Joining the ITP bandwagon :0

After my Hemo appointment she really feels like I have ITP. Did an exam and further blood tests. I go back to her again in a month but I had a couple of questions I was wondering you guys could answer. My counts have been hanging out under 100 or just around that since the end of October. So no need for treatment yet, but she said to keep an eye out for symptoms..etc. She informed me to especially keep an eye out when I'm sick, since when your immunity is down, and you have low platelets to begin with that they can go lower around that time. So...my question is...can having low platelets also make you more prone to getting sick? I feel another cold coming on and feel like I've been easily getting them here and there. Also, does anyone feel cold more often? Like temperature wise? I don't have a fever...but overall I seem to be feeling more cold then others around me! Thanks guys!

Welcome, Megan. Like you I have counts that hover around 100, though often a bit closer to 110 or even 120 recently (next platelet count is later this month, and I'm hoping I'm again in the triple digits). I've not noticed being ill more often or being more prone to catching a cold or having a worse course with a disease since diagnosis several years ago.

One thought I've had on this subject is that regularly going to see physicians, in particular in hospitals, means greatly increased exposure to the viruses and such, which could easily lead to becoming ill more often. This is a well-known phenomenon in oncology, and folks with ITP are often in such facilities during evaluation/treatment.

As for feeling cold, I've noticed that but am not sure about the cause.

Megan I considered myself in a remission when my count was going between 85k and 125k for about 10 years. I forgot about ITP during those years except when it was time for a physical and blood work.

When I had the flu [the real flu] my count went up to 401k - for some counts drop when sick, for some counts don't drop when sick, for some counts stay stable and probably most of us don't know what our count does when we are sick. You just don't know.

Regarding cold - when was the last time you had a thyroid panel done?

Hi Megan. Having ITP does not cause a person to get sick more often. Having ITP does not mean that you have a low immune system; it's more like the immune system is a bit overactive. Sometimes the immunosuppressive treatments can cause people to be more susceptible to illness, but as a general rule, ITP does not.

Your counts are great! ITP is now classified as a platelet count consistently below 100k, so you're sort of borderline. As Melinda said, sometimes illnesses can cause counts to go up...you never know.

Thanks for clearing up the questions regarding the immune system...was confused about all that!

It could be allergies too! It seems to be hanging around those symptoms for now. As for always being cold tho...grr..wish that would change. Lol. Melinda you asked about the tyroid tests. My regular doctor had the TSH tested back before she reffered me to a Hemo. It was in the normal range. After researching some on my own , I did read that further tests could be done. I asked the Hemo about this and she said my other counts would be out of whack if it was a thyroid issuse? Does that sound right with your experience with it?

What other counts would be out of whack? Thyroid issues usually don't affect anything on a typical CBC.

Many people here have complained of cold sensitivity over the years. I never felt that when my counts were down, but have experienced extreme temperature sensitivity since being diagnosed with Lupus. I've researched it for years and could never find an explanation. My temperature usually runs low, around 97 degrees.

She did not specify, but basically said other things would have shown signs of it. I had said "like on all the other blood tests. .etc" and she said yes and we sorta moved on. I figured it was either the TSH count and or the remaining CBC results she was referring to. Is a Hematologist usually the only doctor to run a tyroid panel test? (Shes in by Chicago and I go back at the end if July) do you think my primary would test for it?

I read a CVID forum and they all say that their body temperature is always low. I wonder if there's a link. For me, my hands and feet are always cold and I often have the heating on at home way after everyone else has turned their off for the summer. I never thought much of it.

Any doctor could order a thyroid panel. Always worth doing every now and then.

She's probably referring to the TSH panel. The CBC doesn't show thyroid problems. An Endocrinologist deals with thyroid issues. That is not the Hemo's thing.

I often wonder if autoimmune issues in general can cause the cold sensitivity. It seems to be only legitimately linked with thyroid issues even though people with other disorders complain of it too. The only thing I've ever come up with is Wilson's Syndrome which isn't even taken seriously by doctors. Any time I'm cold, I feel like I have a fever. If I do have a fever, even around 99, I feel like my temp is around 103. If I'm cold and put socks on, in minutes I start to sweat like crazy.

Yes! My hands and feet are the worst. Sometimes its all over but primarily its them. And my body temp is usually around 96-97. I was wondering if maybe it was Raynauds (sp?) since my grandmother had that, but the ANA tests etc. that the Hemo ordered came back neg. OK good to hear, I'm going to call my primary and see about having it checked out.
Thanks!

