Re: thermal dysregulation?

May 24, 2006

Hi ,

I have had very bad temperature dysregulation for many years - and this

symptom has been exceptionally difficult to cope with over the last 2

(indeed it has been the worst thing ever in my 36 yrs of this illness).

I have found nothing to help but would be glad of others suggestions

too. I think it more a nervous system thing rather than an endocrine

one. Anything that depresses the cns seems to help in the short term -

eg. Alcohol (but this is a bit of a no-no generally for our condition).

When I feel the temperature thing is all too much for me, I have a glass

of white wine or have some chocolate. I know I'm going to be hugely

'thrashed' for that suggestion, but desperate times make for desperate

measures. It will quell things for a bit *in me* but it doesn't mean it

will work for you and you may be more intolerant than I am to these

substances. Of course they are only an occasional measure - I'm not

about to turn into a lush :-)

Rosie

Subject: thermal dysregulation?

Hi

I am wondering, does anyone know anything about thermal dysregulation

(hypothermia/hyperthermia) please?

Have you heard of any supplements or treatments that can help with this

problem?

best wishes

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

May 24, 2006

Rosie wrote:

> I have had very bad temperature dysregulation for many years

What you say interests me.

Could you provided some data on your temperature dysregulation?

For example the range of temperatures you experience and the frequency

of temperature changes you experience over periods of time, such as in a

24 hour period, or perhaps a week, or a month?

Will in Seattle

a.k.a. " Sleepless "

May 25, 2006

Hi Will,

It is a long while since I bothered to take temperature readings, but

during the times I did, I always had lower than usual ranges - from

about 95f to 97.5f at best.

I think the perception of temperature changes may be worse than the

actual bodily change however.

I have always been a very cold person, but became 'hotter' from 1996.

This wasn't too bad as I was still able to adjust clothing and heating

etc to compensate.

Although I have been substantially relapsed since 1994 I had a very bad

crash within that time in 2004. My temperature went haywire with my legs

ice cold and the top of me boiling hot with mega sweats etc. This is

still happening now but I am (sort of ) adapting to it, but it is very,

very unpleasant and is accompanied by a restless/dystonic/churning

sensation in my cns for much of the time. My perception of temperature

vacillates wildly for little or no reason and it is still split in half.

I have very unpleasant sensations of 'clamminess' as though my clothes

are wet too.

I have had all the hormone checks one can have and nothing has shown up.

I'm pretty certain in my own mind that it is just another (particularly

horrible) part of the ME syndrome which I hope will pass in time. It's

amazing what one can get used to!!

I'm not sure if I have given you info that is of use to you. Please

feel free to ask anything I have not covered.

I assume from your interest that you too have temperature problems? I'd

be interested in hearing how they manifest in you, and what (if

anything) you do to ameliorate them?

BW

Rosie

Rosie wrote:

> I have had very bad temperature dysregulation for many years

What you say interests me.

Could you provided some data on your temperature dysregulation?

For example the range of temperatures you experience and the frequency

of temperature changes you experience over periods of time, such as in a

24 hour period, or perhaps a week, or a month?

Will in Seattle

a.k.a. " Sleepless "

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

May 25, 2006

Hi I am not Rosie,

But I do suffer from thermal dysregulation symptoms so you might be

interested.

Roughly twice a week my body temperature drops and I get so freezing

cold through and through that I need blankets, socks, warm wheatbags

and a hot drink to raise my temperature to normal; this normally

takes about 30 minutes. This bears no relationship to the temperature

of the room, I freeze easily in a room that is 80 degrees. When this

happens to me in bed at night; by the time the hypothermia wakes me I

am so frozen through that I find it very difficult to move.

MY doctors advice? Keep a thermos of hot coffee beside the bed.

Then, far more frequently, I get so overheated that my hair is soaked

through with perspiration at least 3 times a day. This can happen

when I am resting, and it always happens without fail when I am

eating warm food. I dont drink hot drinks unless I am hypothermic

because otherwise they cause an uncomfortable rise in body

temperature.

I dont need a thermometer to know that my bodies thermostat is not

working I can feel the immense discomfort-and I gather this is a

frequently recorded symptom of neurological illnesses where the

hypothalamus is dysfunctioning?

When I am undergoing the immense discomfort that this symptom causes

I am not thinking 'I need to get a thermometer to find out what my

temperature is'

I can already unpleasantly FEEL what my temperature is, and I am

thinking 'get warm-or cool down' as fast as I possibly can.

What might mean something to you but means nothing to me; is that

when I did take my waking body temperature; every morning before

getting up; for three weeks about a year ago; to see if there may be

an underlying thyroid problem;

it was interesting to note that even on mornings when my bedclothes

were wet through with perspiration and I felt feverish,

my oral temperature was still significantly below normal; between 95

and 96; this was my same temperature range every morning before

getting out of bed for three weeks, anywayay, not once was my oral

temperature normal, always below.

I had some thyroid blood tests but because these tests did not show

abnormal levels nothing else has been done by my (british NHS) GP; I

guess she figures if the tests are showing nothing out of the

ordinary; then there must be nothing wrong with my thyroid either.

anyway, I hope you will find this interesting.

