Lost!: Hello all. I have autoimmune thyroid... - Thyroid UK

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Sarahcol profile image
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Hello all. I have autoimmune thyroid, although never has the word Hashimotos been mentioned to me by the doctor, my antibodies were at 3000 on diagnosis 3 years ago. I also have vit d deficiency and take those daily, as well as Thyroxine 125mg. I have bouts of extreme exhaustion and fatigue, brain fog and cannot function properly, that is where I am right now. I just had a load of bloods taken and my antibodies are at 2000 again. My B12 levels are 177 so am having a course of B12 injections. But I just cant help wondering, surely something else is going on if I am deficient in two vitamins, and my antibodies are so high, apparently the norm is under 60! He is writing to an endocrinologist to find out if the high antibody level could cause my symptoms. I have never had the thyroid thing explained and am really confused as to how it all works and what or who I can ask! I did see an endo 2 years ago when I had these symptoms again, he said I was being over medicated and established my low vit d levels. Really don't know which way to turn or who to ask. How ridiculous is this? My love goes out to all you fellow sufferers. Any advice or input would be amazing x

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Sarahcol
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Clutter profile image
Clutter

Sarahcol. Dr. Hakura Hashimoto discovered the autoimmune thyroid disease which causes hypothyroidism in 1912, which is why the disease is known as Hashimoto's. Most UK doctors call it thyroidis or chronic thyroiditis.

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

There is currently no treatment for autoimmune thyroid disease (Hashimoto's). Levothyroxine is prescribed to replace the low thyroid hormone caused by autoimmune destruction of they thyroid gland. Many GPs and specialists will deny that having high antibodies causes symptoms at all, but some acknowledge it can, and most Hashi patients will know it can and does. Some endos understand that suppressing TSH and thyroid activity can reduce Hashi flares and antibodies.

It is widely thought by functional doctors, naturopaths and nutritionists that autoimmune disease starts in the gut, triggered by gliadin in Gluten and adopting 100% gluten-free diet can help reduce Hashi flares and antibodies.

chriskresser.com/the-gluten...

This link will tell you more about hypothyroidism:

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

Sarahcol profile image
Sarahcol in reply to Clutter

So would rrmoving thyrois stop the flares...as there would be no thyroid to attack? Thankyou for all the information...I really appreciate it :)

Clutter profile image
Clutter in reply to Sarahcol

Sarahcol, Not necessarily, but it will in some cases. Thyroidectomy is used to remove very enlarged or diseased thyroid glands and goiters which may be impacting on nearby organs, but not to prevent Hashi attacks. Remnant thyroid cells left in the thyroid bed after surgery and strays cells loosened by surgery into the body may be sufficient to attract continuing attacks. Follow up high dose radioactive iodine ablatement would destroy remnant cells and should stop further attacks when all thyroid activity is destroyed but has health risks so is reserved for treating thyroid cancer.

Sarahcol profile image
Sarahcol in reply to Clutter

I see. Wow it is so complicated ..please forgive my ignorance. Thank you for your information.

greygoose profile image
greygoose in reply to Sarahcol

Well, in theory it would. But that's a bit drastic, Don't you think?

Imagine you have your thyroid out on Tuesday, and on Thursday, they find a cure. Far better to just stop thyroid function by suppressing the TSH.

It's the TSH, a pituitary hormone, that tells the thyroid to work. Without it, it just shuts down.

Sarahcol profile image
Sarahcol in reply to greygoose

Thank you for yr information. I am not as clued up as some.

greygoose profile image
greygoose in reply to Sarahcol

Of course you're not. No-one is born knowing all of this stuff. We've all had to learn from scratch when we started out on this journey. But you will learn, given time. Don't worry. :)

Marz profile image
Marz

B12 deficiency is a serious condition - it is a neurological one and not just a vitamin problem. Please look at the link below when you have time - to learn as much as possible.....so glad to hear you are receiving injections. You may need them more often than three months - which is the standard NHS treatment after the loading doses. You may also need to take a good B Complex to keep all the B's in balance and to provide you with Folic Acid which works with the B12 in the body. You may also wish to research the differences between Folic Acid which is synthetic and Methylfolate - which is natural.

b12deficiency.info/signs-an...

Many symptoms of B12 deficiency are very similar to Hypo symptoms. It may be worth exploring why you have poor absorption of B12. Do you have any gut issues ? Low stomach acid ? What other medications are you taking ?

Sarahcol profile image
Sarahcol in reply to Marz

Lately Ive experience acid in my throat, looser bowels than usual. But I feel completely out of synch with everything tbh. I just worry that I now have 2 vit deficiencies and surely replacing them doesnt establish why I have them...what else is going on?I am going to view your link now. Thank you for your advice I feel so alone with this.

Marz profile image
Marz in reply to Sarahcol

It is often the simpler things that help us to feel well. Like you I have Hashimotos but was not diagnosed until I was 59 after over 40 years of illness. Joining this forum and learning so much - I have improved my health with the building blocks of health - VitD - B12 - gluten Free and so on. It's a long and bumpy road - but one worth travelling....

Deficiencies accompany Hashimotos and thyroid problems generally as you will glean from following this forum....

Sarahcol profile image
Sarahcol in reply to Marz

I am glad you have found ways to feel better...it is certainly debilitating at times. I am going to go gluten free I have decided, willing to try anything to feel better. Thanks for replying xx

greygoose profile image
greygoose in reply to Sarahcol

Sarah, vitamin deficiencies are indirectly caused by the Hashi's.

It goes like this :

Hashi's antibodies attack and destroy the thyroid gland.

The thyroid gland finds it more and more difficult to produce thyroid hormones - T4 and, to a lesser degree, T3.

Having Hashi's also makes it more difficult for you to convert the storage hormone, T4, in your liver and cells, to the active hormone, T3.

Low T3 gives you lots of symptoms, because very cell in your body needs T3 to function correctly. It also causes loss of production of stomach acid.

With low stomach acid, it is very difficult for you to digest your food correctly, and make vitamins and minerals available for absorption in the gut.

So, you find on a blood test, that you have insufficient quantities of these nutrients to keep you well. And that, by no means, that you have anything else going on. It's just the Hashi's.

How is your iron and ferritin? Are you supplementing vit D3? You might want to add in a little magnesium and zinc, because you are probably low on those, too - most of us are - and they all work together.

Doctors do not understand the importance of nutrients - hell, they Don't even understand the importance of hormones! Therefore, when we are hypo, we have to read as much as we can and learn and talk to others suffering from the same disease, if we want to be well. We cannot just sit back and rely on our doctors, I'm afraid. We often know more than they do! :)

Sarahcol profile image
Sarahcol in reply to greygoose

Im on vit d but I will add in magnesium and zinc too. First b12 shot is Tuesday.

greygoose profile image
greygoose in reply to Sarahcol

Hope it makes you feel a bit better. :)

MikeR profile image
MikeR

Hi watch these videos it will help explain a lot. Messagage me if needed.

hopeforhashimotos.com/hashi...

No advice to offer as I am new-ish here too, but a huge (and gentle) virtual hug.

Sarahcol profile image
Sarahcol in reply to

Thank you :) right backbatcha !

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