Purpura but platelets are @180 ???

Hello how are you guys, been on here a few times today I started getting blood spots today, I'm usually good at telling what number they are by the intensity of spots and how quick they fade, noticed them when I barely itched,my gp suggested a trip to hospital to check it out. I was guessing they were possibly 40 but how quick they came and by how long they lasted so I was more then surprised when the doctor came in and said my platelets are 182! I gawped at him and asked him to explain why I was having symptoms, he couldn't. I was pissed, why would u think this would happen. How am i meant to know if they are low?Also I'm having a stressful time at the moment as for the past year have been feeling tired and weak sorta and the docs test all come back normal, had MRI which is normal and good bar a few non specific t2 foci but no substantial problems, arrrrgh I feel like shaking some of the docs. Really I know I've possibly another immune problem as its not anxiety had that ut anyway if anyone has any ideas about why my platelets are normal(highest since a year ago) and I'm having purpura that I usually find with low counts? Is it stress. Additional tests vit d slightly low and thyroid went funny a few times but is normal now. Thanks

Maybe your platelets were already recovering when you got the blood draw? I think they can fluctuate pretty rapidly.
Erica

I have purpura when my counts are below 39 usually. However when my dad was here who does not have itp I noticed that he has some around his face which I commonly have, so maybe sometimes it's not always itp related maybe sometimes genetic

I have often said that symptoms are not always a good indication of counts. A person can think they have a good handle on it and always know what their body is doing, but ITP can throw a curve ball once in a while. I was once covered in purpura with counts of 50 which was very abnormal for me. I chalked it up to a flukey experience and went on with life.

You can't always know if counts are low. Sometimes symptoms don't appear until under 5k. If that happens and you don't know it, then you are probably no worse for wear since you have no symptoms. If symptoms appear at higher counts, that's okay too. It never hurts to get a count done.

Low D can cause muscle weakness if it goes on long enough. Have you been treated?

Thanks for replies.
I'm not sure what to think now haha, thanks guys. Could be a genetic thing but I don't know.
Sandi, yes I took like 20000 units of vit d for a few weeks.I did stop for a while. Iv been feeling not great lately but I can't be specific about how i feel. I'm pretty certain there is some other autoimmune thing going on here. Just cos my thyroid went under active for like a week and then it went back to normal. Same with vit d. It's quite frustrating really. I've been feeling tired a lot and I feel like head butting some docs cos they are unaware of what I feel. I haven't taken vit d for a while so I'm going to take a few more. Thing is my symptoms are all over the shop. Tiredness and slight dizziness off balance a bit. Thing is I've had Itp for years with long periods of remission and I coped with it well and had a lot of energy regardless and never worried about it cos I felt good.but cos I feel sick it's driving me crazy. I do panic about fainting and I wonder now whether I have got some sort of anxiety thing going on. Hope you are keeping good to sandi. I appreciate the information that you put up

I have had those same symptoms the past few months. It turned out that I have low Magnesium. Even though it was 1.5 which is the lowest level on the reference range, I was given an IV of Magnesium. I have not had a follow-up on it yet, so I don't know if it bumped me up but symptoms have not improved. I have extreme weakness, fatigue, hyper-mobility, loss of coordination and balance, dizziness and insomnia....all symptoms of low Magnesium.

I also have Lupus though, so it's easy for me and the doctors to chalk everything up to that. Since I've had vitamin deficiencies before though and suffered with symptoms for years before discovering the problem, I try to really do my research. I have found out that if Magnesium is low in the blood, it is low in the cells and can take months of Magnesium supplements to see improvement in symptoms. It's not a quick fix. Doctors tend to believe that as long as your level is in range, even low normal, you are fine. Not true.

You also cannot just take any type of Magnesium. Most supplements sold in drug stores are Magnesium Oxide, and that is the least absorbable kind there is. I'd been taking that daily for a long time and apparently, it wasn't helping at all. A lot of people with autoimmune disorders have problems absorbing vitamins and minerals from food and basic pills, so you have to get mega-absorbable brands. I've just learned that when buying Magnesium, any type that ends in "ide" is the worst, and anything that ends in "ate" is the best. Magnesium Orotate is the most absorbable.

I'm telling you this because you have to check things out for yourself. Get copies of labs and check out your results. If anything is borderline high or borderline low, research it and find out the symptoms. Request that vitamin and mineral levels be checked because those are often overlooked or not thought of as a potential problem. It took me two years to find the reason behind my RLS, and it was something that was overlooked by 3 of my doctors. I had low ferritin which was not considered a problem because it hadn't affected my red cell count yet. When I researched the symptoms of low ferritin, I found that RLS was a possible symptom. None of my doctors knew that and once again, blamed Lupus. I started my own iron supplements and within 2 weeks, the RLS was gone and I could finally sleep more than 2 or 3 hours a night.

I know how frustrating it is when you can't find what's wrong. You can't really blame doctors though because they really can't know everything. They know their specialties but that is just the tip of the iceberg. We are very lucky in this day and age to have so much information available; that is a huge advantage.

