supplements with essential thrombocyethemia

[BeckyDing]

Hi

I am back in hydroxi after suspected added issues to thyroid being on pegulated interferon for a number of years. Just wondered what supplementation anyone would recommend for our conditions - having a terrible time health wise and had burning leg and weakness issues - I had a car accident in February so bad dizziness and headaches daily- waiting for tests through neuro - in the meantime suggested I try electrolytes to add to my smoothie - already have vit d and magnesium and wondered if anyone had anything else - looking at coenzyme10 and vit C with querticin to help with allergies at the moment thanks Becky

[AnBee]

HI Becky Can i suggest you look to your diet to remove all sugars and reduce anything that is sweet or breaks down to sugars ie flour, fruit etc, as these are very pro inflammatory also try looking to Keto or Carnivore diet there is sooooo much on the internet from drs and scientists. I also recently had to stop Pegasys for a while as my thyroid started to malfunction. I supplemented then with iodine, vit d and selenium as I had all the symptoms of underactive thyroid. I improved my whole system dramatically through the above approaches and health and well being have returned. I am back on Peg now and continuing my thryoid supplements and am very alert to any further changes to thyroid and will have to consider other meds if this happens again. Thyroid malfunction can affect any one of the internal systems so you can feel very unwell when this occurs

[BeckyDing in reply to AnBee]

Thank you so much for your reply - I have high thyroid antibodies which no one seems concerned about at all - last set of bloods another thyroid test was slightly raised - this was after hospital admission- the hospital didn’t tell me but my gp did after and said my thyroxine level fine so not worried but the test where my brain is working to process the thyroxine was slightly higher … again gp said wanted to test again in 6 weeks but shouldn’t be causing me the symptoms I am getting - I have recently changed my diet to a fairly low histermine one so I have cut out nearly all processed foods and sugars and sticking to some fruit, veg, wholewheat pasta and rice and lean meat and fish - been in this last 2 weeks and losing a lot of weight quickly and wasn’t over weight before so concerned about that - just drinking zero water and certain herbal teas also - my body hasn’t been right since Covid back in June 2022 and after another dose of it back in December and Pegasys continuation until Jan I do think my body just felt like packing in after the accident - concerned if did the carnivore i am cutting out to much at the moment?? Will have a look though - thank you

[AnBee in reply to BeckyDing]

Yes the car accident trauma itself can be related to higher inflammation in the body. Sorry that happened to you on top of what you are dealing with. High TSH can be pointing to the fact your thyroid is struggling and in Hashimotos ( auto immune) or just low thyroid you can feel like trash. It often doesn’t show up in blood tests until it has been established in the system. In Other words they aren’t reliable and the symptoms burden is more important at that point. It is also a black box warning in the interferons and should not be overlooked.

Carnivore is much more extreme and Ketogenic is easier to transition to. It is the use of ketones as an energy source as opposed to carbohydrates using blood sugars and the difference is the big spike in insulin which can cause a marked inflammatory response. Of course you need to make the choices that work for you but reading widely and looking at research in all these areas it is apparent that swinging insulin can do a lot of damage. I have chosen carnivore for the last 4 months as I feel my body changing and it has been truly remarkable in terms of sleep and joint pain and and energy. I’m not saying that it can benefit the MPN but definitely for overall well being it’s amazing. There is a Hungarian Dr/Scientist who has been using it for the last 20 years for cancer treatment and has many peer reviewed papers that no one will publish. Go figure!! 😊

[Mwalimu]

I have received great help from a Kinesiologist who has prescribed dietary supplements. I am on HU, have ET and was diagnosed in 2011.Best Wishes, Sallie

[BeckyDing in reply to Mwalimu]

I am actually sending some hair strands to a Kinesiologist this week for food testing and also ordered Dutch Test for my hormones from the same place so hopefully can get some more information when tests back - thank you so much

[hunter5582]

Your situation is complex with overlapping conditions that may have similar symptoms. I would suggest consulting with an Integrative or Functional Medicine doctor. There doctors look at the body as a whole system and are much more aware of nutrition and how to integrate complementary health interventions into your treatment array.

[BeckyDing in reply to hunter5582]

Where would I find Integrative Doctor? Is this the same as a naturopath? Thank you

[EPguy]

Are your neuro tests including autoimmune (A-I) panels? Some A-I conditions not normally considered neuro can cause neuro complications. I see in a prior post you had troubles after covid while on IFN. Either or both can cause autoimmune reactions. Your accident could trigger some of these also.

I posted a long list of A-I panels I got here:

healthunlocked.com/mpnvoice...

Wishing you success in finding the troubles and feeling better.

[BeckyDing]

thank you - I know I have had some of these blood tests but not sure if all so will definitely check - will request copies of my blood tests from gp - I am waiting for the nerve conduction test - just read your post and did you have 3 of these before you got a positive result? Do you have an AI condition?

[EPguy in reply to BeckyDing]

to BeckyDing

Sorry I missed your reply. It ended up in the wrong reply box.

My only positive among all were the SS-a tests. I just got two more less common tests, both had abnormal results within. LYMPHOCYTE ENUMERATION and IgM.

I have a nasty untreatable A-I caused by a flu vax and IFN. This post explains it and the risks that led to it.

I had a positive nerve conduction after the vax but it got better while worse things got worse.

healthunlocked.com/mpnvoice...

[BeckyDing in reply to EPguy]

I’m so sorry to hear about this - sounds like an awful time for you - how you doing now with symptoms?

[EPguy in reply to BeckyDing]

It varies. Thanks for asking. I'm not twitching on the floor in recent months. Problem with Sjo is it near always progresses, less often as stable as MPNs often are. Looking fwd to promising treatments in phase 3 trials to get a life back.

A few other members have brushed with this IFN hazard but I think my experience may have helped others avoid the cliff.

[BeckyDing in reply to EPguy]

I went back on interferon end of last year and now worried this has clashed with Covid again and kicked it all off - they say it can take months to get out of the system but seems to like affecting my thyroid - was up with muscle spasms again last night but so weird as can’t see them visually but feels like cramping internally

[EPguy in reply to BeckyDing]

You're right about the months. Bes persists even longer than PEG. Near always a good thing, but not when A-I comes calling.

[Mwalimu]

Good luck! Let us know how you get on ..... Sallie