I am still trembling and being shocked internally. Could it be from eight doses of gadolinium injected over two years? I am a MBC patient and have scans regularly. I am scheduled for another such scan on Monday and am quivering in my boots as wells as internally
I am getting monthly shots of B12. A neurologist has suggested upping it to once a week. I have to get that passed by the GP. Any info concerning the gadolinium. would be so helpful.
Thank you!.
You could try asking a dispensing chemist - though it probably isn't a drug they actually dispense regularly if at all. Or you could mention it before the scan.I doubt that there would be an interaction with B12 but I'm not a medical professional.
I really know nothing about gadolinium but I do know that there is a reasonable amount of information. I did a search on this site - some links will just mention it, others should have more comprehensive information:
radiopaedia.org/search?utf8...
Whenever I have looked up other things up on that site, it has appeared to be accurate information. At least it should give you a start.
Hi, it may be that you are not terribly good at getting rid of metals, and that could be epigenetic, due to a triggered SNP or SNPs, like COMT or MTHFR affecting methylation, or lack of glutathione/gluathione absent genes. COMT for example may affect removal of metals and catechol oestrogen metabolism and neurotransmitter processing but its function is slowed by excess oestrogen. You don't even have to have a SNP to have slower COMT function if your oestrogen is high. Just having a SNP doesn't mean it is affecting your health, neither do they work independently, more like part of an orchestra, so you have to consider the picture as a whole, but finding out belatedly where my potential vulnerabilities lay made a confusing long-term health picture somewhat clearer. sciencedirect.com/science/a.... I take glutathione, use magnesium to help improve symptoms of slow COMT (which is magnesium-dependent), keep stress to a minimum, and take a little methylfolate with my B12. (I didn't just check genetically as this means little, I checked how well I was breaking down waste products via the liver, and am trying to improve that). The other possibility to investigate is mast cell dysregulation. Gadolinium is believed by some to cause mast cell degranulation and histamine release, but mast cells release far more mediators than just histamine. Effects can be very wide ranging. Even having an MRI without contrast can cause mast cell degranulation, as I know from personal experience. I felt like I'd been strapped to a pneumatic drill. I stopped using everything I could when I started to react to medication, food, perfumes etc so have never had gadolinium myself. My best wishes to you.
Wow, I am frequently so impressed by the shear level of knowledge of members in this group! Thank you for your extremely interesting reply.
I feel that you may well have the key to unlocking some of my problems (I don't seem to methylate properly - I usually need stupid amounts of methylfolate - or would need methylcobalamin - to do OK) but I feel I don't know enough to even ask you the right questions!! 😀
Very glad if it helps you to make some sense of things! I am no expert and methylation seems to be complicated. Some cannot stand extra methyl groups at all, others need more - depends on which SNPs you have and which of them have 'expressed' and all of the other epigenetic stuff which in the end is far more relevant it seems to me, as any SNP may never express and you can exhaust any system by overload so don't need to have a SNP to have a problem, if you follow. I found I made some neuro improvements when I started some methylfolate, which I hadn't had with methylcobalamin alone, but only found out the genetic stuff afterwards. As I'm the 4th generation of 5 (known) with odd B12 or PA, I found it all quite enlightening. There is a lot of somewhat questionable information especially about MTHFR etc online, so don't believe everything, but I do think methylation worth a bit of investigation. This is an old page so the tests may no longer be available, but it does include some cautions and links that may help you begin purehealthclinic.co.uk/heal.... Best wishes
Thank you very much! You have put it in a clear way that I do understand.
I know my Dad had a problem and possibly/probably my Mum does too (but sadly she won't speak to me because she can't cope with my illnesses) while several of my aunts, uncles and cousins definitely have vitamin and mineral deficiencies - and unusual heart arrhythmias!
I've had a month of feeling good but have been pole-axed since I had my 3rd Covid jab on Thursday. Thank goodness I had it - I dread to think how bad I'd be with the real thing! I'll look into things once I can chivvy my brain into action again. 🙄
I'm lucky that I'm under Addenbrookes for my GI tract and immune system issues so do have some access to the most brilliant help - but have to know the right things to say/ask for in the first place. I can't waste their infinitely precious time.
Thank you again!
My pleasure. Sorry to hear about your dad and mum and communication difficulties. It isn't easy for family to cope or understand always, sadly.
Prior to Covid, I'd have said that it would be very unwise to even mention methylation or the folate cycle to anyone in conventional medicine, but it seems that these things might be slowly changing. Those 4 articles referenced in the PAS Spring Newsletter about B12 and methylation in Covid can only help.
I should say that although homocysteine is generally regarded as a good measure of low B12 or low folate, at cellular level, there are multiple processes involved in methylation and additional potential SNPs including MTR and MTRR. I have a variant in MTR and was advised that homocysteine may therefore be lower but demand for methyl groups higher as they are being used faster.
( "MTR - The G allele is associated with decreased levels of homocysteine as this
genetic variant increases the activity of the MTR enzyme (conversion of
homocysteine to methionine) possibly causing a decrease in methyl group
availability.
