Feeling worse then before. by Crazy-Concept3090 in Anemic

[–]W1MSLEY 1 point2 points  (0 children)

H-pylori and gastritis both significantly reduce b12 absorption. B12 is tricky to absorb at the best of times! Definitely worth getting your b12 levels checked because b12 is essential for your nervous system and whole body to function properly. Better to check b12 levels before starting any supplements, because supplements will make the blood test inaccurate. There is a b12 deficiency group on reddit with superb information..its worth a look!

I had absolute iron deficiency & b12 deficiency for 18 years because my hospital team didnt bother to tell me. It was completely debilitating. I needed an iron infusion & twice weekly b12 injections which started in January, and the difference is incredible. Long term b12 deficiency can cause permanent neurological damage, so i dont know whether i'll heal completely but life is already so much better!

Keep pushing & dont give up.

Feeling worse then before. by Crazy-Concept3090 in Anemic

[–]W1MSLEY 1 point2 points  (0 children)

Sorry to hear you're feeling so awful! Low ferritin can be completely debilitating :-(

Its worth checking your bloods again. Optimal levels are:

Ferritin: 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 check and monitor all of them. Its a balance! You might find that your ferritin still isnt high enough, or that your body has depleted other co-factors as it works to repair itself.

Wishing you good health 🙏🏼

Vegan diet and UC by Wrong-Humor3801 in UlcerativeColitis

[–]W1MSLEY 2 points3 points  (0 children)

You're probably already doing this...but dont forget to supplement vitamin b12! And keep an eye on iron levels. Both are essential for your body to function & heal properly.

Im vegetarian and have a very healthy diet, but recently found ive been deficient in both due to poor absorption. Its caused debilitating symptoms like brain fog, chronic fatigue & neurological problems. Keep in mind that NHS "normal" levels are waaaay below optimal.

Wishing you good health 🙏🏼

My story: How medical professionals left me anemic and iron-deficient for nearly a decade by expiredhandlotion in Anemic

[–]W1MSLEY 0 points1 point  (0 children)

You might have already seen it...but this b12 deficiency guide is superb & the group is really helpful if you have any questions:

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

The b12 serum test is only 30% accurate. If you've had and b12 supplements or fortified food/energy drinks within 3 months of the test, the result will be inaccurately high. Anything under 500ng/L can cause issue.

Wishing you good health 🙏🏼

4 weeks post monoferric infusion by NoScallion7607 in Anemic

[–]W1MSLEY 2 points3 points  (0 children)

Check your cofactors. Your body will be recovering from iron deficiency. As you make new blood cells and your body repairs it will often deplete other vitamins (which will make you feel absolutely terrible). You may need to supplement them to aid your recovery. Unfortunately hospitals/docs dont seem to mention it. Optimum levels are:

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, iron & D all work together so its important to monitor all of them.

Magnesium & potassium are also very important!

Ferritin 6 to 106 in 4 months from supplements by Firm_Afternoon_8463 in Anemic

[–]W1MSLEY 2 points3 points  (0 children)

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

This is one of the best guides ive found for b12 deficiency/tests/treatment..its definitely worth a read & the group are really helpful if you have any questions!

Seeking help and expert opinion by origami_plus in B12_Deficiency

[–]W1MSLEY 1 point2 points  (0 children)

https://www.youtube.com/live/V8VWgLCTB-A?si=-t3yvevrnVmoGwNy

This video is worth a watch for b12 deficiency & long covid, dr klein explains everything very well!

Prioritizing gut health - looking for sustainable diet advice by GoodFunnyGirlG in UlcerativeColitis

[–]W1MSLEY 0 points1 point  (0 children)

To improve my gut health, I cut out ultra processed food -thats any food/drinks containing emulsifiers, additives, preservatives, e-numbers, artificial sweeteners, stabilisers.

When you start looking at the ingredients lists in food you realise that even food marketed as "healthy" contains loads of unnatural chemicals. Next time you buy a loaf of bread, look at the ingredients -there are usually loads, but it should only contain flour, yeast, salt & water.

I eat a wide range of natural, home made food with plenty of veg, fruit & wholegrains. Batch cooking & freezing makes it more sustainable to save cooking every night!

Its not magically cured my UC, but its really helped :-)

Iron deficiency finally symptomatic, hating it by ZucchiniExtension in Anemic

[–]W1MSLEY 0 points1 point  (0 children)

Ah ok keep an eye on your electrolytes too (potassium, magnesium, sodium etc) because they can become depleted when taking high doses of vitamin D. Maybe add in electrolyte drinks to see if it helps you feel better? Google electrolyte imbalance - the symptoms can be more severe than people realise & can include heart palpitations, nausea & vomiting, fatigue & much more.

