strange occurrence : Yesterday I woke up feeling... - Thyroid UK

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strange occurrence

Sweetmango85 profile image
28 Replies

Yesterday I woke up feeling a little tired. Went to the washroom picked up my right hand to wipe and it was completely numb. I shook it and it was falling all over the place. I got up and collapsed nothing was working. I shouted for my husband to call 911. They came and assessed me for a stroke. Ruled that out. I eventually went to the hospital where blood and ct scan were run. Everything came back normal but I’m still feeling numbness in my arm and through out my body. Could this be a symptom of Graves’ disease? I was in a thyroid storm in 2021. My body felt out of control. I’m currently feeling anxious and restless. I’m frequently using the washroom and I haven’t been able to eat. Has anyone ever experienced anything like this? What next steps would you take? My thyroid levels are in range as I take my medicine.

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Sweetmango85 profile image
Sweetmango85
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28 Replies
PurpleNails profile image
PurpleNailsAdministrator

Numbness can be a thyroid symptom, as much under active as over active. 

Low appetite & anxiety are hypo symptoms.  

Are you currently on Methimazole / Tapazole? What dose?  Do you still take propranolol? 

What are your exact results & ranges for TSH, FT4, FT3.

Thyroid antibodies TPO & TGab.  TSI & TRab are Graves positive antibodies.

Very important to test folate, ferritin, B12 & vitamin D.

Sweetmango85 profile image
Sweetmango85 in reply toPurpleNails

There seems to always be something new to learn about thyroid disease. Currently I’m only taking Tapazol 5mg 5 days a week I don’t have my exact numbers.

Jazzw profile image
Jazzw

How very scary for you. Having ruled out stroke, did they say anything else? Hemiplegic migraine can do that sort of thing. Alternatively there’s perhaps a spine issue.

It sounds like some more tests need doing.

Sweetmango85 profile image
Sweetmango85 in reply toJazzw

More tests have been ordered by my GP.

SlowDragon profile image
SlowDragonAdministrator

carpel tunnel extremely common when hypothyroid

Low B12, folate, vitamin D or ferritin

Get copies of all test results and ranges done

pussycatwillow profile image
pussycatwillow

Do you suffer from migraine? I had something similar many years ago. It was very frightening. Hospital diagnosed as hémiplégic migraine. I had been getting one sided headaches on and off and was told these were migraine headaches.

FearFracture profile image
FearFracture in reply topussycatwillow

Prior to quitting gluten, I used to have frequent headaches and migraines a couple of times a year. The migraines meant a day in bed and throwing up. I have a prescription for promethegan 25mg suppositories and I keep a few on hand ALWAYS because it’s the only thing that can stop the vomiting once it starts.

To anyone with migraines and or thyroid issues, I highly recommend going gluten free. I didn’t realize until after I stopped eating gluten for a while that I wasn’t having as many headaches and migraines.

marigold22 profile image
marigold22

I experienced the same as you when I was very undermedicated for hypo. It happened twice very badly, then a few times in a milder way. Extremely scary. I haven't had it back again since being on my higher dose. It could well have been low vitamins and/or minerals. Not sure

pennyannie profile image
pennyannie

Hey there again ;

looking back i see I replied to you some two years ago now.

Did you register on the Elaine Moore Graves Disease forum which is Stateside as I would imagine you may find fellow Canadians there and hopefully be able to link in with a more local support network team ?

Not suggesting of course that you can't have a foot on each sides of the pond :

We do now have a paper that I'm not sure you are aware of ;

pubmed.ncbi.nlm.nih.gov/33860431

Your dose of the anti thyroid drug is now low and hopefully you are over the worst of this phase of Graves - all this AT drug does is block your own daily thyroid hormone production while we wait for your immune system to calm down.

Then your T3 and T4 levels should be in the range and without any medication, your Graves antibodies all but disappeared and with you able to come off the AT medication.

So it's a bit like being put into a holding pattern, like an aeroplane, waiting to land.

Your own natural metabolism has been blocked to some extent by the AT drug and when metabolism isn't running exactly right for the individual - either too fast as in hyperthyroidism - or too slow as in hypothyroidism - it is extremely difficult for the body to extract it's key nutrients through food no matter how well and clean you eat.

I think i would be wise to arrange a full thyroid panel to include your TSH, Free T3 and Free T4 and your core strength values of ferritin, folate, B12 and vitamin D as without a solid and strong core strength your health issues are further compromised.

