ITP

Hi my name is sam and im new to this site this is my second time to write this i dont think anyone got my first post iv had ITP for 3.years now i found out a had it while pregnent on my daughter and ever since my platelets have been dropping im wondering can anyone help as im still trying to figure all this out iv been tired 3 years now find it hard to consentrate, and feel dizzy i sleep way to long to feel like this i get early nights and try my best to eat healthy but the tiredness is killing me i feel like my body goes into shut down mode and dont
Have Any enurgy to do anything i feel like im trapped in an old womens body every time i tell my doctor how im feeling and could it be the ITP causing me to feel like this she says it has nothing to do with it and that im a young mum and have a busy lifestyle but i no my body is not right does anyone feel like this??

While there are lots of people enrolled on the site, very few people write in. Be patient with this wonderful group of people. Are you on steroids or any other medication that could be impacting how you feel? Others have written that when their counts are low they feel very tired and fatigued.

Hi emilyk thanks for getting back to me im really lost on this site no im not on.anything at all im after getting my bloods done agen the results are bk next fri so if there lower agen maby thats wat the tiredness is its just strange that my doctor says ITP has nothing to do with tiredness hoping i can get some help for wen i go bk to the doctor next week ill be able to have a few notes for her

I would have to disagree with your doctor! My 18 yo daughter has ITP with very low counts. Fatigue is one of her major symptoms. I did not realize how much of an issue the fatigue was until the times she had bleeding symptoms and required treatment. When her counts are up she is a different kid. Her hematologist told me that early in his career he was a little dismissive of fatigue as a symptom, but as time has gone on he sees how much a part of ITP fatigue is. My understanding is the fatigue is not so much from the low platelet count as the autoimmune response which is causing the low counts. Your body is in essence fighting with itself. You are describing a very real symptom. My daughter 's doctors alway ask her how fatigue is affecting her lifestyle as a treatment consideration.

sammaxwell when was the last time you had a full thyroid panel (blood work) done?

(I did see your other post but it was in a thread someone else had started and I wasn't sure you would find it again - better now that you have started your own thread).

Hi melinda thanks for getting back my doctor has giving me an over all bloods test to check for everything thyroid aswell my results are back on fri so im just waiting

Thanks terric14 for replying im living like this 3 years now and i always felt like my blood disorder was the cause so wen my doctor told me many of times that it has nothing to do with ITP iv just been trying to get on with it i dont no how many times iv cried just feeling so so tired its unreal and iv lost count of how many times iv been the doctor nearly begging asking to give me something she says im a busy mum that im gonna get tired, but im sorry to hear ur daughter suffers from the same thing,and so gratfull for the info does ur daughter take anything for her fatigue? And id be greatfull of any tips for the doctors on Friday i get so nervous and never say anything to them.

sammaxwell I'm glad to hear thyroid was included. I just got mine done today and waiting the results. Hope you get good news.

Your doctor is very wrong. It is now accepted by the experts that fatigue is one of the symptoms of ITP. Some people have sleepiness where a nap helps and others don't. Fatigue, not of the sleepiness type, was my first symptom of ITP. I would feels so exhausted doing the smallest thing that I had to sit down all the time. Nobody really knows what causes it but it is real. I would suggest that you find a haematologist who is familiar with ITP. They would be able to help you.

Also now you know that it's not just you, you know that you need to take more rests. I found that doing things more slowly helped. For example, instead of rushing round cleaning the house, I'd know that it would take me longer and I'd factor that into my day then I would feel more in control and not like I was failing at everything. I know it's hard when you have children but still there are some changes that you can make. Be kind to yourself.

Ann thank u sooo much i feel so much better i have been so down about this tiredness it like u efects everything i do im so glad that im not on my own with this im back at the doctors on Friday to get my blood results im going to have a chat with her then do u no if there is anything the
Doctor could give me for fatigue??

There isn't anything they can do for fatigue. I wish! Sometimes a low Vitamin level can cause it, so you might want to check and see if you've been tested for that.

I have had a little luck with fatigue in the past by taking B6 and B12.

The only thing they can do is treat your count to get it higher. You haven't said what your counts are like. I find with counts below 100 I feel tired, with counts below about 30 I feel totally exhausted.

If you are going to treat your ITP then you need to choose the treatment carefully because some treatments make you feel worse! Nplate was my savious and eventually got me into a sort of remission so I no longer need to treat and have a good count albeit not a normal one.

