Thyroid UK


So my daughter eventually sees an endocrinologist in newscastle after being given high dose thyroxine, collapsing in Carlisle hospital, then sectioned. After utter persistence on my part my daughter is released after drs deliberately withheld Thyroxine in the mental health unit despite proof of her congenital hypothyroidism. She was also illegally held when she became an informal patient. On release the gp flatly refused a tsh test. She went back and insisted to a different gp. Her tsh was 87.02 with myxodema. She had a test prior to section showing raised adrenaline. A Gastro dr explained this to her that if someone said 'boo' it would be raised!!!!. This was the same dr who told her "looking at you your thyroid looks about right " - then tsh of 87.02!

She sees the endo who orders endocrine tumour tests (5-h1aa and gut profile for endocrine tumour) she goes today, sees a registrar not the endo,.who answers every question with "I don't know " and tells her she won't see the endo again and refers her back to Carlisle.

Is it normal for an endo to order tests, see the patient on that one occasion then discharge her from his care courtesy of a registrar before she has the results?

8 Replies

Formal complaint. Contact your MP and your local newspaper, if not the Daily Mail. That is totally and utterly appalling, if not criminal.


I totally agree with rosetrees' comment. I would suggest you find out when your MP holds one of his/her "surgeries" when constituents can make appointments to see him/her face-to-face. Discuss your case and that of your daughter, and hand over your letter rather than post it.

Your MP is more likely to remember your case if you see him/her personally.


When I rang the police re my daughter being illegally held they refused to come. They told me I was trying to circumnavigate the nhs complaint procedure!! (whilst my daughters health was being damaged by refusal of thyroxine)

The complaints procedure is farcical and aimed at getting all the info you know about what they've done. My daughter wrote a ten page complaint re her appalling treatment and refusal to give her the endocrine tumour results over a year ago at another hospital. They will not answer even one of her questions. The ombudsman is meant to act on her behalf due to their refusal. The ombudsman keep telling her to request the hospital answer her questions which they won't so why won't the ombudsman act for her instead of getting her to keep asking the hospital the same thing?

No dr wants to give her the results of the endocrine tumour results.


What a worrying and anxious time for all of the family, particularly for you and daughter. Thank goodness you are able to fight in her corner. Its awful when others take over and they don't know the person at all, never seen or treated her.

I hope everything turns out well. To withdraw her levo, you should take that up further with whoever is in charge of the hospital. It's more than a disgrace.


I think you need a lawyer.

1 like

A lawyer that specialises in NHS negligence. Not all lawyers have the same expertise.


What a shocking story. I hope you get somewhere with a complaint.


Thank-you for your replies. It will be taken further especially after a male nurse who was not involved in this situation rang my workplace and made lots of untrue statements to try and cause trouble for me. He did this the same day and after I'd emailed the health authority and said I'd found out some very disturbing info re my daughters care.


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