Anyone with a congenital atrophied thyroid like myself?

Told congenital atrophied thyroid (only one sided thyroid gland) and virtually no info on google that's helpful.

Love to hear from anyone that has. I'm suffering medically and keen to know if other people in same boat.

X

[radd]

Welcome UDUN,

Sorry to hear of your health issues. Post any recent thyroid hormone blood test results complete with ranges (numbers in brackets) for members to comment.

Also any iron//nutrient results as deficiencies are common with low thyroid hormone.

.

Congenital Hypothyroidism

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

[SilverAvocado]

Are you only starting treatment as an adult? A good friend of mine has congenital hypothyroid, did mostly fine on Levo (although I think was quiet and withdrawn for much of his life), but started having problems in late 20s. Mainly from ignorant doctors fiddling with doses, which is a common story for all kinds of hypos!

[Hidden in reply to SilverAvocado]

Hi,

I am only diagnosed Congenital Atrophy Thyroid (they believe congenital) as only discovered at 47 after suffering considerable medical problems.

No hypothyroidism has been suggested, however so much of my conditions match thyroiditis and hypothyroidism.

Apparently congenital Atrophy Thyroid is relatively rare and therefore I have found Dr's have no knowledge but astonished when told as they can't see a scar... and say 'where is your scar from half thyroid removal'! Clear sign no knowledge lol.

I am desperately trying to find both other people with half a thyroid not from clinical removal and a specialist.

Very frustrating so far.

X

[ChristinaT]

How did your diagnosis come about?

[Hidden]

I had an ultrasound relating to lymph node issues, and the Radiologist who picked up on no left side thyroid and fact I hadn't had thyroid or surgery (noticed I had no scar). Further nuclear test done from then, now annually.

I'd had three previous same area scan before that, within the year before found, and wasn't found or noticed... or maybe both sides were there..who knows eh x

X

[doe333]

Lots of luck -- my thyroid is atrophied too and endocronologist has done nothing, so am on a low dose of levthyroxine .o888 that my doctor put me on. Previous doctor had meon 1.25. Am tired, no oxygen, cold all the time, sleepy all the time, getting depressed. If you find an answer let me know.

[Hidden in reply to doe333]

Hi ,

How was your thyroid atrophied and to what extend (one side or part of either both sides?).

Did you get to see a specialist endocrinologist?

X

[doe333]

auto immune diseases I think destroyed it -- yes, saw endo, he gave me nothing, no projection of what's to come, nothing of what we can do, just come back in six months.

[Hidden in reply to doe333]

Alot of Endo's have little thyroid knowledge, specialise in Diabetes my way. So frustrating. You should have a thyroid nuclear scan with iodine test at least yearly.

I am convinced many of my problems are atrophy/autoimmune related but not getting anywhere on that.

Did they say which autoimmune?

X