My wee girl update

Hi all so saw endo on Monday not much further on,she said her tsh 4.30 & t4 12.1 bloods that were taken a month ago were normal so I argued my case (even though I'm not that clued up) and said I'd read that with the antibodies in her blood a very small dose of levo could reduce her symptoms and the damage to her thyroid,and my gp agreed with that and that her bloods being within range meant nothing to me as I am watching my daughter fade in front of me,so she said ok you've talked me into something I will give u a prescription of Levi 25mg per day,but I'll take more blood today and phone you tomorrow with results.She then said the exhaustion she is suffering seems a bit extreme and maybe it's something else,I knew she meant depression/ anxiety,as it was in the notes ,so explained I'd already been down that road and that cahms had discharged her as they thought the main problem was thyroid,asked about adrenal fatigue,dismissed it,anyways phoned me yesterday and said not to give her meds as her blood came back tsh 2.30 & t4 13,mentioned again about her mental health and maybe I should go back to cahms ,but said she'll retest in a month and Will test adrenal function.I am so confused I know my girl has a degree of anxiety that started when thyroid problem started,but there is something not right,told last time she definitely has an autoimmune disease,flipping between over/under expected to flip within months to underactive,then she gives me meds based on antibodies 998 and last months bloods,then backtracks ,I am being pushed from pillar to post so fed up.seeing gp tomorrow for a rant.sorry that was very long post xx

17 Replies

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  • that endo is killing your daughter

    neither her TSH or her free t4 is normal and i bet her free t3 is low too

    her tsh should be 1.0 or below and free t4 andcfree t3 in balance in upper quadrant

    of their ranges

    you need to get ferritin ,folate,b12,vit d3 tested as these may be low and not helping situation

  • Thanks for your reply I asked her about these tests and she said give her a multi vit !!i will ask gp in the morning and about referral to a private endo ,think I can afford initial consultation I'm just worried about ongoing costs,she has also lost weight 2.3kg in 5 weeks due to no appetite and a 'fullness' feeling she gets after eating only a little food though I still don't think she should have lost so much x

  • Only because my daughter had the same stomach/eating problems etc - has coeliac disease been considered? This would explain many of your problems? Good luck though x

  • i just saw your other post and saw her age - that's also exactly what happened to me and I had all the exact same symptoms and that's when my thyroid went too. Turned out to be coeliac but it never got picked up as test negativ eon blood tests - it's definately worth a try

  • I think you meant it metaphorically reallyfedup, but your initial sentence doesn't reassure. There are less dramatic ways to begin your helpful advice.

  • Sorry but a multi vit will not sort out the dramatic vit deficiences we see day after day on these forums in hypothyroid patients

    i totally agree coeliac should be checked for

    as for the endo my comment is correct theres too many endos causing untiold misery and damage to hypothyroid patients

    theres 5 hypos in my close family and each one has needed a real battle with GPs and endos

  • The recent issue of Harmony , the Thyroid UK magazine, has an article by Cindy Kennedy who is a Nutritional Medicine Practitioner and has children with Hashimoto's. She's written a book called 'Help! My Child has Hashimoto's' and has a website at

    nutritionnavigator.biz/

    Hope that's useful for you.

  • Thank you I'll look at that now x

  • Definitely ask for her to be tested for celiac asap. Then after the test put her on a gluten free diet, and investigate other food sensitivities which can cause fatigue and depression:

    thyroidpharmacist.com/artic...

    Here's some info about an anti-inflammatory diet which can help identify sensitivities:

    thepaleomom.com/start-here/...

  • Thanks everyone she was tested for celiac about a month ago as far as they say it was negative but I'm on my way to gp just now to ask for more tests,she wasn't eating much gluten for the weeks before it was done so I don't know if that makes a difference xx

  • Yes, you have to be eating gluten before the test for it to show positive. Ask GP for Cortisol, iron, ferritin, vitamin D, folate and B12 as well as these all need to be mid range or higher. Ask GP for a print out of results and post them. Good luck.

  • She may have celiac or non-celiac gluten sensitivity. Once she has done any testing, worth going 100% gluten free to see if it helps. Wean off gradually over a couple of weeks so it isn't a shock to her system.

  • I would second this, if all test complete and you don't get positive - really still worth trying 100% gluten free diet as my tests were negative and they have now finally diagnosed me. :o)

  • In my own case, high anxiety was a symptom of very low thyroid. My TSH was 70 and my medical notes from 1982 say This woman has anxiety only, no need for blood tests. Hugs x

  • Just home from gp she has referred her to a gastro paediatric doc,but agreed with me about adrenal because of all her symptoms and questioned why they are waiting another month and didn't test her on Monday she doesn't think vit bloods will tell me much as most teenagers are deficient and thinks due to stomach problems she may have an absorption problem,she also said she backed me 100% to go for second opinion ,I'm now going to see if I can find a private paediatric endo for a consultation if anyone can help and knows good private endo in Glasgow or even out with please let me know xx

  • When i read your post it reminded me so much of my daughter. She was 14 when she was on the verge of collapse. Could get out of bed, seemed depressed, couldnt cope with the world started self harming, refferred to CAMHS who were worse then useless, blamed me for her problems. I believed part of her problem was her thyroid but like your daughter her results were ' normal' or 'bordeline' i got her treatment on the basis of her antibodies result. Once on treatment she began to get well. I had to fight to get her treated as i dont have a good relationship with our GP due to my own and my husbands treatment of hypo. My advice is to go private rather then fight the NHS as this puts you more in control. I hope your daughter gets well soon.

  • Thank you that was what I tried with endo on Monday to get her to treat her based on antibodies and she agreed,then took it back next day based on bloods i have a good relationship with my gp and she says I should go private for second opinion,past few days I have been looking at this hpv damage to girls her age as she became unwell a few weeks after getting jab,I have to consider everything as she is going downhill so quickly but I think like you said if they treated her on antibodies we can see if it helps and at least I would have a better idea,I just wish I knew of a decent private endo here in Glasgow thanks again xx

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