Why am I so cold?

tigerlily72

Well-Known Member
Messages
516
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I'm starting to get pretty desperate. I'm waiting on an appointment to see a neurologist (it takes weeks to see one apparently) and recent blood tests came back ok/normal.

I'm extremely fatigued and constantly feeling cold. I have lots of "cold" spots on my body - tops of legs, shoulders, arms and am struggling to feel warm. I was told to stop my blood pressure meds about 2 weeks ago as it went a bit low. But after just over a week it was creeping back up - so I'm back on them. This weekend my blood pressure has been up and down like a yo-yo and my pulse rate has been high. My resting pulse is typically high 50's to mid 60's but has been up in the high 80's and as high as 101. I feel awful.

I was tested for inflammation and thyroid issues - both ok although told my inflammation was borderline at 1.76 and Dr said it was nothing to be concerned about when I queried what it meant. My fasting blood sugar was 5.0 so pretty pleased with that. My Dad has told me to phone my surgery tomorrow and get an emergency appointment although, strictly it's not an actual emergency - think he's more worried than me.

Does anyone have any ideas as to what's going on or experienced similar?

Oh, and I'm overweight as opposed to underweight! I'm also diet controlled only for my type 2.

 

Sunstreaker

Well-Known Member
Messages
89
Type of diabetes
Type 2
Treatment type
Diet only
Tiger lily, I would say 50bpm is low, 80bpm around usual and 101 a little High but being overweight may explain .
 

AndBreathe

Master
Retired Moderator
Messages
11,320
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I'm starting to get pretty desperate. I'm waiting on an appointment to see a neurologist (it takes weeks to see one apparently) and recent blood tests came back ok/normal.

I'm extremely fatigued and constantly feeling cold. I have lots of "cold" spots on my body - tops of legs, shoulders, arms and am struggling to feel warm. I was told to stop my blood pressure meds about 2 weeks ago as it went a bit low. But after just over a week it was creeping back up - so I'm back on them. This weekend my blood pressure has been up and down like a yo-yo and my pulse rate has been high. My resting pulse is typically high 50's to mid 60's but has been up in the high 80's and as high as 101. I feel awful.

I was tested for inflammation and thyroid issues - both ok although told my inflammation was borderline at 1.76 and Dr said it was nothing to be concerned about when I queried what it meant. My fasting blood sugar was 5.0 so pretty pleased with that. My Dad has told me to phone my surgery tomorrow and get an emergency appointment although, strictly it's not an actual emergency - think he's more worried than me.

Does anyone have any ideas as to what's going on or experienced similar?

Oh, and I'm overweight as opposed to underweight! I'm also diet controlled only for my type 2.

I have temperature regulation issue, but mine happen all over (although radiate from my shoulders), and are time of the day linked.

Have you lost any weight in the recent past, whether or not you're now skinny or carrying a few spare pounds. Are the feelings of cold uniform over your body, or do your feelings of cold differ at different times of the day?

I have now seen 2 endocrinologists, and have a raft of additional tests to have done. All results considered "in range".

Just like my blood numbers, I don't ever accept a response of fine, or bordereline, I want to see the numbers. Has your doc shared what his feeling were, or what he was testing for, to rule in/out?

If his first thought was thyroid, did he do the full thyroid panel or just the TSH or FT4 levels? Those might help if things were waaaaaaay off, bat are no means in any way conclusive. Inflammation is another fragment of the fuller picture, but for thyroids you really need tests covering anti-bodies and cortisol. Any thyroid related tests would ideally be done fasting, as levels drop during the day, and that happening on a personalised profile.

My second endo was much more thorough, in my view, and has asked for a raft of tests to be done. Only once they are done can any further steps be considered, but it could (due to family history of auto-immune conditions) be a hand off to a rhuematologist, or a gastroenterologist.

Irrespective of test results, I have been instructed to go gluten free, as those with AI issues tend to do better without gluten in their systems. Deep joy. I have embarked on research for this particular approach, but haven't changed my diet, until the fasting bloods are drawn. I won't bore you with why those haven't been drawn yet, as it's a bit tiresome.

