jimh1115 years ago

Her fT4 is quite low which suggests hypothyroidism, especially with the high antibody count. I'm not sure these symptoms are a consequence of hypothyroidism. I would ask for a referral to a paediatric endocrinologist as childhood hypothyroidism can be complicated. It's possible her thyroid hormone levels will settle down. A second blood test a month or two later might give an indication but it seems sensible to try and get a referral and let the endocrinologist do the follow-up.

Diarrhoea and sweating are signs of hyperthyroidism but with high antibodies you can swing from hypo to hyper, another reason to have more expert care. I would adivse the teachers of the potential thyroid problem, they can make allowances for her and perhaps alert you if they notice a change.

cazlooks in reply to jimh1115 years ago

I agree a referral is necessary, we've been through this with my daughter and have great sympathy for you at this time as it is terrifying to see it happen.

Reply (0)Report

marigold225 years ago

With a TSH of 10.3 (over the range and we need TSH to be under 1 to feel well) and Free T4 of 11.2 (under range), and thyroid antibodies of 805.4 (they should be under 34); she is very unwell and must be feeling horrible. She has Hashimoto's Thyroiditis as at least one of her two thyroid antibodies are raised. I haven't looked at any of your previous posts and don't know your daughter's history, but if you look around this forum you will see that GPs and even endocrinologists are failing hypothyroid & Hashimotos patients. You must also ask her GP to test vitamin B12, vitamin D3, folate, ferritin (as reallyfedup123 says). If her GP continues to be unhelpful, you could pay for a private thyroid blood test medichecks.com/thyroid-health. She needs to have that test as early in the day as possible, not have eaten or drunk anything for 12 hours, only water.

Purplepinkpixie in reply to marigold225 years ago

Free T3 2.4 (3.1 - 6.8)

She has not been diagnosed with anything

Reply (0)Report

marigold22 in reply to Purplepinkpixie5 years ago

Whoever has not diagnosed her with anything is negligent. Her blood tests show that she is very unwell. I suggest you at least get a second opinion and keep on pushing for the best specialist until that specialist agrees that your daughter is unwell

Reply (0)Report

marigold225 years ago

P S You also need to see what level her Free T3 is. The NHS often refuse to do this blood test for some reason, but it's vital.

Purplepinkpixie in reply to marigold225 years ago

Free T3 2.4 (3.1 - 6.8)

Reply (0)Report

SlowDragonAdministrator in reply to Purplepinkpixie5 years ago

She is very hypothyroid, very probably has extremely low B12, folate, ferritin and vitamin D too

Her high antibodies confirm she has Hashimoto's also called autoimmune thyroid disease

Make an urgent appointment to see a different GP. She needs full evaluation and to see a paediatric endocrinologist

She will also need testing for coeliac disease

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get vitamin testing from GP.

Private tests are available but can be a grey area testing a minor

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have mo

All thyroid tests should be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

You need an Endocrinologist

Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org

Reply (0)Report

JOLLYDOLLY5 years ago

Hi,

In my opinion as she needs medication. The TSH levels are not a good or accurate guide to go by really and her other readings suggest your daughter is under active. You are entitled to get a referral if you are not happy.

I was born with the condition so have been on it all my life, I also have antibodies but my TSH is almost non existent.

Once under the hospital, the Consultants should keep a regular check on her right up to at least 16. Then she will be under the adult Endo's.

The only thing they changed for me as a child, was when I was five, I was on too much and had a bone age of a seven year old, but it was soon rectified.

Until the medication is in your daughters system, (normally takes a while to regulate), you will find she is sleepy, moody, over sensitive, weight gain, dry skin and hair, tummy troubles too, normally constipation. Her school work may initially suffer, but just try not too worry, it will rectify itself once the medication has kicked in.

Due to her bones bruising, I would also ask about Vitamin D supplements, get her folate and ferritin levels checked for pernicious anaemia and B12 deficiency. These have similar symptoms regarding tiredness etc and can (not always) walk hand in hand with underactive thyroid conditions, although it may not show until later in life. But I don't think it would harm her to have a vitamin D supplement, to make her bones stronger especially as she is still growing.

When on the right dose, your daughter should and will lead a normal life. BUT, if unsure and not happy with the opinion of a GP or Endo, please seek a second opinion, as some fail to realise that the two hormones that are in the medication are an absolute must and must be at the optimum level for quality of life. Also it can affect fertility if not on the right dose.

Let us know how you get on, but keep pushing. Remember a GP "may be" trained but does not specialise in Thyroid conditions. Remember, their diagnosis is merely an opinion and you have the right to fight for your daughter by getting a second one. My mum was always on their case (bless her heart). Don't let them frighten you with their theories.

Take care and hope you can get it sorted

marigold225 years ago

Hi, I think something has gone wrong as I can see your latest reply in my general inbox but not on this site. Your daughter's FT3 at 2.4 is under range and it should be at the top of the range.

klr315 years ago

I think we should get a petition started for better training in thyroid problems for endocrinologists and doctors. There seem to be so many sufferers getting poor advice and treatment .

Karen