Please Help - Scared & Feel Like I’m ... - Pernicious Anaemi...

Pernicious Anaemia Society
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Please Help - Scared & Feel Like I’m Dying

Pimly
Pimly

Hello,

I’m currently being investigated for Coeliac Disease.

The problems with my intestines have caused iron deficiency anaemia and folate anaemia.

I’ve been taking heavy doses of folate (35mg a week) for the last four months. It’s helped my folate deficiency but seems to have caused other problems.

I’ve been getting horrendous, painful tingling in my hands. It has spread to my feet and legs. I feel anaemic again - smothered, exhausted, weak, chest pains, barely able to move from bed. I’ve become forgetful. It’s like my brain isn’t working properly any more.

I’ve read that folate supplementation can mask or worsen a B12 deficiency. I started to take 5000ug of Solgar sublingual Methylcobalamin every day.

I’ve just had a finger-prick *active* B12 test from Medichecks and it’s at 300.

Does this mean that I’m not deficient? Or is the result affected by my supplements?

I’m terrified right now because I feel like I’m dying. Something is very, very wrong.

Can anyone please help?

19 Replies
oldestnewest

I’ve also had low vitamin D and magnesium levels. These have been treated by my GP.

I’m not sure if it’s relevant to my question, but I don’t want to forget anything helpful.

Gambit62
Gambit62Administrator

300 is a very high measure for active B12.

This may be due to the supplementation, so it is unlikely that you have a B12 absorption problem, though problems that affect absorption of folate often do affect B12 absorption.

Raised B12 levels can cause problems for some people and seems to make the mechanism that allows B12 to go from your blood to your cells less efficient.

Have you tried stopping the B12 supplementation? and have you spoken to your GP about what is happening.

Tests for a functional B12 deficiency - high B12 in blood but not enough getting through to your cells would be homocysteine and MMA.

Coeliacs does sound like a good course to pursue with the deficiencies that you have reported.

Pimly
Pimly in reply to Gambit62

Hi Gambit,

Thank you for your reply.

I was taking the Solgar supplements before my active B12 test (including 3000ug the day before).

I felt like I had no other option because, if I stop taking the supplement, the tingling in my hands becomes unbearable. As do my feelings of ‘anaemia’ (exhaustion, breathlessness, etc).

My GP is refusing to consider a B12 deficiency because my serum levels are high. It shot up from 240ng/L (on a lesser dose of supplement - the BetterYou oral spray) to 1166 (on 5000ug Solgar daily).

I stopped taking the Solgar - for approx. 5-6 months - but my levels are still at 1166! It hasn’t gone down at all.

It’s since taking the folate that the tingling/anaemia has returned and so I’ve started to take Solgar B12 again.

I don’t know what to do. It feels like I’m trapped - the tingling and anaemia symptoms are worse without supplements but, because of them, we’ll never get to the bottom of things. And, on the basis of your reply, they may actually be making things worse at a cellular level.

Gambit62
Gambit62Administrator in reply to Pimly

If the supplements helped then go back to them - my understanding from your post was that you were taking them and they were causing the problems.

If you have supplemented then you really need to go by symptoms as to what you need to check as the serum B12 and active B12 test are only going to tell you what is going on in your blood rather than in your cells and it sounds as if you now need high serum levels to get enough B12 into your cells.

Pimly
Pimly in reply to Gambit62

I’m sorry, Gambit.

I was worried that I might be unclear. My brain isn’t working properly and I’m making lots of typos, missing words... I have to re-read these posts about six times before pressing send.

My history is that I was diagnosed with an iron deficiency anaemia in 2016. At that time, my B12 was also tested. I was taking the BetterYou oral spray and my serum B12 was 340ng/L.

My GP said this was fine. Dr C at the B12d.org charity said that my true level (without supplementation) would be “under 200ng/L”.

I started to take 5000ug Solgar every day.

When I next had blood tests, my B12 was 1166ng/L. My GP told me to stop taking the Solgar.

I did, but slowly became more and more unwell. I had more blood tests in November 2018 and was diagnosed with folate anaemia. My B12 was still 1166 (even though I hadn’t supplemented for six months).

I’ve treated my folate anaemia since November but, over that time, the tingling in my hands has become horrendous. It’s spread to my feet and legs. I feel ‘anaemic’.

I only started to take my Solgar again about a month ago. It’s reducing my tingling although I’m still exhausted (it’s like a massive crash in energy, like my battery has run out)...

But I’m worried that I’ve missed the boat to get to the bottom of what’s wrong with me and get the right help.

Note: minor edit by admin

Gambit62
Gambit62Administrator in reply to Pimly

the supplementation hasn't helped in terms of medical diagnosis.

B12 isn't toxic so if the supplements help suggest you continue with them.

It is possible that if you joined and contacted the PAS they might be able to help with explaining how B12 works to your GP but the first step would be you writing to your GP - and if you are in a position to treat yourself then it might well be easier to do so.

pernicious-anaemia-society....

pernicious-anaemia-society....

and your GP might be interested in the area of the PAS website aimed at helping medical professionals improve the diagnosis and treatment of PA

pernicious-anaemia-society....

