New here - Not even sure what I have!

I'm looking for a little advice, reassurance, something! I found out about 6 weeks ago I have had low blood platelets for 4+ years. No one bothered to mention it to me. I went to a GI doctor and he asked me what I was doing about my low platelets. I said: "my what?" I was diagnosed with Celiac disease 12 years ago and now in the past 6 weeks: low thyroid, Eosinophilic Esophagitis and gastritis (after GI did colonoscopy and endoscopy), and the low platelets, which are at 40 and apparently have been (along with low white blood cells too).

So today I had my first appointment with a hematologist. He wanted to do a bone marrow biopsy right then and there. I was too freaked out to say yes and said I'd like to think about it. I was sent home with info about ITP, MDS, and HES. None of these sound good especially the last two.

So I guess my first question is about the bone marrow biopsy, how much does that hurt? They don't knock you out or anything! He said a little lidocaine and it will hurt and sting. In my experience when a doctor tells you it's going to hurt, you're in trouble.

I'm all alone in this and just changed primary care doctor (my first appointment with new primary is in a week) so I don't really have anyone at all to talk to or get info from. I'm in shock.

Lastly, if I'm in the wrong place or something just delete this! I mean I don't even know what I have or what's going on with me.

Thanks,

Susan

PS when I go into my account to add my picture (click the person icon on upper right corner) and click preferences it takes me to a page that says I must be logged in. I am logged in and there is no place to log in on that "you must be logged in page" am I missing something?

Hi Susan. No freaking out! My first question would be to ask your age. The reason is because MDS is more common in those over 60. I wouldn't worry about that so much - it's rare. 40 is not a bad count, it's considered to be safe, and very few doctors would treat it unless it drops.

I had a BMB and it's not as bad as it sounds. It was done in the doctor's office in about 20 minutes. First they numb the skin (just feels like a shot), then they numb the muscle (feels like another shot), then they do the actual extraction. That part really hurt, felt like I got zapped with electricity, but it was over in a second. By the time I said, "Ouch", it was over. I left with a band-aid on my butt and my hip was sore for a few days.

A bone marrow biopsy is not necessary to diagnose ITP and in fact, does NOT diagnose ITP, but it can rule out other things. The only reason it might be good for you to have it done is because of the low white cells. Having two low cell counts could be more than ITP, but still could be nothing to really worry about. I'm confused about the HES though.....are your eosinophils elevated?

Ok, well that has settled me a bit, to say I'm freaked out is an understatement. I just turned 63.

Yes, the biopsies of my stomach, colon, and esophagus showed a high eosinophils count. My white count has been low since 2014 (that's when my platelets went low too), it was 3.5, then 4 and now 3.9.
The doctor said he was doing the biopsy to rule out the MDS and HES. He said he's leaning toward the ITP with all the other autoimmune stuff I have going on but I guess he's playing it safe. I heard that when the needle extracts the stuff it creates negative pressure and that is painful. UGH, not really great with pain!

I guess I'll schedule the biopsy. I've had a migraine for 2 hours I'm so upset. Many thanks Sandi for getting back to me.

Susan

Susan, I guess I was lucky. My biopsy was completely pain free except for the numbing procedure. When the 'aspiration' was done, it was just an odd feeling. Good luck with it.

About Celiac diagnosis. How did that go? In my case I figured out that the odd looking skin condition on my forehead (dermatitis herpetiformis) was caused by eating gluten. Don't seem to have any other issue besides my forehead. I had a negative blood test to check for it but not until after I had stopped gluten for several weeks. Don't find the need to eat gluten for a month to verify it is the culprit.

It took me 11 years to get a diagnosis. IBS, in my head, take some tums, in my head, IBS. I finally got a biopsy, stopped eating gluten the day I got the results and in 3 days felt 98% better. That was 12 years ago. I get really physically ill when I accidentally get some gluten (never at home) once in a blue moon at the restaurants I frequent and now and then when I eat at people's homes (I've all but stopped that not worth a week of illness). They say that even if you don't get ill it's doing a number on your GI tract.

Susan, the fear of the BMB for me was worse than the procedure. Waiting for the results was hard too, but it turned out fine. I've been here since 1998 and have only seen two or three people get an MDS diagnosis. It's usually just ITP. Try not to worry about it, it's not that bad. I think going to the dentist is worse.

Susan a Bone Marrow biopsy is a breeze compared to having a filling

Ok I'm going to call and schedule it today. Thanks very much for all your help and support.

Susan

I'm now scheduled for the biopsy this Friday at 11:30. Fingers crossed.

Susan

Susan ask for sedation with midazolam for the biopsy. It is very light but removes all pain. One biopsy with no sedation was one too many for me. Secondly, I had pancytopenia for a few months but 75 mg daily eltrombopag normalised the red and white count and has greatly improved my platelet count.

The bmb is not as bad as it sounds. I have had 2. The first one they numbed the area (which hurt a bit). There was some discomfort during the actual extraction. The second one I was sedated and do not remember any part of it. The area of the proceedure will be sore for a few days regardless if awake or sedated. Good Luck!
I agree the dentist is worse than a bmb!!

Thanks, everyone! I had the procedure yesterday. It was a bit uncomfortable but not painful. Now I have a 7 - 10 day wait for results. Your replies were all really reassuring for me and helped me get thru it.

Stay warm!

I'm glad it went well! Please keep us updated.

Thought I'd follow up Sandi since you were so helpful. I have been diagnosed with HES. I do have low platelets the info (pages and pages) I got from the lab that did my bone marrow is ITP, HES.

So that's where I am now, not a great place to be.

Susan

It's a good thing you got the BMB. I hope you can be treated and keep them both under control.