Hello, can someone help me what is the best way to get my Ferritin levels up? currently at 42 which was missed by 4 Drs, or I should say ignored, and was told everything looks normal. Based on response I got on another forum, anything below 50 causes massive hair shedding. I am a new vegan, and I understand that lots of answers will point to that, but I am looking for someone to help recommend supplements or something that could. My wedding is in November 2023 and I am devastated I will be a bold bride. thank you all so much
Low Ferritin- Massive Hair loss and a... - Pernicious Anaemi...
Low Ferritin- Massive Hair loss and all kinds of symptoms
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MimiC811
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Hi,
I hope you find the answers you need.
Has your doctor checked your vitamin B12 levels?
Pernicious Anaemia is an auto immune condition that can lead to B12 deficiency.
Some people on this forum have other deficiencies such as iron, folate and vitamin D as well as B12.
People with other causes of B12 deficiency besides PA also use this forum.
Hair loss is one of the symptoms of B12 deficiency. It can also happen with folate deficiency.
Thyroid
It's quite common for forum members here to also have thyroid issues which can also lead to hair loss.
Have you had any thyroid tests?
Might be worth putting any thyroid results on the Thyroid UK forum on Health Unlocked.
A few links about B12 deficiency
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper started PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some overseas members.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum.
Testing for PA
pernicious-anaemia-society....
B12 Deficiency Info website
B12 Awareness (US website)
Stichting B12 Tekort
(Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 Institute - Netherlands
I'm not medically trained.
But you are kind. And v helpful.
Thank you so much ❤️ B12 seems to be normal in fact above average for a vegan so no issue there. I do have hypothyroidism which I am seeing is linked to low ferritin. Thank you for all the links 🙏🏼
Hi again,
"B12 is no issue based on recent labs"
It's possible to have severe B12 deficiency with normal range serum B12 results.
It happened to me.
I developed dementia symptoms and spinal symptoms in my late 30s with most of my serum B12 results from 300 - 500 ng/L. I did have one result in past that was well below range. I had over 50 symptoms that were typical of B12 deficiency.
If I had listened to my doctors who said it couldn't be B12 deficiency because my serum B12 was normal range, I'm quite sure I would now be in a care home with permanent dementia and permanent damage to my spine.
Some links below may have details that could be upsetting.
UK guidance on treatment of B12 deficiency suggests that people who have the symptoms of B12 deficiency should be treated even if their serum B12 results are within normal range.
This is a UK blog post about being symptomatic for B12 deficiency with an in range serum (total) b12 result. Some of the information will be specific to the UK.
b12deficiency.info/your-ser...
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12-institute.nl/en/symptom... (B12 Institute Netherlands)
b12awareness.org/cobalamin-...
If your symptoms suggest B12 deficiency but your serum (total) B12 is within normal range, you may want to search online for info about Functional B12 Deficiency.
This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops B12 deficiency symptoms.
These blood tests may be useful in helping to diagnose Functional B12 Deficiency...
Active B12 test (also known as Holotranscobalamin or HoloTC)
Homocysteine test
MMA ( Methylmalonic Acid ) test
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Some info in above link is specific to UK.
There are lots of potential causes of B12 deficiency.
A few I can think of are ...
diet
Pernicious Anaemia
Coeliac disease (spelt celiac in US)
Crohn's disease
damage to terminal ileum (part of gut where vitamin B12 is absorbed)
some medicines/drugs
exposure to nitrous oxide
internal parasites such as fish tapeworm
Do you have any of the following risk factors?
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
Hi, thank you so much for all the information. I certainly had no idea this could exist, I did look up B12 deficiency symptoms but I don't think I have most of them other fatigue and brain fogue. Bellow is my B12 test results, I am going to see a functional medecine Dr and I wrote down all the tests you mentioned above to bring up during consultation. The conventional Drs dont like testing for anything when they believe evrything "looks normal". I appreciate all the details. I feel I received more support in this forum in a week than I did in the last two years seeking answers. I truly appreciate everyone here taking the time to help me.
