Hypothyroidism and tingling: Don't know if anyone... - Thyroid UK

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Hypothyroidism and tingling

bethhub profile image
49 Replies

Don't know if anyone can answer this. I have hypothyroidism and I'm experiencing tingling in my extremities, diarrhea and my tongue feels strange. Can hypothyroidism cause these symptoms. I currently take 75mcg synthyroid. My tsh level was 6.106.

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bethhub
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49 Replies
shaws profile image
shawsAdministrator

I would get a B12 blood test to ensure you aren't deficient. These symptoms sound to me like a B12 deficiency or pernicious anaemia, so your GP should do the appropriate tests to exclude either. B12 is a a very important pro-hormone as is Vit D. Both have to be optmum.

I think I'd ask GP to check B12, Vit D, iron, ferritin and folate at the same time as all have to be optimum.

bethhub profile image
bethhub in reply to shaws

I had some tests done. Calcium, vitamin d were ok. I had a b12 defiency awhile back, so I have been taking mega doses of vitamin b12. Blood work showed high level of b12.

mistydog profile image
mistydog in reply to bethhub

Your TSH is still too high. Ask for an increase in dose

Marz profile image
Marz in reply to bethhub

bethhub The B12 test revealed the amount of B12 in the blood. It is needed in the cells. Testing whilst supplementing produces skewed results. I would read up on MMA testing and Homocysteine - if raised it can suggest B12 deficiency at a cellular level.

Are you also taking a B complex - that keeps all the B'z in balance - especially containing Folate or Folic Acid which works with B12 in the body. Did you have the Folate tested ? Also Ferritin needs to be done.

So what was the OK result for your VitD ? Needs to be around 100 if you are in the UK.

As you are still under-treated for your thyroid I would also consider it as being a possible cause of some of your symptoms.

Do you have Hashimotos ?

bethhub profile image
bethhub in reply to Marz

Yrs, I have Hashimoto's. Vitamin d was 28

SlowDragon profile image
SlowDragonAdministrator in reply to bethhub

Are you in USA? Vitamin D is has different unit of measurement

endmemo.com/medical/unitcon...

UK minimum recommended 70nmol/L is equal to 28Ng/ml

As you have Hashimoto's are you on gluten free diet?

amymyersmd.com/2017/02/3-im...

See The Thyroid Pharmacist website for masses of info about Hashimoto's too

bethhub profile image
bethhub in reply to SlowDragon

No I'm not on a gluten diet, but maybe I should be. I need to do some research of my own. I know nothing about going gluten free.

walker2037 profile image
walker2037 in reply to bethhub

I give myself shots once a week. Way better for Mr than pills.

in reply to bethhub

Beth. If you were deficient of B12 a while back it is likely to be a reacurring problems and you will need regular top ups. A lot of people are unable to absorb B12 orally and especailly people with hypothyroidism. The B12 blood test is very unreliable and this is even acknowledged by NHS choices.

Also there is a B vitamin( not B12) that causes tingling not sure which one but if the B12 you are taking is combined with high doses fo other B vits I would give taking them a break for a while.

SlowDragon profile image
SlowDragonAdministrator

Post the actual figures for vitamin D, folate, ferritin and B12.

Vitamin D needs to be above 70nmol/L

You might consider an active B12 test. Difficult on NHS, but available via Medichecks or Blue Horizon

Vitamin B complex may help, as we can be short of other B's too and it's recommended if supplementing B12 anyway

Interesting article about interaction of vitamins D and B

drgominak.com/sleep/vitamin...

