Neuro issues and Thyroglobulin antibodies - Thyroid UK

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Neuro issues and Thyroglobulin antibodies

ritecharm profile image
17 Replies

I posted few months back my neuropathy issues. I also have benign fasciculations syndrome. What's troubling me is carpal and cubital tunnel issues in both hands. NCS studies are not that bad could be called borderline and neuro has put me on physiotherapy but my feet tingle and vibrate too and there no neuropathy has been found. I am on t4/t3 combo pill of 100 micro gram t4 and 20 mcg t3. My latest results are (ranges in brackets)

Ft4 1.4 (0.93-1.7)

Ft3 2.9 (2.6-5.1)

Tsh 0.56 ( no range on my report)

Could I get neuropathy issues with these values.? I get brain fog, twitching and some times awful muscular pain and vibrations, as advised by some people here I started b12 sublingual 1000 mcg everyday . What more can I do. Doctor also tested my thyroglobulin antibodies and they were off scale. What do these signify . Thanks a lot for help. I cried today in despair as I am also facing bladder issues. Nothing too strong but sum of all is overwhelming, I don't live in Uk but in Germany, thanks

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ritecharm
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greygoose profile image
greygoose

Your FT3 is much too low for you to be healthy. And, you don't appear to convert very well. An increase in levo might help a little, but what you really need is some T3 added in.

The high antibodies mean you have Hashimoto's Thyroiditis. Hashi's is an autoimmune problem, where the antibodies slowly destroy the thyroid gland. There is no cure, nor will your doctor offer you treatment. But, there are things you can do for yourself. You can try lowering the antibodies by taking selenium, and by adopting a 100% gluten-free diet. But, you do need your TSH suppressed. Taking T3 will do that. So, that's really what you need to try for. :)

ritecharm profile image
ritecharm in reply togreygoose

Hi yes I have Hashi since 2013 but always doctors did TPO antibodies these thyroglobulin are new. I do take 20 mcg of t3 since a month almost. Was taking 10 since December

greygoose profile image
greygoose in reply toritecharm

Well, it just means the same thing : you have Hashi's.

So, it would seem, you are a very bad converter, and 20 mcg T3 isn't enough. But, did you just jump from 10 to 20 in one go? Could be that you increased too fast.

Are you taking a B complex with your B12? You need to do that, to keep the Bs balanced. Is it methylcobalamin you're taking? Or cyanocobalamin?

ritecharm profile image
ritecharm in reply togreygoose

I take cyanocobalmin

greygoose profile image
greygoose in reply toritecharm

Well, that's why you still have problems with neuropathy. You can't absorb cyanocobalamin, so it's all been wasted effort, I'm afraid. What you need is methylcobalamin.

Marz profile image
Marz

Did you have B12 tested before supplementing ? Sounds as if it is very low and the 1000mcg may not be enough. Also B12 works with Folate /Folic Acid in the body so a GOOD B Complex is also needed. Ferritin - Folate & VitD also need testing ...

How do you take your thyroid meds ? and do you take any other medication ?

A B12 result below 500 can become a neurological issue.

I am not a Medic but like you I have Hashimotos and a B12 issue.

ritecharm profile image
ritecharm in reply toMarz

Yes it was done few months back and it was 476. Neuro Prof said it's fine but I did some own research including here and concluded that it's low so I started supplementing it although I have been doing it regularly for a month or two. But now since I take supplements tests will show higher values anyway. Vit D I have been taking regularly as was diagnosed too low few years back. Yesterday I started a nerve supplement called Keltican recommended by pharmacy . I have Hashi since more than three years.

greygoose profile image
greygoose in reply toritecharm

You do know that Keltican is a homeopathic remedy, don't you? I'm not sure how effective it's going to be. Always be wary of things recommended by pharmacies. They are a business, you know.

How is your ferritin?

ritecharm profile image
ritecharm in reply togreygoose

Oh i did not know it. I went to get a vitamin combination for nerves and was prescribed it so took it . My ferritin is 47.5

greygoose profile image
greygoose in reply toritecharm

Your ferritin is too low.

Never take a vitamin combination for anything, it's a waste of money. Unless it's a B complex, of course. For other vitamins and minerals, it's far better to get tested and take the individual vitamins that you need. Nothing is good in excess.

The Bs are the nerve vitamins, so get some sublingual methylcobalamin, and a B complex with methylfolate. ;)

Marz profile image
Marz in reply toritecharm

The range starts at 500 in Japan for B12 :-) Only around 20% of your result will reach the cells where B12 is needed. Not in the blood ! When Hypo - higher levels nearer the top of the range are required as B12 is involved in many functions in the body including the thyroid - so for us higher levels are advantageous. Don't forget that B12 works with Folate in the body so a GOOD B complex would help to keep the B's in balance and provide Folate or folic Acid. Other B's work on the brain and neuro symptoms too.

How much VitD are you taking ? Around 4/5000 IU's is considered a reasonable winter dose. Docs often prescribe too low .... Also you will need to take VitK2 MK7 with the D3 and magnesium.

ritecharm profile image
ritecharm in reply toMarz

Doctor asked me to take 20000 IU every other week when I was diagnosed. But I take in every week . Is there any vitamin combination that supplies all these Vitamins and minerals

Marz profile image
Marz in reply toritecharm

My understanding is that taking a multi-vitamin or mineral can cause you to overdose on some things and under dose on others. It is better to find out what will help you the most - introduce each one slowly ....

jamesal0 profile image
jamesal0

Hi ritecharm. I was exactly like you. As others have said you are not converting T4 very well or at all. It then builds up in your system and gives you these nerve problems. If you stop taking T4 for 2-3 days you will feel much better, but you cant do it for long otherwise you do organ damage. 18 months ago I changed to NDT and now self medicate it. While I still get the tingles in the hands/feet if I take too much NDT. 95% of my pre NDT symptoms have disappeared. I figure I mostly live on the T3 in the NDT because I feel really bad within 2 hours if I miss a dose (battery gone flat). I am 100% gluten, sugar free, take 1-1.5 grains x 3 perday, 1ml of Testosterone perday, B12 injection every 2 months. This combo helps me as a 51 year old male to; keep the weight off, carry a little joint protective muscle, no brain fog, and be able to take sufficient quantities of NDT to return a just about ok TSH (4.4). Pre Testosterone I could barely take .5 grain per day without feeling like I had a hangover.

James

ritecharm profile image
ritecharm in reply tojamesal0

Hi. I am on combo pill so can't leave out t4. Will ask doctor though about NDT. Were your nerve problems also picked up in nerve conduction test. Some days I have terrible body aches. I am female 44 years

jamesal0 profile image
jamesal0

Hi ritecharm. My GP was worried I might have MS and refered me to a Neurologist. Where I passed nerve conduction tests with flying colours. The Neuo laughed me out of his surgery and told me I was a hypochondriact and it was all in my head .

Good luck with GP and NDT - they dont like the stuff. Mine tolerates me if I can keep my TSH below 5, it's an ongoing struggle. But I feel great most of the time.

Also do heaps of exercise - anything you can manage for 1 hour perday.

J

ritecharm profile image
ritecharm

Hi but my NCV was not ok. It showed conduction issues but doctor said no MS

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