I’m scared

[beetamer]

F 21. Hi everyone, I’m looking for some opinions on what im going through at the moment.

I have been having consistent high platelets and a constant note of “mild thrombocytosis”, this has been going on for 2 years now. I have had a history with my iron and my GP has assumed it was reactive, but I have solved the issue and the platelets remain the same. They are consistently over 450, highest it’s been is 512. I also have issues with my stomach…. IBS specifically, so im wondering if this is what could be causing this.

I also have some of the symptoms such as fatigue, joint pain, burning pains in feet/hands, and bruising. Weirdly I also developed onset livedo reticularis.

Anyway, my GP has mentioned if this continues I need to be referred to a specialist. But im just looking for some reassurance haha

[hunter5582]

The thrombocytosis could be reactive. Anything that causes inflammation (e.g., IBS) can cause platelets to increase. The other symptoms you report are consistent with a MPN, but could be the result of something else. Given your concerns, suggest not waiting to get a proper diagnosis. Ideally, this would be done by a hematologist, preferably a MPN Specialist. Alternatively, your GP could order a myeloid panel that would test for JAK2, CALR, and MPL mutations.

We all understand the worry when you do not know what is going on. Please know that if you do test positive for ET or another MPN that these conditions can be managed successfully. I was diagnosed over 30 years ago with ET that progressed to PV 10 years ago. I have lived a good life managing the MPN and continue to do so at age 68.

Here is a list of MPN Specialists should you need to reference it. mpnforum.com/list-hem./

All the best.

[PhysAssist in reply to hunter5582]

Hi BeeTamer,

I totally agree with what Hunter has said- as I do all to often.

Get evaluated by a Hematology/Oncology specialist, preferably one on the list Hunter posted, and one way or the other, you''ll accomplish two goals:

1) You will get peace of mind.

2) You will know what treatment, if any is the best way for you to move forward from this moment.

That said, it's appropriate to be scared/concerned/worried, but what you cannot do is let it make you procrastinate or be paralyzed from taking proactive steps for your current [and future] health.

Remember to breathe:

nhs.uk/mental-health/self-h...

healthline.com/health/breat...

forbes.com/health/mind/brea...

Best regards, and please leyt us know what happeneds from here on.

PA

[mhos61]

Has your GP ran any tests to rule out autoimmune disease? He/she should be at the very least suspicious. A ‘reactive’ increase in platelets could be related to an underlying autoimmune disease.

I would definitely persist to be referred to either a rheumatologist or haemotologist if these symptoms continue - something is going on!

I have ET and my platelets were only 500 on a random blood test. My GP was smart, ran a second blood test three months later, platelets still 500. At that point he referred me to a haemotologist. I was diagnosed with ET Jak2+.

[Amethist]

I hope your gp has also checked vit levels, B12, folate, vit D as well?

If / when yes, always get a print out of your results. With B12 in particular, if it’s less than half way through range, it would probably be a good idea to try a supplement such as a high dose sublingual methylcobalamin. I would suggest sublingual as if you have gut issues, this can adversely affect absorption of these vital nutrients.

Until 2008, the upper limit for platelets used to be 600. WHO changed it.

I think it would be a very good idea to get your gut issues sorted. You may then find other things settle down. Avoid obvious sugary things , and the less obvious which includes carbohydrates like bread rice pasta. Maybe you have some food intolerances that could be identified and addressed. Maybe your gp could also test your HbA1c which measures your glucose over an extended period of time. Might give you an indication if sugar is involved. (You don’t have to be overweight to have raised levels.)

It’s a journey but little by little you’ll get there.

Good luck 🤞

[light]

DO NOT WAIT ! You should be seeing specialist, MPN!

Wishing you well.

[MAP44]

So much good advice given! All very well said.

My 22yr old daughter has ET and I have PV both diagnosed in late 2020 & early 2021. Surround yourself with medical staff that supports you. We are both thriving and planning on living very long lives. ❤️🍀

[Ettu]

hi there

For me , you’ve been going through this for two years and it’s time to insist on seeing a specialist haematology consultant.

I know it may be difficult to be assertive with your Gp as you’re so young but your rights as a patient are the same if you’re 21 or 61. You’ve had the resourcefulness to find and come on here so maybe I’m doing you a disservice !

Quite rightly you want reassurance but really, with the best will in the world , no-one here can give you that nor, I fear, can your Gp - only a specialist can.

Good luck - keep us posted.