Possible hypothyroid teenager

[Capri20]

Hi everyone, I’m new to this forum. Was hoping someone might be able to give some advice on whether my daughter’s symptoms sound like they may be thyroid related.

My 15 year old daughter has been having lots of symptoms: constipation and bloating, very dry skin, cold spells, aching limbs, headaches and almost four months missed periods. Our GP tested her thyroid, which came out at 11.1 but the other level (sorry I don’t know the correct terms) was normal. She was referred to a paediatrician who repeated the blood test. Antibody test came back negative and all other results the same as before. He is saying that the levels are not low enough for her to be treated and therefore her symptoms are not thyroid related, though he can’t offer any other suggestions for her symptoms. Although before the results came back he did say it sounded like textbook hypothyroidism.

On my insistence he’s agreed to speak to the endocrinologist to see if they could give her a low dose of levothyroxine. But he really just wants to wait six months, give her laxatives and then test again. I’m kind of in shock as I wasn’t expecting this. I’m really worried as she’s going into year 11 in September and then taking GCSEs with all the stress that goes along with that. We’ve tried eliminating various foods - dairy, wheat, nightshade vegetables, soy - with no improvement. She’s finding it really upsetting and suffers from anxiety anyway, plus because of the bloating is becoming afraid of food, which I don’t want to lead to other problems. She’s otherwise very healthy, diet is excellent, lots of fruit and veg, healthy fats, and exercises every day.

Sorry for the long post. Any ideas would be really appreciated. I’m considering going private though not sure whether I can afford it.

Thanks so much.

[PurpleNails Administrator]

Sorry you and your daughter are having such a difficult time.

GPs and even specialists do not always do a full thyroid function. Contact the surgery and the hospital if necessary and obtain an actual print out of results. You need your results with ranges. Then post on here. TSH, FT4 and FT3 should have been tested and you need to see which antibodies have been included. Also important to test vitamin D, folate, ferritin and B12. These need to be optimal for thyroid health and cause symptoms.

[Capri20 in reply to PurpleNails]

Thanks so much for the reply, I’ll call them now

[SlowDragon Administrator]

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

NHS only tests TG antibodies if TPO antibodies are positive. So you need to consider testing BOTH antibodies privately

Low vitamin levels are extremely common, especially autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels NOW

Low vitamin D is virtually endemic in young teenagers

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Blue Horizon allow testing of minors

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Ask GP to arrange ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[Capri20 in reply to SlowDragon]

Thank you, this is really helpful. Funnily enough, I called the hospital to ask for my daughter’s test results to be sent to me and within an hour I had a call from the doctor telling me he was referring her to an endocrinologist. I’m still worried this won’t go anywhere so will note the above and think about private testing. If you do get private tests do you then need to go to a private specialist for any medication or can you take the results to an nhs doctor? Not sure how it works, have never had to do anything like this before.

[SlowDragon Administrator in reply to Capri20]

You can see thousands of posts on here with private test results

If vitamins are deficient NHS obligated to prescribe

If vitamins low, but not deficient, self supplementing often required

Medichecks testing results

healthunlocked.com/search/p...

Blue horizon results

healthunlocked.com/search/p...

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists

[e-mail]

Many local endocrinologists are only diabetes specialists

[Capri20 in reply to SlowDragon]

Thanks!

[Beads in reply to Capri20]

In my experience, if you do private tests, you take the results to the doc and he says ‘we’ll just check that’ and gives you a form to go get more blood tests done (and when I say ‘more’ I mean the same ones, but only those he thinks are relevant).

However, once you have the private tests done, you post the results here, get good advice and then go back to the doc armed to the teeth with what you need to say/do and hopefully get decent treatment (once he has his own results).

[Capri20 in reply to Beads]

Good to know, thanks. I believe I’m going to have to go down that route. Why does it have to be so difficult!

[penny in reply to Capri20]

Why, indeed.

Conversation with saleswoman yesterday:

“Why did you quit nursing?”

“I got really stressed and had a break-down; I started crying and didn’t stop for 2 years.”

“Oh dear. How are you now?”

“I am really, really tired and cannot lose weight even though I diet all the time and walk 5km every evening.”

“I notice that you have a ‘thyroid necklace’; have you had your thyroid tested?”

“Yes.”

“Did the results say ‘in the normal range?”

“Yes.”

“Don’t take that for an answer. Have you had any other symptoms, like losing the outer part of your eyebrows?”

“Yes, how did you know? I lost my eyebrows and my hair comes out. I’m dog-tired and cannot lose weight. I’m also on anti-depressants .”

I advised ThyroidUK and full blood tests.

Another person whose life has been badly effected through a GP (probably) not testing thyroid hormones properly but sticking a patient on anti-depressants.

When will it end?

I really hope that this lovely woman will follow up on this; she’s a nurse and does know that GPs know little about the thyroid. Problem is, we are brought up to believe doctors.

[Capri20 in reply to penny]

This is really sad! It’s good to know this forum is here though