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I'm a newbie here! 4 years 10 months ago #62411

  • AnnaM
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Hi everyone! Here's my getting-to-know-you post:

I'm new here, and I've been reading around a little, learning a lot, it turns out! I've had low platelets, well maybe all my life. My first blood test was at around 14 years old, and my platelets were about 100K. They've been falling steadily ever since then, but not dramatically. 19 years later I'm at around 50K, with some dips below, at 40K (and some ups whenever I'm sick). I'm very lucky to never have been on medication, although my haematologist makes me keep prednisone on hand. I'm hoping it stays that way! I have two daughters, delivered with no problems, although no epidural was no picnic…
I was looking around the internet for a support group, because I don't have many people to talk to. My parents have been following the disease with some disinterest from the beginning, but nothing really ever happens, so… And I've been with my husband 10 years, so he doesn't think much of me going to have my blood drawn every month (or more when my count falls below 50K), and I feel a little alone.
Besides sometimes impressive bruising I don't have any visible symptoms. The thing is, I feel really tired all the time, even when I sleep well, and I think nobody really believes me on this or that it could be linked to the ITP, except maybe my doctor?
My last blood work also revealed low red cells. It's nothing serious (10g/dL), but it might also explain the fatigue, and it's another thing to keep an eye on.
I guess I might be feeling a tiny bit isolated. I've learned to live with all this a long time ago, and I know I'm lucky, but it would be very nice to share with people who understand. :)

Anna

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I'm a newbie here! 4 years 10 months ago #62413

  • Hal9000
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Hi Anna. I suspect I've had low counts most of my life too because of easy bruising. No proof though.
On the Prednisone, you've had it before to know that it works for you?

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I'm a newbie here! 4 years 10 months ago #62414

  • AnnaM
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No, I’ve never taken it. My doctor(s) suggested it once or twice (my counts were lower when pregnant), but I asked to wait a few days (I’ve been on prednisone before for other health issues and hated it) and thankfully they went back to safe levels by themselves. My hemato still prescribed some to me because that’s the first thing they’ll want to try if my count goes too low anyway (unless it’s so bad I have to be hospitalised I guess). I don’t really know, I didn’t question it: it’s sitting in my medicine cabinet.
Does it not work for you?

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I'm a newbie here! 4 years 10 months ago #62415

  • momto3boys
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Welcome Anna,

We are glad to have you aboard. Feel free to post any concerns or issues that you may have. Lots of people read here with lots of different experiences that they can contribute.

It's wonderful that you have never required treatment and it sounds like you have a reasonable hematologist. Some people come here trying to manage all kinds of treatments because of overzealous hematologists and it turns out that they have counts that are plenty high to not require treatment. Anything above 30K is considered safe for daily living barring any other bleeding or significant symptoms. It sounds like just continuing on without treatment is your best course of action. If it ain't broke don't fix it!

Regarding the exhaustion, it is true that some people with ITP also have complaints about exhaustion accompanying the condition. However, I would look further into your iron and hemoglobin levels. If you are anemic, that is what I would worry about treating to improve your engergy. There is a HUGE difference between how you feel with a hemoglobin number of 10 versus 12. It doesn't sound like much, but it is night and day in terms of energy for living day to day.

It may be the case that as your counts have dropped somewhat as you have aged that you are losing slightly more blood every month with your cycle. Over time this can lead to problems with anemia. Certainly start looking into over the counter supplementation for your iron if you are indeed low. They can also do iron infusions to get a leg up on things if you are more significantly anemic because oral supplementation takes a while to kick in and really increase your levels.

Lucky for you, anemia and potential iron infusions are managed by hematologists, so you can just make an appointment with your current doctor and make it clear that you want to get a full iron test (including ferritin levels). Hopefully addressing any deficiencies in that regard will help a lot with your energy.

