I am a part of the Facebook Group "FTPO - UK/EUROPE (For Thyroid Patients Only)" Hope it is okay to add this)
There are a lot of people wring to the TV show Panorama to try to get them to investigate the shocking way Thyroid patients are treated by G.P's and Endocrinologists.
Everyone is sending an email with their story to Panorama (not sure if I can put the email address on here - admin can you advise?)
It is hoped that if they get flooded with emails from all of us they will have no choice but to investigate.
I also have an acquaintance who is a journalist for some famous women's magazines who is also interested in our plight
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JellyJac
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If it would be of any help, I'd be willing to put a word in for the latest findings and impact on thyroid function, diagnosis and treatment (not the Establishment's I may add). That is, the variability of people's response to T4 monotherapy, its unsuitability for a significant proportion of patients, the need to measure FT3 as control for diagnosis and treatment, and the use of T3 (in whatever form) as a supplement in suitable cases. Might be useful to put in something the bigwigs find repellent and "controversial" and "insufficiently proven" (i.e. they can't find out anything wrong with the opposing arguments, so use those terms to avoid thinking about it).
"the bigwigs find repellent and "controversial" and "insufficiently proven" (i.e. they can't find out anything wrong with the opposing arguments, so use those terms to avoid thinking about it"
That's an exceptionally astute analysis of my doc's reaction to virtually every idea I bring him. Obviously it's a common disease in Western medicine....
Jacquikent, no problem with Panorama's email addy. If your journalist friend is writing an article she might want to contact Lyn Mynott CEO of Thyroid UK via lyn.mynott@thyroiduk.org
Good luck with that, I applaud you. A few years back I had a Channel 4 producer, think it was Dispatches interested, but as I was newly diagnosed I felt I wasn't the person to take it forward. Unfortunately my request for help fell on deaf ears.
I really hope you are successful, I would be happy to email.
Hi Gyon, yes that is what I did. My story (in brief) below: Apologies it is a long read:
Good Morning,
I am writing to you in the hope you will make a television program investigating the abysmal and shocking treatment of thyroid patients in the UK.
In 1994 I became pregnant with my first child at age 25 had horrendous hyperemesis started getting really ill One of the doctors I saw at the time asked, on examination, whether I had ever had any Thyroid issues. At the time I hadn't, and was unaware at the time that there was a long family history of Hypothyroidism.
In 1997 I became pregnant again and was hospitalised for the first 3 months, again for hyperemesis. I was fed intravenously as I was unable to even keep water down. In 1998 I had a healthy bouncing baby boy. This was when my life changed!
Soon after my son was born I started to suffer with PND, I was reluctant to take anti depressants and was advised by my doctor to take St Johns wort. This helped a little and when my son was 12 months old I went back to work. From that day onward I felt "flat" I felt as if I was "going through the motions". Then, symptoms started getting worse, I ballooned from a size 12 at 5ft 9 to a whopping size 22, with no apparent reason. I started loosing my hair in handfuls, I had debilitating fatigue and was unable to walk more than a few meters without having terrible leg pain and being out of breath. I was beating myself up about this as I had always been a very busy and active person. I got to the end of my tether in early 2002 and I visited my GP. there was a locum doctor on at the time who tested and diagnosed Hypothyroidism. She didn't tell me anything about what it was etc, but just told me I would have to take a tablet for the rest of my life and prescribed Levothyoxine.
Over the next 12 years I became worse and worse. I kept going to the doctors about the weight gain the crippling pain and the horrendous fatigue. I kept getting told "Well none of us are getting any younger (early 40's) - maybe if you lost some weight?" I was told this over and over again and even though I told them I always ate healthily and was too tired to exercise (I could barely put one foot in front of another) they looked at me as though I was old, lying and lazy!
I attended the doctor for numerous reasons: Inability to get pregnant, numerous throat and ear infections, problems with my legs, Hair loss, heavy and painful periods increasing lethargy and many more. Each time I know as soon as I walked in I was labelled "FAT" and as much as said that was the cause of all my problems.
Last year I had the Merina coil fitted for menstrual problems - I now know they are a symptom of Hypothyroidism, as is the menieres disease that I have recently been diagnosed with, but what hurts me the most is that I now know that all my efforts to try to become pregnant again, and the failure to do so is most likely caused by my Hypothyroidism. This kills me!
In September 2014 In desparation, I went on my knees to my G.P in tears asking him to help me get better. He gave me slimming tablets!
In frustration and anger I went home and started studying Hypothyroidism and my life changed! I learned so much and that is when my life changed!
