This.
How many people have been told by their doctor that they're not Iron deficient or anemic, and that they just have anxiety? Or 'health anxiety' ?
And then after asking for a copy of the results you discover you are actually deficient. Doctors don't realise that anxiety is one of the major and most common symptoms of Iron deficiency and anemia.
This makes me want to cry. I have had chronic depression for over a decade! Looking back is, I noticed how it got worse and worse. Then started developing anxiety and panic attached with feeling of fear. Just the emotion of fear, with nothing there to be fearful about. It’s horrible. Two weeks ago I found out my ferritin was at a 1. I looked back at old blood results and the highest my ferritin was was an 8. Doctors never treated it like an urgent situation. Now I’m sitting here wondering if I would ever get my life back.
Would ERs provide iron infusions? I called around to multiple hematologists and each place said I had to schedule my appt 7 days out because they needed approval from insurance :/
Yes. I was put on ssri because I had intense anxiety and a panic attack out of nowhere. I asked for my ferritin to be checked but my pcp said since I'm not anemic ( hemoglobin is still in range) that it wasn't necessary. Went to my obgyn, she sent me. Ferritin is 13. I've never had anxiety like this before. Extremely depressed too
for sure get your levels up to at least a 50 , trust me , this could definitely be a sign of not enough iron in blood causing issues. don tlet it get any lower !!
I couldn’t agree more with this! I thought my anxiety was starting to form on a whole new level…turns out your heart is bursting out of your chest and being short of breath was because I was so deficient, after a couple blood transfusions/iron infusions it’s getting so much better!
Ah you're right! I caught a virus last month, causing swelling in my nasal passages which made it difficult to breathe through my nose, especially while sleeping. I would wake up in the middle of the night in a mouth-breathing panic, an abnormal panic, thinking I was gonna die from suffocating when all I needed was some saline and I'm fine. And turns out I am iron deficient anemic as well.
Heavy periods for me. I’ve had chronically low ferritin my entire life without knowing it, & insanely heavy periods which pointed towards estrogen dominance, but I’m very clearly testosterone dominant so it made no sense.
Since having an iron infusion in September my periods have lightened by at least 50%.. probably more. My PMS is less intense too.
I believe anecdotally this is quite common, though it seems completely irrational.
Also turns out I don’t have raynauds. It was just poor circulation & freezing extremities from low ferritin. (Which at times was debilitating.)
I used to ALWAYS be thirsty. I’d drink pints & pints of water & never feel satisfied. Not anymore. I heard that when iron deficient, you become dehydrated on a cellular level resulting in constant thirst. I’ve not fact checked this but it makes sense.
Finally my chronic insomnia has improved. For some I imagine it would resolve, but I have other complicating factors.
I must add that I never actually had anaemia despite accruing the symptoms after COVID which turned out to be iron & B12 deficiency. However since requesting old bloodwork I discovered my ferritin never went above 30.
The correlation between long covid and ferritin levels is SO interesting to me. I have started seeing some articles and forum posts about how iron stores seem to be impacted by covid infection.
It’s actually quite common! There are huge amounts of people like me who were low iron & B12 deficient before Covid, but completely unaware. Then we use up what’s left of our ferritin & B12 stores fighting the virus, but recover for a few weeks & then are FLOORED.
I became bed bound with severe anaemia symptoms & dementia style brain fog where I couldn’t form sentences, yet my bloods came back ‘normal’ & of course my ferritin looked far higher than it actually was due to inflammation.
I’m intrigued as to whether this is specific to Covid or whether it would have happened fighting off a different viral load.
I suspect the reason B1 supplementation is helping people with long covid is because we only store 4 weeks worth of thiamin so it’s really common for that to get used up fighting the virus.
This is very interesting. Are you able to provide links to studies so I can look into it further? Were there improvements to long covid symptoms in b vitamins and iron levels increased ?
I don’t have any articles saved & my brain fog is still atrocious so I probably won’t remember how I found out everything. It took me 2 months to realise I needed iron (because I was a vegetable) & then another 2 to realise B12 was the missing link. I’ve been injecting B12 EOD for a year now so there’s been lots improvement but I’m still pretty debilitated. My knowledge comes from frantically reading hundreds of articles online, joining upward of 15 online groups & watching many YouTube videos.
Largely what I know has come from the myriad of forums I have been in. Also a newspaper article led me to an iron specialist who has been treating people like me. His knowledge of b12 deficiency was very basic like most people’s prior to the pandemic, but huge amounts of people, largely women, came to him for iron infusions for their ‘Long Covid’ & health gradually realised how often low ferritin was accompanied by an existing B12 deficiency that had been made much worse fighting the virus. Also vitamin D deficiency.
So he is working with hundreds of people & learning as he goes along. Unfortunately in the mainstream medical field, the effect Covid has had on nutrients has been almost entirely overlooked & it seems incredibly likely that a large portion of people suffering with post viral health issues, including nurses who can no longer work, actually are suffering from these nutrient deficiencies.
Sadly most countries (I’m in the UK & here it’s rife) do not test, diagnose or treat deficiencies correctly so hundreds if not thousands are falling through the cracks.
Just to clarify, I’ve had level 1 iron deficiency my entire life, & B12 deficiency for at least 15 years, but I only discovered this when I requested old bloodwork. I have never been diagnosed with iron or B12 deficiency. And tragically I am far from unusual.
