Celebrities on the NHS Frontline - BBC1 - Thyroid UK

Thyroid UK
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Celebrities on the NHS Frontline - BBC1

marigold22
marigold22

I have just watched some of this programme, which includes Dr Michael Mosley and Ann Widdecombe. I'm seething - the NHS is so two faced and hypocritical.

Quote from consultant - "it's cheaper to carry out expensive procedures (eg £50k heart operation on an 88 year old lady) than to not do it".

Why are endocrinologists who apparently go through years of training at great expense, failing to make us better to live a decent quality of life?

When our thyroid illness is not diagnosed and medicated correctly, that is costing the NHS and the government a lot of money.

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marigold22
marigold22
in reply to Hidden

I'm mega mega confused here. Is it the NHS which is responsible for leaving us to rot or is it the government or the pharma giants? Is it sheer ignorance or is it an organised plan? Notonly are we living horrible painful lives but one way or the other, we will cost both the NHS & the government a lot.

What is beyond my brain, is the reason it's happening - still. Back in 1981 when I was first diagnosed it was dire, but zero has changed in those 37 years from the heart rending personal stories on here. Which are still being posted every single day.

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ThyroidThora
ThyroidThora
in reply to Hidden

Please don't have a dig at diabetics. I was diagnosed as T2 diabetic 10 years ago and treated like shit because I refused tablets. My grounds for not taking the tablets was that I did not believe that I was T2 because T1 runs in my family and I thought I had thyroid cancer. I had a lump in my neck which, my GP refused to examine. I was told by my GP that I could not have support with my T2 because I refused the tablets. I tried to control my diabetes with diet and exercise and I still couldn't get my blood sugars into the normal range. I finally decided to take the tablets 4 years later and when I was having pains in my left side I was allowed x-rays. I'd had the pains since having pleurasy 3 years earlier and was continually fobbed off with all the drs in my GP surgery saying it was muscular skeletal pain. A newly qualified GP listened to me and sent me for a CT scan. And guess what... the scan found thyroid cancer!!! The surgeon that removed my cancer said that I'd had the cancer for 4 or more years and it should have been picked up when my diabetes was diagnosed. Women with T1 diabetes are at an increased risk of developing thyroid cancer. Plus, my endocrinologist that treated me after the cancer was removed said I'd probably had secondary hypothyroidism. When I checked with my GP surgery they'd never done full blood screening, they only did blood sugar tests (HbA1c), if they had the cancer and hypothyroidism would have been detected earlier and my life chances would have been better. Because of their ineptitude I am at risk of developing Anaplastic cancer in my 60's (I'm soon to be 55) and this kills in months because no amount of chemotherapy kills it.

Plus, I am battling to get the thyroid medication I need. I have taken the max dose of Levothyroxine. I've been on combination therapy of Levothyroxine (T4) and Liiothyronine (T3) and then when these didn't work put on a trial of Armour (NDT). I felt better on Armour (not 100%) but a big improvement on the synthetic stuff and then Armour was taken off me 2 years on cost. I am on a downward spiral of ill health now. My endo told my GP to prescribe T3 only (2 tablets per day) and I felt like shit! So, I bought my own NDT from the USA. A cheap brand that I could just afford on my state benefits I now get because I cannot work. The company that makes the cheap NDT stopped production last October and I haven't had any since. My GP (a different one at the practice) was sympathetic and started to prescribe the T3 again. I've had my 3 monthly check up at the cancer hospital 3 weeks ago to be told by my endocrinologist that I cannot have T3 due to cost and he got the oncologist to back him up. My endo did say that the Armour was to treat my cancer and it should be prescribed by the cancer hospital but they've refused on cost. The consultation was terrible with me pleading again and getting nowhere and finally agreeing to buying ERFA thyroid on private prescription for 30 days. They have arrived in the post yesterday but I'm loath the have them because they are not in the original packaging and do not have a patient information leaflet with batch numbers, expiry date and ingredients. I've asked the pharmacist to provide this before I try them. It has cost me nearly £31.00 to buy these tablets for one month supply and I only get Employment Support Allowance and no other benefits. The stuff I got from America cost less than this for 100 days supply. I am struggling on the T3 I now take but it seems this will be taken off me and I will be on T4. I may as well kill myself and have done with it because my life was unbearable on T4. I could not walk, talk, stand up without getting dizzy and falling over, couldn't sleep, my hair fell out, my tongue swelled up, my skin was so dry and flaky that when I got undressed there was a cloud of dead skin cells in the air. My cognitive ability declined, my memory didn't work, I was constipated and I didn't have any energy...I was completely exhausted and fatigued and I didn't have chemotherapy!!!

Not only is this a burden but the diabetes tablets never worked and I struggled to get my blood sugars under control. My GP surgery refuse to believe that I'm probably T1 and won't do the genetic tests. They wanted me to try 2 different tablets on top of the Metformin and I refused because one of them causes pancreatic cancer and the other causes gall bladder cancer. I've had a gall stone since my daughter was 2 and she's now 26. In addition to this I was confined in hospital during the first May bank holiday and I've now found out I've got calcified gall stones. It was a calcified nodule on my thyroid that was cancerous so, I now live in fear that I could develop gall bladder cancer.

It's through my own determination that I now get insulin to take at bedtime to try and get my blood sugars down at night but I have hypos on a regular basis. I get Humilin 1, made from recombinant human DNA, but my GP surgery still refuses that I'm probably T1 and need insulin all the time.

So that's my fight with the NHS system and I'm not a diabetic that's getting an easy ride on insulin. T1 diabetics can die within minutes if not treated properly but someone with an underactive thyroid can take years if left untreated. Please do not compare like for like for they are not the same conditions even though it's the endocrine system of thee body that goes wrong. We should respect each others differences, struggles and other problems before calling them. I would not wish my worst enemy to walk in my shoes.

TT

Oh Thora :( this is so heart wrenching to read. I'm so sorry for your situation. Sending you love but wishing it were T3.

Px

Thank you x

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ThyroidThora
ThyroidThora
in reply to Hidden

Hi,

Thank you for your lovely reply.

I did consult a firm of solicitors and was told that I did not have a leg to stand on because I'd given them consent to remove the cancer and that is what they did. The fact they did not tell me of the side effects is irrelevant and judge would look at what they did and what I consented to and deem that they had done their job properly.

I have been told about NDT from Thailand from other people in this forum and a kind member on here sent me some but the packaging was in Thai language and I did not want to risk taking them because I have multiple food allergies and I did not want to risk being ill from them. I passed them on to someone else on the forum I know and that person didn't feel well on them so, I don't want to take the risk. Sorry I cannot follow your recommendation.

I know how your husband feels through when taking the synthetic stuff I feel really down and suicidal but, I have to try my best and get on with life.

Once again many thanks for your kind words.

TT x

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ThyroidThora
ThyroidThora
in reply to Hidden

Possibly, I just didn't want to risk it.

Government basically ignored Mr Michael Mosley's BBC study on saturated fat and cholesterol even though it was a decently designed study and involved more subjects than many other studies - as it didn't show what they wanted it to. But ill health and increasing cost of unemployment and special needs education etc comes out of a different budget, as does social care - so it doesn't matter.

It seems to be a lack of education in medical school and slowly changing the thinking surrounding thyroid issues. It needs to be started somewhere but may take years to filter through to all who need to know.

Karen

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