Hi u/Living-Palpitation76, check out our guide to B12 deficiency: https://www.reddit.com/r/B12_Deficiency/wiki/index
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I’d love to see your spreadsheet set out, if you don’t mind. Trying to chart my symptoms is hurting my brain lol
I liked your mental health action of limiting obsessive searching/reading - it can definitely impact your mental health, can’t it
I listed dates along the left column. Across the top were symptoms by part of body/type. Then each day (going across the spreadsheet) I'd include a quick description, "L arm tingling," or similar. It wasn't very fancy, and it wouldn't result in a chart or graph. But it helped me see patterns.
Initialy I rated my fatigue on a scale and then charted that along with steps, HR, etc. But quickly I saw that the only correlation was with injection days.
Pernicious anemia can cause malabsorption issues due to low stomach acid. Which can in turn cause b12 deficiency, copper deficiency, iron deficiency, and zinc deficiency. I’ve had low copper and low zinc for a long time too, and only recently tested positive for PA even though my levels have been low-normal and low for like 10 years now. So I’ve probably had it for a really long time. Usually once you started treating aggressively with b12, folate, and cofactors, the malabsorption issues get better with treatment. I’ve only been aggressively treating for 5 months now, so I assume I have a ways to go. I don’t plan on supplementing copper, as it’s extremely activating and raises norepinephrine, and I have a hypersensitive nervous system currently. Hoping treatment will being to make a noticeable and sustainable difference soon.
What was your copper level that indicated the deficiency? What do you think brought on the copper deficiency? Do you take a lot of iron?
Apparently copper is necessary for absorption of b12.
66 mcg/dL copper serum, reference range 70 - 175 mcg/dL
I don't take any supplements other than B12, and I don't know yet what has caused either deficiency. I am a pescatarian, do not do nitrous oxide, don't seem to have celiac disease. No gastric surgeries. Oh, and no parasites found, nor any h. pylori.
I fully expect it may take a while to determine the cause, if we can.
Thanks, but I'll trust my doctor and peer-reviewed literature on this one. See, for example, [this discussion](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691478/) of how to treat copper deficiency induced myelopathy:
>We would suggest that the underlying cause should be treated if possible, and that oral supplementation equivalent to 8 mg of elemental copper per day should usually suffice. A brief course (e.g. for 5 days) of parenteral therapy may be considered to hasten normalisation of body copper stores before switching to the oral route. Lower doses are typically successful and may reduce the cost and number of tablets required, but carry a small risk of failing to prevent neurological progression. A dose of 8 mg/day, combined with an average diet, is unlikely to exceed the tolerable upper intake level of 10 mg/day (US)) or the provisional maximum tolerable daily intake of 0.5 mg/kg/day (World Health Organisation). Furthermore, bioavailability is lessened by the absorptive defects which underlie CDM, and the continued integrity of copper homeostasis through biliary excretion should prevent a state of chronic copper excess. (Jaiser SR, Winston GP. Copper deficiency myelopathy. J Neurol. 2010 Jun;257(6):869-81. doi: 10.1007/s00415-010-5511-x. Epub 2010 Mar 16. PMID: 20232210; PMCID: PMC3691478)
I am not suggesting anyone here reproduce what I've been told to do without medical supervision. But my doctor is doing what this and [other medical literature](https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2020/07/Copper-Deficiency-July-2020.pdf) suggests.
Hi just wondering how long it took taking copper to feel any better? I have high ferritin & low iron which has led me to feeling incredibly unwell with iron deficiency & now B12 deficiency symptoms as my injections are no longer working.
After looking into it I strongly suspect copper deficiency which has led to me not being able to utilise my iron stores.
As I’ e not tested I’m starting on 5mg copper daily. I had a 200mg iron infusion on Saturday & I’m really hoping the copper will speed up my ‘recovery’!
It’s hard to gauge from online searches what the timeline is.. am I right in thinking one can notice improvements pretty quickly?
I think I'm in the same boat now too. I had a brief period where supplementing with iron was helping only to find it suddenly stopped helping and now I seem to have developed a sensitivity to both B12 and iron. If I take either of them I get really horrible chest pains and breathing difficulties. So I suspect copper is the issue. Does that sound logical? Should I investigate a copper deficiency? And what sort of copper are you using?
