Paediatric Thyroid Specialist: Hi, Can anyone... - Thyroid UK

Thyroid UK
102,103 members117,520 posts

Paediatric Thyroid Specialist

Hi, Can anyone recommend a Thyroid Specialist for my daughter? She is 16 and was diagnosed with Hashimoto Thyroiditis when she was 13 and developed a goitre.

She hasn’t been seen by anyone in two years so is in need of a reassessment as she is absolutely exhausted all the time!

She is taking Levothyroxine 50mg a day

Benenden have asked me to find a consultant.

Thank you

13 Replies
oldestnewest

Hasn’t her doctor done at least an annual blood test? 50 mcg a day is not a very large amount. Suggest your first option is to have her tsh, free t4 and free t3 tested and at least see if her dosage is anywhere near the mark. Other things which run low with hypothyroidism and which your doctor can test for are, b12, d3, iron and folate. If the doctor is not willing to run tests, you could get the lot done privately, via a fingerprick test at home. Have a look on the main website for where to go for this. Dont lose sight of your focus which is to get tested and a correct dosage.

At 16 i wouldnt imagine your daughter would need a paediatric specialist.

Has she readup on her condition? Something like Your thyroid and how to keep it healthy, by Dr B Peartfield is a good starting point

Once you get test results, post them on here and no doubt suggestions will be made! .

Reply

Thank you for your reply. Our doctors are useless and only test for TSH they refuse to test for anything else. In the 3 years she has had it they have never got the dosage right. Her TSH to begin with was 25 but when tested for antibodies that was at a normal level so I think she only has a mild case of Hashimotos.

When she was first diagnosed she was seen by a paediatric consultant who had no experience of Thyroid problems. Before seeing her I had researched my daughters condition and seen that B12 and iron can be deficient. When I mentioned this to her she laughed and said it was a load of rubbish! After seeing her I got them tested and they were both low including vitamin D. My daughter is now taking ferrous sulphate and B12.

I have no faith in our doctors so am trying to go private. I think I will have to have blood tests done this way. Can you recommend any in Kent?

Reply

Thank you for the name of the book, I have just ordered it for my daughter 😊

Reply

Lilykaren1347

Benenden have asked me to find a consultant. Are you talking about the Benenden school or the private health company here?

Either way, I would have thought the first port of call would be your daughter's NHS GP, who can do (and surely should have already regularly been doing) the necessary testing to find out whether 50mcg levothyroxine is an appropriate dose for your daughter to be taking. Once there are some thyroid test results to look at, they may indicate the next step in sorting out why your daughter is constantly exhausted.

Reply

Yes, it’s Benenden Hospital, my doctor has referred her and has asked for me to find one suitable.

My doctors are not very good at long term care. I ring every 6 months and book my daughter in for a blood test. When we get results I have to ring every time or they will not bother. They adjust it every time from 75 to 50.

They will only test for TSH. Initially when she was first was diagnosed the only tested TSH which was 24.4 and T4 which was 9

I think it would help if like you say we had a proper full blood test to see what the thyroid is doing but I think I will have to look for a private company to do so

Reply

Ah ok, that all makes more sense :)

You could start the ball rolling by arranging private blood testing for your daughter with one of the testing companies that many thyroid patients here use. Details are on the Thyroid UK website here thyroiduk.org/tuk/testing/p...

You could also ask Thyroid UK for their list of thyroid friendly doctors. Send an email to request this: tukadmin@thyroiduk.org

Reply

Sorry, I forgot that your daughter is under eighteen which rules out your being able to buy private test kits from certain companies. I think Blue Horizon may be one that will help, but contact them to make sure. bluehorizonmedicals.co.uk/a...

Reply

This is such a great help! Thank you so much😊

Reply

Just testing TSH is completely inadequate

For full Thyroid evaluation your daughter needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with Hashimoto's

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Ask GP to test vitamin levels and to run coeliac blood test too

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Blue Horizon will agree to test minors. Suggest you pay the extra for private blood draw or nurse to visit at home

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

Link about thyroid blood tests

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

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

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, sometimes 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

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

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

restartmed.com/hashimotos-g...

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

Email Dionne at Thyroid Uk for list of recommended thyroid specialists


 please email Dionne at

tukadmin@thyroiduk.org

Reply

Thank you so much for taking the time to give me such valuable information. My daughter has been left to get on with it and doctor refuses to test anything but TSH as he doesn’t see any point.

I follow Isabelle, she is amazing!

My daughter was tested negative in the beginning for coeliac disease and her antibodies were normal range so it is very puzzling. Her TSH was 24.4 T4 9

Thank you for all the help it’s such a help when the doctors/NHS just leave you too it

Reply

First step is to get full Thyroid and vitamin testing

Come back with new post once you get results and members can advise on next steps

Supplementing low vitamins can make significant improvement to symptoms

Her Levothyroxine dose is likely too small. Improving vitamins will help use thyroid hormones better then dose of Levothyroxine can get increased

Improve Thyroid Treatment campaign on Facebook (a closed group - you need to request to join)

Once you have joined. Search "Kent" in previous posts ......there's info on good endocrinologist and Centre in Kent .....info from Jan 2018

Reply

Brilliant!! Thank you!! I will get onto it.😊

1 like
Reply

Did you get this info from Improve Thyroid Treatment campaign yet?

Reply

You may also like...