The increase in MTR activity may cause methyl-B12 to be used more
quickly than normal and those with this variant may need to support
adequate methyl-B12 levels.
Methionine Synthase (MTR) encodes the enzyme that catalyses the
conversion of homocysteine to methionine and is dependent on methyl
cobalamin (methyl-B12). A genetic variant has been associated with a
change to the enzyme structure near to the cobalamin binding site.")
You may find this on increasing riboflavin interesting too. I only take the usual 4 or 500 mcg methylfolate in total, split into 3 doses during the day, but I do also take riboflavin.
chrismasterjohnphd.com/blog...
I hope you soon feel better from the jab and can make some headway.
Sorry for the delay in replying - I wanted to reply more fully but having been crook for several days I'm short of time again this morning, sorry!
This is particularly interesting and helpful because I am convinced some of my lack of energy release is due to a lack of another one of the B vitamins and could easily be B2.
No problem, don't apologise please! As usual lack of energy and chasing my tail. Talk whenever you feel up to it x
Thank you for your in depth reply. Candidly, the more I read, the more it becomes overwhelming. Because I am a metastasized breast cancer patient, I am being treated by an oncologist in one place and an interventional radiologist/surgeon in another, all part of Memorial Sloan Kettering. Because of this internal trembling, I have sought the help of a neurologist at Rutgers/Robert Wood Johnson after two waste- of -time private neurologists. The meetings with her are spaced out in months, So little progress is made. She now wants me to go to a rhuematologist. I am throwing up my hands in despair. Meanwhile it is getting worse. The neurologist wants me to have a weekly injection of B12. I now have to go to the busy GP and t ry to get his office to give me weekly injections.Before your reply, I knew nothing about methylation. Now, I will read more about it and try to figure out if it applies to me. Then, if it does, I must try to acquaint the doctor with it.
You are more than welcome. It can become overwhelming, even for those, like me, who haven't had to cope with all that you continue to deal with. No doubt you are already on as much as you can stand of an anti-inflammatory, auto-immune type diet. I use calcium d-glucarate and milk thistle to try to lower my oestrogen and support liver to help clearance. My best wishes to you.
Dear bookishInterestingly, at least to me, is that until June 2015, I considered myself the healthiest of everyone I know. This included my kids as well as my friends. I knew very little about the internal workings of my body because I did not need to know. I too am a reader but consider myself a neophyte concerning anatomy and physiology. Why do you want to lower your estrogen? No, I am not on any special diet with the exception of using lactose free milk. I like to cook and I cook with fresh food all the time. I am really ignorant of a lot. To begin with, what is the advantage of calcium d-glucarate over calcium?
Hi, I probably didn't know much more than you, but looking back I had had signs that things weren't quite right going back to childhood, so finding out some of the reasons why that might be has been interesting. If sometimes frustrating and depressing it has mainly been encouraging, life-affirming and empowering. The reasons have been many and varied but often epigenetic, that is lifestyle, food, stress etc, so some things I could possibly have done differently had I known better and some I couldn't, not just the underlying genetic weaknesses, which do after all need 'triggers' in order to possibly cause us difficulties to a greater or lesser extent.
The testing that I did showed that I am bad at processing oestrogen (and metals and neurotransmitters and absorbing B12 and folate). This all makes sense over many years. As too much part-processed oestrogen (actually oestrogens, as you will know) hanging around for too long tends to increase your risk for all sorts, I'm doing my best to avoid exposure to anything oestrogenic and improve my ability to use it and remove it.
Here is some info about calcium d-glucarate (which was recommended by a practitioner that I have had help from) webmd.com/vitamins/ai/ingre....
Turned out that gluten was causing me problems, so I started reading more about food intolerances and the effects that they can have, which has also been enlightening. I also like to cook and if you are eating a good diet of fresh food you may not need to be overconcerned. Some say that gluten is commonly a trigger for autoimmunity, others differ. All I can say is that all of my conditions slowed considerably when I went onto an autoimmune diet (which excludes the commonly inflammatory foods like gluten, dairy, sugar, processed oils, nuts, seeds, eggs, nightshade vegetables for a period of time then slowly reintroduces one thing at a time). You can test for these instead of eliminate and reintroduce, but that gets expensive. Datis Kharrazian gives some more info here drknews.com/autoimmune-gut-...
Hope that helps a bit.
PS sorry, just noticed that you have Hashis, Autonomic and PA too. You might find DK's book 'Why do I still have thyroid symptoms when my lab tests are normal' useful. Plenty about things that you can do to help thyroid function and might help explain how they (and oestrogen) all link together. His book on the brain is also a fabulous read, for later maybe.
Cheers
I don’t know anything about gadolinium, but whenever my b 12 dips, my internal (mostly in the chest/throat area) and external (hands) tremors get much worse. Maybe you would benefit from more frequent b12shots?
Thank you! Attempting to get the GP to prescribe more B12 injections is my very nextjob. I am hoping that he will and that it will quiet down my internal trembling.
Good luck! 🍀
Thank you! Today,I am bracing myself to try to convince the GP to give me weekly B12 and the replies on this forum have emboldened me.
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