My ITP story at 14 years old. And it is now back at 21?

I got diagnosed with ITP after a flight to Gran Canaria in which I woke up after 4 hours with a completely swollen face, lips huge and eyes like peas. I went to the doctors in which they felt my spleen and sped me off to the hospital on a stretcher in the ambulance unnecessary I thought). Nobody could speak any English. I got admitted and without any notice had multiple platelet transfusions over the course of 3 days. I was well enough to leave after 5 days but had no idea at the time what was wrong with me. I had a dismissal letter that was in Spanish.

We paid to get it translated and gave it to a doctor in the UK, they prescribed steroids as my platelet count was 9,000 even AFTER the transfusions. I was then referred to a Sheffield children's specialist (not sure if I classed as a proper child at 14 but I was glad to be treat like one sometimes, was more than can be said to my treatment abroad). Side note: I had not had an injection since being a baby and I was TERRIFIED. Within a week I'd gone from 0 to three Canada and a handful of blood tests.

After what seemed like a lifetime, I was given two options. An experimental drug also given to leukaemia patients. Now I can't remember the name of this but I really want to?! I have a feeling it had gloving in, and it was taken as a transfusion over 6-8 hours in one day, for about about 4 or 5 weeks. I was told there was currently a 16% chance of this working, but my other option would be to have my soleen removed. I must add that by this time I'm 16 and doing my AS Levels at college.

After weeks or no chance, my platelets started to go up, they finally settled on 135,000 when I was deemed healthy and given 3 monthly check ups for the next year. Everything seemed fine

This brings us to now, through the first 2 years at uni I often had scares when I thought some symptoms were related to my platelets for example fatigue and being generally run down, but hey I was living alone at uni, super stressed and probably not looking after myself the best. Any bloods that were taken came back fine for my platelets.

Actually, going back to my symptoms before I found out, although I thought I didn't have any, looking back at it now it was blindingly obvious there was a problem. For around 6 months previous to my holiday I had struggled so hard to stay awake, I would fully sleep in class throughout the whole lesson, every lesson, is often fall asleep when I got home from school in my blazer and shoes still! At the dinner table, anywhere and everywhere I would sleep. I can even remember at the airport before the flight I was asleep on the floor waiting in the queue to board the plane.

Back to the present and having this in mind, I have been made hyper aware of any symptoms of this.

So currently I'm going through my 4th and final year at university. I'm naturally a ve y motivated person but have struggled a lot this year to get the energy to really put my all into my studies. Exhaustion and anxiety have caused me a lot of hassle but I never thought they were related to ITP

I have put on around 26 pounds in about 8 months, going from a comfortable size 12 to a 16, I am constantly tired, my bones and joints ache, I have a cyst on my Coccyx, generally I'm not well

And I've also been suffering from uncontrollable itchiness to my skin, mainly on my bum cheeks and back of my thighs but also on my arms, these have caused me to get majorly large, deep and painful scabs all over my body.

As well as this, sometimes but not always I will come out in an aggressive hives rash all over my body. My skin is looking as bad as it did when I was 14, with scabs that are not healing all over my face, and to top it off I have a swollen neck under my chin, what I think is my thyroid gland.

I think my ITP may be back, or I suspect something is definitely wrong. I am at a new doctor in my uni city now and they are very happy to pin every illness down to UNI STRESS. I've not even been able to get my bloods done because of their lack of concern. The guy didn't even know what ITP was. Because my diagnosis was first abroad, I don't think they have my records of how bad my ITP was (turning to chronic) with my platelets being as low as 3,000 at some point. And I feel like I have to take matters into my own hands with this one.

Anyone had any experience with hives? Thyroid problems? Or anything similar to my story that anyone could share light on

Sorry that this has been so long! Have never had to go through my situation before properly

6 Replies

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  • Oh dear so sorry for all my autocorrect errors there! It's very late at night I'm not really with it. Not sure if you can edit posts?

  • Dear Chesirecharlotte,

    I am horrified at the lack of concern your physicians have shown. I'm not a doctor, but it sounds as if you have multiple issues that need to be diagnosed and resolved. Is there a medical school attached to your university that might have professors who could give you some guidance or referrals to competent practitioners? Do you have family who can give you a hand finding a decent health care provider?

    I also have had doctors dismiss my problems as stress or anxiety. They can be intimidating. Is there anyone who can go to appointments with you and be your advocate? Sometimes bringing along a friend/ family member makes a tremendous difference. Not only is it sometimes easier for these supporters to argue our case for us, they provide validation that you are not merely "uni-stressed", AND they serve as witnesses for the doctors' behaviour.

    Please keep us up to date about your situation.

    Ruth

  • Charlotte, you may wish to get a referral to an ITP Specialist Centre. You can do this by getting your GP to refer you and you just tell the GP which ITP Specialist Centre you wish to be referred to. The full list of all the ITP Specialist Centres is at the following link.....https://itpsupport.org.uk/public/itpforum/centres.htm

    Whatever else.....It does sound like it would be a good idea to get a full blood test to see what really is going on.

  • Thanks guys, I finally had blood tests, they took many tubes so think they're testing for a lot of issues! I will find out my results on Tuesday so I'll let you know

    In regards to health care, I live in England so it's the NHS or nothing really! If it turns out my ITP is back I'll definitely try to push to see a specialist again

    I write this as I have 2 days of my final year at university left, far too much work to do in such little time but I am starting with what I can only imagine is another of my regular migraines. A night of pain and sickness is incoming then!

  • I have celiac disease, hashimotos thyreoiditis and itp. My doctor tells me there is a link between all these conditions. I struggel whit fatuige, weight gain, pain og skin problems. I eat glutenfree and milkfree and take thyreoid erfa and levaxin for my hashimotos.

    You have to see a specialist in autoimunity.

  • I had a similar experience but quite later in life. My first episode of ITP happened in my early 60s. I was treated with prednisone and I was ok for another 6 years. I had my next episode at the ate of 69. I was again treated with steroid but that time it was dex and it became chronic so I went through treatments of rituxan.

    I am not a doctor but I am an engineer and I analyze things intensely. They say it is an autoimmune disease and so the treatment approach is to weaken your immune system. Does that make any sense? Although this provides temporary relief the next step is to surgically remove the spleen. The spleen is a critical component of the immune system. I don't think removal of a vital component is a productive approach and it only makes a cure more impossible.

    What I am doing now is watching a lot of youtube videos from mostly chiropractors who seem to have a better handle on how the body works. I think these holistic chiropractors are analogous to SYSTEM Engineers contrasted with COMPONENT Engineers. The idea these kind of practioners have the same kind of understanding as doctors practicing system approach "Holistic Chiropractors" versus the medical "Specialist Doctors". I am learning that autoimmune disease results from leaky gut and living in a very poor environment causing inflamation in our bodies. There are natural cures for that including the right diet, plenty exercise and doing what can be done to improve our nervous systems.

    I have switched to a keto diet, hove lost 40 pounds, my diabetes is disappearing and I have been able to put off my last Rituxan treatment since last month. I don't know if this is why I have gotten better but it has given me hope. I really do wish for you the best experience and that you completely heal from this condition. Miracles do happen. Have faith, meditate and trust in the lord.

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