Sweetmango85 profile image
Sweetmango85 in reply topennyannie

Hi there!

We did connect a few years back. Hope you’re well. I tried to use the Elaine Moore forum but it wasn’t very user friendly. And I find this site a lot easier to use.

A full panel of my thyroid was run at the hospital though I don’t have a physical copy, I was informed that it’s in the normal range.

pennyannie profile image
pennyannie in reply toSweetmango85

" Normal " says nothing - you need a copy of the results and ranges :

The ' normal size shoe size for a woman is a UK size 5 - range goes 3 - 8 :

though some 5's a smaller than others, or narrower, or wider than others and you may need to go up or down a size to get a good fit -

Plus the fact I'm size 9 - so where does that leave me ??

We are all different and quite where your T3 and T4 need to sit within the range to be well is very different to being in the range somewhere and classed as ' normal ' :

Same with vitamins and minerals and some ranges are so wide it's simply highlights the stupidity of some ranges - plus the fact these ranges are for so called healthy people not people unwell and needing addition support for their bodies.

Sorry about Elaine's forum - I never really bothered as being in the UK the time lag and I presumed the treatments available different anyway.

You're welcome on here - !!

Sweetmango85 profile image
Sweetmango85 in reply topennyannie

I understand and what your saying makes sense. I will look into getting a copy of my results.

pennyannie profile image
pennyannie in reply toSweetmango85

Good - I was scared you might have suggested I have my toes cut off or went in for shrink wrapping -

For around 10 years it was the boy's shoe department and blazer - but thankfully some things have improved for the consumer !!

FancyPants54 profile image
FancyPants54 in reply topennyannie

But still not that great. I still go into a UK shoe shop and expect the answer to my question "Do you have this in a size 8?" will meet the answer "no". But it's better than when I was at school and we had to get a lift to a different town to find a shoe shop that had 8's and then it was a case of have whichever 8 they had in stock. Thanks to hypo, for the past 2 or 3 years I've had to wear a 9 as my feet swelled up so much. Thankfully that has subsided a bit this year and I can get back into my size 8's.

I don't know about you, but I hoard my shoes and boots. I never get rid of a pair until they fall apart as I don't know when I might next be able to get some more.

pennyannie profile image
pennyannie in reply toFancyPants54

I guess it all depends what you are looking for - I never really progressed from the basic knickers though well aware fancier pants were, eventually, available and for shoes, now, pretty much limited to Clarks - I do remember having to travel to Sackville Street in London and having to buy Tall Girl Shoes and it was this one or nothing and when a child you simply want to fit in and wear what everybody else wears.

There is Long Tall Sally - I think Crispins is still going and at the other end of the market and some chains have a token selection and guess the shopping channels have caught on - but we a minority market and if you get there first it will be out of stock when i get there - so be it.

FancyPants54 profile image
FancyPants54 in reply topennyannie

It was a Long Tall Sally shop we had to get my school shoes from! You are so right, I just wanted to fit in and couldn't.

I find Clarks shoes on the small side, so rarely can I have an 8 from them, needs to be 8.5 and that's less likely to be in stock. M&S have them if you get to new season stock fast enough. These days I can only wear flats due to the horrible painful stinging numbness in my feet, so I will just wear what I can find until they fall apart.

At least we have access to online shoes now. Joseph Stiebel do good ankle boots up to a 9. I live in those.

pennyannie profile image
pennyannie in reply toFancyPants54

Ah, thanks - I'll take a look - that's a new one on me :

I think Clarks do go up to a 9 and sometimes offer a width option ?

I've ordered Clarks on line and had them sent from some far flung places

In Cornwall we are not spoilt too much in the way of retail therapy - though there is a Clark shop but usually no size 9's in stock to even try on - though guess if I was inclined I could go around in flip flops or those rubber clogs - and pretend I'd just surfed and was a cool 75 year old dude !!

FancyPants54 profile image
FancyPants54 in reply topennyannie

Definitely an option for summer - cool dude. But not so good for winter. I do like Josef Seibel boots (NOTE: this is the correct spelling, I looked on the bottom of my boot.)

I haven't been shopping in shops in years now. No energy to waste on that. But we do have a local Clarks shop and I can occasionally find something in that fits and I have ordered sandals online and found them to fit because a sandal is more forgiving.

