ITP & depression

Hiya everyone, just wondering how you all cope with the anxiety & depression.

As for me I'm sitting at 42 lowest ever has been 34. Covered in bruises at the moment but that's part and parcel with it all.

I'm not really a bleeder so to speak but do have a few nosebleeds now and again when they get lower.

I absolutely dread my hospital appointments when they come around every 4 months. I find i sit in the waiting room and talk to myself "please don't let them be lower please".

I find this really gets me down and the more research I do the harder it is to deal with this all.

Id say 5 days out of 7 I sit on my own and get so upset about it all. And find it really hard to talk about this with anyone. Even my parents or my fiance of 4 years.

I feel like they don't understand and don't take it seriously.

I have been wanting to try st John's wart a supposed mood lifter. And am wondering what any of you take to try and lift your mood or just take the weight off for a while.

All reply welcome.

Fellow IT sufferer.

10 Replies

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  • Hi there. WE all have these times and ask 'WHY' or WHAT NEXT' and talking to somebody is often very hard however close they may be. It is easy to say but I have found the only way is to say to myself 'OK I've got it. I'm not a bleeder. I know how to handle the condition when it gets bad or should I start bleeding. Just get on with my life and enjoy it'.

    By the way, my count has been 10 for around 12 years with no medication and only yearly visits to the clinic. This has been far better than sitting in a waiting room and worrying what my count is going to be. I think we all know when our count drops almost instinctively.

    You are obviously a young women with your whole life ahead of you so be brave, take a hold and get on and enjoy it.

  • Platelets are a way that the body stores serotonin which is a neurotransmitter, the lack of which can cause depression.

    I have had ITP for 22 years now, and my platelets have fallen from about 60-80 to the 20-40 range. Lowest I've had is 19. I have no meds for it.

    I don't think about the fact I have it, except when I'm really tired. There are far worse things I could have, and I've had friends die of cancer in the last couple of years and they had kids the same age as mine.

    The count is just a number, you need to concentrate on how you feel. I've felt fine with a count of 19, and on the floor with a count of 50. There are other things that make you feel lousy too. Last year in the space of 6 weeks I got shingles, followed by a stinking cold, and then found I had really low levels of vitamin D. The doc gave me three months worth of vitamin D3, and I felt so much better. I now take Vit D3 every day. The problem then wasn't the ITP, but my immune system taking a battering, and the Vitamin D levels were a huge factor. I'd get yours checked, as low levels make you feel really tired and washed out.

    The advice I've been given by both Belgian and UK docs is that they won't treat me until my count is <10, or I am bleeding everywhere. I just get bloods done every six months.

    I think the issue for those around you is that they can't see you have this, as there are not really any obvious effects. My sister in law has an auto immune disease that affects her eyes, so driving, reading etc is hard. My brother commented to me that I didn't know what it was like to live with an auto immune disease, at which point, I nearly punched him, as I'd had ITP for 17 years by then.

    As to how you cope, when I was diagnosed I was pregnant, and the ITP took a back seat to dealing giving birth and a new baby, and has stayed there really. It's just something I have, like others have diabetes for example.

    I think (and I don't mean this horribly), you need to step away from the research, get a grip, and get on with your life. Since I was diagnosed, I've changed career, taught secondary school full time for five years, moved abroad, travelled in Europe, been to Canada, I drive to and from the UK regularly. The ITP affects you mentally as much as you let it. The Prime Minister has Type 1 Diabetes, which is auto immune. I don't see her letting it dictate what she does. Qq

    I saw a comment once from someone with cancer. Her take wasn't that she had cancer, but that cancer had her. I use that when I need to. Don't let having ITP rule your life or define you. You are still the same person you were before you found out you had it.

    Good luck...get out and go for a walk, go away for a weekend with your fiance, eat chocolate, laugh, and leave Dr Google alone for a long while, you'll feel better for it, honest.

  • Good advice!

