Attention Sandi : Husband Recently (semi) Diagnosed...

Hi Sandi,
I'm new to PDSA. I've been looking at different topics on the forum and you seem to be a real expert on ITP. I was hoping you could answer a couple of questions I had. I would really appreciate it!!!

My husband, Matt, is believed to have ITP. He went to the hospital in November 2016 for an unrelated issues (gallbladder was causing chest pain), and his CBC revealed a low platelet count 140k. His gastroenterologist sent him for follow-up blood work. His next CBC showed a count at 132k. Matt was then referred to a hematologist. His counts were taken every 2 months and have be slowly decreasing: 121k, 117k, 110k, 114k, and most recently 83k. From November 2016 to now, Matt has never experienced any symptoms and feels fine. Energetic, happy, etc. [Side note: The 114k and 83k reading were only a week apart. The 83k was taken from a blood sample from his finger (we thought it was weird that they took it from his finger but that's the way the hematologist at the cancer institute took it). Is it normal for it to vary in a short amount of time?]

Sorry for rambling. I guess I'm still kind of reeling from all of this. Matt lost 80 lbs since November (on purpose) and is in the best health of his life, besides the ITP, so we're kind of surprised by all this. From looking at the stories on this site, I know we should be grateful that his levels are at a safe level. I still can't help but feel scared for him. I'm trying to move past that. He was semi-diagnosed two weeks ago. Anyway, I was just wondering:

1) Should I be concerned his level are slowly dropping? His hematologist is not concerned. And just wants Matt to come back in 3 months. Is that normal? Is it okay that they don't check his platelet levels before that?

2) We asked the hematologist straight out if ITP impacts life expectancy. He answered very quickly no. Which of course made us feel better, but when I went online it was a mixed bag. Some people were saying ITP shortens life expectancy 20 years (I wanted to throw up), and others were saying there is no real impact on life expectancy. Which is true? Do you know what impact ITP has on life expectancy? I tried to find peer-reviewed journal articles on prognosis. Most of what I found said ITP has a fatality rate of 1.5% (which is low), and that life expectancy is shortened only when someone is chronically and persistently low (<10k) and does not respond to any treatments.

3) Is there any way his platelet counts are related to his weight loss? I haven't read anything about dramatic weight loss and ITP. It still baffles us that he is in better all-around health now (blood pressure, blood sugar, cholesterol, etc.) and this is when ITP has come out.

Thank you for taking the time to read this and any input you may have. I'm trying to get a grip on all of this. Fortunately, Matt seems to be taking this all in stride. I guess I'm still a little freaked out.

Best,
Melissa

Melissa:
Hello! I'm glad you found us. We are pretty knowledgeable as a group and can help you along the way. I'll try to tackle your questions.

1. At this point, monitoring is all that is needed. It's fine that the hematologist scheduled the next appointment in three months. There is nothing he could or should do right now. Be aware that if your husband should develop symptoms; bleeding gums or nose, petechiae, blood in urine or stool or unexplained bruises, he can easily call his GP and ask for a CBC. If counts are low, he could call the hematologist and schedule an earlier appointment. Help is there if the situation should change. His counts could just as easily start to go back up even though the trend has been downward. There are no rules for ITP. If your husband develops symptoms, it would not be cause for panic, you'd just need to be prepared to discuss treatment options. It wouldn't be a bad idea to start reading here (you already have) to become familiar with them.

2. As far as life expectancy....ITP itself does not impact life expectancy unless the ITP is severe and refractory. That in itself is rare since there are many newer drugs that have good success rates to bring counts up. If a patient does not respond to any treatment, again rare, there is a small risk of a brain bleed. The percentage of people dying from ITP is something like .0067%....very low. If a person has a splenectomy, the risk goes up due to the risks of thrombosis or sepsis directly related to the splenectomy. No one ever has to agree to that. It is not a necessity. Treatments can also impact life expectancy. Immunosuppressants raise cancer risks and other long-term side effects. Many people choose to treat ITP non-aggressively and that greatly lowers the risk of those long-term side effects. That is a whole other long discussion that we can have if the time comes. A person can lower risks by the choices they make. I didn't have that insight when I was diagnosed and I wish I had. After going through it and observing for many, many years, my thoughts have changed.

