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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Have swollen face, unexplained muscle loss, probs. w/magnesium?
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taniaaust1
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I got side effects (I cant remember now what exactly happened) from Blackmores brand of Magnesium so stopped taking it but then came across Thompsons brand of organic Magnesium (I guess it dont have synthetic tablet fillers, binders etc) and with that organic brand Im fine. So i suggest trying to find an organic brand of Magnesium to see if you can take that without any ill effects.
Swelling can happen in ME/CFS but isnt common (I used to have a hand which would swell up as one of my weirder ME/CFS symptoms).
If you are getting swelling you should be checked for Mastocytosis (which can be systemic and cause symptoms, a multitude of them.. very much like ME/CFS). It is said that many cases of Mastocytosis go undiagnosed. pictures of mastocytosis swelling http://www.flickr.com/photos/mastocanada/4757256737
https://tspace.library.utoronto.ca/bitstream/1807/17688/1/sever_sibbald_d'arville.pdf (long if anyone wants to read up more)
Mastocytosis can be a cause of POTS.
Swelling can happen in ME/CFS but isnt common (I used to have a hand which would swell up as one of my weirder ME/CFS symptoms).
If you are getting swelling you should be checked for Mastocytosis (which can be systemic and cause symptoms, a multitude of them.. very much like ME/CFS). It is said that many cases of Mastocytosis go undiagnosed. pictures of mastocytosis swelling http://www.flickr.com/photos/mastocanada/4757256737
https://tspace.library.utoronto.ca/bitstream/1807/17688/1/sever_sibbald_d'arville.pdf (long if anyone wants to read up more)
Mastocytosis can be a cause of POTS.
Hip
Senior Member
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In cachexia, which is a condition that results in muscle wasting, high TNF-alpha levels are implicated in the muscle loss process. Perhaps this may give you something to go on. The herb cat's claw is a fairly potent inhibitor of TNF-alpha.
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Have you checked your thyroid for HYPERthyroid because the primary symptom of that is muscle loss. And it is NOT TRUE that you
lose weight when you are hyper...according to John Johnson at www.ithyroid.com, it depends on your potassium level...if you are low on potassium and hyper, then you GAIN weight. I went hyperthyroid when I took Iodoral and had all the symptoms but the ones that stood out the most were buzzing in the brain (Well Iodoral is a VERY high dose of iodine, I think if you're only a little hyper it might be just a ringing in the ears), and heart palpitations. The muscle loss thing happens over time if you have that condition untreated. My neighbor's sister had severe muscle wasting before they diagnosed hyperthyroid. Before getting your thyroid checked, go to www.stopthethyoidmadness.com and look at what tests you need to rule out thyroid issues. TSH is not a remotely adequate measure of thyroid function (it is not even output by the thyroid and it can take years to reflect thyroid issues). There is a panel of thryoid tests recommended and if you don't get FREE T3 you really don't know if your thyroid is up to snuff, there is also REVERSE T3, and two thyroid antibodies. Then to determine why your T3 is not right you do also want to see FREE T4 and TSH. Life Extension says the lab reference ranges are too wide to be an effective diagnostic. If you scroll through all their blood tests at the link below you will find what they consider to be more useful reference ranges for the thyroid tests and I have quoted some of the studies they used to defend their position on TSH values:
http://www.lef.org/protocols/append...earch&key=thyroid blood test reference ranges
In a study to evaluate psychological well-being, impairment was found in patients with thyroid abnormalities who were nonetheless within normal TSH reference ranges (Pollock MA et al 2001).
The authors of the Lancet study stated, The emerging epidemiological data begin to suggest that TSH concentrations above 2.0 (mU/L milliunit per liter) may be associated with adverse effects.
The authors prepared a chart based on previously published studies that provides guidance when interpreting the results from TSH blood tests. Here are three highlights from their chart that may be useful in understanding what your TSH values really mean:
TSH values greater than 2.0: increased 20-year risk of thyroid deficiency and increased risk of thyroid-induced autoimmune attack (Vanderpump MP et al 1995)
TSH values greater than 4.0: greater risk of heart disease (Hak AE et al 2000)
TSH values between 2.0 and 4.0: cholesterol levels decline in response to thyroxine (T4) therapy (Michalopoulou G et al 1998)
Despite these intriguing findings, the Lancet authors stated that more studies were needed to define an optimal TSH range, suggested as 0.22.0 instead of 0.25.5 (mU/L). Note: These optimal reference ranges are now expressed in mIU/mL, so the ideal range according to this epidemiological data is 0.352.1 mIU/mL.