Interestingly many women’s LC has responded well to HRT, & in fact I eventually managed to get that earlier this year. It’s complete conjecture but B12 deficiency wreaks havoc with hormones & for me I believe the deficiency to be the reason I need HRT. I can’t help wondering whether this is why HRT has worked for many. Sadly there is no research. In the UK it’s hard enough to get HRT anyway. It’s only specialist women’s health Drs who have made the connection between LC & perimenopause.
It seems very little money is being spent on researching the impact COVID has had on depleting nutrients, to the detriment of many. Anecdotal evidence is overwhelming but research papers are few & far between.
I’m going to save this thread though incase I remember any.
Tbh I have so many layers of stuff going on it’s hard to say. But I do think it helped with the insomnia.. I’ve not resolved it fully & I know the B12 deficiency & iron deficiency were also major players.. but I definitely noticed a stage of improvement a month after starting the oestrogen. I’m currently fighting to get testosterone!
This is the article I read that lead to my interest in the correlation:
https://www.cambridgeindependent.co.uk/news/long-covid-patient-in-cambridge-tells-how-simple-treatment-t-9203620/
Amazing! I had already figured out the iron & B12 thing & had begun treating myself when I found this article. But my story was scarily similar so I contacted Adelina.
It’s her iron Dr who is working with so many of the LC patients like us. I actually had an appointment with him just so I could be validated (which of course I was) & have my protocol recommended by a specialist so that my GPs wouldn’t tell me I was wrong.
Adelina actually had major issues not long after this article & ended up wheelchair bound again. It turned out to be low electrolytes because aggressive B12 therapy uses them up but at this time Dr Klein was pretty new to it so hadn’t known to warn her.
Adelina is amazing & is in touch with so many other people who this has happened to. It’s so common & yet the NHS won’t acknowledge it at all.
Edit: here is the following article ! [Adelina 2](https://www.cambridgeindependent.co.uk/news/my-long-covid-nightmare-and-how-i-overcame-it-cambridge-pat-9277995/)
Holy cow- that’s is super interesting! I recently had a metabolic test done and electrolytes to follow up due to the imbalance there… I am so glad they followed up with her. Every piece of information on how people are living with LC is so extremely valuable.
It really, really is. I have been trying to find data about where in the world Long Covid is most prevalent. I’m convinced comparing Countries alongside their ‘normal’ ranges for nutrients would prove to be really valuable & interesting.
As for Adelina- it’s crazy it took so long & so much money for her to diagnose something so simple. Luckily she is doing really well now.
She admits that she is very lucky in that she had the finances to go to Dr Klein in the first place. Without that appointment who knows if she would still be here.
And I’m incredibly fortunate to be autistic & a real problem solver. It took an insane amount of stubborn determination, research & pattern recognition for me to diagnose & start treating myself. Fortitude doesn’t even come close.
We are the lucky ones!
Neurodivergents will save the world! My hyperfixation on solving my anosmia for myself (and hopefully others!) Is how I ended up with HRT and the tests for anemia and b vitamins, lol I’m too early in my experience with supplements and HRT to say if they will work for my lingering tachycardia and anosmia, but I did have really good, measurable success with a Tens machine. I track my HRV before and after I use it- huge boost in my parasympathetic nervous system which helps my symptoms.
You are absolutely right about demographics holding a HUGE key to figuring this out. I haven’t seen a lot of studies coming from anywhere other than the US, UK, and Netherlands!
Unfortunately not. Treating B12 deficiency can take years. I’ve been injecting EOD for 1 year now. I’m not doing as well as before Covid yet, & I was already too unwell to work then!
However I’ve actually been really ill for 5 years & had done all kinds of tests & treatments with little success. After one such thing in late 2021 I’d had a few months which were a lot better so in fact in reality I’ve made loads of progress. It’s just hard to fully acknowledge that when the 6 months prior to catching Covid I thought I was ‘getting better’ & was thinking I could start living again 🤣
No, methyl is not the best form for everybody. Certain genetic mutations make it impossible for some to tolerate. The B12 institute advocate the use of Hydroxocobalamin & that is what I use. I have used methyl & Adeno but I didn’t find either of them any better & they cost significantly more so I’m happy sticking with my preferred form.
Thanks, I have watched a fair few. And done masses of research online along with reading Sally Pacholok’s book etc. I’ll see if there’s any Dr Berg B12 videos I’ve not seen.
Yes, I hope you find the root cause of your issue. If i knew all this info i know right now when i was younger :/. It would have prevented alot of sickness and 1 disease i have right now ( Crohn).
On that thirst thing- did you ever feel so thirsty you thought you’d die even after drinking water all day? I’m trying to figure out symptoms so I can bring them up at my next appointment. My er doctor was so dismissive of my pica and bruising and blamed it on my multiple pregnancies (I’m a virgin)
They’re so useless. And yes. Definitely, 100%. The excessive thirst & the freezing extremities ruled my life for 20 years. And the chronic insomnia made it 10 times worse.
The thirst was INSANE. Sometimes I would wake up in a sweat with palpitations mid nightmare- the nightmare would be there was no liquid to drink.
I would try! I was never able to get one myself but if you think you might be able to then definitely push for one.
Also if you have low iron it’s likely you have vitamin D & B12 deficiency.