Do you also have FT4 & fT3 results. TSH is too high, it needs to be in lower part of the range. Why has GP not increased Levo dose? How much do you take at moment

Have you had thyroid antibodies tested? Do you know you have Hashimoto's (autoimmune disease)

bethhub profile image
bethhub in reply to SlowDragon

Inhale Hashimoto's. I'm taking synthyroid 75mcg. No I haven't had antibodies checked. Thank you everyone for all of the advice and info. I think I need to become more proactive when it comes to my health. I didn't know I should be taking a b complex.

bethhub profile image
bethhub in reply to bethhub

Sorry I don't know how I typed inhale Hashimotos. I meant.. Yes I have Hashimoto's.

helbell profile image
helbell in reply to SlowDragon

Great article. Thanks

bethhub profile image
bethhub in reply to SlowDragon

Vitamin d 28.6 pg/ml I'm assuming that's in the normal range.

helbell profile image
helbell

Hi Bethhub,

Yes, TSH too high so that definitely needs checking. Low thyroid hormone can be associated with those symptoms (it was with me) and aggravate B12 absorption among the other vits and mins. But this disease takes us all a bit differently. You've already shown B12 def which raises the odds but the problem with oral replacement is that it can show high serum levels. I have this issue and unless I stop my B12 for several months I won't get a true reading to indicate deficiency or PA. You need a recent thyroid panel blood test and post your readings for admin to comment. At the very least TSH, Free T4 and Free T3, including the lab ranges, to get a better picture. The PA B12 deficiency group on here is very helpful too. If your doc will only take TSH, blue horizon and medichecks are very reasonable for home fingerprick tests. Best forty quid you can spend.

brighter84 profile image
brighter84 in reply to helbell

Sorry for jumping in but are you saying that low thyroid can affect your B12 absorption? I thought it was the other way around. Or is it both ways?

helbell profile image
helbell in reply to brighter84

Yes, both ways. Gut health can be hugely compromised in hypothyroid sufferers...add on inflammatory disorders driven by autoimmune issues, especially UAT aggravating poor absorption of nutrients including poor conversion of B12. Add in the possibility of PA piggybacking on UAT, or gut issues triggering either...it's minefield. If it were me I would get the simplest things done first while following up the rest. At that TSH my guts would be shot. Indeed, they were and low iron, low D, low folate, high cholesterol and basically the usual culprits were present until I received replacement. Unfortunately I was already taking B12 so those tests were useless.

Study on low B 12 disrupting thyroid activity ncbi.nlm.nih.gov/pubmed/186...

I'm no expert but imagine - saying the obvious - theres a huge difference between treating sluggish thyroid caused by low B12 in otherwise normal thyroid/autoimmune-free subjects and B12 def as a co autoimmunity disorder, or hashimoto's and or hypothyroidism driven gut issues. As i mainly look at issues in relation to a majority of hypothyroidism caused by autoimmune I'm not up on hypothyroidism caused by non autoimmune. Well, not permanent hypothyroidism. Glad you asked. I'll look deeper.

brighter84 profile image
brighter84 in reply to helbell

You know, I'm impressed how much many of us learn and can research considering the brain fog some of us get when hypo haha. It took me several times to read what you wrote to understand it. You're right, it really is a minefield. I wish I had known all of this 20 years ago.

helbell profile image
helbell in reply to brighter84

Perhaps I'm just a huge coward which drove me to it. I researched for two years solid under several miss diagnoses...docs thought I was mad, I thought I was dying...then I thought perhaps I am mad. It's a wicked game we go through. X

LAHs profile image
LAHs in reply to helbell

Me too! Every word that you wrote.

helbell profile image
helbell in reply to brighter84

Oh..and I had to edit it several times ;)

brighter84 profile image
brighter84 in reply to helbell

I too am a researcher. I vaguely remember seeing a central place saved for documents with links for medical research papers etc but maybe that was on one of the Facebook groups. It would be handy to have. Once I've fixed myself by getting my levels into balance myself, I'll be going to my GP, the private doctor I was seeing and the endos and trying to give them a lesson! How will things change otherwise??

helbell profile image
helbell in reply to brighter84

I know. I confess to no longer bothering my GP re thyroid....cant handle the ongoing upset. He's not negligent by any means, just adamantly believes in the TSH orthodoxy....and the madness of sane women continually complaining about hidden ailments. What frightens me is suspecting that pressured medics hide behind legislation, cover their behinds with the lab tests' for a speedy-yet-backed-up diagnosis. Surprising how much authority labs have in treament, too. I also feel woman patients, usually over a certain age, are hung with labels to hide behind.. sexist ageist...uh, dont want to go there today....

