freezing cold and shaking: Before i was diagnosed... - Thyroid UK

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freezing cold and shaking

yorkshiregirl44 profile image
50 Replies

Before i was diagnosed with an underactive thyroid I had episodes of been freezing and shaking all over. It seemed to start in my legs and work its way up my body. The shaking was not like shivering but quite violent shaking. No matter what i did i could not get warm.

Since i started in my medication i can only remember it happening the once and i put that down to me being outside in the cold.

I was wondering if anyone had experienced this as it plays on my mind.

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yorkshiregirl44 profile image
yorkshiregirl44
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50 Replies
Jackie profile image
Jackie

Hi Have you had a recent thyroid test, TSH, T4 and Free T3? What are the results + ranges Always ask for a print out. , receptionist. What meds are you on?. Is it possible that you are over treated. ?Some people think this is associated with Adrenal glands? If thyroid not right,likely to be worse any way. Most Endo`s and some docs say to get the thyroid right first and then see about Adrenal glands.

The most common cause of shakes is corrected calcium too high,over range, have you been tested recently?This can be because you are on vit D, or lots of reasons, including high ;parathyroid, over range.If calcium over range. first step is to look at lowering or stopping the D, if on it?If still over range, next thing is a blood test, must be AM and 3 together, Parathyroid ( PTH), calcium ad D, if 2 over range and D high for you, nuclear scan etc for PTH.

Best wishes,

Jackie

yorkshiregirl44 profile image
yorkshiregirl44 in reply toJackie

My last tsh was 0.81 and t3 4.57...not sure about my calcium..need to get another print out.I now take 100mg ..the chemist send different brands..have taken Mercury brand for last couple of months. Im not up on the different brands but i have read that some people react differently to certain brands.

Jackie profile image
Jackie in reply toyorkshiregirl44

Hi If T4 also low, possibly too low?Although main cause of shakes is electrolytes, especially over range corrected calcium. I am often like that. One time with my very good Cardio, straight away he said it was that., next day , my blood test showed it. I also found after major renal surgery, the same thing, that was very bad.

If your GP was able to do Free T3, she /he must have done T4 as easier to get that. it should be in top third of range, ideally.Essential to always have ranges for blood tests, vary between Labs, that is fine, so long as you have the ranges, ask for a print out with them on.

Best wishes,

Jackie

yorkshiregirl44 profile image
yorkshiregirl44 in reply toJackie

I know its strange but my t4 was not done that time

Jackie profile image
Jackie in reply toyorkshiregirl44

\\If you were on the same meds exactly , the time before , that should be a rough guide.I always ask exactly what tests I am having, then if receptionist etc "looses" them, you are sure of what is missing. Also, I refuse some, eg thyroid and INR in hospital, as I do not want them "messed up". Legal right.

Jackie

marram profile image
marram

Are you saying that it no longer happens, apart from that one time? It is quite likely that it was associated with your underactive thyroid, and the fact that it has mostly stopped now is evidence to support that.

If it were caused by any other condition, thyroid treatment would be very unlikely to resolve it.

yorkshiregirl44 profile image
yorkshiregirl44 in reply tomarram

I think your right it probably was the undiagnosed thyroid at the time...the first time was years before i was diagnosed but i dont know how long i had the antibodys

Kathy21 profile image
Kathy21

I remember used to be cold all the time, even wore a thermal vest all through the summer also the fingers on my left hand went white dead most days buy 11am I couldn't work for at least an hour because I couldn't feel properly. (I am a hairdresser).

At the my GP thought I had Rayards? Disease. I have never had these symptoms since diagnosis 27yrs ago.

yorkshiregirl44 profile image
yorkshiregirl44 in reply toKathy21

Are you not feeling cold now, what was your final diagnosis?

Kathy21 profile image
Kathy21 in reply toyorkshiregirl44

Hypothyroidism and Severn yrs later I got Type one Diabetes. Balancing the two hasn't been easy. I am 66 yrs now and to my knowledge had my first T4 and T3 test beginning of this week so should get results on Monday. I see an endocrinologist for my Diabetes and have really struggled with my blood sugars and now I think that my thyroid hasn't helped but he has never even mentioned my thyroid.

beaton profile image
beaton

Yes me too. Meds help but it still happens,GP says pace yourself???

yorkshiregirl44 profile image
yorkshiregirl44 in reply tobeaton

If i go any slower i will stop

Thyroidmeg profile image
Thyroidmeg

I'm cold but thyroid nurse says so is she and my tsh is perfectly normally so it can't be that . Fed up being cold :(

Fruitandnutcase profile image
Fruitandnutcase in reply toThyroidmeg

Can believe that, my 'consultant ' told me yesterday that 'being tired was not thyroid related'!