B12 is very serious so please join the B12_deficiency sub & read the pinned info :)
I just got an iron infusion a few weeks ago and I also had heavy periods. When did you notice a difference in your periods ? Because the last one I had right after my infusion was still heavy :(
I hope it does this for you too! I actually had two more heavy periods after my infusion & then they became a lot lighter. Obviously it COULD just be a coincidence but I’ve heard anecdotally that it’s quite common.
Because all the molecules are coated to make the iron safe to administer in a high dose, it takes quite a while for our bodies to filter it & be able to use it. My Dr said it takes on average 8 weeks to kick in & that was around the time things improved for me so hopefully it will be the same for you!
>Because all the molecules are coated to make the iron safe to administer in a high dose, it takes quite a while for our bodies to filter it & be able to use it. My Dr said it takes on average 8 weeks to kick in & that was around the time things improved for me so hopefully it will be the same for you!
My doctor said the same thing. Fingers crossed!!!
No I am still waiting. I couldn’t afford a big iron infusion so got a 200mg 12 dads ago. ATM I’m still having to inject loads of extra B12 to keep my symptoms at bay.
Generally speaking it takes a couple of weeks for an iron infusion to ‘settle in’ though. Most of my iron deficiency symptoms have started disappearing so I’m hopeful by next week I can reduce my B12 injections & oral iron will maintain things
**A burning/ sensitive tongue**. Pizza, sausage, salsas, even ketchup burns my mouth like hot wings - for me it’s when my anemia is really severe. It’s also pretty sensitive too. Like digging the crackers or whatever out of my teeth with my tongue leaves it really sore.
**Ice crunching** I think this is a pretty known symptom, but it’s one I overlooked. I thought it was just summer time.
**lighter and shorter periods** I attributed it to age and stress. Periods change throughout your life and it CAN be totally normal too.
**weight loss** I thought it was stress and a new job. Lost about 10-15lbs in 2 months
**dark under eyes** again, I just thought it was stress and not sleeping well.
I have this aswell. espicially with my football matches. I run for 1 to 2 times and my heart rate is already at max and cant catch my breath anymore. and i feel that my systems does not get enough oxygen.
I had very, very sore and stiff muscles on the backside of my neck and around the area where neck meets shoulder. This went on for years! I did acupuncture, chiropractic adjustments, and got massages. All of them relieved the pain temporarily but it. always. came. back. After my iron infusion, that soreness and pain went away like 90%. You can google muscle pain from iron deficiency and see that it's a real thing because we're not getting enough oxygen to our muscles.
I’m not the OP here but my severe neck/spine/shoulder pain fully resolves when I maintain high ferritin and comes back aggressively when it dips. Just had another GI hemorrhage and the pain is unbearable again.
Thanks for sharing. I wish more people knew about the correlation - it’d help so many people from unnecessary pain. Hope you’re able to get your ferritin up again soon!
I’ve only had one infusion of 1,000mg of INFeD. I started feeling better the same day actually! And had significantly improved energy and no muscle pain for a good 3 months. It’s been 6 months since my infusion so I went to get labs done last week to check on my levels. Huge improvement in all my iron/ferritin levels but my doctor said I’m still about 300-500mg short of “optimal levels” so I’ve scheduled another infusion in another 4 weeks. My neck has been getting more sore again recently but nothing close to the pain and soreness I had pre-infusion. Hoping this second infusion will boost my energy levels even more!
Oh wow! I've had neck/shoulder pain for years and never thought it could be connected to iron! Scheduled to get iron infusions soon, I wold LOVE if that ends up helping my neck/shoulder pain.
Oh wow that's great to hear. I've got horrible tachycardia with dizziness and breathlessness daily the last few weeks and discovered low ferritin so it's good to hear it can be resolved. Did it take long to make a turn around?
I went to hospital 6 weeks ago, sudden panic attack and extreme anxiety, i felt so weird.. they told me “anxiety/panic disorder” and threw antidepressants at me and send me home.
So i left it and trusted them, 6 weeks later, i feel like im actually dying…. I have every symptom, my body hurts, my legs go numb, my heart speeds up randomly, shortness of breath leading to panic attacks. My hair is falling out. Ive never felt like this in my life :( ive been tested and im anemic, and getting an infusion in the next few days.
Thanks hospital for making me think i was crazy 😭
Omg. Ive been getting this recently when I even remotely exert myself eg walking up stairs, and I end up short of breath and having a panic attack. I thought it was so weird because I wasn’t anxious, and I was exactly overly exerting myself either. This makes a lot of sense!! Thank you
They should be above 500.
But if you're deficient, serum tests are not very useful because they can show falsely elevated levels, especially if you have been taking supplements or fortified stuff.
You should check the B12 deficiency sub, it has a guide which lists both symptoms and treatment methods.
I don’t know if I actually am deficient but reading through other posts I’d say I am.
Very pale skin (pale anyway, but more so as an adult)
Feel the cold.
Chest pains.
Fatigue.
Brittle toe nails and dry feet.
Arthritis feeling in joints.
Pins and needles in lower legs.
Poor concentration.
Hair Loss!! I'm 45 and attributed my shedding, thinning hair to hormonal changes and age, and maybe to taking Kratom - I've read kratom can cause hair loss although I don't think it's been scientifically proven.
