1st year anniversary: Am I recovering or was it a wrong diagnosis?

[GabyJulian]

Hi everyone,

I have long hesitated before writing this post because upon reading your stories I wasn't sure if mine had anything useful for you. Frankly, I haven't felt the devastation of ITP that many of you have to deal with because it never got beyond the mild stage of 46k. However, one year since the diagnosis I am up to 192k WITHOUT ANY MEDICATIONS. However, I am following a DRACONIAN DIET which may or may not have helped my recovery. So my post is about my diet and asks whether any of you experienced a spontaneous recovery or had a misdiagnosis, hoping that there may be something of value in it, or perhaps not: you decide.

As a 44 year old male, on the day of my diagnosis in Dec 2012 my platelet level was pretty good: 78k. It then kept dropping over the following weeks until I reached 46k, but then it stabilised in the low 50s and stayed that way until I checked my platelets again in September 2013 (yes, I explain below that b/w April and September I didn't do a blood test due to sheer immaturity). My physicians' approach was the conventional first line of therapy: steroids and let's take a wait and see approach. I didn't want to take steroids, so I went instead for an alternative of removing all major known allergens that I was aware of in my diet: gluten, dairy and seafood. For good measure, I also eliminated all refined sugars.

The immediate results, as in the initial two weeks, were phenomenal. I felt a lot more stamina, no more headaches, and just so much better physically and mentally. Okay, but that has nothing to do with ITP, and to be sure my platelet count didn't budge: 46k in April 2013.

Yet I felt so much better that I kept on the diet and then, to my wife's frustration, decided to deal with my ITP by doing a "ostrich buries its head in the sand'. No more blood tests, and basically ignore the illness trying to carry on with my life as best as I could. I would occasionally bang myself on furniture and once cut myself with a kitchen knife. After a few minutes of panic we started to realise that I must have been improving because my blood was clotting just fine.

Over the past summer I increased my exposure to risk and took up surfing again in Bali where I live. I don't mean just any surfing, but waves on sharp, tropical reef. Finally, my wife's advice had the better of me and in September I went for a blood test. To the physician's astonishment, it was up to 148k. I had it rechecked on 23 October, and it went up some more to 192k.

Was I a misdiagnosis? Well the jury is out on this one but there's no evidence that I could have caught another illness. I had 3 different hospitals in 2 different continents run the tests, and they all eliminated any other possible cause. I am 45 years old, so at this stage of our lives it is pretty much a chronic illness. We are not known to recover from ITP like a child would. I understand my chances were 5% to do a full recovery. Yes, ITP is predictable in its unpredictability, and can strike again when we think we're on the way to recovery. The point though is that my platelet count keeps increasing.

Am I just very very lucky? Did my diet help my recovery as my nutritionist will vigorously argue? Does anyone in our community know of any illness that could mimic ITP for over 6 months? Anyone with a story of spontaneous recovery after a year?

Thank you for sharing.

[mags4743]

Thank you soooo much for writing this. It could be me! I have often wondered if, in fact, I have ITP because I don't bleed or bruise like others on this site seem to . I am, in fact a Type 1 diabetic and prick my finger 3 times daily , inject 4 times daily and, of course, when I prick my finger it produces blood (as it should) but then it stops. I don't have petaechia either. My platelets at their worst have been 6 but are now around mid 30's. When diagnosed I was given prednisolone, then cyclosporine and mycophenalate - all of which made me feel dreadful and didn't work. I have not had any meds. for over 12 months now.

Where I find your post incredibly interesting is that I have thought for a while that I may be allergic to the bread I eat.. I don't have the typical systems of coeliac but after I have eaten bread, I really don't feel very well so I have stopped eating it and.... time will tell.

You talk about other possible causes being eliminated by different doctors. I think these "different causes" will be the standard ones that all haematologists carry out i.e. leukemia, cancers etc. BUT there are other causes of low platelets and I received an email from PDSA (the American platelet website) saying just that. I have this website somewhere and later I will find it and post it on this site AND YES THERE ARE ILLNESS WHICH CAUSE LOW PLATELETS.

You could have been misdiagnosed OR it could be the change in your diet - whatever-I wish you well and Happy Surfing.

