I'm a new member. I have not been diagnosed with any type of anaemia but I've recently had some bloods done and they have shown low B12 and Iron.
Quick background.
I'm a 50yo female and have always suffered from low iron levels. I also suffer from ectopic heartbeats. I've had loads of tests and they've come back normal, it's just one of my quirks.
A few weeks ago I had an awful run of ectopic beats. It was very unusual for me. Over the years, I've learned what is "my normal" and this was not. They ran consecutively and went on for 6 hours. Contacted the doctors and they arranged some bloods and a 7 day Holter monitor.
Bloods came back with low B12 (141) and ferritin (7) so I've been on iron supplements for two weeks and been prescribed a loading dose of b12 injections. By the time I start my B12's it will have been a month since the results came through. The iron hasn't really started to have an effect yet and I am really hoping the B12 will pick me up as I feel pretty rotten right now. I'll have my IF bloods taken the first day of the injections so will hopefully have a better plan going forward.
No idea why I felt the need to tell anyone this but I've read loads of really useful information on this site so thought I'd share my story.
Thanks!
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GinnyMcGinFace
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I had full bloodwork done and folate was within range (3.7). My Vitamin D is probably low too. I had a skin cancer scare about 2 years ago and am now always fully covered and its factor 50 all year round. I have no idea about symptoms of vitamin d deficiency. I'm off to google that
Your right, your folate is in range but at 4% into the range it is very close to being deficient. Some people would suggest supplementing with methyl folate, there is also a view that it is safest to delay the folate supplement until the b12 loading doses have started. This later point is debated but if you Google it you can see the discussion.
I also strongly recommend a symptoms diary. It took me too many months to start realising that I had been getting neurological symptoms for years (and was still getting them as my prescribed B12 treatment was insufficient) just not recognising them as such. Once the brain fog, anxiety and information overload start to settle down you will be able to look back and recognise some patterns.eg I would often get occipital neuralgia towards the end of a longish walk... because I was using up so much energy (B12) exercising and my nerves were pinging in protest. I needed more frequent doses to heal the nerves. Take care and stay connected. We need each other on this journey.
I would say, exhaustion, depression and anxiety, unusual palpitations, hair thinning, had one single vision issue that google said was a visual migraine. It’s so hard to pin down as those are also symptoms related to the menopause. The anxiety is what has caused me the biggest issue
Anxiety is common with B12 deficiency- often put down to peri/menopause. I developed really bad brain fog and anxiety/depression - it felt like all the colour and joy had gone and everything was just hard work! Turned out to be B12 deficiency- took a few months of EOD to go entirely. Good luck.
This sounds awful! I agree, its so easy to call everything the menopause. I've been on HRT for 18 months now. A colleague recommended it and, initially, it was honestly a game changer for me. I felt better within a week. After 6 months we upped my dose a little and that helped with the symptoms. If I didn't have the palpitations the doc would have probably changed my HRT but in fairness, menopause hasn't been mentioned. Injections start next week, so fingers crossed
My symptoms mirror yours and yes they did become more noticeable with the menopause- especially ectopic heart beats - 6,000 on a 24hr holter. I had had episodes of severe depression all my life and it was unbelievable how b12 injections reduced it. I was shocked when the effects of the b12 cleared the depression within hours. It’s an issue that has blighted my family and to think that all that can be due an inherited metabolic defect is astounding, I felt very emotional to say the least.
None the less it’s useful to have other causes ruled out with testing but your b12 and folate results are really low and do point to a deficiency.
I was offered antidepressants and beta blockers so many times. I’d love to have a follow up with the cardiologist I saw and explain how his diagnosis was so wrong, but i don’t suppose he would be interested.
If b12 injections work for you keep them up and don’t let any doctor try to tell you that you’re ok now because your blood levels improve. Treating yourself is often the only sensible way forward. 🙂
hello, I have exactly the same symptoms as you, including the ectopic beats. My hair is falling out, anxiety, brain fog etc, also in perimenopause. Also very low in iron, b12 etc. What did the holter results say? Do you have inflamed stomach/digestive issues? I’m trying to supplement but doc won’t give b12 jabs so I’m prescribed oral b12. Are you vegetarian/vegan? Good luck, stay in touch, you’re not alone in this!
Hi. The holter monitor went back yesterday and results should be back in about 10 days. Tummy is rough. I seem to have become intolerant to alcohol. It gives me awful diarrhoea and cramping the next day. I'm not a veggie or a vegan
I really sympathize with you, and like the previous person said, they try to fob you off with beta blockers etc when that isn’t what we need! I hope the B12 jabs help you feel better . It’s a constant battle isn’t it, and worrying about what you can and can’t eat and drink. I’m sure hormones do play a part but the over all deficiencies are the main problem and quality of life is so badly affected. I can’t absorb iron or B12 very well and iron wrecks my stomach so I’m always so low in it as give up taking it!
If you can't absorb B12, taking oral supplements are unlikely to help. If your doctor won't follow NICE guidelines it may be time to change, the alternative is diy treatment I'm afraid.
