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very low energy

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10 years 2 months ago #50444 by porqupine
very low energy was created by porqupine
I have very low energy and my count is 13 it has been like that for 8 years.Is there anything that might help to boost my energy
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10 years 2 months ago #50448 by TerriC14
Replied by TerriC14 on topic very low energy
I am really sorry - for my daughter fatigue was also her major problem. With low counts she was really dragging and low energy. She spend the winter sub 5 and the fatigue was overwhelming. I really felt bad for her, it had to be awful to feel that way. She is on Promacta now and the change is amazing.

I would stress the basics: healthy diet, plenty of fluids, rest exercise. But I know when my daughter would exercise it would totally wipe her out. Hopefully someone else will have better advice.
The following user(s) said Thank You: porqupine
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 2 months ago #50450 by Sandi
Replied by Sandi on topic very low energy
Other than treating to get counts up, there isn't much you can do. You could get checked for other problems like thyroid or vitamin deficiencies. Many people with ITP tend to have those sorts of things going on.

Eat well and try to stay active. The more you lay around, the more muscles atrophy and fatigue just gets worse. It's very hard to build back up after years of that.
The following user(s) said Thank You: porqupine, tkine
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10 years 2 months ago - 10 years 2 months ago #50462 by porqupine
Replied by porqupine on topic very low energy
i am on the treadmill every day for 43 minutes and 4.3 mph incline of 8 i try to eat well. i just cant shake this fatigue. i have no cardiologist or hematologist and my gp is not worried about my counts
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 2 months ago - 10 years 2 months ago #50463 by Sandi
Replied by Sandi on topic very low energy
Well, walking on the treadmill is great! Keep it up.

There are many things that can cause fatigue. Maybe your GP could look into it.
The following user(s) said Thank You: porqupine
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10 years 2 months ago #50476 by Margaret k
Replied by Margaret k on topic very low energy
If your count is only 13 you will have fatigue no matter what you eat or do. I am always very tired when I am low, below 20. At 13 you should be having treatment. H In the Uk you would be treated. My haematologist likes me to be between 30 and 50 and at present I am getting Romiplostin injections weekly which have increased my count from 7 to 32 in 4 weeks. It is not safe to travel by plane if you have a count below 20 and in general you will be very prone to bruising and at risk of nosebleeds at 13. Why do you not have a haematologist?
The following user(s) said Thank You: porqupine
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 2 months ago #50483 by Sandi
Replied by Sandi on topic very low energy
Not everyone with low counts feels fatigued. I'd guess about half of the people who have had low counts have said that they feel just fine below 20k. I was one of the ones who did feel fatigue, so I can relate.

However, I think too often we assume that ITP is the cause and because of that, other problems may be overlooked. Many people with ITP seem to have other health issues and if someone feels bad, the symptoms should be explored.

Some people choose to treat only when they have symptoms, regardless of the count. Porqupine, I don't know why you are not treating, but you could probably do something to change that.
The following user(s) said Thank You: porqupine
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10 years 2 months ago #50493 by porqupine
Replied by porqupine on topic very low energy
Thank you Margaret k and Sandi my cardiologist said i had itp before my heart attack that it was not the plavix,cumadin,heprin i was on at the same time. i have talked to my gp about my fatigue with no response that's why i have been untreated for 8 years
10 years 2 months ago #50495 by
Replied by on topic very low energy
porqupine you still have your cardiologist right?

Could your fatigue be due to a medication you are taking?

Some ITPers are tired/fatigued with a low count some are not - I never have been.

I'm curious too why you don't have a hematologist with your count being that low. Are you afraid to treat because you had a heart attack?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 2 months ago #50498 by Sandi
Replied by Sandi on topic very low energy
Porqupine - it doesn't matter what caused ITP...people still treat if they have low counts. A GP shouldn't really be the one to decide if ITP treatment is needed or not, you'd need a Hematologist.

If you are going through life not feeling right, you have to get yourself a better team of doctors. Fire that GP who seems useless and get another one.
The following user(s) said Thank You: porqupine
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10 years 2 months ago #50503 by porqupine
Replied by porqupine on topic very low energy
My GP is very useless it is hard to get another in Canada no referral no hemo no cardi either . i am not on any medication. my good GP retired and now i have this one he took over his practice
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 2 months ago #50504 by Sandi
Replied by Sandi on topic very low energy
Well, I'd say give it a shot and try. I have no idea what you'd have to do to get another GP, but seems as though you are falling through the cracks.
The following user(s) said Thank You: porqupine
10 years 2 months ago - 10 years 2 months ago #50505 by
Replied by on topic very low energy
You have had a heart attack - you had a cardiologist after that right? Why do you not still have a cardiologist.

