Hello. My names Ryland and I was diagnosed with ITP in April. Since then I've been reading the articles on this website and the links that have been provided on this website. Since this is my first post here I'll summarize my ITP journey thus-far, before addressing the topic. (If you're solely interested in the topic I bolded the section where I address it.)
I ended up in emergency after experiencing horrifying nose bleeds for a long time. By the time I did anything about the symptoms I was covered in petechia and bruises. Lips, nose, arms, chest, just everywhere. The platelet count I started this whole experience with was a 10. I was given IVIG. Spent a week in hospital. Sent home without treatment. A week went by. My count dropped. I was prescribed Prednisone 75mg. Two weeks went by in which I learn that I'm basically disabled on Prednisone.
In may my appendix ruptures. I spend a week and a half in hospital due to concerns with the appendix site. It took me a week to start eating again. On the day that I'm released my Hematologist tells me that because of the complications I'm back to square one on the Prednisone Plan. So basically I was on 75 mg of Prednisone for six weeks. and then I was tapered slowly, by 5mg until I reached 50 and then 10 until finished.
The prednisone had maintained my counts at 110 except when I had surgery for my appendix. This is the second week I've been off of the drug. But I continued to read and hear of mixed experiences with prednisone induced remission. My hematologist had a patient who had remitted for less than a week, and another who had 10 years.
I guess Prednisone hit me harder than others? Since I have no idea how others could work on it. If I went for a walk one day then every muscle in my legs would cramp for the next two days. I drank so much gatorade to try to alleviate this. And the mental side was unbearable, I'd become unreasonably upset so easily. So I needed to find something to calm me down. Because after being on Prednisone for so long I was frightened I'd lose all of 2012 to ITP. And if I relapse the only initial option available to me is either IVIG/Prednisone or IVIG/Prednisone/Splenectomy through my current Hematologist.
So I went to see a naturopath. And he did some tests. And he prescribed copper and informed me I was a Histadeliac. I'm putting a lot of hope into this because my Hematologist has seemed to be convinced, and has convinced me, that I'm basically a ticking time bomb, whereas my naturopath has a more positive outlook on this, that the body one has is not the same body from a year ago. I'm pretty emotionally distraught and traumatized, so I needed some positive foundation, so I might be looking at this with too much faith.
Anyhow, the Histadelia meant that I had too many histamines, and that I would experience harsher symptoms due to this.
And the copper deficiency? The naturopath told me why it was important through naturopath dialect. "The body is a whole, of one thing isn't aligned than nothing is" sort of deal. I listened because I needed to listen. But when I got home I googled copper deficiency. And according to google, copper deficiency has lead to thrombocytopenia. It's listed as a rare outcome of copper deficiency, but any possible reason is more comforting than none.
Yes, I know google isn't the most reputable of sources. But has anyone else been tested for copper deficiency?
I only started taking copper two days ago, so I don't think I'll notice any improvements right off the bat. Especially since I'm dealing with Prednisone symptoms still. And I'm aware that this might be too easy of a solution for something like ITP. But I'm going to try.
Yes you have to be careful when you're doing Google searches but if you're careful with the source, you can find creditable articles. Sources such as the centers for national health, publications such as the British Medical Journal, the Merck manual, professional organizations such as the american hematology society or major teaching universities and medical schools.
What I did find interesting, is the relationship to zinc. Because of a family history of macular degeneration they've always recommended that we take zinc supplements. I'll now be checking that there's also copper when I'm taking supplements with zinc.
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra
The naturopath used a machine to determine my levels after I told him about my health concerns. I think is called a biofeedback machine. Basically I held a metal rod in one hand and he poked above a finger nail on the opposite hand. All along he'd adjust dials until the machine responded.
Basically if the machine responds whatever vitamin or mineral he is testing for is out of sync, and then he adjusts it to figure out by what margin. At this point he told me where I was over, under or safe. He then inputed different vials of metals and vitamins into another section of the machine to see if whatever was in the vial would balance me.
So that's how he determined my level of copper to be awfully low. He never gave me a number and I didn't ask for one.
I'm following his instructions in regards to how much copper I take and I have a follow up in November to see how well the copper worked and if I'll need any further naturopathic treatment.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2369
If you have a hemo who has told you that you are a ticking time bomb, I think you need a new doctor. Many patients with ITP survive with chronically low counts, and if you can get yours up, you should be fine. There are quite a few other treatment options that could be discussed.
I would say that Prednisone affects most of us like it did you. I can't even begin to tell you the horror stories I have. I did keep working, and I'm sure my co-workers could tell you what a nut case I was. No one likes the drug.
I have never heard of a copper deficiency being a cause for ITP. Maybe you could follow up with your doctor and see if he'll test that for you?
Do you really believe someone could measure the copper in your blood with that strange technique? How do you think that would work? If he stuck a finger in your belly button and blew in your ear would you believe that would measure the copper in your body?
How about a blood test?
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
Copper Deficiency and Thrombocytopenia?
10 years 3 months ago #27288
Erica you will love this - the mother-in-law of a friend has a machine that tells her what is wrong with someone, and can even do this long distance as my friend is in a different town than her m-i-l. Friend hadn't been feeling well for a while, m-i-l called and said she was going to do a reading - sure enough the problem my friend was having showed up on the machine: she was having prostate problems. Her m-i-l was very serious about all of this!
This happened a couple years ago and we still get a good laugh from it - a female having prostate trouble!
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