I have had my head in books since Sept 2014 and have learnt may things a few of these things are:
- the ranges in the UK are too high
- the NHS waits to leave you to get worse
- the lab ranges are inconsistent between different areas
- the TSH isn’t the only thing that should be measured; the thyroid needs to be able to convert properly and you need to look at T4 and T3 and, the labs decide whether you require this.
- If you don’t hit a TSH score of 10, even if an Endocrinologist asks for tests, they are likely to be denied by the lab. The “normal range” for TSH is statistically flawed as a measure, as the sample failed to eliminate patients with diagnosed hypothyroidism.
-TSH is the only measure that the medical professionals I have met are interested in. It is a useless marker for patient and yet it is the holy grail to the medical professionals.
- there is a negative feedback loop involved with the endocrine system so if you start taking thyroid hormones your thyroid try's to adjust and reduce its own thyroid hormone production.
-Thyroid hormones should be increased every few weeks to find your physiological dose to combat the negative feedback loop.
-all endocrinologists will have learnt about the negative feedback loop in their medical training.
- the Thyroid effects every cell in your body and effects your ability to absorb vitamins.
My Levothyroxine (T4) had never been increased and I had never been offered Liothyronine (T3) or Natural Dessicated Thyroid.
I went back to mt G.P and requested an alternative treatment to Levothyroxine as I felt it was making me worse. He said he did not know anything about NDT or T3 and would refer me to an endocrinologist.
I saw the Endo on 22nd January 2015, she asked me lots of questions she came to the conclusion by "looking at my face" that I was depressed! - Just like that, no mental evaluation nothing! She criticised every supplement I was taking. It is a well known fact, that patients with thyroid issues are low in nutrients. She told me she would see me gain in 10 weeks. I felt exhausted, drained, I was happy, not depressed in the slightest. I was flabbergasted. I went home and cried. My husband was livid. He said he was sick of me being labelled fat and lazy and now depressed!
(I have not heard from her since...)
We decided then and there that the only option was to self medicate. I now take NDT/T3 combination with supplements, and measure my vitals, whilst slowly increasing.
I am back to my old self, I have lost 4 stone, I go to the gym regularly, my myxoedema is subsiding, I have the energy for day to day living and my husband says he has his "soul mate" back. I don’t need Goddess Thyroxine!
What bodies need is the right fuel and all the nutrients to sort out thyroid, this means a medicine that is both T3 and T4. Natural Dessicated Thyroid. GP’s are scared to prescribe as they have to account for it to Clinical Commissioning Groups, Endo’s are often scared to prescribe it as GMC may reprimand them and patients....BUT WE GET BETTER ON IT. Surely this will save the NHS valuable funds in the longrun? I myself would not have needed treatment for infertility, menieres disease and many more trips to G.P's and specialists.
I am angry with myself that I didn't do all this research years ago. I have missed so much of my children's lives growing up, and most of all I missed the opportunity to have more children!
Something is so clearly wrong with the world, when our national treasure of NHS wants to keep its’ patients sick. I feel natural desiccated thyroid hormone/ liothyronine should be available on the NHS as a majority patients report feeling better on this than T4 only treatment. In addition T3 treatment costs the NHS over £100 a month due to being locked into having only one supplier who dictates the cost. In other countries this costs around €3 a month! The NHS should be free to source the most financially viable source of treatment from a number of suppliers.
This is just a small part of my whole story and I know of many, many others whose stories are much worse.
Please help.........I am deeply disappointed by the so called caring profession, they abandoned and worse still mocked me. I write this on behalf of all those patients who are really sick and slowly wilting away.....
Yes well done for highlighting it on here :). I suggested it on thyroid problems fb after and got the ball rolling with an email to Panorama. Great news you have a journalist interested. Really need to get the powers that be to:
1. change the laws on prescribing levo only and reintroduce t3 and natural thyroid.
2. Stop just relying on blood test ranges and look at patients symptoms and treat everything.
3. Ensure that GPs test all vits,hormones and thyroid functions at least once a year after stabilising condition
4. Get GPs sent on up-to-date compulsary training courses, as they seem to know next to nothing on this subject!
For everyone's information the lady who kick started the idea of writing to Panorama is a member of the group Thyroid Problems UK - Patient to Patient Advice & Support. She wrote to them and then posted her email in the group and a load of us followed suit and it's filtered over to FTPO and hopefully other groups too.
I've popped my email off and had an automated reply, so fingers crossed Panorama will take us seriously and investigate
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Dr's, Endo's who are willing to prescribe NDT?
If you like my hypothyroid presentation, please help me to share it with the press ...
letter for family and friends
BTF Research Award 2018 to Prof Colin Dayan for: Morbidity And Mortality In Liothyronine Treated Patients: LT3 Outcome Study
