ITP Support Association
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Hi I’m new and have had consistent lowering of platelets, not as low as some here I have seen, and increasing Mpv level. Also Eos is now at 0.0 as well as Ba 0.0

Am curious to whether its worth seeing a hematologist? Not sure where to go or what tests to do. Primary doesnt seem to be very worried about it. Any advice is welcome!

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Hello JennaShi!

No expert here, just the father of a 19 yo daughter who was diagnosed with ITP 4 months ago, I've been researching like crazy, trying to get my head around this condition. From your blood work, its looks like you MAY be just starting to get ITP. Since your MPV is high and platelet count is low, it MIGHT mean your platelets are being marked for destruction by your B cells and your spleen is doing its job. The youngest (newest) platelets are the largest and they get smaller with age. PlateIets only live 8-10 days. I also noticed your WBC count is slightly low. This MIGHT be caused by a recent viral infection (flu like illness) that interfered with your bone marrows ability to produce white cells. It is speculated (its not known for sure) that ITP can be caused by a viral infection, causing your B cells to incorrectly see your platelets as foreign and mark them for destruction. I think this is what caused my daughters illness. She had been having the usual cold-flu symptoms for a couple weeks, nothing serious. She felt run down and tired afterward and we had blood work done to see if she had a thyroid issue and to check her iron levels. They were fine but her platelets were 8,000! She had NO bleeding symptoms of any type! How would we have found out?? Scary. Anyway didn't mean to ramble. I would definitely see a Hematologist, ITP (if its even what you MIGHT have) is not that common, and your Primary may not be familiar with it. Remember, the likely scenario is you have nothing wrong at all, and counts will be normal and your next blood draw! Also, you probably know this already, don't Google too much! Remember, I'm NOT a doctor, just a concerned parent. Take what I say with as many grains of salt as you wish. Hope this helps. Take care!

Eric

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Hi Eric, thank you for sharing! Your information and past experience is very helpful. I am sorry to hear about your daughter, although am glad that you both found out why she wasnt well. So glad she doesnt have thyroid and Iron problems on top if this to deal with. That can be more tricky. Have you figured out how to get her platelets up?

I stumbled upon this group while googling my symptoms 😄, and am very thankful to be able to meet other people who have been struggling with similar symptoms and to learn so much more.

I was diagnosed with Graves at 19, and through RAI later became hypo/ Hashi and since have found that I have antibodies for my parietal cells, am now 29.

My platelets has been decreasing for a year now, and Mpv has been slowly rising as well. However my primary care doctor hasnt been concerned as there have been patients with lower numbers, however it would be nice not to get any lower 😅.

You’re spot on with google haha, it does make a person worry a little more but I find being a good detective is also Important and most definitely agree that often doctors may not know much about what is going on.

I do wonder, have you both looked into the possibility of stabalizi g her immune system? I am just looking into it myself and have been reading a book by Dr. K about hashimotos and he talks about it. Basically in thyroid immune(I do not know if its same for all auto immune or just thyroid) there are certain vitamins such as vD (supplementing vD with K2 is important well as other minerals to absorb VD and calcium) and omega that help support the immune system and the goal is balance out th1 and th2 (finding out if a person is th1 dominant or th2 in order to bring up less dominant also) in order that it stop attacking. Of course its important, Im sure you already know this, to figure out what is low (vitamins/ minerals etc) in the person. But I cant help but have hope that supporting immune system with call off attack on body. I think it can be found online as well. I am just looking into to this, sorry if this isnt new information to you.