Please do get your actual test results. The Thyroid UK site has an active community on it, with people with far more knowledge than me. https://healthunlocked.com/thyroiduk They're very good at interpreting test numbers (a bit like on here, for diabetes), but you'd need the numbers, plus a note of whatever range your local lab considers in range.

I hope you find a way forward soon.
 

tigerlily72

Well-Known Member
Messages
516
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I have temperature regulation issue, but mine happen all over (although radiate from my shoulders), and are time of the day linked.

Have you lost any weight in the recent past, whether or not you're now skinny or carrying a few spare pounds. Are the feelings of cold uniform over your body, or do your feelings of cold differ at different times of the day?

I have now seen 2 endocrinologists, and have a raft of additional tests to have done. All results considered "in range".

Just like my blood numbers, I don't ever accept a response of fine, or bordereline, I want to see the numbers. Has your doc shared what his feeling were, or what he was testing for, to rule in/out?

If his first thought was thyroid, did he do the full thyroid panel or just the TSH or FT4 levels? Those might help if things were waaaaaaay off, bat are no means in any way conclusive. Inflammation is another fragment of the fuller picture, but for thyroids you really need tests covering anti-bodies and cortisol. Any thyroid related tests would ideally be done fasting, as levels drop during the day, and that happening on a personalised profile.

My second endo was much more thorough, in my view, and has asked for a raft of tests to be done. Only once they are done can any further steps be considered, but it could (due to family history of auto-immune conditions) be a hand off to a rhuematologist, or a gastroenterologist.

Irrespective of test results, I have been instructed to go gluten free, as those with AI issues tend to do better without gluten in their systems. Deep joy. I have embarked on research for this particular approach, but haven't changed my diet, until the fasting bloods are drawn. I won't bore you with why those haven't been drawn yet, as it's a bit tiresome.

Please do get your actual test results. The Thyroid UK site has an active community on it, with people with far more knowledge than me. https://healthunlocked.com/thyroiduk They're very good at interpreting test numbers (a bit like on here, for diabetes), but you'd need the numbers, plus a note of whatever range your local lab considers in range.

I hope you find a way forward soon.

Thanks for this, it's really helpful. I've no idea what tests were requested re: my thyroid. I think I'm going to have to ask what and the numbers/figures corresponding to each one. I had lost some weight in the past but over a year ago (approx 2 stone) but put some back on. I've prob lost just over half a stone in the last 4-6 months but need to lose more and one of the Drs I've seen recently has advised me to lose weight - easier said than done!

It seems to be different parts of my body at different times. The tops of my legs almost feel like ice has been applied to them - leaving them with a "burning" coldness if that makes any sense? I feel so very down with it and almost like some of the Drs feel I'm imagining it which I assure you I'm not!

I'm going to have a look at your link. The weird thing is that my husband has hypothyroidism and felt awful for a very long time before he was finally diagnosed (our previous Dr was useless and very dismissive of his symptoms). Much as I dislike blood tests I may have to pester for more bloods or other specialists as I can't carry on like this much longer :(
 

AndBreathe

Master
Retired Moderator
Messages
11,320
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Thanks for this, it's really helpful. I've no idea what tests were requested re: my thyroid. I think I'm going to have to ask what and the numbers/figures corresponding to each one. I had lost some weight in the past but over a year ago (approx 2 stone) but put some back on. I've prob lost just over half a stone in the last 4-6 months but need to lose more and one of the Drs I've seen recently has advised me to lose weight - easier said than done!

It seems to be different parts of my body at different times. The tops of my legs almost feel like ice has been applied to them - leaving them with a "burning" coldness if that makes any sense? I feel so very down with it and almost like some of the Drs feel I'm imagining it which I assure you I'm not!

