ITP Help

Hi, I really need some advice/help. I had low platelets both times when I was pregnant but then, a few years ago, my platelet count seemed to be lower without being pregnant. I typically fall right around 90,000 so it's not too bad. My pcf sent me to the hematologist who told me I have ITP. No testing, no nothing. He said I'd I had surgery, I would have to be cleared, that's all.

Fast forward 4 years later and I suddenly have easily lost (though I was trying) 20 pound in 3 months. Been eating fine but I have more bruises than ever. But, on 11/27 my platelets were fine, then right after that the bruises started. They are mostly on my thighs. I am itchy too, have had two cortisone injections in the last month because of a calcificic tendonitis and plica getting pinched in my knee. Had an MRI on the shoulder last week but, haven't heard back yet. Now, I think I have a UTI! I don't know what is going on with me but, I see a new hematologist on the 14th. Oh, I also have these strange small lumps behind me knees. Dunno what that is.

I know that this is a lot of info but, has anyone had these symptoms? What should I ask the new hematologist? I am scared that something is really wrong with me. Any help is much appreciated!

Hi, I'm really disappointed that I haven't gotten a response. I thought I could find advice here.

Shelly:

Usually if people don't have an answer, they don't respond. I honestly don't know what to tell you either as those are not ITP symptoms. Have you seen your GP about the lumps?

It's entirely possible that something unrelated to ITP is going on. I've not had the symptoms you mentioned, but for years had a set of symptoms that my doctors couldn't sort out. But they were unrelated to low platelet counts, as it turned out.

I agree with Sandi. A visit to your PCP is a good idea. A loss of 20 lbs. in 3 months without trying along with everything else you mentioned should be investigated. I hope you can be seen quickly and find out what is going on.

Tell your new haematologist everything you wrote on your post and hopefully investigations will commence

I really don't have an answer for you - other than are you telling your doctors all of this?

What is your platelet count now? You said they were fine, what was the count?

If you suspect a UTI get checked out! I know someone who had no symptoms at all but a UTI sent her to the hospital for a long time because it went into sepsis (causing a heart attack and being on death's door and a long recovery).

Shelly,

Would you call your weight loss "unexplained"? That can be an important symptom and should be checked out.

There are many possible causes for unexplained weight loss. For example, having ITP makes you more likely to have other autoimmune conditions, which could affect other organ systems (thyroid, parathyroid, pancreas to name a few), causing other conditions which can result in unexplained weight loss. Or it could be nothing... but my point is that you need a good primary care physician to figure this out.

Shelly,
I agree with what the rest have said. Sometimes it's hard to figure all these things out and you need to really press your doctor to see what is causing all of this.

Another thing I would actively do is a lot of research on my own. For some reason, I no longer completely trust doctors. I always do a lot of research on my own and then try to convey what I have learned to my doctor. Doctors in the U.S. are so busy any more that they have a hard time figuring out what's wrong with their patients--at least that is the case in Southern California. My doctors are swamped with patients! And, you can try to change doctors, but you run into the same problem. People I know in Palm Springs say they have the same problem there.

Thank you for all of your comments. I'm getting really scared as I continue to wait and research my symptoms. I am still bruised up and now they are appearing in more places. I have several lumpy spots in my back according to my husband and I have swollen glands that don't hurt under my armpits. I feel like every time I eat I am stuffed to the brim no matter how much I eat. The itchiness hasn't been as bad the last few days but, I've been having at least one headache a day. I am doubting the UTI now but it feels like something hurts inside the bladder area. Overall, I feel tired all the time but much worse lately. I fell asleep after taking adderall yesterday while sitting up the couch! I have had huge fatigue problems/hypersomnia for the past few years, had an uterus ablation due to excessive bleeding. So much of this was probably all related to my ITP and I had no idea until a month ago.
I made an appointment with for Thursday because I can't wait till the 14th. I'm going nuts with worries of cancer or something else horrible because I just feel like something is very wrong. Oh and about my weight, I was exercising and trying to lose weight for about 2 1/2 months, then hurt my shoulder, then my knee and stopped. Have been eating total crap but limited amounts at a time cuz I get so full, but am still losing weight. About 5 pounds since not exercising. That's weird for me. Any other ideas please let me know. Thanks!

