I'm a 44 year old male. About a year and a half ago I went to the doctor. I had developed sleep apnea, terrible muscle cramps and stiffness, swollen legs , face and hands, dizzy spells, hair loss, extreme fatigue, dropping things all the time. My doctor suspected hypothyroid and referred me to an Oncologist. At this time my blood platelet count was 9, which is extremely low, and he immediately admitted me to the hospital. The first doctor put me on Synthroid and the Oncologist gave me Prednisone. I was supposed to go back and see each of them 2 weeks after I got out of the hospital, but between all the doctor bills and hospital bills and no insurance, I didn't go back to the Oncologist and only went to my doctor when I started feeling bad again to get more Synthroid. So, I haven't been taking it regularly.
Recently I had to take off work because I was feeling really bad again. I went to a clinic, explained my hypothyroid history, and she wrote me a prescription for Synthroid and some antibiotics for ear infections. She also took some blood samples. She called me two days later wanting me to come back and go over the lab work. My platelet count was very low again. They drew more blood. Then a few days later I get a call at 11:00 PM. I woke up an answered the phone, it was someone from the clinic telling me that I need to get in the hospital right away so they can find out why my platelet count was so low. Up until now I had always thought that it was due to the hypothyroid, now I'm being told that the platelet count has nothing to do with the thyroid problem. So, I go to the emergency room, per the doctors instructions. They faxed the lab results to the hospital, my platelet count was 20. They seemed puzzled. He couldn't understand what would make an otherwise healthy man have such low platelet count. I left no better off than when I went in. They didn't take any blood, no medicine, nothing.
What do I do now? Apparently there is a major problem somewhere in my system, but no one seems to know what it is. When I was in the hospital the Oncologist told me it was caused by stress. I assumed he was talking about the hypothyroid and the low platelet count. That made sense because I was under a lot of stress at the time. I feel okay as long as I have the Synthroid, but I still get real bad dizzy spells, numbness in my hands, arms and legs, bruise real easily, scaly dry skin, muscle and joint pain.
Anyone have any ideas? What could be causing my platelet count to get so low? Where do I go next?
Last edited by wcb7962; 02-19-2007 at 12:01 AM.
The Following User Says Thank You to wcb7962 For This Useful Post: hb12345 (03-10-2011)
I have Immune Thrombocytopenia Purpura, ITP - which means I have antibodies to my platelets, and every once in a while, my body attacks my platelets, leaving me with a very low platelet count. They treat me with prednisone to get my counts up.
To diagnose ITP, they basically have to rule everything else out - like cancer, infection, etc. You'll need to be under a dr's care to figure it out. A count of 20 is low, but I know people with ITP who don't treat unless they have extreme bleeding, because often the treatments for ITP are much worse than the condition itself.
However, you need to find out why your platelet count is so low, and that will require a drs care. Don't ignore this, you need help.
If it is ITP, you can live a normal life, though. It's more of a nuisance than a debilitating condition, once you find a way to manage it.
The Following User Says Thank You to japlopper For This Useful Post: ljw359 (11-06-2011)
I have lots of experience with ITP (unfortunately). My now 18 year old daughter was diagnosed 6 years ago and is now in remission!
ITP or also known as Immune Thrombocytopenic Purpura or Ideopathic Thrombocytopenic Purpura. Normal platelet counts range from 150-400. Around 90% percent of people who develop ITP, will have "acute", only lasting on average 3 months. It is usually brought on by an infection, certain types of medication but, to be honest they really don't know. Hence the name Ideopathic...
The other 10 % will have chronic "Immune" TP. It's an auto immune disease in which the spleen attacks the platelets.
There are several different treatments for ITP. You mentioned Prednisone already. My daughter took 150mg daily for almost a year. There is WinRho, which is only for patients who are RH+ and for those who haven't had Splenectomy, it's a Immune Globulin Intravenous. It is given in the Hematologists office or Chemo treatment center. My daughter also was on this treatment for a number of years but, eventually developed an immunity to it. There are side effects to this medication that closely resemble that of the Flu. As far as I am concerned, this is a wonderful treatment! There is also IGIV, another Immune Globulin Intravenous. I don't know alot about this treatment to be honest. It is expensive I know that and there is a waiting list to get it. Both WinRho and IGIV are derived from Human Blood so their availability depends on people donating blood. There is also Splenectomy, which was my daughter's last and hopefully final treatment! Splenectomy does not work for everyone!! Chances are very good that'll you'll stay in remission if your platelet count stays up for the first 6 months after surgery.
