Teenager - advice anyone?

[camomile9]

My teenager struggling with hypothyroid, on medication, feels even worse. Missing school and cant concentrate to do schoolwork at home, missing all her favourite activities too. This is all quite new and I dont know what to do! Doctors say it must be something non medical e.g. bullying. We've asked her that for 3 years before she was diagnosed. Seems like the thyroxine makes her feel so nauseous and headachy she cant face anything. Any ideas?

[SeasideSusie Remembering]

camomile9

According to your profile your daughter was diagnosed 2 months ago with autoimmune thyroid disease and was started on 50mcg Levo, now on 100mcg Levo.

How old is she? "Children" - but we don't know what age is classed as children - should be started on 25mcg. Then every 6-8 weeks there should be increases in dose of 25mcg at a time. It looks as though she has been started on the adult starter dose and rather than just a 25mcg increase she was given a 50mcg increase. This could be too much too quickly.

Also, what brand of Levo is she on? Is she still on the same brand now her dose has been increased? Some people react to an ingredient in the tablet, the one we hear about most for adverse reactions is Teva brand, but some people do report reactions to other brands, some people can take any brand without a proble, it's all very individual.

What are her test results? You/she should get into the habit of asking for a print out of her results for every blood test, just ask at reception. Don't accept verbal or hand written results (mistakes can be made), we in the UK are legally entitled to our results so always get a print out. Post results, including reference ranges, on the forum for comment.

For a full picture the results we need to see are for

TSH

FT4

FT3

Thyroid antibodies (but you have confirmation of autoimmune thyroid disease so these need not be repeated)

Vit D

B12

Folate

Ferritin

Have you looked into autoimmune thyroid disease - often called Hashimoto's by patients. This is where the thyroid is attacked and gradually destroyed. Symptoms and test results can vary when Hashi's is present and the patient can swing from going through a hypo period and then a "hyper" period (as though overmedicated or having overactive thyroid) and back to hypo.

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. You need to read, learn, understand and help yourself where Hashi's is concerned.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee but it's worth a try for a few months..

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.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies, which is why it's important to test the vitamins that have been listed above.

[NWA6]

😔 you have my sympathies camomile9. I’m going through the same with my daughter, it’s so hard.

Are the GP’s doing regular full thyroid tests? I’d agree with SeasideSusie. Maybe she’s been started on too high a dose? Probably her vitamin/mineral levels are out of whack. Can you get them checked?

[jimh111]

It would help if you could post her blood test results. Usually it's good to start patients on higher doses, up to 100 mcg daily. Children (not infants) tend to have similar doses to adults, they may be smaller but they turn over the hormone quicker. Is she taking Teva levothyroxine? Some patients have problems with Teva.

I recommend you get copies of all her results and set up a little file, they will be most useful in the future as she may have to fight for better treatment and if new therapies come along copies of her previous results will help.

[camomile9]

Thanks so much to you all, really helpful. Will get a print out next time.

They have done full blood count several times, the doctor seems a real endocrine geek. Now testing cortisol, not sure what that means.

Have now floated gluten free idea with her, now have to get buyin from her dad who doesnt believe in that kind of thing!

And will try to get another brand, seems like its side effects of the Teva.

No sign of overdose. She is 13 but 5ft 5 and built like a rugby player, and the doctor said 100mg is still a low dose for her size.

thanks all, I am a bit slow at checking back but will do

[Lizzo30]

Have you looked into your daughters hormones ? High estrogen can trigger autoimmune disorders , natural progesterone cream might be worth considering to balance / moderate estrogen - that's what progesterone does it moderates estrogen larabriden.com is an excellent blog by a nutritionist who specialises in female hormones - well worth a read to learn more about hormones

[camomile9]

Thanks that is very interesting. Im sure there is a connection, it cant be just coincidence she started to get ill at 9-10 years when she started to put on weight and get fatigue. And the mast cell issue is probably relevant because she has constant nose congestion. She is very very resistant to all tests, medications, supplements or appointments. But I will certainly ask the private endocrinologist when we see her next year (when she reaches 16, she can't be seen before that).