New Here...seeking info

Hi...sorry any of these type of boards are necessary, but thankful they exist because they offer a wealth of information!

DH is 72, suffers from Crohn's Disease, (40+ years), and chronic anemia. He has suffered two pulmonary embolisms and is on Coumadin for life. For Crohn's he takes Humira, Pentsa, Prilosec, Prednisone and for blood pressure he takes Atenolol. He has two abdominal fistulas, a "gift" from his last intestinal resection. He has only about 10" of colon left. He also has Stage 3 Renal Disease and while he takes no meds for Diabetes, and recent testing has been good, he monitors blood sugars 2-3 times a week. A numbr of years ago in trying to determine the reason for low iron, there was a "tentative" diagnosis made of MSD. He received Infed, Venofer infusions and Procrit injections none of which had any affect. In September 2012, and again in 2013, he received Feraheme infusions which helped. He had Feraheme again in April of this year without any improvement.


On Monday of this week, we received a phone call from gastro that his platelets were low, (64) on 4/30, while on a blood draw from 4/2 they had been 150. Gastro said he needed to see his Hemotologist asap. We did so, and the Hemotologist was not overly concerned, as DH's platelets have previously, (2012)jumped all over the place. (64 is the lowest number I saw in his chart, however.) These low platelets were news to us as we had never been told about them before...they always focus on iron and Hemoglobin numbers. During this period in 2012, DH suffered from EXTREME FATIGUE...I mean showering and getting dressed exhausted him...yet no one mentioned these platelet numbers to us! DH routinely sees a Hemotologist, Gastroenterologist, Urologist, Nephrologist and a Cardiologist...during the period of extreme fatigue, he visited ALL of them specifically trying to find an answer to the fatigue! Not one mentioned low platelets!

Hemotologist yesterday said "watch and wait", repeat blood work in two weeks. That platelets had jumped all over before and righted themselves and he anticipated they would again. Then yesterday we saw Gastro, he didn't seem to be too happy with response from Hemotologist. He ordered liver function testing.

DH has so many things going on healthwise and I am reading here that should he have ITP, many of the drugs used to treat it would not be advisable for him due to other conditions. I know there is the possibility of MSD becoming Leukemia, but with the numbers being what they were in 2012 and having recovered, I can't see that as the problem. (I know this is almost 2 years later and anything can change as well.) I am just so frustrated with the medical community as a whole that I don't know what to do. The doctors he sees are well respected in their fields and his primary care physician is wonderful. However, I feel as if we are just a source of regular income for all of them and they don't really give two hoots! Thanks for reading my rant and any input would be welcome.

Dflora:

Hello. Sorry to hear that your husband has so many health issues. That sure can be difficult to juggle.

Your husband's platelet counts are not alarmingly low. Under normal circumstances, most doctors would just monitor the patient until the counts fell low enough to treat. Since your husband is on Coumadin, that particular number might be higher for him than most, but that is up to the Hematologist to decide. I wouldn't let the panic of other doctors scare you; if a doctor is not familiar with ITP, they tend to become more upset at numbers below normal than they probably should. Liver issues can cause low platelets, so ordering some tests on the liver could be helpful as it may not be ITP at all.

Because of his other health issues, it could be thrombocytopenia due to a problem with the liver, he may have acquired MDS, or he could even have Evans Syndrome which is a combination of anemia and low platelets. It could be any number of things and hopefully, his doctors will look at the big picture and try to figure out what is going on.

There are so many issues with him, the low platelets may not have been the source of the fatigue. Many people do not have fatigue at all, even with low numbers and those who do have fatigue usually feel it most when counts are under 20k. There is no sure rule about that though.

There are quite a few treatment options, and they should try to see if there is an actual cause other than ITP before treating if it should come to that. Some people with ITP actually have another disorder that can cause blood clots even while counts are low. It's called Antiphospholipid Syndrome. That is another possibility that you could look into. If he does have APS antibodies, that could also come into play while deciding how to treat the counts if he had to. APS can cause PE. Just a thought.

In the meantime, it might be helpful to start getting copies of labs. I always do as I also have multiple health issues. It's good to have something to refer to.