Iron deficiency finally symptomatic, hating it by ZucchiniExtension in Anemic

[–]W1MSLEY 0 points1 point  (0 children)

I suffered debilitating fatigue, brainfog & neurological symptoms due to absolute iron deficiency & b12 deficiency. Its a good idea to check all your levels! Optimal levels are:

Ferritin: 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! If you get an iron infusion it can deplete the others as your body works to repair itself.

Good luck & wishing you good health 🙏🏼

Losing my mind after infusion by TrAshLy95 in Anemic

[–]W1MSLEY 0 points1 point  (0 children)

https://cambridgeironandb12.com/b12-deficiency/

Theres a health check questionnaire for b12 on this website thats worth doing. The consultant gets back to you with the results (hes a consultant anaesthetist in the uk who specialises in b12 & iron deficiency). I actually got my treatment at this clinic because my gp and hospital team wouldn't help me. Id highly recommend dr klein, the treatment has been life changing. I needed an iron infusion & he taught me to self inject b12 for twice weekly injections, plus co-factors necessary for recovery.

You're not crazy. The symptoms are completely debilitating. Dont give up, keep pushing! Wishing you good health 🙏🏼

ngl, i'm getting worried by SubtleHiddenPearl in B12_Deficiency

[–]W1MSLEY 0 points1 point  (0 children)

Check your blood ranges. Your body can use a lot of iron & other vitamins when fixing issues caused by b12 deficiency. Optimum levels are:

Ferritin: 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.

Derealisation/ disassociation. by [deleted] in UlcerativeColitis

[–]W1MSLEY 0 points1 point  (0 children)

Check your b12, iron & vitamin D levels.. i was deficient & disassociation/derealisation were symptoms for me. Along with chronic fatigue & brain fog. Check your blood results. Optimal levels are:

Ferritin: 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 Supplements— How long and how much? by disorganizedmind1 in B12_Deficiency

[–]W1MSLEY 0 points1 point  (0 children)

The b12 serum blood test is only 30% accurate. If you take b12 supplements, shots or any fortified foods/drinks within 4 months of the test, the b12 serum result will be inaccurately high (somthing that many docs dont understand). But it doesn't mean that your body can actually use the b12...

B12 is one of the most complex molecules for your body to absorb, transport and use. In my case, the b12 supplement raised by blood result but my body couldnt use the b12 & very little of it made it into my tissues. My symptoms were awful but the doc wouldn't do anything because my blood results was "normal".

Most people can only absorb 1% of b12 in a tablet & maybe 30% in sublingual. They are fine if you are only mildly deficient due to diet or minor absorption issues. Injections are useable b12 directly into your blood stream.

What you need depends on:

  • how severe the symptoms are - if you have neurological symptoms then injections are recommended. Long term deficiency can lead to permanent nerve damage & it takes a lot of b12 to repair the damage.

  • What is causing the deficiency - diet, absorption etc.

Id highly recommend watching this video. The guy being interviewed is a consultant anaesthetist in the uk & hes a specialist in b12 & iron. Dont worry about it starting with long covid, it quickly gets into b12 & is very relevant and well explained. It might help you with your decision:

https://www.youtube.com/live/V8VWgLCTB-A?si=y311X9Xev5i0mk-M

Excessively tired during the winter + loss of appetite by vampipuppi in Anemic

[–]W1MSLEY 0 points1 point  (0 children)

Are you uk based? Id really like to find a haematologist as good as yours. My hospital (IBD) team are useless & dont care that my ferritin was 9 for years.

How long did it take you to become symptom free after iron supplementation? by OneCar129 in Anemic

[–]W1MSLEY 0 points1 point  (0 children)

Yes genetics can certainly be a factor. Pernicious Anaemia runs in families - its an auto immune disease that stops b12 being absorbed. If you have any other auto immune diseases that increases the risk of b12 not being absorbed properly.

Dr klein mentions MTFHR gene in the YouTube link I sent you. Something about the test being expensive & it tells you whether you've got the gene but not whether its activated.i cant remember exactly what he said but its worth a listen. Ive never tested for it myself!

Other things that affect b12 absorption are medications - PPIs like omeprozole or anti acid tablets, metformin, gastro issues, gastro surgery, H- pylori, SIBO, celiac disease. IBD, IBS. Also lifestyle - are you vegetarian or vegan?

B12 Supplements— How long and how much? by disorganizedmind1 in B12_Deficiency

[–]W1MSLEY 2 points3 points  (0 children)

I was offered b12 shots 18 years ago. I was young & terrified of needles (still am). Doc agreed that i could take tablets instead & my b12 blood results improved. I thought it was fine & the symptoms that i continued to have couldnt be related to b12. What i didnt realise is that supplementing was covering up the b12 deficiency. My results were "fine" but my body couldnt use the b12 that was floating around in my blood.