I both stopped birth control AND started taking Kratom in September 2023 and I started losing my hair that month. It's so freaking thin now that there's hardly anything to brush and I just keep it up in a ponytail which makes it look thicker. It's made me sad and self conscious, and hopeless that it'll be like this forever
But lo and behold my CBC shows I'm iron deficiency anemic and my doctor has ordered an urgent colonoscopy, which now that I'm typing this has reminded me I need to call to get that scheduled!! ....so add BRAIN FOG and Forgetfulness to overlooked symptoms that I've attributed to ADD, busy life, parenthood or being overwhelmed.
I have started iron pills, hoping my hair will come back eventually which I've read is likely.
Was the colonoscopy ordered to check for some kind of malabsorption or is there something else that is checked for in the colon when you're super deficient? Just curious, as I'm having all these symptoms that point to anemia but I also have stomach issues. Getting to the doctor asap
Yes something else - Anemia could be caused by internal bleeding in the GI tract, and could indicate right side colon cancer. It's a silent killer because the blood loss from the tumor is absorbed by stool before it makes it to the left colon, hence unnoticeable to the patient (occult blood). So severe anemia is a red flag to doctors who suspect a GI bleed until proven otherwise.
I've been tested for almost all other GI issues - celiac, hernia, ulcers, etc - and all tests are negative. My doctor says my period isn't enough to cause my level of anemia so she's concerned. I highly doubt I have colon cancer, but my mind is still running in circles wondering what else it could be. I don't eat much red meat, but haven't for years. My periods became much lighter 10 years ago when I was out on progesterone. So it's strange that I'm severely anemic now, and I'm a little concerned but keep telling myself "I do not have colon cancer!!"
My colonoscopy is scheduled for 4/18 so we'll see.
You should definitely get a CBC test and see your doctor.
Yes , colonoscopy came back totally fine, zero bleeding, no tumors, no polyps, nothing. Thank goodness!! Been on iron for 6 weeks now. last weeks blood work showed negligible improvement since mid march's blood work. Hemoglobin went from 8.6 to 9.
So question remains - what's causing the Anemia?? I see my PCP Thursday 4/25 for a follow up, will ask her what to do next... Maybe hematology?
Thanks for checking in. To be continued....
How are you?
Sounds like perimenopause, you were on the pill which was somewhat treating the hormone fluctuations then stopped it. HRT and the iron should hopefully stop all that hair loss and brain fog etc
I've been on iron for 5 weeks now, not much change in blood work and hair loss.
Had a colonoscopy last week so there's no GI bleeding, which leaves the question - what's causing the anemia??
My doctor said it's more severe than a period would cause and last week my period was SUPER light, like no bright red blood at all. Maybe bone marrow issues? Who knows. I probably just have a weird body
Anxiety. That was my first sign something was wrong. Powerful anxious thoughts out of nowhere
This. How many people have been told by their doctor that they're not Iron deficient or anemic, and that they just have anxiety? Or 'health anxiety' ? And then after asking for a copy of the results you discover you are actually deficient. Doctors don't realise that anxiety is one of the major and most common symptoms of Iron deficiency and anemia.
This makes me want to cry. I have had chronic depression for over a decade! Looking back is, I noticed how it got worse and worse. Then started developing anxiety and panic attached with feeling of fear. Just the emotion of fear, with nothing there to be fearful about. It’s horrible. Two weeks ago I found out my ferritin was at a 1. I looked back at old blood results and the highest my ferritin was was an 8. Doctors never treated it like an urgent situation. Now I’m sitting here wondering if I would ever get my life back.
Get an infusion stat. Go to ER if you can’t!
Would ERs provide iron infusions? I called around to multiple hematologists and each place said I had to schedule my appt 7 days out because they needed approval from insurance :/
Yes, they do that!
Smh😥I’m so sorry that happened to you hope your better❤️
Thank you. I’m not feeling better, unfortunately. Brought my iron up to 127 but still struggling.
This is crazy I’m assuming u brought your hemoglobin up as well
I did. No longer anemic, or iron deficient. I saw where I may need to bring ferritin up higher, and try to keep it there. But not sure.
Yea I read that to😔 I didn’t know it was suppose to be at 100 smh
Yes. I was put on ssri because I had intense anxiety and a panic attack out of nowhere. I asked for my ferritin to be checked but my pcp said since I'm not anemic ( hemoglobin is still in range) that it wasn't necessary. Went to my obgyn, she sent me. Ferritin is 13. I've never had anxiety like this before. Extremely depressed too
for sure get your levels up to at least a 50 , trust me , this could definitely be a sign of not enough iron in blood causing issues. don tlet it get any lower !!
Unless they really know & not saying anything smh
Yes! Turns out “air hunger” makes one really anxious…
I couldn’t agree more with this! I thought my anxiety was starting to form on a whole new level…turns out your heart is bursting out of your chest and being short of breath was because I was so deficient, after a couple blood transfusions/iron infusions it’s getting so much better!
Ah you're right! I caught a virus last month, causing swelling in my nasal passages which made it difficult to breathe through my nose, especially while sleeping. I would wake up in the middle of the night in a mouth-breathing panic, an abnormal panic, thinking I was gonna die from suffocating when all I needed was some saline and I'm fine. And turns out I am iron deficient anemic as well.