I'm going to have a look at your link. The weird thing is that my husband has hypothyroidism and felt awful for a very long time before he was finally diagnosed (our previous Dr was useless and very dismissive of his symptoms). Much as I dislike blood tests I may have to pester for more bloods or other specialists as I can't carry on like this much longer :(

I should have clarified earlier, but are you finding you need to dress differently to other, or have your central heating set higher than usual, at this time of year, or for your OH, for example? If you do either/both of the foregoing, what does that mean on a practical basis?

One thing I should also have mentioned was that the second Endo did state that it's unusual for feeling cold be be anything sinister. With sinister findings the patient is more likely to be reporting feeling hot, rather than cold.
 

tigerlily72

Well-Known Member
Messages
516
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I should have clarified earlier, but are you finding you need to dress differently to other, or have your central heating set higher than usual, at this time of year, or for your OH, for example? If you do either/both of the foregoing, what does that mean on a practical basis?

One thing I should also have mentioned was that the second Endo did state that it's unusual for feeling cold be be anything sinister. With sinister findings the patient is more likely to be reporting feeling hot, rather than cold.

Yes, I'm having to wear warmer clothes and a thickish cardy at work. I'm usually known for having the fan on and opening windows! And yes, I've had to turn the heating up to the point where my poor hubby is too hot because I'm cold. Facially, when in bed I'm getting cold sweats. It's just not normal.
 

chalup

Well-Known Member
Messages
1,745
Type of diabetes
Type 2
Treatment type
Other
I caught an adenovirus when I was younger. I did not feel sick but it started with bone deep cold. It was august and very hot but I was in a heated waterbed with every blanket in the house on me but still freezing cold. After a few days the cold left and I got a measles like rash for a few days the it hit my joints bad. Weirdest thing ever, then it just stopped and I was fine.
 

tigerlily72

Well-Known Member
Messages
516
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I've had a rough night and awake during nearly all of it and in pain. Not feeling well enough to go in to work so requesting urgent appointment with Drs once the phone lines open.
 

Engineer88

Well-Known Member
Messages
2,130
Type of diabetes
Type 1
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Pump
All of my initial thoughts are also thyroid - I second everything said above about needing antibodies and T3 testing and a full print out of results given.
 

ickihun

Master
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13,698
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I have temperature regulation issue, but mine happen all over (although radiate from my shoulders), and are time of the day linked.

Have you lost any weight in the recent past, whether or not you're now skinny or carrying a few spare pounds. Are the feelings of cold uniform over your body, or do your feelings of cold differ at different times of the day?

I have now seen 2 endocrinologists, and have a raft of additional tests to have done. All results considered "in range".

Just like my blood numbers, I don't ever accept a response of fine, or bordereline, I want to see the numbers. Has your doc shared what his feeling were, or what he was testing for, to rule in/out?

If his first thought was thyroid, did he do the full thyroid panel or just the TSH or FT4 levels? Those might help if things were waaaaaaay off, bat are no means in any way conclusive. Inflammation is another fragment of the fuller picture, but for thyroids you really need tests covering anti-bodies and cortisol. Any thyroid related tests would ideally be done fasting, as levels drop during the day, and that happening on a personalised profile.

My second endo was much more thorough, in my view, and has asked for a raft of tests to be done. Only once they are done can any further steps be considered, but it could (due to family history of auto-immune conditions) be a hand off to a rhuematologist, or a gastroenterologist.

Irrespective of test results, I have been instructed to go gluten free, as those with AI issues tend to do better without gluten in their systems. Deep joy. I have embarked on research for this particular approach, but haven't changed my diet, until the fasting bloods are drawn. I won't bore you with why those haven't been drawn yet, as it's a bit tiresome.

Please do get your actual test results. The Thyroid UK site has an active community on it, with people with far more knowledge than me. https://healthunlocked.com/thyroiduk They're very good at interpreting test numbers (a bit like on here, for diabetes), but you'd need the numbers, plus a note of whatever range your local lab considers in range.

