Hello!
Just wondering if anyone else struggles with being constantly unwell. Over the past few years I have had more colds than I can count, a few bouts of gastroenteritis and at least a couple of serious infections (including COVID), one of which required hospital treatment (not COVID). Does anyone know the impact of MPNs on the immune system and if it makes us more susceptible infection? What can I do to improve this situation? I have ET.
Thank you! Cal
It’s hard while you are feeling so unwell to feel motivated
Can you afford to see a functional dr. Or perhaps if there is a good Ayurvedic practitioner who can support you . ?
Meanwhile I would recommend an anti inflammatory diet and check your vit D level , iron etc .
Immune compromise would not typically be a component of ET. It can result from some of the medications used to treat ET however. What is quite common is systemic inflammation as a result of dysregulation of the JAK-STAT pathway. Our bodies produce too many inflammatory cytokines which causes many of the secondary symptoms we experience.
As Mostew suggests, consultation with Functional (or Integrative) Medicine doc can be very helpful in managing the kind of issues you are asking about. There are ways to deal with systemic inflammation and bolster your immune system that may help. Here are a couple of links that may help you find a provider.
Functional Med - world-wide ifm.org/find-a-practitioner/
Integrative Med - USA fonconsulting.com/resources...
All the best.
I agree with Mostew. Please get your vitamin levels checked as a baseline. Typically the gp will do vit d, folate and B12. Also get iron levels checked, ferritin. And your thyroid hormones, just to be sure. Always ask for a print out of your results, it should have the ranges, and then look where your levels are within that range. A functional doctor would be a good idea as “ in range” is not always the “optimal level”. On a personal note, along with discovering high platelets 5+ yrs ago, my vit d , b12 we’re very low. Since correcting these, plus improvements to diet( cut out sugar etc) I haven’t had a single cold since then. Not even a sniffle. With your gut issues, these need to be sorted out too. I guess you had antibiotics at some stage, which whilst necessary at the time, they don’t help your good gut micro biome. Maybe they are still not recovered yet.
Thank you all for your suggestion of a functional doctor. I hadn’t thought of this or had this suggested before.. I have an underactive thyroid (Hashimotos) and autoimmune gastritis as well as MPN. I have also had low vitamin D and iron previously so perhaps none of these are really in the right place for me. It’s possible as you say that antibiotics may have thrown things off or perhaps the preparation for a colonoscopy. After a quick search it turns out there are many in my local area in London so will give this a try.
I’ve got Hashimotos to. And like you have had low vit d and ferritin . Vit D went slightly to high after supplement. So taking lower dose now.. stopped over summer
So glad you are going to explore F. drs.
Let us know how you get on .
Meanwhile I would suggest taking some probiotics Pro-Ven Acidophilus and Bifidus with digestive enzymes are good. Or look at ‘optibac’range
When you see someone they may recommend others ,after assessing you . but meanwhile as a general one those would be a good start.
Immune system compromised?
Hydrea, immune system and Vitamin C
Boosting immune system.
Effect of Covid on Platelets
What does the fatigue feel like?