I wouldnt think that anyone else who suffers with this distressing

symptom will have been reaching for the thermometer whilst they are

enduring it either, I imagine that we are too busy feeling absolutely

dreadful and reaching for the ice or the hot wheatbags;

But, if it is anything to judge by, I live in the mid-UK which is not

exactly reknowned for its sizzling temperatures- and I dont have a

lot of money, but I have still paid out to have ceiling fans fitted

in every single room of my house, because they are a total necessity

for me.

all the best

yvonne

> > I have had very bad temperature dysregulation for many years

> What you say interests me.

>

> Could you provided some data on your temperature dysregulation?

>

> For example the range of temperatures you experience and the

frequency

> of temperature changes you experience over periods of time, such as

in a

> 24 hour period, or perhaps a week, or a month?

>

> Will in Seattle

> a.k.a. " Sleepless "

>

May 25, 2006

Rosie wrote:

> Please

> feel free to ask anything I have not covered.

> I assume from your interest that you too have temperature problems? I'd

> be interested in hearing how they manifest in you, and what (if

> anything) you do to ameliorate them?

>

Hi Rosie!

My temperature is nearly always at the low end of the thermometer,

usually around 97.0 F but sometimes as low as 96.0 F.

Like you, my legs often feel painfully cold, and I used to suffer from

night sweats.

Ken Lassesen has suggested that increasing my vitamin D intake could

help boost my temp. Have you tried that?

Will in Seattle

a.k.a. " Sleepless "

May 25, 2006

,

I don't know if you've had your Vitamin D measured but from my

experience (having difficulty regulating body temp in the past) is

that it may have been due to very low Vit D levels I had for years. I

could not let myself get the least bit overheated or my heart would

race and my legs would get very weak etc.

It may or may not be due to hypothyroid. I became hypothyroid and

although the meds balanced everything out it did not help my body temp

problems at the time.

Something to consider.

Nat

May 25, 2006

Hi Nat

thanks for your ideas they are interesting I have taken note.

Please can you explain much more?

How did you find out that you had low vitamin D levels?

What do you think caused you to have low vit D levels?

Did you have any other symptoms of low vitamin D, such as Ricketts?

Do you know how I can find more information on the net regarding any

possible connection between thermal disregulation and vitamin D

deficiency?

I havent found any myself yet but I may have been looking in all the

wrong places.

all the best

yvonne

>

> ,

>

> I don't know if you've had your Vitamin D measured but from my

> experience (having difficulty regulating body temp in the past) is

> that it may have been due to very low Vit D levels I had for

years. I

> could not let myself get the least bit overheated or my heart would

> race and my legs would get very weak etc.

>

> It may or may not be due to hypothyroid. I became hypothyroid and

> although the meds balanced everything out it did not help my body

temp

> problems at the time.

>

> Something to consider.

>

> Nat

>

May 25, 2006

Hi Will,

Yes, I have tried various forms of vitamin D including lanolin based

drops but have reacted badly to all of them. I seem to be exceptionally

sensitive to taking most things - including all the supplements that

*ought* to make me feel better. I do love the sun however and make the

most of it when it decides to come out. I am in South Wales, UK, which

is about the same latitude and climate as Seattle I believe - so you

know what I mean ;-). I don't especially notice much difference

temperature-control wise for being out in the sun but I just generally

feel better.

I still get the night sweats unfortunately, and sweats at other times

too. I think it likely that the better one can feel ME-wise the better

this temperature control might be too. With that in mind I'm trying

just to be as good as I can in terms of pacing and diet in the hope that

an upturn will occur. Any other suggestions gratefully received however

:-)

Rosie

iHi Rosie!

My temperature is nearly always at the low end of the thermometer,

usually around 97.0 F but sometimes as low as 96.0 F.

Like you, my legs often feel painfully cold, and I used to suffer from

night sweats.

Ken Lassesen has suggested that increasing my vitamin D intake could

help boost my temp. Have you tried that?

Will in Seattle

a.k.a. " Sleepless "

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

May 25, 2006

Hi ,

Ask your doctor to test your Vitamin D (25HYDR) via a blood test,

it's a common test.

A couple of years ago my Vit D levels were down at 25 (25-200)so at

the time I thought eating foods high in Vit D would be sufficient but

it wasn't, last year I started taking 1000-2000mg/day + a tsp of Cod

Liver Oil. It's now up at around 100. I'm going to get retested

in a couple of weeks and since it's summer time I will probably

decrease my dosage.

My doctor says our levels should be at 100 and that we don't actually

start " utilizing " Vit D until it reaches 80.

It's common in the general population to have low Vit D levels, this

is what studies are showing. I live in Canada so we have long

winters.

We get Vit D from sunshine as you probably already know and since you

are in the UK I would imagine you don't get much over there either.

Vitamin D is actually a hormone or converts into a hormone. You can

do a search and read more about this, it's interesting.

Nat

May 25, 2006

Hi, .