I hope you find a way forward soon.
Gosh! @AndBreathe . I'm looking at going gluten free too. Having to see endo about palpatations and irratic thyroid performance on wednesday. Did your endo suggest gluten free?
@tigerlily72 when I read your post I instantly thought thyroid and meds. Some side affects from blood pressure tabkets are cold hands/feet. I think your being investigated so they will sort out the problem. It just takes time. Any chest pains or palpatations?
 

ickihun

Master
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13,698
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Type 2
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I've had a rough night and awake during nearly all of it and in pain. Not feeling well enough to go in to work so requesting urgent appointment with Drs once the phone lines open.
Where is the pain? Chest?
 

ickihun

Master
Messages
13,698
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You may have an infection not picked up. Let us know what gp says hun. ♡♥♡
 

tigerlily72

Well-Known Member
Messages
516
Type of diabetes
Type 2
Treatment type
Tablets (oral)
You may have an infection not picked up. Let us know what gp says hun. ♡♥♡

They couldn't give me an appointment until later this afternoon (ah well, at least I'll be seen today).

The pain is mostly in my legs. It feels like an icy cold compress is being applied to the tops of them. I was sobbing with the pain in the early hours this morning. But I'm also getting the odd cold sweat so don't know if it's connected? I'm so shattered and have zero energy. I'm seeing a different Dr who I've not seen before (female) so I hope she listens.
 

tigerlily72

Well-Known Member
Messages
516
Type of diabetes
Type 2
Treatment type
Tablets (oral)
All of my initial thoughts are also thyroid - I second everything said above about needing antibodies and T3 testing and a full print out of results given.

I'll try and remember to ask for them!
 

AndBreathe

Master
Retired Moderator
Messages
11,320
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Gosh! @AndBreathe . I'm looking at going gluten free too. Having to see endo about palpatations and irratic thyroid performance on wednesday. Did your endo suggest gluten free?
@tigerlily72 when I read your post I instantly thought thyroid and meds. Some side affects from blood pressure tabkets are cold hands/feet. I think your being investigated so they will sort out the problem. It just takes time. Any chest pains or palpatations?

Yes, it was an Endo recommendation, but only on the basis of the number of AI conditions experienced by my close family. Clearly, as a lower carber, I have already given up bread, pasta and so on. Of course, that's not the full picture. When reading product labels anew, all sorts of "stuff" contains gluten; like Worcestershire Sauce, soy sauce, mustard (in jars, not mustard seeds) and even some vinegars. I don't intend buying loads of commercial gluten free products, just as I didn't buy anything "diabetic".
 

Freema

Expert
Messages
7,346
Type of diabetes
Type 2
Treatment type
Diet only
I'm starting to get pretty desperate. I'm waiting on an appointment to see a neurologist (it takes weeks to see one apparently) and recent blood tests came back ok/normal.

I'm extremely fatigued and constantly feeling cold. I have lots of "cold" spots on my body - tops of legs, shoulders, arms and am struggling to feel warm. I was told to stop my blood pressure meds about 2 weeks ago as it went a bit low. But after just over a week it was creeping back up - so I'm back on them. This weekend my blood pressure has been up and down like a yo-yo and my pulse rate has been high. My resting pulse is typically high 50's to mid 60's but has been up in the high 80's and as high as 101. I feel awful.

I was tested for inflammation and thyroid issues - both ok although told my inflammation was borderline at 1.76 and Dr said it was nothing to be concerned about when I queried what it meant. My fasting blood sugar was 5.0 so pretty pleased with that. My Dad has told me to phone my surgery tomorrow and get an emergency appointment although, strictly it's not an actual emergency - think he's more worried than me.

Does anyone have any ideas as to what's going on or experienced similar?

Oh, and I'm overweight as opposed to underweight! I'm also diet controlled only for my type 2.


Hey if you are on metformin you can be seen as normal in thyroid levels when actually being too low as the TSH seems to be lowered by metformin even though ones thyroid hormons are too low
 

tigerlily72

Well-Known Member
Messages
516
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Hey if you are on metformin you can be seen as normal in thyroid levels when actually being too low as the TSH seems to be lowered by metformin even though ones thyroid hormons are too low

I'm diet controlled (NO metformin or insulin).
 