I can understand how you feel. As you know, your ferritin is very low which means your iron stores are also very low. This will mean that your blood will be carrying insufficient oxygen for you to function properly. From what I've learnt, you have what is known as ferritin deficiency without anaemia, an increasingly recognised condition which has the symptoms of anaemia without blood tests showing anaemia.When I had a similarly low level of ferritin I paid privately in February to have a ferritin infusion supervised by a haematologist. You can also pay at health and well-being clinics to have ferritin infusions. He told me to take oral sub-lingual iron two months after the infusion but this disagreed with my gut so on this site I learned about heme iron. I use the one from Three Arrows in the US. This very effective iron treatment (approved of by my haematologist) taken with the ferritin boost, in addition to EOD SI B12 for two years (my B12 was 90), a good diet and limited physical exercise, my health has significantly improved over two years. I began on 20mg of heme and increased in stages to 60mg. It is strong stuff and I have to regulate the third 20mg on a daily basis. It is bovine-derived.
I hope this helps you find a recovery/management regime.
I concur with Nackapan 's advice and to treat your vitamin deficiency and not be swayed by the GP mentioning menopause at this stage.Many of us were told we had menopause symptoms, but my hair loss, anxiety, depression, extreme exhaustion and brain fog were almost entirely cleared up by treating my iron and B12.
I agree also that you should take 400mg of folate with those levels now you've started treatment.
What iron have you been given? It took me about 5 weeks before I noticed any difference after supplementing iron and your levels are very low. It may be better to purchase a better quality iron than the prescription if you have any tummy probs. And remember to take it at least 1 hour away from food and tea and coffee if you can.
I didn't know this about taking iron more than an hour apart from food and caffeine. Have been taking with my breakfast since April! Does it affect absorption?
Yes, tea and coffee and many foods, particularly those with calcium can inhibit absorption.Thing is lots of people struggle with iron as it upsets their tummy, particularly on an empty stomach.
I take mine first thing on a morning, but every other day to minimise negative effects.
I haven't had an issue with an upset tummy to date...but I was expecting my blood tests to show a higher increase than it did after 3 months of daily iron. Maybe I haven't been fully absorbing - will adjust the time I take it!
Yes, the polyphenols in coffee and tea affect absorption of nonheme iron. Heme iron is not affected. But there are things you can eat/drink with nonheme iron to greatly improve absorption such as Vitamin C, Beta-Carotene, fermented foods, soy sauce, sourdough bread, garlic and onions. If you include any of those its tricky to say what the absorption result might be overall. Foods with a calcium content over 40mg can also inhibit iron absorption to some degree, as do phytates and turmeric, coriander and chilies.
If you are iron deficient or often run low on iron (which can be the case with low stomach acid from PA), it could be worth moving your tea or coffee out 1 hour from meals.
If you don't have iron issues, it's not something to worry about.
My iron was low, but not low enough to be anemic. I have been on daily supplements since April though and have been advised to continue on them. I have to avoid garlic, onion, lactose and wheat but I think my iron supplement includes vitamin c to aid absorption. It's a constant learning curve!
I had a 24 hour monitor fitted after the usually occasional thumping heart got worse.
It would wake me in the night for instance, as if someone had dropped a heavy book onto the floor next to my head: I'd sit bolt upright suddenly, heart pounding. The instances became every day and night occurrences.
It was diagnosed as "ventricular ectopics" - I'd had 4,000 episodes in the 24 hours. This apparently harmless condition has no known cause, can start for no apparent reason, and stop just as suddenly. A bit of a mystery.
My GP treated me - a cardiologist was not required for treatment or monitoring. I was offered statins which I did not take, preferring to wait it out and see if it just went away. After a month or so, it did.
I do think this is connected to B12 deficiency but can find no proof.
So many huge numbers here with ectopics. Mine are nowhere near that, at least that I know of. Heart rate monitor comes off today. Standard yearly blood tests would be amazing but would cost the NHS a fortune. I can honestly see both sides on that one
My palpitations never got that high either - only 88 alerts in the 24hrs with a Holter monitor. The doctors said “we’re only concerned if they go over 100”.
It was scary because I’ve never had heart issues in my life, so that number to me felt ridiculous! And it was when I was resting/walking/eating, everything!
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As you probably know iron is transported around the body in the red blood cells. Oxygen adheres to the iron in the circulatory system. So LOW iron = LOW oxygen. When the heart detects low oxygen levels it beats faster to create more....hence one of causes of an increased heart rate.
I inject B12 weekly and take a GOOD B Complex to keep all the B vits in balance
I'm just a Hashimotos sufferer with B12 issues due to surgery - not a medic 😊
this forum is for sharing your story and getting advice. Welcome.
141 is low. Whether you need lifetime injections will depend on cause of b12 deficiency, specifically if it was diet related or not. B12 comes from eating meat. Do you eat meat daily or are you vegetarian?
By the way eating meat once a week isn't enough. It must be daily but the RadA is pretty low.
If it's due to diet, you may need frequent injections for as long as your neurological symptoms or any symptoms remain. Only then try and space out injections.
B12 cannot be tested after an injection unless you wait 3 or more months without injections which isn't worth doing because if a b12 deficiency is left untreated, the neurological damage could become permanent.
Never let anyone convince you to space out injections. Do them daily or every other day.
for me I can't absorb b12 orally at all! I eat a lot of meat and was taking 50x the RDA of b12 when found low. It took 2 years to get nearly fully recovered, but I felt amazing and was able to work. Before I was bed ridden with fatigue and had so many other symptoms. So there is hope but it will take time and persistence.
If it is diet related, feel free to ask those in that same category how long it took them and how often they injected.
There are no dumb questions or even just vent here. Most likely, We understand your situation better than most around you because b12 deficiency is a very misunderstood and underestimated problem. Humans would die without b12 as it is responsible for cell generation. Our cells die and regenerate every 120 days. This is why we end up with the symptoms we have when deficient
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