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Hi JennaShi,

I'm glad you got a little something from my reply! My daughter does not have thyroid issues (I do, however, I think its Hashimoto's, but I've never been tested. I've been taking levothyroxine for 5 years or so) but she did have mild anemia in her early teens (always had to chew crushed ice at bedtime, I thought that was a myth!). An OTC iron supplement took care of that and she is otherwise in perfect health. When she was first diagnosed, in early March (plts 5,000) she received 4 high doses of dexamethasone (HDD) and her platelets quickly bounced back to normal (184,000), but only stayed up for 3 weeks than began to drop (25,000). She than started rituxan (day 1) and HDD (days 1-4). Rituxan went smoothly, only a VERY minor allergic reaction about 2 hours into the infusion, she was given a little more benedryl and no problems. Platelets bounced back (230,000). A week later she had her next infusion, no issues, took half the time. A week later she had fever, chills, tachycardia and RASH. Went to ER and was then admitted, had many tests for infections, chest x-ray, EKG... all normal (plts 49,000). We think it was serum sickness caused by the rituxan. Given benedryl and started on prednisone 40mg. Rash moved from her back to arms, to chest, to legs and finally to one little patch on her foot then disappeared, without a trace, in 24-36 hours. When I say the rash moved, I mean it disappeared from one place and appeared in the next. She was released from the hospital in 48 hours, like it never even happened (29,000). A week later, still on prednisone (195,000). Four days later (295,000) prednisone lowered to 30mg. Ten days later (263,000) met with new Hemo since she was now home from college. Dr wanted to start prednisone taper immediately. I don't remember the exact ramp, but went from 30 to 0 in about 10 days with no problems. Next count (266,000), a week later (224,000). Had her counts taken more or less weekly since and they have been staying between (260,000-290,000) with NO meds at all. She did not have her 3rd and 4th rituxan infusions since Drs were concerned about an anaphylactic reaction. She has been in Spain since June 2nd, (yeah, minor detail, I'm worried sick, but she was bound and determined to study abroad no matter what) and will return July 16th, she will then meet with Dr to make more plans, maybe rituxan desensitization, we don't know yet. She is having a great time abroad (yes, we had health plans in place before she left and doctors in Spain are well acquainted with ITP, she had two courses of HDD with her just in case). I think the rituxan has kicked in, as it takes from 5-7 weeks to act. She is taking a multivitamin and extra vD, 2000 IU, I believe. Dr said no to vK. So, that's my story, you still awake? ;o) We have been researching autoimmune diets, but have not started any yet. Check out the autoimmune paleo diets if you haven't already, it seems many people have benefited from them. I am going to look at Dr K's books for my own edification, though my thyroid hasn't been an issue.....it just doesn't work anymore. No symptoms at all. Kinda found out about it at my yearly check-up, and was started on levo, no big deal. As for your platelets, I really would see a Hemo, just for peace of mind. All he/she might say is: yes, your platelets are a bit low but don't worry about it. Maybe I'm doing a little mind reading, but your primary care doc seems a little nonchalant. I know, none of my business, I'm just a worrier. I know little about Graves or RAI treatment, maybe slight leukopenia and/or thrombocytopenia are totally normal side effects, I have no clue. I don't believe your low Eos and Ba are any cause for concern, but a Hemo may have better advice ;o) Does your Dr think you may have ITP? If, not what does he/she think is causing your low platelet count? Not trying to pry, just sorta thinking out loud, so to speak. Anyway thank you for replying to my reply. I enjoy sharing knowledge and experiences, it can be of great comfort. I wish you good health.

Eric

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Wow she’s sure been through alot! And I hope things go well for her in Spain, sounds like fun! I am curious why the doctor said no vK, as it helps to absorb the vD and Calcium. Also thats interesting what you had mentioned about your thyroid. i have met one other person on thyroid UK group who thyroid is no longer active. If you were interested in finding out if you have hashimotos you can test for thyroid antibodies (TPO and TGAB). It is also a test you can order online through websites such as STTM. However this lady I mentioned said that her antibodies decreased as her thyroid was no longer active so am unsure if they will show. Thank you for sharing more information with me, And you’re right, my primary care doc does not think much of it and doesnt really seem to want to call it anything or refer me to a hemotologist; i havent yet asked either. I do suspect because i already have one auto immune disease and these have been going down continually. So it could be caused by my immune system or from taking medication. We have to be our own best detectives :)! As far as diet, thats a great idea. I have been AIP for closer to 7 months and highly recommend atleast paleo! Although sad to not be eating pizza and things i find it has helped quite a bit for me personally, i hope you will find it helpful and the book as well, Dr. K is very knowledgeable, he also has alot of youtube videos as well. Best of luck to you and your daughter!

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Hi Eric,

Wow you wrote an informative note! Thanks! I am sorry to hear your daughter is going through this. I know you said she had a virus. I don't have any answers other than saying for me once I got rid of the virus or whatever triggered the ITP and got my immune system balanced I am now fine.

My story. The ITP was triggered by a bad virus or parasites that I caught in March 2017 in Costa Rica. Once I got help from a homeopathic doctor to balance my immune system and rid my body of virus and parasites caught in Costa Rica, I have been stable since October 2017.

Before that, from May 2017 till Oct 2017 the virus/parasites triggered my immune system to attack my platelets every 2 weeks and bottom out to 1,000-7,000 count. This went on for 5 months of rollercoaster platelet counts of 1,000 to over a million(after Nplate) Every two weeks I was on IVIG and DEX bursts; it was a horrible cycle.

I am now at 230,000 platelet count for a while now and have had no IVIG or dex since 10/17. I was diagnosed with ITP 2 weeks after my return to Colorado from Costa Rica.I caught something there! My platelets went as low as 1,000-7,000 during those horrible 2 week cycles of IVIG/dex bursts.

In case it helps, I want to share what I am taking and doing:

Western Medicine: 25mg of Promacta three times a week.

