Help with my daughter

Hello I am hoping that someone can help me. My daughter is 4 years old and was diagnosed hypothyroid when she was 2 years and 2 months. We were living in france at the time. her symptoms were frightening she couldn't walk couldn't talk was constantly asleep seemed to hate the world around her. She was put on ndt (erfa) and although she still has many problems due to the non diagnosis of her thyroid from birth her quality of life did start to get better.

We returned to the uk where she has various diagnosises hypothyroid and autoimmune thyroiditis autism hypermobility sleep disorder. Things have ticked along she has an endocrinologist who is pretty useless I have always felt she needed more medication but apparently her tsh tells him otherwise. She is freezing cold and I do mean freezing all the time. She is severely delayed so can't really tell me about how uncomfortable she is.

Three weeks ago she managed to get hold of my thyroid pills erfa 60mgs and there were 250 tablets missing.i took her to hospital where they did nothing for her kept her in a and e for 5 hours before admitting her onto the ward. Where they took a further 8 hours to get blood results back. Her levels were off the scale. They heart monitored her of a fashion as they couldn't keep the Monitor on and we were sent home 2 days later. Her hair started falling out.

They have taken weekly bloods since to check her levels. Last week her levels of t4 had come down to 89. This week it has dropped dramatically to 12.4 that is less than before she took the tablets. Doctor rang me to say as TSH is still suppressed he will not be restarting her meds and would rather throw her into hypothyroid and then restart. This doctor pays no attention to t3.

Everyone that cares for Isis has reported a marked improvement in her since her levels have been higher. For the first time she has been warm and alert and speaking so much this is a child that is normally virtually non verbal limited understanding. She has been so cold in the past she has three layers including a jacket on for bed and is still cold.

I am at a loss what to do. This endocrinologist has no idea of just how Ill my little girl was when she was hypo and seems completely unwilling to listen to me. Her results yesterday were tsh <0.01 and free t4 12.4 he said her t3 was low but didn't give me figures. He says all he is really concerned about is TSH and until that is in normal range he will do nothing. Given on how much her levels have dropped in a week I am besides myself does anyone have any advice. I'm in Lincoln.

Thank you

Jen Briggs

10 Replies

  • My heart goes out to you, sadly I don't have any knowledge of hypothyroidism in children. In the longer term I would post again asking for members to recommend paediatric endocrinologists by private message and then ask your gp to refer you. You have a legal right to a second opinion and it doesn't have to be in area.

    For now it is difficult to go forward, is your gp sympathetic? Or is he clueless and kowtows to the endo. It is worth voicing your concern to the gp to get your dissatisfaction on record.

    I wish you well and hope someone more knowledgeable will reply to you soon. Good luck.

  • Sadly the GP is as clueless as the endo but I cannot decry him too much as he has continued to provide ndt for both me and my daughter on our return to the uk. I do not mind admitting I am scared out of my wits and I hope anyone can advise me. Recommendations to decent pediatric endocrinologists would be gratefully received. Jen

  • The endo is ignorant and one wonders why in the job.Always get the test results with the ranges ,it is your right.It is very stressful having a sick child .Sorry I cannot offer any more useful advice.

  • I am so sorry what a completely awful situation and your daughter and yourself quite clearly need more medical help! I have 2 autistic boys and my youngest is severely delayed so I understand on that level but to have all these physical worries going on at the same time for her must be immense! I would maybe look at finding a good endo for her. Or travelling to see one. I think even thyroid function tests for kids are limited privately here as I want to get my kids tested, one in particular. Have you looked at the British thyroid association site as they have some info on child thyroid conditions? I would if possible consider maybe doing it privately but also fully understand that not everyone can afford that. Your endo is ignorant and obviously needs to look beyond just her tsh. She is a child for god's sake and needs every ounce of help and energy she can get so everything should be checked, then compared then weighed up. Blue horizon told me that they may be able to do thyroid tests on kids depending on area so may be an idea to do one of these to get a full picture of what is going on. I think you do need to ring them and discuss it with them first though. I hope you get it sorted out x

  • Thank you so much for your reply. I paid privately first of all to get her diagnosis correct when we lived in France and I would go private again I am just not sure what notice the endo would take of a private practitioner. It is an appallingly bad situation to say they will throw a child back inn hypo before he will reinstate her medication 😢

  • It is an it's angered me alone just reading your situation, let alone being in it yourself. It's enough of a fight having a child with special needs let alone having her so physically poorly also. I'm sorry I can't help more but may be worth trying to email for a list of approved endos here. Some of them may be able to see children. I think some of the admins have the email address of a contact to request a list approved endos. I would also suggest searching as much as you can and see if there are any support groups for parents of people with children with thyroid disorders because sometimes they know all the contacts to get these things moving x

  • Jenbriggs can I suggest you contact Great Ormond Street Hospital Endocrinology Department and ask if it is possible for your little girl to be seen by one of their Doctors. My son was under them from 9 months old for growth disorders (see my Profile). Your GP should be able to refer you.

  • I will go anywhere with her but do they just stick to the very ridiculous tsh test or are they open minded and willing to work with children on ndt. If they are then I would willingly travel anywhere with her. I would take her back to the specialist in Belgium but we all know how parents are treated when they leave the country to get treatment for their children. How did you find great Ornerod street my little girl had low growth hormones tested in Belgium but again the endo refused to aknowledge that

  • My son had Hypopituitarism and Septo-Optic Dysplasia from birth (I had/have Graves and was being treated though not on anything during pregnancy). My son is now 40 years old and, from what I have heard, things were much better then, but I still think that as this is a children's hospital things would be better for your daughter. My son had Human Growth Hormone from 2.5 years old until age 7, when growth virtually stopped. Then they were stopped because of the Creudzfeldt Jakob problem. Synthetic Growth Hormone then started at 8 years old and growth resumed. He was at GOSH until he was 19 and then was under the care of University College Hospital London, The Middlesex Hospital, until we moved to a local hospital in Essex a few years later. I am afraid I do not know how they test children nor how they treat them nowadays. You would have to enquire about that. If they can't help, then perhaps they could suggest somewhere you could go for help. They did not treat with NDT when my son was there.

    I wish you and your daughter well.

  • The k you very much I have a horrible feeling that things would have been far better back then than they are now. I wonder if Anyone on the board has recent experience with GOSH I would be grateful if they have. Thank you very much for replying

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