Not Quite ITP (Yet?)

Newbie here, but I've been lurking since my low platelet count started last year when my count was in the 130s. My latest count was 94, which I realize is still a great number. In the interest of completeness, I do have occasional bruising/petechiae and such, and have Hashimoto's thyroiditis plus suspected celiac, which can't be confirmed because I can't eat enough gluten to go through a proper gluten challenge. Other blood work, including ANA, prothrombin time, CBC, liver, and kidney function, is all normal. As is my spleen, which has been palpated several times recently.

My question is what to do next. I ask because my primary care doc at my HMO does very little, and I have to suggest things to do. I've considered switching to another primary care doc within my HMO, but they all seem to have the same limitations (and I'm stuck with my HMO because my pre-existing conditions preclude changing carriers). My doc will do what I ask for, but often ignore or downplay the results. For instance, my Hashimoto's was found by me, and when the results were positive, all I got was a brief email that told me to pick up a prescription for Levathroid.

So with a platelet count of 94 and some occasional symptoms, what is the recommended next step? Other causes of low platelets have been eliminated (i.e.: no infection, cancer, medication), and my platelet count is low whether tested with EDTA or sodium citrate as the anticoagulant. Any suggestions would be appreciated.

All any doctor would do is monitor the situation by blood tests once a year or so, if that. Many would say forget about it and come back if you show more symptoms. You'll know if your count falls very low and then that would be time to see a haematologist for closer monitoring.

I have to agree with Ann. Remember that people with normal platelet counts get bruised occasionally and can get petechiae too. Have your platelet count checked occasionally, and don't dwell on it for now.

As far as ITP, I third that. Monitoring is the best course of action right now. I don't know of any doctor that would recommend treatment at this point; protocol states treatment level is about 30k...some go lower than that. The treatments can be expensive or have nasty side effects, so you don't want to go there unless you have to. Your count is very safe.

My counts are in the 200's and I bruise and get petechiae too sometimes. It happens.

Thanks for all the information. I appreciate the observations about bruising, petechiae, and platelet counts, since they come from people experienced with ITP. I feel much better about my situation now. I'll just have my platelet count checked whenever my doc suggests, and if I have extreme situations, go in for further evaluation.

Yeah, we tend to forget that we bruised before ITP, so a bruise after knowing about the lower counts sends us over the edge. When my counts were below 5, I had a huge (about 5 inches round) black bruise that looked like a rotten banana peel. It was on my thigh and the blood actually ran down inside my skin - it looked like black fingers. THAT was a nasty bruise and I hadn't bumped myself at all. Having small purple ones or yellow ones are not a big deal, or if you can explain how it happened.... usually not cause for alarm. As for petechiae, having a few is normally not a big deal. If you have a large area that is covered, then you worry.

Anyway, it's possible that your counts could go down in the future, but it is certainly not something that you have to stress over or do something about. They could just as easily go up too.

Good point. Since I have pale skin I easily see any bruising. But about nine days ago I developed a large cluster of petechiae and an ugly bruise covering part of my thigh, and no memory of having bumped that area at all. That prompted the latest platelet count. But like everyone said, and Sandi described vividly, bruises are just a part of life.

I hope my count goes up, but I've had mildly low counts (under 140) going back to 2005. I'm hoping it doesn't go down any more.

This might interest you:

"Primary immune thrombocytopenia (ITP) is an acquired immune-mediated disorder characterized by isolated thrombocytopenia, defined as a peripheral blood platelet count less than 100 × 109/L, and the absence of any obvious initiating and/or underlying cause of the thrombocytopenia.

Eight percent to 14% of ITP patients followed longitudinally developed clinical hyperthyroidism. Others developed antibodies to thyroglobulin and may eventually develop hyper- or hypothyroidism. Mild thrombocytopenia has been reported in patients with hyperthyroidism (reduced platelet survival) and hypothyroidism (possible decreased platelet production), which often resolve with restoration of the euthyroid state. It may also be useful to measure antibodies to thyroglobulin and thyroid-stimulating hormone (TSH) to identify patients at risk for clinical thyroid disease."

bloodjournal.hematologylibrary.org/content/115/2/168.full

That's a fascinating article, which I happen to have read several months back. I seem to be going in the opposite sequence described in that article. My Hashimoto's, confirmed with TPO antibody testing, is well-controlled and my latest thyroid tests (T3, T4, TSH), which were performed in early April, resulted as euthyroid. I was hoping that being euthyroid would raise my platelet count, but my T3 and T4 never got out of the normal range. My TSH rose, which suggested the TPO testing, which resulted in the diagnosis and start of thyroid replacement therapy. I even hoped that vitamin D repletion due to low vitamin D would help (though couldn't think of a reason it would). But so far the trend is in the opposite direction. It's wait and see.

My thyroid issues started way before my ITP. I haven't had my thyroid tested in a while but aim to before I need a new prescription.

I had what is called "subclinical hypothyroidism," in which TSH is elevated but T3 and T4 remain normal. I never had any of the symptoms of hypothyroidism, or for that matter hyperthyroidism, which can occur transiently as Hashimoto's progresses. The decision to treat was based on a positive TPO result. Now I'm monitored to make sure my lexvothyroxine dose is keeping me euthyroid, and so far it is. Too bad there's no simple, reliable antibody test for ITP, or a handy way to convince the immune system to stop tagging platelets for destruction.

Aoi you really don't want an ITP diagnosis if it can be avoided.

Agreed. I hope not to be. But if I am, at least PDSA is here. I really appreciate all the information I've found here, especially since my doc/HMO are so unhelpful about my low platelet count.

Well, there isn't much they can or should do right now.

It's good that you got the thyroid levels under control. My daughter has Graves and has a difficult time with it, even with a normal TSH.

Aoi wrote:
My question is what to do next.

Celebrate, and forget about ITP.

Yep, relax and celebrate.
Personally, I wouldn't even consider treatment with a count of 94k.


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Thanks again for the advice. I definitely do not want treatment for a count of 94k. I just wanted to learn more about what to be aware of, since my doctor (primary care) has said nothing about it, but was very vocal last year when my count dropped into the 120s from the 130s. And my chart reads "thrombocytopenia," so I'm just trying to find out what I need to know. I've had too many experiences of doctors not telling me things that had I known, I'd have avoided problems. So again, thanks for all the info (both in this thread, and on the site in general).

Aoi - I'm the same way. I've had quite a few undiagnosed medical problems that could have been avoided. I have little trust and usually do my own research.

With the platelets though, just watch for any increased bleeding or really nasty bruises. Other than that, you're good!

That's my plan. Watch and wait and see.

Aoi what I meant was you do not want an ITP diagnosis because of insurance - it's kind of like having a scarlet S on your forehead, with an ITP diagnosis you are a marked person.

Melinda wrote: Aoi what I meant was you do not want an ITP diagnosis because of insurance - it's kind of like having a scarlet S on your forehead, with an ITP diagnosis you are a marked person.

Excellent point, but I'm well past that. Between Hashimoto's, two spinal cysts that may be causing my "pain and parasthesia of extremities" and put me at risk for cauda equina syndrome (although I may also have neuromyotonia), vitamin deficiencies (likely due to celiac disease), and thrombocytopenia (which is already on my insurance rating), I'm well above the state health questionnaire score limit. I can't change plans because no other plan will accept me, and if current healthcare law changes, I'd likely be forced to join my state's high-risk insurance pool.

So no worries about insurance. Just a need to know what if anything to tell my docs to do, since they aren't a particularly competent bunch. I'd get new ones, but as described above, I can't. So I count my purpura and platelets, and will see what happens.