Possible secondary hypothyroidism

[Capri20]

Hi everyone,

I was hoping for an opinion on my daughter’s (aged 15) 3rd round of blood test results. I know these probably aren’t as complete as they could be but they are all I’m going to get for now.

FBC normal (no numbers)

Free T4 12.3 (12-22) - on previous 2 tests was 11.1 and 10.4 respectively

Free T3 2.9 (3.1-6.8)

TSH 2.9 (normal)

LH 0.8 (low but detectable)

FSH 5.6

Oestradiol 108

Vitamin D 94 mol/L (I give her a vitamin D spray)

All other hormones normal

My daughter was referred from a general paediatrician to a paediatric endicronologist on my insistence. She’s been given 25mcg of levothyroxine as a trial and we are waiting for an MRI of her pituitary gland to look for possible benign tumours that could be suppressing her LH.

The doctor is still quite certain that her symptoms (stopped periods, cold spells, aching limbs, dry skin, hair falling out, constipation and bloating) are not caused by her thyroid but is suggesting secondary hypothyroidism.

My daughter is quite small, she was around the 12th percentile for both height and weight but over the last few weeks has lost a few pounds, putting her in the healthy weight range but right at the bottom. Although she’s always been petite and we are a small family. I’ve seen some mention on this site about low calorie intake possibly affecting the thyroid. It’s a bit of a vicious circle though, because the bloating and constipation is making her cautious about eating. She does eat well at mealtimes and very healthy but is afraid of anything that may cause her to feel bloated and unwell. I also have ibs so am also having to stick to a very healthy simple diet to avoid symptoms. Our digestive symptoms are very similar but seemingly for different reasons.

Any advice would be really appreciated! Thanks in advance.

[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

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

About 90% of primary hypothyroidism is caused by autoimmune thyroid disease, TSH is frequently very unreliable with Hashimoto’s

Ask GP to test vitamin levels, thyroid antibodies and prolactin levels too

Plus coeliac blood test.

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 will allow testing of a minor

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Please add actual results and ranges for folate, ferritin and B12 if been tested

Thyroid levels should be retested 6-8 weeks after each dose increase in levothyroxine

Come back with new post once you get vitamin and antibodies resting

And thyroid results after 6-8 weeks

[SlowDragon Administrator]

Reading your other posts

Your daughter needs BOTH Tpo and TG antibodies tested ...NHS refuses to test TG antibodies if TPO are negative

More common to have High TPO or high TPO and high TG antibodies, but it’s not rare to only have high TG antibodies

20% of Hashimoto’s patients never have raised antibodies

An ultrasound scan of thyroid can be very helpful

Suggest you get FULL Thyroid and vitamin testing for yourself too

IBS is common with gluten intolerance and Hashimoto’s

[Capri20 in reply to SlowDragon]

She’s only had the NHS antibody test which came back negative. Given the levels above do you think it’s best to have her tested privately? When the doctor says it could be her pituitary gland not functioning properly I’m not sure I understand what that means exactly.

I’ve thought about thyroid testing for myself but if it’s private can only afford to get one of us done for now. My issues only started last December.

[SlowDragon Administrator in reply to Capri20]

The fact you both are gluten free...suggests autoimmune thyroid disease

GP should test vitamins, prolactin and coeliac blood test and ultrasound scan of thyroid

[SeasideSusie Remembering]

Capri20

The doctor is still quite certain that her symptoms (stopped periods, cold spells, aching limbs, dry skin, hair falling out, constipation and bloating) are not caused by her thyroid but is suggesting secondary hypothyroidism.

That sounds about right.

Central Hypothyroidism is diagnosed when TSH is normal, low or minimally elevated with FT4 low/below range. She fits this criteria and also has below range FT3.

Central Hypothyroidism is where the problem is not with the thyroid and covers both Secondary Hypothyroidism, where the problem is with the pituitary, and Tertiary Hypothyroidism where the problem lies with the hypothalamus.

[Capri20]

Thanks, how would this normally be treated?

[humanbean in reply to Capri20]

Primary, secondary, and tertiary hypothyroidism are all treated the same way - with replacement of the missing thyroid hormones.

Note that many doctors lump secondary and tertiary hypothyroidism together and call it central hypothyroidism.

I should also mention...

With central/secondary/tertiary hypothyroidism it is essential that doctors don't treat your daughter based on her TSH. She will always need her Free T4 and Free T3 measured and dose will have to be based on that.

[Capri20]

Thanks!