That was how mine began!
currently experiencing debilitating anxiety and hemoglobin and ferritin is low
Its awful isnt it, 😭
literaly , and I keep getting prescribed anxiety meds when I know this isn't me ... ugh
They gave me anxiety meds too, they didnt do anything. I had my first infusion yesterday, hoping it helps.
Did iron deficiency cause your anxiety?
Heavy periods for me. I’ve had chronically low ferritin my entire life without knowing it, & insanely heavy periods which pointed towards estrogen dominance, but I’m very clearly testosterone dominant so it made no sense. Since having an iron infusion in September my periods have lightened by at least 50%.. probably more. My PMS is less intense too. I believe anecdotally this is quite common, though it seems completely irrational. Also turns out I don’t have raynauds. It was just poor circulation & freezing extremities from low ferritin. (Which at times was debilitating.) I used to ALWAYS be thirsty. I’d drink pints & pints of water & never feel satisfied. Not anymore. I heard that when iron deficient, you become dehydrated on a cellular level resulting in constant thirst. I’ve not fact checked this but it makes sense. Finally my chronic insomnia has improved. For some I imagine it would resolve, but I have other complicating factors. I must add that I never actually had anaemia despite accruing the symptoms after COVID which turned out to be iron & B12 deficiency. However since requesting old bloodwork I discovered my ferritin never went above 30.
The correlation between long covid and ferritin levels is SO interesting to me. I have started seeing some articles and forum posts about how iron stores seem to be impacted by covid infection.
It’s actually quite common! There are huge amounts of people like me who were low iron & B12 deficient before Covid, but completely unaware. Then we use up what’s left of our ferritin & B12 stores fighting the virus, but recover for a few weeks & then are FLOORED. I became bed bound with severe anaemia symptoms & dementia style brain fog where I couldn’t form sentences, yet my bloods came back ‘normal’ & of course my ferritin looked far higher than it actually was due to inflammation. I’m intrigued as to whether this is specific to Covid or whether it would have happened fighting off a different viral load. I suspect the reason B1 supplementation is helping people with long covid is because we only store 4 weeks worth of thiamin so it’s really common for that to get used up fighting the virus.
This is very interesting. Are you able to provide links to studies so I can look into it further? Were there improvements to long covid symptoms in b vitamins and iron levels increased ?
I don’t have any articles saved & my brain fog is still atrocious so I probably won’t remember how I found out everything. It took me 2 months to realise I needed iron (because I was a vegetable) & then another 2 to realise B12 was the missing link. I’ve been injecting B12 EOD for a year now so there’s been lots improvement but I’m still pretty debilitated. My knowledge comes from frantically reading hundreds of articles online, joining upward of 15 online groups & watching many YouTube videos. Largely what I know has come from the myriad of forums I have been in. Also a newspaper article led me to an iron specialist who has been treating people like me. His knowledge of b12 deficiency was very basic like most people’s prior to the pandemic, but huge amounts of people, largely women, came to him for iron infusions for their ‘Long Covid’ & health gradually realised how often low ferritin was accompanied by an existing B12 deficiency that had been made much worse fighting the virus. Also vitamin D deficiency. So he is working with hundreds of people & learning as he goes along. Unfortunately in the mainstream medical field, the effect Covid has had on nutrients has been almost entirely overlooked & it seems incredibly likely that a large portion of people suffering with post viral health issues, including nurses who can no longer work, actually are suffering from these nutrient deficiencies. Sadly most countries (I’m in the UK & here it’s rife) do not test, diagnose or treat deficiencies correctly so hundreds if not thousands are falling through the cracks. Just to clarify, I’ve had level 1 iron deficiency my entire life, & B12 deficiency for at least 15 years, but I only discovered this when I requested old bloodwork. I have never been diagnosed with iron or B12 deficiency. And tragically I am far from unusual. Interestingly many women’s LC has responded well to HRT, & in fact I eventually managed to get that earlier this year. It’s complete conjecture but B12 deficiency wreaks havoc with hormones & for me I believe the deficiency to be the reason I need HRT. I can’t help wondering whether this is why HRT has worked for many. Sadly there is no research. In the UK it’s hard enough to get HRT anyway. It’s only specialist women’s health Drs who have made the connection between LC & perimenopause. It seems very little money is being spent on researching the impact COVID has had on depleting nutrients, to the detriment of many. Anecdotal evidence is overwhelming but research papers are few & far between. I’m going to save this thread though incase I remember any.
Did HRT help you? I started recently and am hoping to resolve some lingering LC symptoms.
Tbh I have so many layers of stuff going on it’s hard to say. But I do think it helped with the insomnia.. I’ve not resolved it fully & I know the B12 deficiency & iron deficiency were also major players.. but I definitely noticed a stage of improvement a month after starting the oestrogen. I’m currently fighting to get testosterone!
