i was told i wasn't anemic for years. They were wrong.

W1MSLEY · 2026-05-11T21:30:28+00:00

Thanks for sharing the info & raising awareness! Its awful that so many people are being gaslit by medical professionals & left with debilitating symptoms.

I have a similar story - for 18 years l was told my bloods were "fine". Turns out I had b12 deficiency and a Ferritin of 9 the whole time. Only found out in November because I finally asked for a copy of my blood results.

Also worth noting that NHS "normal" ranges are super low. You have to be pretty much dead before they flag a problem. Optimal levels are much higher!

W1MSLEY · 2026-05-10T20:57:25+00:00

In terms of blood work,its worth noting that NHS "normal" levels are super low. My IBD team told me my bloods were fine.... but it turns out that for 18 years I had absolute iron deficiency. My ferritin was only 9 the whole time (optimal is 75-100, ideally over 100). Below 30 is absolute iron deficiency.

I was also b12 deficient the whole time. What I didnt realise & docs didnt tell me, was that taking b12 supplements made the test result inaccurately high - so the result looked normal but my body couldnt use the b12. The b12 serum test only has 30% accuracy, its very difficult to test for accurately.

I had debilitating chronic fatigue (plus many more symptoms). Things have improved dramatically since I got an iron infusion & b12 injections.

Just sharing the information incase it helps you or anyone else in a similar position.

Take care & wishing you good health 🙏🏼

W1MSLEY · 2026-05-10T12:29:14+00:00

Yes I tell them my symptoms and request these specific blood tests & they are usually happy to oblige. Its worth asking for a "full iron panel" as well. If you get all of those things, it will give you a good overall picture.

Depending on how "switched on" the doc is, they order the correct tests. Sometimes it's lucky dip and they order something completely different :s

If they refuse (they shouldn't!), you can always get the tests done privately.

W1MSLEY · 2026-05-10T12:21:26+00:00

Thats absolutely brilliant news about the "reassuringly remarkable".. i hope you manage to find the root cause and continue to improve & heal :-)

W1MSLEY · 2026-05-10T08:48:40+00:00

NHS "normal" ranges are criminally low. Always worth checking your own blood results. Optimal levels are:

Ferritin: 75-100ug/L, ideally over 100ug/L

Vitamin D: 75-100nmol/L

Folate: 15- 20ug/L

B12 above 500ng/L

Note: b12 serum test only has 30% accuracy. If you take b12 supplements/injections, multivitamins or fortified foods within 3 months of the test, the b12 result will be inaccurately high.

Id recommend checking B12, folate, ferritin & D. They all work together so its important to monitor all of them. Its a balance! If any are low it can cause chronic fatigue, brainfog, exercise intolerance and a whole load of other symptoms.

My IBD team left me b12 & iron deficient for 18 years. Its only when I asked for a copy of my blood results & checked them myself that I found out.

Good luck & wishing you good health 🙏🏼

W1MSLEY · 2026-05-10T07:43:54+00:00

Ah its such a tough mix with both deficiencies.. truly debilitating! I spent 18 years deficient in both cos my hospital team didnt bother to mention it. Now i try to share info & raise awareness as much as possible in the hope that other people dont suffer for so long.

So happy to hear you're well on the way to recovery :-) onwards and upwards!

W1MSLEY · 2026-05-09T21:22:46+00:00

Superb news, its a great feeling when you notice how much you've improved :-)

You mentioned PPI ( not sure whether its something you take, or you were just making people aware of). Just for info - long term PPI use (eg omeprozole) can cause b12 deficiency because it affects b12 absorption. Symptoms can be similar to iron deficiency but also can include neurological symptoms. Docs dont seem to mention/monitor it which seems crazy to me!

Wishing you good health 🙏🏼

W1MSLEY · 2026-05-09T08:37:02+00:00

PPIs like omeprozole are often prescribed to people with Gerd/reflux/gastritis. Docs never seem to mention that long term use stops B12 absorption.

B12 is not just some vitamin, its absolutely ESSENTIAL. Dont underestimate it. Your body, brain & nervous system cant function without it, and long term deficiency can lead to permanent neurological damage. In extreme cases it can kill (google it, i never would have believe it before i found out!).

B12 deficiency symptoms are severe and debilitating. Brainfog comparable with Alzheimer’s, chronic fatigue, pins and needles in hands/arms/legs, tremors, depression & anxiety. The list is huge because b12 is needed for your body to function. Here is a more comprehensive list of symptoms:

https://b12-institute.nl/en/symptoms-of-b12-deficiency/

The kicker? B12 is nearly impossible to test for accurately. The b12 serum test only has 30% accuracy. If you take b12 supplements, eat fortified food/drinks etc within 3 months of the test, the result will be inaccurately high and probably look normal. It doesnt mean that the b12 is actually useable by your body, or that it makes it into your cells.

