Feeling Helpless

Hi everyone, a little about me- I'm 23 years old, no children. Married to an amazing man. I've struggled with symptoms of depression since I was a teenager, but it wasn't until last summer that I saw a new Dr who suggested Bipolar II, not Depression and thus started me on Lamictal, a bipolar medication. My life turned around. For the first time in my life, I felt alive. I loved life, I became assertive. Things got better for me.

In February, my husband told me to tell my Dr about the bruising. I thought I was just being clumsy. But one day I got hurt, and the bruise was nearly black. It didn't make sense because I didn't hurt myself that bad.

Then the blood test came back. 79k in February, 47k in March, and 39 in April. My Dr stopped the Lamictal in February after the first test, and recommended me to a hematologist. I did a bone marrow biopsy on Tuesday and my platelets were at 40-50 (they tested two vials, one being 40k and the other tested at 50k) So I guess the good news is it didn't drop from the 39k a few weeks ago.

Here's the thing. I'm so tired. I talked to my hemotologist and he said low platelets won't cause fatigue. That it might be from my bipolar being untreated. The results of the biopsy came today and he said they results were normal, which makes ITP likely. We are waiting on some more blood tests to come back, but apparently my marrow is making the platelets I need.

But things ... suck... I don't want to do anything. I have been dropping classes and giving my shifts at work away to other people. I'm facing a move this month out of state. I can't tell my husband about school or work. The hematologist says next week he will have the rest of the blood tests, but if it's ITP, he will start me on prednisone. Then if the platelets get to a healthy point, I may be able to start the lamictal again. But that could be a long time right?! I don't know how long it takes for the medicine to work and get me back to normal.

I just feel so alone, and sad. And there seems to be nothing I can do about it but try not to feel sorry for myself and get through the day. And I do try to, but it's so hard. I would stay in bed all day if I could.

Any advice anyone? Anyone been through something similar? I know I'm venting, I'm new and noone I know gets it. I'm glad that I'm not really alone and that there is hope.

Lorna:

If a person is responsive to it, Prednisone can work pretty quickly. I'd be over 200k in a week. The problem is that some people do not respond to it, and as you drop the Prednisone dose to taper off, platelet counts sometimes drop too. It can be a Merry-Go-Round for a while.

All you can do at this point is wait and see what happens. In the meantime, take one day at a time and try not to worry. There isn't anything you can do to control things right now.

I'm sorry your feeling so badly. Are they sure the Lamictal is the cause of the drop? Is there something else you could take? Definitely sounds like you may need something to ease that adjustment back to no meds. You say your husband is an amazing person. I'd say tell him whats happening and let him help you a bit until your feeling less under the dark cloud that an autoimmune diagnosis can bring. Take him along for moral support when you see your doctors.

Doesn't sound like your hemo has read the new articles, low platelets DO contribute to fatigue. The range in which we notice it seems to be individual. For me, I notice under 30K. You might find some reputable web sites (medical journals, University medical schools,etc) and print some of those articles for him.

I've never done predisone, but based on the stories from others, you might have a serious discussion with the doctor about the bi-polor diagnosis and if predisone is really the right treatment for you. Be very honest about how you're feeling. Admittly pred is the least costly in term of dollars, but not necessarily on the person being treated. If the Lamictal was the cause and you have insurance, maybe one IVIG or Winrho treatment might be the push to reset your system and you might not need another. If you're not having a lot of bleeding symptoms and are staying above 30, you may want to talk to him not treating and seeing if you are truely stabalizing. Many of us do no treatments if we're in the 50K range.

Good point, Bunnie. Prednisone can cause depression so that may not be the best choice for you.

The hematologist is consulting with my psych Dr. They are discussing whether or not this medicine is a good choice for me. After She took me off of Lamictal, she switched me to Lithium because she couldn't find any evidence that it should drop platelets, I didn't respond well to it and she tried Seroquel. At that point, it was time to take another blood test and it was still dropping. She took me off of that and now has me taking Lithium after I told her how bad things are getting. It's nothing though, I want the Lamictal.

My husband is great, but he's an engineering student and thinks like one hehe... he thinks so logically and I'm thinking so emotionally right now that it's hard to talk.

Thanks for the responses, it's good to know that the medicine can work so quickly, I didn't know that. That's hopeful.

I know how u feel, we have all been there, just know that we are all here if u need to talk or even if you just want to vent.

Lorna,
I am not an ITP patient, but mom of an ITP kid. The points about steroids are well-spoken. Be sure to ask your doc about the effects on bipolar/depression. Steroids are cheap and less invasive, and many would say safer, than other treatments. That's all relative, though, when you consider the individual patient. I am on a decadron taper now for a horrible poison ivy reaction, and, while I have to say the energy level decadron gives me at first is amazing (and greater than pred), the disorganized thought process at times, chattering nonstop, inability to sit still and rest, and, at times, irritability, are tough. So are the sweats, sleep disturbance (I don't do well on two hours sleep), and, as I taper, the joint pains and intermittent fatigue. I've put the energy to good use, but was worthless for a few hours yesterday, and my elbows hurt now. I can't imagine dealing with the taper if I was also an ITP patient and bipolar or depressive. Carefully weigh the options.
Norma

Hi Lorna, Glad your heama is talking to your Phsyc doctor about the treatments, be aware the pred prob will do a bad job on your mind and emotions so if you are bipolar it might make it worse while your on it. Itp does cause fatigue nearly everyone coments on it but a lot of doctors say no there is nothing scientific behind it, in otherwords there is nothing written in a book about it. Good luck hun hope you get sorted quickly, there is different treatments out there that react differently with different people you just have to find the one that works well for you.
Julia

Thanks for all of the comments and advice. I've heard that the prednisone can cause symptoms of mania,,, does that mean I could possibly get some energy?

Yes, i remember emptying my conservetory into the garden and cleaning it from top to bottom a few days home after starting pred. I was shattered and jelly legged afterwards but the conservetory was gleeming!
Julia

I never thought it was good energy. I felt shakey; it was like a super caffeine high and it wasn't good. The taper zaps more stength than you can imagine for some people.

There's a fine line between the positive energy type of mania and the scary kind, and the scattered thoughts and agitated feelings are no fun. If I was bipolar or depressive, I think I'd want to discuss other options. I am so ready to be done with this steroid, and I've been miserable on it more than energized. (The kids keep whispering, "Shh. Don't anger the bear!" That should be an indication of how "great" the mania is.)
Norma

Oh that doesn't sound good at all. I'm sorry that it isn't going well for you. How long do you have to take it?

I will be done in two more days, and my family and I will be ready for it to be done and over with.
Norma

I also have depression. I am "untreated" now but that is because of the deplorable state of our health and lack of parity as of yet.

Anyway, there is a GREAT treatment called DBT that is drug free and is used to help mental illness of a variety. They are even using it on Stage 4 lung cancer patients because it is so effective. When I had "the right" insurance, I did it for a while and it helped like nothing else.

It might help you so that you do not have to go back onto meds. Meds can cause blood troubles.