If you have depression, heart disease, high cholesterol, chronic fatigue, poor mental performance, or any of the many other symptoms associated with thyroid deficiency, you may want to ask your doctor to defy the reference ranges and try a different thyroid replacement therapy. (so say www.lef.org, and at WrongDiagnosis it seems like most of the people there found brain fog was tied to thyroid problems and cleared when they were corrected).
OH! Don't be scared -- HYPERthyroid is more scarey than hypo, but John Johnson found that all his hypers at his site were low in copper and he believes that copper is required to turn off the thyroid. He has directions for treating hyperthyroid and John Johnson's protocol is also published in a book on Graves by Mary Shomon sold at iherb.com for $10 if it turns out you need to know.
MY THEORY is that copper deficiency affects the thyroid because of the fact that METHIONINE SYNTHASE requires copper as a cofactor. W/o enough copper, one cannot make enough methyls and methyls are used to turn off/on chemical reactions (one such may be the reaction to make thyroxin). John Johnson was a smoker and cadmium binds with cpper or something to make one deficient. Estrogen helps women absorb copper and after menopause it is not unusual for women to become deficient. One of the things copper is used for is cross-linking of collagen...without cross-linking it is like building a house without staggering the bricks -- it makes a weak structure. Blood vessels are made of collagen and if it is not cross-linked, they will burst when a blood clot comes through --which is an aneurism. There are many instances in the medical literature (I could find many examples if interested) of copper deficiency causing the same symptoms as B12 deficiency (because the end result of insufficient methylation is the same). Copper deficiency has additional symptoms such as aneurism. There was a recent lawsuit against a dental fixative which contained zinc as it was causing parathesias in its users as zinc blocks copper absorption (and a dental adhesive is in the mouth all day).
lose weight when you are hyper...according to John Johnson at www.ithyroid.com, it depends on your potassium level...if you are low on potassium and hyper, then you GAIN weight. I went hyperthyroid when I took Iodoral and had all the symptoms but the ones that stood out the most were buzzing in the brain (Well Iodoral is a VERY high dose of iodine, I think if you're only a little hyper it might be just a ringing in the ears), and heart palpitations. The muscle loss thing happens over time if you have that condition untreated. My neighbor's sister had severe muscle wasting before they diagnosed hyperthyroid. Before getting your thyroid checked, go to www.stopthethyoidmadness.com and look at what tests you need to rule out thyroid issues. TSH is not a remotely adequate measure of thyroid function (it is not even output by the thyroid and it can take years to reflect thyroid issues). There is a panel of thryoid tests recommended and if you don't get FREE T3 you really don't know if your thyroid is up to snuff, there is also REVERSE T3, and two thyroid antibodies. Then to determine why your T3 is not right you do also want to see FREE T4 and TSH. Life Extension says the lab reference ranges are too wide to be an effective diagnostic. If you scroll through all their blood tests at the link below you will find what they consider to be more useful reference ranges for the thyroid tests and I have quoted some of the studies they used to defend their position on TSH values:
http://www.lef.org/protocols/append...earch&key=thyroid blood test reference ranges
In a study to evaluate psychological well-being, impairment was found in patients with thyroid abnormalities who were nonetheless within normal TSH reference ranges (Pollock MA et al 2001).
The authors of the Lancet study stated, The emerging epidemiological data begin to suggest that TSH concentrations above 2.0 (mU/L milliunit per liter) may be associated with adverse effects.
The authors prepared a chart based on previously published studies that provides guidance when interpreting the results from TSH blood tests. Here are three highlights from their chart that may be useful in understanding what your TSH values really mean:
TSH values greater than 2.0: increased 20-year risk of thyroid deficiency and increased risk of thyroid-induced autoimmune attack (Vanderpump MP et al 1995)
TSH values greater than 4.0: greater risk of heart disease (Hak AE et al 2000)
TSH values between 2.0 and 4.0: cholesterol levels decline in response to thyroxine (T4) therapy (Michalopoulou G et al 1998)
Despite these intriguing findings, the Lancet authors stated that more studies were needed to define an optimal TSH range, suggested as 0.22.0 instead of 0.25.5 (mU/L). Note: These optimal reference ranges are now expressed in mIU/mL, so the ideal range according to this epidemiological data is 0.352.1 mIU/mL.
If you have depression, heart disease, high cholesterol, chronic fatigue, poor mental performance, or any of the many other symptoms associated with thyroid deficiency, you may want to ask your doctor to defy the reference ranges and try a different thyroid replacement therapy. (so say www.lef.org, and at WrongDiagnosis it seems like most of the people there found brain fog was tied to thyroid problems and cleared when they were corrected).
OH! Don't be scared -- HYPERthyroid is more scarey than hypo, but John Johnson found that all his hypers at his site were low in copper and he believes that copper is required to turn off the thyroid. He has directions for treating hyperthyroid and John Johnson's protocol is also published in a book on Graves by Mary Shomon sold at iherb.com for $10 if it turns out you need to know.
