My platelets are always low. Drs dont know

Hello,
I am posting because for years I have struggled with some kind of mystery illness. I have joint pain in my fingers, balance issues, low grade depression, aches in the body, fatigue, and sleep issues. I have had on and off auto immune blood markers, but I have seen 4 rheumatologists over the years who cant come up with a diagnosis.

I have always had low platelets for the last 10 years, last platelet count was 114 or 120. I know this may not be low for people here, but I just dont know why and the Drs dont seem to think much of it.

Should I ask for specific tests to help determine the problem?

When I was a kid I had a blood disease that gave me red dots all over my body, but my mom doesnt remember what it was.
Any ideas would be great.
Thank you,
David

David:

There really is no reason to be concerned with your counts. ITP isn't even considered to be a diagnosis unless counts are consistently below 100k. There isn't anything that they can or should do at this point. Doctors do not treat unless counts get below 20k or 30k because the treatments can be harsh. Also, counts above those numbers are safe for daily living.

As for the other symptoms....I can tell you that some autoimmune disorders can take years to develop enough to be diagnosed. I've been there. I had physical symptoms like yours for a while and the labs just didn't define any specific disorder. I did have a doctor who monitored me. I had an elevated ANA and SED rate, among other things, but not enough to meet any criteria. Eventually, I was diagnosed with Lupus. I had a feeling I was headed there and kept hoping it wouldn't happen. When it did, my life changed a lot. I know it's hard to not have a diagnosis, but it's even harder when you get one. I was happy every time I left his office and he told me that I didn't have Lupus. I wasn't happy the day that I found out that I did.

Hopefully, you have a doctor that helps you manage the symptoms. That's about all you can do for now. Keep fighting for yourself and make sure they test you periodically.

David, the low grade depression, aches in the body, fatigue, and sleep issues could possibly be related to sleep apnea. It wouldn't hurt to ask if a sleep study might be in order. Of course, that is only one of many possibilities.

Balance issues, unless related to neuropathy in your feet, are usually an inner ear problem. The Vestibular Disorders Association lists 24 vestibular disorders that include autoimmune inner ear disease (AIED); infection; the accumulation of a kind of tissue debris deep within the inner ear (BPPV); and more. I would check with an ENT if you have not already done so.

Sandi,
Thank you for this information. I dont know much about platelets so I appreciate the discussion and that you can relate to what I have been going through. I wont continue to post here as I know it is just for platelet disorders, but for almost 10 years I have been having an increase in symptoms as you say.

Have had on and off ANA antibodies, RNP antibodies, DNA antibodies, Anticardiolipic antibodies, low C3 C4, TPO antibodies, thinning of hair (when I have gotten ill), sleep insomnia problems, joint pain, canker sores, sinus infections on and off depression, then anxiety, and weight loss. Always have gotten worse right after getting sick or stress. Just not normal for a 34 year old male to have this. My most recent rheumatologist has called it autoimmune phenomenon.

Do you do anything diet specific for this condition?

Rob,
Thanks for the suggestion, I have been through all of the ENT route, seems clear. I did order a sleap apnea test so I appreciate the confirmation here. Its a piece of machinery that I take home I guess, not clear just yet if this is a sleep study.

David:

Wow. You do seem to have many of the Lupus criteria. And the doctor said you don't have Lupus based on all of that? It doesn't seem like such a phenomena to me. I'm not a doctor but I am very familiar with Lupus criteria. It also looks like a possible thyroid issue. I assume you've had your TSH tested.

Here they are. You only need four for a possible Lupus diagnosis.

1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly

2. Discoid rash – a rash that appears as red, raised, disk-shaped patches

3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse

4. Oral ulcers – sores appearing in the mouth

5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed

6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)

7. Kidney disorder – persistent protein or cellular casts in the urine

8. Neurological disorder – seizures or psychosis

9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)

10. Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies

11. Abnormal antinuclear antibody (ANA)

There is a Lupus section near the bottom of the main discussion page. I think you qualify to post here.

I have sleep apnea and I had to go to their facility for two nights. Maybe they can do them from homes now. It probably is a study since they can't just give a C-Pap without testing you first.

I have done so many tests, thyroid included. It was out for a while, I was skinny with Hypothyroidism which baffled everyone, but again thats the way it has been going. No clear cut answers as of yet, just abnormal antibodies that come and go.

