Sometimes feel it is only me but it can’t surely?

[Miffie]

Good afternoon wise and wonderful people in my iPad. Did any of you have your thyroid function destroyed following radiation therapy in the 1950s for removal of a birth mark or similar. Perhaps you know someone who did? I am assured this cause is not covered in the guidelines for a referral to an endo ( I didn’t think I had to fit “guidelines”). Following serious worsening in symptoms and my health I took matters into my own hands regards treatment and returned to dessicated which was NHS prescribed for me for very many years. I would love to hear more about anyone’s journey.

[m7-cola]

I applaud your decision to take matters into your own hands as regards treatment’. I think it’s the only way to ensure we get our needs met.

[Miffie in reply to m7-cola]

Thank you I knew it was as I unfortunately don’t have Hashi, if I did I would have allowed a referral. Amazing isn’t it?

[shaws Administrator]

I think it was disgraceful that the Association made False Statements about NDT in order to get it withdrawn. Why did they do so? Considering NDT has been given to patients since 1892 (in different forms) and it saved lives. Before that hypo patients had an awful death. They've recently done the same by withdrawing T3 due to cost, instead of finding cheaper replacements.

The Associations have now been successful in withdrawing NDT and T3 leaving many patients very unwell indeed and the only option is synthetic levothyoxine for many who cannot improve on it. There has to be something lacking in these decisions when NDT for years (since 1892) has had a long time to prove its worth by restoring people's health. Big Pharma seemed to want a 'slice of the bread' and introduced levothyroxine. Although it seems to work for many it doesn't work for everyone. Many need a combination of T4/T3 to feel well. I have also read that before introducing levo that doctors were paid to prescribe it and not NDT as was usual at that time. I'd like to know if the Associations or members received payments 'in kind' to withdraw a successful thyroid hormone replacement through misinformation.

One of TUK's Advisers wrote to the following Associations and despite three yearly requests, the Associations never responded. They couldn't argue with scientific arguments so just ignored it and left many patients unwell, who had recovered their health upon NDT. There has to be something missing in their care/consideration of sick patients whose health may well have been restored.

drlowe.com/thyroidscience/C...

[Miffie in reply to shaws]

Yes it is shocking, and I am living proof. I was was well on dessicated for over forty years! Blooming ridiculous how treatment has deteriorated in my lifetime.

[shaws Administrator in reply to Miffie]

It is truly shocking that hormones which returned you to good health has been withdrawn, due to 'False Statements' made by those who are supposed to be 'experts' in hypothyroidism. By keeping people unwell or maybe developing other health issues the cost to the NHS will be higher too and very detrimental to the health/lives of those who're hypo.

[Hidden]

I wrote to the British Thyroid Association containing serious allegations, including proof of their own hypocrisy, concerning the blacklisting of NDT last April and have yet to receive even a simple acknowledgement. It is very sad indeed that they deliberately fail to include their address on their website, but it is very easy to find it on the Charity Commission (no email address given) -

DEPARTMENT OF ENDOCRINOLOGY

KINGS COLLEGE NHS FOUNDATION TRUST

DENMARK HILL

LONDON

I am continuing my complaints through my MP and the Health Ombudsman.

[helvella Administrator Thyroid UK in reply to Hidden]

Sadly, I believe that this sort of action might be the only way of getting results.

[shaws Administrator in reply to Hidden]

Due to the dire straits of many, mainly women, who are put through immense health worries and expect doctors to help/understand it comes as a complete shock when we find out that they know absolutely nothing about how to 'diagnose and treat' people who're hypothyroid. They think it is 'so easy' i.e. just wait till TSH is 10 ignoring clinical symptoms - some of which are very distressing - and their knowledge of symptoms is nil. If hypo prescribe levothyroxine.

Before the introduction of blood tests we were diagnosed upon our clinical symptoms alone (nowadays no doctors are aware of any but will prescribe for the 'symptom' when it should be thyroid hormones or increasing dose).

Not one medical professional diagnosed me. I was given 'this and that opinion' and I also had an op under anaesthetic to remove a 'web in throat'. I had none but surgeon was too embarrassed to tell me that he and his colleagues were wrong. No money was refunded - they kept it and it was about a year later I diagnosed myself when TSH was 100. Three days previously GP phoned to reassure me that the 23 blood tests he took - all were perfect. Not when I look back at TSH result which was 97+.

I wonder how many people actually die.

You could also write to the House of Lords and enclose a copy of the following that Dr Lowe (then an Adviser to TUK wrote). Dr Lowe requested over the next three years for a response which was ignored altogether and Dr L died through an accident). Although this concerns T3 - NDT has been a lifesaver since 1892 (in various forms) and it saved lives and still can do if it was reinstated.

Surely it is the patient who should have a say in what makes them feel better. This is from TUK:-

"Thyroid UK, along with other thyroid groups including the British Thyroid Association, has worked on a dossier that was requested by the Lord O’Shaughnessy, the Parliamentary Under-Secretary of State for Health and Social Care.

He wanted to see clear evidence that NHS England Guidance was not being followed by CCGs in respect of the prescribing of liothyronine and this is what we were able to give him.

thyroiduk.org.uk/tuk/campai...

Patients shouldn't be forced to source their own 'lifegiving' hormones.

[Miffie in reply to Hidden]

It is sad we have to resort to this type of action. Can I ask is your hypothyroidism also caused by the 1950s fashion for NHS radiation treatment for birth marks?

[silverfox7]

I started my thyroid journey back in the 1980's with NDT prescribed by the NHS. Was on it around 5 years and onlyvdtopped as could no longer get my medication due to. Strike in Canada. My GP, in the same boat, sat it out but with 3 young children I asked to try Levo and to be fair wasgoid on it for many years. But that was t successful post menopause so decided to go back to NDT and again no issues. I don't have antibodies so may be easier for me but hate having to deal with Endo'S who haven't a clue! Comment on Endo'S letter to GP -we must work on getting the TSH much higher! Never going to happen!!!

[Miffie in reply to silverfox7]

Yes NDT is great and NHS standards changed sadly. May I ask are you now underactive due to radiation treatment as a baby ? That is what I am keen to find out. Thank you.

[silverfox7]

Not it just came out of the blue!