SlowDragonAdministrator5 years ago

Has she also had other thyroid tests

TSH, FT4, FT3 and TT4

Would ask GP to test her vitamin D, Folate, ferritin and B12 tested

Plus ask for full evaluation for coeliac.

Glitterblue in reply to SlowDragon5 years ago

TSH 85.22 (0.2 - 4.2)

FREE T4 9.2 (12 - 22)

FREE T3 2.6 (3.1 - 6.8)

FERRITIN 11 (15 - 150)

FOLATE 1.8 (2.5 - 19.5)

VITAMIN B12 144 (190 - 900)

VITAMIN D TOTAL 25.5 (25 - 50 DEFICIENT)

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shawsAdministrator5 years ago

Your daughter has an Autoimmune Thyroid Disease commonly called Hashimoto's due to having thyroid antibodies in her blood.

The antibodies wax and wane (sometimes too much and at other times less) and attack the thyroid gland until she becomes hypothyroid.

The antibodies can be reduced by having a gluten-free diet.

Always get blood tests at the very earliest, fasting (she can drink water) and when on thyroid hormones allow a gap of 24 hours between the last dose and test and take afterwards. This helps keep the TSH at its highest as that's all doctor seems to take notice of as well as the T4.

The doctor should have prescribed levothroxine for her but many doctors are so poorly trained they only take notice of the TSH and may not prescribe until her TSH is over the range (I hope not).

Glitterblue in reply to shaws5 years ago

TSH 85.22 (0.2 - 4.2)

FREE T4 9.2 (12 - 22)

FREE T3 2.6 (3.1 - 6.8)

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shawsAdministrator in reply to Glitterblue5 years ago

She has to be feeling, very, very poorly the little thing. Mine was 100 and theoretically we should be diagnosed if it goes above range which in her case is above 4.2.

The aim is to bring TSH to 1 or lower with FT4 and FT3 towards the upper part of the range and both are low, particular FT3 which is the driving force for our body to function, i.e. T4 - thyroxine or levothyroxine is a prohormone and has to convert to T3 (liothyronine) and it is this hormone which is the 'battery' in our T3 receptor cells which drives everything from head to toe.

I hope she's been prescribed.

Her vitamins and minerals are very low and I will add in SeasideSusie who will advise.

I can tell you but you will sense automatically how unwell your little girl is. A blood test should be done every six weeks (it takes that time for levo to begin to build up in her system and I don't know if a child's dose is equivalent to an adults or not. Hopefully there is someone who is able to treat your child who has knowledge and sympathy. Everything is affected from head to toe. I assume symptoms will be similar whatever age and here is a list. Obviously we don't get all of them:

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

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Glitterblue in reply to shaws5 years ago

Thanks Shaws, I have an appointment with our GP tonight so any advice would be great before then.

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shawsAdministrator in reply to Glitterblue5 years ago

I hope he is a good doctor and knows what to do and he definitely has to prescribe.

The aim is to get TSH to 1 or lower which may take a little while as the dose will be increased every six weeks until it around 1. Some doctors think that anywhere in range is fine but this isn't so.

With Hypo everything slows down, heart/temp etc, digestion so as levo is increased everything should slowly become normal again. Definitely there should be no rush and children might take to it like ducks to water.

She will be taking thyroid hormones for life.

(I am not medically qualified and had undiagnosed hypo)

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SlowDragonAdministrator5 years ago

Your little girl must be feeling very poorly

Being so young she should almost certainly be overseen by an endocrinologist. Ask for urgent referral.

Here's a link to SeasideSusie general advice about vitamins, but obviously with a small child these will need careful management and monitoring

healthunlocked.com/thyroidu...

Personally I would insist on testing for Coeliac too. Initially just blood test, but it's notoriously unreliable, only reliable test is endoscopy

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...

shawsAdministrator5 years ago

Levothyroxine has to be taken on an empty stomach with a glass of water to prevent tablet sticking in throat. Preferably first thing and not to eat for about an hour. Or at bedtime as long as last eaten about 3 hours before. Protein takes longer to digest so 3 hours is fine. It can be less than 3 hours if no protein eaten.

If bedtime dosing this should be missed if having a blood test next morning and taken afterwards and bedtime dose as usual that night.

Clutter5 years ago

Glitterblue,

Your little girl has autoimmune thyroiditis (Hashimoto's) and is very hypothyroid. Her GP should start her on Levothyroxine. She's probably feeling very unwell indeed.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range but juvenile ranges may be a little different. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. The starting dose is rarely the end dose. You should expect dose increases every few weeks until thyroid levels are optimal and symptoms improve. Symptoms may lag behind good biochemistry by several months.

Your daughter should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after her blood draw.

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

Your poor little girl is also vitD, ferritin, B12 and folate deficient.

Vitamin D is deficient. Your GP should refer to local guidelines or the NICE CKS recommendations for treating vitamin D deficient children cks.nice.org.uk/vitamin-d-d... Vitamin D should be taken with the fattiest meal of the day and 4 hours away from Levothyroxine.

Ferritin is deficient and this may indicate iron deficiency anaemia. Your GP should do an iron panel and full blood count to check. If your daughter is prescribed iron it should be taken 4 hours away from Levothyroxine.

B12 and Folate are deficient. GP should check intrinsic factor to rule out pernicious anaemia causing B12 deficiency. If PA is confirmed your daughter will require B12 injections every 3 months for life. B12 injections should be initiated 48 hours prior to taking 5mg folic acid daily to correct folate deficiency. healthunlocked.com/pasoc are the experts on PA, B12 deficiency and folate deficiency if you want further information and help.

knitwitty5 years ago

Just one other observation, if you are asking for your daughter to be tested for coeliac disease under no circumstances eliminate the gluten from your daughters diet prior to blood tests and biopsy, as the results could throw up a false negative result if your daughter is not eating a substantial amount of gluten containing food daily

helvellaAdministrator5 years ago

Glitterblue,

Just feel I need to bring to your attention that for some blood tests there are specific paediatric ranges.

This is definitely the case for some/all thyroid tests.

It is important to ensure that the appropriate ranges are considered.

Many NHS labs have websites on which they post ranges. Or, if needed, call the lab directly.

(Paediatric ranges are not always as well researched as adult ranges - but at least everyeone involved should be aware of them.)

Heloise5 years ago

Hi Glitter, how distressing for you and your poor child. Conventional doctors are so ignorant and even in the little they know they do have some sort of treatment and then lag in that as well. What IS known in other medical worlds is that this autoimmune disease has a trigger like gluten or dairy and as long as she consumes those the antibodies will continue. She should be given supplement thyroid hormone and when they do it may be levothyroxine which is the cheapest for them but in the meantime you have to find ways to nourish her as she is probably very malnourished. Juicing vegetables and fruits and whatever way to get good fats into her diet. Look into the autoimmune paleo diet. It's really urgent that you concentrate on this aspect so don't sit back and wait for doctors instructions as they will probably never come.