TOPIC:

Good day folks. Thank you for the great forum and a place to come and be with like folks. It's comforting reading through the many great topics here and very informative.
I had a run of low platelets in 2016, when I checked into my family physician I was at 15, he referred me to an oncologist and under his supervision my platelets rose to 150 on their own. CBC was normal but for the platelets and he after 4 weeks of observation he released me and told me to keep an eye out for the common symptoms.
Fast forward to now, about three weeks ago I started seeing bruising and tried to wait for my family doc to get back from vacation, but I was feeling so tired I went in to see another doctor at the same office, and he sent me in for blood work immediately. That evening, last Wed on 6-12, the office called and told me to check myself into ER. I had a count of zero.
So after platelet and IG transfusions and put on Prednisone to taper off hopefully in two weeks, I came home with a number of 201, they let me go natural the last 24 hrs I was in the hospital to make sure my numbers could raise on my own power. The morning after my last transfusion, platelets rose to 161, then over the next 24 hours they rose to 201, supposedly I did that. I just got home last night from the hospital. So I was in for 5 days, man I had no idea I could fill all those vials for their blood tests. They did every test known to man, from Iron, copper, cbc, hiv, hep, fatigue syndromes, a cat scan looking for tumors, I am clean as a whistle, blood is fine, body is fine, just the platelets are having issues.
Before I was released the doc at the hospital said I had ITP, and the discharge papers say Immune Thrombocytopenia (HCC), without the P at the end. Does that matter? So I have IT, not ITP? They did not perform a bone biopsy so I am not sure how they can diagnose me with ITP without doing away with all the possibilities first. I also have Hypothyroidism.
Since a few days before I checked into ER, I was feeling tired, and dizzy. Now that I am home, I not feeling tired, but I am still feeling dizzy, not the tipsy dizzy I see reported by other folks here, but just an overall dizzy detachment, like having a cold medicine hangover type of dizzy, and I can't seem to get rid of it. The doc I saw today told me to drink more fluids, it could be dehydration, I drank Gatorade and water all day and it seemed to help briefly, but not really.
Thank you all again for being here and making this a great place to share and relate.
The title of this topic "Nervous" is because of that constant dizzy feeling I have. Can anyone relate to that feeling?

Cheers folks
John

John, don't know what to tell you about 'IT'. I do know that my paper work initially listed both 'Thrombocytopenia - unspecified' and 'Idiopathic Thrombocytopenia Purpura'. At some point the first one went away and the second one remained. Could have happened after bone marrow biopsy, don't know.

On the dizzy feeling. A bit crazy of an idea, but I wonder if someone that donated platelets to you had taken some sort of medication and somehow the medication got attached to the platelets. For something less crazy, did you pick up some bug while at the hospital? Or, dizzy is a rare side effect from Pred?

Was there an 'ANA Titer' test in there? I think that one will be at least slightly elevated with ITP. 'MPV' (mean platelet volume) should be high too, but that one isn't always tested.

Hal:-My ANA titre was completely normal.
John:- A Bone Marrow Biopsy is not required to diagnose ITP. It it more to rule out possible causes of it. I trust they tested your thyroid function too. Tiredness is common with ITP but also hypothyroidism which also can include dizziness amongst its symptoms.

Hal - My ANA titre has been completely normal too. Also I would think before donating blood a person would be asked if they are on any medication and if so what!

John - I'm with mrsb, have you had thyroid blood work done recently? You say you are hypothyroid - are you being treated for that, taking med? I have had ITP since 1989 and have never been dizzy because of it - I've also never heard of that as a symptom of ITP.

Thanks Mrsb and Mela for the volunteered ANA titre info. It just seems like it is often reported slightly elevated or high by others here. I need to do some investigation on this subject - never know what can turn up. When it is elevated/high and when it is not, in regards to ITP.

Glad that you found the forum John Morris. What I've noticed is that doctors are dropping the word "Purpura" on ITP and just calling it Immune Thrombocytopenia- but abbreviation is still ITP. I can see where calling it IT (information technology) would be confusing. ha

I often have low thyroid and am taking thyroid replacement. Do you know what your TSH is? Normal is around 1-3. My symptoms when thyroid is low is fatigue, sleep but don't feel refreshed- morning tiredness, inner trembling- feeling trembly but hands are not shaking, weak, hair loss, weight gain. depression, slow thinking and craving stimulants- coffee, sugar are also symptoms. Thyroid affects everything so its important to have it in the normal range.