Good to know...maybe my primary can refer me to an Endocrinologist. I know what you mean about the socks. I never used to wear em like I do now!

A whacky thyroid doesn't mess with other blood results that I know of [and I've had a whacky thyroid for 13 years]. Not sure what your doctor means Megan.

I would doubt an endocrinologist would see you without reason, if your thyroid panel [blood work] comes back fine then there's no reason to see an endo.

We all should have a thyroid panel with our yearly physical!

Personally if I were you I would jump off the "ITP bandwagon" - it's not one you want to be on

This is a good one on Raynaud's - Raynaud's isn't just feeling cold.
www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/definition/con-20022916

My daughter had a severe marked cold intolerance this past winter - her counts were very low at the time. Previous years the kid was like a furnace, we would be out together in the winter and I would be bundled, coat and gloves and she would have on a sweatshirt and be the one radiating heat and I would be cold (and I like winter and do not have a cold intolerance). This past winter she was always cold and could not really stand to be outside. Her platelet counts were very low all winter (<5). The hematologist said he had not really heard that before but did not discount it either. But she was cold - not just her hands and feet but always wrapped up in a blanket.

Also this was a kid who was never sick, when she was diagnosed with ITP at 16 she had not had a sick visit to the doctor since she was 4. Her counts hovered in the 40-50 range for about a year when they stared to really drop. She has been sick more in the past year than she was in the rest of her life combined. This past winter when her counts were really low she has numerous colds, coughs etc. She never required antibiotics but it was definitely not her norm. I wonder whether the illnesses caused her counts to drop or whether the autoimmune issues contributed to her being sick, or if it was all just coincidence.

I agree Melinda...in fact I have another question or you guys. I've had the lil red dots before, nothing what I've heard some you having. Just lil clusters of them would sprout out across my chest. Or maybe one or two here and there on my leg or arm. Driving home just now I have the most I've ever had across my chest, and up twords my neck. Most of the time I hear people say they have it on their arms and legs...is it common to have em sprout on the chest? Ive had a blood blister pop up in my mouth here and there, but i figured i had bit my lip. So when do you know when its time to contact a doctor? I know I'm not an emergency case right now. But for future reference so I know! I guess since I never had this many , I didn't know what to ask the Hemo really when I was there. Thanks guys!

Teri- That does sound like it could all be linked!

I've asked the same question, here and in doctor's offices. There doesn't seem to be a simple set of criteria. From what I gathered, bleeding from the nose or gums that does not stop, blood in urine, stool, or sputum, large spontaneous bruises, and large swaths of red/brown spot-like bruises are all good reasons to call your doctor.

I don't know how common chest bruising is, but I've had that. I've had petechial rashes that look like rope burn across my chest and flanks. One friend suggested I keep those out of site lest people assume I had odd hobbies. Even with those rashes my counts were not at an emergency level, so I've gotten used to the idea that I just bruise impressively.

Some people here have managed to arrange with their docs to have a standing order for a platelet count. You can always contact your doctor's office and ask if you should be checked.

My main symptoms were very heavy periods and very large, spontaneous black bruises. I had petechiae but never anything major. If I had just a few, I wouldn't worry about it at all. That can happen for many unrelated ITP things. But, when in doubt, check it out.

Ack...maybe that explains my heavier then usual period today. I didn't even know that was a symptom! Good idea on asking about the standing order. Thanks again guys

Hi me again! I have to call and schedule an appointment for next month. I'll be gettig an ultrasound done and some other blood tests. In the meantime while i wait to talk to someone. Can anyone explain this result? It was the one thing im seeing out of range. Prohrombin time standard range is listed as 9.4 - 12.6 mine was 13.5 and the INR ratio was 1.2 . Thanks for any insight on this!

Those tests measure how quickly blood clots. Your results seem to contradict each other, so better to ask your doctor. A low INR can indicate that blood clots too fast.

www.mayoclinic.org/tests-procedures/prothrombin-time/basics/results/PRC-20013300

The normal range for the INR is 0.8 - 1.2 according to Wikipedia and < 1.3 according to Medscape, without warfarin (2.0 - 3.0 for people on blood thinners). So your clotting time is a little slow according to the PT test; it is on the slow end of normal according to the INR. This is not a measure of platelet activity; platelets are removed from the blood sample before the PT and INR are measured.

INR 0.9-1.3 in the UK