B12 test results
To boost non-heme iron absorption, start with eating plenty of iron-rich foods:
veganhealth.org/iron/#iron-...
Add a vitamin C source at meals such as those listed here : nutrients.food-nutrients-ca.... Other things that boost non-heme iron absorption are Beta-Carotene sources like Carrots, Sweet Potato, Pumpkin, Squash. Onion and Garlic also boost absorption. If you supplement Iron be careful to not go overboard, this will not only cause stomach upset but large doses (100mg+) taken every day will paradoxically decrease iron absorption because the body increases hepcidin in response, which downregulates iron uptake. Instead use smaller doses of a form like Iron Bisglycinate or Ferritin : florahealth.com/products/fe... on alternate days. Make sure you're eating good iron sources like those mentioned in veganhealth.org/iron/#iron-... , especially lentils and beans. Use canned beans or an instant pot to quickly cook the dried varieties.
In terms of dietary requirements , the following page may be helpful to see how to meet nutrient requirements:
Are you already taking B12 and do you know what form and how regularly? It's vital to establish a regular adequate B12 supplementation routine as a vegan otherwise deficiency is almost inevitable. Dose amount and frequency is more complex than it seems at first due to how absorption works - check the table at the veganhealth site to see how that works. If you have symptoms of B12 deficiency its important to get tested before starting any supplementation as supplementation affects the most common test that doctors rely on to diagnose deficiency.
Supplementing the 6-8 nutrients you need as a vegan separately can be a bit of a pain so I advise to instead go with a good custom vegan supplement like Complement: lovecomplement.com/products... or Eimele Essential 8: eimele.com/products/simon .
Consider also a 250-300mg daily Calcium supplement (take it away from meals) if you're not using Calcium fortified soya milk along with eating green leafies like Kale/Bok Choi most days.
The "Daily Dozen" app can also be helpful to establish a healthy vegan eating pattern : nutritionfacts.org/daily-do...
Thank you so much for the information. I looked up the compliment supplements and they actually look good 👌 i will be ordering some. B12 is no issue based on recent labs. Only low ferritin and hypothyroidism.
Hi,
Hypothyroidism is often caused by auto immune issues.
NHS link about hypothyroidism (hopefully you can access this)
nhs.uk/conditions/underacti...
If you have an auto immune condition it can increase the risk of developing other auto immune conditions.
If your symptoms are suggestive of B12 deficiency then I would expect your doctors to at least test you for PA (Pernicious Anaemia) and Coeliac disease, two auto immune conditions that can lead to B12 deficiency.
As your serum B12 results are within normal range it may be hard to persuade them to consider the possibility of B12 deficiency.
Do you mind me asking what your actual result was for serum B12 along with the reference range?
Do you also have results for folate, Vitamin D and Full Blood Count (also known as Complete Blood Count)?
One thing I learnt was to always get copies of or access to my blood test results.
I was told more than once by doctors that everything was normal and when I saw my results I found abnormal and borderline results.
Has your doctor given you a full set of iron tests or just ferritin?
labtestsonline.org.uk/tests...
UK guidelines say to test patients for coeliac disease if they have B12, folate or iron deficiency.
More info on Coeliac UK website
You say you are a new vegan, do you mind me asking how long you've been vegan and what was your diet like before you became a vegan?
It's possible to have more than one cause of B12 deficiency at the same time.
See links below for common wrong ideas that health professionals may have about B12 deficiency
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from other countries)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from other countries)
b12-institute.nl/en/diagnos...
Hello, thank you so much for taking the time to answer my question. I really appreciate it. I will answer all your questions below and attach lab results separately since I can only attach one image in this reply.
About my thyroid, I was told by three drs including one Endo that EVRYTHING IS NORMAL ( attached most recent thyroid results as well)
Do you mind me asking what your actual result was for serum B12 along with the reference range?