Again thank you so much for posting your experience on this site. Personally I think posts like yours are so important for all of us. Sometimes doctors just don't have the time but I strongly believe that we ITP'ers (or not!!) can help each other. Thanks again

[GabyJulian in reply to mags4743]

Hi Mags4743, Please accept my MOST SINCERE APOLOGIES for taking so long in replying to your mail. The day after I wrote my message I left for work to Burma (Myanmar) which is still one of the most remote places on earth when it comes to connectivity. I had been told it would not be easy, but I didn't expect it to be this bad!! Accessing the net was just impossible. Now I'm back in the capital city so I'm finally able to get back on email.

Thank you so much for directing me to the PDSA site. It was very informative and I will definitely bring it to the attention of my physicians.

Your experience with bread sounds just like mine! Actually it is a problem that you and I do not have full-blown symptoms as if suffering from celiac disease, because then I would have been able to eliminate it from my diet a long time ago. Me too, I didnt' feel very well after eating bread but I couldn't really say that I was feeling sick either. Anyway, I can say in good conscience that eliminating wheat from my diet has been probably the best thing ever - I just feel so much better. Of course I would not dare make any recommendations to you - each body reacts differently - but if I may say so, give it time. In my experience, although the results were very fast, the real improvement has come after 2 months. I hope you let me know how it goes!

Wishing you all the very best

[mags4743 in reply to GabyJulian]

Thank you for your reply. I have been without bread now for almost two weeks and do feel a little better BUT it is surprising how much wheat is in other foods that one doesn't realise. In my efforts to avoid a sandwich at lunchtime I sometimes go for soup - yesterday I looked at the label and yes - you've guessed it "contains wheat flour". I have made an appointment at my GP's

on Monday hopefully to get tested but I have read somewhere that you have to re-introduce wheat into your diet again (for about six weeks) before they can do the test???? Hope someone knows if this is the case.

It is important to me as we are going away for Christmas to Spain and, like in all foreign countries, the bread is so good!

Of course I will keep you posted.

[GabyJulian in reply to mags4743]

Hi, I had no idea that you had to reintroduce wheat in your diet in order to do the test. What does your GP say about the accuracy of the test? Would be very grateful if you could let me know about the test, as in the trade name. Not for me because I don't need it anymore since I'm done with wheat, but for my youngest son. Our GP conducted an allergy test (actually the sample is sent to the US and then mailed back to Bali) and it was quite disconcerting because the results show that he's allergic to literally dozens of food groups, and apparently that's the case for most people who take the test. So really it's impossible to differentiate between the more serious allergies and the milder ones. Okay, at this point I should probably apologise for having inadvertently drifted us away from a conversation about ITP! Keep well.

[mags4743 in reply to GabyJulian]

I will know more after Monday when I have visited the doc. As far as I know it is just a blood test but will be in touch next week. Thank you. Don't worry about drifting. Would be marvellous if the cure for ITP was not to eat wheat!!!!

[mags4743]

pdsa.org/resources/other-pl...

This is the website referred to above. Hope you can access it.

[GabyJulian in reply to mags4743]

Very informative. Thanks!

[ITP_1992]

Hi there, thank you for your post. I often read everyone's post about their ITP experience and often feel lucky that I'm not on medication for the rest of my life. I've had ITP for 21years now, started when I was 5. I was hospitalised at the time but didn't take any medication, and as the weeks went by my platelet count went up and then I was discharged. We all thought that it must have been an acute ITP because it has disappeared on its own. However, it did come back after 5 years and I was hospitalised. Again, the same thing happened and ITP disappeared for over 4 years. I was hospitalised and again no treatment, and over the next weeks my platelet count went up. Since then (I was 14), my ITP disappeared for about 10 years until I was hospitalised a year after having my son (Dec 2010) This time I had treatment, platelet transfusion and steroids. Once I was discharged, I remained on Predisolone but after a few month I got fed up with it so asked my consultant for another drug and was given Azathioprin. After another few months my platelets were of a good count (around 196K) so my doctor said that I no longer need to come for check ups, I can just see my GP once a year. However, in September 2011, my platelet count was 3 so I was hospitalised again. Once discharged, I continued with steroids as I was not given any other options and after a couple of months of feeling like death...I asked my consultant to come off them. My consultant said that my platelet count went up so I can just come for a blood test every 3 months to make sure everything was fine. I have since been fine, I do not follow any special diets but I do eat healthy normally. No one has explained why for the past 21 years, ITP disappeared and re-appeared when I least expect it too. However, I am very grateful that I can still live a normal life (be cautious of course) and NO treatments. So I wanted to share my story just to show that ITP comes and goes as it pleases

