I have had issues with my iron levels for quite a few years.
I have tried several supplements and am on iron liquid ferrous fumurate at the moment but still causing me stomach discomfort. I am trying to increase my doses slowly, currently taking 6ml twice a day, i know its not enough but i cant tolerate the 20ml!!
After feeling increasing ill over the last 4 months, severe fatigue, short of breathe, shaking / tremor, palpatations, tachycardia, nausea and altered feelings and severe muscle spasms and cramps in my legs and arms.
My GP put it down to mental illness , i saw a different Dr and they finally ordered bloods after suggesting its all in my head and my anxiety, which i have had for 16 years,
My recent bloods;
B12 - 140
FOLATE - 2.7
IRON - 4
FERRETIN - 3
HGB - 119
GP has decided to give me 5mg folic acid to take daily for 4 months and ordered loading doses of B12 3 a week for 2 weeks despite neurological symptoms.
I am due to start on Monday however i am extremely worried at the fact i have low ferretin and iron as i have read it can deplete it even more whilst having the b12 loading shots. If thats the case surely i should be admitted to hospital as i would be very ill?!
Help this is so confusing and reading conflicting information.
Also worried about low potassium whilst taking the loading doses
I appreciate we aren't medically trained but any advice and or experience would be greatly appreciated as my GP just disregards everything and i am having severe anxiety about it all to the point i just struggling to cope!
Thanks in advance. x
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mabs79
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From your results it seems likely you have a combination of deficiencies, Iron, B12 and Folate along with a just below range hemoglobin. They are sufficiently low enough to cause many of the symptoms you describe and its an absolute disgrace that your previous GP would tell you its all in your head with figures like these. Some additional iron can be consumed in early B12 treatment but this is unavoidable, you need it to make new red blood cells to replace the poorly formed ones and correct your hemoglobin. Monitor potassium if you can get it checked and eat potassium rich foods to keep levels up. Unless dietary related it sounds like you have serious absorption issues going on so a lot of gut healing needs to happen. Unfortunately, supplementary iron tends to irritate the gut especially in large doses. Some research indicates that, counterintuitively, smaller iron doses on alternate days can raise levels better than very high doses taken daily.
Until your deficiencies get corrected I would not pay attention to any nonsense about your mental health such as "all in your head" - you are seriously ill with vitamin deficiencies that affect the proper function of the brain, the brain does not exist in some splendid lonely isolation unaffected by sicknesses in the body - there are concrete biological reasons for why these deficiences can seriously affect your mood and your brain. Many doctors seem ignorant of this and somehow think problems in the mind can only arise from the mind itself - but its all interconnected - when nutrient absorption goes wrong the mind suffers just as badly as the body and you cannot diagnose/treat problems in the mind without examining whether the mind is getting sufficient nutrients from the body - if its not you can expect serious mental problems to arise until they are corrected.
Good luck and dont let any fool tell you you are imagining it, your blood results tell the story here!
tthank you for that. It's hard to get people to listen to you when all they see iais anxiety rottenritten allover your notes. Don't know what's happening with my text it keeps changing my words 😃. Thanks again.
As Nackapan said : "little doses across the day with vitamin c" for the iron.
mabs79 - at first, my B12 was below range, my folate and ferritin were both low in range and I was found to have osteoporosis so given vitamin D on prescription.
It took quite a while, but all of this gradually improved, even the osteoporosis - most importantly, my symptoms did, too, both mental and physical. It is management, not cure - which is why treatment must continue.
A doctor that misses all the signals presented to them just blocks your access to good health. A supportive GP is essential : so glad that you changed GPs !
ii didn't change GP I can't I was just seen by out of hours GP. I am stuck unless I change drs practice but as I am so I'll at moment I can't be without a GP. I am just confused as thought you can't take vit c while taking b12 as it blocks it? Can I take my iron more often over the day instead of just 2 times.
Do not think B12 is blocked by vitamin c or vice-versa.
I'm not a medical professional. But I have felt like you do now, a lot of us have. Most GPs seem to have little idea of B12 deficiency symptoms beyond tiredness.