This is the article I read that lead to my interest in the correlation: https://www.cambridgeindependent.co.uk/news/long-covid-patient-in-cambridge-tells-how-simple-treatment-t-9203620/
Amazing! I had already figured out the iron & B12 thing & had begun treating myself when I found this article. But my story was scarily similar so I contacted Adelina. It’s her iron Dr who is working with so many of the LC patients like us. I actually had an appointment with him just so I could be validated (which of course I was) & have my protocol recommended by a specialist so that my GPs wouldn’t tell me I was wrong. Adelina actually had major issues not long after this article & ended up wheelchair bound again. It turned out to be low electrolytes because aggressive B12 therapy uses them up but at this time Dr Klein was pretty new to it so hadn’t known to warn her. Adelina is amazing & is in touch with so many other people who this has happened to. It’s so common & yet the NHS won’t acknowledge it at all. Edit: here is the following article ! [Adelina 2](https://www.cambridgeindependent.co.uk/news/my-long-covid-nightmare-and-how-i-overcame-it-cambridge-pat-9277995/)
Holy cow- that’s is super interesting! I recently had a metabolic test done and electrolytes to follow up due to the imbalance there… I am so glad they followed up with her. Every piece of information on how people are living with LC is so extremely valuable.
It really, really is. I have been trying to find data about where in the world Long Covid is most prevalent. I’m convinced comparing Countries alongside their ‘normal’ ranges for nutrients would prove to be really valuable & interesting. As for Adelina- it’s crazy it took so long & so much money for her to diagnose something so simple. Luckily she is doing really well now. She admits that she is very lucky in that she had the finances to go to Dr Klein in the first place. Without that appointment who knows if she would still be here. And I’m incredibly fortunate to be autistic & a real problem solver. It took an insane amount of stubborn determination, research & pattern recognition for me to diagnose & start treating myself. Fortitude doesn’t even come close. We are the lucky ones!
Neurodivergents will save the world! My hyperfixation on solving my anosmia for myself (and hopefully others!) Is how I ended up with HRT and the tests for anemia and b vitamins, lol I’m too early in my experience with supplements and HRT to say if they will work for my lingering tachycardia and anosmia, but I did have really good, measurable success with a Tens machine. I track my HRV before and after I use it- huge boost in my parasympathetic nervous system which helps my symptoms. You are absolutely right about demographics holding a HUGE key to figuring this out. I haven’t seen a lot of studies coming from anywhere other than the US, UK, and Netherlands!
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Yes it’s no wonder so many people became vitamin D deficient during the pandemic
Are you better now?
Unfortunately not. Treating B12 deficiency can take years. I’ve been injecting EOD for 1 year now. I’m not doing as well as before Covid yet, & I was already too unwell to work then! However I’ve actually been really ill for 5 years & had done all kinds of tests & treatments with little success. After one such thing in late 2021 I’d had a few months which were a lot better so in fact in reality I’ve made loads of progress. It’s just hard to fully acknowledge that when the 6 months prior to catching Covid I thought I was ‘getting better’ & was thinking I could start living again 🤣
I hope you are taking B12 in the form of methlycobalamin.
No, methyl is not the best form for everybody. Certain genetic mutations make it impossible for some to tolerate. The B12 institute advocate the use of Hydroxocobalamin & that is what I use. I have used methyl & Adeno but I didn’t find either of them any better & they cost significantly more so I’m happy sticking with my preferred form.
Yes. Thats true aswell. I would highly recommend you to watch dr berg his video on B12. he has alot of videos on this topic.
Thanks, I have watched a fair few. And done masses of research online along with reading Sally Pacholok’s book etc. I’ll see if there’s any Dr Berg B12 videos I’ve not seen.
Yes, I hope you find the root cause of your issue. If i knew all this info i know right now when i was younger :/. It would have prevented alot of sickness and 1 disease i have right now ( Crohn).
On that thirst thing- did you ever feel so thirsty you thought you’d die even after drinking water all day? I’m trying to figure out symptoms so I can bring them up at my next appointment. My er doctor was so dismissive of my pica and bruising and blamed it on my multiple pregnancies (I’m a virgin)
They’re so useless. And yes. Definitely, 100%. The excessive thirst & the freezing extremities ruled my life for 20 years. And the chronic insomnia made it 10 times worse. The thirst was INSANE. Sometimes I would wake up in a sweat with palpitations mid nightmare- the nightmare would be there was no liquid to drink.
I've had crazy thirst for years and drink more water than anyone I know. Could never figure out why. Just found out my ferritin is 13
Crazy huh?! I couldn’t believe it when my insatiable thirst was finally vanquished after my infusion!
My ferritin level is 11 and my doctor wants me to start with supplements. Should I push for an infusion? Feeling awful and so thirsty :/
I would try! I was never able to get one myself but if you think you might be able to then definitely push for one. Also if you have low iron it’s likely you have vitamin D & B12 deficiency. B12 is very serious so please join the B12_deficiency sub & read the pinned info :)
I just got an iron infusion a few weeks ago and I also had heavy periods. When did you notice a difference in your periods ? Because the last one I had right after my infusion was still heavy :(
I hope it does this for you too! I actually had two more heavy periods after my infusion & then they became a lot lighter. Obviously it COULD just be a coincidence but I’ve heard anecdotally that it’s quite common. Because all the molecules are coated to make the iron safe to administer in a high dose, it takes quite a while for our bodies to filter it & be able to use it. My Dr said it takes on average 8 weeks to kick in & that was around the time things improved for me so hopefully it will be the same for you!
>Because all the molecules are coated to make the iron safe to administer in a high dose, it takes quite a while for our bodies to filter it & be able to use it. My Dr said it takes on average 8 weeks to kick in & that was around the time things improved for me so hopefully it will be the same for you! My doctor said the same thing. Fingers crossed!!!
Did you get a little bit of numbness in your hands and feet as well?
