Would really welcome any thoughts!

So......I went to my GP in early April, just not feeling quite right. Routine blood tests showed a platelet count of 72.The test was repeated two weeks later. This time the count was up to 95. As this was still low I was asked to come back and have another blood test in two months time. Annoyingly this was back down to 74. It was recommended that I see a haematologist. In advance of this appointment seven different blood tests were requested.

I had my initial consultation with the haematologist yesterday. Unfortunately the blood test results were unavailable due to some mixup whereby they have been sent to my GP. I had a consultation with my GP this morning to discuss the results of the tests as they were with him. Everything came back normal except that my platelets count was 78.

I have another appointment with the haematologist in August and I have to say I found her very brusque and unhelpful.

Whether a lot of is via between being very scared and, when I read that lots of people have much lower counts than these and they are basically well.

I have been suffering quite a lot over the last 18 months with anxiety and have had a couple of bouts of cystitis and also have very dry eyes. I am a woman of 57. I tried to eat a pretty healthy diet I am gluten-free since March I don't eat processed food and try to drink a lot of water etc and I don't drink alcohol or smoke.

I guess the main reason I'm posting here is in the hopes that somebody will be able to comment on my low platelets and comment on anything else that might occur to them in relation to this and preferably I would love some reassurance !!!

thanks so much
I

From just an ITP standpoint, those counts would not require treatment but possibly infrequent monitoring.

You may have other health things going on and your doctor may want to rule out other possible problems with various tests. If nothing is found but the lower than average platelets, I doubt anything else would be needed.
Erica

Hello,
That is how I found out about mine. I went to 3 hemos till I found one I liked and took the time to ease my fears. Mine platelets are all over the place, and mine are also in your ranges. Right now it just watch and wait. You might notice patiche and bruising. Maybe some gum and nose bleeds and lots of fatigue. Your platelets might never drop to a life threatening level or need for medication. But if you have an iPhone or a smartphone, there is a free platelet tracker app. It's called ITP tracker and has s section to also keep track of exercise level, symptoms, ect. Right now learn all you can and keep track of any meds, fatigue, pain and stress levels. And always keep track of your platelets. It's a hard diagnosis to deal with and accept, but in time it becomes manageable. Hang in there and if you any questions this is a great place!

Jo:

I agree completely with Erica. Way too often, people will look at ITP as the cause of many other symptoms and the problem is that they miss other things that might be going on. Since all of your tests came back normal, it's possible that they just didn't test you for the things that might be happening. They probably just did some general testing and more specific things need to be added. You may not like your Hemo, but she is doing exactly what she should be doing at this point.

Dry eyes are common and can be a symptom of many things. Sjogren's is one, but there can be other causes. You may want to see an eye doctor about that. They can do a Schirmer's test and eye drops can be prescribed. Dry eyes can also be due to menopause, in fact, most of your symptoms could be related to that. I don't know how far you are into that process, but I'm in my fourth year (at 51) and have a lot going on with my body because of it.

Vitamin deficiencies can also cause some of those symptoms, so that would be the first thing to look into and the easiest to fix. Many times too, people will get symptoms of an autoimmune disorder long before anything shows up in labs, so it can be frustrating not being able to find a cause. At least with ITP, you can be diagnosed quickly and know what is going on right away with CBC's. I know how hard it is when your body turns on you and sadly, sometimes there isn't a way to fix it.

Really helpful Sandi, thanks. They tested for a range of things, and are now going to test for Hep B and C and HIV. I agree that most of the symptoms could be menopausal. How would you know if it were a vitamin deficiency? B12 was tested for and was normal. I have been eating a shed load of kale to boost my vitamin K.

I probably spend far too much time googling low platelets and this is probably adding to my anxiety. I know people say not to get hung up on the numbers, but I am at the moment!

I can be very anxious at times and my advice would be to stop googling low platelets Anxiety in itself can make you feel awful. Your platelets are great, any thing over 30k is fine. It might be helpful to you to see a different hematologist who could reassure you better than the one you saw.

It sounds like you are doing everything you can as far as eating healthy and taking care of yourself. A visit to the eye doctor could be helpful for the dry eyes.

Thanks Dru. Ironically I was just surfing around a few minutes ago again- note to self I really must stop! I asked my GP today if I could just leave it for six months and see if the platelets have naturally increased. He replied that six months is a very long time in bloodwork terms, which sort of scared me a bit. From everything that I've read in my googling and everything that I've read on here it seems that platelet counts can vary wildly almost day to day, could you say that was true, anyone?

Platelet counts can vary quite a bit. I have gone from 375k to 17 k in 3 days. Another time 368k to 198k in a week. Also have gone up very quickly when treated with prednisone. Yours seem pretty stable. With your counts most hematologists would see you every 6 months or so. A GP might not be comfortable with that. Since you are anxious about it then it might help you to have them checked more often.

My last count was 83 and I'm not going to get tested again for 6 months. Not unless I get signs that my count has bottomed out, like blood blisters in the mouth, then I'd go for a test. Last year I had a count of 8 at one time so it's not because I've always had a high count.

Where are you in the UK? I'm in London. There is a list of specialist ITP doctors online. If there's one close to you, you can ask to be referred.

itpsupport.org.uk/itpforum/centres.htm

Jo:

Don't let your GP scare you. First of all, GP's are not nearly as familiar with ITP as most Hemo's are, so they can say things that aren't quite correct. For one thing, you have not been doing this for very long, so the ability to see your current counts as stable does not have a long track record. Some people have had mild ITP (such as yours so far) for many years and at that point, feel more comfortable with a count once or twice a year. They don't give it much thought. If things keep going this way for you, you will probably get to that point. But at the beginning, most patients are afraid and prefer closer monitoring.