Check out the Thyroid UK home page. Lots of useful links and info there.

brighter84 profile image
brighter84 in reply to helbell

Then we write a book or a booklet based on people's actual experiences of self medicating and achieving wellness. Give it to every GP and endo we come across and hope the damn message sinks in! 😂

helbell profile image
helbell in reply to brighter84

Like, like it.....

helbell profile image
helbell in reply to brighter84

There are a lot of publications out there. My wish is that medics would follow these forums, especially this one for a it's broad platform, and overwhelming anecdotal evidence. Also the host of experienced and knowledgeable individuals that contribute.

Anyway..gotta stop, sabotaging the thread.

LAHs profile image
LAHs in reply to brighter84

Dead right brighter, I just gave my GP Barbara Louheed's"Tired Thyroid". He looked at me funny and I told him that if he read it his life would be a lot easier since he would know why his thyroid impaired patients never got any better - because the stupid End we have at our hospital only doses on TSH and T4 - and so guarantees under medication together with all of the problems that generates which s/he perpetuates with the low dose - and which my (lovely) GP then is supposed to fix!

He is such a sweety. I told him how boosting my T3 fixed my arthritis and he looked as if a large piece of a jigsaw puzzle just fell into place. I could just see in his eyes, " Look up T3!"

bethhub profile image
bethhub in reply to helbell

Yes, she's only doing tsh. Never heard of blue horizon or medicheck.. I will check into that immediately.

SlowDragon profile image
SlowDragonAdministrator in reply to helbell

I think bethhub is not in Uk

So Medichecks or Blue Horizon not available

helbell profile image
helbell in reply to SlowDragon

Ah

LAHs profile image
LAHs in reply to SlowDragon

The Blue Horizon equivalent in the US is True Health Labs (THLs). I use THLs, they are great, without them I would have stayed very sick. They have a wide range of tests, I do the complete thyroid panel.

bethhub profile image
bethhub in reply to SlowDragon

I live in th United States

thyroidquest profile image
thyroidquest

Are you supplementing with anything else? Excessive ferritin can cause those symptoms..some people aren't able to excrete it..its worth getting a thorough set of bloods done....

bethhub profile image
bethhub in reply to thyroidquest

I take a powered supplement.

helbell profile image
helbell

Ah..bluedragon nailed it.

jacrjacr profile image
jacrjacr

your tsh is way too high and all kinds of symptoms but what were the ranges and levels of ft3 ft4 which is REALLY IMPORTANT....YOU NEED A MEDICATION INCREASE TO BRING TSH BETWEEN 1-2

bethhub profile image
bethhub in reply to jacrjacr

I have an appointment on the 21 of July. I will post my results.

LAHs profile image
LAHs

Fast immediate test for low iron: pull down your lower eyelid. What color is it? If it is white or very pale pink you are lacking in iron - and therefore ferritin, which is essential to thyroid processes. So start taking an iron supplement or start eating a lot of red meat, spinach, eggs esp. yokes and liver if you can stomach it. If your inner eyelid is red then you are OK for iron and probably ferritin - but you might want a test anyway just out of curiosity.

PamDerouen profile image
PamDerouen

Need to increase your dose.

MiniMum97 profile image
MiniMum97

I was getting symptoms of tingling and numbness in extremities, mouth, face and tongue before I was diagnosed. These have subsided now I am on medication and my levels are improving.

bethhub profile image
bethhub in reply to MiniMum97

Wow... my Dr says that tingling is not a hashimotos or hypothyroidism symptom. The tingling is driving me insane. I'm going to keep taking my medicine. My Dr is going to check my tsh levels again. Hopefully will figure this out and get me on the right dose and all of these terrible symptoms will go away.