Sam..I have found most doctors poo poo the idea of low platelets causing fatigue. Like Ann I have had to learn to live life at a slower pace and can assure you that whenever my count is below 30 I am much more tired.

As was already said the only thing that helps the fatigue in my daughters case is the counts going up.

Her situation is my different then yours, she is a high school senior. School does not always come easy to her and to her credit she really challenged herself with her course load fall semester. I was worried that fatigue and inability to concentrate would drag her down fall semester but she pulled it off. However that is much different than caring for young children. When my kids were little I was tired and that is without any underlying health issues. I cannot imagine caring for kids with the degree of fatigue that I have seen my daughter struggle with. My heart goes out to you.

My last count was 84 ann im so so tired im bk in the doctor today to get my results on my bloods agen ill get on later and let use now how it goes thanks so my girls for all the help

Sam, did I miss what treatments you have had? Are your platelets usually in the 80s?

Hi karenr yes they have been in the 80s nearly 3 years now iv been bk to the doctor today she had
all my blood results she said my platelets are 85 and said i have a vitamin D deficiency and also she needs to check my lupus agen that shes not shur about that result i asked her could she put me on mediction for the itp she said no that my plates are fine no need to take anything that we are born with way to many platelets and we dont need some of them so she sent me packing and told me to buy a bottle of vitamin d in the cemist i was so upset all day and confused agen

It's true that no doctor will treat a count of 80, mine are hovering around there too just now. Almost everyone has low vitamin D so it's a good idea to take something for that.

What was the doubt with the lupus tests? Was something positive? Have you also been tested for antiphospholipid syndrome too? That should be done with ITP.

Im not shur ann if she checked me for that and the lupus test im not shur agen she just said ill have.to get another test shes not great at explaining things to me i dont even no wat lupus is i thought maby she would just give me somthing for the vitamin d im just going to have to life with this tiredness and start eating really good foods and will boost my enurgy do u find ttired with ur platlets in the 80s??

Sam - everyone is different, but most do not feel tired with counts in the 80's. A count of 100 is considered to be normal. Sometimes there are other causes. A low Vitamin D level can cause fatigue so maybe that is contributing to it. Usually if the level is too low though, they will give a prescription instead of just telling you to get some at the pharmacy. Try it though and see if it helps.

Do you know what the results of your thyroid tests were? Did she say you were in the normal range Sam?

I have to agree. Exhausted all the time, but it makes sense. In essence ITP is like having a permanent flu. Your body is gearing up to fight itself and the immune response is the same.

No melinda im bk agen next week to get more bloods done and im going bk to the doc week after that im gonna ask her

Sam I don't know what country you are in but can you get copies of your test results? I was diagnosed ITP years ago and then in 2003[?,how quickly I forget because it all runs together] with Graves Disease - my husband would take my test results and keep track of them for me so that I would know what my count was and if/how much pred, and then when Graves kicked in he kept track of my thyroid levels. It is nice to be able to look at a chart and see what is/has been going on. By doing the chart I figured out at what TSH # I am more comfortable. You might want to do something like that too so you know how you are doing platelet-wise & med-wise.

Kyndig, saying "ITP is like have a permanent flu" do you mean one feels ill all the time? I never felt exhausted or fatigued if my count was below the low norm. But I'll tell you, this darn thyroid has about done me in, vile little gland.

Melinda what came first for you graves or ITP. My son has had graves on Mmi for 2 years and recently found low platelets. Off meds thyroid is still with in normal range but he is so tired and crabby telling me his thyroid of. Would love to hear your experience.

Mom2 I was diagnosed with ITP in the spring of 1989 and Graves in 2003, so a good length of time between the 2 - my endocrinologist & hematologist got together and decided no to anti-thyroid meds so I had RAI - now on Synthroid.

What is his lab showing for normal range? My lab shows the top limit for TSH as 5.0 but according to the American Association of Clinical Endocrinologists [AACE] the range should be 0.5-3.0 and that is what my endocrinologist uses - now if I would ask my PCP he would give me the old range. Unfortunately I cannot find the bookmark for that, sorry.

Joe before going hyperthyroid with a suppressed TSH, His T4 would be 1.8 and then tsh normal then tsh low and t4 normal. It was a roller coaster ride of subclinical symptoms and now he is getting a thyroidectomy in 2 week. I hope all is well and Sorry for the late response.