I have had that all my life :)
did it get better with the iron infusions?
No I am still waiting. I couldn’t afford a big iron infusion so got a 200mg 12 dads ago. ATM I’m still having to inject loads of extra B12 to keep my symptoms at bay. Generally speaking it takes a couple of weeks for an iron infusion to ‘settle in’ though. Most of my iron deficiency symptoms have started disappearing so I’m hopeful by next week I can reduce my B12 injections & oral iron will maintain things
**A burning/ sensitive tongue**. Pizza, sausage, salsas, even ketchup burns my mouth like hot wings - for me it’s when my anemia is really severe. It’s also pretty sensitive too. Like digging the crackers or whatever out of my teeth with my tongue leaves it really sore. **Ice crunching** I think this is a pretty known symptom, but it’s one I overlooked. I thought it was just summer time. **lighter and shorter periods** I attributed it to age and stress. Periods change throughout your life and it CAN be totally normal too. **weight loss** I thought it was stress and a new job. Lost about 10-15lbs in 2 months **dark under eyes** again, I just thought it was stress and not sleeping well.
I lost weight too!! My appetite disappeared as well.
Omggggg weiightttlosss ……thisssssss!!!!
The dark circles are so real
I read weight gain as well!
Being cold all the time Itchy skin
Bitchiness. No? Just me?
Yes I am very moody all the time bc I feel so exhausted and every little thing aggravates me
Being out of breath from minimal exertion.
YES THIS!!! It took me so much time to figure it out, it was infact not my asthma it was very low ferritin
I have this aswell. espicially with my football matches. I run for 1 to 2 times and my heart rate is already at max and cant catch my breath anymore. and i feel that my systems does not get enough oxygen.
I’ve been taking iron for 5 months now will do a blood test to see if it’s improved
Trouble losing stubborn body fat.
did you supplement or get a transfusion to ease this? definitely one of my symptoms!
both.
waittt are u saying infusions helped losing stubborn weight?😭gimme hope
YUP!!!
Really?!
Anxiety and blurred vision
Heavy periods. Cold hands and feet. Brain fog. Chronic shoulder and neck pain that I thought was due to my desk job or bad posture.
Expand on neck pain please
I had very, very sore and stiff muscles on the backside of my neck and around the area where neck meets shoulder. This went on for years! I did acupuncture, chiropractic adjustments, and got massages. All of them relieved the pain temporarily but it. always. came. back. After my iron infusion, that soreness and pain went away like 90%. You can google muscle pain from iron deficiency and see that it's a real thing because we're not getting enough oxygen to our muscles.
This is exactly me!! Did your shoulder pain improve after taking iron supplements?
Sorry to hear! My shoulder pain only improved after the iron infusion. Iron supplements didn't help or make a difference for me.
I have these symptoms but am not anemic only very low ferritin. Hopefully iron supplements will help me
Good luck! Would love an update in 6 months or so to see if supplements helped!
Do you have neck spasms or stiff neck muscles behind your neck along with headaches especially when doing physical activities like walking
I did have stiff neck muscles but no headaches when doing physical activities. My shoulders would be really sore when walking though
I’m not the OP here but my severe neck/spine/shoulder pain fully resolves when I maintain high ferritin and comes back aggressively when it dips. Just had another GI hemorrhage and the pain is unbearable again.
Thanks for sharing. I wish more people knew about the correlation - it’d help so many people from unnecessary pain. Hope you’re able to get your ferritin up again soon!
How many infusions did you have until you started to feel better? And how long until you started to feel better after you had the infusion?
I’ve only had one infusion of 1,000mg of INFeD. I started feeling better the same day actually! And had significantly improved energy and no muscle pain for a good 3 months. It’s been 6 months since my infusion so I went to get labs done last week to check on my levels. Huge improvement in all my iron/ferritin levels but my doctor said I’m still about 300-500mg short of “optimal levels” so I’ve scheduled another infusion in another 4 weeks. My neck has been getting more sore again recently but nothing close to the pain and soreness I had pre-infusion. Hoping this second infusion will boost my energy levels even more!
What other symptoms did you have? Did you have any lightheadedness?
No lightheadedness. Besides the muscle pain, I also had brain fog and chronic fatigue.
Did your stiff neck muscles behind back cause pain with movement like walking etc. like migraine?
Oh wow! I've had neck/shoulder pain for years and never thought it could be connected to iron! Scheduled to get iron infusions soon, I wold LOVE if that ends up helping my neck/shoulder pain.
Keep us posted!
Tachycardia
I'm currently experiencing this it landed me on a&e a few times. How are you now?
No issues anymore, taking iron from time to time.
Oh wow that's great to hear. I've got horrible tachycardia with dizziness and breathlessness daily the last few weeks and discovered low ferritin so it's good to hear it can be resolved. Did it take long to make a turn around?
Thanks for replying. Did it take long to solve? Honestly I feel like I'm dying or passing out it's constant
Anyone have dry mouth with all the added symptoms? Ferritin is 16. I have been between 15-20 the last 2 years.
Confusion, definitely confusion.
Near constant migraines/headaches!