Seriously when I was needing my levo increased earlier in the year first time I had horrible palps and second time I was really cold, it wasn't like the cold you feel when the weather is cold either, it is a weird right through your bones, duvet coat, vest, scarf and gloves in June and two hot water bottles in bed type of cold that won't go away no matter how much clothing you wear. Once I got an increase in levo and reached my optimal point within the range I got warm again.

yorkshiregirl44 profile image
yorkshiregirl44 in reply toFruitandnutcase

Where do these Doctors train..they should join thyroid uk dont you think

Kathy21 profile image
Kathy21 in reply toThyroidmeg

My hands get very cold but not too bad otherwise.

Stourie profile image
Stourie in reply toThyroidmeg

How on earth does the thyroid nurse know that your tsh is normal. There is no such thing as normal which is why there is a reference range. If you are still cold then you need more meds to make you warm. That would lower your tsh and it could still be in the reference range so still be "normal"

Jo xx

.

Thyroidmeg profile image
Thyroidmeg in reply toStourie

They don't care as long as tsh in normal range

I also feel cold all the time even wore socks in Florida! I have been treated for hypo for 20 years but never felt any better. Work colleagues make jokes about it must be warm if I'm warm. I also suffer from Sjögren's syndrome and last year took part in clinical trials for a treatment Rituximab which would bring down inflammation levels in saliva, tear and other glands. I noticed that as well as helping with my dry eyes and mouth I stopped feeling cold and didn't have to wear thermals and fur boots all the time. I think it's conclusive that the feeling cold is to do with inflammation of thyroid. As the effect of treatment wore off I started to feel the cold again.

yorkshiregirl44 profile image
yorkshiregirl44 in reply to

Thanks for that, its all making sense to me now Before i was diagnosed i was unable to swallow and i had so many tests yet they were unable to find a cause...months later i was diagnosed with underactive and started taken meds and my swallowing problem went.. i believe my thyroid was inflamed and the meds brought it down.

Thyroidmeg profile image
Thyroidmeg

I don't have a thyroid anymore so it can't be inflamed?

I have dry skin dry eyes and ears. Hot water bottles and fleeces in work even tho others wear tshirts . It's so uncomfortable . I had shingles last year and get pain from that still when I'm really cold .

yorkshiregirl44 profile image
yorkshiregirl44 in reply toThyroidmeg

This site really amazes me as people are so reslilient dealing with all their problems..when people say thyroid problems they just associate it with taking a daily pill...but like we all know its so much more than that

123happy profile image
123happy in reply toThyroidmeg

Hi Meg.

Do your eyelids itch ? Mine do and my throat, but I've had excsma ( can't spell it ) before and wondered it it was that. My meds have just been increased and put on a very hefty iron supplement. 600 mg per day for two months. Think I was Anaemic.

Thyroidmeg profile image
Thyroidmeg in reply to123happy

Not usually itchy just dry but have been dry enough fir the dr to prescribe hydrocortisone cream and anti histamine as he though it was an allergy.

123happy profile image
123happy in reply to123happy

Thanks meg. May need cream for excsma. !

I get short periods of shivering when outside in the cold but it's transient. If the wind suddenly picks up I'll violently shiver for about 1-2 minutes and then it stops and won't restart for another 10 minutes or so.

Gone are the days when I would walk down the road in a t-shirt during the winter! 2 years ago (before any thyroid illness was suspected) I was wearing a cropped fur coat and I was sweating - this was in the middle of December!

What I tend to do is use my boyfriend's hot water bottle (my own one doesn't keep the water hot enough for very long) and even last night I was curled up in bed with it so I was nice and toasty and my boyfriend wasn't! I also swear by a pair of thermal socks I bought online - cost me less than £5 - and they've been a lifesaver. I suffer from terrible Raynaud's in the winter and the socks fixed it within a couple of days. It took a day or 2 longer for it to resolve when in Tenerife and also made my skin crack! :)

Hope you get it sorted soon!

Jo xxx

yorkshiregirl44 profile image
yorkshiregirl44 in reply to

I have an electric duvet now but its made me so soft i have it on at the first sign of a breeze. Like the idea of the socks though

debjs profile image
debjs

I experienced this when I was very hypothyroid. It has resolved now I am treated but I still feel the cold though am still trying to fine tune. I hope now you are treated it does not happen again - it is unpleasant and quite scary,

in reply todebjs

Sorry, do you mean to say you experienced Raynaud's when you were very hypothyroid or were you cold/shivery?