MY THEORY is that copper deficiency affects the thyroid because of the fact that METHIONINE SYNTHASE requires copper as a cofactor. W/o enough copper, one cannot make enough methyls and methyls are used to turn off/on chemical reactions (one such may be the reaction to make thyroxin). John Johnson was a smoker and cadmium binds with cpper or something to make one deficient. Estrogen helps women absorb copper and after menopause it is not unusual for women to become deficient. One of the things copper is used for is cross-linking of collagen...without cross-linking it is like building a house without staggering the bricks -- it makes a weak structure. Blood vessels are made of collagen and if it is not cross-linked, they will burst when a blood clot comes through --which is an aneurism. There are many instances in the medical literature (I could find many examples if interested) of copper deficiency causing the same symptoms as B12 deficiency (because the end result of insufficient methylation is the same). Copper deficiency has additional symptoms such as aneurism. There was a recent lawsuit against a dental fixative which contained zinc as it was causing parathesias in its users as zinc blocks copper absorption (and a dental adhesive is in the mouth all day).
Thanks Rydra. Are those basic tests that endocrinologists do or should I expect to see an alternative doctor for those? I've been do an endo. and he said my thyroid is fine but I don't know if I got those particular tests done. I will have to order a copy of my lab results.
Thanks Taniaaust1 and Hip for the ideas. I looked them up and don't seem to have matching symptoms aside from the muscle thing but will mention it to my doctors.
As for swelling, I swell in the area below my cheeks. Anyone know if this could be lymph node swelling?
Thanks Taniaaust1 and Hip for the ideas. I looked them up and don't seem to have matching symptoms aside from the muscle thing but will mention it to my doctors.
As for swelling, I swell in the area below my cheeks. Anyone know if this could be lymph node swelling?
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I don't have much experience with thyroid problems as I accepted the doctor's accessment based on TSH in the past and it was not until my TSH actually went way out of whack that I was diagnosed and discovered medical science could say I was subsequently healed based on TSH when I was far from. www.stopthethyroidmadness.com says that most doctors seem to believe that TSH is all you need to know and that many people are undiagnosed because of the TSH measure. I got my thyroid panel through www.lef.org. I believe www.ineedlabs.com is cheaper. I just like LEF because I can talk to a doctor about the labs.
You make good points -- copper is very important, but copper can also build up in the liver and become unavailable/toxic in certain situations:
"Biounavailability often occurs due to a deficiency of the copper-binding proteins, ceruloplasmin or metallothionein. Without sufficient binding proteins, unbound copper may circulate freely in the body, where it may accumulate primarily in the liver, brain and female organs. When copper is biounavailable, one may have symptoms of both copper toxicity and copper deficiency."
http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm
Too much copper blocks zinc -- and zinc is needed for protein, fat and carbohydrate metabolism. If one's zinc is low, then that might explain the muscle loss (something I'm experiencing this past year). I just had a hair mineral analysis that showed high sodium/potassium (in other words, extreme adrenal burnout, possibly due to copper, which in excess is overstimulating), and low mineral status due to the catabolism. The practitioner I'm working with says we must first 'slow down' and 'rest' my fried adrenals, and test again in 4 months or so...the metals won't show up until the adrenals have been calmed down.
Just a few of the many symptoms of copper toxicity can include: prostration, behavior changes -- anxiety, racing thoughts, diarrhea, progressive marasmus (muscle loss), hypotonia (poor muscle tone), photophobia and peripheral edema -- many of these are also zinc deficiency symptoms.
Just my two cents!
Best,
Dan
These are my symptoms too Ocean -- especially the ones I bolded (except no swollen face). I really don't know if you -- or I -- have this copper toxicity problem, but it might be something worth looking into, especially if you have the classic mental symptoms that often go along with it -- like anxiety, the inability to turn off one's thoughts when you're trying to sleep. As mentioned in my previous post, one can apparently be both deficient and toxic at the same time.
I also don't do to well with magnesium. Every test I've done -- various forms, including blood, urine, hair -- my magnesium is always fine. It's the calcium that is usually low.
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Dan, thx for warning all, there is a balance between zinc and copper which must be met. I don;t know anything much about zinc deficiency. However it is more common for women going into menopause or after to be low in copper. It is apparently more common for men to be low in zinc. (But my friend Charlew_w who wrote a book about potassium healing RA says copper deficiency is common in RA and arthritis). In women with high estrogen, zinc deficiency may be a real possiblity. (I am past that so can't test it in myself).