If all you had were bruises when your counts were zero, I consider that a good thing. People can live with low platelets- of course its best to have them above 30 or normal if possible. But for some people, having a count below 10 is not a medical emergency. Good luck JM- hope your dizziness resolves and counts stay up there where they should be!

ps. ANA is not usually tested for people with low platelets or ITP. Its a test for Lupus and Sjogrens Syndrome. Some people on the forum- myself included, have several autoimmune disorders going on. A rheumatologist tests for ANA when someone presents with Lupus/Sjogrens symptoms or other systemic autoimmune disorders. labtestsonline.org/tests/antinuclear-antibody-ana

Hi MRSB, sorry off topic.. I have been recently diagnosed with ITP. I have always read your posts and was impressed that you and sandy and other few people have managed jobs even with extremely low counts. I can understand extremely low counts (for which medicines are being given) but how do you deal with gum or nose bleeding or wet purpura for which hospitalization is required...and if it is recurrent occurring then how to manage one's job, which one cant afford to loose..nor there is disability facility available in our country...not government's insurance..please give me some tips...thank you:)

Sorry vruhalin I'm not going to be of much use answering that one.
Apart from being hospitalised for 1 night following my initial diagnosis I have never had severe enough bleeding to stop me going to work.

Thank you MRSB for your prompt response..but I have read in some of your posts stating you had nose bleed...so curious how did you manage without going to hospital? was it steroid outpatient only?

Basic first aid stopped it within 20 minutes

vrushalin, try an OTC anefrin nasal spray for the nose bleed. It works for the non-stop, but milder bleeds I sometimes get. I don't spray it up high in the nose, as one would for cold symptoms. Instead coat the lower part of the nostrils where the tiny capillaries are oozing. Don't remove any dried clots, even if they're big and visibly ugly. They're protective against more bleeding. The spray may not help for heavy bleeding, though.

I too have never been hospitalized in the 10 1/2 years since diagnosis, not even with single digit counts. I'm fortunate that a relatively low dose of steroid works fast for me to get platelets above 30.

Thanks a lot..actually bleeding symptoms (gum or nose) with low counts requires hospitalisation...so if bledding can be stopped and with steroids ur counts comes to safe level relatively quickly then there should not be need for hospitalization..I guess...in my case I had one episode with gum bleeding..blisters in moth..petechie and bruises..with count 5 k..so I was admitted...this episode scared me so much that I took one month leave..and my counts were not helping me initially with solumedrol and prednisolone at 1 mg per kg dose..till end of second week...so I'm trying to figure out how to manage such future episodes...because haematologist told me treat it as chronic..stating it can relapse

I get the blood blisters in the mouth, gum bleeding and nose bleeds but have never been hospitalised. It helps me having a doctor who doesn't panic because it stops me panicking too. I was given tranexamic acid to help with the bleeding and took it at work when necessary. I don't get pouring nosebleeds but rather oozing ones with lots of clots... yuk!

With regard to the dropping of the word 'purpura' to the name, that was done in 2009 and explained here.
www.bloodjournal.org/content/113/11/2386?sso-checked=true
As it says, the ITP is explained as Immune ThrombocytoPenia, so the P is still there.

The dizziness, detached feeling is likely drug related. You are presumably still on the steroids.

Hey thank you for reply..I too was prescribed tranexamic acid for active bleeding
...but this much low count again will scare me most definitely...
as spontaneous bleding with single digit count is dreadly combination..either no spontaneous bleeding with low count which means platlets are working fine..or spontaneous bleeding with safe zone say more than 30/50k which mean no brain bleed risk is acceptable..there are so much combo with this itp

Hal9000 wrote:

Thanks Mrsb and Mela for the volunteered ANA titre info. It just seems like it is often reported slightly elevated or high by others here. I need to do some investigation on this subject - never know what can turn up. When it is elevated/high and when it is not, in regards to ITP.

A follow up on ANA titre and ITP.
From what I gather, elevated ANA titre is a imperfect predictor of auto immune diseases. Of course, ITP is one of many auto immune diseases. Here is a pretty encompassing article. It includes a long list of diseases, that a elevated ANA titre predicts, further down the page. Some are auto immune, others are not.
"What is the interpretation of the ANA screen result?" & "What non-autoimmune conditions produce ANAs?"
www.medicinenet.com/antinuclear_antibody/article.htm

An interesting study that I stumbled on along the way is this one.
"Elevated antinuclear antibodies and altered anti-Epstein-Barr virus immune responses."
www.ncbi.nlm.nih.gov/pubmed/25300805/

It follows that
- an elevated and/or fluctuating ANA titre can serve as an indicator of EBV activity
- the presence of EBV seems to be a common denominator of a variety of auto immune diseases
- the ANA antibody occurs when the immune system is learning how to attack the virus capsid

Hi there and welcome,
Just quick comment on the naming: from what I've read, Idiopathic Thrombocytopenia Purpura is the old name, and Immune Trombocytopenia is the more up-to-date name, but the abbreviation ITP still stands.