Confusion/Dismay/Fear/Anger - Am I justified?

[Splodge60]

On 17th October 2017 I started bleeding heavily from my mouth, every day upon awakening and it still continues today, 6th May 2021. Historically I have a history of several DVTs, all in same leg, plus 1 PE, going back to 1993. I was ‘put on’ Warfarin for life and still have to be tested regularly as my INR has never been stable. My INR recently went up to 4.9 (with range of 2-3). I couldn’t have my second COVID jab because of this. I am 71 years old and female

Meanwhile, from 2002/3 I developed NASH, (the serious form of Fatty Liver), plus Type 2 Diabetes, plus Metabolic Syndrome, plus Diabetic Neuropathy and Retinopathy, plus Aortic Stenosis in Heart, and a myriad of other diagnosed health issues which have destroyed my QoL so much, I am now receiving support from Mental Health Services.

To now get to the nitty gritty point of this - last week a letter came in the post from my Diabetic Consultant with written results of recent blood tests. The most significant comment was a bit of a by-line or passing remark that I also had another diagnosis which she referred to as CHRONIC THROMBOCYTOPENIA!!!!

This has never been discussed with me by her or anyone else, so it was something of a shock, to which I’ve been trying to get my head around.

I thought that discovering I had Cirrhosis of the

Liver via the Patient Access Portal - was bad enough - and then having to wait 3 months to be able to discuss it with anyone from the medical profession - was equally as distressing However, this new diagnosis is more troubling because I know nothing about it. The paucity of information about it online, doesn’t help either I don’t even know if you are the right group to cover this.

There are a few abnormal blood results (from 8/4/21) and some are quite worrying ie Low Platelets = 103, low WBC = 3.84, Neutrophils = 2.15, eGFR >60, High ALP = 219, High GGTs = 652, High HbA1c = 73 (Sept 20= 57), Low Hb = 120 g/L and RBCs of 3.8.

To be honest, I don’t know what most of these mean as well so I am suffering a wealth of frustration and it will be 10th June before I can get them explained. Additionally, I discovered today I had lost about 10 stone in weight during the past nearly 4 years.

I now have a difficult rapport with any medic and never ever want to see another one. I did see a Haematologist for the heavy blood loss but was told it was stable so there is no need to worry!!!!! A Consultant sent me home from hospital once, carrying a sick bowl full of blood. Even the nurses were shocked at that!!!!! I cannot stop crying and struggle to keep going on. I realise that others suffer a lot worse than myself but it is nevertheless, quite a difficult situation.

[Morgan]

I can only answer from the ITP aspect that your result of 103 platelets is quite good as the majority of us function perfectly well with a count of 30 and over with no need of medication. Normal platelets are 140 and over. But the bleeding from the mouth is quite worrying and may be accounted for by your other medical conditions or medication . By the way it is called Chronic Thrombocytopenia as it is permanent (not because it is something terrible) it is called Acute when it is temporary. For more info please see below link

itpsupport.org.uk/index.php...

[NickyD]

Hi My lowest platelet count was zero and i am still here. Hang on in there it can be a rocky road. Nicky x

[ItsRalphy]

Hi Splodge

Yes, your feelings are justified! Sounds like you’ve been through a lot. But when it comes to Itp... levels over 100 are pretty good! Compared to some here you’re in a great place on the scale so it’s probably not a huge worry. It’s a shame you’ve been thrown another curve ball without any explanation- that seems to be the biggest problem here.

Morgan is right, Chronic Thrombocytopenia just means it’s persistent, not dire so don’t be scared off by that.

I also agree with Morgan that the mouth bleeding may be a worry but Itp on it’s own doesn’t usually cause bleeding until much lower levels so sounds like other treatments or conditions may be exasperating the issue, but of course that’s not a medical based opinion as I’m no doctor.

I had a tooth extraction once that bled for an hour or so, but that’s a pretty deep wound. Other than that I’ve had platelet levels around 40/50 for 14 years and the worst I’ve had is some pretty funky bruising... so on 100 you should be doing ok!

It sounds like you’ve been through a lot recently, and I do understand the frustration! But try not to worry too much about this. June’s not too far off and far as Itp goes, you’re not in a bad spot.

Be strong! With all youve put up with, it sounds like you are already a very resilient person!

I really do wish you all the best!

x

[Paint3r13]

I wish I could hold your hand and give you a hug! Sometimes this world of doctors and medical maze of the unknown can be quite daunting! Finding the right doctor or right way to proceed is so hard! For me it, ITP happened seemingly out of the blue when I thought getting a flu shot and a pneumonia shot was the right thing to do??? Then four days later and a trip to emergency, caused my world to crash and I thought I had lost control of my own life! After a very sweet doctor helped me get through this first real crisis that has gone on for seven months! I soon realized I had to try and take control of my own health and to the best of my ability whatever that may be! Doctors can be a God sent, but I wasn’t sure their way was the only way! I soon realized I had ignored many of the same issues you have! So I slowly started to combat each issue and eat more healthy, next read, read, read everything I could get my hands on from Doctor journals and natural alternatives also. Some things I read gave me hope! Then even that could overwhelm me! Sometimes it made me so nervous, because it seemed so huge and impossible. I must say I had to back up and calm down. Stress is a major contributor to so many diseases and especially autoimmune ones. Mine was years of eating the wrong things! I couldn’t beat myself up or feel guilty. I had to move forward and make changes in things I had control over! You can too!!! Be brave and remember that even the best of warriors have bad days! Fear, self-pity, and discouragement can paralyze us which is the worse thing we can do! Backup and breath clear your head, stress will do you in! Everyday is a blessing and life is worth fighting for! Love this site it has given me so much information and hope! Some have had some good responses with new medications or even the more natural methods! I know I can’t give up, to many people love me and care about me! I hope you can find the best solution for you! My fight is going in a positive direction for now, lol, and not sure about tomorrow, but please find that part in you to fight, but remember love, kindness, forgiveness and joy can build you and your body up and your platelets 🤗and discover who are even more! You are important and I do feel your pain!