Just curious if anyone else has had t3 prescribed on the NHS then recently had it withdrawn?.. I'm based in Brighton. Endo prescribed it few years back as I had been scorcing it myself and had improvement and reduction of my Bradichardia symptoms.
Last endo phone appointment the Dr said somethong about the hospital withdrawing it and it's up to my GP.
Last prescription filled by gp then this prescription request they say no.. Only levothyroxine.. That liothyronine has to be by request to endocrinology.
The NHS are now also refusing T3 in blood tests. My GP cannot even select it.
If anyone has advice I'd much appreciate it. Anyone in Brighton with any advice on a NHS endo consultant or gp more favorable.
Also interested if this is a localised or national issue.
If anyone has links to medical evidence to send as ammunition to argue case for T3 testing and medication.. Much appreciated.
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MrsClanger
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I have been rejected three times to even get an appointment with an endo in Sussex. I have an upcoming appointment with a private endo in your area that is supposed to be interested in t4 to t3 conversion.
Hi.. I've replied in pm.. Might be time to spend money on treatment, I've been trying to avoid paying for private consultations as I feel very strongly that we should be fighting for the NHS to address and treat thyroid conditions more accurately.
If you have the NHS app there might be a note recoreded there that could give you a further clue. Suggest you try the ITT group on Facebook who are very good.
Thypee MrsClanger I help run ITT Improve Thyroid Treatment on Facebook. Do join us. We have a template letter to send to everyone needed eg Endo, ICB, PALS, MP, GP etc. It contains all the natinal guidance, and parliamentary statements saying patients can have T3 if T4 doesn't make them well.
ITT has several members from the Brighton area, who've had problems getting or keeping T3. I expect you can get advice from them
Ah thank you.. I will send that to them.. Although my TSH is surpressed which may be why they feel they can ( on the guide it says ' not routinely withdraw liothyronine for patients who feel well on liothyronine with a serum thyroid stimulating hormone (TSH) within the reference range (see BTA and SoC joint consensus statement)').
I've had to argue so many times that my Bradichardia gets bad if I reduce t jut e meds.. And my TSH never goes down when I do.
Thanks for this though.. I will give it my best shot.
If you are on Facebook contact Improve Thyroid Treatment group
I think they have a few members in Brighton area successfully argued their case
Meanwhile get yourself a private prescription to tide you over
Which brand of T3 are you taking and how much per day
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Thank you.. I'll defo get on this.I take 10 mcg of liothyronine in the morning ( the NHS one in two 5 mcg tablets Morningside brand ) with 75 mcg levothyroxine. ( mercury pharmacy 25 mcg tablets)
Then at 3 pm I take 12.5 g liothyronine ( half a 25 mcg tablet.. Tyromel brand ) that I scorce myself.
They don't test my T3 anymore but last week test results were..
Ft4
16 pmol/L
Range:11.1 - 22 pmol/L
TSH 0.01 ( undetectable)
If I run out of the 5 mcg liothyrone then I'll have to just take half a 25mcg tablet twice a day so increasing T3 by 2.5 mcg daily. As they won't test my T3 I've no idea if it will be too much.
If taking T3 it important always need to organise your own testing
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Essential to test vitamin D, folate, ferritin and B12 at least annually
What vitamin supplements are you taking
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:
Testing options and includes money off codes for private testing
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
As SD said. If down to cost that they have stopped your T3. Then ask to be prescribed 20mcg and split it. This will reduce their cost from £200 a month to £47.50, that's if I've done my maths correctly. It's worth a try.
After a very recent appointment with my GP, apart from the very ‘confused’ look when I explained why I needed T3, the reply and still quizzical look, “we are not allowed to prescribe T3”. No question, no reason, just absolute faith in that they are not allowed to prescribe. They really genuinely, seem to have no idea! It’s utterly accepted. My GP practice is allegedly one of the better ones in the area AND I have seen quite a few of the GPs now and this is definitely one of the better GPs. So it’s a wholly accepted, unquestioning practise of, no T3.
This is what we are up against. Frankly it’s brainwashing. How could this possibly be happening in a so-called ‘free’ country, where education (if not quite freely available these days) and enlightenment has historically, a great track record?
Honestly, if it was possible, these medics should be ashamed of themselves. What they are doing amounts to a kind of Nazi style eugenics or some form of genocide (femicide?). Brain fog perhaps? I don’t think there is a word for deliberately killing off mostly women, or at least deliberately making them completely useless (although any poor bloke who also suffers hypothyroidism is in for the same treatment). Anyway getting the life sucked out of you should have an official name!!
If anyone knows it or has suggestions I would be happy to know what it is.
Yup.. Femicide, ageist, patronising... Neglect... Just seen phisio and told that being in so much pain and weakness is because I don't excersize.. How ( TF!!) can I excersize when I can barely get dressed without screaming in pain. I think if you are female and have a condition they can't be bothered to understand... they just ignore you. I'm certain if I was a strapping 57 year old man she would gave ordered more investigation.
Sadly as a 57 year old man when struck down with Subacute Thyroiditis, thyrotoxicosis and now hypothyroid ever since, I can assure you I get the same treatment. When I went to see my GP last January as I felt so ill I couldn't function at all, she said "Time is a healer". Needless to say starting to self medicate to raise my T3 to a workable level.
I often think that with 143,000 members if we all put in to a fighting fund, we could employe some medical legal beagles to fight the NHS over the apparent neglect of thyroid patients. However as normal life seems to take 8 days a week just to maintain some normality, I and i'm sure most others here don't have the energy to pursue such a thought.
Because the discrimination is hard baked into the medical system, it means that it isn't discrimination against only women, it is against everyone who has conditions that affect mainly women. That is why men get caught up in it too.
There isn't enough research into autoimmune conditions, because there isn't enough research into conditions that mainly affect women, and 78% of people with autoimmune conditions are women.
I am sorry that you are in the same boat as all the women. My son has this problem too.
If only we were not so blooming tired. If only we were more articulate. If only we did not have to gird our loins for an upcoming appointment. If only we could sleep before and after such (useless) appointments. If only we did not look so normal (although if medics fail to observe ‘unseen’ disability, who can?). If only we did not care for anyone but ourselves. If only they lived a day in our shoes.
Granted they (might) be extremely busy but surely, treating the large number of us correctly would cut down on their workload.
Maybe a sabbatical might help if it’s ‘compassion/battle fatigue’. However maybe the ‘powers that be’ would be (quite rightly) concerned that practitioners would choose not to return to the workplace.
Maybe some might return on the basis that (presumably) rediscovering why they wanted into medicine in the first place! OR maybe I am still showing off how thoroughly naive I am.
Still they are extremely well paid, they could personally be able to afford to go on a sabbatical and it would keep them in work longer as they would not be forced to take their pensions early having too much in their pot. Unlike those of us who have had to give up work prematurely through illness and lose both wages and pensions.
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