My underactive thyroid was slowly killing me – the aftermath

First of all, thank you all so much for your comments and feedback. When the Guardian article went live on Monday I was absolutely besieged with emails, tweets and private messages. What is clear to me is that I am not alone. I thought that I was but I’m not.

Initially, I tried to respond to everyone who has written to me but I quickly discovered that this is simply impossible. If I did not respond personally to you rest assured that I read what you sent to me and I appreciate your time, comments and concerns.

Not only do a lot of people share my experience with thyroid misdiagnosis and neglect of the condition but it is clear that this  situation is happening today, at this very moment. Too many people are, for want of a better way of putting it, slowly dying.

I didn’t expect this to happen but I intend to capitalise on the moment. On Tuesday the Daily Mail contacted me and asked me to write a similar piece for them. Whatever your thoughts on the Mail the fact is that it is a far bigger platform than the Guardian and I expect to receive even more feedback than this week.

It’s clear that doctors in this country are selling thyroid sufferers short. My own experiences with the NHS and expensive private specialists only bear that out. Something needs to change and the sheer volume of feedback that has come to me this week demonstrates the extent of this problem.

Over the next few days I’m going to be thinking about what to do next, and what to write in the Mail article. Any comments would be gratefully appreciated.

Thank you.

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13 thoughts on “My underactive thyroid was slowly killing me – the aftermath

  1. I spend a great deal of time on the Health Unlocked forum – helping newbies when diagnosed with Hashimotos. It is very clear to me that people with lingering symptoms may well have the auto-immune version of thyroid illness but find it almost impossible to have anti-bodies tested if the TSH is in range. This does not make sense. It is down to costs – as I have my tests done privately here in Crete and the Anti-TPO test added on increases the bill. So please mention something in your article that Hashimotos is the most common of thyroid illnesses in the world – but that there is a reluctance to test for it in the UK. No problem here btw. and so people continue to suffer.

    I am sure you will mention the HUGE sums of money that will be saved if thyroid illness was firstly dignosed correctly and then treated adequately and correctly. Less IBS Diabetes Heart problems Cholesterol Sleep problems Weight issues Dermatology Investigations Gut investigations Fibromyalgia/CFS/ME Hearing/Tinnitus – OMG the list is endless. Over 300 conditions can be associated with a poorly performing thyroid.

    Doctors must think outside the BOX and listen to their patients. Why are there Diabetic Clinics and leaflets in Doctors surgeries but nothing for Thyroid Sufferers. Also there needs to be Clinics just for Auto-immune illness – where people can learn that food is their medicine ( Hippocrates ! ) and that most illness starts with the gut….

    Doctors training should include vitamins and minerals and their role in Hormone Health – B12 Folates Ferritin Iron and the VERY important VitD. Hope you have had yours tested and that you are aiming to get it up to 70/80.

    Greece is bust but you can walk in off the street and have any blood test you want and have the results beautifully printed within two days….maybe that would work in the UK rather than the very patronising comments that patients do not understand – we will send them to your GP – and they are lost ! Here we keep all our medical records, scans etc. and we can do with them what we will.

    It would seem that whilst people are on T4 only and do not improve then BIG Pharma makes endless dosh from all the other conditions that abound. GP’s too !

    The whole thing to my mind is caused by ARROGANCE – know you cannot print that – but pompous people can never admit they may have been wrong and step back. something needs to change and change FAST>

    My daughter tested here in Crete – complete with a scan – was told she needed immediate attention with an Endocrinologist. Her UK GP refused to look at her scan and results and did his own blood test – TWICE – and on both occasions declared my daughter NORMAL. We persuaded her to go privately for a FNA – she still had to get past her GP ! Sadly she had cancer and her thyroid was removed. RAI followed and things have become worse. In my opinion she has been undertreated and has been on beta blockers/gastric bypass for weight/anti-deptressants…and so on. She is now battling cancer in her leg and has had two operation to remove two chondroid tumours. Not connected they tell her. Well my research tells me differently. Sadly she refuses any help from me and is in this bubble of denial. It breaks my heart.

    If I could see the swelling in her throat why couldn’t the GP ?

    I could write a book and I apologise for the length of my ramble…..

    Wishing you a successful article with the Mail – and yes I read it on Tuesdays which is Health day !! Gives me reason to have a rant at the nonsense they sometimes write !! So it will be good to read your story again….thank you for taking this issue further.

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  2. Time for thyroid tests to be done at 7 14 21 28 years of age and so on – that way the doctors will have something to use as a baseline for comparisons when the symptoms kick in ! The heel prick when a baby is born is for Thyroid – so THEY DO KNOW HOW BLOODY IMPORTANT IT IS !!

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  3. Well done Ian – I am sure you have now found a new path with your writing and will receive much support here. One thing I thought of that you could also include is the various brands of thyroxine. The ones that 100s of 1000s of people are prescribed are the cheapest and are full of dreadful fillers which then have their own side effects. I did find on line quite a while ago a complete list of brands and exactly what is in each – quite mind blowing really! I personally am intolerant to many of these fillers but have stuck with the same brand now for 20 years and refuse to change even though what I take is more expensive on the NHS – this brand is void of the baddies! I have had to fight hard to get it! Many people on the bog standard thyroxine don’t realise that it is the fillers which are causing problems with tiredness and lethargy and depression also stomach issues. Everyone is different and if still unwell after starting the drug they should change to another brand and keep changing until they find one that suits their metabolism. Doctors and pharmacists in the main are unsympathetic to this but you or someone on your behalf must persevere. Hope this gives you an idea to include in your article. Angela x

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  4. I’m extremely impressed wih your writibg skills and also with
    thhe layout on your weblog. Is this a paid theme or ddid you
    customize it yourself? Anyway keep up the excellent quality writing, it is rare to see a grdeat blog like this one
    nowadays.

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  5. I just found this article. I just wanted to say thank you for writing it. I’m currently going through this issue with my doctors. Literally took my biological clock to skip for any doctor to realize I have an issue, then to check my thyroid. I just feel like I have been running into walls with my doctors. I am very thankful for your article, it gives me hope that one day, fainting won’t be a norm and I can have a normal life, eat normally, have energy and smile. Thank you. Hopefully I make enough noise and get treatment. Thank you for giving me hope.

    P.S. Its more than just on country selling thyroid sufferers short.

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