Fatigue and ITP

I am a 72 year old man whose ITP counts are current around 20. My major problem right now is extreme fatigue and I am "in discussion" with a UK haematologist who says she knows of no mechanism by which ITP and fatigue are linked!

I see that the PDSA ITP Conference 2011 featured a presentation entitled "Why am I so tired" Can anyone tell me how to get sight of this.

thanks Roger

Your haematologist needs educating.. LOL.

But here's a slide presentation that was given at the UK ITP Association's convention in 2011. This woman was brilliant and made me feel so much better about feeling exhausted with low counts. I thnk being taken seriously was enough to make me feel better.

www.itpsupport.org.uk/conventionppt/showjulianewton2011.htm

The abstract of her report is at.. onlinelibrary.wiley.com/doi/10.1111/j.1600-0609.2011.01587.x/abstract I have the report but shouldn't post it here as it was given to me by the author for my own use.

Thank you so much Ann, you're right being taken seriously is a good start.

I have followed the links and will offer them to my Haematalogist. It will interesting to see how my relationship with this particular Haematologist works out.

At present (and for many years) I am under her "watch and wait" routine and she seems reluctant to go further. I must admit that even if I convince her that there (a) is a link and (b) it applies to me then it's not easy to see the best treatment option for me.

rgds Roger

Fatigue was an issue for me when counts were low. I also had low Iron and testosterone levels. Was prescribed a Testosterone patch and Ferrous Sulfate (for low iron).
Not everyone experiences fatigue with low counts, but it can be an issue for some with low counts. Have you ever had those levels checked?

Thanks for the post Dean. I am trying to see if there might be any other reason for my fatigue. I have had a full set of blood tests done here in the UK (with no other problem detected) so I guess that would have shown up an iron deficiency? But would it have shown the testosterone as well? I will mention it to my GP (Doctor) next time I see him.

And it also occurs to me that my fatigue might be less of a problem than some of the side effect associated with various ITP treatments!

Meanwhile I am upping my (low) intake of green vegetables (for Vit K) and have just started on a Vit B Complex supplement maybe I will see some improvement from these.

BTW did your Testosterone Patch and Ferrous Sulfate actually restore your energy levels?

many thanks Roger

Roger S wrote: And it also occurs to me that my fatigue might be less of a problem than some of the side effect associated with various ITP treatments!

So you hit the nail firmly on the head. I need counts over 100 to banish the fatigue but the drugs that take my count that high have horrible side effects that I can't cope with, so I use a drug that gives me a lower but safe count and cope with the fatigue instead.

Today I heard from my Haematologist and, after reading the refs I provided for her, she now accepts that my fatigue might very well be linked to my ITP. So that's a good result. Thanks PDSA. She is suggesting prednisolone but I am thinking it over carefully because if I can relieve the fatigue problem some other way it would seem a better. Any further suggestions most welcome and I will report results here. thanks all Roger

Is she suggesting the prednisolone for the ITP or the fatigue?

Roger S wrote: Thanks for the post Dean. I am trying to see if there might be any other reason for my fatigue. I have had a full set of blood tests done here in the UK (with no other problem detected) so I guess that would have shown up an iron deficiency? But would it have shown the testosterone as well? I will mention it to my GP (Doctor) next time I see him.

And it also occurs to me that my fatigue might be less of a problem than some of the side effect associated with various ITP treatments!

Meanwhile I am upping my (low) intake of green vegetables (for Vit K) and have just started on a Vit B Complex supplement maybe I will see some improvement from these.

BTW did your Testosterone Patch and Ferrous Sulfate actually restore your energy levels?

many thanks Roger

When I have had blood work done, the Iron test is a seperate test here. It does not show up on regular blood work. So did they actually do an Iron test? I have also been told that there can be issues with Iron binding and Iron absorbtion. Yes side affects of medication can be worse than symptoms of ITP. It never hurts to eat healthy. I could sure do better at it.
Testosterone levels generally decrease with age. The main issues with low T is decrease sexual function/desire, not fatigue. So low T really has nothing to do with fatigue. Sorry for the mistake. I think the combination of normal counts and Iron levels restored my energy. I still have bouts of low energy but that may be due to working nights and not enough sleep. I also take a Vit B-12 supplement, along with a Multi vit and vit C.
Good Luck Roger

KittieG wrote: Is she suggesting the prednisolone for the ITP or the fatigue?

For the ITP primarily. Although I feel pretty sure that being a steroid it would boost energy as well. But I'm in no hurry to go that route due to potential side effects. thanks for your interest Roger

Dean wrote:

Roger S wrote: Thanks for the post Dean. I am trying to see if there might be any other reason for my fatigue. I have had a full set of blood tests done here in the UK (with no other problem detected) so I guess that would have shown up an iron deficiency? But would it have shown the testosterone as well? I will mention it to my GP (Doctor) next time I see him.

And it also occurs to me that my fatigue might be less of a problem than some of the side effect associated with various ITP treatments!

Meanwhile I am upping my (low) intake of green vegetables (for Vit K) and have just started on a Vit B Complex supplement maybe I will see some improvement from these.

BTW did your Testosterone Patch and Ferrous Sulfate actually restore your energy levels?

many thanks Roger

When I have had blood work done, the Iron test is a seperate test here. It does not show up on regular blood work. So did they actually do an Iron test? I have also been told that there can be issues with Iron binding and Iron absorbtion. Yes side affects of medication can be worse than symptoms of ITP. It never hurts to eat healthy. I could sure do better at it.
Testosterone levels generally decrease with age. The main issues with low T is decrease sexual function/desire, not fatigue. So low T really has nothing to do with fatigue. Sorry for the mistake. I think the combination of normal counts and Iron levels restored my energy. I still have bouts of low energy but that may be due to working nights and not enough sleep. I also take a Vit B-12 supplement, along with a Multi vit and vit C.
Good Luck Roger

OK Dean . . . got the message . . . next visit will talk to Doc about getting that Iron test.

The test you want is a ferritin test. It measures the store of iron rather than the iron that's being used in the blood which is the haemoglobin. If the haemoglobin is good, and they will have checked that, then they probably won't worry about the ferritin.

When I was on mycophenolate my ferritin went low, it was about 10 which is low for ferritin. I just took a normal multivitamin with iron tablet each day and ferritin levels went up to 50 something quite quickly so I stopped taking it. If you take big doses of iron most of it will just be excreted and it is likely also to cause problems in the digestive department so best not to overdo it.

Thanks a lot Ann . . . . Roger

For some reason, I continue to have fatigue even with higher platelets. I think it was due to the agressive Decadron treatment that I had two years ago. But, I can live with it.

Dee Dee

DeeDee what sort of counts do you have fatigue. I get tired when my count is anywhere from 100. I've got used to it now and just pace myself and don't plan to do too much in a day.

Ann, I havn't been tested for a year. I go in to be tested around Nov. 6. But, I've been battling fatigue ever since my last episode of ITP in July 2010. It has sort of changed my life style as I make myself rest more when I feel really tired. (I know that one year is a long time to go without being tested--but, part of me felt good about it). Also, my ITP came on very, very quickly--like in one day. I went all the way to 1 in about two days.

Before I got sick in 2010, I would force myself to do things, even when I was very tired. I felt like pushing myself too much might have brought on my last episode of ITP; also, my doctor had mentioned that he felt the stress brought on the bouts of ITP.

Sorry, Ann, I forgot to mention that one year ago my counts were over 300,000--and I still had fatigue. I really think the high doses of Decadron over a period of 8 weeks might have brought it on.