Hello I have joined this group as my 11 year old daughter has recently been diagnosed with hypothyroidism.
She ended up in hospital as the GP refused to listen to my concerns. Weight gain, lethargy, low mood, no energy, constant complaints of pains, struggling at school.
My daughter has been on levothyroine, varying doses for 3 months. She is currently on 50mg and 75mg alternate days.
The hospital said it’s the worst case in terms of numbers they have seen in a child, it was pretty much not working. At all. They have said it was caused the auto immune system.
She has visibly lost weight and seems more sprightly, has made a new friend and never ever forgets her tablets.
There are 2 negative aspects that remain: severe leg pain, both legs daily but in varying places and hair loss. She has the most gorgeous red hair and it’s worrying me a bit. I’m hoping it stops soon, as she never had it before the meds.
The leg pain however is causing me sleepless nights, I need her to walk and get motivated and fitter but she’s in pain! I’m worried it’s something more sinister. Any advice appreciated
TIA
Written by
Shaws1
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I'm so sorry our daughter has to put up with this awful condition at such a young age.
As it has been confirmed "They have said it was caused the auto immune system" then it is autoimmune thyroiditis aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
Our resident Hashi's expert is SlowDragon who will no doubt pop along later, but for now you can help reduce the antibodies by introducing a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Unfortunately most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies and the fact that your daughter has leg pain can point to low Vit D, hair loss can be low ferritin (and hypothyroidism). Although as the hair loss only been since starting thyroid hormone replacement, it would be an idea to look at the brand of Levo that she has been prescribed. Is it Teva by any chance? Many people have awful side effects from Teva but do well on another brand.
If not already done, ask for vitamins and minerals to be tested:
Vit D
B12
Folate
Ferritin
Do you have your daughter's test results? If so can you post them, along with the reference ranges, for members to comment.
Varying doses of Levo for 3 months doesn't sound right. It's normal to start Levo, possibly at 25mcg for your daughter, then retest and increase dose every 6 weeks, so one would expect only one or possibly two increases in dose up to now.
Does your daughter take her Levo correctly for best absorption? We always advise here to take Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, for an hour either side as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
And when booking thyroid tests, always book the very first appointment of the morning and fast overnight (by that it means delay breakfast until after the blood draw, water is allowed) . This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It can also lower after eating and coffee also affects TSH. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Welcome to the forum, suggest you read as much as possible about Hashimoto's. (Autoimmune Thyroid disease)
Looking for the root cause is often the key.
Ideally ask GP for coeliac blood test before asking your daughter to try strictly gluten free diet
Are there other autoimmune diseases in the family?
Does she have any gut symptoms?
Or had tonsillitis or tonsillectomy or repeated antibiotics
Essential to test vitamin D, folate, ferritin and B12 with hypothyroidism m but especially with Hashimoto's
Extremely common for vitamin levels to be too low
Low vitamin D can cause bone and leg pain. Low Ferritin can affect hair
Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect 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.
Dairy is second most common.
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)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
She (and you as her guardian) is legally entitled to printed copies of blood test results and ranges
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018)
ALWAYS get actual results and ranges on all tests.
Never accept normal as a result.....it's an opinion....often a wrong one
Vitamins too. They may be "within range" but they may not be optimal for thyroid hormones to work well.
So yes definitely get copies of vitamin D result and push for B12, folate and ferritin to be tested too
Thyroid dose should only ever be increased in 25mcg steps. Not surprised she couldn't tolerate such a large increase from 50mcg to 100mcg in one go
Many people find Levothyroxine brands are NOT interchangeable.
Once you find a brand that suits your daughter best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. (Though it is the only one for lactose intolerant patients)
Pick up pate prescription from surgery, this enables you to take prescription to variety of pharmacies until, you get the brand you want.
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
She used to complain of stomachs ache a lot but hasn’t since taking medication
But she does have loose stools often
No tonsillitis or any other illness requiring antibiotic
A very healthy child until this
I will certainly ask for all test results to be sent to me
Although they were done at the hospital not at GP hopefully that won’t make a difference to availability
I will ask for folate ferritin and B12 year too
I wonder if an over the counter Vit D would just help anyway regardless of test result ??
I would be happy for her to be gluten free but she has a lot of autistic tendencies (undiagnosed) and good is a major issue!
She has been referred to a paediatric consultant with special interest in thyroid
After reading your reply I am now considering this as a night time med but my concern is she often had supper such as toast or cereal before bed so she would never really have an empty stomach before bed ?
Hi Shaw's - it would be better to test vitamin D before you supplement - it is possible to have too much in your system. The GP will only treat if vitamin D is <25, but we we would suggest supplementing anything <75.
We tend to recommend BetterYou vitamin D spray - liquid form is absorbed better by the body. If you let us know your daughter's level, someone will recommend a dosage. If the doctor does supplement her, please also let us know what dose they've given.
I'm confused when you say your aunt is on medication for coeliac disease... If your daughter tests positive, the only option is a 100% gluten free diet. Depending on where you live, you can get gluten free food on prescription, but there is no medication for the disease.
It's important for your daughter to keep eating gluten until she is tested.
You should wait at least 1 hour after food before taking thyroxine.
if you can get online access for blood results you might also be able to read any letters from Hospital to GP which should give the blood test results when your daughter was first diagnosed. Otherwise phone the secretary to the endo team and ask for a copy. I recently read my letter from endo to GP which was full of inaccuracies such as: patient has had a mastectomy. As far as I can tell, with my hypo brain, I am still intact!! LOL
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