Since May 2021. I do have to admit, I went vegan without doing any research and cold turkey. Partially because I was eating so unhealthy during COVID, and every time I ate meat I felt so sick and was constipated for 4/5 days. I wanted to go vegetarian for years due to moral/ethical stance on animal cruelty. Then learned about the benefits of a plant based diet and decided to just give up all animal by products.
Do you also have results for folate, Vitamin D and Full Blood Count (also known as Complete Blood Count)? Yes see attached
I am going to see a functional medicine Dr and will ask to get tested for the a/m illnesses. Based on below B12 deficiency symptoms: I am adding a yes to what I feel I have:
extreme tiredness. ( some tiredness cant say extreme, i workd daily and exercise 5/6 a week)
a lack of energy. ( on and off)
pins and needles (paraesthesia) ( NO)
a sore and red tongue. (NO)
mouth ulcers. (NO)
muscle weakness. (NO)
disturbed vision. (NO)
psychological problems, which may include depression and confusion. (YES) but I was diagnosed with dysthymia in 2015.
B12 results ( November 2022)
Folate
Folate results ( November 2022)
Vitamin D
Vitamin D results ( November 2022)
Hi,
Folate
I think I can only see the folate reference range which appears to be >3 meaning more than 3ng/ml.
Is there another number showing the actual result for folate?
With Vit D I think it's just the reference range I can see which appears to be 30 - 100 ng/L.
Is there another number showing the actual result for Vitamin D?
For other results you have posted, I can see the results but can't see which tests they are.
When you post results, take care not to include any personal details or details that could identify you to protect your privacy.
Hi Dear, if you click on the image it should expand and let you see everything the results are on the very far right and range is on left. Yes thank you i cut off all images to removed my name
Hi,
Thanks for helping me work that out.
I can't see anything obvious in the results for Full Blood Count.
I'm not a health professional.
No worries. I use Complement myself. Eimele Essential 8 has Iron while Complement does not so that might be an important consideration for you. But both are good.
I top up the EPA/DHA content by another 400-600mg but otherwise not much else is needed. Complement has Magnesium versus the Calcium in Eimele's Essential 8 and Calcium is much more likely to be a problem than Magnesium if you eat mostly whole food plant based. For example I get almost double the magnesium RDA before supplementation but an extra 200mg Magnesium wont do any harm. I choose complement over Eimele mainly because I dont need the extra Iron (on an average day without supplementation my diet has 3 times the Iron RDA). The nonheme Iron target is different to heme Iron at 1.8 times the quoted RDA but as you can see, easy enough to clear with room to spare if you regularly eat the foods mentioned in the links in previous post above.
Other things which are much more optional are Taurine, Creatine and Beta-Alanine. Of the three I would most recommend Taurine at about 500mg, its pretty wonderful stuff imo and some studies link it to longevity, eye health etc. Creatine and Beta-Alanine are useful for physical performance but not necessary for health per se. Try and get third-party tested supplements to make sure you're not getting high amounts of contaminants (Complement is third-party tested).
Don't be too confident about B12 from a serum result, my B12 serum test was 636 when I had neurological symptoms.
Instead just look to your supplementation routine. Weekly would be 2500mcg, Daily 100mcg-250mcg. Or smaller amounts like 10mcg 3xday with meals. Any three of these choices are fine as long as you follow it religiously and don't skip doses. Complement is designed to be taken 3x day so makes it pretty straightforward. I usually carry 2 or 3 extra in a hardcase in case I'm delayed somewhere etc.
I think Technoid makes a good point here.
"Don't be too confident about B12 from a serum result, my B12 serum test was 636 when I had neurological symptoms."
I had severe neurological symptoms with serum B12 results as high as 500 ng/L.
I have read research articles where people developed permanent damage to spinal cord from B12 deficiency with normal range serum B12 results.
