Hydroxycarbamide

[jodary]

Is it possible after 5 years on low dose 500 daily to become intolerant to Hydroxy? Platelets only down to 700s but am reluctant to increase while not feeling great. My GP thinks I have symptoms of anxiety but I also have an under active thyroid so it’s not clear cut. The thyroid issue is the reason I’m reluctant to try interferon, it’s never been properly managed by GP and I have to turn to thyroid UK on here for advice on results. Any other treatment options ?

[hunter5582]

Yes, it is possible to become intolerant to HU or any other medication over time. It is also possible to become refractory to a medication that previously worked. Moreover, some HU adverse effects take years to manifest.

Having a co-occurring thyroid issue complicates your situation. Thyroid issues can cause a host of problems. The thyroid gland regulates metabolism and energy levels. Imbalances in thyroid hormones can affect the nervous system, mood, and overall emotional state. GPs would not be as familiar with hypothyroid issues as an endocrinologist. Given that you are experiencing inadequate care in this area, suggest that you consult with an endocrinologist.

There is a caution with the IFNs if you have an endocrine disease. This does not mean that you cannot take the IFNs but does require close monitoring. Note that the IFNs can cause either hyper or hypo thyroidism. This would be a good reason to consult with an endocrinologist and a MPN Specialist in your situation. You need a care team that can properly monitor and treat the co-occurring conditions.

There is also the option of anagrelide to treat the ET as well. This is a second-line option. HU or IFN are the preferred options for ET. Ruxolitinib has also been used off-label for ET but is very expensive and harder to access. There are also meds in clinical trial such as Bomedemstat that could be an option for some. It would be best to consult with a MPN Specialist about all the options that are available.

Wishing you success moving forward.

[jodary in reply to hunter5582]

If only it was as simple as consulting an endocrinologist, I have done so previously and been told as my results are in range I am apparently fine! No matter where in range or how I feel. Have done this twice now and the Thyroid UK branch of Health Unlocked are full of people in same situation. It’s difficult to know what causes what symptoms with more than one condition. And I admit to having some anxiety issues around how I feel and the lack of support. It’s easy for endos and gps to blame the MPN. Have had no success finding an MPN specialist as yet . Anagrelide was mentioned but Im aware that this could cause more side effects

[hunter5582 in reply to jodary]

It is complicated when you have co-occurring conditions with symptom overlap. The stress of managing this is anxiety-producing for everyone. MPNs can cause a host of issues that can make it hard to nail down exactly what is going on. I hope your search for a MPN specialist is soon successful. I expect that will be vital to sorting things out.

Thinking a bit out of the box, have you considered consulting an Integrative or Functional Medicine doctor? These two similar disciplines look at medical issues from a systemic perspective. These docs will often find the links that occur with co-occurring or hard to define issues. I have a doc from this perspective that has been very helpful in managing the systemic inflammation I experience.

You can Google Integrative medicine docs. Here is a link to Functional medicine docs ifm.org/find-a-practitioner

Wishing you success moving forward.

[jodary in reply to hunter5582]

Thank you , could you explain a bit more about how it works if you consult one of these doctors ? Are they involved in tests or do they work alongside your current drs ? Am in the UK and getting nowhere with NHS but to pay privately would not know whether to pay for private endocrinologist, MPN specialist if I could find one or this new idea .

[hunter5582 in reply to jodary]

While I believe there are some Integrative Med docs in the NHS, I think that many would be in private practice. I do not know if there are any Functional med docs in the NHS. Here is a brief description of these two similar disciplines. booneheartwellness.com/

These docs can become a part of your care team who can separately evaluate your situation and prescribe treatment. Both disciplines look more holistically at the patient and pick up on things other doctors miss. They are also more competent in the use of complementary health interventions and how they interface with Western medicine. My doc does both Integrative and Functional medicine. She is a valuable member of my care team who is able to focus on how conditions are interrelated. The body is an integrated system where one thing can affect another. It is great to have a doc who looks at care that way.

In the situation you are in, finding a doc who would truly look at your situation in a holistic fashion could make a significant difference. My perspective is that there is nothing to lose by trying other than a bit of money. It is not cheap to pay privately buty can be well worth the investment.

Wishing you all the best.

[Auggie17]

I feel your pain as I have been going through a lot of health issues that are being ignored based on lab results. I feel awful due to heart issues and stomach issues. None of the specialists I go to have no idea what MPN is. I have started going to a concierge doctor who is quarterbacking my care. He is determined to find the source of my issues and is in communication with my MPN Specialist at MD Anderson. How you feel matters! Keep pushing your doctors or find a new one that will listen. Best of luck and keep us updated .

[Cja1956]

Hi, Jodary. It’s definitely possible to become intolerant to hydroxyurea because it happened to me. I took it from 2008 to 2016. The reason I stopped it was because my hemoglobin numbers started dropping and my platelets started to creep up into the 900s. The doctor changed me to Jakafi. I didn’t realize at the time that I was changing from ET to MF because my doctor didn’t want to give me another biopsy. In 2019 I changed to a MPN specialist and she took me off Jakafi and put me back on hydroxyurea. Within a couple of years, I was getting terrible side effects like mouth, sores, chills and terrible breathing problems. When I became pre- transplant June 2023, they put me back on Jakafi and it was like I got my life back. All those symptoms disappeared.

[jodary in reply to Cja1956]

Is Jakafi something that’s available in UK? I’ve only been offered interferon orAnagrelide ? Neither appeal reading side effects. My haemglobin isn’t dropping but platelets are riding hence them wanting me to increase hydroxy

[Cja1956]

I live in the US so I wouldn’t know. There are other people on this site who would be able to answer your question.

[jodary in reply to Cja1956]

Thank you x

[Mostew]

If you sè an integrative dr. They can look at tests done by hospital ,discuss with you aĺl aspects of how you are feeling and maybe recommend various supportive things, based on a more rounded approach to how you are doing. Won't JUST focus on thyroid or MPN .

like you I have thyroid condition.

I'm lucky to have great support , always feel energised and inspired after appointment

Hope you find someone you can trust