Platelets plummeted suddenly!

[Kamal D Shah]

I was diagnosed with aHUS about 16 years back and have been on dialysis ever since with an unsuccessful transplant about 15 years back.

I am currently on daily nocturnal home hemo. I use 10,000 units of heparin. Suddenly my platelets have plummeted to 31,000! There have been no symptoms of a low platelet count. I repeated the test and the value is right. My hemoglobin is 11.8 and WBCs are 2,700 (my WBCs have always been around that). I have been asked to run tonight heparin free which means I would need to flush 100 ml of saline every hour which is a huge pain.

But the larger question is still unanswered - why would my platelets fall so much so suddenly? Could this be related to the aHUS in any way? My neph has asked me to test my LDH, Reticulocyte count, Blood film and then if necessary check for Heparin Induced Thrombocytopenia Antibodies.

Any thoughts?

[Kamal D Shah]

I have been asked to check after about a week. I plan to check it on Thursday. I will keep you posted! Thanks for checking!

[Grace]

How's it going Kamal? I hope reducing the heparin fixed the problem without creating another!

[Cheryl Biermann]

Good, so good. Praying that the next set of labs look good too.

[Donna Kolp]

Yay Kamal!!! So glad they figured it out!! :)

[Kamal D Shah]

An update: I had drawn the blood which showed low platelets just after dialysis. My neph suggested I draw a sample before dialysis. I skipped dialysis on Monday and then Tuesday morning sent another blood sample for testing. Guess what? The platelets were 134,000 which is my normal level. So, now they say I can continue my regular dialysis regimen with a little lower dose of heparin and repeat the test after a week!

[Kamal D Shah]

Thanks all for the responses! 

Cheryl, I have sent my blood for a repeat of the hemogram - I did not dialyze last night - so they wanted to check if the platelets improved by not dialyzing. Also sent off blood for C3, LDH and reticulocyte count. The results should be back in a few hours. I will post once I get them. So far the platelets are the only thing that's wrong. I have no physical symptoms.

My sites stop bleeding in minutes, which they feel is strange with such low platelets. I have also not changed any suppliers recently.

I however did start a phosphate supplement (instead of PhosNaK) and my neph has asked me to stop that immediately.

I will keep you all updated.

Thanks again for the responses.

[Donna Kolp]

Hi Kamal,

Ok, so how long have you been using the 10,000 units of heparin? Do you use a heparin pump or give your self a bolus dose? Is there any way that more was administered? Sorry for the questions. Obviously, symptoms of low platelet count is bleeding, so how long did it take to stop bleeding after dialysis? Do you have any Petechiae, or bleeding from the nose or gums? With Jonathan, an episode of aHUS always started with Petechiae on his ears.

Will continue to look for information for you, and keep you in my thoughts and prayers.

Donna

[Grace]

Hi Kamal, Sorry you're experiencing this -- I hope it resolves soon! I had a transient drop in platelets when I was on HD for a month, but as it wasn't long term I don't know whether it's relevant to you. I'm not sure but I think sometimes platelets can react with the dialyzer/tubing--have you changed suppliers recently? But if that were the case, perhaps you would have noticed a change in flow rate ... Let us know how it goes.

[Cheryl Biermann]

This is a puzzle, I'll search research papers to see what I find, in the meanwhile, the most likely help would be from long term dialysis patients, try private messaging Joy Lewis, or Jessica oh, shoot gotta look up her name for sure, but I think Fritz?  Then try the doctor registry.  You have had some success touching base with Dr. Ramuzzi or Dr. Goodship I think?  Try them as a resource too, and possibly the University of Iowa.  If I find anything I'll get back to you.