Numb hands & feet: Hi all, Does anybody have... - Thyroid UK

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Numb hands & feet

missymystique profile image
21 Replies

Hi all,

Does anybody have tingling/numb hands and feet? I had it one time last month and lasted a couple of days, then it stopped but only at nights my feet and left hand always fall asleep, they are always numb when I wake up.

Can this be related to hypothyroidism?

I'm on levothyroxine 50, my TSH is around 3.

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missymystique
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21 Replies
Marz profile image
Marz

Think you may need a dose increase as most people here feel better with a TSH of 1 or under. Also have you had your B12 checked - it needs to be around the TOP of the range when Hypo.... Your dose is very low. How long have you been on that dose ? Always keep copies of your blood tests with ranges....

missymystique profile image
missymystique in reply to Marz

Thanks Marz! Yes b12 has been checked, it was 226 , normal range 160-700 so doctor said normal, but I just started taking 1000mcg tablets, it's been two weeks it hasn't helped.

I have been on levo 50 for 4 months, once they checked my levels it was 3.7 and the doctor said it's good no need to increase.

Marz profile image
Marz in reply to missymystique

Wrong and WRONG again ! Sorry ! Anything under 500 for B12 will cause neurological symptoms for the patient. There are also Guidelines which your GP should have read - saying to treat by symptoms presenting in the clinic. In your case tingling and numbness.

b12deficiency.info/signs-an...

Please read the above link to learn about B12. There are Films on the left of the page - videos you can watch - yikes ! You will also read that in Japan the range STARTS at 500. You will also learn from the above site that only around 20% of your serum B12 result ends up in the cells where it is needed. So your result is VERY low.

bcshguidelines.com/document...

In the above link you will see my comment confirmed :-)

I would suggest you take 5000mcg of Jarrow Methylcobalamin Chewable Tablets - hold them under the tongue to avoid gut issues. Once on treatment the tests are irrelevant - unless you stop for a week or two. you can also buy good B12 nasal sprays. You also need a GOOD B Complex to keep all the B's in balance to give you adequate Folic Acid or Methyfolate. It will take many weeks for you to sense an improvement.

Your TSH is too high - and you should feel better when it is 1 or under. 50 of T4 is far too low a dose - it is a starter dose - so it needs to be increased !

Am afraid your GP needs to go back to school :-)

Have you had other tests - Ferritin - Folate - Iron - VitD ? Also thyroid anti-bodies - Anti-TPO and Anti-Tg..... ?

missymystique profile image
missymystique in reply to Marz

I agree! they are useless aren't they? I begged for a treatment with TSH 7, I told them I want to have a baby this way they put me on levo, otherwise they were not going to!

Ferritin is low 26, vitamin D is low 35, antibodies positive..

I think all hypothyroid people have the same complaints b12, vit3, iron..

I want to increase my own dosage for levo but I'm afraid I'm going to run out of meds.

Thanks for the links sooo much! Will check them now.

Marz profile image
Marz in reply to missymystique

With a Ferritin that LOW - your body will not be able to utilise that small amount of T4 and convert it into the Active T3. Ferritin needs to be around 80/90....

You need to also take 5000 IU's of VitD to raise your levels. Am assuming the measurement was in nmol/L. The link below will be in ng/L - American - but it will show you how to dose according to your results. So divide your result by 2.5 = 14 - so around 5000 seems about right :-)

grassrootshealth.net

There is website called Hypothyroidmom - which I seem to remember has articles/blogs about levels required to achieve pregnancy. Usual higher levels required of Ft4 and FT3 I believe.

if you type Treatment for Low Ferritin - into the Search Box on the green bar above - earlier relevant posts will appear. You need to treat that LOW Ferritin sooner rather than later....

Jackie profile image
Jackie

Hi This can be diabetes, autoimmune and hormonal. I would ask for a blood test for it, just to be sure.

Jackie

missymystique profile image
missymystique in reply to Jackie

Thanks Jackie. I know, I had blood tests for diabetes several times. I don't have it. What could be hormonal/autoimmune reasons?

Jackie profile image
Jackie in reply to missymystique

Hi Diabetes is hormonal and autoimmune. Blood test needs to be HB1Ac. You could be border line. If not just had one I would ask for another one.

Jackie

milkwoman profile image
milkwoman

I used to get this ALL the time. At times, I would be woken up in the middle of the night due to sharp pains in my forearms because my hands and forearms had gone numb. No one could ever give me a reason for it and I mentioned it to my GP and several specialists.

While I never determined a cause, I can tell you that since being on thyroid meds - levo and slow-release T3 (I'm Hypo) - as well as Plaquenil (for Lupus and Sjogrens), I rarely experience any numbness/tingling anymore.

I also supplement with Methylfolate, methylcolbalamin, D3, iron and ferritin. No idea if those are what has made a difference.

missymystique profile image
missymystique in reply to milkwoman

Great to hear that you don't experience it anymore! do you think it could be lupus related more than hypothyroidism? because I also have positive ANA and that makes me question if this is another auto immune condition related..

milkwoman profile image
milkwoman in reply to missymystique

I really wish I knew. I was diagnosed with hypo first and lupus about 1 month later. If I had to guess, I think it is thyroid related since I believe my sympyoms go away when thyroid hormones are in balance. I am currently in a period of thyroid meds dosage adjustment (upping my slow-release T3) and I do recall waking up in the morning one day last week with numb hands (this is prior to making the dosage change). I hadn't had that happen in quite awhile.