Folate and ferritin are often low with B12 deficiency, also vitamin D level worth knowing. It takes a long time to correct and stabilise these levels, but all of this will bring about improvements in the way you feel. It can be difficult to work out all of this without professional help, but you will get to know and understand your own needs once your body is recovering. Initially, you do need tests, monitoring and guidance.
When i was first told I was B12 deficient, I did not even know there was a B12. I also was told that i would need to get 6 injections booked within a month with the nurse. I thought that was going to be that. Injection number 5, I asked the nurse what would happen next (as I felt no better) - that is when I found out this was likely to be for life.
That was six years ago now. There is help to be had here on the forum, support and information. Kindness too - plenty of that.
Some experiments have shown Vitamin C to destroy B12 under specific laboratory conditions. However other experiments have not verified this so it is unclear. In any case this has no conclusive bearing on Vitamin C's effect on B12 in the body. The effects seem to be observed in large supplementary dosages of Vitamin C - e.g. 2 grams. It is much preferable to get Vitamin C from food sources rather than supplementatation. If you are not taking oral B12 none of this has any relevance to you because dietary Vitamin C has no effect on B12 stores, blood serum levels or availability. In fact Vitamin C is critically important to nerve repair if you have neurological damage so rather than avoid it you should make sure your diet has several good Vitamin C food sources to meet or exceed the RDA every day.
"Can I take my iron more often over the day instead of just 2 times. "
This is going to sound strange but research shows that taking large amounts of iron daily does not raise iron levels as effectively as taking lower dosages on alternate days. This is because overloading your body with iron increases hepcidin, which blocks iron absorption - so the more you take, the more inflammation that occurs, the more hepcidin increases and the more iron absorption is reduced. Watch this talk from 30:33 to 36 mins : m.youtube.com/watch?v=pRKII... "Alternate day dosing resulted in 34% greater cumulative iron absorption".
The inflammation from large doses also won't help your gut recover.
you may find some relief in taking iron bisglycinate. I had the same issue with iron and can take this one with no problem. I started something called gentle iron which had the folate and iron with vitamin c in it.
Would your GP consider an iron infusion? Your ferritin is really low. Have you tried floradix or another liquid iron? I'm also deficient in iron, B12 & folate so am supplementing all 3. I tolerate ferrous fumerate luckily, have you tried that?
"GP has decided to give me 5mg folic acid to take daily for 4 months and ordered loading doses of B12 3 a week for 2 weeks despite neurological symptoms."
I'd like to echo what Nackapan has said about starting B12 before the folate.
B12 treatment should be started first as far as I know (I'm not medically trained).
I suggest taking at least a week to work through links below so it's not so overwhelming.
It's possible that some links may have upsetting details.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
iits so energy zapping doing anything right now. My brain isn't functioning properly and I feel weird mist daysdays. Can't control my anxiety or my thoughts just resigned to the fact I will die from this imminently
sshould I take a potassium supplement with the b12b12? Just worried about it dropping but then again I'm worried about taking a supplement then it goes to high! Can't win
Maybe you could ask your GPs advice and talk to your local pharmacist about this.
Some forum members try to eat potassium rich foods such as banana, avocado, beans etc.
I don't take potassium supplements because I know that excess potassium can cause health issues but I do eat bananas and other foods that contain potassium.
I have just found out I am B12 deficient and I have PA.
It WAS very scary until I joined this forum and the PA society.
The support and advice has been AMAZING and I am not scared now thanks to the kindness and generosity and knowledge of the people on this forum (you know who you are 🥰)
I have had 4 of 6 loading doses of B12 and even though they have been spread out over three weeks as I couldn’t tolerate the step change in B12 I feel so much better. At the moment just focus on getting the B12 injections.
My advice as a rookie is:
Get your B12 injections and some sublingual B12 tablets and take one daily under your tongue You cannot overdose on B12 and if you can absorb B12 this should help or B12 liquid if a a single dose is too much and put in your drinking water to sip during the day (a kind person called charks has posted how they take it).