MimiC811, I found from the Thyroid forum that you posted a B12 serum result of 915. Thats indeed pretty high and would normally suggest supplementation - are you supplementing B12 at all or using any food fortified with B12? If not this raises a lot of doubt in my mind as to whether you really do have adequate B12 - the serum result can be very confusing. The article posted about paradoxical high B12 is interesting : b12oils.com/paradoxical.htm.
I was aware that Iodine, Selenium and Molybdenum are needed to activate B2. Do you eat much iodine rich food like seaweed? Selenium can also be an issue on a vegan diet which is why both iodine and selenium are provided in the custom vegan supplements I mentioned. Without adequate levels of both, you'll struggle to activate B2 which will affect essential metabolic cycles B12 is involved in. The article maintains it will result in build up of inactive B12 in serum. Since your active B12 is on the lower end of the range but serum quite high without supplementation it's possible thats what's happening here. How long have you been vegan and was your diet high in animal foods before?
Thank you for the info again. I really appreciate it. I been a vegan for a year and half, I do not supplement daily with the a/m but I do take athletic greens and B12 on and off. I recenelty started eating one brazilian nut a day, but have to admit not daily. Additionally, I live in Japan and do eat seaweed more than I have my whole life, so I am not sure idione is an issue, do I need to get that checked? what is the best way to get tested for this? (Since your active B12 is on the lower end of the range but serum quite high without supplementation it's possible thats what's happening here.) I ate meat regularly especially during 2020 when COVID was bad because I was depressed and binged a little with my BF. I would say in 2020 I ate more red meat/ chicken than I normally would. I also got COVID in September 2022. I am attaching below my B12 results from test done in February 2022. The Dr was shocked it was that high and said it wasn't a concern. My thyroid was high but he refused to help me, he said because the other two within range, everything was normal.
I guess my main question is , if I am not experiencing B12 deficiency symptoms, but I am experiencing the hair loss (70% hair gone) / stomach pain/gas/ and discomfort and low sex drive ( non existent) , how do I know if its from Hypothyroidism? low Ferritin? or B12 deficiency? Also, what is your thought on seeing a functional medicine Dr? I am a bit confused and overwhelmed 
First Labs when I started seeing symptoms ( 8 months vegan)
Absolutly, I will be asking to get the MMA test
Thank you again for the information, I have to admit, I am a failed vegan because I didn’t pay attention to supplements religiously as you mention and and didn’t make sure I was getting the right food that would replenish my body after cutting off meat. I also failed to mention earlier, when I went vegan, I lost around 20LBS in 6 months or so and was working out regularly. I took supplement but here and there, but certainly not in the first 6 months going vegan. I have started logging my daily meals in app to make sure I am getting all the nutrient I need, and calcium seems lower than magnesium. I am going to do an inventory of my current supplements to make sure what's not third party tested can be dumped in trash and start building a supplement regiment. I will make sure to look into Taurine, I never heard of it. Thanks again, your feedback and information is truly appreciated.
Ah. I was forgetting you are in Japan and are eating a lot of seaweed. This is quite important because of your hypothyroid condition and with regards to any Iodine supplementation.You can check your Iodine intake on an app like Cronometer but it sounds like you may be getting more than enough already. The Iodine RDA is only 150mcg and you can get a lot more from seaweed, sometimes too much depending on the variety! take this into consideration when evaluating the supplements I think and also with regard to any treatment you're already getting for your hypothyroid. AFAIK many in Japan get by with Iodine intakes far in excess of the tolerable upper limit in most western countries but I understand this may be because they are adapted to it from a very early age so their thyroid can handle it.
With regards to B12, how much was in the B12 supplement you were taking? If it was 1000mcg and you were taking it least twice a week that would be adequate and explain your elevated B12.