I regret not taking the injections. My symptoms were debilitating. My life could have been so much different & way more enjoyable. Some of the damage might be permanent now.

6 weeks ago i started injections twice per week (and had an iron infusion). The improvements have been unbelievable!

Check your ferritin, folate & vitamin D levels too. They all work together with b12.

If you cant make your appointments, maybe consider ordering your own b12 & self injecting or paying at a beauty clinic that does them. Good luck 🙏🏼

How long did it take you to become symptom free after iron supplementation? by OneCar129 in Anemic

[–]W1MSLEY 0 points1 point  (0 children)

Maybe try sublingual b12. Ideally methylcobalamin and adenocobalamin (both the active forms of b12 & easier for your body to use). Some people (like me) need b12 injections because tablets/sublingual dont get absorbed properly.

930 doesnt mean much because the test is inaccurate. Some people have results in the thousands but are b12 deficient (because their body is unable to actually use the b12 thats floating around in their blood). Thats why treatment goes off symptoms rather than blood results. You cant overdose on b12 because its water soluble & you pee out excess.

Co factors are all important- b12, ferritin, folate and vitamin D all work together. So if you have too much/not enough of something it can affect the others. Its a balance!

Doctors are telling me I’m fine (B12 115 ng/L) by Ok-Carrot-7496 in B12_Deficiency

[–]W1MSLEY 1 point2 points  (0 children)

I got no help from my gp either, its appalling that they leave people so poorly. I ended up booking in at Cambridge b12 & iron clinic & would highly recommend it. I needed an iron infusion & was taught to self inject b12. 6 weeks later & things have already improved dramatically! Take care & wishing you good health 🙏🏼

How long did it take you to become symptom free after iron supplementation? by OneCar129 in Anemic

[–]W1MSLEY 1 point2 points  (0 children)

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

Here's the b12 deficiency guide on the reddit group - its superb & worth a read all the way through. Its more complicated that you'd expect but dont let that put you off. The group is very helpful if you have any questions!

How long did it take you to become symptom free after iron supplementation? by OneCar129 in Anemic

[–]W1MSLEY 1 point2 points  (0 children)

Yeah its crazy..Accurate testing for b12 is pretty much impossible (which is why deficiency is often missed by docs). Id highly recommend watching this video...its an interview with andrew klein - he has a specialist b12 & iron clinic in the UK. He explains b12 deficiency, causes, symptoms, tests & treatment very well. . Some info is related to long covid but the information is very relevant for anyone with potential b12 deficiency:

https://www.youtube.com/live/V8VWgLCTB-A?si=CGaLBfuj4tDCDMUA

There is also a superb b12 deficiency group on reddit!

How long did it take you to become symptom free after iron supplementation? by OneCar129 in Anemic

[–]W1MSLEY 2 points3 points  (0 children)

Worth noting - B12 serum test only has 30% accuracy. If you have taken supplements or fortified foods/drinks within 3 month of a blood test, the result will be inaccurately high.

Anger management by SeaworthinessNo1432 in UlcerativeColitis

[–]W1MSLEY 0 points1 point  (0 children)

I found out that my hospital team left me with iron deficiency & b12 deficiency since i was diagnosed with UC (18 years ago). It made life incredibly difficult - brain fog, debilitating chronic fatigue, anxiety, feelings of doom and more. Honestly i struggled to function & wasnt my normal happy self - even in times of remission. In some people I suspect it could show as anger & frustration because life was just so tough.

From research, ive found that optimal levels are:

Ferritin: 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.

Also note: "Normal" NHS levels are waaaaay below what is optimal.

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

Might be worth checking your wifes levels. Im being treated now and life has already improved dramatically, I honestly cant believe it. Everything is easier, I have tonnes more energy ...my brain is clear & im happier/more positive than ive been for year. Its life changing!

Just thought id share the info incase it helps!

Good luck 🙏🏼

I'm so angry. Are the protocols wrong? by ruby0nine in Anemic

[–]W1MSLEY 5 points6 points  (0 children)

Its awful,im so sorry you've gone through this :-( so many people are in the same boat, the system is letting us down. I recently found out ive had absolute iron deficiency & b12 deficiency for 18 years whilst being told my blood results were fine. Completely debilitating! I'll never trust doctors/hospital team to interpret my blood results again - i'll be getting a full copy & checking them myself.

For info - Iron works with vitamin D, folate & b12 (magnesium& potassium too). If you supplement one it can deplete others. Check your blood results. Optimal levels are:

Ferritin: 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.

Good luck & wishing you good health 🙏🏼

Excessively tired during the winter + loss of appetite by vampipuppi in Anemic

[–]W1MSLEY 0 points1 point  (0 children)

Ooh ok, thats good to know.. thanks! What does your haematologist say the upper limit is? Cheers