No thyroxine : I wrote a post a little while ago... - Thyroid UK

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No thyroxine


I wrote a post a little while ago and thankyou for the replies I received. My daughter who is 27 and has congenital hypothyroidism has now been sectioned. They have stopped her thyroxine for the last week, would not let her see an endocrinologist at 2 hospitals despite being told she would. Her results for a endocrine tumour were ' lost ' at one hospital, repeated at the recent hospital then not given. She has been put on rispiredone today which can lower thyroid function even more and should not be given to anyone with an adrenal tumour. After taking her blood results there yesterday showing her dosage and what has been happening with her tsh, t3, t4 levels yesterday I was assured she would be given thyroxine today but they won't give it to her. She told me last week she was going to die in hospital and I have no way of helping her now she's been sectioned. She has never had any previous mental health problems until they began giving her pain relief last weekend and she collapsed then her mental health deteriorated rapidly.

We have received appalling care from the nhs since a complaint was made, Inc the care of my 14 yr old daughter after a car accident.

30 Replies

My God, you are in some nightmare and you have my sympathy what with the worry about your daughter not having any medication plus being sectioned.

It is not the first time that people have been diagnosed with a mental health condition, when the actual problem was either undiagnosed hypothyroidism or too low a dose.

There was the case of another Mother's daughter being removed so I am going to search and try and find some details, including the person who assisted in helping.

For them not to give your daughter thyroid hormones is completely inhumane - no other word for it and you are completely helpless.

Our brains need the active hormone T3 and if your daughter's free T3 is too low that may be giving her symptoms if she has been prescribed levothyroxine alone. Some of us cannot convert it sufficiently to T3.



This is the link. I hope someone can find the name of the solicitor who helped this mother and, as far as I understand, the daughter is now back home.

This case was brought by Ken Hind QC who has virtual chambers on the net. It is a landslide case involving thyroid treatment here draconion measures were used to remove the daughter and prosecute the mother for daring to take the girl to Belgium where she got excellent treatment and there is a full report on this on the internet.


This is another link but in the US this time.

Hopefully, someone will be able to get the solicitors name for you.


Found this

Also mentioned in an article in The Independent

Hope that helps :)

Thankyou so much. They've been doing everything possible so I can't speak to a Dr And I haven't, they just keep saying they'll pass the information on. They also transferred her so it took me 6 hrs travelling for an hour visit. When I applied for her to be released they transferred her the next day and keep saying they will give her thyroxine but don't. I've just spoken to her and she said she feels really cold and is having difficulty breathing.

Roubyroo, I'm sorry your daughter is so unwell. Can you chase the endocrinologists at the hospitals for the results of her tests and ask them to contact her mental health physician about reinstating her Levothyroxine? Psychosis can be caused by an adrenal tumour producing excess cortisol. Google adrenal tumour+psychosis.

Contact your MP urgently, he/she may be able to help you.


I'd echo Muffy's advice to contact your MP.


The charity Mind may be able to help, or one of the other organisations they list on their contacts page

I agree with Muffy that your MP may be able to help, but suspect that he/she will be unable to apply the urgency you need.

The lawyers involved with the Mary Kidson case may be worth contacting - see here:


I wondered if any of the UK mental health charities might be able to advise? › Information & support › Legal rights

Mind Infoline 0300 123 3393

Mind Legal line 0300 466 6463 Helpline 0300 304 7000 from 6pm - 11pm Info on having an advocate in South of England


I have read the link that Helvella posted and at the very bottom this is info and Mr Hind was an MP:-

This entry was posted in Uncategorized on November 9, 2014 by Newton Chambers.

Post navigation

← Former MP Ken Hind has sets up virtual barristers chambers on the internet to provide advice and court representation in criminal defence cases

roubyroo in reply to shaws

Thankyou, there is a phone no and I will ring tomorrow For advice. At the mental health meeting to decide if my daughter should be sectioned they brought up my daughters complaint to St Thomas. It felt slightly threatening but I said this would proceed. After the car accident we were in last year they left my 13 yr old daughter in a room on her own for nearly 4 hours before they did a ct scan (I'd been airlifted to a different hospital ) so she was alone and strapped to a spinal board, they wouldn't let her go to the toilet, she was told off because shes scared of needles and she received no help from 2 hospitals at a later date for breathing problems and her lips turning blue (she said she felt her chest had been shattered in the accident) and despite a nurse later saying she needed physio for whiplash she wrote it up as ' stress ' and no treatment.She has constant back pain and numbness and now the same in her hands. She won't go to a Dr now

I can't even begin to describe the numerous things they've done but I'm sure they had a good laugh sending me home on public transport which took 4 hrs with a dislocated fractured shoulder, back factures and a rib I broke the morning they discharged me.

shawsAdministrator in reply to roubyroo

You and your family's treatment has been/is a nightmare. Where has compassion gone? Do they actually know what compassion is for a start? For a frightened child of 14 who'd been in an accident and you would expect some supportive person to look after her particularly if no parents/family members had been able to get there initially. You, yourself were in no state and particularly being in a different hospital and must have been terribly worried for her.

