An update

Hi, thought I would update on my daughters situation. After being admitted to hospital for severe stomach pain again she was given daily blood clot prevention injections which relieved the pain which was denied by a Dr (this happened at previous hospital). No other reason given for injection as she is not in the at risk group. The hospital stopped her thyroxine

As soon as she went into hospital (225mg) and would not let her see endo (again!) After a week it was restarted which resulted in chest pain ,collapse and mental decline .Sectioned and refused thyroxine stating her thyroid was now normal .After four months gp said he would not do blood tests until November and she didn't need to see endo now .Eyes puffy , stomach pain etc .Insisted on blood test recently which showed tsh 87.02. Gp wanted starting dose thyroxine at 225 mg which he then changed to 150mg after daughter commented about her heart pain and no thyroxine for months! After taking 150mg she felt jittery, couldn't sit and felt detached and strange mentally. She took no thyroxine for two days and felt as she did before. Gp states it will takea month to get her medical records and then he can refer to endo which no doubt will take a few more months .In hospital my daughter heard nurses talking where they said "she'll never see an endo ..She'll just keep getting bounced"

17 Replies

  • Hello roubyroo,

    I am sorry to hear that your daughter is still so unwell.

    I understand she has received appalling treatment in the past and it is terrible that this seems to continue. All her symptoms could be attributed to an unmanaged hormone imbalance. The link below explains the connection between an unmanaged thyroid condition and possible mental health.

    These are issues that have been previously asked but I can't see answers from your posts.

    Has your daughter been tested for thyroid antibodies TPOAb and TGAb?

    Also the importance of nutrition is sometimes overlooked and is vital for any given thyroid meds to work in the body. Has she had levels checked for VItB12, Vit D, folate and ferritin,

    If you can post any results complete with ranges (numbers in brackets) members will comment.

    Ask your GP why it will take a month to get your daughters medical records and insist on a referral now as there is a waiting list for most endocrine clinics.


  • I suggest you inform your MP, PALS and the practice manager and Primary care trust of how your daughter is being treated. I agree with flower 🌸 on all counts, but it is time to stamp your feet. What they are putting your daughter through is inhumane. I would even say that this is a case for a human rights lawyer.

    If you can afford it at all, go private, get bloods done privately and get a recommended doctor to treat her. Email Louise Warvill here for a list. You may have to travel but it would be worth it.

  • Hi

    So sorry this is happening to you both is your daughter still on a section ? most medical records are on a electronic system called swift for Mental Health so GP should have no problems excessing them .

    You may wish to contact MIND information on line of local groups .Its a mental Health Charity they are very helpful as it sounds as if your daughter has been treated appallingly .

    Best of luck


  • Hi, I cannot even begin to explain the power drs have when they all block care. I have had several drs smile then say "it's all very confusing isn't it " whilst blocking her seeing an endo. At the mental health assessment before she was sectioned I said my daughter had a serious complaint in against st Thomas London for wilful neglect and this was affecting her care, . the psychiatrist replied with. "and will that complaint go ahead ". As my daughter has now pointed out I had informed this dr already that the complaint had been made so it did not make sense for her to say this and at the time I felt it was a veiled threat. A social worker then said "you're not going to take her anywhere else for tests are you "

    The ambulance crew who came the morning her mental health deteriorated gave her a sealed carton of orange juice to drink in the ambulance. Why would they do this if they didn't know what was wrong with her.. She could have had an infection or any number of reasons and I know that food and drink shouldnt be given in case an operation is needed. After they'd taken her I went in the downstairs toilet and it reeked of acetone so much I had to come out. Months before She'd previously had abnormal sugar levels which again, were ignored. It's never ending and on Monday the gp told my daughter that the mental health unit she was in stopped her thyroxine because they thought she was over medicated. They told me her thyroid was normal and she was mentally ill which is what the hospital she has a complaint against tried to do.

  • It is appalling treatment. To stop levo because her bloods are 'in range' is wrong. To deny her replacement is awful. The unnecessay suffering and worried family and I would also say you should complain. There are many people sectioned due to not having thyroid hormones replaced and also some don't get better or improve until their Free T3 is checked also and given some T3. T3 is the active hormone required in every cell in our body and the brain contains the most. TSH alone is incompetent.

  • Her blood level tsh is at 87.02 which is clearly hypothyroid and her gp wrote myxodema, she feels very ill and having difficulty breathing now but, according to gp it will take quite some time to get her records etc. I have no doubt that they are deliberately causing harm to her. I cannot put all information in here as her situation has been going on for two years now but drs plead ignorance of endocrine issues to avoid action then refuse endo appt.

    Her collapse in hospital with chest pain etc was written up as a fall. My daughter heard the nurses talking just down the corridor when this happened

    "ring yer bell " whilst laughing

    "has she gone yet "

    "nearly "

    A crash cart arrived and was sent away

  • Where is your daughter now?

    How old is your daughter?

    Is she at home or still under a section?

    If not has she a cpn?

    As you are fully aware once you have a mental health diagnosis it can be very difficult to get anyone to treat you as if you are not 'mad' on every front.