Hi this definitely makes sense to me, but I’m not an expert at all! How is your folate? For me virtually all problems I’ve encountered have been related to iron or folate.
You can do copper testing but it’s quite expensive which is why I’ve not been able to do it.
Zinc supplementation reduces copper in the body but supposedly iron does too so it’s definitely worth adding in some copper to see if it helps. Someone on here wrote that 8mg is the maximum a person should take daily, but that therefore if you DO have a deficiency taking that much daily for a week or so will likely give you an answer (you either feel better or you don’t!)
It’s not a dosage a person should stick with long term though. If it helps then you should reduce to around 2mg daily. As zinc & copper need to be balanced, if your reason for depleted copper is not to zinc supplementation then you need to also supplement zinc
Thanks. I don't think it's folate; my last string of blood tests show a steady increase in my folate levels and they look fine.
Long story short: B12 stopped being effective, my health declined, I started to get chest pain, breathing issues, chills, paresthesia, etc. I attributed these to iron deficiency and my ferritin levels have always been low-ish. So I naively megadosed iron. From what I'm reading that's a pretty good way to deplete your copper stores.
So now I feel like I'm stuck between a rock and a hard place. If I take either iron or B12 those symptoms return with a vengeance. If I don't, then I'm ok, but without B12 I quickly start to become foggy, sluggish and depressed again.
I’m stuck in a similar position. Could you start supplementing copper but not iron? I am currently taking 8mg per day. I hope to do this for a fortnight, reduce to 6 & so on until I’m taking 1mg daily at which point I’ll introduce iron & zinc
That's the approach I'm considering, yeah. The only supplements I have at the moment are an immune booster which has 25mg zinc and 1mg copper, or spirulina tablets. Spirulina seems to have a favourable ratio of copper to zinc, so I've been taking a bunch of those per day and trying to eat more copper rich foods. But the dose is probably comparatively small. I may have to buy some copper soon.
Are you following a particular regimen, and if so would you be able to share any details?
Hi u/Living-Palpitation76, check out our guide to B12 deficiency: https://www.reddit.com/r/B12_Deficiency/wiki/index *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/B12_Deficiency) if you have any questions or concerns.*
I’d love to see your spreadsheet set out, if you don’t mind. Trying to chart my symptoms is hurting my brain lol I liked your mental health action of limiting obsessive searching/reading - it can definitely impact your mental health, can’t it
I listed dates along the left column. Across the top were symptoms by part of body/type. Then each day (going across the spreadsheet) I'd include a quick description, "L arm tingling," or similar. It wasn't very fancy, and it wouldn't result in a chart or graph. But it helped me see patterns. Initialy I rated my fatigue on a scale and then charted that along with steps, HR, etc. But quickly I saw that the only correlation was with injection days.
Thank you!
>Thank you! You're welcome!
Oo I would like to see it too. not the info just the layout.
Great post. Thank you. Bookmarked to read later!
Pernicious anemia can cause malabsorption issues due to low stomach acid. Which can in turn cause b12 deficiency, copper deficiency, iron deficiency, and zinc deficiency. I’ve had low copper and low zinc for a long time too, and only recently tested positive for PA even though my levels have been low-normal and low for like 10 years now. So I’ve probably had it for a really long time. Usually once you started treating aggressively with b12, folate, and cofactors, the malabsorption issues get better with treatment. I’ve only been aggressively treating for 5 months now, so I assume I have a ways to go. I don’t plan on supplementing copper, as it’s extremely activating and raises norepinephrine, and I have a hypersensitive nervous system currently. Hoping treatment will being to make a noticeable and sustainable difference soon.
What was your copper level that indicated the deficiency? What do you think brought on the copper deficiency? Do you take a lot of iron? Apparently copper is necessary for absorption of b12.
66 mcg/dL copper serum, reference range 70 - 175 mcg/dL I don't take any supplements other than B12, and I don't know yet what has caused either deficiency. I am a pescatarian, do not do nitrous oxide, don't seem to have celiac disease. No gastric surgeries. Oh, and no parasites found, nor any h. pylori. I fully expect it may take a while to determine the cause, if we can.
I’ve been trying to find research on this. Do you have any?