Eastern Homopathics: Immunosupport-2 caps every day, Adrenal Support - 2 caps every day, skateliver oil (increases platelet production)- 2 caps every day,

and an antivirus homeopathic 1 dropper 2Xd, and immuno stabilizer homeopathic 1 dropper 2Xd.

The homeopathic doctor instructed me to quit gluten 100% in October which I did. And to have dairy only 2Xweek. He said goat cheese whenever is fine.

I also try really hard to keep my stress level down.

I am not saying I am fine and over ITP but I am cautiously optimistic that I can stay stable.

I must say the Western doctors thought I was crazy to pursue other options but I knew their bandaid method was lacking.

My hope is this is helpful for you.

Good Luck!

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Hi CDmom,

Thank you! I was just sharing what little I know about ITP. Your experience seems very similar to my daughters, and it seems like this is the most common way to get ITP, even though few facts are known about the mechanism. My daughter just seemed to have a routine cold, not even that bad a cold. She did have a sore throat, but no strep. Didn't feel bad enough to stay home from classes. The low platelets were found during a routine CBC. At first they thought it was an instrument error and had her come back a day later for a retest. The rest is history. Her treatment was similar to yours but no IVIG. I asked about TPO-RAs but they said that was way down the line treatment wise, as we don't even know if she has chronic ITP, and wont be sure for a year they tell us. My daughter HATED the dex, but her platelets reacted quickly to it, so that was good. I totally agree with you about doctors treating ITP symptomatically, but I don't know enough yet to try anything else. I've mentioned homeopathics to her doctors and gotten a bit of a laugh in response. Sort of like, you can try it if you want, just don't take anything crazy. Additionally, my daughter is 19, very bright (must be from my wife) and very much her own woman. She looks to us for advice, but at the end of the day, its her health, her decision. We are trying to learn as much as we can to help her make decisions, but we still have to trust the doctors, which we do. That's just a little side note. I'm so glad you have your Promacta dose titrated, I have read that can take some time. I would like to stick a toe or two into the eastern homeopathic waters, but have no idea where to start. No offense, but some of it sounds like such b******t, that I'm so reluctant to try much of it. Especially in light of the drs less than lukewarm opinion of it. You may be thinking, of course they aren't for it, they can get $5700.00 for a rituxan infusion, and I would agree. As you may have read in my reply to JennaShi, I'm very interested in the autoimmune paleo diets. They share your elimination of gluten and dairy. Is this part of how you rebalanced your immune system? I don't really know what that means, but it sounds positive. I would love to learn more about those various compounds you take, can I just google them or do you have a resource you could point me to? Please don't tell me you get them special order from Wild Bill's Snake Oil Emporium. I'm interested in shoring up the bandaid methods with some good homeopathics. I just need some help to know which ones to trust. I see many on Amazon? But are they legit, some have really good reviews. Please don't think I'm knocking homeopathics, I'm just a skeptic, and need helpful information. My mother has been a health food nut all her life, and I'm thankful to have been raised on healthy food, but I have had to debunk several of her QVC/HSN miracle cures from time to time. I guess that why I'm sorta dubious. Anyway, thank you very much for your reply, it was very helpful and informative. It helps to know others have the same condition, so we can share ideas and experiences. I wish you good health!

Eric

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Hi Eric,

I realized that I gave info from a couple of months ago when I cut and pasted to the ITP website. I am not on Promacta at all anymore since May 17, 2018. My platelets are now at 230,000ish. I believe that I got the bump up from the 190 because I went on 2 z packs for a real bad cold I got last month.

Here is the up to date note I wrote to my PDSA platelet disorder group yesterday afternnon. It gives more info on different homeopathics I was put on ober the past 9 months. The doctor used an Avitar machine to check my organs through accupressure points on my hands and feet- it gave an electromagnetic reading of my organs and systems onto a computer screen. From that info, ie. unbalanced immune system he chose the appropriate homeopathic for me.

The parasite cleanse was done through three Rife treatments and Pararid pills for a few weeks from the vitamin store. Rife is Ultrasound waves that break the membrane of the parasites and kill them.

I am just trying to help people like us! I spent sooooooo much time researching causes of ITP last year when I was diagnosed because I wanted to get rid of it and not treat it the rest of my life. I went to 3 infectious disease doctors. I was too well (other than 7,000 and under platelet counts!) for them to take me seriously and find the infection I knew I had.

I am just thankful that I had 2 different guardian angel friends that lead me to the Rife treatment and the homeopathic practioner. The Western doctors do not look at underlying causes and I want to help anyone who might benefit from looking at underlying causes.