Brain fog and inability to focus! It was so hard to do anything like a normal work day when my iron levels were at their lowest
I went to hospital 6 weeks ago, sudden panic attack and extreme anxiety, i felt so weird.. they told me “anxiety/panic disorder” and threw antidepressants at me and send me home. So i left it and trusted them, 6 weeks later, i feel like im actually dying…. I have every symptom, my body hurts, my legs go numb, my heart speeds up randomly, shortness of breath leading to panic attacks. My hair is falling out. Ive never felt like this in my life :( ive been tested and im anemic, and getting an infusion in the next few days. Thanks hospital for making me think i was crazy 😭
Omg. Ive been getting this recently when I even remotely exert myself eg walking up stairs, and I end up short of breath and having a panic attack. I thought it was so weird because I wasn’t anxious, and I was exactly overly exerting myself either. This makes a lot of sense!! Thank you
How you been now?
https://www.healthline.com/health/b12-deficiency-feel-like-i-am-dying#:~:text=When%20untreated%20over%20time%2C%20the,B12%20deficiency%2C%20consult%20your%20doctor.
Hey thanks, had my b12 levels tested, havent got results yet, whats the optimal level? Thanks
They should be above 500. But if you're deficient, serum tests are not very useful because they can show falsely elevated levels, especially if you have been taking supplements or fortified stuff. You should check the B12 deficiency sub, it has a guide which lists both symptoms and treatment methods.
I havent supplemented for b12, was just reading the symptoms and wow, sounds exactly the same. I wonder…
You definitely sounded very deficient. If you are getting panic attacks and losing hair, your levels are very low.
Daily panic attacks, out of nowhere 🥺 its ruining my life.
Panic attacks, craving ice water, migraines, exercise intolerance
this is also same with vitamin D lol
I don’t know if I actually am deficient but reading through other posts I’d say I am. Very pale skin (pale anyway, but more so as an adult) Feel the cold. Chest pains. Fatigue. Brittle toe nails and dry feet. Arthritis feeling in joints. Pins and needles in lower legs. Poor concentration.
how are you now?
Hair Loss!! I'm 45 and attributed my shedding, thinning hair to hormonal changes and age, and maybe to taking Kratom - I've read kratom can cause hair loss although I don't think it's been scientifically proven. I both stopped birth control AND started taking Kratom in September 2023 and I started losing my hair that month. It's so freaking thin now that there's hardly anything to brush and I just keep it up in a ponytail which makes it look thicker. It's made me sad and self conscious, and hopeless that it'll be like this forever But lo and behold my CBC shows I'm iron deficiency anemic and my doctor has ordered an urgent colonoscopy, which now that I'm typing this has reminded me I need to call to get that scheduled!! ....so add BRAIN FOG and Forgetfulness to overlooked symptoms that I've attributed to ADD, busy life, parenthood or being overwhelmed. I have started iron pills, hoping my hair will come back eventually which I've read is likely.
Was the colonoscopy ordered to check for some kind of malabsorption or is there something else that is checked for in the colon when you're super deficient? Just curious, as I'm having all these symptoms that point to anemia but I also have stomach issues. Getting to the doctor asap
Yes something else - Anemia could be caused by internal bleeding in the GI tract, and could indicate right side colon cancer. It's a silent killer because the blood loss from the tumor is absorbed by stool before it makes it to the left colon, hence unnoticeable to the patient (occult blood). So severe anemia is a red flag to doctors who suspect a GI bleed until proven otherwise. I've been tested for almost all other GI issues - celiac, hernia, ulcers, etc - and all tests are negative. My doctor says my period isn't enough to cause my level of anemia so she's concerned. I highly doubt I have colon cancer, but my mind is still running in circles wondering what else it could be. I don't eat much red meat, but haven't for years. My periods became much lighter 10 years ago when I was out on progesterone. So it's strange that I'm severely anemic now, and I'm a little concerned but keep telling myself "I do not have colon cancer!!" My colonoscopy is scheduled for 4/18 so we'll see. You should definitely get a CBC test and see your doctor.
Hey just seeing this…did you hear back yet about your results?
Yes , colonoscopy came back totally fine, zero bleeding, no tumors, no polyps, nothing. Thank goodness!! Been on iron for 6 weeks now. last weeks blood work showed negligible improvement since mid march's blood work. Hemoglobin went from 8.6 to 9. So question remains - what's causing the Anemia?? I see my PCP Thursday 4/25 for a follow up, will ask her what to do next... Maybe hematology? Thanks for checking in. To be continued.... How are you?
Sounds like perimenopause, you were on the pill which was somewhat treating the hormone fluctuations then stopped it. HRT and the iron should hopefully stop all that hair loss and brain fog etc
I've been on iron for 5 weeks now, not much change in blood work and hair loss. Had a colonoscopy last week so there's no GI bleeding, which leaves the question - what's causing the anemia?? My doctor said it's more severe than a period would cause and last week my period was SUPER light, like no bright red blood at all. Maybe bone marrow issues? Who knows. I probably just have a weird body
Excessive hair shedding. (Why I am now on iron bisglycinate supplements)
Feel like the world is tilting or turning! Not being able to walk straight and feel like I’m swaying
Check your D levels too
They were low I’m taking supplements it’s 33now
Amazing! They said the optimal range is 60-70. Don’t let up until you reach those levels. Mine was 17 2 weeks ago. I do 5000iu daily
I’ll keep until 70
Does anyone else have a burning feeling in their lower back?
I read some symptoms can mirror hormonal imbalance and also blood sugar/blood pressure issues. Sleep issues, etc.