I was asked to respond to a query from the Labour Party about my experiences with the NHS, and in particular whether I or anyone I know had had to resort to private care. I replied suggesting they don't need to dig far into thyroid care to find many, many patients in the UK who not only have to find and source their own medication and devise their own treatment plans, many also have to pay for their own blood tests etc. I said I believed there was a significant number of patients living with sub-optimal health, sometimes out of work because of it. I cited this website and Thyroid UK as being a source of further information. I'm wondering whether this is an opportunity? Perhaps we should all be writing to Wes Streeting, giving concrete examples of how we are let down so very often.
Healthcare under a Labour Government? - Thyroid UK
Healthcare under a Labour Government?
Pink_Bear, well said. Are you expecting a reply.
It was a fairly general survey, so no, I don't expect a personal reply. I just hope somebody somewhere takes notice.
I also did this survey. Good answers Pink_Bear . Much more comprehensive than I gave.
I took part in this recent NHS study
healthunlocked.com/thyroidu...
James was doing numerous small online discussion groups
Our group, at the end of the 2 hour discussion we asked him, what he would take away from all the discussions he had done with different groups so far
he was astonished at how many patients test privately and self manage their condition and how many self source or have been forced to get liothyronine or NDT on private prescription
The study is to look into offering home testing kits via NHS to everyone on levothyroxine ……but would only be TSH ….nothing else
Obviously we all said that just testing TSH would be completely useless
James sounds like an interesting ally for the future. So nice to hear someone is looking at research in this area.
Did you point them at the currently running Government Petition?
Give more funding for thyroid research and patients after price hike
A fine of £84 million has been levied for the price hike in liothyronine (T3), which had a significant impact on patients. We request that an amount equivalent to a proportion of the fine (1-5%) is made available for thyroid research and support for patients with hypothyroidism.
petition.parliament.uk/peti...
I didn't specifically, but it's a good point to make if members decide to lobby Wes Streeting more generally. I'll certainly mention it when I write to him.
Thanks for letting us know. Treatment for hypothyroidism is generally poor on the NHS.... Fullstop. I recently hit a shocking brick wall that evrna&, e doctors are only allowed to test TSH. So if your have hyper incidence then it's only TSH thry can do. He said it was too expensive to do all three!
The only people who can order a fully thyroid panel at my hodpital are cardiologists. GPs it's just TSH. I managed to get the pblebetomist to add Ft3 & Ft4 on mine..... Will see if they do do it.
The situation has got a lot worse. .
It's 13 years since I was diagnosed and my experience with testing was the same then as what you're experiencing now. Two years of very poor health, and it couldn't be thyroid I was told because my TSH was in range. I just about give up hope that things will get better, but no, we must keep trying.
Yes I know GPs have struggled to get more than TSH done for years.... but consultants were able to order what they want. Looks like that's now changing. Am really not sure why they are so TSH obsessed... It's not that reliable. Mines stuck and never changes no matter what.
It seems to be a postcode lottery. My GP gets my FT4 and FT3 tested every time.
Mine was like that but theyve changed their online form so the Ft4 & Ft3 can't be included!!
Really!? Blimey. I get my blood draw forms from the private endo I see. I then book the test with the GP and the nurse uses the form I present to her. Perhaps I'm not seeing the real picture for the surgery.
I think it depends where you live. But given that the thyroid tests were done for my Endo so he could advise next steps in the Amiodarone disaster it's pretty poor. Luckily I managed to convince the phlebotomist to change it to include ft4 & Ft3. Why the GP couldn't have done so is plain daft. Everything is electronic including blood tests
I only ever deal with the nurse who draws the blood for me and she's never had an issue. She takes the manual form from the endo and inputs it into the computer. I wonder sometimes how much lack of computer skills might compound some difficulties we have.
At the start of my permanent AF I saw a locum (elderly) who spent the time hunting the surgery for some paper, finally taking it out of the printer so that he could hand write a letter on it to A&E where he was sending me (unnecessarily I know now).
Technogy had clearly moved ahead of the locum. No technology wasn't the problem. He said its online & only gave him options to tick boxes of which blood tests. For thyroid it's TSH.... Nothing else. Another doctor told me they are not allowed to request anymore than TSH now..... For me that's barking as my TSH gives the same suppressed reading no matter what dose I take!! I pointed that out but it made no difference. Lol...