B12 stores are variable but after only year and a half of being vegan, even with irregular supplementation I don't think a significant deficiency is likely. But this is your chance to get on top of it now before it does become a problem so I'm glad you came here. The progression is subtle but when significant symptoms appear, serious damage may happen quickly. Definitely do not become complacent about it! Be sure you're hitting the minimum guidelines daily. The body can absorb around 1.5-2mcg via intrinsic factor every 3-4 hours which is the natural mechanism for B12 intake. Passive absorption is the other route and can absorb 1% of the dose. I have heard passive absorption described as an "accident of physiology". Notice the intake methods are very small and designed in expectation of tiny amounts of B12 being available every day.
This means if you skip a day, you might think, ah , I just need to take 5mcg today instead of 2.5mcg, but this isnt the case - intrinsic factor will max out at around 2mcg I believe, so you would need to either make use of passive absorption (a single dose of 500mcg for example) or a smaller dose three times a day spaced out by 3-4 hours to make up the difference. Thats one of the reasons injections are often needed with severe deficiency - its hard to get in enough B12 through these limited absorption mechanisms. The solution for you is simple, just take your b12 every day at between 100mcg to 500mcg and you should have no problems. But never skip doses to make sure you never run a deficit. Complement supplies 100mcg 3 times a day so you will get 3mcg (1%) by passive absorption alone even before intrinsic factor so this is a very safe dosage. It is not possible to overdose on B12 and this a very moderate amount in comparison to what is injected to correct deficiency for example, so need to worry there.
Please, please DO NOT listen to any medical practitioner who advises you based on a B12 test result to drop your B12 supplementation below the guidelines from veganhealth.org. Most medical practitioners are not adequately trained in nutrition so you are generally NOT getting expert advice. The B12 dosage guidelines at veganhealth.org are written by registered dieticians who have extensive training in this field. They are not amateurs, they are the experts in vegan nutrition and supplementation and most of the time, your doctor will not be. Bear this in mind when you receive any medical advice that contradicts them. You CANNOT overdose on B12 and anyone who tells you this has no clue what they are talking about and you should seek alternative advice. You can research this to confirm.
Why do I say this? From experience. My B12 was tested by my local GP at 636 when I experienced neurological symptoms that I suspected were related to b12 deficiency. I was told I had been "overdosing" on B12 and to drop my supplementation to 250mcg once a month. In fact I had already been taking 8 times less than the requirements for several years (thats why I thought the symptoms were deficiency related (and I was right)) but they were too ignorant to understand this and to my shame I did not know any better and was also confused by the result. The advice they gave me was to take a dose that is 30 times less than the minimum guidelines. This was AFTER my neurological symptoms appeared ! Can you imagine? The direct opposite of what I should have been advised and advice that would eventually have left me disabled or dead.
My clinic never followed up, tested or had any further communication with me about this advice until I collapsed with serious symptoms 2 years later. Do not follow GP advice about B12 supplementation that contradicts best practice nutritional guidelines. They are not experts - for that you should consult the advice from registered dieticians who have genuine nutritional training, preferably one who has worked with vegans.
Solgar iron bisglycinate has a useful amount of available iron as a supplement and is well tolerated.
However the best source of iron is from beef,, lamb, fish, and pork. These are rich in a wide range of other essential minerals and vitamins, especially some of the B vitamins. Meat and and dairy products, are really your only natural source of B12. Natural sources are so much better than supplements because they are bioavailable and come with other compounds only found in food that are "magic ingredients" to help us absorb and assimilate the nutrients we need due to our evolution.
The reason why vegan diets are so unhealthy is because they do not contain the essential nutrients we need and so cause deficiencies with terrible consequences.
Our bodies are very good at compensating so by the time deficiencies show up physically, the body has been struggling with lower than optimum levels for a while and a degree of damage has been done throughout it.
I hope you find a way to get healthy again before your wedding and married life ahead.
Thank yo for your feedback. I believe every diet has its ups and downs, plant based diet has been backed by research to be one of the healthiest, but many vegans, including myself dont do it correctly, and we end up here. I am new vegan and still learning. there is a difference between wholesome plant based and junk vegan, and I can see when I first started i had the latter. Anemia is popular amongst meat eaters as well. But I totally understand your point of view. I will look into Solgar, I appreciate the info.