Another thing to check for energy after iron might be thyroid levels. Issues with hypothyroidism can also affect energy levels. A general physical (if you don't do them regularly) is a good idea. It could be that your ITP does affect your energy, but I would check everything else first. Not everyone with ITP also has energy issues, so it's good to investigate further.
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I'm a newbie here! 4 years 10 months ago #62417

  • AnnaM
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Thank you so much for the detailed answer!
I am very happy with my doctor, yes, esp. the one I’m seeing since I moved 3 years ago.
She does think the anemia is due to low iron, which I agree, is prob. due to increased blood loss. She makes me do a complete blood work every year, which is how she detected low RBCs, and I’ve been taking iron supplements she prescribed. I’m doing another blood test in about 2 weeks so we’ll see if it’s making a difference.
No issues with my thyroids levels thankfully.
The thing with exhaustion is that it was happening before my iron/hemoglobin got low, so I’m not sure it’s entirely linked, though it almost certainly explains some of it today.
I saw on the FAQs that it could maybe have to do with the role of platelets in distributing serotonin? Are there any good articles on this (I couldn’t find any)?
I understand that not everybody feels necessarily tired by ITP?

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I'm a newbie here! 4 years 10 months ago #62420

  • Hal9000
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Right, that is kinda the reason why I asked about Prednisone. If you had an issue and took Prednisone and it did nothing that might really freak you out. If I remember my numbers right, for new patients there is about a 60% chance that it will help. IVIG is a bit higher, about 85%. On a related note, if you go to an ER with a platelet/bleeding issue and you've never been treated before normally they'll give you both Prednisone and IVIG.

I've done a 'Dexamethasone 4 day pulse' before but no Prednisone. Dex is something like 6 times more powerful. On the test three or four days after the pulse my counts were essentially baseline. So I had no clinically useful response at all.
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I'm a newbie here! 4 years 10 months ago #62421

  • TerriC14
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Hi Anna - my daughter has ITP and is currently in remission after taking Promacta. She is has been off medication now for a little over a year and is not having any problems.

Her major symptom was fatigue - "always being tired". She was diagnosed at 16 with counts in the 40 range. I am quite sure she had low counts for at least a year before that. The lower her counts were the more fatigued she became. I can honestly say that I was frustrated with her until I realized how pronounced her exhaustion was. With very low counts - under 5 - she had massive bruising but thankfully not a lot of bleeding symptoms but her energy level was non existent. It was like she moved in a fog. After treatment platelets up and she is a totally different person.
Her hematologist said that he feels the fatigue is part of the autoimmune process and a real quality of life issue for some patients. He has parents that can predict count drops and bring the children for labwork based more on fatigue than bleeding symptoms. He did say early in his career he was a little dismissive of the complaints of fatigue if the children weren't anemic as well but over time and experience saw it as a valid and real symptom which patients experienced in varying degrees.
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I'm a newbie here! 4 years 10 months ago #62422

  • AnnaM
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Thank you for sharing that Terri. It can't have been easy going through this for either her or you. (I know I'm bitting my nails every time I have to take one of my daughters to the doctor's…)
It's validating to hear the opinion of her haematologist, because people are often dismissive of fatigue as a symptom, and I can sometimes end up doubting myself. The thing that always brings me back to it being a symptom is that no amount of sleep seems to relieve it. This week in particular I'm feeling exhausted, and it's hard to carry on as if nothing was wrong. Let's just hope it's mainly the anaemia, and that alleviating it will give me a boost.

I'm really glad to hear that your daughter is in remission and doing well :)

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I'm a newbie here! 4 years 10 months ago #62429

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Anna
Tiredness is the most annoying aspect of ITP as far as I'm concerned. I sometimes get hit by waves of fatigue where the only thing I can do is sit down and wait for them to pass.

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I'm a newbie here! 4 years 10 months ago #62438

  • AnnaM
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Hey Mrsb, thanks for sharing. It's good to know I'm probably not being crazy, although I'm sorry to read this is hitting you hard. Hope you regain some energy in the future.

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