Thrombocythemia - GP can’t find the cause

Posted by cherilynb @cherilynb, Apr 18, 2023

Hi, I’m hoping for some advice. I’m in Queensland, Australia and have recently been diagnosed with Thrombocythemia, however an underlying cause is unknown and the GP’s response is to just monitor my platelet levels every six months.
I have had elevated platelets for approximately 20 years, which have ranged from 500 and upwards to 800’s. Currently they are sitting in the low 600’s.
Prior to this diagnosis, I was referred to a Haematologist for a Bone Marrow Aspiration back in 2019. The Haematologist was quite dismissive and his exact words were I didn’t fit into a box. The results showed depleted iron levels in my bone marrow, however blood work taken on the same day should my blood iron stores to be in the normal range. The haematologists suggestion was to put me on iron tablets to try and increase my iron stores in my bone marrow, but within 2-weeks I gained close to 20kgs and felt terrible. My GP told me to stop taking them, but I’ve never been able to lose all the weight I gained.
The GP has just recently done a genetic test for Hemochromatosis and thinks this could be an underlying cause?
I’m so frustrated that they just think I’m a hypochondriac, but I know my body and I am so fatigued. I need to have a nap during the day which is really starting to affect my life and work.
I suffer from anxiety, brain fog, mood swings, low sex drive, night sweats, aches & pains mainly in my neck and legs. I get migraines, which then result in blurry vision and when I’m overly stressed, slurred speech. I have irregular heart beats, which my fitness tracker keeps track of and it’s not something that I can seem to even control. It can happen when I’m relaxing or when I’m laughing. I bruise quite easily and when I first developed symptoms 20 years ago I lost 14kgs in 2 weeks, this time round though I am struggling with maintaining a healthy weight.
Any suggestions on how I can get my GP to do further tests and take me seriously, as I know there is something not quite right.

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Lori, Volunteer Mentor | @loribmt | Apr 18, 2023

Hello @cherilynb Feeling that your doctors are dismissive is one of the most frustrating things. Especially when you’re experiencing all of these symptoms and not finding answers.
Thrombocytosis is a disorder where your body produces too many platelets. There can be a number of health issues related to this including a higher risk for clots and strokes. I’m sure you’ve researched this before but I’m putting in a few links below explaining thrombocythemia/thrombocytosis.
https://www.mayoclinic.org/diseases-conditions/thrombocytosis/symptoms-causes/syc-20378315
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https://my.clevelandclinic.org/health/diseases/24031-essential-thrombocythemia
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Your GP is much more proactive about this than your hematologist was, and it’s a positive sign that there is more testing ordered to get to the bottom of your symptoms.
I found a good article on Hemochromatosis, the test you recently had.
https://www.mayoclinic.org/diseases-conditions/hemochromatosis/symptoms-causes/syc-20351443
Just a thought, but has your doctor tested your thyroid levels and hormone levels?
https://www.verywellhealth.com/thyroid-disease-symptoms-3233221?utm_campaign=686803676-432034&utm_source=bingpaid&utm_medium=con&utm_content=73873726947500&utm_term=o-thyroid%20symptoms-thyroid%20symptoms&msclkid=af840aa3999719b61a6f6e9d319388e8
As for getting your GP to do further tests, when you find out the results for the hemochromatosis test, if they are not positive, ask about your thyroid levels.
Did either doctor mention about taking a low dose aspirin or blood thinner for the excessive level of platelets? There can be acquired genetic mutations that cause thrombocythemia. Did you have any bloodwork to look for the cause of your high platelets besides the bone marrow biopsy 4 years ago?

1995victoria | @1995victoria | Apr 19, 2023

The standard of care by World Health Organization for essential thrombocythemia is a bone marrow biopsy with aspiration. You might want to print that out and bring to your next hematologist appointment. I don't think they really know what causes ET, but shouldn't be ignored. Depending on your age, treatment might be a baby aspirin and hydroxyurea. Elevated platelets can result in stroke or heart attack and should be kept under control. Good luck with your doctors.....

mavic0406 | @mavic0406 | Apr 19, 2023

Same problem with me but I have ITP, I’m from Perth Australia, and I was diagnosed with ITP after my Booster shot of Covid Vaccine, I don’t know why the GPs in Australia are not that kind of serious about their patients conditions, because sometimes my platelets getting drops and sometimes back to normal, I don’t know what is happening, because sometimes even my platelets are normal, I'm still easily bruising, which is I think not normal, even my GP said its normal, I feel some joint pain, my arm is so weak my muscle as well, that I can't carry heavy things at all, I have rashes in my body that was so itchy, sometimes it goes on and off, migraines that last for almost 1 week, but until now I'm still thinking about why I'm getting easily bruises even they said my platelets or blood is normal, I'm so stressed about this. I don't know what to do.

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