I hate my hypothyroidism with a vengeance and one of the most disappointing parts is the terrible numb/pain/stinging in my feet which means I can no longer wear my wooden Scholl exercise sandals. I adored those. I lived in them from spring to end of autumn. Now I can't feel them so I just walk out of them.

pennyannie profile image
pennyannie in reply toFancyPants54

Knowing what I know now, I believe I have been struggling with undiagnosed Hypo/Graves since a toddler and probably from birth, so I 'm not aware of much of a loss as it's mostly just been a diminishing circle that I had come to accept as ' just me ' .

However now I've read up and self medicating I feel more improved and in control as the knowledge simple isn't there - as it's not as though I didn't grow up presenting with obvious symptoms etc -

just never had a TSH that rose high enough to qualify me for treatment.

Wua13262348 profile image
Wua13262348 in reply toFancyPants54

See reply to Pennyannie.

Wua13262348 profile image
Wua13262348 in reply topennyannie

I , too, am now a size 9. Check out internet site for Fitflop. You can get size 9 and huge range developed by biomechanical engineers- slippers, boots, shoes, sandals, trainers. Often have sales, and Topcashback site will usually give additional discount in the form of cashback.

Think you will be in for a treat.

similar happened to me when I was put on lithium and my tsh went to 77. Hope you feel better soon, a thyroid panel seems essential x

Sweetmango85 profile image
Sweetmango85

thank you to everyone for sharing. My doctor is sending me for further testing. I’m waiting anxiously. I haven’t been able to eat and I’m not sleeping well.

Anxiety is adding to an already stressful situation. I initially started using this service because I was in a thyroid storm a few years back. It took a long time to recover and to now be dealing with this feels devastating.

This morning when I woke up, my arm still feels numb and that pins and needles feeling is running through my body. I felt panic coming on. Is this going to happen again? My brain keeps replaying what happened and I don’t know how to put my mind at ease. I worried this may be my new normal.

Waiting is the hardest. I hate not knowing what’s going on with my body. Not knowing what’s within my power to change or what I should and shouldn’t do. I’m scared.

TNPL profile image
TNPL in reply toSweetmango85

The same thing has happened to me numerous times. The right side of my body goes numb and cold. My right arm feels paralyzed. I went through numeous tests including nerve conduction study for Myasthenia Gravis and genetic testing for periodic paralysis. Nothing showed. What I have discovered is this event happens when I don't include Cytomel/T3 in my daily dose. I take 5mcg at bedtime. In the morning I take NDT 90 mg.

There is a lot more to my story. Living with thyroid illness has been difficult.

CoeliacMum1 profile image
CoeliacMum1

Yes I’ve had similar experience with numbness although on MRI it showed I had had a disc bulge… it had touched my spinal cord causing paraplegic shock below my waist.

From that I found I had hypothyroidism (Hashimoto’s) & Coeliac disease & Pernicious Anemia (PA) my ferritin, folate Vit D & B12 was extremely deficient.

At a full spinal mri they found degenerative cervical discs in my neck, they cause me numbness like you described, headache shoulder neck & pain. I also have degenerative disc’s in lumbar region. Although these discs found to be degenerative, most people over 40 will have wear and tear, it wasn’t thought to be a concern.

I started on B12 injections supplements and was told to only do light duties for 6 months, physiotherapy to help strengthen.

Mine was an obvious bulge to spinal cord theses soft protrusions can happen anywhere and go back just as quick, I had private MRI so it was seen soon after, I can’t say re a CT scan as I was told MRI was better option to see my vertebrae, by orthopaedic consultant. Mine probably happened due to severity of nutritional deficiencies caused by the unknown to me Coeliac Disease and other autoimmune disorders.

I still get numbness odd times in certain positions, in few places so think maybe neurological as disc degeneration, I’ve not explored it any further.

arTistapple profile image
arTistapple

Similar happened to me before diagnosis for hypothyroidism. Felt like I might have had a stroke. Slow speech, unable to support myself, carried to sofa etc. Paramedics called out. No numbness that i recognised at that time but get it quite often now. I am still not optimally medicated and changes to my meds make it worse. Maybe not as devastating as your symptoms but very scary all the same. Otherwise I do feel better.

waveylines profile image
waveylines

I definitely get them to check your b12 level......

Sweetmango85 profile image
Sweetmango85

Thank you for all the replies. You’ve provided me with a lot to consider and bring to my doctors. Love and light to everyone. Thanks for the support.

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