Join the PAS society and call their help line - I did as I was so scared and the lady who called me back was so kind and supportive - it calmed me down and I felt less panicky
Drink keffir - I find it helps calm my stomach and when I take the vitamin supplements GP has prescribed/recommended I can tolerate them better. Build up to full dose I had to do Vit D every 3 rd day at first, then every other day and now each day I find evening best time for me so my body is at rest while being dosed up.
Rest and avoid exertion after a B12 loading injection be prepared for your symptoms to worsen before they begin to improve - it’s your body’s way of saying “yay!” B12 at last!
Avoid alcohol as it makes absorption of B12 via food more difficult
Keep a journal of all your symptoms- you may notice a trend like I did which EMPOWERS you to fight your corner and to slow down the loading doses if necessary
Stay with the GP who found the B12 deficiency- THANK THEM for their vigilance and share the PAS website with them which will expand their knowledge.
I have gone private for a consultation with a consultant in Cambridge who specialises in Anaemia. If you can afford a private consultant it may be worth it and it will support your GP surgery as they are not paying for it.
Keep talking to this group - ask questions - you are amongst friends who are in the same boat and understand how you are feeling.
Finally, remember you are on the road to feeling better and now have the help and support of fellow sufferers and we are virtually holding your hand - you are not alone
ii had to see a different doctor and kept pushing as I knew something wasn't right it took them 6 weeks to test me after saying it was all in my head. No Dr will see me as they all think it's my anxiety. I'm fed up. They won't do anymore tests before my loading doses and have given me 3 shots a week for 2 weeks even though I have neuro and psych symptoms. I am worried about taking supplements that I haven't been prescribed as knowing my luck I will end up overdosing or something. I am just worried about my potassium and iron levels. As my iron is so low (4) and ferretin(4) just worried it will deplete me even more and send me to hospital dying! My potassium has also dropped from4.4 to 3.6 in 3 weeksso worried when I start b12 it will dropeven more. I have stomach issues which I am due for a camera in Wednesday but I start my loading doses on Monday so worried I will not be able to go as I already feel extremely ill and worried that the sedation they give me will cause me to not wake up. My diet is pretty restrictive as following low fodmap for last 6 weeks. Any advise would be great on not freaking out about my iron and potassium levels. My GP is just not interested!!! I'm so scared right now
I've been where you are. I was terrified of hypokalemia and when I lost a lot of my leg strength early in treatment I even called the ER and went to A&E because I was so worried I might collapse, be paralyzed or even die. Embarrassing but true. My potassium turned out to be ok. The problem is few doctors expect or can explain the worsening of symptoms that happen with treatment, and when doctors can't explain it and instead tell you its in your head you begin to worry they're missing something because you know that you're not imagining it.
They expect a magical recovery once B12 levels are corrected. "Once B12 is back in normal range the deficiency is gone".
Of course we know from our own experience and reading many many other accounts that early treatment decline is real and can be very unpleasant and scary. And that recovery from a serious B12 deficiency doesn't take 2 weeks but more like 4-5 months to replace red blood cells and further slow progress over 2 years+ of recovery from neuro symptoms if they were untreated for a long time.
But in all probability you are not at risk of hospitalization for hypokalemia so I would try not to worry about this so much. When you receive the injections you can hang about in the waiting room for 30 mins or so afterwards to make sure of no allergic reaction or effect on potassium. That way if something does happen (which is unlikely), you'll be able to accesss care quickly.
You cannot miss your loading doses, I understand your concern about iron levels but its not an option to continue with low B12 and the symptoms you have, they need urgent treatment to begin to stop the damage and begin the healing process. Without B12 treatment your condition will continue to decline.
There is no significant risk to sublingual tablets between injections, they may not be necessary but are unlikely to cause harm, less additives they contain the better. It is very important to understand that you cannot overdose on B12, dont take my word for it, with some quick research you can easily confirm this - doses thousands of times higher than the injections used to treat B12 deficiency are used to treat cyanide poisoning with no ill effects.
Low FODMAP diet in the restrictive phase should only be followed for max 6 weeks:
Then slowly re-introducing foods and monitoring symptoms. Low B12 (and some of the causes of B12 deficiency) can cause significant stomach issues, with treatment you may find these start to improve too, although it can be slow - consider probiotics, small amounts of fermented foods (sauerkraut, kombucha).
