Why don't they want to monitor my platelet count?

When I was diagnosed with ITP the hematologist said it was nothing to worry about and that we would just keep an eye on it. Never a word about it since then till I asked if I can take Advil with ITP. He said no.

When I told him how tired I've been he says ITP doesn't cause that. When I told him I had found blood blisters in my mouth he didn't seem concerned. Just said he had no idea why that would be...I'm a bit concerned...he is also my PCP and he's so sweet...

He seems to feel we don't need to monitor my platelets at all...is this normal? Plus, the last lowest count I've had was 117 which isn't really all that low to begin with but he insisted that my bloodwork was consistant with ITP although I don't need to do anything special about it...

He sent me to a rheumatologist who says I must have fibro and gives me celexa on the first day. She felt my hands and throat and knees and said there was no swelling and no need for further testing and that she had no idea why I had ongoing mild fevers or swollen lymph nodes on and off all the time...or why I'm so tired and weak...or why my hands feel stiff and so do my knees and ankles and shoulders...

Not sure where to go from here.

My white count is often a bit higher than normal but nothing huge or over the top, my HS-CRP was very high, my ANA was negative, ESR was 3 which is fine, Anti-DNA negative, Lymes disease negative...Magenesium is low and Vit D is low but they said nothing about those or that my pancreatic enzymes are very low...they said "Everything for the most part looks fine" What the heck does THAT mean?

I wish I could tell you what ANY of it meant! But.....I'm not the one to do that. Your hemo is your PCP too? That sounds odd to me. My first reaction is to find another hemo doc. One that specializes in it. It all sounds crazy to me.

Well, sweet does not = good. Maybe get another opinion? I think that anyone with lower than normal platelets should be monitored at least once or twice a year...I'm not sure how low you have actually been.

I've said this before and I'll say it again, sometimes symptoms of certain disorders come before blood work shows anything. They may not be able to find a "why" for these things now, but you shouldn't give up or feel like you're crazy.

I think I might see one more hematologist so we can get closer to a good idea on what's going on. He seems so baffled...One time I went in and was so tired at the appointment I had to lie down during the appointment and I started to fall asleep and I couldn't control it. The nurse called the doctor in right away and he just started asking questions like crazy and feeling my abdomen because I had had sudden severe chest pain/upper left abdominal pain in April which no one could explain. I tried to explain it but it was hard. I told him that I've had fevers that appear out of the blue. One time it was almost 104 and then went down in an hour...to me that suggests inflammation or at least infection of some sort. He said maybe it was fibromyalgia. I am so tired of this. When I went to the ER in April the nurse practically scowled at me and said not to come to the ER for pain meds. I was so offended that I demanded all of my records from that night. They had drug tested me and I came up positive for amphetamines. Well of course I did! I take Adderal for ADHD! But they didn't bother asking...*sighs*
The thing was I was dxed by doc via his nurse via email. She said there are no symptoms of ITP just low platelets...when I tried to show her info suggesting otherwise she seemed annoyed...

I feel awful because this PCP is such a sweet doctor...but then again so was my gastro who told me I just had IBS for two years when in fact my gallbladder was incredibly diseased and they could never identify what happened. No stones. It just started getting inflammed over and over even though my blood work and CT scans/Ultrasounds were normal. It didn't make much sense.

I hate starting over though you know? Having to explain everything all over again. But then again it might be worth it in the long run...

I can understand your apprehension about going through everything again, but maybe something will come up that you haven't mentioned to the other docs. That recently happened to me. After 4+ months of talking with the nurses and docs I suddenly remembered that I was allergic to formeldahyde (the stuff they inject you with when your dead!) and tolelune (Stuff in nail polish) And maybe something you say will strike an idea in a different doc. Can't wait to hear how it goes!