I know things are different in Canada but can't you request to see a hematologist with your count being 13k? You have no symptoms [bleeding-type] that would warrant your GP to send you to a hematologist - is that why?

You need to have someone in this group who is in your same area of Canada to help you out with how to get a hematologist.


PS - were you put on any medication when you had your heart attack? Were you given guidance about nutrition? Is your cholesterol being tested on a schedule? I'm more worried about your heart attack :)
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10 years 2 months ago #50506 by Margaret k
Replied by Margaret k on topic very low energy
I can't believe the poor care you have received in Canada. When I first showed a count of 42 on a routine blood test 3 years ago my GP sent me straight to the hospital Hema dept where investigations started .When I turned in a count of 7 two months ago my GP phoned me and told me to to to straight to hospital where an observation bed was waiting for me. He leaves my care completely to the hospital apart from having his nurse take my counts the day before I have a hospital appointment which at present I have weekly. You must find a way to get a referral to a hema Dept to access treatment. When I was low I was most tired when walking uphill and in fact felt quite dizzy then so I can see that walking uphill on a treadmill must be making you tired and may not be doing you any good. Going for a real walk on the flat might be better.
The following user(s) said Thank You: porqupine
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10 years 2 months ago #50509 by Kharys
Replied by Kharys on topic very low energy
I understand, my counts are almost always in the teens and I go through periods of unbelievable fatigue. I just started trying B12 shot. This was my first month and it seemed to help.
The following user(s) said Thank You: porqupine
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10 years 2 months ago #50518 by porqupine
Replied by porqupine on topic very low energy
my cardiologist when back to work at the hospital after i had him for 7 years and no referral. And no i am not on any medication.I have bruising but no bleeding
10 years 2 months ago #50519 by
Replied by on topic very low energy
Bruising is bleeding.

You are on no medication due to your heart attack?
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10 years 2 months ago #50521 by porqupine
Replied by porqupine on topic very low energy
yes none. i was on lipitor 80 mg and others but none now
10 years 2 months ago #50523 by
Replied by on topic very low energy
Like I said - I'm more worried about your heart attack.

Why would they take you off Lipitor? Anyone I know here who has had a heart attack is put on a statin, beta blocker and has blood work regularly to check their cholesterol.

Is it possible that your fatigue is due to your heart and not ITP?

(I'm a hockey fan too :) )
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10 years 2 months ago #50530 by porqupine
Replied by porqupine on topic very low energy
my gp took me off and said he is not to worried about my itp or my heart he is the worst gp that i know. i have asked him about referring me to another cardiologist or a hemo no answer
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10 years 2 months ago #50535 by Winnifred
Replied by Winnifred on topic very low energy
You need to book an appointment with your doctor and say I want a referral to a hematologist and to a cardiologist. If your family doctor won't than say tell him/ her you will be getting a new family doctor.


I am curious what your doctor said was the reason for taking you off the Lipitor?
The following user(s) said Thank You: porqupine
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10 years 2 months ago #50537 by CindyL
Replied by CindyL on topic very low energy
Porqupine, where are you in Canada? I'm in NB and when I was first diagnosed, I had no problem getting my family doctor to give me a referral for a second opinion. I got an appointment with a doctor in Moncton and spent an hour and a half with him on a Saturday. When I was on a high dose of pred, I was having heart palpitations and was sent to a cardiologist right away.

Our health care system is usually pretty good, but in this case, I think you need a new doctor!
10 years 2 months ago - 10 years 2 months ago #50543 by
Replied by on topic very low energy
Thank you Julia and Cindy - knew someone from Canada would see this eventually and chime in.

I wasn't sure if this GP had to be stayed with or if a new one could be found.

And I'm glad some others are concerned about the heart attack!! No doctor should take a heart attack patient off of a statin or beta blocker without a dang good reason!!

I'm not telling you what to do porqupine - but I got a new GP for this very reason, him not caring about his patient or sticking up for me.

You do need a hematologist with the count you have and you do need a cardiologist because of the heart attack you had. I'd be concerned that the fatigue has something to do with my heart and want to be seen promptly by a cardiologist.

You are #1, take care of yourself!
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10 years 2 months ago - 10 years 2 months ago #50548 by porqupine
Replied by porqupine on topic very low energy
i am in Ontario and it is very hard just to get a doctor. if i tell him i want a new doctor he will say goodbye. its not that easy to get a doctor where i live. i went 6 years without one .my care in the hospital for my heart was very poor to say the least and has not gotten any better. i had a very good GP but he retired. that's why i look after myself. And thank you for your concern
10 years 2 months ago #50572 by
Replied by on topic very low energy
Why would you have to tell him you want a new doctor?

Take care now!
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