Low platelet

[Esther66]

How long have you had low platelets, what did it drop to for them to decide to remove your spleen? Did they give you s bone marrow biopsy?

[Nicebaps1]

I've had problems (on & off) with my platelets for the past 5-6 years or so. The lowest I've been was 0 (zero) on 3 July and since then the highest has been 19.

[Billmox]

Hello,

I was diagnosed with ITP, 35 years ago, how long I had it before then I do know, a bone marrow biopsy was done, and my count was below 10 when it was decided that my spleen be removed.

Regards

Bill

[Morgan]

Hi, was diagnosed 15 years ago but still have my spleen though once or twice I was near having it removed but my platelets recovered (now round 30 plus, but have been between 0 and 80)

[tartan_paint]

My specialist gave me the option of going on Revolade (Eltrombopag) or having my spleen removed. At late 30's I thought removing spleen was a bit drastic. The Revolade are working great, I take a 50mg pill each morning and my platelets are anywhere between 60-120, usually nearer the 100 range. The only drawback for some patients will be if they get them as very expensive, I think a few thousand per month. I need to now get checked every 6 weeks where I get a new prescription. He is happy to keep me on them for as long as they are working. Worth asking about before having surgery done which is always a risk, and will leave you prone to illness as your immune system will be seriously weakened without a spleen.

[Esther66 in reply to tartan_paint]

Thanks for your reply and I will ask about taking them, being I've got lymphoma as well not sure if I can or not, worth asking though thank you

[JasonJ]

I had a count of only 3 without medicine. Revolade was the only thing that helped, but I had to keep taking a higher dose as my immune system counter reacted causing my count to drop.

My hemotologist told me he could start to try other treatments but at my age (mid 40s) it was probably better to consider a splenectomy as taking a lot of medicine long term is probably more of a risk than taking out the spleen. So I decided to go for it. Now I take no meds for ITP and after a year my count is 120.

Removing the spleen does not mean you will be sick at the drop of a hat. It protects you against several types of serious bacterial infections. Most of these you can have a shot against every 5-10 years. If I get some other serious infection I would have to maybe take antibiotics. I also have a flu jab once a year. I haven't been sick more than a snotty nose for a few days since having my splenectomy, year and a half ago, I have 4 kids so I am at risk of catching all sorts. I even have a teen who has had strep throat several times since my operation. 😷

[Sarah-Ambam]

Platelets went to 7, had steroids but platelets dropped as I weaned off them so spleen out and few problems over the years and that was 25 years ago. You can have a test now though to see if splenectomy will work. Yes I had lumbar punch to rule out other illnesss associated with low platelets. Do not worry , so many treatments available now. Wasn't as many 25 years ago. Good luck xxx

[Esther66 in reply to Sarah-Ambam]

Thank you for the reply I don't seem to be so worried now I've had so many responses, my platelets are high compared to most at 74

[janran]

Hi Esther

I've had ITP for 6 years and did not need a bone marrow test to diagnose it. One of the best pieces of advice I received on this forum was, don't get too hung up on the count but just keep an eye out for any signs of bleeding and seek medical advice if you do.

I don't have any signs or treatment until my count drops below 10 and apart from occasional tiredness the symptoms are not that bad. It seems that the cure is often worse than the disease!! I respond really well to steroids but I don't like them. I take as little as possible for as short a time as possible. My haematologist would be very happy with a count over 50 and I have managed without treatment for over a year now.

I still have my spleen as I had an indium scan when I was first diagnosed and as, my liver is the main culprit in destroying my platelets, taking my spleen out would probably not work. I had this in the U.K. so this test may be an option for you if you are in the U.K. too.

I was very anxious at first but after a while you get used to your own symptoms and find a treatment that is right for you. If I am in any doubt I will always go to hospital and get my count checked. Most of the time I forget that I have it and I hope that you will find that this will be your experience too!

Regards Janet

[bipolaroller in reply to janran]

I recently read 70% of splenectomies work and the other 30% is caused by a liver issue. How did you find out the problem ws your liver? I believe this is new discovery in medicine.

[janran in reply to bipolaroller]

Hi

I had my scan in 2011. I am lucky enough to live in a city (Plymouth in the U.K.) where they have the facilities to do the scans. I think that this is fairly common place in Europe where they now tend to steer away from removing the spleen as a matter of course. I believe this is different in the US.

It's quite a long process where they remove some platelets mix them with indium, inject them back into you and then scan you over several days to see where they are being destroyed. Most of mine were in the liver so I was told I was unsuitable for splenectomy.

There are articles on this very subject in the ITP support association's September 2017 edition of the platelet, looking at it from both perspectives. I don't know if you will be able to access that online.

I would recommend the ITP Support Association for loads of helpful and current information

Hope this helps

Regards Janet

[tgk62]

I have to agree with your reply. I was Dx with itp when covered in bruises hematoma And pain in my sides fatigue bleeding gums. My count wa 8. In the hospital was told itp. Two years later I was dx with alpha1 antitrypsin deficiency also. I'm glad I never let them take my spleen. Still have counts from 30-55 now. But I listened to webinars about alpha1 and one alpha1 doctor said many ppl dx with itp actually had alpha1. I'm liver affected alpha1.