Problem with being extremely cold

[Devoid]

Hi I have touched on this before but just wondering if anyone has experienced it.I’ve had episodes of being really cold even though the house is very warm,layers of clothes, hot water bottle etc. On Thursday it lasted over two hours and then I get very hot face, head and then it settles, but leaves me feeling worn out and weak. I had thyroid test last time and that came back normal

[MrsNails]

Me! I’m suffering a bit with it at the moment, my body is generally OK but certain areas especially in muscle groups can feel freezing cold to the point of ‘burning’ l had to ask for a hot water bottle at 5am this morning even thought MrT said l was toasty but my face, neck, arms, thighs were ‘burning’ cold!

I had this much more markedly before l was diagnosed & l used to wrap up in layers of velvet, luckily it was winter or it might have looked a bit strange in the summer!

I’m reducing from 12.5mg -> 12mg on a very slow taper at the moment but me thinks it maybe too much......

So l may just return to 12.5mg for a week or two & then try again!

Have you recently tapered?

Kind Regards

MrsN

[Devoid in reply to MrsNails]

Yes I’m doing 2 to 1 . On Wednesday I felt better than I have since diagnosis, then Thursday was a different story, I was wondering if the thyroid gland can misfunction a bit as it doesn’t look like this is a symptom of adrenal insufficiency. It’s very random as I had been out and was fine walking, then when I felt it coming on I had kept busy to try and warm up but it just wasn’t helping. I didn’t get the extreme shakes that I’ve previously had but it gives me a strange slightly anxious feeling

[MrsNails in reply to Devoid]

Probably shortage of Cortisol & as you kept going thinking you’d warm up it was actually making it harder on your body. Have you thought about going down by 0.5mg as 2mg->1mg is a 50% drop so your body will notice much more.

[Devoid in reply to MrsNails]

Hi I haven’t tried cutting a 1 mg because of how small they are but have been doing a very gradual drop, 1st week just one day of 1mg 2nd week 2 and this week alternate days, have you ever cut one mg?

[HeronNS in reply to Devoid]

I cut 1 mg tablets. I got a free cutter from my pharmacist and found if it was on the counter when I lowered the guillotine I would get one nice half and one half all crumbs. However if I hold the cutter in the air it nearly always gives me two reasonably intact parts. They are not always exact, but close enough for our purposes.

[MrsNails in reply to Devoid]

I have but now l use 2.5mg & make my dose up with 5’s; 2.5’s & 1mg (as my dose is much higher) but lots of people do cut 1mg very successfully.....

[Devoid in reply to MrsNails]

Hi just had a thought, will check my blood pressure next time it happens as I’ve just read low cortisol can reduce blood pressure and that in itself could be the cause of the coldness. I’ve been on blood pressure tablets since being ill but previously had low blood pressure, they might just be taking it too low.Thanks for getting me thinking 😊

[MrsNails in reply to Devoid]

Hi, it’s worth checking your BP when you feel ok to get a baseline as your BP may may dropped to more normal levels now you’re on lower doses of Pred.

Take Care 🌸

[Devoid in reply to MrsNails]

I check it pretty regularly so that I can see how it’s improved since reducing the steroids, and also I would like to get off the medication if possible. Some times I think when I start to feel well something happens to remind it’s not me in control!! Thanks again, keep safe 😊

[Devoid]

Hi that’s not how I am, most of the time I’m okay but then just have episodes of this extreme cold and after feeling like I’ve been run over by a bus

[HeronNS in reply to Devoid]

It does sound like a shortage of cortisol. No doubt you need to have that checked but in the meantime if you get a spell of chills don't try to warm yourself up without help. Get a hot water bottle or whatever the modern equivalent is, have a warm drink, something like that, to provide an external boost as your internal furnace is not up to the task. And it could be an interesting and safe enough experiment to see what happens if you increase your pred.

[piglette]

I am always suffering from being cold. I will lie in bed and should be perfectly warm and my feet feel warm and still I am cold.

[Q-owl]

Thanks for this post. I've been getting times of feeling very cold, even numb fingers while I've been reducing from 3.5 to 3. This cold weather hasn't helped. I find that 2.5 mg pills split beautifully into 1.25 mg, might be useful in your taper.

[Janet57]

Read your comment about reducing from 2mg to 1mg - that’s a big drop. Tapering to 1.5mg might help. I have a pill cutter that works every time. Bought cheaply from the big on-line company at £2.99. Think it’s called Safe & Sound pill cutter. It’s helping me reduce more effectively without the up and down days I used to get. I’m now at 3.5 mg. I also get colder than I used to - but that could be just age. 🤣

[herdysheep]

For decades I have felt as though I could heat a village, but have been getting similar spells of feeling very cold. A couple of fingers and thumb get extremely cold and go white. Body wise, I warm up to hot again when I have had a meal, but the digits take ages. Trying to understand the body is extremely taxing on the mind!!!!!!

[MrsNails in reply to herdysheep]

Hi HS

That sounds a bit like Raynaud's disease & worth mentioning to your GP next time you have an appointment.

nhs.uk/conditions/raynauds/

Take Care

MrsN

[herdysheep in reply to MrsNails]

It seems fairly minor in the scale of things

[PMRpro Ambassador in reply to herdysheep]

It depends what is causing it but Raynauds can become really bad and inconvenient! It can be a sign of the vasculitis getting worse.

[herdysheep in reply to PMRpro]

Deep joy. Do I add to list or do the ostrich? I'll keep an eye on it, thanks. At least we are not as cold as you vis a vis temps outside!

[PMRpro Ambassador in reply to herdysheep]

Ah yes - but I'm sitting here with bare feet