MTHFR MUTATION is hard to explain so Google it. People with it are likely to have CFS, and Fibromyalgia.
I also had hashymotos disease. And my thyroid was removed in 2012. I have the DVTs and PEs. I have problems with meds and metabolism. This is no quality of life.
you are more than likely to have b12 deficiency.
Pernicous anemia
you are correct. I'm have chronic low B12 and it causes Homocysteine levels to increase. That is why I have had 5 DVTs and some of those in to pes.
are you getting regular injections
I take one every 2 weeks. My B12 levels stay below 300.
it would be a good idea to join the pernicious anemia forum. Knowing you are on injections and bloods reveal a level of 300 is still low.
are you on warfarin Tara to prevent further PE and DVT as this will prevent further ones
I take xarelto. I did take Coumadin but was taken off at Mayo bc they couldn't find clotting disorder. I had so many pes in my lungs, abdomen, DVTS in both legs. But they dcd. I had another DVT in 2020 and several PEs. Not as bad. The Dr. Eho found MTHFR And hemocystine wawas very elevated they put me on Xarelto.
Every time I have had a PE, even the time through out, I felt like I had GERD. Bad Case. By the time I got to ER I had coded. Long story.
I personally think that Genetic testing and phar magenetic testing like GENESITE can map out the meds according to your DNA . I HADit done in 22013. And I have told Drs that antidepressants didn't work since I was 16. They actually made me worse. Finally a Dr listened and did that test. And according to it. There are 2 antidepressants that work for me. The others are bad for me and can cause suicidal thoughts and they did. So if you can get that test get it.
Pharmacogenomics is a very interesting area of science and is coming to the UK to help with 400 of the more common drugs in use. You mentioned oxycodone and there are a group of people that have a gene that codeine just does not work with and produces no beneficial effect. But there are other drugs that in some people will have negative effects whereas with the majority they will be a god send.
We are a variable in every treatment regime and not just a one size fits all proposition. Would help play into the variability of treatments with people with fibro but I think it is not that simplistic either.
Pharmacogenomic testing in the UK is not standard and as I understand it, the cost in the US could be as high as $2000 but the recent push in the UK for more standard testing could get the price down to £100-150 but I suspect any private test will be more in line with US costings.
I would see this as being helpful in avoiding some medications rather than accessing better medications for fibro and do not see it as being diagnostically or therapeutically beneficial for fibro at this time.
The guardian and the BBC did articles about 5 months ago on it. Is a very interesting area to follow and could be significant for a lot of people and may reduce a number of common ADEs as well.
It has all class of meds. Pain meds. I havee issues with those. Even with the paperwork in hand, some Drs dont get it. Oxycodone doesn't work. I lack something to instigate it. Not the right word.. but it is still a hassle.. but im VERY persistant and u can't argue with science.
I think you can probably argue with all science, can't you, isn't that kind of the point of science?
Given that I am across a lot of science I was surprised that I had not heard of this before, Can see some research looking at it and it appears to be taking the tack of psychological frailty of overlap with fibro and the link with MTHFR and mood disorders. Small sample research and relatively new, fringe.
Will keep an eye out but not seen anything that is strong and definitely not anything that has made its way into guidelines as of this time.
hi TooTiredTara
So sorry to hear about your diagnosis, its a combination of many conditions with so many meds to take. I suffer from Lupus Anticoagulant and Pro Thrombin Mutation which if not monitored with regular INR blood tests can lead to PE and DVT. my problems started with my 1st blood clot in 1996 a DVT followed a year later to the date a PE. Historic blood clots with fibromyalgia osteoarthritis with many other health issues where medication changes are taking a toll. I also have Atrial fibulation sometimes i just wish i could get some relief probably what everyone else feels. Sending you huge gentle hugs. 🫂
Have you tried turmeric to treat the fibro? If the drugs dont work for you.
I found this with the meds i was offered for it. I came across turmeric tablets (that contain a little black pepper, to help you absorb it). They helped my pain so much!
I checked with the doctor, and the reason why they work for me, is because i must have inflammation in my body. I take other anti inflammatory supplements too now, along with other vitamins that im low in.
They are a slight blood thinner (so check with doctors) but it just takes me a little bit longer to stop bleeding if i cut myself than the average person to. But ive been taking them a long time now.
I take them with food, this is important with alot of medicines etc.
I take them twice a day, to space them out.
Might help your pain too?
Any one addicted to diet coke
brain fog
Fibro diagnosis
Lyrica
Feel as if i have had enough