Jo xxx

yorkshiregirl44 profile image
yorkshiregirl44 in reply to

Not been diagnosed with Raynauds.i was freezing and you could see my body shaking...when my daughter saw me she said i looked in shock.

yorkshiregirl44 profile image
yorkshiregirl44 in reply todebjs

I think your right it did go away when i started on medication... the one time i felt it coming on whilst on meds i think i was anxious and afraid that i was going to feel like i did before.

yorkshiregirl44 profile image
yorkshiregirl44 in reply todebjs

It is scary but it helps when others can identify with it..you dont feel quite so alone..thanks

Heloise profile image
Heloise

Adding heat inside the body is more helpful. You could try powdered ginger in your tea or a little cayenne on other foods.

yorkshiregirl44 profile image
yorkshiregirl44 in reply toHeloise

Thanks..because i did feel very cold from the inside out

Fruitandnutcase profile image
Fruitandnutcase in reply toyorkshiregirl44

It is such a weird cold isn't it. It was really odd to be so cold yet be surrounded by people wearing summer clothes.

What surprised me was that the practise nurse didn't even seem to notice when I stripped off and made a pile of all the clothing I removed to have my blood taken.

Same as when you shake hands with your doctor and your hand is freezing on a warm day - way back in olden days when doctors went by how patients felt they used that sort of thing as part of their diagnosis. Sadly times have changed

yorkshiregirl44 profile image
yorkshiregirl44

I remember the first time it happened it was in august and quite warm. Although i dont feel that way now its always in the back of my mind..it really scared me.The adrenal stress makes sense to em seeing Dr.P about that soon. Just one more thing to worry about i guess..

debjs profile image
debjs

Mine happened in the summer too and external temperature seemed to make no difference. It was also accompanied by internal shivering/shuddering which has gradually subsided as my dose of Armour has increased. I think Diana Holmes mentions experiencing it in her book 'Tears behind closed doors'.

yorkshiregirl44 profile image
yorkshiregirl44 in reply todebjs

Not heard of that book...will add it to my collection..thanks

Thyroidmeg profile image
Thyroidmeg

I've got a plug in heat pad which is like a mini over blanket I put on my knees in work . I was never cold before total thyroidectomy. Now I take hot water bottle out with me some days ..

yorkshiregirl44 profile image
yorkshiregirl44 in reply toThyroidmeg

Do you experience episodes of been very hot?

Thyroidmeg profile image
Thyroidmeg in reply toyorkshiregirl44

Sometimes (it shocks me) but mostly very cold

yorkshiregirl44 profile image
yorkshiregirl44 in reply toThyroidmeg

My heat rush starts in the middle of the night,,covers off and then icy cold in the morning.we cant win with this

puncturedbicycle profile image
puncturedbicycle

I used to feel so cold it would make me nauseated. Once I started feeling a little better on a higher dose of t4 I'd occasionally feel violently overheated. One moment too long in my coat indoors and I'd feel suffocated. The climate control is much better now I'm on adequate meds.

yorkshiregirl44 profile image
yorkshiregirl44 in reply topuncturedbicycle

I didnt get my t4 checked last time only tsh and t3 got more bloods in just over a week,,its re-assuring that once meds are sorted you can start to feel alot better

puncturedbicycle profile image
puncturedbicycle in reply toyorkshiregirl44

Well, I'm still experiencing a bit of up and down but certainly for a couple of months with a good dose of t3 added in with t4, I had relief from most of my symptoms and a great deal more strength and energy. I helped someone move house and was able to handle heavy boxes, I started running again every day, I was able to get through an energetic day with an early start, etc. For the last two or three weeks I've felt under the weather but I hope I can get back to feeling good again. Sometimes it seems like it's two steps forward and one step back.

yorkshiregirl44 profile image
yorkshiregirl44 in reply topuncturedbicycle

It must feel good to have a normal ish day,,, get up in the morning and still have some energy to go about your day....you forget what it was like to be able to cook, shop, work and still enjoy yourself, mostly now its about one task at a time and then rest...im happy for you that your making some progress

mado profile image
mado

Yes I had it a couple of times, felt faint as well, rand Nhs direct they said its temperature, take painkillers and don't sit near the radiator to try keeping warm. Once your meds are sorted, it shouldn't happen. Just feeling cold is another thing

Happy-go-lucky profile image
Happy-go-lucky

I had shivers right through my body, bad anxiety, felt sick and dizzy. Was diagnosed with labrinthitis at first had my ears syringed. I started cbt before my diagnosis of low thyroid. Was borderline at first. On the Meds for life now. Hope this helped x

kathypr profile image
kathypr

This sounds familiar with the only difference that I start to sweat after getting warm up; and then I feel a sense of relief in my bones. Can someone help me. Point me in the right direction.

marilyn12378 profile image
marilyn12378

My friend told me that she started shacking allot and that after she got really cold and that she started to see kind of blurry.

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