I have Hashimoto's thryoiditis (auto-immune condition causing low thyroid).
As such, gastro-intestinal tract is a major player - no gluten, no night-shades (tomatoes, potatoes, all peppers), inflammation is a huge battle.
Two months into HU therapy, I was unable to keep solid foods down, and everything I ate turned into complete liquid (diarrhea).
Anybody else with Hashimoto's also have MPN's (PV in my case) have a similar experience?
Doctor would not believe there is a connection but the only thing that changed in my daily routine in Nov-Dec was the HU. Then two months in, nausea, vomiting, and diarrhea...
Fortunately changed doctors, and put on Interferon.
Thanks for any feedback.
Howard
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hsdale3
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As i am sure you will hear from others, GI issues like nausea, vomiting and diarrhea are common HU adverse effects. I am not sure why a doctor would think that these adverse effects were not connected to the HU. You are fortunate that you were able to change doctors.
The interferons come with a warning if you have autoimmune disease. I would assume you discussed this with the new doctor when deciding on an interferon rather than Jakafi.
There are others on the forum with both an MPN and an autoimmune disease, including Hashimoto's. i am sure they can give you advice informed by their own experiences.
Glad to hear IFN has helped. Hoping I will see the same/similar results. I though about Jakafi but the list of side effects scared me off. Two different friends of ours had experience with IFN and both had very limited side effects so even though I have Hashimoto's it made sense to me. We shall see! Thanks again.
Totally agree with what Hunter has said. It seems almost unbelievable that doctors still seem to have little knowledge about side effects, especially so in your case. Thank goodness you were able to change doctors, wishing you all the best and hope you find your life improving.
I can't add much to this discussion. I'm on HU for a few years now and had a bit of a rough start but all good now. I did want to congratulate you on changing doctors. Sounds like you made the right move. Good luck with the interferon.
What Hunter said- my mouth has still not recovered from the hypersensitivity caused by HU which I stopped taking in favor of Besremi after only 4 months on HU.
It also seriously worsened my gastro-esophageal reflux disease, which was normally completely controlled by Prilosec, but while on HU, it was as if I wasn't taking anything for it.
I'm much better off on Besremi- and I hope you find that too!
Hi Howard, I have PV, I do not have Hashimoto's, but I had the same on the double dosis (1000mg) Hydroxy. After two weeks I got severe diarrhea. The day after I stopped taking Hydroxy, the diarrhea stopped. After 2 weeks rest I started with a single dosis hydroxea (500mg), that went alright, but did not had any effect on my red blood cell count, only on the platelets, and minor effects on my stomach and intestines, so I stopped with that. I am now on interferon (Pegasys), but it is to early to see any effect.
I have hashimotos and suffered with gastro/digestion problems, off gluten and watching what I eat. However when I was on Hydrea for 6 months, my problems grew to be so uncomfortable I didn’t want to leave the house. I stopped Hydrea in Nov and began to feel ‘my’ normal in the weeks following. My eyes are almost back to normal. When we return from overseas, they will start me on Pegasus in June so hopefully I have a better run on this next medication.
I wasn’t aware of any problems with an autoimmune disease and interferons, the haematologist didn’t mention it so I will ask when we return.
My eyes got very dry, I’d never had a problem before, Cherilyn.
Then they felt like they had sand in them then gravel. The optometrist said I was having an allergic reaction so onto special drops. They did settle for a bit after I stopped the Hydrea tho it still pops up with the allergic reaction now. I need drops most days for my dry eyes now. I was told that happens to some people if they have been on chemo. I keep drops in my bag now for easy access. Best wishes 🌸
Thank you Pachena, I eat 2/3 Eggs everyday ,the Lutein and Zeazanthin and Biotin is known to be very good for eyes.
I do Intermittent fasting so my first meal is around 1/2pm, I call it my Brunch. Another Tip, is the longer you fast for it REPAIRS ones body, I am now doing a 20 hour fast, I am never hungry....last light food 5pm....
Tip number 3....
It was found that people who have pain in their bodies, it turned out no Ailments, however all down to
Vitamin D DEFICIENCY....
Plus, this was veryInteresting, all Covid Cases also had Vitamin D DEFICIENCIES.
on Hydroxy I had same gastric problems horrendous inflammation digestive tract & constant diarrhoea. After 5 weeks of no improvement I came off the drug . Contacted an MPN Dr & got put on Interferon. 2 years on it now & excellent once doseage is correct. I now inject 45 monthly & bloods staying normal range.
I am 69 female. UK. Lots cannot cope with HU . Julia 👌
Hi, I have ET and take hydroxy. I developed gastritis which I did not have previously, the gastro specialist advised me that the drug would be to blame and the haematologist said not. As my platelet levels were increasing a dose increase of hydroxy was recommended. I decided not, as by this time I was really uncomfortable eating and drinking. So I have 'jumped ship' as it were and I am now on pegasys and gradually coming off hydroxy (two poisons together at present). Hopefully I should see some improvement soon in my gastritis as I really do not want to start taking medication for that if I can help it. Best wishes.
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Thanks again.
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