Just so you know, there are several things that can cause your platelets to decrease. You should avoid any aspirin products, Advil/Motrin, Pepto Bismol..
I could go on and on with more info. but don't want to write a book. If you want more, I'll be glad to give it! Good luck!
The Following User Says Thank You to fordmann67 For This Useful Post: ljw359 (11-06-2011)
I appreciate your information. Here's an update...The doctor referred me to a blood disorder center. First visit, naturally they took a bunch of blood for lab testing (Platelet Antibody, Antinuclear Antibodies Direct, and TSH). After all this time I still don't know what these mean. Anyway, he puts me on two 20mg prednisone twice a day (80mg a day total). Second visit, two weeks later, platelet count is up to 150. The doctor (a different one, the senior doctor at this facility), tells me that my spleen will have to come out. He even asked me where I'll be having this surgery performed. I'm from out of town, so I gave him the name of the hospital where I live and he said they'd send all the paperwork there. He also reduced my prednisone to three 20mg a day. I went back the following week, this time I saw the original doctor that I saw the first time, my platelet count had dropped slightly to 115. He reduced the prednisone to two 20mg a day and said the splenectomy wasn't necessary as long as I responded to the prednisone. Every time they drew blood, I would have a huge bruise for a week or so. My next visit two weeks later, platelet count was 90. He reduced the prednisone to one 20mg per day. Last week I went back and my platelet count was 80. He told me to stay on one 20mg per day. It seems to me that without the prednisone, my platelet count will steadily drop like it has before. It has been as low as 9. They keep telling me that they don't like to keep people on prednisone for long periods. I'm wondering if the splenectomy is inevitable or is it going to be a cycle of treatment, on and off prednisone for the rest of my life.
Last edited by wcb7962; 05-07-2007 at 02:12 PM.
Reason: updated information
Thanks for sharing your information with me, I welcome any input you can offer. I'm on the Prednisone, but I really don't like it. It just makes me feel strange and I constantly have a taste of blood in my mouth. The doctor recommended removal of the spleen, but I just don't like the sound of it!
I had my spleen removed in 1995. It kept my platelet count up for a number of years, but eventually the count crashed and I found myself back on Pred.
If I had it to do over again, I wouldn't rush to remove my spleen. It is only 50% successful, and once you have no spleen, the drugs to keep up platelets are immunosuppressants, so you're already immunocompromised because of having no spleen.
My advice is to get a second opinion. Drs often rush to take out the spleen, but it is not something to be done lightly. If you're responding to the Pred, I'd wait and see what the counts do after you taper off the drug. I know it's no fun to be on, but there are plenty of other treatments besides surgery.
Research it on the internet. There's plenty of information out there about ITP and splenectomy. At least be completely informed and not railroaded into a surgery.
The Following User Says Thank You to japlopper For This Useful Post: ljw359 (11-06-2011)
My husband has been sick now for about a year. When we went to the doctor last september he was admitted immediately because his platelet count was only at 10,000. He has gone up and down as high as 120,000 and today back down to 20,000. He has been through IVIG 3 times, Ritoximab ( a kemo therapy) 10 times, 2 blood platelet tranfusions (one in which his throat started to close), 4 winrow treatments,3 bone marrow biopsys, probally over 60 blood tests, was tested for everything under the sun and has been on imuran, cyclosporin and has been on prednisone for over a year !!
The following user gives a hug of support to Kboyle13: ljw359 (11-06-2011)
Hi there just goes to show how things are different between our two countries, you talk about tens of thousands in platelet numbers and us in the u.k. talk in hundreds our platelet count between 140 and 400 is the ideal amount. have a nice day j jim
please be very carefull when talking about spleen removal, once removed there is no way it can be put back, medication is [ in my opinion ] the only way to remedy the problem, any organ removal is the last resort. I have found the drug prednisalone to be very effective, for the second time this year i am on these tablets and find they work very well, i am taking 12x5mg tablets a day [ all at once ] and i will find a marked improvment in one week, take care j jim