Antibodies do come and go. But if a patient has specific antibodies, you don't not give a diagnosis because the antibodies went away. When I was diagnosed, I had an elevated ANA, elevated SED, low C3 and C4, Anticardiolipin antibodies and an elevated dsDNA. Physical symptoms were myalgia, joint pain, extreme fatigue, and feeling like I had the flu. I was diagnosed based on that and it's clear that I met the criteria. I've had antibody tests since then that have been negative, but no one has taken away the diagnosis. Over the years I've accumulated even more symptoms, so without a doubt, I do have Lupus. Your labs and symptoms are pretty comparable to mine. You need to take copies of all labs and see a new doctor. No one should ever push for that diagnosis if it isn't clear that they have it, but if you do have it and are not treated, things can get much worse.

As for the thyroid, a person can have antibodies but not have thyroid problems if the TSH is normal. Antibodies can be present and never cause a problem, but it is something that should be monitored. My daughter has Graves Disease which wasn't diagnosed until she was at a critical stage with a huge goiter and some heart problems. The antibodies are controversial though...some articles I've read have stated that antibodies can affect the way a person feels, even if the TSH is normal. You won't get any doctors to agree or treat it though.

David,

It wasn't clear to me, but did you mean that the ENT could not find a problem?
AIED is rare, and easily missed. It more often presents with bilateral hearing loss and/or tinnitus.
Still, loss of balance with positive ANA and anticardiolipin antibodies seems pretty suggestive of AIED, especially in the absence of any other etiology. Worth mentioning to your next rheumatologist.

american-hearing.org/disorders/autoimmune-inner-ear-disease-aied/

Possible, Rob, but I also have chronic sinus problems and loss of balance. I've seen an ENT and have some minor issues that need surgery, but the procedures are not very effective so I'm not doing it. My loss of balance is likely due to loss of sensation in my feet and possibly damage from stenosis. My doctors just shrug so I have to guess. It's hard to ever get clear answers when there are so many issues involved. They can't separate them.

I also have hearing loss but that is due to otosclerosis, not an inner ear problem.

The dsDNA is pretty specific for Lupus, along with the other labs. I wouldn't presume to diagnose him, but his doctors should take a second look. They might be missing the big picture.

Thanks Rob for the tip. Ive gone through a good deal of tests to see if I had Meneires but they didnt know. They shrugged their shoulders, but i do have ringing, rumbling, and dizziness.

The dizziness is also accompanied sometimes with anxiety so I cant quite tell. Its been a journey and I appreciate the idea. I will bring this up as well.

Hello Sandi,
I have seen 4 rheumatologists over 7 years, how many did it take you? My last Rheumatologist said because I have have never had a high Sed Rate it was inconclusive but agreed something was going on. Whenever I am super fatigued, or feel terrible I would ask for them to run these labs and they would come up positive. Then when I come back in a few months later they go away.

This last round of symptoms were much worse, but its been a grind trying to see Drs. It takes a long time as it is getting more challenging

Sandi,
Have you ever tried a specific diet to combat lupus?

It took two Rheumatologists before I was diagnosed. The first one said I looked fine and sent me on my way. The second one was much better and monitored me every 3 or 4 months. Since I was diagnosed though, I've had about 8 or 9 Rheumatologists. I changed either because they moved, or because I decided to fire them. I just lost my last one and have to see a new one again, same office.

So the hold up on the diagnosis is the SED rate? Ridiculous. Mine goes up and down nd does not correspond to disease activity. That's the problem with Rheumatologists, many do not know what they are doing. I had one Rheumatologist who told me that neuropathy was not a symptom of Lupus. She told me that I probably had MS and walked out the door. She got fired. Neurpathy IS a symptom of Lupus.

As for diet, I just started one on Monday. I went all organic. No sugar, no gluten. For lunch I've been eating butter lettuce, baby spinach, and dandelion with Hemp Oil and Apple Cider Vinegar dressing. Dinner is Quinoa and broccoli. I need more recipes!

I did a Paleo diet a few years ago for a few months and it helped. I had to stop due to a family problem with my Mom and just never got back to it. It's hard to do.

dsurf, if you happen to have IBS problems, then I think diet might help if you can get your intestines calmed down. Any injury or inflammation in your body can kick off the lupus autoimmune response. When I resolved 40+ years of very bad IBS by figuring out I had fructose malabsorption and going on the low FODMAP diet, my life changed a lot for the better and I believe it contributed significantly to my ITP and lupus remission.
Erica