New here, hashimotos and neuro symptoms

Hello I am new here. 44 F. Diagnosed with hashimotos 3 years back. Now since beginning of year started twitching, neuro exam in April, diagnosis benign fasciculations syndrome. Meanwhile tsh shot to 12.6 and my thyroxine was upped to 125 from 100 by my GP. For a month or so I get feeling of vibrations of fast movement at some spots mainly in soles of the feet but now also coming into hands when at rest. Today also felt kind of weird sensation in head like a row of ants crawling. Recently also got diagnosis of cubital tunnel syndrome for left hand but rest of the symptoms are scaring me. Any one has had similar symptoms or heard/ read abt it ? Could it be perimenopause? Also hands' skin went extremely dry and itchy out of blue. Depressed and anxious

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  • Sounds like LOW B12 to me. When B12 is below 500 it can be the cause of neurological symptoms. Also Low B12 can cause issues in the brain.

    The book - Could it Be B12 ? - is a must read for everyone. Sally Pacholok is the author and there is a video of her on the link below under the headings on the Menu - Films.

    b12deficiency.info/signs-an...

    Do you have any thyroid results with ranges you could post ?

    How are you taking your T4/Levo ? Away from food and drink for at least an hour or take it two hours after eating if taking it at night.

    Also how are your levels of FERRITIN - FOLATE - B12 - VITD ? ALL need to be optimal for your medication to work and for you to feel well.

  • Neuro did a blood check in April and said all was ok, I don't know if he had checked b12. My GP checks only tsh and range from the lab is 0.27-4.2 and my result in mid of July was 12.6 and now 5.4. Thanks

  • Also wanted to add. Last night it was terribly hot so I kept window slightly open. Midnight I woke up with such a violent shivering that I thought I am going to die. The room was cooler but my shivering was as if I have been put in a freezer

  • You are entitled to all copies of your bloodtest results legally. So obtain copies. Your TSH is far too high - needs to be 1 or under if you are on the correct treatment.

    Have you looked at the B12 link I posted above - only then will you realise how important B12 is. Having results that are OK is meaningless - especially to us here. You need to know the actual results - they are possibly in range - which makes them OK - but it is WHERE you are in the ranges that is important.

    Please read through my reply again as you have not answered many of the questions I asked. Could you have the tests done privately through Thyroid UK ?

  • Hi Marz

    Sorry for incomplete reply. I live in Germany. I checked my reports now and in December my B12 was checked as I had an extensive neuro check up for a suspected TIA. It was 383 then. I read in the link list of symptoms but have not watched movie yet. I had a severe vitamin D deficiency but last results showed it was 32 still low but close to normal. I am a vegetarian and have been quite sloppy with my supplements. My GP here prescribed me selenium but I had been taking other vitamins b12 and b6 as well as zinc , magnesium and calcium too but irregularly same goes for ferritin which is low and GP has given me iron supplements which I have been taking now and then. I have an appointment with her tomorrow I can ask her to run these tests of b12, ferritin and vit d again but wonder if she will agree . Thanks a lot Marz !

  • ritecharm - have just noticed your response by chance. If you want me to see your reply then click onto the Green Reply Box below the post to which you are replying :-)

    When B12 is low - which yours is - then often the HOMOCYSTEINE is raised which increases your risk of a TIA and heart problems. Please look at the website I posted at the very beginning of the thread and read up on the additional testing you need. Sorry but it is all about reading and learning.

    Also please tell me you WILL buy the book I suggested. You will then realise that you have to sort yourself out. Your B12 needs to be around 1000 and yet once supplementing the tests are meaningless ....

  • Sorry. I am new here so can't navigate properly it seems. I will surely ask my doctor for these tests but I have a concern though I was treated for suspected TIA at a university hospital yet they did not react on b12 lower than 400. How can I persuade my doctor to give me injections etc when the lab ranges are lower. do you guys also have such issues with your doctors? How do you manage ? Supplement on your own ? Thanks a lot for the help

  • Homocysteine when raised is a marker for strokes and heart issues.

    There are Guidelines for Folate and B12 Deficiency which your GP should have read.

    bcshguidelines.com/document...

    It does state at the beginning that they should go by symptoms and not the blood test. A TIA could well be a symptom.

    I live in Crete and can buy my B12 injections over the counter without a prescription and the syringes. I have them on a regular basis. So am not beholden to the UK NHS system.

    When you read the book I have suggested you will understand that Doctors are not trained in the seriousness of B12 Deficiency. Also when you watch the videos I have given you in the link above you will see the seriousness of LOW B12. It is a neurological condition and NOT a vitamin deficiency.

    Read the link I gave you in my first response and READ and WATCH. There is even a letter there that you can send to your GP. I can tell you have not read the link I gave you as you are asking questions that will be answered when you have looked the link fully.

    :-) :-)

  • Hi Marz

    As I wait for my blood test results I am educating myself on b12. I have read the link provided by you. If I understand correctly most preferable way is to inject it but again if doctors don't agree to deficiency ( as numerous case studies show there ) then what can one do. Any oral/OTC supplement that could work ?

  • Yes of course for some oral OTC supplements do work well. It would be better if you knew the cause of your B12 deficiency. Also if your Homocysteine is raised then there is a special protocol for that. Methylcobalamin B12 lozenges by Jarrow are good - but there are also B12 sprays for under the tongue and up the nose. For raised Homocysteine - you will need B12 - B complex - and another product to encourage good methylation. TCH I think it is called. Google Homocysteine and have a read - could be helpful :-) My family are off back to the UK tomorrow and am about to do a BBQ :-)

  • Thanks. My cause is my diet most likely practically vegan except my daily cappuccino.Enjoy the bbq

  • If your B12 level is low due to dietary restrictions then taking the lozenges or sprays should work well.

  • I was going to say the same as Marz - sounds just like low B12.

    Hypos often have low B12 because they have low stomach acid, which means they have difficulty absorbing nutrients.

    Doctors don't test for B12. They have no understanding of its importance - nor the terrible things that can happen if it's low. You have to ask for it to be tested. Don't be passive. Learn about your disease, find out what you need and ask for it. If you count on your doctor to just do things, you'll never get well. :)

  • If we have a thyroid problem we need a high level of B12. As you are vegetarian you are not getting enough from your diet, and admit you aren't taking your supplements regularly. The neurological symptoms that you describe do sound like low B12 to me. I had the crawling sensation on my scalp, twitching, balance problems, numbness and pins and needles. Increased anxiety and depression can also be due to low B12. Ask for your level to be tested, plus, ferritin, folate and VitD. Post your results on here for more advice, we aren't doctors but people who are living with these conditions everyday. Best wishes MariLiz

  • Thanks the symptoms you described are exactly similar to mine. I will definitely get these tests done even if I have to go to a private lab

  • It's definitely Hashimotos...I remember feelings of ants. And the occasional wasp sting feeling. I can't even put into words the crazy symptoms I was having. .do whatever you can to lower your antibodies...but if that doesn't work don't suffer like I did. My hashimotos became cancer...I wish I would have listened and had a TT a year ago...no one should suffer

  • In the early stages of hashi I had low b12..starting getting injections. But sadly...it was after I got all vitamin levels normalized that I still had pins and needles and ants. So it's not always vitamin issues. As my antibodies got higher I just got sicker...good luck

  • I was at the neurologist today. Examination of legs plus nerve conduction study normal. Blood sample taken for b12 and thyroid etc. Results on Friday. Will post to get some guidance. Thanks for your help so far

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