I hope you find some answers. Are you seeing a rheumatologist to investigate which auto-antibody yielded the positive ANA result?

missymystique profile image
missymystique in reply to milkwoman

They did the test but the panel is all negative somehow, ANA is slightly positive. Considering I have raynaud's I'm suspicious about either lupus or scleroderma since I have some skin symptoms. I just don't know which of those diseases cause numb hands and my night sweats.

milkwoman profile image
milkwoman in reply to missymystique

Interesting. Was the panel all-inclusive? Also, isn't the Raynaud's the cause of your numb hands and feet? That is listed as a symptom. Are you on medication for the Raynauds? Were you ever tested for the antibodies for autoimmune thyroiditis?

The comment below about Vit B12 levels is very interesting. Mine is off the charts (>1500), which can indicate a mal-absorption issue. I used to take cyanocobalamin (which did nothing) but now take methylcobalamin and feel more energetic. I take the methylcobalamin along with methylfolate. Now that I recall, a few weeks back I had run out of my methycobalamin and was taking some leftover cyanocobalamin so that COULD account for the instance of numb hands/forearms I recently had (I've been back on the methylcobalamin for about 2 weeks now).

What form of B12 are you taking? I like the "Fast Melt" 5mg Methylcobalamin from Source Naturals.

missymystique profile image
missymystique in reply to milkwoman

I take a tablet b12 everyday, it's called benexol, it's 1000 mcg. Can't wait to see the improvement there.

Yes i have positive thyroid antibodies. For Ana, it was 'weak positive' and the full panel was checked all sub types negative. I don't understand how this can be. I've had raynauds 5 times in my life so it's not bothering too much for now, not taking any medicine. Yes I heard tingling can be due to Raynauds but it doesn't happen during a Raynaud's attack so I think it's either poor circulation or nerve issue

Chancery profile image
Chancery

Hi Missy, these sound like neurological damage from a low B12. I see the figure you've quoted here and it is NOT normal; it is far too low, especially as you are experiencing symptoms. Neurological damage can be permanent and lead to far worse damage so you really shouldn't ignore this. Unfortunately, taking oral tablets won't bring this up to speed fast enough; you should really be on B12 injections. If you have any gut issues, like low stomach acid, then this can cause problems with absorption so taking tablets doesn't help.

If you can't find any other reason for this problem I would consider going back to my doc and asking for a trial period of B12 injections, just to see if it improves your symptoms. B12 is cheap and does no harm, even in excess, so he has no cause to refuse. B12 deficiency ultimately leads to paralysis and other conditions, such as the one I have, trigeminal neuralgia, and even dementia. You really don't want to mess with it!

missymystique profile image
missymystique in reply to Chancery

thanks so much!! I know but all doctors I've seen are telling me this is normal figures. And I asked for injections but they won't give it to me so I started taking 1000mcg b12 everyday, I don' know if this is enough...

Chancery profile image
Chancery in reply to missymystique

Well, Missy, the only thing I can suggest is to do what I did. I had much higher figures than you for my B12 (384) so I compiled a dossier of documents, along with an argument laying out why I felt I needed the treatment. The important things to point out are that countries like Japan have a lower limit of 500, way higher than ours, and you can see how low your figure would be to the Japanese. They'd think you were sick and in desperate need of treatment!

You need to lay out all your symptoms, particularly ones that could ONLY be B12 deficiency, if you have any, or that are otherwise inexplicable. That way they can't fob you off that your symptoms are "too general" or that they might "belong to anything". Lastly, you need to show all the data proving that B12 is highly safe, and you cannot overdose on it or do damage. Also emphasise you only want a trial, lay out what you'd like the trial to be, and say that once you've had your trial you won't bring it up again if it doesn't improve your symptoms. Tell them how much awful damage it will do if they are wrong and you DON'T do it - guilt trip them! You can also emphasise how cheap it is and if you are on drugs currently and this might help get you off them, emphasise how much cheaper B12 is than your drugs, and how much money the NHS would save, plus you'd be free from nasty side effects. Bombard them, in short. You have to be a salesman and sell them on the idea!

There are many, many papers and facts from books you can present. As long as you give a good argument in your letter they will have a hard time refusing you. You just have to be assertive and persistent.

Failing all that, you can inject yourself. LOTS of people do that. And failing THAT, you can try sublingual sprays and drops. Those are more effective than tablets as they bypass the gut. Hope you get something sorted out. X

Hi Missy, I had tingling numb feet and fingers for about 2 years. It started to improve once I started Levothyroxine. It did go away altogether when my TSH was around 1.5, but it has started to come back. My last TSH was 4.5. I've increased my dose of Levo and expect the tingling will go away again.

missymystique profile image
missymystique in reply to

thank you! my tsh goes between 2-3 now maybe I should increase it. did you have it at nights as well?

It always seems worse at night, but I have it during the day too.

missymystique profile image
missymystique

mine was a bit strange it started as itching in whole body, changed to tingling and now I only have numbness at nights

i had the itchiness a few times in the past years so maybe it's b12 deficiency I'm thinking

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