Thyroid UK
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Epidemic of useless endos and GP's

I am becoming very alarmed by the large numbers of posts we have seen over the last couple of months indicating an epidemic of useless endos and GP's. Patients having levo reduced drastically, endos and GP's not taking any notice of shocking bloods results. What can we do about this? It is really getting serious, too many posters having their health compromised.

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I've wondered about it too.

I think there are various problems. This isn't a complete list, but these are some issues I think are relevant.

1) Doctors think thyroid patients exaggerate how bad they feel. They are mostly women after all, and all doctors (male and female) assume that women have a low pain threshold and are determined attention-seekers.

2) Doctors think being hypothyroid is a minor problem.

3) If they take people off Levo and T3, then when the TSH rises they can tell patients they no longer need T3. Also when the TSH rises they can give only enough to lower TSH to just below 10 or around the top of the reference range. Even better still for the budget is if the TSH never goes above 10 they can tell the patient they never needed thyroid meds, and they can cancel the patient's free prescriptions.

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HB,

If there's enough belief in the symptoms reported to order blood tests it makes no sense to ignore the results which confirm the reason for the symptoms.

I haven't heard that anyone's med ex card has been withdrawn and they have to pay prescriptions. Most of them appear to be going back to their GPs and endos for Levothyroxine to be reinstated.

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Clutter

I've mentioned before on the forum that I had my prescription exemption certificate withdrawn by an official at the NHS Business Services Authority, on the grounds that I was receiving part of my treatment in the private sector. It took several years to get it reinstated.

When the certificate came up for renewal last year, I found the system had changed, and I needed to have the GP practice sign my application form to confirm my condition. They prevaricated, simply because they no longer treat my hypothyroidism, and regardless of the fact that I was driven into the private sector because the same group of doctors would not provide the correct treatment.

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Hillwoman,

In that case you are the first person I've heard of that has had a med ex revoked.

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Wow! I'm incredulous! Again! What a liberty! I didn't even know it could be withdrawn! Omg! The torture never stops! #*#*!

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It would definitely help, I think, if everyone receiving such bad treatment, writes to the practice manager/head of endocrinology to complain.

I saw a tragic case earlier, where someone - no idea of her name because she'd left by the time I read her post - was advised to write a letter of complaint and said she couldn't, she didn't know how. I think that must have been around dinner time, because no-one offered any help, and she left the group. I think she was very upset, and, as she was new, didn't understand how this group works. I think that to avoid further occurrences of that sort, it would be a good idea if someone with their wits around them - this poor girl was obviously hugely brain-fogged due to the bad treatment of her thyroid - could write a model letter that people in difficulty could copy. It can be very daunting to write a letter of complaint when you're not feeling well. If you could just copy something, changing the details where necessary, it would be a great boon to many people. The model letter could be posted, and then kept in the pinned-posts.

Any volunteers?

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b12deficiency.info/b12-writ...

I heartily endorse your mention of a template for a letter for members to send to their GP's or Endos. The above link to the B12 Deficiency website takes you to - Writing to your GP - :-) I have posted this before - but it seems more urgent than ever that something similar is done for Thyroid patients. Yesterday was an avalanche of horrendous decisions by GP's and Endos - leaving people so unwell - it is a HUGE scandal. It begs the question that with the increasing amounts of withdrawal of T4 we are reading about, that Endos are not even aware of the difference between T4 and T3 ... :-(

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There is information here about the official NHS complaints processes:

Wales

citizensadvice.org.uk/wales...

England

citizensadvice.org.uk/healt...

Scotland

citizensadvice.org.uk/scotl...

Northern Ireland

citizensadvice.org.uk/nirel...

At the bottom left hand of the English page, there is a "Tips" section which provides guidance on structuring your complaints, and further links to template letters and a list of organisations that can help you make a complaint. The flowchart on this link is only applicable to the English process, but most of the tips are equally useful wherever you are.

Generally the processes begin with a complaint to the local practice, healthcare trust etc. If this doesn't work, the advantage of the official process is that ithere are set timescales for the various stages. Also, if you need to escalate matters (eg by contacting your MP), you will be able to say that you have tried following 'official channels' without success.

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But don't you think that's all the little complicated for a hypo whose been so badly treated they're practically brain-dead? We need something simpler to follow that applies directly to our situation, not a one-complaint-fits-all solution.

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The problem is, to escalate the problem effectively, you often need to have followed the process (which mostly begin with a letter). In particular, to access Ombudsman services, you typically need to demonstrate that you have exhausted the official channels .

If others are in a position to help draft letters etc , that’s fine - but they may benefit from the guidance provided .

If no-one is able to help, these links point to organisations which would be able to draft letters, make phone calls, complete forms etc.

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Yes, I understand that. But, I'm only talking about that first letter, as a step on the way to getting better treatment, not going the full Ally McBeal. That can come later, when the person is more able to think clearly.