I didn't mean to be so long-winded, but I wanted to let you know that instead of looking for the big things like Lupus and MS and such, start with the smaller, simple things and see if anything there might be the problem.

I hope you get answers soon and start to feel better! Don't give up hope! You may need to find a doctor willing to listen! I know when I was finally diagnosed with Graves' disease it took 3 doctors. I was very shaky and anxious all the time so they thought it was anxiety and tried to give me anti depressants. It was very frustrating and stressful not knowing what was going on but the docs not listening, but finally one did. She saw the tremor in my hands right away and knew. My stress level went way down knowing that " I wasn't crazy."

Also I had petichae all over my legs on Saturday but my count today was 198 so I am lost with you on this question!

Stay calm and keep searching for answers you can do it!

You are most definetly right there. I feel like my symptoms are varied and I keep looking for one specific answer but most of my bloodworm comes back pretty much normal.you are so right I'm looking at bigger things then looking at the smaller things. I know I'm stressing myself into something if I'm not careful and i guess worrying myself is not going to get me anywhere. My symptoms of fatigue started a year along with other vague but annoying symptoms appeared. It's hard to explain to doctors(who by the way are all nice) because on their lab reports I'm healthy bar drop in platelets. Even they are up near the 200s. It's interesting you talk about magnesium, cos that was next on my list. God I sound obsessed but its because I so want to feel as good as I can. The only thing really is the vitamin d going funny and to be fair all the women on my mothers side have a thyroid problem and I'm pretty sure I thyroid is playing an issue. My MRI came back normal bar a few spots(funny how my thinking is, I focused on the spots but they told me its common)
I feel for you that doctors tend to put things down to the lupus which is fair enough but I do believe that there are certain factors that can make you feel less well. Like obviously we have all weakened immunity but the thing is its like a puzzle. We need to start somewhere and eliminate things. After research I know that there is a lot of factors that lead me to this problem and I think even if i had been the most healthy person ever and done everything by the book and taken supplements I feel that genetics would have led me to some immune problem regardless. So sometimes I try not to be so hard on myself that I got itp at 13. To be fair, i was treated by Ivig and it stayed away for six years. I think we can only go from where we are try at least to keep ourselves healthy and another thing I'm gonna do is start excercise. I'm terribly useless and have no time for it but I think thirty minutes of excercise to begin with would be good. Oh and Yoga looks good too. And positive thinking.
I'm going to get all my information and lab tests for myself, funny you mention that I asked for a copy this week cos I could t quite believe that I'd normal platelet level. I will get my magnesium tested next. Thanks for the info, sandi.

Vdeutsch85. Thank you I hope so too. I just get to the bottom of this. Glad u got it sorted with the graves. Two of my aunts have it. One thought she was actually going crazy until they found it but it took a while cos at first it was fine but they eventually found out she was hyperthyroid.yes, those red dots are just annoying, I see them and immediately think its low. Well that's fantastic they are 198. Me and you feel a great sense of relief so. I think at least my docs are doing a good few tests and eliminating things slowly so maybe it'll make me less anxious. Aw you guys are all great.

Excuse the spelling mistakes , I get carried away when I'm typing :laugh:

Def keep having your thyroid levels checked especially if you have that gut instinct and make sure they check T3 and T4. Im sure you probably know this from your family members but wanted to let you know just in case. I know from my experience they were always fluctuating and I was never off the charts high which they kind of expected me to be just slightly high.

I'm with you on the exercise part. Not to make excuses but I felt so tired and so achy from 5 months that I could barely drive. However I'm feeling more like my old self did a 5k walk last weekend and am ready to begin exercising on a regular basis. I agree I don't have control over the disease but can keep my body as healthy as possible.

This has happened twice now, where I ave petichae on my legs but my count is 171,strange strange no other synptoms

Petechiae were always a sign of a low count on my ITP teen, until they weren't. For some reason, even in remission, ITPers can get petechiae at good counts. (Others get them, too. That's what hickies really are, and I once had petechiae around my eyes from vomiting, but I don't have low platelets.) To keep the spots and nosebleeds at bay, my teen started taking some extra vitamin C. Doesn't help the counts, but seems to help with vessel integrity. And, for most folks, it's otherwise good for you. Too much can cause loose stools, an unpleasant but effective signal to lower the dose a bit.
Norma

Thank you for sharing! I have petichae all over my body and have been freaking out all day! My counts have been good for about five weeks but have had random petichae even at 198. However, this is probably the worst I have seen. It's finally warm here so I've been in shorts and my malteses have been climbing and scratching on me....so maybe that's part of it, I do not know. I will get a CBC on tues. I will also up my vitamin c levels to see, that seems easy enough!

Well my levels were at 4.... Def explains all of the petichae

Oh I hope they go up soon. What treatment are you on?

I am on Nplate and cyclosporine....however doctor did not give me a shot last week ( said my counts were over 150) well now I know much better! It def caused a crash

Well I hope the counts have increased. There are so many different options that you can go for now.

Me petichae have gotten slightly better. Will get checked on wed. The itp specialist agree that we believe Nplate does work for me when given correctly.

Well that's great, it's great when you get a treatment that actually works. Hopefully now that'll put an end to the low counts