treatment even though she was showing she needed it because she had an anueirsm on her spleen - so I can understand where they were coming from - boy did she suffer with her health from aged 50 to 80 - you name it she had it. She moved to Suffolk and her new GP did not really understand her health issues with regard to her splenic problems (they could have killed her actually !) and gave her a small dose of thyroid hormone - her health improved and when she had a heart scan she asked how her 'enlarged heart' was looking - they said - what enlarged heart - I rest my case.
How many other medical areas are being denied this type of information - heart specialists etc. etc. - it is in my opinion the biggest scandal in medical history and they should be ashamed of themselves.
Until some rather famous people start kicking off if they get thyroid issues like they have with HRT - I don't think it will change - it will come - they will have to treat symptoms and update their knowledge eventually - I don't think it is that far off for others not sure for us though - so we will have to keep keeping on ..........and on - as pioneers.
You are not alone....the whole treatment protocol for thyroid disease is a mess and excludes those of us who need "special care" from appropriate care.. There is no clear evidence that anyone out there with responsibility for patient care is prepared to actually be responsible for the cohort of thyroid patients who are heartlessly dumped by the NHS.....
because they do not fit into the current guidelines.
This ( in my opinion) is both medically and morally corrupt!
The science is out there but appears to be ignored....
How many times have we heard those in high places (with backs against the wall) say in relation to covid/ medical care....
" We must listen to the science".
Thyroid science appears to fall on deaf ears!
We may not be an easy group to treat....but are we alone in that?
No!
I've seen the NHS work to provide , what I can only describe as miraculous care, for ifamily member.
The medical team stopped at nothing to turn a close to death tiny patient with a very rare condition into a healthy, energetic happy, intelligent growing child...
I watched this happen
It can be done if there is a will....and the expertise
If they are capable of climbing this mountain then, in comparison, treating complex thyroid conditions seems like a dawdle
Where is that same will and expertise.
Ironic, isn't it....
Many of us are capable of doing the research and successfully treating ourselves.....
because we have been left with our backs to the wall.
I need high dose T3-only to overcome a form of Thyroid Hormone Resistance which I've probably had all my life....
and my grandmother before me!
I'm not alone.
The endo I saw dismissed RTH in any form and told me I needed levo....
which after 20 +years had left me barely able to function.
Lovely man....useless endo.
I told him I would treat myself......etc etc!
I'm almost aged 77 and function reasonably welll now
My lovely GP now accepts that I self medicate and leaves me to it.
But we come to the crunch...
She asked, "What will you do if you have to go into hospital or into care?"
I honestly believe this was genuine concern.
I had only one response...
"Without T3 I will die"....
Silence!
The body will start to shut down as Dr Orr brilliantly discovered over 100 years ago.
A Dr Murray in 1898 gave his myxoedema patients ground-up thyroid gland from healthy animals...
These apparently terminally ill patients recovered!
Dr Hertoghe continued this work and NDT followed.
They used " the science".
They need to use " the science" NOW
It's not new, it's out there...
But the will to use it is not there and its a scandal of monumental proportion.
Sadly T3 is not always a quick fix, it can take a very longbtime to find one's therapeutic dose....
Medics need to persist!
Until the decision makers sitting on their high horses accept that they are wrong and have been for decades....
Little will change.
So far strong petitions to both Westminster and Holyrood have failed to change much..
The will is not there....
and thyroid patients suffer, and die, as a consequence.
It beggars belief.
P.ease medics....listen to the science.
And please understand that hypothyroidism can be cellular as well as glandular...but that's another rant!
I too take NDT, but never told my G.P./Endo' so still getting free NHS blood tests and manage myself.
What happens if I end up in hospital for any reason, I suppose I will have to cross that bridge if that happens, or just accept that they will give me Levothyroxine and hopefully get home and look after myself again.
Quite possible in the not too distant future there won't even be an NHS.
I would just like to say that I am an honest person and do not condone lying, but there are sometimes when it's necessary. I go to the GP and collect my prescription for Levo plus T3.I actually use Thyroid s which I purchase online myself. I also collect my BP pills once a month, but in fact use Hawthorn only again which I purchase myself. My GP is not at all easy to deal with, in fact he can be very rude. I find this works for me, in fact I am seeing him again today, he is happy I am happy. I take a private blood test once every year. I also have one from the GP. I am in fact not lying just maybe a little crafty.
Hi I had never had high blood pressure in my life until I caught an UTI which caused me to lose hours of sleep. After it was gone I still lacked sleep which caused the high blood pressure. I landed up in A & E and was then put on CCB by my GP. I never like using medications so I looked into something else. I was only on CCB for two weeks which made me ill. I read that in Germany the GP's prescribe Hawthorn and tried it. My blood pressure is down to about 117/78. The 78 is because I had been ill with the UTI and had became unfit. Down 20/30 places in about 1 month. Germans are all for NDT and Hawthorn. Anyway to answer your question I use Jarrows Hawthorn capsules 100 per bottle.
500 milligrams. I take one with breakfast and another at teatime. I started with one and
after about 10 days went onto 2 per day.
Sometimes natural things take longer to work than medications but I was lucky and am now sleeping OK too.