Dittos to what's been said. Get a second opinion, with a new doc with fresh eyes, who might consider what others have not. On the fatigue, many hemas will say that is not a symptom of ITP, but folks on here will tell you differently. My ITP kid was tired, cranky, and bruised at diagnosis. For a while there, we could tell when she dropped because she became fatigued and cranky, and had what I call the "vampire face" (ghastly white translucent skin with dark circles). Perhaps it's the serotonin/platelet connection. I never really figured it out. But folks with ITP can get pretty tired when it's flaring up.
Norma

The sad thing bout ITP, is that if u put 12 hematologists in a room, 6 would say treat, and the others would say not to treat. Long time readers of the old board know my stance on this confusion in the hematology/oncology world. I know of a family whose son w/counts of 125,000 and NO symptoms was told to have his spleen removed asap.(They did and deeply regret it since). I myself have been told," ITP is nothing to worry bout, teen acne is more serious.". To which I replied," So I don't need to come back for check up?". To which the oncologist said(almost yelled)," You are a @#$% fool if u think u can walk around with ITP untreated. This could kill you.". "But u just said nothing to worry bout," I replied. His reply before I left," Absolutely, nothing to worry bout."
With oncologists like this running around it is now wonder we are scared, and confused over this. I figure if your counts are over 30,000, and NO symptoms then its ok to get a cbc twice a year. More if u are bleeding. Hope that helps you in knowing u r not alone when it comes to how the hematologists are divided on treat/not treat.
Arnold S.

What has been happening to you in the last week.

I know health is different in the US to UK in regarding finding doctors. My personal opinion is that I think you should try hard to find a second opinion from another Haematologist.

Tiredness can be linked to ITP but Fatigued from how you seem to be experiencing sounds like something else more serious happening altogther like M.E. But am not a doctor, just someone who has episodes of ITP from time to time. Sorry but like others have suggested sweet doesn't equal effective treatment.

I really hope you pluck up the courage and find another Haematolgoist. Find a way of getting an ITP medical card so that next time you need to go to ER you can present yourself more fully so that they wont prejudge anything. ER is different in UK and they cannot refuse to treat us if we need treating.

Hi there,

Well on my own I started taking Magnesium supplements..at first it was like a miracle...the pain started to disappear...then I started to feel worse and so I stopped and the pain in my joints is back...I called my PCP and left a message for him. The nurse called me back instead of my PCP/Hematologist and says that the dx from the rheumatologist of fibromyalgia is based off of symptoms so that's why the rheumatologist didn't run any tests. Honestly, I think she just thinks I'm nuts...and I'm just plain tired of feeling like that. I went through 2 years of that before the doctor acted extremely surprised and shocked that my gallbladder was so diseased "all of the sudden"...

I think I'm just going to let it go. I'm so tired of making appoinments and making the time up at work

I'm so shocked by this! Fibro should be a diagnosis of exclusion - you don't just give that diagnosis blindly until you rule out other causes. Do not give up - those doctors are poor examples of their profession. You need another Rheumatologist. Call one for me, please?

I strongly advise to obtain a second opinion. I am not suprised you are very frustrated and tired at taking time of work etc I would be and would feel so worn out by it all. Even with my platelet count they still monitor it.

I have had idiopathic Thrombocytopenia purpula since 1994 and get episodes from time to time. They do an annual blood count to keep my file open so that whenever they do drop I can be referred back to them by a simple phone call and go through. At the very least the haematology department should be doing that for you - though is it different in USA?

Please, try and get a second opinion and find out what they have to say. Hopefully it will help you in some small way of gaining control of your health.

Hey, I have no idea...they made no attempt to make appointments to monitor. They just sent me an email (they stopped doing emails to patients recently but it was through our hospital system) and it just said I have something called ITP and it's nothing to worry about basically. Nothing more than that.

I'm wondering if I don't even have it. I mean the lowest they have seen is 117 but then again its not like they are checking often. The highest I've had in the past year is 160 but that's a normal count and 117 isn't really low enough even though the hematologist thinks my blood tests are consistant with ITP. I've had blood blisters in my mouth and I bleed a little longer than I should but nothing serious that I can connect with ITP. My other symptoms (joint aches, fevers, inflammation) they say are just fibromyalgia.

You could just have mild ITP. In that case, it just needs monitored here and there.

As for fibromyalgia - I wasn't aware that it caused fevers and joint pain. I've heard it described as muscle pain and an all over achy feeling. I'd research that if I were you.