Big shock regarding my congenital hypothyroidism!

[Hypomadness80]

Hi everyone,

My mum was going through her files and paper work to declutter, and came across my birth book from 1980! I read through it, and see my diagnosis of my congenital hypothyroidism. However, my mum said to me all my life that I didn't have a thyroid gland, when in fact, it was that I don't have thyroid tissues. Looked it up online if there was any difference, but couldn't find anything. All I can find is that the tissues are producing the iodine to secrets the hormones. That should be a good proof to any endo or doctor that I am not producing enough t3. Shouldn't it? Why no doctors or anyone before picked up on that. I feel very stupid now that I went around all my life telling drs that I didn't have a gland when it was just he tissues...

[MichelleHarris]

You would think they would have looked at that hospital record anyway wouldn’t you? On their own records x

[Hypomadness80 in reply to MichelleHarris]

Sorry, I forgot to mention I was born in France in an English hospital, so may be they didn't transfer the infos at that time. But I know as soon as my parents came back to Ireland when I was 6 months old, they went to see an endocrinologist. As you said you'd think he would have looked at the birth book. The notes were in English as well!

[MichelleHarris in reply to Hypomadness80]

Yes you certainly would of x

[greygoose]

Surely that is the same thing, no? If you don't have any thyroid tissue, you don't have a thyroid gland. The tissue is the gland and the gland is the tissue.

All I can find is that the tissues are producing the iodine to secrets the hormones.

Um… no. The thyroid doesn't produce iodine. It takes iodine from the blood - it comes from your food - and adds tyrosine, and that becomes thyroid hormone. But, if you don't have a thyroid, you cannot produce thyroid hormone.

That should be a good proof to any endo or doctor that I am not producing enough t3. Shouldn't it?

Why? The thyroid produces both T3 and T4, but the bulk of the T3 comes from conversion of T4. But, they can see how much T3 you have in your system, and how well you convert, by looking at your blood test results for FT4 and FT3.

[Hypomadness80 in reply to greygoose]

Hi greygoose. That's why I was confused. I read this article google.com/amp/s/www.hopkin...

And it sounds like the tissue was a part of the thyroid gland. That's why I was confused. So thanks for clarifying this to me.

When I told the endo and drs that I didn't have a gland and wanted to try T3, all they told me was that the t3 was converted naturally by the body through the liver and other parts...

That's why I wanted a proof that I needed T 3.

I've switched from NDT about a month ago now to levo and t3 and I'm already doing better. So I want my luggage as full as possible, ready to confront my gp for my next appointment.

[greygoose in reply to Hypomadness80]

Well, that all sounds very logical, I don't know why it confused you. A gland is made up of tissue, which is just another name for a group of cells.

Where you did get confused was this:

Most of the thyroid tissue consists of the follicular cells, which secrete the iodine-containing thyroid hormones.

The thyroid doesn't secrete iodine, it secretes iodine-containing hormone. I don't wish to lecture you in punctuation, but when you have a hyphen between two words, it means the two words are fused together to make one word, what we call a 'hyphenated adjective'. We have to be careful of that.

That's why I wanted a proof that I needed T 3.

The proof is not in the fact that you don't have a thyroid - they won't accept that. It's in the fact that you're a poor converter. To prove you're a poor converter, you need the FT4 and the FT3 tested at the same time, and then compare them. Have you ever had those two tested at the same time?

[Hypomadness80 in reply to greygoose]

Well I feel stupid now! 🙈 sorry...

I had my blood tested at home about a month ago. I posted them here. I was on 3 grains of NDT then. My t 3 was higher than before I started on NDT but my t4 was low in the range. I am now on 150mcg of levo and 25mcg of Cynomel. I'll check my blood again in a month to see how it goes.

[greygoose in reply to Hypomadness80]

No, please, don't feel stupid. You cannot know these things if no-one has ever explained them to you.

You cannot tell how well you convert when you are taking T3 - either in NDT or separately. To know how well you convert you have to be on levo only.

Your FT4 is bound to be low in-range when taking T3, that's the way it works. That might be ok for you, or you might need more. Only trial and error will tell you that.

[Hypomadness80 in reply to greygoose]

as always thank you very much greyhoose!

[greygoose in reply to Hypomadness80]

You're welcome.

[LivingWithHT]

In all honesty, if you’re not extremely familiar with thyroid related issues, it can still be very confusing and mind blowing when you discover that a lot more of your health issues are actually a result of a poorly functioning thyroid gland (which is due to a malfunction of the pituitary gland.) There are still a lot of information on the subject I don’t know in detail, myself. Reading the information on this forum and other sites helps me a lot.

It’s so frustrating and stressful, too, because it’s not one of those illnesses that are easy to treat; finding the sweet spot to help both your pituitary and thyroid glands work optimally is like looking for a needle in a haystack - and it doesn’t help that most endocrinologists/doctors are still so ignorant or insensitive towards the topic. I know I have had thyroid issues ever since childhood but I didn’t understand what it was until it got really bad, towards my late teens/early twenties because that’s what prompted me to do my own research. I used to gave a TSH, FT4 and FT3 in the accepted ranges whenever I tested them but they were never optimal. Then, eventually, they all went outside the accepted range and I was officially diagnosed with hypothyroidism about 10 years after I was sure I had it...all because doctors never took me seriously (and most still don’t, in all honesty.) I was already self-medicating by then but I still started far later than was necessary.

It is rather amazing (in a disheartening way 😄) how a tiny little gland controls so many bodily functions and if it goes slightly out of whack then everything else goes out of whack, too, making daily life a struggle for most of us.

[Hypomadness80 in reply to LivingWithHT]

It surely is a struggle. Sometimes I read so much about it, but doesn't feel like I'm registering the infos in my head. I know I wasn't converting properly as I have seen a private doctor who knew a bit about Thyroid, but couldn't keep going to him as he was very expensive and on the other side of the country. He prescribed me nDT but it didn't make much difference. That's why I went down the route of synthetic T4 T3 combo by self medicating. I just want to go to my next appointment in my GP practice proving to them that it is working. Thank you guys!

[Hidden]

An article Congenital Thyroidism Causes Symptoms and Diagnosis can be found at nxbenefits.com

There is a difference between an absent thyroid and misplaced thyroid which may be at the side of the neck or under the tongue. The mother may be deficient in iodine which passes to the baby. If you have been hyperthyroid with Hashimotos but are now hypothyroid tests which may help are antithyroid antibodies,thyroid ultrasonography.and TG serum levels. There may be reasons why you cannot convert T3 including iodotyrosine deficiency, iodine trapping deficiency,and thyroglobulin deficiency . Glad you are better on NDT but you deserve to know why synthetic drugs are not working. Hope you can get prescriptions for NDT with cuts.

[sillysod]

Re congental hyperthyrodisum I was born in the 1980 I have Thyroid that sits at base of tounge plus I lots of other complex problems to go with it

[helvella in reply to sillysod]

You have just replied on a two year old thread.

If you want help, I suggest you post a brand-new message (click on the button Write at top right of screen).