Shelly, you didn't say who you made an appointment with for Thursday, but whoever it is, I hope you get quick answers. Either your fears will be relieved, or you will know what you are dealing with, and knowing is always easier to deal with than the unknown. Please check back and let us know how things progress.

www.nlm.nih.gov/medlineplus/druginfo/meds/a601234.html
Shelly what about side effects from Adderall - itching, weight loss, headache, excessive tiredness ...

Could any of your symptoms be from the med?

Keep us posted - hope you get some answers Thursday!

I agree with Melinda. Just wondering if you are having reactions from the Adderall--you just never know and sometimes the doctor doesn't even realize it. Try to do some research on this medication.

Keep us posted!

I agree and have been wondering about the adderall as well. I see my sleep doctor tomorrow, so I will definitely tell him about my symptoms. I've been on it since September though and my symptoms only started at the beginning of December. Not really sure but I am definitely going to ask him. I hope I don't have to stop taking it though because I can finally function and concentrate at work and not fall asleep all day.

My appointment Thursday is with my original hematology office but I'm seeing the nurse practitioner and not my ITP doc, who I do not trust. I'm also keeping the appointment for next week with the new hematologist. Hopefully someone will know what the heck is going on with me. I just need to know cuz it's driving me batty!

Thanks for all the advice, I'll keep you posted!

Well, went to the sleep doctor and he said my symptoms might be related to the adderall xr so he's switching back to adderall ir because none of this happened while I was on that.
Saw the nurse practitioner at my usual hematologist today and she didn't say much. Just get this blood work done. Another cbc. She said their doctor never did any further testing for my ITP because my platelet count is always over 20,000 when they check it and they only really worry if your count is below 20,000 and your white cell count is up. I guess since neither applies to me, they just say ITP. No cause, no nothing to explain anything. Is that normal?
I had her feel the lumps on the side of my knee and she said she couldn't feel them. I've had 4 people and the sleep doc feel it and they all felt them. She said it's definitely not sarcoma and that I should ask my orthopedic doc. But, the orthopedic told me to ask my hematologist. Showed her my bruises and she said it was a lot of bruises. So I learned nothing but she thinks I'm sweating at night because I'm menopausal but I'm only 43. I feel like she was useless but, she did not seem to act like she thought anything was wrong. I went from 125 to 118 in 2 months while not exercising or eating right and she had nothing to say about that.
So, I'll feel better if the adderall ir makes my symptoms go away and/or if the hematologist next week says anything remotely useful.
Any thoughts on this would be appreciated.

Shelley:

ITP usually doesn't require much testing unless there are other symptoms. I realize that you do have other symptoms, but if those can be explained by a reaction to a medication, that isn't ITP related obviously. Hopefully that's all it is.

I hope you get it sorted out soon. I know how frustrating it is to go from doctor to doctor and not get any real answers, but you might have gotten one of the problems solved. Maybe it will all fall into place now. If not, keep at it.

Shelly most will never know what triggered their ITP - so you can't fault the PA on that score.

Regarding menopausal - there is a test (expensive so insurance may not pay for it) to check hormone level. Also now there is perimenopause, maybe that's what the PA meant.
www.mayoclinic.org/diseases-conditions/perimenopause/basics/definition/con-20029473

Every woman is different when they start the transition.

I literally worried myself into a nice case of shingles over maybe, a "maybe", having to go back on prednisone. Believe me it wasn't worth it!

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Doing an edit to add this from the Mayo Clinic site:

www.mayoclinic.org/diseases-conditions/menopause/basics/tests-diagnosis/con-20019726

Tests typically aren't needed to diagnose menopause. But under certain circumstances, your doctor may recommend blood tests to check your level of:

•Follicle-stimulating hormone (FSH) and estrogen (estradiol), because your FSH levels increase and estradiol levels decrease as menopause occurs

•Thyroid-stimulating hormone (TSH), because an underactive thyroid (hypothyroidism) can cause symptoms similar to those of menopause

When was the last time you had a thyroid work up [blood work]?

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Shelly, the weight loss could be due to your medication. I would just wait and watch on the ITP since
your platelets are not that low--which actually is a good thing! Mine would go all the way to 1000 in
one day.

I will have to say with our new ObamaCare and with a lot of health organizations, we do have to be very pro active in finding out if we think something is wrong. My girlfriend had kidney stones last year. She never passed them, but when they examined her again, they couldn't find them. She was very pro active and had them do a lot of different tests (she still had some pain--though not as bad). Sometimes we have to push for things. But, then you do have to make sure that your insurance will pay for them.

Just make sure you keep an eye on things. Get your hormones checked out, too