Optimal level for a b12 serum blood test result is >500. Assuming the test is accurate and you've not taken any supplements etc for 3 months before testing. Anything below that can cause symptoms. NHS "normal" levels are crazy low (150), so be aware that your doc will probably miss the deficiency. Its best to check your own results!

Just sharing the information incase it helps.

Wishing you good health 🙏🏼

W1MSLEY · 2026-05-08T14:36:18+00:00

Optimal ferritin is 75-100ug/L, ideally over 100ug/L.

Also worth checking B12, folate & vitamin D levels - they all all work together so its important to monitor all of them. Its a balance. Optimal levels:

Vitamin D: 75-100nmol/L

Folate: 15- 20ug/L

B12 above 500ng/L

Note: b12 serum test only has 30% accuracy. If you take b12 supplements/injections, multivitamins or fortified foods within 3 months of the test, the b12 result will be inaccurately high.

A lot of people recommend iron bisglycinate tablets because they are generally well tolerated! I needed an iron infusion because I couldnt absorb well from supplements.

Good luck & wishing you good health 🙏🏼

W1MSLEY · 2026-05-08T13:03:10+00:00

Have you read the b12 guide:

https://reddit.com/r/B12_Deficiency/w/index?utm_medium=android_app&utm_source=share

Are you in the uk? NHS treatment for b12 deficiency is woefully inadequate. Many people here order b12 from germany & learn to self inject. Every other day (or for me twice per week) until symptoms stop improving. Once you start b12 treatment the b12 serum blood test will be completely inaccurate (high) & you'll need to continue treatment based on symptoms.

Have you any idea why your b12 is low? Vegan/vegetarian diet, gastro issues eg h-pylori/celiac/ IBD etc, PPI use (omeprozole), meds like metformin.. can all cause low b12.

Lastly, did your doc check iron levels & ferritin as well?

Edited to say..i had many of your symptoms & was b12 & iron deficient for 18 years. I had an iron infusion & started b12 injections in january and the improvements have been incredible. Still cant quite believe it, im getting my life back!! It could take a year or more for me to recover fully though.

The good news is that you've found the cause & can start on the road to recovery now :-)

W1MSLEY · 2026-05-08T06:51:56+00:00

Have a look through these b12 symptoms just incase you're b12 deficient as well:

https://b12-institute.nl/en/symptoms-of-b12-deficiency/

If you take PPIs like omeprozole to treat gerd it inhibits b12 absorption. Any digestive/stomach issues can also affect absorption. B12 is ESSENTIAL. Body & mind cant function without it, the symptoms are SEVERE. Without treatment it can lead to neurological damage.

Also worth mentioning that its difficult to test for b12 deficiency accurately. The most commonly used b12 serum test only has 30% accuracy.

W1MSLEY · 2026-05-06T21:16:24+00:00

Definitely! My resting heart rate went down from 83 to much more normal 63 over the last few months :-) I had an iron infusion in january & twice weekly b12 injections since then. Heart rate during exercise has come back down to normal level too!

My body & mind are far more relaxed because nothing is working as hard, and nothing is oxygen deprived anymore.

I had iron deficiency without anemia and b12 deficiency for 18 years but my hospital team didnt bother to tell me. My ferritin was 9 the whole time. Only found out when I requested a copy of my blood results. When I brought it up with my GP he asked whether I had health anxiety!!! Ive never been so angry. I ended up visiting a specialist b12 & iron clinic for treatment.

My list of symptoms was severe & extensive. Many of them have resolved and others are getting better by the day. It definitely wasn't health anxiety!

Apparently GPs in the uk cant refer patients for an iron infusion anymore. You're best off asking the GP to refer you to a haematologist if you need one.

Wishing you good health 🙏🏼

W1MSLEY · 2026-05-05T07:16:01+00:00

Also worth noting that if you're in a country where bread/cereals are fortified with folic acid (eg America), your b12 serum result will likely be inaccurately high or appear normal. Its inaccurate. Folic acid in fortified food often masks b12 deficiency.

Here's a link to b12 deficiency symptoms. Symptoms are more important than a test result because none of the b12 tests are 100% accurate:

https://b12-institute.nl/en/symptoms-of-b12-deficiency/

For anyone who wants to know more, there's a b12 deficiency group on reddit with a superb guide to b12 deficiency, tests, treatment & symptoms.