Yes thank you I have. I have only ever had one whilst back in the UK for two years.I went to the GP with four samples which came back negative. After a few months I spoke privately to Mr Ahed Ali in Leeds he sent me for a broth test and then I was placed on the correct antibiotics. I had lost over 22 lbs in weight in six weeks but all the GP gave me was a reply that I could only have 3 days antibiotics. The urine test which GP's use in the UK is from 1950's so not fit for purpose. If it wasn't for Mr Ali
I could have remained very ill. It has taken me over two years to fully recover. I am glad to be back in France. Because I knew nothing about UTI's I never realised that
they could be so dangerous. I am so glad that you are well now. I have learnt that
that correct antibiotic should always be used to the kill the bacteria.
Glad to hear that you are on the road to recovery - yes you are right the main reason there are so many people with an embedded superbug in their bladder is that they were only given 3 days antibiotics at the beginning of their run with UTI's - the bug got stronger - no-one should be given less than 7/10 days antibiotics for a UTI. wishing you continued health !
Simples. Just don't tell them what you are doing, and get the free blood tests and any others you might need. I have been taking NDT/self medicating for about 8 years and never told my G.P.
I am in the same boat. I manage my condition myself and as I get older I do worry about what would happen if I found myself in hospital. I know for sure they wouldn’t willingly allow me to take the Metavive and Adrenavive I rely on. The only solution I can come up with is to get my children to bring it to me but in certain conditions that wouldn’t be an option. It’s a terrifying situation to be forced into.
I think the Davina/HRT publicity route is the only way to get our story out there. Is there anyone with PR experience out there who could get her to pick up the issue for us? It is another case of a mainly woman’s problem being ignored.
I doubt she would be interested. Unless you are in the same situation, it's extremely difficult to understand. Davina suffered without HRT, so she 'gets that'. I think she takes levo, and obviously does fantastically well on it so can't champion our cause because she has no personal expereince.
I agree we all put our hands together when we heard Oprah was a thyroid patient but she went to the dark side and said it was nothing to do with her thyroid her weight gain. We need someone who has had their lives ruined career wise - weight gain etc. in the public eye - plenty of us but we need someone who will have the clout to go public and on TV like Davina. I have been writing to so many people over the years but got no-where - look at Kate Bush and Pierce Brosnan's lovely wife - both look thyroidy to me. Google them and you will see what I mean.
I fully agree with you Maddie . I am under local Endo who has said he is willing to monitor me and I have been on NDT since 2018, with him seeing me about once every 8 months. He is happy with my blood tests at present, but of course, this is only so long as TSH stays in range.
When NHS were the ones to take your Thyroid Gland away, for no other reason than it was overactive and not being treated for such, then I think they have a Duty of Care to you.
The fear of not having NDT or T3 administered in hospital is one of the big issues in self medicating I think Or rather, it is not a fear but just a straightforward issue.
The other side of it is that administering medication in hospital is pretty terrible anyway. My own experience in hospital while taking Levothyroxine is they were very negligent about administering, and didn't give me my pain medication properly, either. We may not even be worse off.
I've also had a thyroidectomy, and it seems particularly shocking they can remove our thyroid saying life will be better, but then they aren't really responsible to make sure it is better. I feel they were very attentive before my thyroidectomy... But then of course they have no interest afterwards.
I agree with others who say most thyroid patients don't see an Endo. My understanding is that usually it is only for patients taking T3. The Endo won't know any more than your GP anyway. Theoretically thyroid patients should have a thyroid test every year through their GP, but I'm not sure how common it is that even that happens. If anything it can be a danger as it gives an opportunity for a doctor to get a whim they want to mess up your dose
I have just now sent an e mail to my local MP who is a Dr - although physciatry not a GP. I suddenly had a lightbulb moment - surely this needs bringing up 'in the house' which he may do - that people may be at risk if they don't get the meds they need when in hospital. Anyone able to give me permission to use their experience in hospital that could have been detrimental.
That light bulb has already glowed brightly...and gone dim!!.
Do you know that petitions on this issue have been lodged and fairly extensively debated in both Westminster and Holyrood?I , for one, wrote to every MP in Scotland at the time, had a few lovely/ understanding/ supportive responses but the rest went largely ignored.
At best, in hospital levothyroxine would be given....at worst,nothing!
Without T3 my body would slowly shut down...I understand!!
When I moved from Cumbria(where I had had 2 enlightened female GPs)to East Sussex,I made the error of believing my GP would be up-to-speed on NDT.Big mistake!He refused to have me on his books unless I stopped NDT,went onto thyroxine & dropped my starting dose to 50mcgs(I was on 125mcgs for 17 years before adding T3 & later moving to NDT)I left the practise just before the pandemic started & my new practise doesn't seem to have me registered as a hypothyroid patient requiring medication & testing.I am not bringing this to their attention because I can't face the fuss of a having a TSH below 1.0.
I buy my own NDT & pay for my own thyroid blood checks annually.
I am 72 & retired & the cost of NDT has gone up enormously.I am lucky that I can afford these at present.I can't find an NHS dentist either & dental costs are now horrendous.
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