I know a lot about copper because I became deficient recently and there is so much more capability to resreach things on the internet now than there was when things went wrong when I was younger.
To be fair I will say these nice things about zinc:
skin is made of zinc. If you don't get enough your body will make skin with larger pores and/or with stretch marks. There is a lot of skin in your body where this can be relevant: nose (permits rhino virus entry), blood vessels in eyes (leaky), intestines (leaky gut) etc. Taking >75mg zinc can zap a cold (they are now saying it takes at least 75mg to do this).
zinc helps protect against macular degeneration.
Copper and zinc are very important constituents of a vital cellular antioxidant CuZnSOD.
All diabetics are low in zinc (dunno why - I assumed it was due to increased need for antioxidants in diabetes using up the zinc).
It is possibleto be low in copper AND zinc (I suspect diabetics are low in both)
I really dont know much about zinc other than that but it is indeed very important.
The real problem is that copper status is very hard to measure. science does not in fact have any agreement on how to do this and for this reason almost all studies on copper are worthless. Studies which measure copper INPUT and observe results are therefore useful as well as studies in which copper status is obtained via liver biopsy. Alll other studies are worthless as far as saying anything baout copper status. Copper is an acute phase reactant and jumps all over the place based on small things. What Charles_w (on tripod) says is that because it is a poison, during the bubonic plague when over half of the world's population was wiped out (and similar plagues) the people who had more copper in their blood survived as the copper kills the virus, so the body developed a response to anything it thinks could be infection by stripping copper out of tissues (where it is vitally needed) to put it in the blood to kill pathogens and save us all from cholera or plague or other mass-killing disease. (The reason why it is so is speculative of course, but the fact that copper is stripped from other tissues and put in the blood stream for inflammation, infections, medicine use, etc is not). SO those who have viral issues will ALL SHOW HIGH SERUM COPPER. It does not at all mean that you have high copper status. Yu could in fact be in the verge of an aneurism. This is established medical fact, but not all researchers seem to know it and certainly historically they did not.
Since science has not settled on a useful way to measure copper, it also does not know what is a healthful zinc:copper ratio. You can only make surmises based on other things -- like if you have osteoporosis you need a ratio like this of calcium:zinc:copper:manganese (1000:15:5:2.5) per Lowe paper: http://journals.cambridge.org/downl...66a.pdf&code=a16c19704c3854893e3ad43a422129d3
I know a lot about copper because I became deficient recently and there is so much more capability to resreach things on the internet now than there was when things went wrong when I was younger.
To be fair I will say these nice things about zinc:
skin is made of zinc. If you don't get enough your body will make skin with larger pores and/or with stretch marks. There is a lot of skin in your body where this can be relevant: nose (permits rhino virus entry), blood vessels in eyes (leaky), intestines (leaky gut) etc. Taking >75mg zinc can zap a cold (they are now saying it takes at least 75mg to do this).
zinc helps protect against macular degeneration.
Copper and zinc are very important constituents of a vital cellular antioxidant CuZnSOD.
All diabetics are low in zinc (dunno why - I assumed it was due to increased need for antioxidants in diabetes using up the zinc).
It is possibleto be low in copper AND zinc (I suspect diabetics are low in both)
I really dont know much about zinc other than that but it is indeed very important.
The real problem is that copper status is very hard to measure. science does not in fact have any agreement on how to do this and for this reason almost all studies on copper are worthless. Studies which measure copper INPUT and observe results are therefore useful as well as studies in which copper status is obtained via liver biopsy. Alll other studies are worthless as far as saying anything baout copper status. Copper is an acute phase reactant and jumps all over the place based on small things. What Charles_w (on tripod) says is that because it is a poison, during the bubonic plague when over half of the world's population was wiped out (and similar plagues) the people who had more copper in their blood survived as the copper kills the virus, so the body developed a response to anything it thinks could be infection by stripping copper out of tissues (where it is vitally needed) to put it in the blood to kill pathogens and save us all from cholera or plague or other mass-killing disease. (The reason why it is so is speculative of course, but the fact that copper is stripped from other tissues and put in the blood stream for inflammation, infections, medicine use, etc is not). SO those who have viral issues will ALL SHOW HIGH SERUM COPPER. It does not at all mean that you have high copper status. Yu could in fact be in the verge of an aneurism. This is established medical fact, but not all researchers seem to know it and certainly historically they did not.
Since science has not settled on a useful way to measure copper, it also does not know what is a healthful zinc:copper ratio. You can only make surmises based on other things -- like if you have osteoporosis you need a ratio like this of calcium:zinc:copper:manganese (1000:15:5:2.5) per Lowe paper: http://journals.cambridge.org/downl...66a.pdf&code=a16c19704c3854893e3ad43a422129d3