They are very quick to write 'stress' 'anxiety etc which is then on your medical notes and the next person who looks at them automatically assumes that's the case. Your daughter would have been traumatised after such an accident as you would have too, particularly worrying about her and am sorry she is still suffering. Maybe there would be a kind specialist who could take a look at her as she still has her life ahead of her and we should have confidence in hospitals but I must admit, most on here have lost that somewhere along the line.

I wish you success and please write another post informing us of the latest news and updates.

Also, you can write in your profile your history/trials and tribulations so other members can read it.

Best wishes

I did contact mind and because of that I asked both units my daughter was put on if she'd been given the information regarding her rights and she hasn't. They said she wasn't fit to understand it



What an absolutely terrible time for your daughter. Thyroid hormone inbalances can induce pyschosis and only being medicated and rebalancing those hormones will bring some kind of relief.

It is also a terrible time for yourself and I sympathise with you having to see your daughter going through this nightmare. I'm desperately hoping she receives the medication and good care soon and am thinking of you both.

Sending very best wishes and positive thoughts,



Has your older daughter only been on levothyroxine since birth? Can you get a print-out from the GP of her latest blood test results and post them on a new question? We are entitled to them. Why I ask is that she might have been underdosed for along time as some doctors keep our TSH 'in range' instead of low or suppressed and you can slowly deteriorate.

Particularly as she's never had a thyroid gland a dose of T3 to her T4 might have been an improvement. Most times if you've been in a state of health for a long time you take that as being 'normal' as you've known nothing else, when in fact it may be due to undertreatment.

Your younger daughter should also have a full thyroid function test as it runs in the family particularly after her accident as sometimes our thyroid gland gets damaged with whiplash etc. If her thyroid hormones are low it can also cause pains/aches/discomfort as well as being unwell. Also get Vitamin B12, Vit D, iron, ferritin and folate tested. Many of us are deficient and lack of these can cause problems too.

Thankyou for your replys. I have sent an email to ken hind and hope he will contact me today.

There is a meeting at the mental health unit to decide if she will be released as I applied for this last week. I will contact my MP if they do not.

We found out two weeks ago that in 2010 her tsh was 0.22 and t3 9.1. It said on results to contact patient as abnormal which they didn't and she kept being prescribed her 225mg dosage For years.

When the nhs or gps make mistakes they constantly cover up and it gets bigger and bigger until they are causing health problems and illness as they will not address what another Dr has done.

Hidden in reply to roubyroo

Terrible. Bloody doctors will never own their mistakes. They just hope they will go away and never mind the poor patient who has to live with it.


This is appalling and I think that you should speak to a lawyer. Yours and her human rights have been breached.Look on line for virtual chambers whereby you can get direct access to a barrister.

I cannot believe what is happening to our NHS. Now patients have become marketable commodities due to surgeries being run as businesses. God help us all.

Good luck

Hi, I emailed ken hind and rang his wife but no reply from either. Rang a few solicitors but not interested

I have emailed the clinical director of the hospital and he says he can't discuss my daughters health with me. I went to the unit today to see my daughter and still no thyroxine given. Spoke to the nurse and apparently she dosent need thyroxine after 27 yrs and this was decided by a trainee /junior Dr who dosent know her medical history and hasn't consulted an endocrinologist.

I'm blocked at every turn as usual but I will see my MP next.

Thank you for replying to me everyone. It was pretty horrific getting up at 5 am to find that she d tried to cut her throat and wrists. it wasn't a conscious decision as there was something pretty awful going on with her body. I'd measured her heart rate and bp the night before and they were way too high and she kept saying she didn't feel right but her mental state was normal at that tim.

shawsAdministrator in reply to roubyroo

I haven't been able to respond as I am not at home and only have intermittent internet access.

I hope by now that something positive has happened and that you've had some good assistance from someone in authority.

There has been huge neglect and at the end of the line is your daughter's plight.

robyn2014 in reply to shaws

No, no proper assistance from the people lookin after her except to stop medication she does need, thyroxine, to replace it with rispiredone which can further depress thyroid function

Now isn't that strange.. I log into this account with my email and password but my daughters email log in has been used instead of mine

shawsAdministrator in reply to robyn2014

I would report it to HU - it is strange - so if you click Help and cursor down to email and notify them.

I hope there's been some solution by this time, for the good of your daughter.

roubyroo in reply to shaws

Unfortunately, no help whatsoever just being blocked constantly. I have rung the GMC this morning and left a lot of information with them. They are preventing my daughter receiving medication needed since birth and still will not give her the results of tumour marker tests from two hospitals. This hospital has also refused to log a complaint made in March re lack of care of myself and my youngest daughter after a car accident. So many discrepancies it's unbelievable but I will persevere no matter what theOutcome

shawsAdministrator in reply to roubyroo

I am sorry to hear that and it's such a worry for you.

I hope they test her FT3 and reverse T3.

I don't know how they can withdraw her thyroid hormones particularly with a congenital condition. It might just be that she isn't converting levo sufficiently to T3.

Sometimes when adversity strikes it makes us even more determined particularly when our child (no matter what age) is suffering and getting no medication.

Best wishes

Have you asked your daughter's usual GP to intervene? He/she would know that she must be given thyroxine.

When the hospital rang the gp, they denied knowledge of her so they didn't give her thyroxine or asthma medication. I took a letter up to the surgery on Monday about this but no communication from them


I thought this link on today's post will interest you and hope your daughter is coping.

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