Your links are very important, of course, and I think this whole thread should be on pinned-posts to give people help as and when they need it. But, we do need something more specific for that first letter, that directly applies to hypothyroid treatment, giving facts and figures and an idea of where the doctor went wrong, and which would probably be impossible to draught for someone struggling on 25 mcg - or no levo at all - with a TSH through the roof. That's when they really need help with something that's easy to understand and adapt to their needs. :)

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I agree Greygoose (and hyper people, typically on a short fuse ,with shaking hands and ‘thyroid fog’ would struggle just as much, although I accept there are currently specific issues with regard to treatment of hypothyroidism).

From the hypo perspective, are there a few standard letters that would meet most cases, with a bit of tailoring, or would they need to be drafted from scratch every time ? I’ve never really understood the relationship between ThyroidUK and this forum, but is this something they could help with?

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This forum belongs to Thyroid UK. :)

I think the post by cwill, below, demonstrates the sort of thing I'm aiming at. Patients could select the points they want to mention from her list - and it's a list that almost exclusively refers specifically to hypo patients.

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Really need to read all the posts in a thread before responding:)

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Valarian having used the Ombudsman service I can say that without a shadow of a doubt they are a bunch of shysters whose remit is to defend the NHS at all costs.

Don't waste your energy, they think it's OK for multiple GPs to misdiagnose leaving you housebound, sleeping 18 hours a day, barely able to manage personal care let alone prepare a meal etc etc.

Some links:

phsothetruestory.com/about/

twitter.com/phsothefacts?re...

phsothefacts.com/

Scum of the earth.

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Sounds like you must have had a bad experience from beginning to end, Cinnamon_girl, however, a quick survey suggests that it is generally worthwhile going ahead with a complaint. I’ve only used statistics that were readily available online, but assuming more recent figures are broadly similar:

This report shows that in 2014-15, 37% of complaints to the Parliamentary Ombudsman about NHS England were upheld or partially upheld.

cached.offlinehbpl.hbpl.co....

For complaints which did not reach the Ombudsman:

-In England during Q1 16/17, 36.6% of written complaints were upheld, and a further 27.7% partially upheld.

-Welsh figures for Q4 16/17 were similar, with 34.2% of complaints upheld, and 29.6% partially upheld.

While this is pretty damning to the NHS with regard to the percentage of valid complaints, it does suggest there is better than 50% chance overall of having a complaint upheld at least in part.

For the record, I have nothing to do with the NHS (other than as a patient), or either Ombudsman.

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Crimple,

There seem to be some spectacularly ignorant and badly trained consultant endos and GPs re interpreting blood tests and dosing. It looks like some practices don't have protocols in place re signing off blood test results to patients & advising patients to make an appointment to discuss abnormal results.

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Clutter

I love the phrase you used, 'spectacularly ignorant'. I will be using that for sure!

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Clutter

I just get this amazing visual of ignorance so intense that it lights up the night sky like fireworks. I just fired my GP for that very reason :)

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Would Lyn Mynott be prepared to get involved, do you think? It is fairly obvious that most of these woeful actions have been the result of ignorance, although I would not rule out arrogance and indolence being part of the problem in some cases.

My GP practice uses a stream of trainee doctors, fresh from medical school. They are usually keen to help but know very little about thyroid. A while ago, I had to teach one the difference between T3 and T4. He was querying why I was annoyed that the lab had not tested my free T3, as "T4 is the active hormone and T3 is inactive". Naturally I put him right on that one but what else is he thinking, which to quote you, is "spectacularly ignorant"?

Lyn is well respected in thyroid circles. Any ideas?

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Yes I think we need to contact Lyn. I would be willing to but a bit on my plate at moment! Next week would be better.

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Itt (improve thyroid treatment) page on fb has such files/letters etc.

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I think we need letters or statements to cover:

Not taking my signs and symptoms seriously such that I have been diagnosed and medicated for x y z despite my bloods showing thyroid struggle

Starting me on a dose suitable for someone that is frail and has cardiac issues when I am neither of those things thus delaying a therapeutic dose considerably

Failing to order the appropriate tests

Failing to read the test results you do order with reference to the research literature and guidelines

Failure to know how to safely increase or decrease thyroid medication and the preferred time spans

Trying to dediagnose me

Failing to refer me to a Thyroid specialist, rather allowing me to be treated by a diabetes specialist

Showing so little knowledge of thyroid issues that I, the patient, seriously ill and with brain fog, appear to have a better grasp of the relevant facts than you do leading me to question whether you should be responsible for diagnosing me and controlling my drugs.

Failing to offer suffienct information that is accurate and up to date such that I can no longer consent to be treated by you.

That’s a start and boy did it feel good. If we put together standard referenced statements then we can simply put in the relevant facts and dates, using the statements to argue the main issues of the complaints. Then advise that they are sent to GP, practice manager, Healthwatch, PALS, hospital CEO etc.

My GP finally diagnosed me but as I have ‘CFSME’ and had HVs refused they would not give me the drugs until I made an apt with a certain doctor and went to the surgery. Phone calls were also not allowed. At that point I couldn’t move, stand, walk or think. I was crawling to the loo and not eating unless anyone brought it to me. Inhuman and so very wrong.

