You will see from previous posts that I've found a very understanding endocrinologist who wrote to my GP and said I am one of the small minority of patients who can't take T4, that he is to get blood tests done for my next appt and the tests must test T3.
So I visited my GP after he received the letter and after I had been taking the increased T3 along with blood test results. The T3 level was top of range. T4 very low understandably and my TSH above range. I asked my GP what he thought of the results and he said Ineeded to take T4 regardless of what the endo said. I asked him if I could get T3 prescribed and he said he would have to ask the CCG. I went back to the endo and he increased my T3 dose again.
My GP had asked me to contact him tomorrow to find out if he'd been successful at getting me T3 (50mcg per day.)
So, wish me luck when I contact him tomorrow but as I'm doubtful he would have fought my corner what can I say to him? Can someone explain the named patient concept and whether it makes any difference to the price to the NHS or takes responsibility from the GP?
thank you
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Numberone1
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Your GP also doesn't understand the concept that if the patient cannot convert any T4 to sufficient T3, we remain unwell. It is the FT3 and FT4 he should measure.
If he refuses the medication that has been suggested on grounds of cost, then you can take it up with your mp and your local patient care trust.... There is plenty of info, including a 20 year study which says t3 is safe.
If he refuses on grounds of efficacy or safety, you could remind him he is a general practitioner and the endocrinologist is the expert..... But be prepared to look for another doc....
Thank you this is interesting. The endo has stated I am one of the small group of people who can't convert T4 to T3 hence my need to take it. I have been buying it online. Im not sure Id threaten MP but I think Id say something about local patient care trust - thank you for that idea. Where would I find the 20 year study although obviously if my NHSs endo has already told him my position, presumable I don't have to prove it.
The problem is cost as GPs have to decide who gets what treatments with limited budgets. I get free NHS T3 but it now costs over £10,000 per annum to keep me well. He now does me a private prescription and I buy it from Germany for £300 per annum which I am lucky enough to be able to afford. I can't bear using that amount of NHS funds up. I also do better on German Thybon Henning T3 What we need to sort is the cost of NHS T3 which is completely out of line with the whole world. The U.K. license is held by a company owned by two foreign guys whose company is based in India!
Hello, t3sortedme, so are you saying your NHS gp writes you a private script that you get fulfilled in Germany? If so, does your gp charge you for your private prescription? And are you using a German online pharmacy or do you go there in person? Very interested. Thanks in advance.
Yes, he writes the prescription for free as I am saving the NHS money. I order on line and post the prescription (3days transit). They check it and process the order (1 day). It arrived to me by DHL (3 days). I have ordered 100 tablets each time. Cost €30.15 for 100 tablets and €8 handling and shipping. Very easy.
Dear T3sortedme, that is very interesting, thank you for your reply. Presumably it is thybon 20mcg tabs you are receiving that costs 30 euros for a 100? If so, that would be a bit expensive for me (I would take 3 a day, therefore costing about £100/month....I would need to take my private script to a cheaper european prarmacy. Our creative ways of getting our needs met!
I use 20mcg tablets and 3 a day is what I am on. That's just under £1 per day for the 3 tablets. £30 per month. They are bit cheaper if you buy larger quantities
Hi I live in the uk my endo prescribed thybon henning I got it for a month,my GP refused to prescribe anymore because it's unlicensed in the UK.
I felt better on it,I'm now prescribed Mercury pharma t3 which I think is rubbish,could you email me the website you send your private prescription I would be more than happy to buy it.
Are you ladies from another country? I ask this because I have never come across the medication that you mention. My hypothyroidism was diagnosed about 15 years ago, and all I take for it is Levothyroxine. I sleep very badly, have lost an enormous amount of weight, and am diabetic as well. Nothing seems to work. I also have chronic IBS. Can anyone advise a Bewildered Brit?
Before the introduction of levothyroxine along with the blood tests the only hormone replacement was Natural Dessicated Thyroid Hormone, first introduced in 1892. Before that we died an awful death.
From 1892 up to the early 60's there appears to have been no CFS, Fibro etc.
Big pharma, particularly in the USA was very persuasive in the introduction of levo as the 'perfect' replacement and along with the blood tests for diagnosis alone they have made millions (if not billions) and monetary incentives to doctors etc and levo was accepted as perfect replacement for hypothyroidism.
Before the blood tests all doctors diagnosed upon the clinical symptoms of the patient alone and were given a trial of NDT (natural dessicated thyroid hormones - made from pigs thyroid glands) which contains all of the hormones our own gland would produce.
UK doctors who still diagnosed by patients' symptoms and prescribed NDT were then prosecuted by the authorities and lost their licences if they prescribed other than levothyroxine.
Dr Barry Peatfield was one and Dr Skinner was another and there were others. Dr S was a virologist and he was being sent patients with 'myserious' illnesses and he realised most were hypothyroid but because their bloods didn't fit within the TSH they were diagnosed with 'another' and given medication for it and not the hormones they desperately needed. Some were diagnosed with mental conditions and hospitalised etc etc etc.
You will see from this link the persecution which took place so therefore other doctors had to toe the official line.
The fact that now, with the internet too, people throughout the world who haven't fully recovered on levothyroxine (and millions seem to have found it helpful but they wouldn't be on the internet looking for info) have been searching as to why they either remain undiagnosed but with awful clinical symptoms. Some have been in mental hospitals. Some have committed suicide.
Doctors have lost their skill. Mothers of young children know when their child is out of sorts instinctively but now we, hypo patients (me included remained undiagnosed) are also given too low a dose to keep the TSH in 'range'. The usual doses of NDT were between 200 and 400mcg and Dr S said we the patients were in a parlous situation. He died of a stroke no doubt brought about by appearing before the GMC about 7 times and it certainly wasn't his more than 2,500 patients who sent testimonials to the GMC that he had saved their lives.
Also the Associations always state that we have to be diagnosed only by the TSH. UK says it has to be 10 before diagnosis. They don't recognise that levo is not always the best hormone for many who have a daily struggle with their health and doctor pronounces we have a mental problem because our TSH is 'fine'.
I'd think we'd call them 'dyed in the wool' as they obviously do not read up-to-date scientific information. Neither do they listen to their patients who cannot recover on levo at all but are willing to prescribe anti-depressants, pain relief or anything other than a decent thyroid hormone.
That's why quite a number on this forum 'Do It Themselves' by sourcing their own thyroid hormones.
They are mainly male who don't listen to their 'mainly female' hypothyroid patients and only go by the TSH and if it is within the 'range' - even the top - they state we're on a sufficient dose and do NOT give an increse to bring the TSH down to 1 or lower.
Hi susieru, are you diabetes 2? If so you sound like my mum with yr symptoms. She was misdiagnosed with diabetes 2 but turned out she had LADA (latent autoimmune diabetes in adults) Diabetes One. She has improved so much now on insulin and to her surprise is even managing very well on a lower dose of levo. A positive test for GAD antibodies indicates LADA.
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