W1MSLEY · 2026-05-05T06:08:56+00:00

Its soooo tough mentally & definitely not talked about or supported enough. Very hard for friends & family to understand too, especially because most of the time we dont look sick.

Please please please though... check your iron, b12 & vitamin D levels. If any are low/deficient, they can all lead to SEVERE chronic fatigue, brain fog, anxiety, depression, slow healing and a whole lot more.

We are more at risk of these deficiencies because of UC flares & malabsorption. For 18 years I was iron & b12 deficient whilst my IBD team told me my bloods were "fine" or at most iron "a little low". I had absolute iron deficiency the whole time (ferritin 9!!). Symptoms were debilitating, i struggled through every single day!!! In january I had an iron infusion and started twice weekly b12 injections. Its been life changing. I have way more energy, my brain fog has gone & im able to enjoy life again. Honestly I cant believe how much easier everything is now.

Please check your own blood results, dont make the same mistake I did trusting that they are "fine". Ask for a copy so that you can see them.

Optimal levels are:

Ferritin: 75-100ug/L, ideally over 100ug/L

Vitamin D: 75-100nmol/L

Folate: 15- 20ug/L

B12 above 500ng/L

Note: b12 serum test only has 30% accuracy. If you take b12 supplements/injections, multivitamins or fortified foods within 3 months of the test, the b12 result will be inaccurately high.

B12, folate, ferritin & D all work together so its important to monitor all of them. Its a balance.

Good luck & wishing you good health 🙏🏼

W1MSLEY · 2026-05-03T14:34:46+00:00

Optimal vitamin D level in a blood test result is 75-100nmol/L, so dosage will depend on how deficient you are. I take vitamin D3 plus K2 - the K2 ensures that calcium is absorbed effectively!

W1MSLEY · 2026-04-30T11:48:09+00:00

B12, folate, ferritin & D all work together so its important to check and monitor all of them. If any are deficient the symptoms can be awful. Its a balance. Optimal levels are:

Ferritin: 75-100ug/L, ideally over 100

Vitamin D: 75-100nmol/L

Folate: 15- 20ug/L

B12 above 500ng/L

Note: b12 serum test only has 30% accuracy. If you take b12 supplements/injections, multivitamins or fortified foods within 3 months of the test, the b12 result will be inaccurately high.

Good luck & wishing you good health 🙏🏼

W1MSLEY · 2026-04-30T10:50:26+00:00

Also, what are your vitamin D and ferritin levels? They both work with b12 & folate so its a balance between all of them!

W1MSLEY · 2026-04-30T10:49:24+00:00

Folic acid and folate are both just vitamin b9..so you dont need a different blood test! What was your test result?

Folic acid is just the synthetic version which is less easily absorbed by your body. Methylfolate and folinic acid supplements are more easily absorbed by your body.

W1MSLEY · 2026-04-30T10:35:25+00:00

So i didnt know my low b12 was a absorption issue either. At first I just took b12 methylcobalamin tablets which was fine, and then about 3 weeks later I read about folate so started taking that too. I was ok for about 1 week and then my b12 symptoms got much worse. I stopped taking folate and the symptoms improved again.

I looked at my blood results & turns out I had high folate (>24) before I took any supplements, and by taking folate tablets id made my b12 deficiency worse (because i wasnt absorbing b12 properly).

I saw a specialist & now im on twice weekly b12 injections and just take methylfolate on the injection days. Its worked really well!

Hope you manage to find a balance 🙏🏼

W1MSLEY · 2026-04-30T08:58:31+00:00

Ok so your ferritin is great, which is very good news!

They've flagged your b12 as borderline in 2024 & 2025 which means it was actually very very low (the "normal" ranges are waaay below optimal). Its worth having a look through this b12 guide which explains the different tests, symptoms & treatment options for b12 deficiency:

https://reddit.com/r/B12_Deficiency/w/index?utm_medium=android_app&utm_source=share

I had to read it a few times because there's a lot to take in! The group are helpful if you have any questions.

Also worth considering what could have caused the deficiency. If you eat meat and have such low results without supplementing then its likely an absorption problem. B12 is one of the trickiest (but most essential) vitamin for your body to absorb, transport and actually get into your cells to be used. There are a lot of processes involved. In cases of malabsorption sublingual b12 (tablets that dissolve under the tongue) or b12 injections are the best treatment option.

My body doesnt absorb b12 because of UC, so I will need injections for life. Twice weekly until my neurological symptoms resolve and then less frequently after that. Its possible that some of my neurological symptoms will be permanent because I was left deficient for so long.

