ITP and Feeling the Cold

[AnthonyHeard]

We have had numerous comments from followers suggesting that ITP sufferers feel the cold considerably more than non - ITP sufferers. So we put this to some of the ITP Support Association medical panel to see what they thought. Well .....the general opinion is that there is NO DIRECT link between having ITP/low platelets and feeling the cold any more than for those who don't have ITP. BUT.... There is an INDIRECT reason why we ITP folk might well feel the cold more than other people. As we all know us ITP folk often feel fatigued, and also we often suffer from poor/interrupted sleep. If we are on Prednisolone or other immune suppressants they are likely to interfere with our sleep patterns, often quite severely . Poor quality sleep is one of the main contributors to us feeling the cold. So it is very likely that poor sleep that we ITP folk suffer from due to some of our treatments could well be a determining factor. All very interesting.

BUT do remember that there may be other factors which make people feel the cold more than others such as Hyperthyroidism, Anaemia, Anorexia, Dehydration and other conditions, so always discuss any issues with your doctor, specialist, medical advisor.

[sailor]

Very interesting. I am 71, had ITP for 20+ years and on no meds, steady count of 10 for last 10+ years but I do feel the cold. I put the pullover on and wife takes hers off. C'est la vie.

The medics, bless them, do not always get it right !!!

[purplecaz]

I have ITP with a count always around 40-50.  I've never been on any Medstead but do suffer badly from fatigue and feeling the cold.   Apart from when in shower my feet never seem to defrost !!!! Not nice.  Be interesting to see other comments on this.  I've mentioned it to my gp several times but can find no explanation.

[22-patience]

I am one ITP'er who is always warm. Very strange. I am taking PROMACTA (eltrombopag) and not only do I feel hot all of the time I have extremely swollen ankles and legs. I weigh 126 in the morning and by noon I weigh 131. I have asked my doctor for some kind of diuretic but she has denied it for me. Pretty frustrating. It hurts with every step. She told me to elevate my feet but who wants to lie around all day with their feet in the air???? Not I.  Has anyone taken this drug with the same effects? Thanks for feedback.

[Metalgod in reply to 22-patience]

I was told to elevate my feet to same position as heart for better flow ?? So basically laying down like in bed crazy but they found a narrowing in one of the veins in my leg and put me on blood thinner which helps but still gets swollen

[Vivante]

A  person who suffers from an underactive thyroid feels the cold a little more than others. There is also another condition, it is Reynauds, that can be painful.

[Morgan]

Prior to diagnosis many years ago I was always a hot person but now I am always cold and my hands go numb when cold.  I take no medication and surely as our blood is thinner we would feel the cold more.  It wasn't that long ago the medics said our fatigue was imagined !!

[Milane]

I also have anemia with itp, I'm often cold & double up clothing. I even get sick with colds or flu too. thanks 

[sharroN42]

I have ITP, feel the cold, have type O blood, and sleep very well for 8 to 9 hours (with the occasional getting up to pee) once I do go to bed. I usually stay up late.

[sharroN42]

I also get colds easily.

[Ab36]

My son has had itp for the last 7 months and gets tired all of a sudden. He also feels the cold much more than he used to. Always wearing an extra layer.

[Doris61]

Yes very interesting I am 61 years young. I have had ITP for about 10 years as well. No meds the lowest my ITP has gone is 65,000. BUT I do get Iron infusions because I do have chronic fatigue. I have worked very hard all my life with big jobs and was always tired. I managed buses all kinds of buses. 200 school buses, 70 Para transit buses, Mass transit and finely I had to slow down and now I have an 8 hour a day job. AND even with slowing down I struggle to stay healthy and feel well. Tired all the time!!!

[Metalgod]

I thought it was my itp making me feel the cold more this year but after talking with various consultants they seem to agree it could be the effects of long covid as had it in March 2020 and also my type 2 diabetes but not itp