Second, you are right. Counts can vary from day to day and can be influenced by many things. A slight cold can bring them down, or stress, or an herbal supplement. When someone has a normal count of say 255 and six months later they get tested again and are 225, it's no big deal. They lost 30k in that sample. But when someone is 78 and they lose 30k, it's more concerning. Don't get hooked on the numbers. Stay focused on the fact that you are above a safe level.

The only way to know about low Vitamin levels is to have them tested. I frequently have low levels of many things, mostly because some people with autoimmune disorders do not absorb Vitamins from food the way they should. I've always believed that and my Rheumatologist just said it to me the other day. I can't keep the levels up unless I stay on high dose scripts. OTC's from the store don't do it for me, nor does food. Research has also shown that even if a person tests in a 'normal' range, they can still have symptoms if it's low normal. I always get copies of labs so I can see for myself.

I know you are upset, but if your counts drop low, chances are you will know it. People tend to get blood blisters in the mouth, large, black spontaneous bruises, or nosebleeds that do not stop after 5 or 10 minutes. If that happens, you get a count done. There is usually time for that - it's not like the count drops and you suddenly bleed out. If you need treatment, you take a breath and do what you have to do. Most people find that in time, ITP is not as earth-shattering as it first appears to be. You'll be fine!

Once again thanks everyone! I am feeling more comfortable with your reassurances. It is so great to hear from people who know so much about this. I live in East London and am currently referred to Queens Romford. So could I ask to be referred to say The London instead? I emailed my results to the haematologist to try to avoid another raft of tests. I do not doubt her medical credentials, her people skills/ empathy were somewhat lacking. I was also left reeling to receive a letter marked Oncology Dept when my GP just implied that it was routine ( which I know it still is).

As you can tell, I am a sensitive soul who is finding my way through very alien territory!

Once again, thank you all for your time in your replies, it means a lot.

Hi I was diagnosed in 2012.

My count was 30,000 it rebounded and has hovered at your levels I have been no higher than 125,000. Usually between 70,000 - 90,000.

I was on 3 month checks and I went whenever I started bruising. Otherwise lived fairly normally.

My counts only recently, 2 years after my diagnosis, have dropped to 7,000 and I am now on prednisone. So if yours are anything like mine, they will go all over the place, but if your doctors are like mine, only get concerned less than 30,000.

jomurphy wrote: I was also left reeling to receive a letter marked Oncology Dept when my GP just implied that it was routine ( which I know it still is).

We all see Oncologists, but only because most Oncologists are also Hematologists. For some reason, the two specialties have always been combined.

Sandi,

I think they have always been combined. However I am finding a few doctors now that are strictly hematologists. There is a group of three of them here. My doc is now focusing on hematology. I guess there are enough blood disorders to focus on.

Hi Jo,
Same age as you, live at opposite side of world! However I hear you. Take heart here & learn to manage yourself with support from other ITPers, your health care providers, family & friends.
I found my hematologist in our main city public hospital through the hematology organization. I really don't like going there which is on the same floor as oncology, however he is very nice & for the first time in 10 years I feel like I connect with a specialist.
I agree - keep pursuing answers, but at the same time try not to 'worry' too much. That is detrimental to healing. I am growing kale & enjoy it, however we are going away for a few weeks & others will benefit.
Best wishes,
mj

Thanks sincerely, MJ! Have just opened this site first thing and have read your supportive post. I agree that worry and stress do not support healing; it's putting it into practise that's the tricky bit! I suppose like many people I have always taken my good health for granted, and even though I went to the doctor off my own bat, I wasn't really anticipating anything being wrong! We can be very perverse, us humans! I was drinking raw kale blended every morning until recently, perhaps I might continue? I now understand it is much more of a long-term situation with lots of people, and so the quick fix back to 150000 that I naively thought could happen quickly, may take time, or may not happen at all, but as long as the platelets don't drop too low, and one is stable, then it's all good.

Hi Jo,
Ten years ago when first diagnosed I was exhausted, for many reasons. Mainly trying to be everything to everybody! The hardest thing I found was to say 'no'. On the other hand we are told that we 'deserve me time', which was foreign. However, I have learned to balance life more & come to realize that if I'm looking after myself I can then care for others. Life is a real roller coaster here - farming, family including grandies & small rural community involvement. I determined early on not to let ITP take over my life, but that I needed to make some changes. Still working on that including mental, physical & spiritual areas. My platelets like to hover around 30 & I am very fortunate not to have had major treatment events. Hang in there & stay in touch.
mj

Jo, you could ask your GP to refer you to the Royal London. Dr Drew Provan there is the UK's ITP expert. He is very easy to talk to, doesn't panic and will answer any questions you have.

Here he is. He may even be the leading world's expert.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Thanks Meredith Jane. It sounds like you are getting things into perspective. Are you aware of EFT? Thought I would use a bit of this too! Can't do any harm! Where are you, is it Tasmania?

Great idea! On the case

Haven't heard of EFT - have read a lot of books especially on cancer healing which suggest a whole range of treatments, some of which I wouldn't do.
I live in the state of South Australia, on Yorke Peninsula.
mj