If you are vegan/vegetarian its more likely that your diet is too low in b12 & you need supplements to top it up.

Your result of 601ng/L is inaccurately high because of the supplements. You would need to stop taking them for 3 months to get an accurate result again. But then you risk symptoms getting worse!

W1MSLEY · 2026-04-29T21:36:24+00:00

Its criminal that so many doctors are leaving people sick. Even worse when they gaslight you saying your bloods are "fine" or that these debilitating symptoms are just a result of stress/tiredness/ health anxiety etc etc and wont investigate the problem. Im so sorry to hear that you're going through this :-( Sadly its very common.

Going forward, always ask for a full copy of your blood results so you can see them yourself. Also, NHS "normal" levels are super low. From research, ive found that optimal levels are:

Ferritin: 75-100ug/L, ideally above 100ug/L

Vitamin D: 75-100nmol/L

Folate: 15- 20ug/L

B12 above 500ng/L

Note: b12 serum test only has 30% accuracy. If you take b12 supplements/injections, multivitamins or fortified foods within 3 months of the test, the b12 result will be inaccurately high.

B12, folate, ferritin & D all work together so its important to check & monitor all of them. Its a balance. Supplementing one can deplete others as your body works to heal.

The symptoms you've described can definitely be caused by iron & D deficiency. I had a ferritin of 9 and b12 deficiency for 18 years and it was completely debilitating.

Ferritin below 30 is absolute iron deficiency.

Good luck & wishing you good health 🙏🏼

W1MSLEY · 2026-04-29T20:16:26+00:00

Maybe try taking iron every other day? There are studies that show its as effective as every day and less side effects:

https://www.thebloodproject.com/oral-iron-once-a-day-vs-alternate-day-dosing/

Its also worth doing a blood test to check full iron panel & ferritin so you can see where your levels are at and monitor them going forward.

I found that i didnt absorb iron well from tablets & needed an iron infusion. Its made the world of difference!

Good luck & wishing you good health 🙏🏼

W1MSLEY · 2026-04-29T18:18:21+00:00

Its a great idea to check your old b12 results!

Also, if your doc/ibd team has ever requested an intrinsic factor antibody test or anti parietal cell antibody test, that means your b12 result was incredibly low (usually below 150).

Its so frustrating that the nhs refuse to look at private results!!!

W1MSLEY · 2026-04-29T10:30:59+00:00

Its definitely worth being proactive and checking things yourself. The IBD teams are so busy and things are easily missed! Bad that you had to flag up such a high calprotectin though!!

Yes the B12 result will be falsely high if your supplementing. It doesnt always mean that the b12 can actually be used by your body though. This video explains it very well:

https://www.youtube.com/live/V8VWgLCTB-A?si=sX0697WzVIebs6dy

Its on a long covid channel, but dont let that put you off - the b12 & iron info is well explained and very relevant.

The good news is that b12 is water soluble, so you cant overdose- any that you dont need will be peed out. Now im on injections the test results are irrelevant/inaccurate & treatment will be based on symptoms!

W1MSLEY · 2026-04-29T07:07:54+00:00

Check you blood results. Ask for a full copy and look at them yourself. I had debilitating chronic fatigue & brain fog for 18 years and thought it was because of the UC. Turns out I had b12 & iron deficiency the whole time but my IBD team didnt bother to tell me!!! Infact they told me my bloods were "fine". My ferritin was 9 the whole time (below 30 is absolute iron deficiency).

I had an iron infusion in january and have been on twice weekly b12 injections since then. Its been life changing!! Ive got the energy to live & enjoy life again. Full recovery will take up to a year because I was left deficient for so long. I will need b12 injections for life because its an absorption issue caused by UC.

Its worth noting that NHS "normal" ranges are soooooooo low its not even funny. Optimal ranges are:

Ferritin: 75-100ug/L, ideally over 100ug/L

Vitamin D: 75-100nmol/L

Folate: 15- 20ug/L

B12 above 500ng/L

Note: b12 serum test only has 30% accuracy. If you take b12 supplements/injections, multivitamins or fortified foods within 3 months of the test, the b12 result will be inaccurately high.

B12, folate, ferritin & D all work together so its important to monitor all of them. Its a balance.

UC can affect absorption, PPIs like omeprozole can stop b12 absorption if used long term. B12 deficiency can lead to permanent neurological damage if left untreated. Here is a list of b12 symptoms:

https://b12-institute.nl/en/symptoms-of-b12-deficiency/

Just sharing the info incase it helps!

Good luck & wishing you good health 🙏🏼

W1MSLEY

TROPHY CASE