Help just found out I have low platelets

[Lynwoodley]

I have only just found this site as I have just been told I have low platelets between 33-44 at moment and so don't really know anything about it yet. I get very tired all the time and get what I call hot heads, and hot flushes (not menopausal ones) I also find my short term memory is really bad are these symptoms anything to do with it. Can somebody tell me what causes it any symptoms and what can be done to help it please

[Maryedwards]

I had the same problem and I had itp and they put me on steroids but so far I've been in remission for almost 3 years now

[sailor]

Hi Lynwoodley. First advice is don't panic. Many people have ITP with a much lower platelet count and live a normal life. I have lived for over 15 years with a count of 10 very happily, travelled abroad and have only just retired at 71. ITP is caused often by a virus affecting the immune system hence the name immune thrombocytopenia purpora. In this case the immune system sees the platelet as an enemy to the body and attacks and destroys it. There is an old remedy of having the spleen removed but this is not now a common practice as there is no certainty that it will work. It is however often suggested by haematologists who are not really upto speed with ITP. Medication is a starter and can vary from steroids to TPO drugs which are reserved for more chronic cases. Some drugs will work for one and not another. Steroids are the usual first course, but you do not want to take these for long due to the side effects.

I suggest you look at the ITP web site and join the Association, see above. There is more excellent advice there and it will tell you where the ITP specialist centers are around the UK. It will also give you general help and advice as to the medications available. They also hold an annual convention, this year in September in Wiltshire, where you can meet and talk to ITP specialist as well as listen to their talks.

I am sorry to say fatigue is a symptom as to the hots, being male I couldn't possibly comment!

Good luck, don't worry and try to live as near normal a life as possible.

[Lynwoodley in reply to sailor]

Hi Sailor thanks for the reply it's very helpful I will definitely check it out, luckily I have private healthcare so hopefully I will get the specialists I need is there anyway to check out my consultant to make sure

[sailor in reply to Lynwoodley]

Hi there.

Glad I have been of help.

Your consultant may well be very knowledgeable on ITP but with so many bleeding disorders they cannot know everything especially a rare condition like ITP. If you look at the web site under UK centres and/or UK ITP Forum, you will find where the centers are.Your consultant may included.

If you would like a private chat, please contact the support association by phone or email and ask them to get the northern 'friend' to contact you.

[scaryteacher]

Hi Lyn,

I've had ITP for 21 years now, and like Sailor, I don't have any meds. My count was between 80-100 when I was first diagnosed when I was pregnant, and now seems to run between 25-45. Tiredness can be an issue, but you learn to use the good days and just curl up if you can on the bad ones.

Hot flushes, yes I get them too, but mine are perimenopausal, as I've only started get them (and night sweats) in the past year or so, plus insomnia. My Mum tells me that I am that age now. I turned 50 in January! I blame the short term memory thing on post natal fuzzy brain, but as the lad is almost 21, I suppose i'd better ditch that excuse. It can also be a symptom of perimenopause.

I avoid contact sports(!) and don't drink much alcohol. I make sure I have a flu jab every year, and my immediate family does as well, to ensure I don't get any nasties (saying that I used to teach full time in a comp, and got exposed to all the bugs the kids had). A pneumonia jab can be a good idea as well.

I have six monthly blood tests just to keep an eye on things, and want to stave off medication for this as long as I possibly can.

At the moment there is no cure for this. I take the view that I could have something a lot worse; and that I'm better off without meds due to the side effects of some of them, as Sailor has also detailed below.

[technogeek]

33 and 44 is still safe but the norm is 150 to 450. When my count was down to 2 (i.e. 2000) I began to bleed through my skin noticeable lower legs. The fear is brain bleed at that level. Tiredness may possibly related but it could be caused by a number of other things as well. The hot flashes can also be something like low blood sugar as in diabetics or many other things too. There are natural ways to increase your platelets such as papaya leaves in a tea or smoothie. Best of luck to you.

[lynne36]

Hi there Lynwoodley

I too have recently been diagnosed. How scary is it eh when you are first told.

Ive had a few weeks to learn about it now and to come to terms with it all, and I feel so much better.