Alfabeta
Alfabeta in reply to Pimly

Although b12 is not toxic, I believe folic acid can be and it is not advised to exceed certain limits. Please check if this is a fact and maybe an administrator will confirm or deny it!

You may be suffering from nominal aphasia which may be causing your lack of fluency - I have suffered from this for years although treatment has improved the condition.

fbirder
fbirder in reply to Pimly

Dr C at the B12d.org charity said that my true level (without supplementation) would be “under 200ng/L”.

Tommyrot and balderdash.

There is no way of knowing what your levels would be without the supplements.

Pimly
Pimly in reply to fbirder

Thank you for all of your replies so far.

I’m trying to keep up the fight with my GP, but it’s getting harder. I just don’t have the physical energy to travel there.

Can I just ask? Is the current level of B12 in my blood dangerous?

The supplements do help - my tingling is much less painful, though I still feel exhausted - but I’m scared that, because my level is already 1166 (and just circulating, without reducing), it’s dangerous to have even higher levels?

fbirder
fbirder in reply to Pimly

No. There is no known dangerous level of B12. stichtingb12tekort.nl/weten...

Mx143
Mx143 in reply to Pimly

Stop taking the folate because it can mask the b12

I havelow vitamin d and it makes you feel awful . I slept most of the time,lost interest in everything and got to stage where Ihoped I wouldn’t wake. Took a long while to get my levels back up and involved taking massive amounts of vit D. I’m currently on daily supplement but finding my levels are falling. I too am awaiting results for coeliac disease as well as biopsies on stomach polyps. Plus side is weight is falling off. Down 19 lbs in just over a month and just in time for family wedding. After which I will worry if weight loss continues at that rate.

Maybe once you get current test results you should ask that vit D level is rechecked now that you are on supplement.

Hang in there and keep hassling doctors. I know I was considered hypochondriac until blood tests showed actually have a problem. What a change in doctors response to me. He actually apologised and now listens!

Pimly
Pimly in reply to Ashbe

Thank you for your help, Ashbe.

I haven’t actually had my vitamin D levels tested again. There’s been no follow-up at all.

It’d make sense if they’ve reduced again - we’re just coming out of winter and, because I’m mostly bedbound, I don’t manage to get out when there is sunshine.

I’m sorry to hear about the problems you’ve been having. Do you have any other symptoms (apart from weight loss)?

I’ve tested positive for the Coeliac Disease gene but, because I’ve developed an IgA deficiency as part of all the problems I’m having, they haven’t been able to get a ‘true’ antibody reading from my bloods.

I had, by U. S. standards, low normal B12 around 250. However, I was symptomatic - numbness in hands, feet, face, irritability, etc. My HP tested my methylmelonic acid levels which were very high, indicating that I was not absorbing B12 in my diet. With supplementation, my B12 went up to 512 and MMA dropped to normal levels. I take Jarrow 1,000 mcg sublingualy.

He also tested for intrinsic factor antibodies and parietal stuff, both were negative. Negative for celiac, too. So, the short version of all this is that you may have difficulty absorbing your supplements.

Best of luck.

Pimly
Pimly in reply to nifuarain-63

Thank you, Nifuarain.

It’s good that your doctor was proactive in arranging testing for you. I’m based in the UK and it’s like getting blood from a stone with my GP.

My folate anaemia was actually diagnosed by private blood tests. I saw my GP three times - to say that I was feeling anaemic - but he wouldn’t agree to testing. He said that I was not anaemic and suggested that, instead, I might have depression.

My folate had dropped all the way to 2!

I’m also wondering if there’s an issue with my supplements - they help enough to reduce some of my symptoms, but, mostly, seem to be stuck in my blood stream. If the B12 was being utilised correctly by my body, would my level of 1166 have gone down/reduced by now?

I know that this sounds too easy, but it worked for me. I am celiac and had a difficult time getting my iron levels up to par. Even the best iron supplements didn't work for me. Then I started eating a bowl of Whole Grain Cheerios every morning. The one in the purple box has 100 percent daily iron in it, plus B12. My iron levels went up 30 pts! My B12 levels are good. Have you had your Vit D levels checked? Mine were very low and I took 10,000 units Vit D every day per my doctor for 3 months. I still take 3000 units a day to maintain. If you haven't had your Vit D levels checked, I would recommend it. Low Vit D can really cause weird symptoms. Hope you feel better soon!

lucylocks
lucylocks in reply to dinadina

Hi

Can you eat Cheerios if you are celiac?

Yes, they are certified gluten free. At least the Whole Grain are. You need to check the box of different varieties. I don't know why my body absorbs the iron in Cheerios. It just does. 😳

I remember feeling the same way -- that something in my body was seriously out of whack. Bringing up my iron and Vit D levels made a huge difference. Back in the old days, the only treatment for pernicious anemia was to eat liver every day. Liver is very high in iron and Vit B12 and B6. I like liverwurst/braunschweiger sandwiches. Sometimes I eat that to jumpstart my energy. I'm doing very well now.

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