  • Thank you so much!!!!!

  • No bother. I had delayed and severe PND, and was on happy pills for a bit, so I've been depressed and anxious and can relate to how you feel. I think how you choose to approach life is a big part of how you deal with ITP. I know I have it, but I can't do anything about it, so I opt to enjoy life. I am not debilitated by ITP, it doesn't restrict me apart from not drinking much alcohol, and I don't play rugby or go skiing anyway, so as long as I pace myself, and don't drink too much, I am generally OK.

    Promise you'll get your Vit D levels checked at your next blood test? Sorting mine out made a massive difference to me.

  • Yeah my next appointment Is in Aug and I've already wrote on the letter vit d levels. Xx

  • Go and see your GP and get them to test for it. It was my GP that picked it up, not the Haematologists.

  • ITP is a strange condition which seems to affect us all differently. It's no wonder sufferers get anxiety and depression. In my case I went to the doctor with a couple of bruises but otherwise feeling 100% ok, 6 hours later I was admitted to hospital with a count of 2 and being told I was a ticking time bomb and was at high risk of internal bleeding, stroke or brain hemorrhage. It took about 4 months before I had a treatment that kept my platelets at a safe level and I came to the realisation that there are a lot worse conditions than ITP.

    Anxiety and depression are probably worse conditions than ITP. I know it's easy to say but dont let your ITP be the focus of your life, if you do anxiety and depression will take over your life. Talk to your doctor and your family, remember the things you enjoyed before ITP and give them a go.

    I now just get on with my life and do all the things I enjoy and have always done. I am retired and am determined not to let ITP rob me of an active retirement. I get a daily reminder of my ITP only when I have to take my Eltrombopag tablet and have a sigh of relief after each of my regular blood tests.

  • Hi gflaxton. I think there may be a lot of people out there that have felt the same as you at some stage. I know I have. That is why I come here. I don't know anyone around me who has Itp. It's not something that is visible and I find that people just don't get it. Sometimes it's nice to know that when you're just feeling down or poorly there are people out there that know what you are talking about. That you're not going crazy and that feeling down or depressed can be a side effect of Itp. Once you know this, it can get easier to take control. Take control of the things you have influence over, diet, excercise, etc. Think of your appointments as a safety net. Your body is the best indicator of what is going on. Most Itp people seem to carry on relatively normal until readings go under 10. I have been so lucky in that my levels have never dropped enough to need treatment and I am so grateful for that. One thing I've learned on here is that everyone's Itp affects them differently... that is why it's so difficult to understand. Some research may apply to you, or it may not. Please do not take all research as an absolute.

    It sounds like you are really down at the moment so maybe a trip to the gp would be ideal. You may be low in other things (vitamin d, iron, etc) which may also effect your mood and energy level, but can be rectified. Also, I recommend speaking to gp before taking supplements as some can influence platelet levels or blood clotting. I usually make changes in diet, exercise around a month or so before routine blood tests. It can be reassuring to know what you are doing is not lowering the count.

    Sailor and scaryteacher have good advice. It seems they are getting on with living life and Itp is just a part of that. As a mum of two, I'd say just carry on as normal and be aware of the signs but don't let Itp dictate everything you do... I wouldn't recommend boxing as a career... but there is still a lot you can do ;)

    When you're tired have a nap, when your down treat yourself to chocolate or a shopping trip. Love life... Itp is just a small part of the big picture.

    I wish you well and good platelet counts.

  • Hi gflaxton01, are you aware that platelets play a role in transport of the neurotransmitter serotonin which is responsible mood changes, the lower your count the lower the serotonin level and increased risk of depression. We can't take antidepressants as they have a negative effect on platelet function. We are left meditation or CBT (cognitive behavioral therapy) which is as effective as antidepressants after 6 months of treatment and a very popular treatment in the U.K., you should try it, it will help. Let me know how it work with you. Kyriak51:)))

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