    If she is at home not under section order still I would def borrow, beg money etc and get her to a good private endo from Louise's list, you are in London aren't you? Stop expecting the NHS to treat her fairly. Get an independent endo to sort out what is going on and stabilise her meds whether that be NDT or t4 t3 that is needed or other things outside of NHS standard treatment. Then when/ if she is well return to NHS with this evidence.

    In the meantime contact MIND and get her a good mental health advocate who can fight her corner and will take her experiences as real, when it comes to the mental health system.

    That is the best course of action for her under the complicated circumstances.

    Also get her to request in writing her thyroid blood results, take the print outs to new endo.

  • I was also going to say check up on adrenals. Unless she is all the way to Addisons, that won't be treated (or even believed in)under NHS.

    It sounds like you guys are really hopeful of seeing an endo, but I've been under one since the start, and she is just as bad as any GP. She's primarily a surgeon.

  • Yep could well be but without an endo appointment no ones going to know.

  • dthe this aughters previous hospital ct scan showed 9.6 cm mass which was written up later as small cyclical ovarian cyst, 4cm mass in neck, raised adrenaline recently, ulcer, oesophagitis, sclerosis and scarring in stomach . She was vomiting and passing blood last year which was written up as asthma which was obviously the ulcer. Dr at first hospital said she had something on her adrenal gland, the ' ovarian cyst ' was not an ovarian cyst and she needed to see someone about her stomach. They ruled out addisons last year but her adrenaline /noradrenaline bloods and 5h1aa urine test results went 'missing'. Because she has been lied to and help withheld it is impossible to believe any dr especially when their is non action.

    The gp also put munchauesens by proxy on my youngsters daughters medical records to stop any help being given to her such as after the car accident we were in.with this on her records it immediately gives drs the ' right ' to Ignore anything I say. She is the gp who lied about my 14 yr old daughters blood and urine results so Rheumatologists would ignore her symptoms. (I got a copy of results eventually) no one will help or listen and have caused massive harm to both my daughters through their actions. My youngest daughter trusts no one now. Recently she had an operation which drs tried not to do and kept trying to send her home. After surgery I was told her bowel was laying on her appendix by the surgeon. A nurse had already shown me paperwork that said her appendix was wrapped around the bowel causing compression. I had to argue with drs all week for them to do something!

  • I'm in shock that they could do this . I don't understand the medical symptom in the UK but can you go to your GP or even contact an endocrinologistile I think Dr Derry and ask him to help . I'm so sorry I'm in shock that they could do this

  • At a meeting we requested at the hospital with the clinical director and two drs due to their actions and lack of help recently we explained what had happened at the previous hospital with wilful neglect etc. I also said "do you think the general public are aware how much drs lie etc. I didn't understand at the time why he smiled at me but I do now. They're protected and protect each other. My daughter said for a long time that they were strategic in their actions.. Such as placing a munchauesens dx without my knowledge to stop help being given to my daughter . I would never have believed two years ago that drs wouldn't care if you lived or died through their neglect but if you cause ' trouble ' for them your health care is null and void and they seem to find it quite amusing what they can do to you. When my daughter was in the mental health clinic her rights were utterly abused. Her sim card and battery were taken out of a new mob phone I bought her so she couldn't ring me. When I said to her She had rights, she replied on the phone "it dosent seem to matter if I have rights or not mum " the nurse was listening and told her later that she'd no longer let her ring me. The nurse wouldn't let her ring me when her sister had come out of surgery despite my daughter being very worried for her sister. When I called the police because they were holding her illegally (at this point made an informal patient and legally able to leave) I was banned from the ward and my daughter told "how do you feel now that you can't have visitors because of your mum calling the police.

    Like I say, it's endless how they've abused their power.

  • You could ask your MP to investigate this or rather let the right people know to sort it out.Also sometimes if you say you are going to the media to let people know what is going on they will step up. I had a lot of trouble when my thyroid went over active and the GP wouldn't listen to me or my family saying I was having anxiety attacks. In the end I paid for a private diagnosis £150 at Spire. The Doctor there immediately said I was over medicated and wrote to my GP telling him what to do.I can tell you it was money well spent.

  • did you look up your daughters health insurance benefits? nowadays, you dont always need a referral, we wont know these things unless we do our own research, a lot of health insurances are now available to us online, or by calling the phone number on the back of our insurance cards, most likely she will need a referral, but you never know, just a thought

  • I have just read your post, I can not believe what disgusting ,appalling treatment you and your daughters have had. Threaten them with the Media, might make some one listen. I hope you find someone to help you soon, good luck!

  • Thank-you for all your replies. After the last year of constant stress I have to say it's taken its toll on me especially as my youngest daughter was also ill twice during that time and needed an operation. I have constant pain due to lack of help after the car accident last year which is wearing. I am now writing to my MP and I will be forwarding information to a national newspaper which I had wanted to do before but was unable because of all their was to deal with with both my daughters and working also.

    Thank-you for your support

  • I just want to add my sympathies. Society has become so depraved but I didn't think they all wanted to become doctors and nurses. I wish I had advice or power to help you; all I can say is that one day justice will reign and so will good health.

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