Advice needed....

Hi all! I just found this website and I couldn't be happier.

I was diagnosed over 5 years ago when I was pregnant with my son. I had to have 3 IVIG treatments and a pretty long hospital stay. After he was born my counts seem to go up and level out so I stopped going to the Dr. even though I could tell at times that they were low. Then I got pregnant with my daughter and almost immediately started having trouble and they dropped drastically. My lowest number was 6 and I stayed at about 10 to 20, maybe a little higher with the help of IVIG.

So now my daughter is 18 months and my son is 5. I have been feeling terrible especially since starting a new job in a large office building. I went to the hemoc and my counts are at 100; which I know is not a horrible number, but I've never been that low (knowingly) and not pregnant. I am concerned, but my Dr doesn't seem to have an issue. Other than realizing I have a vitamin D deficiency and having me back in a month....not another word. Is this normal??

I have been so incredibly fatigued and believe me it goes beyond just have two kids and a full time job. I have horrible headaches and weird hot flashes (only 30...no menopause), extreme muscle and joint pain, bleeding gums and nose (occasionally), petechia, and ridiculous menstrual cycle for the past 3 months. Plus sometimes have bloodshot and cloudy eyes (maybe from fatigue??).

I am at a loss at this point. I feel like the fact that I am around a bunch of new people and possible illness could be a factor but not sure. My company has work from home positions, anyone think this may help and if so do you think a Dr could provide a letter helping my "case"?

Can anyone relate??

Hi. At 100k, your counts really are pretty good and actually considered 'normal' as far as ITP goes. ITP is defined as counts below 100. I doubt that your counts are the sole cause of your symptoms. Most, if not all Hematologists would not treat at those counts and would only suggest monitoring.

You might want to talk to your GP and see if he will run some standard tests. Many disorders can cause those symptoms such as thyroid disorders, connective tissue disorders and Vitamin deficiencies. Many people with ITP have other autoimmune problems or have problems with Vitamin levels.

Vitamin D deficiency can cause muscle aches, muscle weakness, and bone pain. There seems to be some connection between Vitamin D and platelet count, but I don't think it is well understood, including which leads to the other.

Are you taking a lot of aspirin to combat the aches and pains? Perhaps that would explain bleeding gums, etc.

No I only take Tylenol for pain. I've had a bunch of tests run.

Vitamin D can cause those things, but taking the scripts for low D didn't make any difference for me. I was hoping it would. I was on high dose weekly for 14 months. It could make a difference for you though.

Did you happen to get copies of the labs?

I have my labs from the 13th.. I have had blood work done once since but not a platelet count.

What tests did they run?

Full CBC on the 13th and others since then checking hormone levels and such.

Here's the thing; I know my counts are too low and maybe I "shouldn't" be feeling as bad as I do, but I do feel awful and just want to know I'm not alone. I think I'm going to search for a new hematologist that will make me feel as though I "matter" even though I don't have an extremely low count at the moment. Especially bc as we all know yours counts can change pretty drastically at the drop of a hat.

I'm not saying that you shouldn't feel as bad as you do. I'm saying that there is probably a cause other than ITP. Fatigue can go along with ITP for some, but not the other symptoms. There isn't much more a Hematologist can do other than monitor you right now.

In most situations like this, a GP is a good place to start for running tests for the other symptoms. If something comes back abnormal, he would then refer you to the right specialist. Many people make the mistake of assuming that ITP is the cause for everything and they end up missing something that could be and should be treated. You made it pretty clear that your symptoms go beyond what is 'normal'. It should be checked out.

I can tell you that you are not alone in feeling the way you do, but those of us who do have symptoms like that also have other diagnoses along with ITP.

CMD725 you are coming across the narrow view of specialists. They are only interested in their own bit of the human body. Your GP is the one who will look at everything and possibley bring it together. If not, they will then be able to refer you on to the correct specialist. Your haematologist won't be interested in anything while you have a high platelet count.