Here is a section of a similar note I sent to the PDSA website group but with more detail and includes the info on the homeopathics I took at different times along the past 9 months

I have no idea if my ITP is cured but it has been stable now for several months since October. This is after being on an every 2 week cycle of IVIG and Dex bursts along with Promacta/NPlate from May 2017-October 2017. My last Promcata wa May 17, 2018. (Except for a month when I was on triple antibiotics in July) I am happy to report that I have not had IVIG or dex burst since October 2017. I share this information in case it is helpful to anyone looking at this website. However, it may not be medically right for many of you.

Eastern Homeopathics taken at different times over the past 9 months:

Immunosupport-2 caps every day,

Adrenal Support - 2 caps every day,

skateliver oil (increases platelet production)- 2 caps every day,

an antivirus Cats Claw homeopathic 1 dropper 2Xd, and

immuno stabilizer- Immunomod - A

Astragalis 1 dropper every day

Berberine capsule

The homeopathic doctor instructed me to quit gluten 100% in October which I did.

I am not saying I am fine and over ITP but I am cautiously optimistic that I am.

I must share that the Western doctors thought I was crazy to pursue other options. They said “you have ITP get used to it and you will have it forever.” But I knew their band-aid method was lacking and it was just too coincidental to occur right when I got back from Costa Rica. After seeing my good results my hematologist said he believes there is a place for homeopathy in ITP. By the way, I al;so went to Mayo Clinic they did not set me up with an infectious disease doctor so it was more of the same Western Medicine "you have ITP".

I am not a doctor and believe that this homeopathic route was right for me but may not be the correct path for many ITP cases. My hope is this information is helpful for people. Please let me know if you have any questions.

Good health and best to all.

Eric, I hope this helps! Let me know if you have any questions.

CDmom

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Hi JeannaShi,

It is crazy and scary! I did so much research when I first got diagnosed with 7,000 platelet count. Here is my cut and pasted story. Please let me know if you want additional detail. I would go to a good homeopathic doctor, a funtional medicine doctor because the hematologists just wanted to treat symptoms with IVIG, Promacta, NPlate and dexamethazone bursts. See if there is an underlying virus,bacteria etc. Then rebalance your immune symptoms that is what I did anyway.

I don't have any answers other than saying for me once I got rid of the virus or whatever triggered the ITP and got my immune system balanced I am now fine.

My story. The ITP was triggered by a bad virus or parasites that I caught in March 2017 in Costa Rica. Once I got help from a homeopathic doctor to balance my immune system and rid my body of virus and parasites caught in Costa Rica, I have been stable since October 2017.

Before that, from May 2017 till Oct 2017 the virus/parasites triggered my immune system to attack my platelets every 2 weeks and bottom out to 1,000-7,000 count. This went on for 5 months of rollercoaster platelet counts of 1,000 to over a million(after Nplate) Every two weeks I was on IVIG and DEX bursts; it was a horrible cycle.

I am now at 230,000 platelet count for a while now and have had no IVIG or dex since 10/17. I was diagnosed with ITP 2 weeks after my return to Colorado from Costa Rica.I caught something there! My platelets went as low as 1,000-7,000 during those horrible 2 week cycles of IVIG/dex bursts.

In case it helps, I want to share what I am taking and doing:

Western Medicine: 25mg of Promacta three times a week.

Eastern Homopathics: Immunosupport-2 caps every day, Adrenal Support - 2 caps every day, skateliver oil (increases platelet production)- 2 caps every day,

and an antivirus homeopathic 1 dropper 2Xd, and immuno stabilizer homeopathic 1 dropper 2Xd.

The homeopathic doctor instructed me to quit gluten 100% in October which I did. And to have dairy only 2Xweek. He said goat cheese whenever is fine.

I also try really hard to keep my stress level down.

I am not saying I am fine and over ITP but I am cautiously optimistic that I can stay stable.

I must say the Western doctors thought I was crazy to pursue other options but I knew their bandaid method was lacking.

My hope is this is helpful for you.

Best!

CD

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Hi CDmom, thank you for sharing! It sounds like you have been through alot! I agree that most western doctors or allopathic, do not agree with nautrual medicine. They are trained to treat symptoms with medicine (not natural medicine). I also see a natural doctor (functional med doc) who treats similarly and way more often my primary doesnt agree with his recommendations. Some of things you are talking about I can totally relate to, i too am working to heal the gut, it seems that a leaky gut increases chances for auto immune issues and suseptibility for viruses etc. i too take a adrenal complex and it seems too help but have not heard of skate liver. So glad your platelets are back up, that second time must’ve been scary! Do you feel much better? Has your gut been healed? I was taking alot of supplements from my func med doc 3x a day and although there were improvements my stomach has been hurting and nauseated so i think my liver was overloaded.. so ive had to cut down vitamins to 1x a day and avoid things like the echinacea and withania for those adaptogens have not agreed with me. Its seems to be quite a process but we are figuring it out slowly, and I guess as you deal with one thing other issues there were buried can come to the surface. Best of luck to you!

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