I cannot overemphasise how important a good diet is to your recovery, your body has a lot of repair work to do and you must give it the nutrients it needs to do this. Otherwise getting B12 will be like getting demolition equipment deployed to clear a damaged building but forgetting to bring the scaffolding pipes and cement you'll need to build the new construction. As mentioned, a supermarket multi is a good idea but cannot replace everything you'd get in a good diet.
Your anxiety should also slowly begin to resolve, I know that mine was off the scale in early treatment too, its hard to believe right now but when your B12 and Iron are corrected you're not just going to able to think better, your emotional stability will improve too. I understand you're scared. All I can say is, I've been there and you're going to get through it just like we all have. You are not crazy, you are not alone and things will get better, hard as that may be to believe right now.
ii have fought with my GP for more injections but they are insistent that the neuro and psych symptoms are because of my low iron and anxiety. I just feel overwhelmed by it and can't stop shaking and crying. My brain just isn't working and am scared I will be stuck this way forever. If that's the case then I am pretty sure I would end things as I can't cope. As for supplement will I be ok just to have my shits take my folic acid everyday and my iron then just have a high potassium diet. The supplements are scaring me
Dont take the folic acid until 24 hours after your first loading dose of B12. Keep up with the iron and good potassium sources, along with as good a diet as you can in general. You do not need to be afraid of supplementing B12, you shouldnt need to do so during loading doses but you cannot overdose on B12.
To increase iron absorption add vitamin C at meals like an orange/orange juice, red bell pepper along with some beta-carotene - carrot or carrot juice, sweet potato, and if your stomach recovers, garlic and onion, they all help with iron absorption.
Assess where you are after the loading shots, most likely you will need regular B12 shots for quite a while following but cross that bridge when you get to it.
ook.will remember about the folic acidacid. Thank you for your help. I have sent out for strawberries kiwi raisins coconut water lo salt and baked potatoes hopefully that will help towards my potassium levels and vitamin C aswell as my usual sprouts broccoli and green beans.
i havw nearly got my head round it but the more I read the more it scares me so trying not to aat moment. I still don't feel comfortable about the vitamin b6 and vitamin d I have no idea where my levels are.
My GP will not do any more tests as she has said we know you have low b12 etc so will just treat it. No IFSIFA test IFA test rather or blood smear nothing. Maybe I will never know why I have low b12 and folate and I will have to accept that now.
thank yiu for your help much appreciated. I just have to try and remember that the psychological symptoms are temporary hopefully and even with just 6 shitsshots shits sorry shots bloody text is annoying,that I can get some relief. X
If you havent been taking Vitamin D regularly and based on the UK I would start on 2000IU (25mcg) until you get your levels checked. This is a safe dosage and probably under what you need if you havent been supplementing regularly.
A B-Complex can help but they are very high dose, I would avoid anything with over 25mg B6 ( but be aware that B6 toxicity is rare and requires daily supplementary dosages well in excess of 25mg for months to years). As above, supermarket multi covering RDA is safest until you know if other deficiencies exist and can then adjust accordingly.
On the keyboard issue, this forum software doesnt get on well with auto-correct , you may need to turn off auto-correct in on-screen keyboard settings.
Take a deep breath and try to calm yourself. Read the advice you have been given above again and note the action points.
You are past the worst because you at least now know why you are feeling so rubbish and there is a way to feeling better.
If you drink a small glass or orange with your meal (except if high in dairy) it should help with absorption of vitamins, particularly iron (learnt this from my midwife!) Conversely avoid tea and coffee 30 mins before or after food as it impedes absorption (midwife advice too!). Eat potassium rich foods and lots of fruit and veg and some keffir and you won’t go far wrong. In the timescale of next three months or so this approach should help
There will be ups and downs but you will never be alone now. Deep breath and I suggest some meditation- I found it hard at first - as the saying goes you have to kiss a lot of frogs to find your Prince - but I have now found what works for me. Just “kissing those frogs” will help in itself!