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We should definitely get some on the thyroid uk page. There has been much talk of the thyroid groups working together recently. Need to put it into practice. And Diogenes rallying cry the other week about time to act! The itt fb page is about action. This page helps sufferers.

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These observations and comments are timely - I was wondering about what to do about my experience during last week's New Patient appointment. To make the most of a 20 minute appointment, I made typed notes (1+half A4 pages) to give to my allocated doctor. On entering the surgery, the first thing he noted and commented on as I sat down, was that I wasn't wearing dirty trainers. In his view, healthy patients wore dirty shoes because they took exercise. The analogy I get. What he didn't get was that I was wearing a new pair of boots for the first time, bought in the January sales to cheer me up after a rotten Christmas, to coax me outside - Hypo symptoms being aggravated by by stress of moving house. Once I was sitting down, the doctor refused to take my notes but made me read them out loud to him, after which he told me, 'the problem is, you're fixated with Thyroid. It's not your Thyroid. It's something else'. He wouldn't confirm what the 'something else' was, but confirmed the only reason he was following up my request for an Endocrinologist appointment was to prove to me I did not have a Thyroid issue. He then wrote me a Sertraline, antidepressant prescription, which I refused, confirming this was the second time in six months I had refused a Sertraline prescription and it was on record I do not want to take antidepressants. Sertraline is generally not recommended to patients taking Levothyroxine, which includes me. 2017 blood test results and prescribing outcome are on my records, I can't understand how a GP could ignore my record of diagnosis in March 2017, when my TSH was 5.5 and I required a loading of B12 injections. This new doctor claimed, 'Oh, your B12 was OK', yet when I confirmed my symptoms included arm tingling, dizziness and palpitations, he told me: 'Well, you would have done,wouldn't you.' Prior to moving house, my last TSH record was 1.04 in August 2017. I am having my first blood test tomorrow following a break between GPs. T4, T3, TSH, B12, Folate and Ferritin have been approved - I asked for Vit D, but don't think it's included. Following tomorrow's tests, I revisit the surgery on February 8 to discuss results. In the meantime, I think it would be sensible to arrange a full thyroid profile privately through one of Thyroid UK's recommended labs as a comparison. Last week's appointment was a shock and upsetting setback. The following day I decided it would be best to change this allocated doctor and enquired after a lady GP. She had places on her list and fortunately there was a cancellation. I saw this lady doctor on Monday, only to be told her list was full - though she is happy to go through test results with me on 8 February. I've never felt as isolated or frightened for my health since underactive thyroid was first diagnosed last March. 2 junior GPs said they lacked authority to prescribe Levothyroxine - one suggested she doubted I'd get it. I saw three GPs before a Partner prescribed a starting dose, but she was part-time and inevitable gaps between appointments occurred. Meanwhile, I researched and the facts were scary, I continued to feel under medicated and I was having to fight for treatment when I least felt like it. Along the way, I've experienced upsetting GP appointments; bullying surgery receptionists who argued against providing me access to blood test results; pharmacists blaming me for incurring additional costs to them by my requesting specific generic brands. On one occasion a pharmacist could only produce 2 single 100mcgm Actavis Levothyroxine tablets to dispense to me, despite having received my prescription on Monday - I was collecting on Saturday. Finally my suggestion of accepting the prescription in 50mcgms rather than 100 mcgms was accepted, but my unnecessary stress was witnessed in public. In my experience, availability and general supply of Levothyroxine appears to becoming a real issue in places like the small Gloucestershire town where I lived last year and Dorset, where I now live. I wonder if anyone else has had the same problem. I have left one national pharmacy as they no longer stock Actavis and joined Boots, where the pharmacists have been really helpful and understanding. Originally, it was bad enough to discover T3 is no longer routinely prescribed at GP level, to then experience resistance and serious setbacks in acquiring Levothyroxine is a serious concern and must be contravening a code of ethics when a drug is essential and for life. At nearly 65, I recognise I'm a patient who comes at a cost. Now I've had time to reflect, I fear I might be facing a new strategy employed by the GP I met last week: 'You're fixated with Thyroid. It's something else.' I dread to think what's on my record. He didn't take my blood pressure. He didn't once ask how I was.

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Hey I'm in Dorset too.

So glad there's finally someone from my neck of woods 😃👍

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PM me, if you like! Good to have support.

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Your GP is a smug idiot -not that you need to be told that !

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Blood tests reported: 'Thyroglobulin autoantibodies Abnormal. 3000iu but expected. No further action.' I have Hashimotos. Endocrinologist appointment next week.

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Do hope you are not disappointed with the Endo as they are often diabetes experts and lack thyroid knowledge. Have you researched him/her ? The NHS rarely know what to do with Hashimotos !

I suggest starting a new post with your result as it will be missed in this thread 😊 Support will then be forthcoming if needed ....

Hppy to help ...

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I generally favour the cock up theory to conspiracy but it is looking like the latter.Instructions from on high ? Are there really that many incompetent endos or are they following orders to cover their backsides?

Will we found out which CCGs told GP practices to buy the cheaper flu vaccine and save £3 each just covering the OZ strain and not the Japanese strain supposedly responsible for half the hospital cases.

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