I found the above mentioned site ITP a massive help and I joined the Association the same evening.

My count is 20 at the moment. But I learnt early on, you go by symptoms not count. I too suffer with fatigue, some days are a lot worse than others, I tend to alternate, 1 good day followed by one bad day.

Other than random slight bruising I have no other symptoms, so I class myself as lucky. I have a lovely consultant, between us we have decided as my symptoms are mild I do not need any medication, this is my goal, to stay off it.

I have chatted to many people on here who have all more or less said the same thing. Don't worry, lead your life as you normally would, just be aware.

Please keep in touch.

Good luck and best wishes

[Lynwoodley]

Thanks for all the replies, I have another appointment and more blood tests Friday so am hoping they will be up a bit I'm taking some vitamins as well but I will get papaya and some other recommended suggested things, as many people are living with it with much lower platelets than mine it has given me a lot of peace of mind

[LifeafterITP]

Hi, I was hospitalised with a platelet count of 2, I was put on steroids which initially raised my count to 20 but after 3 months of steroids it was down to 7. My doctor advised that there was no evidence that diet, food supliments etc had any effect, however I tried removing and adding lots of things to my diet and I tried papaya. My doctor was correct as none of it made any difference.

Eventually I was offered Eltrombopag and my count went to 75. I've been on Eltrombopag for about about 20 months now and my count Is now in the 75 to 125 range. I'm a 62 year old male and very active, having ITP is not restricting my life in any way. There is nothing like having a health condition to focus the mind and make sure I keep healthy and live life to the full.

Long may the Eltrombopag keep working.

[arjunmech]

My prayers are with you and don't panic the advices given here will help you for sure

[tip-3]

I was and am in the same boat as you. I understand now that a platelet count below 30 is of concern as I was told by my hematologist. It all depends on the underlying cause of low platelets as everyone is different and there is different illness(es) associated with it; but a CBC can rule out most serious health conditions. I was told i had idiopathic thrombocytopenia which means unknown origin and cause. However, I was told by hematologist it was from a virus. They have to do a blood smear as well to determine and get to the root and cause of it. I also had periods of feeling flush all the time and the sun and heat was overwhelming a few years ago and I was post-menopause; I do experience fatigue and my memory became fogged as well. It is my understanding now that most people do not have internal bleeding as it is very rare and a brain hemorrhage I was told was seen twice in doctor's lifelong practice. Some people experience purpura; petechia and bleeding of the gums and nose; bruises mostly on the arms and legs ... I read somewhere a patient had platelets of 10 and did not need treatment. I see lots of people on steroids; IVIG's (blood transfusions); and Nplate (which I was receiving) and now taking one pill so far of Promacta .... but I wonder how these drugs can affect a person in the long haul so I am researching everything. Diet is a key I believe ... plenty of veggies esp. greens such as kale; spinach; broccolli and fruits as well as papaya leaf extract; etc. I hope they can treat your condition without all these medicines; and I do believe people can go into remission. As I look at my CBC reports, my platelets had been fluctuating the last 3 years. Wishing you the best luck and hope you have a good hematologist who explains everything to you in a manner you understand.

[Lynwoodley]

I am just on my way to Thailand from UK we stopped in Dubai and have picked up about 7 bruises on the way so far,but at least I can fly as my count is 47 now,been told not to fly if under 30. I've been given a number for a brilliant nutritionist in the UK that a good friend used when she had early signs of cancer, she set her up with a personal nutritional plan and since doing as the nutritionist told my friend it seems it has completely gone and the doctors are amazed. I will be having a skype consultation call with her shortly and see what she advises I will keep you all up to date once I have had it

[Metalgod]

When I was diagnosed my platelets were 8. I was given iron n hemoglobin transfusion then on steroids which raise my platelets but didn't stabilize them then had a bone marrow biopsy to see if I could have eltrompag

Luckily for me I could my normal count now is between 75 n 90 which according to my specialist anything above 50 is acceptable

[Kerryc]

My platelets are sitting at 34 at the moment, I too ache and I am very tired all the time. I believe the symptoms are due to having an autoimmune disease not necessarily low platelets.