My, my friend. Put it down as mental illness? A few months ago I was having trouble thinking of which word I was about to say. I would say something like The man _ _ _ to the store for some bread. I would snap and wait for the missing word to come to me (drove) in the above sentence. My Vit B12 was 501, 2 weeks ago they did another lab and now it was 418, drastically dropping I'd say. If you are 140, that would frighten me. Not meaning to scare you or anything like that, but how are you still able to be on this forum? Credit to you for sure. I know this much too: back in 2007, I and my wife were diagnosed with low Vit. D. the value here is around 30 for healthy, but under 30 is considered unhealthy. Mine at that time was "11". I was not hospitalized, but I was so tired one night while we were watching TV, that while eating I stopped and my wife asked what was wrong. I told her I was too tired to chew. That's when we knew something was not right. We were tested and immediately prescribed Vitamin D at 50,000 IU (International Units). My Vit. D was 11 and my previous lab test said I had Vit. D of 25, which my Dr. said: "is not too bad, a little under the healthy range". The point of this is that the ranges are only a guide for Dr.'s to go by. If the healthy range is 30, and one person is at 27 and the other is at 33, their conditions are going to be fairly close to the same. Dr.'s are trained for certain things, and we have found they most of them know as much about vitamins as you or I do. Forgive the longwinded response.
Anyway, I'm not in England so not sure if your lab values are the same there, but here anything under 550 is considered low. I've included the Excerpt below from the internet.
Excerpt: Your Vitamin B12 level of 140 is a Low Vitamin B12 level. High levels of Vitamin B12 in the blood indicate a variety of health problems. If your blood Vitamin B12 level is between 211 pg/mL and 911 pg/mL, you probably do not have an underlying health problem.
I'm in a very similar situation to you, my levels are very low. For the best part of the year, I've felt fatigue, muscle aches and pains, weakness, palpitations, dizziness, tachycardia, and also anxiety and depression.I put it down to anxiety until bloods came through and my ferritin was 6, folate 4.1 and b12 300.
I am now taking ferrous fumarate 210mg, however since they upped the dose to 420mg a day, I've been struggling with sickness and stomach pains, so I'm now in the midst of getting iron infusions.
I'm still learning myself so not much advice, and I'm not very knowledgeable on the B12 side of things, they say mine is in range but low end.
Yours is very low, infact all your readings are as you know, so no wonder you feel so unwell.
I think you probably should be on a higher dose, i would go back to GP and express your concerns.
Poor mabs79. I have been where you are and know how frustrating, helpless, and scary it can be. And I worked in the field for over 40 years and was still lost and told I had severe depression. (That didn't come till later, but that is another story) If you have a B12 deficiency due to a malabsorption problem, it is also likely you may not be very efficient at absorbing iron. I tried for over a year taking most every supplement available and none gave me a significant increase in my levels. I would fight for iron infusions as soon as possible. They will most likely help you feel better in a matter of weeks. Supplements may take months, if ever. I used to require 4 - 6 infusions/year, now I am down to 1 or 2. My gastric bleeding has stopped for now and I eat a diet high in iron. Lots of beef, bison, lamb, salmon. I can't say for certain that it helps my iron levels, but it has not hurt my cholesterol levels one bit and it tastes good!
It can be a long, frustrating journey, but keep fighting and you can get where you need to be.
Don’t worry. Your body is like a machine and you simply need to find the RIGHT iron for you. I suggest Iron by Trace Minerals-Amazon- the body recognizes this as food since it is derived from seaweed. Natural. Put a few drops in your food 2x /day. Get No Muscle cramps by the same company. With the B12 shots, you’ll be feeling fine soon.!
I have nothing to add to the advice here from these lovely people except to say you have some very significant deficiencies ( there in black and white in your results) that need treatment and I hope you can manage to find the energy to follow them up and experience improved health. Best wishes, let us know how you get on X
ii have had my first loading dose and feel like I have been hit by a bus. The fatigue is ridiculous and flushing all over my body. I literally feel like my body is made of lead. I'm scared to go to sleep incase I don't wake up my whole body feels awful. Heart is palpatating and feel like I have been hit in the stomach!!? Pls tell me this is normalnormal. And others have experienced severe fatigue after there first loading dose. Or should I be going to the hospital?
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