Jemma2013 profile image
Jemma2013 in reply to bethhub

I had that as well. My doc impatiently said my T4 was within range, and it would have to be really low to give tingling symptoms. The next doc I saw has put me on Gabapentin. I think it helps a bit - though I forget how it was before I took it now! But another thing I get is easily broken blood vessels in my fingers, and permanent bruising across top of the foot where the toes start, and sides of ankles - as well as joint pain, tiredness etc.. Rheumatologist has given me tentative diagnosis of psoriatic arthritis, but I think it's all down to long-term poor thyroid function (I had TPO antibodies >1000 when they were tested, but TSH and T4 remain 'within range').

bethhub profile image
bethhub in reply to Jemma2013

I'm sorry you have all these symptoms, but it does help knowing I'm not alone. I know my tsh is 3.1 but I know nothing about my t4 or t3. I get pain at the base of my thumbs alot now. Along with weakness upper arms and thighs. What really worries me is above my upper lip is swollen in morning and then goes away aliitle through out the day. I also had swollen arms and chest a few times.

Jemma2013 profile image
Jemma2013 in reply to bethhub

Oh my word - some of those swelling symptoms sound like an allergy to me - the doc must surely sit up at swollen chest? General weakness is also something I have, and pain at base of thumbs. They won't do anything on NHS until TSH goes above 4.5 - mine was 4.1 when they first tested it, but they gave me nothing. I'd go back and pester the GP if I were you.

jacrjacr profile image
jacrjacr

i think with any thyroid issues....common is low or low normal in d3, b12, ferritin, in fact I have to supplement daily and I was shocked these things go hand in hand with thyroid patients to watch out for.....a swollen or scalloped edge tongue can be iron or b12 low, a swollen tongue can also be low thyroid, lower inner eye lids pink and not red sign of low iron, tingling is a sign of B VITAMINS INCLUDING B12 BEING LOW AND EFFECTING THE NERVES, also high sugar will make you tingle too...if a dr does test...get results bec it is also common for drs to say you are fine bec you are in normal range yet your are low normal and they don't know any better.....

bethhub profile image
bethhub

I didn't realize low thyroid could cause such a wide variety of symptoms. I was told I had a b12 deficiency awhile back, so I've been supplementing. When they last checked my b12 was really high. Because of the supplements testing for b12 deficiency wouldn't be accurate. My tongue is swollen in the morning.

Stourie profile image
Stourie in reply to bethhub

A swollen tongue is another symptom of under treated thyroid. You need more thyroid meds.

Jo xx

Feelshitnfat profile image
Feelshitnfat

I have pins and needles all the time in my fingers. Have it right now.

lorilou107 profile image
lorilou107 in reply to Feelshitnfat

I have been feeling more and more unwell over the last 4-5 months. I started putting on weight quickly, got even more constipated even though I have been taken off oral opioids since having a morphine pump put in. I started getting pins and needles and tingling in my fingers on both hands and numbness. I started falling asleep in the afternoon and early evening. I went to my GP with the pins and needles and a list of other symptoms, memory loss, trouble finding words, slow thinking, feeling cold and teeth chattering and then boiling hot. and my father is hypothyroid. He did basic thyroid function tests which came back normal!! I then noticed a large lump on my neck and have been referred to an endocrinologist. He said it was a goitre and has done a biopsy which I am waiting for the results of on Tuesday. The goitre has got bigger and I can feel it when I swallow and my voice is going croaky.

I am terrified that he will say the results are normal again and won't do anything. I also have nails that are breaking and hair falling out when I comb it. Consultant said pins and needles weren't related to hypothyroidism but I have read on several sites that they can be a symptom. I can't seem to stop crying every time something goes wrong and my emotions are going haywire.

Surely there is something wrong, I feel like my body is not working properly and I am wading through treacle.

How difficult is it to get diagnosed with hypothyroidism, do the TS 3. and TS4 tests show enough to get treatment and will they remove the goitre

I also suffer from chronic back pain and have a spinal cord stimulator and a morphine pump. I've also had a knee replacement.

Any advice for a newbie?

Thanks Lori

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