3. I don't know if the weight loss was a trigger. Did he start any herbal supplements at that time? Did he start eating or eliminating certain foods at that time? There are things that can be a trigger but it can be very hard to pin point them or ever know for sure.

It's not time to freak out. ITP can sometimes be acute and transient. Some people settle into the 60's and 70's and live perfectly normal lives with those counts. If counts drop and treatment is needed, ITP is nearly always manageable. In time, it just becomes a part of life. Many of us have been below 5k and we're fine. I know it's scary and it's normal to feel that way, but ITP is not a death sentence. It's a pain in the butt, yes and treatments are not pleasant, but it's rarely fatal. I hope this helped.

Hi Sandi,
Thank you so much for the response. And getting back so quickly. I'm feeling better already. I will definitely become more familiar with the treatments and see which ones are less risky in terms of long-term side effects.

Because ITP is more rare, it seemed rather isolating. I think this forum will help a lot with that. Thanks again for the guidance and input. Wish you the best.

Melissa

Feel free to ask anything, anytime. Never feel like it's a stupid question or you are being a bother. There is usually always someone around and I log on several times a day when I have time. If I don't have time for a lengthy response, I will tell you that I can answer later, and I will.

ITP doesn't seem rare to me. My sister was diagnosed in 1982 and I was diagnosed in 1998. I've been here nearly every day since then so ITP is as common to me as pajamas and TV. You will not feel isolated here, that's for sure! The PDSA is the most knowledgeable organization there is with the top ITP specialists as members of the board or consultants. They don't post here, but they are involved with the latest treatments and research.

Just my 2 cents, I'm not a doctor, just someone with 9 years ITP experience. I personally would not trust a blood count from a finger stick. I would insist on having a regular draw when Matt gets his CBC again in 3 mos. I've seen so much variation in platelet counts! I had labs done at Lab Corp for my primary care doc in the morning- counts 15K. Afternoon got labs at a cancer clinic for my hematologist- counts 30K. That is the difference between treating with powerful drugs and doing nothing- so a pretty big difference to me! I mentioned it to my hematologist and he said that counts fluctuate, but he really thought it was just the difference in the labs. You'll get a different reading depending on the lab. So my advice as Sandi said- try not to worry. 83 (if it really was 83) is a fine count. People can live with low counts- just watch the symptoms. Its hard to know what causes ITP, I believe drugs, viruses and vaccines seem to have been a cause for some people.

Melissa,
Curious. Has Matt taken a lot of Ibuprofen lately?

Thanks Poseymint! I really appreciate the response. Yes, I'm definitely going to have them do an arm draw next time. Every time he does the finger stick, it's always way lower than when they take it from his arm. And I'll keep the lab differences in mind too. Hopefully, we'll get to the point where he'll go to the same place for blood work.

Hi Hal9000! Um, no he wasn't taken a lot of Ibuprofen. He rarely gets headaches or things like that. The only thing I can think of that was out of the ordinary was that he was consuming more alcohol than normal. Probably too much. He was temporarily relocated for work. Stuck in the middle of nowhere, alone, for an engineering project. Since November he has completely cut out alcohol except for special occasions.

Alcohol can sometimes inhibit platelet production. That is a possibility. Sometimes when the alcohol is stopped, counts can go back up in time. That is not always the case though.

Certainly didn't do anything for my count when I gave up alcohol for 3 months.

As I said, it doesn't help everyone unless it was the actual cause in the first place.

I agree Sandi, I was just stating it to show I was one of the people it had no effect on. It will be interesting to see if anyone can report going teetotal did help them

I haven't seen that happen yet.

Yes, since refraining from alcohol consumption, Matt hasn't seen a difference in his platelet count either. His hematologist said he can have a beer once or twice a week if he wants.