It's all mad. And makes me angry. Our care is non-existent. In fact our "care" is punishing. Like they want us to suffer as much as possible.
I have to say I agree re care. Mines been appalling and all but non existant since my heart op. Had to chase everything up requiring me to try to gen up on things I shouldn't have to, causing worry and anxiety. Am waiting for a call from the Practise manage...... Not forth coming so far either....
It is not acceptable. You needed a kind over-seer after a heat op. Not just left too it. I don't have a cardiologist checking on me anymore. He dismissed me from clinic during the pandemic. I used to have 6 monthly checks to make sure everything was still acceptable with the AF. Nothing.
Little wonder I'm trying to treat my own neuropathy with B13 injections. But I should go and see someone about my issues with neuropathy in case it's something else. I just don't want to go. I feel like I'm a nuisance and should just carry on.
B13?Yes I'm avoiding them like the plague. However I put in a request for a meeting with my GP Surgery manager. Response time is within 48hrs am told....6 days later I rang to remind... and am told it's on her to do list today..... To which I said I'm unavailable from 3.30 as have an appointment. Such a thing as to whether I was available never even crossed their minds, let alone ask if it's convenient. So it goes on. There's a saying that goes something like "stop trying to walk through a door that doesn't exist."
Seems to me that patients exist to serve GP Surgeries... Not the other way round.
B12. Slip of the finger. I've been typing furiously all morning. First day back out in the big and annoying world after my hols.
I'd be tempted to ask how the 48 hours and 6 days fit together.
48hrs/6days are logged on my list of questions. I wait with interest for a phone call to arrange a meeting....who knows when that will be!! 🙄
Anyone writing to any MP or minister…..suggest you include this Thyroid and employment survey by Aberdeen university
abdn.ac.uk/news/documents/T...
And shorter summary
And point out that there’s at least 2 million people in U.K. on replacement hormones - at least 90% are female
ncbi.nlm.nih.gov/pmc/articl...
From the above data, one can estimate that slightly over 3% of the population of England were prescribed regular levothyroxine during 2007[2]. This is corroborated by a prevalence rate for hypothyroidism of 3.01% in Tayside, Scotland during 2001
I had the same questionnaire. As I had previously written to Wes Streeting about a very dangerous medical incident (now part of CQC review) and he didn’t bother to acknowledge receipt, I saw the exercise as nothing more than a shallow, vote-chasing election campaign activity to spout empty promises about reducing waiting times for operations.
So - to me - pointless.
I wrote to all senior cross party leaders about the incident and only one person replied.
I don’t think public trust in govt/nhs/police etc can sink much further, and many people’s expectations are low. I recently went to my local hustings to select a candidate for the forthcoming election and it was a dispiriting affair.
Apathy reigns.
Thyroid treatment may one day be seen as an historic scandal, but is not foreseeable.
We have also been let down by earlier Labour governments, it’s not just Conservative , so I would be surprised if they would help.
I really wasn't trying to be political here, just suggesting there may be an opportunity to make a point if an incoming government are receptive.
It's worth a try. And I remember the last Labour government. NHS and general health care was much better under them than it has been for the past 16 years.
Definitely.
How are you doing now MissGrace ? We share Dr M. You were trying to finish the coastal walk. Did you manage it?
Still one section to go. Still seeing Dr M. How are you? x
I'm worse than I was when we first started talking about Dr M. I've definitely gone past his comfort zone. I still see him, but not more than twice a year as I can't afford it and I now struggle with the drive because I can fall asleep when driving. It's momentary but awful so I don't like going far. I tend to take some T3 before a longer drive now.
Next visit is April. I want to try to get a successful saliva cortisol test ready for then. I have exhausted every other avenue, but not saliva cortisol. Last time I tried the test was void as it took so long to generate a tiny bit of saliva. I'm on NDT now but Dr M won't work with that. I tried hard with Levo and T3 but could not find a happy medium.
I’m so sorry that things haven’t worked better for you. He has done so much for me. I hope you can find health and peace. Thyroid patients are treated so badly. x 🤸🏿♀️🥛
I still look forward to going to see him though. 
I love him. 😂
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