Some additional courses that may interest you. Some of the prices are a bit eye-watering so you might want to just bookmark and revisit later!
Plant-Based Cooking Courses from Rouxbe from Beginner to Pro:
Rouxbe Culinary Rx: rouxbe.com/culinary-rx/ ($30)
Rouxbe Plant-Based Introductory Cooking Introduction : rouxbe.com/plant-based-intr... ($209.99)
Rouxbe Plant-Based Pro Cookery course : rouxbe.com/plant-based-cert... ($1259.99)
Plant-Based Nutrition Certificate at Cornell:
ecornell.cornell.edu/certif... ($1260)
Nutrition Science Short Course at Stanford:
getsmarter.com/products/sta... ($2,266)
this is awesome, thank you so much. if you dont mind me asking, are you vegan?
I am. And I have the neurological damage from B12 deficiency to prove it LOL.
and some more resources:
Podcasts/Video etc:
The Proof : theproof.com/podcast/
Nutrition Made Simple : m.youtube.com/c/NutritionMa...
Plant Chompers : m.youtube.com/c/PlantChompers
Rich Roll : m.youtube.com/@richroll
The Nard Dog Cooks : m.youtube.com/@thenarddogcooks
Rainbow Plant Life : m.youtube.com/@RainbowPlant...
World Of Vegan : m.youtube.com/@Worldofvegan
Sweet Potato Soul: m.youtube.com/@SweetPotatoSoul
Simnett Nutrition : m.youtube.com/c/Simnettnutr...
Nimai Delgado : m.youtube.com/@NimaiDelgado
Sharon Palmer : m.youtube.com/@SharonPalmer/
Dr.Greger : nutritionfacts.org/ (but watch his advice against all oils including Olive Oil, which is not evidence based - look at Blue Zones)
Unnatural Vegan : m.youtube.com/@UnnaturalVegan/ (she's big on processed foods which I'm not a fan of but otherwise can be good)
Colleen Patrick Goudreau : colleenpatrickgoudreau.com/...
No Meat Athlete podcast : nomeatathlete.com/podcast/
Other Resources
The Vegan RD : theveganrd.com/
Vegfaqs another great site : vegfaqs.com/hardest-vitamin...
Thank you so much, I wish I looked at resources like these before I decided to go Vegan. Is there a vegan health group on here I can join as well?
There is a group called "Vegan Foods For Life" here but its not very active, not focused on vegan health and mostly people post food photos which isn't that interesting to me (I like cooking (sometimes) and recipes/techniques/tips but I'm not really into food photos so much). I did raise the topic of B12 and other nutrient supplementation issues there but I made specific supplementation recommendations - the response was mostly hostile and the topic was quickly closed to replies. But I hope a couple of people took what I said on board and will now either improve their diet or supplement things they might not have realized were missing/low based on the information shared.
I am sorry to hear about your neurological damage from B12 deficiency
Don't be. I don't have PA and my issues are nowhere near as bad as others here who were left untreated for many more years than I. I'm slowly regaining my old level of health and have started to accept some of the lingering issues that are not shifting or improving so very very slowly. The main thing is I can help others like you with information that helps you avoid what I went through.
You mention that you don't have some of the typical symptoms of B12 deficiency such as pins and needles, sore red tongue, mouth ulcers, muscle weakness etc.
Some of the symptoms you do mention eg psychological symptoms, loss of sex drive, hair loss, gut symptoms can be found on lists of B12 deficiency symptoms. See Symptoms lists
High serum B12 results when a person is not supplementing B12, not having B12 injections and not eating lots of B12 rich foods can be a sign of some health conditions.
I would expect a doctor to do some liver function and kidney function tests and further blood tests in a person with high serum B12 who is not supplementing etc.
I'm not medically trained just someone who suffered from undiagnosed and untreated B12 deficiency for many years.
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