The low armpit temperature means that your body is operating with a

low metabolic rate. Normally, the average metabolic rate is

controlled by the thyroid. In CFS, however, there appear to be

blocks in the mitochondria of the cells, so that even though the

thyroid may be telling the cells to maintain a normal metabolic

rate, they are not able to do so.

It's true that the hypothalamus normally controls temperature

regulation, and there is lots of evidence for hypothalamus problems

in CFS, so I've thought in the past that this was a good hypothesis

for what is causing the temperature regulation problems.

However, Dr. Peckerman, Dr. Cheney and Dr. Enlander have all

reported low cardiac output in PWCs. When the cardiac output is

low, the sympathetic nervous system decreases the blood flow to the

nonessential organs in order to preserve the operation of the vital

organs, and keep us alive. The skin is one of the nonessential

organs, and its blood flow is cut back. This causes the skin to

feel cold as well as to become dry over the course of time. Dr.

Cheney has pointed out that when there is little blood flow to the

skin, the body loses the ability to regulate core temperature by

adjusting the rate of heat loss from the skin to the environment.

He suggests that because of this, the thyroid downregulates the

metabolic rate in order to prevent the core temperature from going

too high, and that this is what results in the low metabolic rate.

So I'm not sure about this yet. And it's possible that both these

things are going on.

Rich

> > > I have had very bad temperature dysregulation for many years

> > What you say interests me.

> >

> > Could you provided some data on your temperature dysregulation?

> >

> > For example the range of temperatures you experience and the

> frequency

> > of temperature changes you experience over periods of time, such

as

> in a

> > 24 hour period, or perhaps a week, or a month?

> >

> > Will in Seattle

> > a.k.a. " Sleepless "

> >

>

May 25, 2006

Hi Rich

Thank you for this information,

it certainly seems to answer some of my questions-although it has

given me a few new ones to think about too.

I have a telephone consultation appointment coming up with my ME

consultant, thermal dysregulation is on the list for discussion; he

was a blood specialist before he went into ME; I am hoping he may

know something about this.

He knows about the sweating because he saw it happen, and he told me

to regard it as a signal to rest; (in other words I expect its

another response to the cytokenes that have been released by

my 'overdoing things');

but I was not in a fit mental state to talk to him at the time; I

was severely brainfogged after the long gruelling trip to get there.

My GP has referred me (after I worked it all out for myself first and

then asked her to refer me) to an endocrine(?) consultant appointment-

soon I hope- for tests looking for insulin resistance and reactive

hypoglycemea;

Its a real struggle trying to work these things out for myself with

all my cognitive difficulties and having such limited medical

knowledge (dental nursing examinations are not exactly medical

degrees)

I wish my GP would be really helpful and start figuring some of these

things out FOR me-I mean the hot coffee by the bed idea is very

useful; with my brainfog it could have taken me years to make that

connection (except she should know that I cant touch caffeine), but

then she just told me that there werent any drugs available to help

with the problem and left it at that.

If I can find connections EVEN with my brainfog; I am thinking that

if only she would put her sharp fog-less brain to work for me for an

hour or so I am sure she could make some VERY useful suggestions- but

I suppose that doing something like that is way beyond the call of

duty for an NHS gp?

Since I last spoke to her I have now encountered Richie Shoemakers

articles where there is a lot of talk about neurotoxins, cytokenes

and hormones; it sounds like its right in our territory I think.

I may have misunderstood but it seemed that neurotoxins (like

mercury!) as we know can cause the overproduction of cytokenes; and

these circulating in our blood somehow interfere with our bodies

reception of hormones. It sounds to me like the messages are being

sent out ok; but because of the cytokenes in the blood they cant be

interpreted.

I got the idea that the hypothalamus simply cant receive the hormones

in our blood that are being put there to tell us we have eaten

enough, which would explain why I either cant seem to get enough to

eat, or just as often I dont know that I am hungry until I hear my

stomach growling!

Does the hypothalamus regulate sleep by its own manufacture of

melatonin; or does it receive the melatonin as a signal to the body

to sleep????

some of Richie shoemakers information sounds quite similar to what

you said about 'blocks' for hormones being sent to the thyroid, too;

and looks like a rather different situation altogether to the

hypothalamus malfunctioning in itself; well, I think so anyway?

I think that sounds like a completely different theory to your low

cardiac output one, so now I am even more confused; I will give that

one more thought and read up on it though-

you think it could be a combination of the two, you say?

I have also read that prescription narcotics can interfere with the

bodies thermal regulation too; I suspect that 1g co-codamol x four

times a day would qualify?

Do you know, if both those theories you mentioned would account for

the occurrance of both the hpothermia and the hyperthermia symptoms

as well, please?

I really hope that my ME consultant knows something about this when I

talk to him.

anyway, I hope these brainfogged ramblings of mine make some sense!

thanks again

all the best

yvonne

> >

> > Hi I am not Rosie,

> >

> > But I do suffer from thermal dysregulation symptoms so you might

> be

> > interested.

> >

May 26, 2006

Hi ,

Just jumping in here; I did mention in another post that I have tried

vit D supplementation - not for the temperature per se, but for ME in

general. I couldn't tolerate any forms of it unfortunately. I would