[GabyJulian in reply to ITP_1992]

Hi Immy,

Very sorry to have taken so long to reply to your message. I trust you read my explanation sent to MAGS4743.

Your story struck a chord because I was recently told by a hematologist with extensive experience treating ITP that if I believe I'm on the way to recovery, then I should think again...

That possibility of a recurrence obviously worries me plenty, and your experience appears to confirm that ITP is reminiscent to the end of a bad Hollywood movie where the villain shows its ugly head again after the credits! What's most puzzling about your ITP is how RANDOMLY it comes and goes. I'm very glad that it has mostly gone and hope that it will stay that way!

I take note of your comment regarding your diet, and I am sure that one can be fine without eliminating gluten, dairy etc... In fact, my wife and kids eat a totally normal diet and are doing just fine.

Hence, I am very hesitant to come across as a 'militant nutritionist' who imputes all kinds of miracle results to dietary changes. I am definitely a skeptic, which is why I have come forward because my elimination of wheat and dairies (and refined sugars) was a decision of last resort and the feeling that I had nothing to lose anyway when fighting against ITP. So it has been a huge surprise for me to experience the AMAZING improvement in my overall well-being. What make it even more intriguing, as I agreed with MAGS is that eating bread did not make me feel ill, it just "didn't make me feel very well," as MAGS put it. So it would have never crossed my mind that I could get such positive changes and I do believe there must be more of us out there who can benefit from it.

We know so little about ITP, and who knows if one day we will find out that the immune reactions wrecking havoc in our bodies also affect the way we handle certain types of food. Or maybe not, but one thing's for sure, my energy levels since contracting ITP went down a lot for several months. Perhaps it was a coincidence, but I have no doubt that my dietary changes have brought me much needed stamina at a time when I was really feeling that my youthful days had come to an end

[GabyJulian in reply to ITP_1992]

Hi Immy,

Very sorry to have taken so long to reply to your message. I trust you read my explanation sent to MAGS4743.

Your story struck a chord because I was recently told by a hematologist with extensive experience treating ITP that if I believe I'm on the way to recovery, then I should think again...

That possibility of a recurrence obviously worries me plenty, and your experience appears to confirm that ITP is reminiscent to the end of a bad Hollywood movie where the villain shows its ugly head again after the credits! What's most puzzling about your ITP is how RANDOMLY it comes and goes. I'm very glad that it has mostly gone and hope that it will stay that way!

I take note of your comment regarding your diet, and I am sure that one can be fine without eliminating gluten, dairy etc... In fact, my wife and kids eat a totally normal diet and are doing just fine.

Hence, I am very hesitant to come across as a 'militant nutritionist' who imputes all kinds of miracle results to dietary changes. I am definitely a skeptic, which is why I have come forward because my elimination of wheat and dairies (and refined sugars) was a decision of last resort and the feeling that I had nothing to lose anyway when fighting against ITP. So it has been a huge surprise for me to experience the AMAZING improvement in my overall well-being. What make it even more intriguing, as I agreed with MAGS is that eating bread did not make me feel ill, it just "didn't make me feel very well," as MAGS put it. So it would have never crossed my mind that I could get such positive changes and I do believe there must be more of us out there who can benefit from it.

We know so little about ITP, and who knows if one day we will find out that the immune reactions wrecking havoc in our bodies also affect the way we handle certain types of food. Or maybe not, but one thing's for sure, my energy levels since contracting ITP went down a lot for several months. Perhaps it was a coincidence, but I have no doubt that my dietary changes have brought me much needed stamina at a time when I was really feeling that my youthful days had come to an end