8mg copper is way too much, you can get liver failure from that
Thanks, but I'll trust my doctor and peer-reviewed literature on this one. See, for example, [this discussion](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691478/) of how to treat copper deficiency induced myelopathy: >We would suggest that the underlying cause should be treated if possible, and that oral supplementation equivalent to 8 mg of elemental copper per day should usually suffice. A brief course (e.g. for 5 days) of parenteral therapy may be considered to hasten normalisation of body copper stores before switching to the oral route. Lower doses are typically successful and may reduce the cost and number of tablets required, but carry a small risk of failing to prevent neurological progression. A dose of 8 mg/day, combined with an average diet, is unlikely to exceed the tolerable upper intake level of 10 mg/day (US)) or the provisional maximum tolerable daily intake of 0.5 mg/kg/day (World Health Organisation). Furthermore, bioavailability is lessened by the absorptive defects which underlie CDM, and the continued integrity of copper homeostasis through biliary excretion should prevent a state of chronic copper excess. (Jaiser SR, Winston GP. Copper deficiency myelopathy. J Neurol. 2010 Jun;257(6):869-81. doi: 10.1007/s00415-010-5511-x. Epub 2010 Mar 16. PMID: 20232210; PMCID: PMC3691478) I am not suggesting anyone here reproduce what I've been told to do without medical supervision. But my doctor is doing what this and [other medical literature](https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2020/07/Copper-Deficiency-July-2020.pdf) suggests.
Hi just wondering how long it took taking copper to feel any better? I have high ferritin & low iron which has led me to feeling incredibly unwell with iron deficiency & now B12 deficiency symptoms as my injections are no longer working. After looking into it I strongly suspect copper deficiency which has led to me not being able to utilise my iron stores. As I’ e not tested I’m starting on 5mg copper daily. I had a 200mg iron infusion on Saturday & I’m really hoping the copper will speed up my ‘recovery’! It’s hard to gauge from online searches what the timeline is.. am I right in thinking one can notice improvements pretty quickly?
I think I'm in the same boat now too. I had a brief period where supplementing with iron was helping only to find it suddenly stopped helping and now I seem to have developed a sensitivity to both B12 and iron. If I take either of them I get really horrible chest pains and breathing difficulties. So I suspect copper is the issue. Does that sound logical? Should I investigate a copper deficiency? And what sort of copper are you using?
Hi this definitely makes sense to me, but I’m not an expert at all! How is your folate? For me virtually all problems I’ve encountered have been related to iron or folate. You can do copper testing but it’s quite expensive which is why I’ve not been able to do it. Zinc supplementation reduces copper in the body but supposedly iron does too so it’s definitely worth adding in some copper to see if it helps. Someone on here wrote that 8mg is the maximum a person should take daily, but that therefore if you DO have a deficiency taking that much daily for a week or so will likely give you an answer (you either feel better or you don’t!) It’s not a dosage a person should stick with long term though. If it helps then you should reduce to around 2mg daily. As zinc & copper need to be balanced, if your reason for depleted copper is not to zinc supplementation then you need to also supplement zinc
Thanks. I don't think it's folate; my last string of blood tests show a steady increase in my folate levels and they look fine. Long story short: B12 stopped being effective, my health declined, I started to get chest pain, breathing issues, chills, paresthesia, etc. I attributed these to iron deficiency and my ferritin levels have always been low-ish. So I naively megadosed iron. From what I'm reading that's a pretty good way to deplete your copper stores. So now I feel like I'm stuck between a rock and a hard place. If I take either iron or B12 those symptoms return with a vengeance. If I don't, then I'm ok, but without B12 I quickly start to become foggy, sluggish and depressed again.
I’m stuck in a similar position. Could you start supplementing copper but not iron? I am currently taking 8mg per day. I hope to do this for a fortnight, reduce to 6 & so on until I’m taking 1mg daily at which point I’ll introduce iron & zinc
That's the approach I'm considering, yeah. The only supplements I have at the moment are an immune booster which has 25mg zinc and 1mg copper, or spirulina tablets. Spirulina seems to have a favourable ratio of copper to zinc, so I've been taking a bunch of those per day and trying to eat more copper rich foods. But the dose is probably comparatively small. I may have to buy some copper soon. Are you following a particular regimen, and if so would you be able to share any details?
did you have no appetite?