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AndBreathe

Master
Retired Moderator
Messages
11,320
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I'll try and remember to ask for them!

Your GP is likely only to want to test TSH, which is only helpful, if an extreme result is returned.

Between now and this afternoon, why not join that site I suggested yesterday and ask then what bloods they think you should have. They're very helpful. You must go prepped for your appointment.

Write down all your symptoms, when they started, how it varies, and how you generally feel. When we see our Docs when we're not feeling too hot, we don't always remember to tell them everything we want to, and of course that can impact on the appointment outcomes. It is important you put things into context too. Saying we feel the cold doesn't help the doc understand what that really means.

Soooooooooo, do mention that you are finding you are dressing differently to most people (I think you mentioned that last night?), and that you are forced to use your heating at higher temperatures than usual these days (tell her what that is, for example, you now have the heating thermostat set to 25c, or whatever, whereas before it used to be at 21c, or whatever. Also tell her your husband is now finding it too hot, whereas before it was a good temperature for you both. Do you see what I'm doing there? Painting the picture of what it really means.

When I first mentioned the cold to my GP, I could almost read her mind saying, "wear a sweater then!". You need to put it into a practical, understandable context.

If you are cold and in pain, what happens when you go in the shower or bath? Does that feel nice and give you some temporary respite, or make no difference? Having just looked at your profile, I notice you are taking Gabapetin. Does that impact the pain at all?
 

tigerlily72

Well-Known Member
Messages
516
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Your GP is likely only to want to test TSH, which is only helpful, if an extreme result is returned.

Between now and this afternoon, why not join that site I suggested yesterday and ask then what bloods they think you should have. They're very helpful. You must go prepped for your appointment.

Write down all your symptoms, when they started, how it varies, and how you generally feel. When we see our Docs when we're not feeling too hot, we don't always remember to tell them everything we want to, and of course that can impact on the appointment outcomes. It is important you put things into context too. Saying we feel the cold doesn't help the doc understand what that really means.

Soooooooooo, do mention that you are finding you are dressing differently to most people (I think you mentioned that last night?), and that you are forced to use your heating at higher temperatures than usual these days (tell her what that is, for example, you now have the heating thermostat set to 25c, or whatever, whereas before it used to be at 21c, or whatever. Also tell her your husband is now finding it too hot, whereas before it was a good temperature for you both. Do you see what I'm doing there? Painting the picture of what it really means.

When I first mentioned the cold to my GP, I could almost read her mind saying, "wear a sweater then!". You need to put it into a practical, understandable context.

If you are cold and in pain, what happens when you go in the shower or bath? Does that feel nice and give you some temporary respite, or make no difference? Having just looked at your profile, I notice you are taking Gabapetin. Does that impact the pain at all?

This is really useful. Thank you :)

The gabapentin helps a bit but I often have to increase it to 900mg for it to give relief. And by the time it kicks in it's wearing off :banghead:. A warm bath does help a bit but it's only temporary.
 
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AndBreathe

Master
Retired Moderator
Messages
11,320
Type of diabetes
I reversed my Type 2
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This is really useful. Thank you :)

The gabapentin helps a bit but I often have to increase it to 900mg for it to give relief. And by the time it kicks in it's wearing off :banghead:. A warm bath does help a bit but it's only temporary.

Tell her that too.

The one thing I took away from my Endo appointment was that feeling cold is rarely related to anything sinister. Of course, that doesn't make it tolerable to live with.

I do hope you have a productive appointment. I doubt you'll leave with any answers, because it'll need investigation that won't happen within a single GP appointment.

If you are to have thyroid and/or cortisol bloods done, please do have them done first thing in the morning, fasted. Our hormone levels vary during the 24 hour cycle, and a bit like our blood sugars, unless you test in a controlled way, the tests might help, but maybe could be better.

Maybe pop back and let us know how it goes later? I'll keep my fingers crossed for you.
 
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