Re my 19yr old son - I will not have him left to rot

[Swanagegirl]

Hi,

Looking back over my life I have had Hashimoto's most of my adult life but only treated in the last 3 yrs. (I take T3 - Levo worked for a year then didn't… I did Reserve T3 test & Bingo).

My sons have many diagnosed conditions ( as do I)

Polyglandular Autoimmune Syndrome Type Two comprising of :-

Addison's Disease, Pernicious Anaemia, Type One Diabetes, HAAF, Coeliac Disease. They both wear two medical pumps one with insulin & the second pump with cortisol.

They were also found to be Hashimoto's in 2012 - HOWEVER for various reasons were not started on any medication.

Fast forward to now

Child Two 19yrs

Very unwell with in my view Hypothyroid symptoms - Exhausted, headaches, sometimes low body temp ( haven't test consistently enough) but a number of 35.2 - 35.5 at night. Can't think straight, can't do any college work ( this is last 2 months - previously doing very well in college). Frequently can not play computer games, or watch TV or even listen to audio tape.

Results

Ranges T4 12-22, T3 4-6.8, TSH 0.27–4.2

TPO antibodies showing 9.0 Range 0-32 ( hospital lab says this is negative)

5/3/19 T4 14.2 T3 - TSH .26

29/5/19 T4 10.9 T3 - TSH .76

5/6/19 T4 13.0 T3 4.2 TSH .95

I am not prepared for my son to suffer for years or even months being unwell. He knows no time when he felt well. Despite Diabetes & Addison's being under control he has felt ill for years (as both my boys have the same I can compare easily as to how they are).

A few things need tweaking Re B Vitamins & vitamin D - but apart from that other tests pretty ok - I have pages & pages. The stand out is Thyroid not being ok.

I will do private tests end of next week for son re thyroid again.

Thoughts please …. Endo thought thyroid was fine yesterday. So he is going to be of no help.

[Cooper27]

It looks as though he has central hypothyroidism, where the TSH and T4/T3 will all be below range.

This is a link with more about it: endocrinologyadvisor.com/ho...

I will look for a better link, but every time I do, I lose my posts!

It sounds like an unaware endocrinologist, so it could be worth sending him information and highlighting how your son's results meet these criteria, and just asking him to reconsider.

[Cooper27 in reply to Cooper27]

This link may also help:

bestpractice.bmj.com/topics...

[greygoose]

I agree, it does sound like Central hypo. Central hypos is where the problem lies with the pituitary (Secondary hypo) or the hypothalamus (Tertiary hypo) rather than with the thyroid itself (Primary hypo). For whatever reason, not enough TSH is produced to stimulate the thyroid, so thyroid hormones are low, and TSH is low. Your son's FT3 is very low, so not surprising he has a lot of symptoms. But, because it's in-range, doctors think it has to be OK.

Doctors believe Central hypo to be rare, so never even think about it, let alone look for it. But it's not as rare as they think. But, because they never look for it, most of them have never seen a case. It's a vicious circle. They need to be nudged in the right direction.

[Swanagegirl]

We had one T3 result which was 4.2 range 4.0 - 6.8 ( rubbish result)

[SlowDragon Administrator]

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

He is going to need dose increase in Levothyroxine

but GP unlikely to agree

You need a pituitary and adrenals and thyroid specialist endocrinologist

Roughly where in the UK are you?

[Swanagegirl in reply to SlowDragon]

London - bizarrely child has Endo - he thinks all is well - Clearly it isn't & I do not have energy to fight so happy to go elsewhere for this issue.

[Swanagegirl in reply to SlowDragon]

Oh child is not on any thyroid meds