Mum of a hypothyroid child

Anybody got experience of hypothyroidism in childhood? Functional Medicine? Natural Dessicated Thyroid?

My 12 year old daughter is hypothyroid, reading these posts and researching the condition I'm very concerned for my daughters future quality of life both mentally and physically. As I cant, as much as I'd love to, take this disease from her then I need to take control and think outside the box to ensure she's got every chance of living a normal healthy life.

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  • I don't have experience of treating a child and those who have will respond.

    It is very difficult for you as you cannot actually 'feel' how her thyroid hormone replacement is working, and many do well on it. On this forum, most are struggling as the others will be getting on with their live.

    I am assuming your daughter has been given levothyroxine? What dose has she been given to start? Do you have a print-out of her blood test results with the ranges that you can post for comments?

    When she has a blood test it should be the very earliest possible, fasting (she can drink water) and allow 24 hour gap between her last dose and the test and take afterwards.

    Levo should be taken on an empty stomach first thing with a glass of water (tablets can stick in throat) and wait about an hour before eating.

    Any other supplements etc should be taken well away from levo and I usually take mine at lunchtime but if she's at school she could take them when she gets home (some have to be taken with food). Ask GP to test B12, Vit D, iron, ferritin and folate too - just in case she's deficient because we have to have optimum of everything.

    Always get a print-out of her results with the ranges. Ranges are important as labs differ and you can post if you have a quey.

    Regards

  • Hi,

    Unfortunately I don't have a copy of the blood results but from memory her TSH was 150 and T4 was 5 and she had a goitre. We have not had bloods taken since May 2016 as she is needle phobic so basically at the moment we are working blind. I am aware that they are wanting to test for antibodies etc, can you advise of what other tests I should be asking for as I want to ensure we get all the information.

    She started on levo 75mcg and before xmas that was upped to 100mcg as clinically she was still presenting as hypo. I am working on the assumption that it auto immune related but don't know for definite and I'm researching changes I can make to her diet to encourage a reduction in the auto immune reaction.

    Thank you for the advice on the time to take the meds as she takes it as soon as she gets up but she will eat within the hour and take a multi vitamin / mineral / probiotic supplement too.

    She still experiences, lethargy, concentration problems, itchy eyes, cold hands and feet and is forever getting a sore throat and raised temp and on rare occasions I suspect she goes slightly hyper as her heart beats faster, she gets very clammy and experiences balance issues (light headedness).

    I'm very new to all this and as you rightly point out I cant feel for her but I'm very aware that she's still not herself and that she feels the pressure of it all as there are days where she cant do what other children her age do and days when she asks 'why me?'

  • It will take some months for her TSH to come down to 1 or lower. We need it around 1 but some doctors think anywhere in range is fine. Not so.

    Her TSH is very high and she will be feeling awful, poor thing, Our heart goes more quickly due also to too low a dose of hormones (which it will be at present until it is gradually increased). I meant you cannot 'feel' her clinical symptoms.

    Our brain and heart needs the most T3 hormones. Also as it deals with our metabolism, sometimes we may be too hot and at other times cold. Levothyroxine is T4 only and should convert to t3. So the dose has to slowly be increased to symptoms are resolved.

    It took me about six years or more to find a hormone which made me feel 'normal health'. So it sometimes isn't a quick fix but seeing your daughter is so young it may be a quick recovery and levothyroxine might be suitable.

  • As food interferes with the uptake of hormones, she can also take her levothyroxine at bedtime (as long as she's last eaten about 2.5 hours before). If this was more convenient she'd miss this dose if a blood test was next a.m. and take dose afterwards and at night as usual.

  • It isn't a good idea to try and treat your daughter's hypothyroidism yourself in the UK since she is a minor. A mother who did this was "grassed up" by a vindictive husband when she wanted a divorce. Doctors decided the mother was poisoning the daughter. The mother ended up in prison for 6 months prior to trial. The daughter ended up being sectioned in a mental institution.

    The mother had actually taken her daughter to a fully qualified and respectable doctor in Belgium who specialised in hormone treatments of all kinds and he was the one who actually prescribed the thyroid meds, they weren't bought from the internet with no medical oversight.

    The case against the mother was thrown out of court with no case to answer. But I think it may have taken a couple of years to get the daughter out of the mental hospital.

    Google for the name "Mary Kidson".

    I would suggest that you stick to keeping your daughter's vitamins and minerals optimal, perhaps look into dietary factors that help e.g. going gluten-free. Don't buy anything from the internet for your daughter which would normally require a prescription in the UK.

  • Thank you for the concern. My daughter is treated conventionally with Levothyroxine by an NHS paediatrician, I am merely exploring the possible options to ensure she is receiving the best and most up to date care.

  • Okay, then I would definitely stick with what I suggested - nutrients and diet. One person who is worth googling is Izabella Wentz. She has Hashimoto's Thyroiditis but has successfully put it into remission. The advice she gives is also relevant for people who have hypothyroidism from unknown causes (I think), not just autoimmune thyroid disease.

    Izabella has a website, a facebook page, and a book which gets good reviews on Amazon.

    For other people who are worth checking out, google Chris Kresser and the thyroid.

  • I have heard of her and I'm currently subscribing to her series The Thyroid Secret which is very enlightening, she is the person who sparked the interest in functional medicine.

    I'm still on the fence about NDT as from what I can gather it no worse or no better than synthetic, but I suppose its like this forum if your OK you don't post and the same goes with the meds some people like it some people don't so you don't get a true picture.

    Not heard of Chris Kresser so will check them out.

  • NDT is the original replacement for hypothyroidism, since 1892, in various forms. It contains all of the hormones a healthy gland would produce and is made from either pigs or cows thyroid gland.

    I will give you a link which goes against the rumours that abound about it which I believe is mainly by the pharma companies who may be more concerned about profits from levo and the blood tests. Before these were introduced people were treated upon their clinical symptoms alone and prescribed a trial of NDT. Many on this forum who haven't returned to good health on levothyroxine (many do it seems) have found NDT beneficial and doctors in the past would have prescribed NDT or T3 have now been instructed not to do so.

    I shall give a link of clinical symptoms and the ones which I think are most distressing, are fertility/menstural problems. miscarriages etc.depression (this may be due to too low T3) (I'm not medically qualified).

    It was written by Dr John Lowe, deceased, who was a scientist/logistician/doctor and he was also an Adviser to TUK. He would only prescribe NDT or T3 (liothyronine) for resistant patients.

    thyroidscience.com/Criticis...

    Also recent researchers in several research companies found that a combination of T3/T4 gives better relief for patients than T4 only. T4 is levothyroxine and is inactive and its job is to convert to T3 (Active hormone) which is required to drive our whole metabolism.

    hypothyroidmom.com/thyroid-...

    thyroiduk.org.uk/tuk/about_...

  • Thank You (shaws) , I think my heads going to explode with all the reading, I'm researching blind at the moment as my daughter wont have her bloods taken so I'm not sure how well the 100mcg of T4 is affecting her. The last blood results were when she was diagnosed in May 2016. I'm finding it most difficult not to assume every ache and pain or illness is down to her thyroid, trying not to panic when she presents with yet another symptom.

    Do you think the following blood test request is ok? too much? or not enough?

    TSH, TT4, FT4, FT3, TPO, TG, B12, Ferritin, Vit D3, Iron, Folate

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