Lorraine Cleaver's story: This has been posted in... - Thyroid UK

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Lorraine Cleaver's story

shaws profile image
shawsAdministrator
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This has been posted in the past but thought it would be helpful for others who're struggling.

If you reside in Scotland, the government passed a resolution that hypothyroid patients will be given a thyroid hormone replacement that permit their recovery be it: T4, T3, NDT or T4/T3 combination.

Lorraine was also able to see one of the deceased Advisers - Dr Gordon Skinner - who treated people and not the blood test. He was also up against the authorities and he appeared before the GMC several times but was always found to be treating patients properly. He was the 'old school' taught about symptoms etc and there were no blood tests then either.

mirror.co.uk/news/uk-news/m...

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Carna profile image
Carna

This is very interesting because my GP in Scotland informs me that only thyroxine is available on NHS. Any NHS Endocrinologist she could refer me too would not even consider me while I was on NDT and I had to go back onto thyroxine. The NDT I was on had been fine and I was quite well. I had to buy it myself. The formulation changed somehow (I saw others reporting that too) and I crashed soon after I went on it. My T4 and TSH were very very low and I agreed to go back onto thyroxine because I felt so ill and things improved but I am not well. I don't know how to handle this now. Should I get a private blood test done and see a private sympathetic endocrinologist and go back to GP and demand the medication they recommend is supplied on NHS because it seems this resolution in Scotland says I should get what I need. I asked my GP if it was even worth her referring me to a NHS endocrinologist if they didn't think anything other than thyroxine was necessary? She agreed it probably wasn't - and it would take a long time to get an appointment anyway. I feel I have wasted enough of my life with brain fog and being unable to do simple sums at times or remember the easiest things. Leaving a hoover in the middle of a room for days because I meant to go in and clean it. I used to be so sharp, run my own business and now feel I can barely get through the day. I am so glad I found this site because it is so lonely fighting for better care and a normal life.

shaws profile image
shawsAdministrator in reply toCarna

Well, Carna, I think you are going to be a very lucky girl. I posted last week that the Scottish Parliament has agreed that whatever thyroid hormones we need to be well again will be prescribed. I shall find the link shortly.

shaws profile image
shawsAdministrator in reply toCarna

This is a link and - first of all I'd make an appointment with your local MP. I'd also contact Elaine Smith as it is time the word was passed to the medical profession that some of us do not recover on levothyroxine or levo alone without adding some T3.

healthunlocked.com/thyroidu....

Carna profile image
Carna in reply toshaws

Thank you. Maybe my MSP would be better if it is a Scottish Government directive?

shaws profile image
shawsAdministrator in reply toCarna

Words - slowly, slowly find their way to the forefront so we've got to be pro-active and I don't know who tells doctors what to prescribe. The MSP is the first call I should think and you could refer him to Elaine Smith if he has any queries. It was Lorraine Cleaver who started the 'other than levo' prescribing for those who don't recover on levo and told that is all that is available.

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