NICE Response to my complaint!: Thank you for... - Thyroid UK

Thyroid UK

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NICE Response to my complaint!

Thank you for your email.

I understand this is very important for you so I will try to provide you with useful information. However, the role that we have in providing guidance for the NHS on the treatment of health conditions doesn’t extend to investigating or commenting on the care provided for individual patients. If you have concerns about the care that has been provided by the NHS we always recommend that you try to resolve your concerns informally by speaking with a member of the healthcare team, if you are unable to reach a resolution you have the option of making a complaint. NICE does not have a role in this process but there is more information on the NHS Choices website.

NICE produces a range of guidance and information products, including clinical guidelines, which are recommendations on how healthcare and other professionals should care for people with specific conditions. Our guideline topics are referred to us by NHS England. I can confirm that although we have not yet developed a guideline yet we have been referred the topic of thyroid disease and so work has started on the development of this which is anticipated to publish in November 2019. Further information on the development of this guideline can be accessed from the previous link to the development page.

You may wish to refer to the clinical knowledge summary on hypothyroidism. For your background, clinical knowledge summaries (CKS) may be accessed via the NICE Evidence Services website, they are designed to summarise the evidence on the treatment of specific health conditions; however they do not constitute formal NICE guidance. We commission an external organisation to develop these resources and make them available as a source of information for health professionals, typically those in primary care, while they may refer to NICE guidance (if there is any that is relevant), they also use many other evidence sources.

Please contact us again if would like any further information on NICE or NICE guidance.

Kind regards,

Helen Crosbie

Communications Executive (Corporate Communications)

National Institute for Health and Care Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom

Tel: 0300 323 0141

Web: nice.org.uk

------------------- Original Message -------------------

Received: 15/02/2018 19:05

To: NICE Mail

Subject: NHS complaint

Dear Sir or Madam

Firstly, to explain a little of my medical history.

I have suffered health problems for over 25+ years. My GP has been treating each symptom separately and unsuccessfully as they each emerged over this time, costing the NHSa small fortune, with little or no relief! I searched for a diagnosis and my symptoms matched 3 or 4 possible diseases, one of which was hypothyroidism which was a perfect match. My GP had said it could be lupus, then fibromyalgia or CFS, and consequently treated me for fibromyalgia with no success to date. I however have researched hypothyroidism in depth and I felt that this was what was happening to me. In 2007 my GP agreed to refer me privately to a thyroid specialist (now deceased) whom I had researched, she never offered to refer me to an NHS endocrinologist. I paid him £200. He instructed my GP to prescribe levothyroxine after looking at all my results, saying I was definitely hypothyroid. After my next tests six weeks later, my dose was increased slightly as instructed by him. After a few weeks I felt palpitations, which I had already had prior to medication anyway, but had felt fine, so I then finally decided to mention it to the GP on my next visit. She said my dose needed to be decreased as there was a risk of heart failure. Shocked, I did as she said and stayed on the lowest possible dose (25mcg, which is not even a starting dose) for some time with no improvement to my health, then my dose was reduced again to half a tablet (12.5mcg), then eventually I was told to stop. I did not return to the private Dr as I trusted my GP. Over several months my health gradually became worse and last year deteriorated to the point where I was admitted to A and E four times, with no solution. One symptom was severe palpitations and chest pain (not on thyroid medication). I have researched more and discover that there are thousands of people in the country, mainly women suffering the same fate and getting nowhere with the NHS, becoming sicker, as the guidelines and ranges are totally outdated and wrong!!!

Last September my GP referred me to Rheumatology as I was still in pain and I persuaded them to also refer me to nhs endocrinology and hoped that this would conclude my health issues. I saw a Registrar who did the tests and arranged a follow up appointment for Thursday 1/2/2018, however it was the consultant who I saw at the treatment centre via NHS. I found him to be very unhelpful and frankly very rude, arrogant, sarcastic, and self opinionated, and someone who is very comfortable and overconfident behind a closed door with his patients. He had clearly already decided from reading previous results that there was nothing wrong with me before I went in!! He didn’t listen, he wouldn’t consider the list of obvious symptoms, positive test results or my long history of ill health and said I needed no treatment. He concluded by telling me to go on holiday and implied that I worried too much about my health, saying I had something called Hypochondriasis, which I realised meant hypochondriac!!! My holiday was cancelled last August as I was so ill and I told him this.

He disregarded the obvious tell tale thyroid results, saying that they were all normal despite all the evidence of this not being true. He threatened to discontinue my recently re-instated medication, if my results of tests taken on the day come back 'normal' again (just within range does not mean optimal). I have only just managed to persuade my GP to resume 25 mcg thyroxine, albeit the lowest possible dose, which is not even a starting dose and she will not increase unless he says so, which he won't, quite the contrary. However recently My GP has agreed reluctantly to increse dose to 50mcg.

I needed to get on the road to optimal health, now particularly, as the rheumatologist spotted a calcified neurogenic fibroma of the spine on my scans, a nodule on my lung, scolisis of the spine and a bulging disc. Rheumatologist referred me on fast track to a thoracic surgeon. My appointment was on Wednesday 7th February and I now face major surgery. She also referred me to the spinal unit, my appointment was the day after, Thursday 8th February. My husband has recently been diagnosed with prostate cancer too. I have been so worried since receiving her report the day before Christmas Eve. I need to be healthy to cope with all that is to come. I have been denied of this.

I am disgusted that so many of us are being treated like this and I want to know why NHS and NICE guidelines are so out dated and prevent people, debilitated by this awful disease, from reaching optimal health (I have been ill for half of my life!), a disease which actually can lead to heart attack and/or strokes, rather than the drugs themselves causing this as we are all being told. These guidelines mean that no medical professional within the NHS can treat people like me. We are all desperate to enjoy what’s left of our lives after years of disabling illness which is down to NHS negligence!! I was 60 last year and have no income and no pension until I am 66/7, however the endocrinology consultant told me to go private although he said he wouldn't treat me in his private practice if I saw him there, and he told me to book a nice holiday as I have mentioned!

There would be an uproar if other auto immune sufferers were treated like this, such as diabetics!!

My recent results:

TSH 3.8 (0.3-5.5) (TSH was 3.4 recently at GP, range changed to 0.5-4.4), These are too high

T4 10.7 (10.0-19.8), This is rock bottom, needs to be towards the top of the range

T3 4.7 (3.5-6.7) This needs to be above 5 and is the most important hormone, all cells depend on this!!

TPO antibodies in September with GP 1300 (0.0-60) This is ridiculously off the scale!!!!!!

True diagnosis should be: Autoimmune thyroiditis, possibly with hypothyroidism, and should be treated accordingly.

Vitamin etc results:

Vitamin D 50 (24-167) This is too low, needs to be at least 100 especially on thyroxine

B12 704 (190-800)

Folate 8.6 (3.0-17.0) This is a little low

Ferritin 75 (12.0-300) Sept was 117 (12.0-300) at GP This is a little low