Very upset, need advice: Hi So in nov... - Pernicious Anaemi...

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Very upset, need advice

Sasical
Sasical
37 Replies

Hi

So in nov I had bloods done because I have not been feeling well and my B12 came back at 155. My boss who is a nurse told me I should look into that because it could be causing some of my symptoms. I brought it up with one doctor and she said it wasn't very low at to it more mussels and fortified cereals, so I went to another doc who said it was marginally low so to take a folic acid and b12 supplement.

I started to look online and found this group. So armed with all the information I found out here and since I had a neuro appointment anyway I asked her and she said it wasn't very low but because I have pins & needles to have b12 shots.

I go to my GP today and she says that the neuro hasn't written anything about b12 shots in the notes that she has written a prescription for cianocobalamin + folic acid tablets and to proceed and she (my GP) thinks is necessary. So my GP has said that is all she considers I need unless I have absortion problems which they will test in my next bloods, who knows when...

I left crying and don't know what to do. Because I have a history of anxiety I'm never taken seriously and all my symptoms are always put down to that.

Any advice pls?

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Funkyfaerie

It's always a fight with B12 Sassical.

What I would do is take the tablets for a month, don't worry nothing's going to happen.

Go back to your GP and get another blood test, if your B12 has gone up, I would say you're absorbing it, if it is the same or lower, then demand an Intrinsic antibody test. This will determine if your body is not absorbing it.

Then they will put you on injections.

A similar thing happened to me. Consultant said I needed injections, the GP said I didn't and wouldn't give them to me, it was a fight and it shouldn't have been.

Have a plan of action and stick to it, you will be fine.

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Sasical
Sasical
in reply to Funkyfaerie

Thank you so much for getting back to me, that's what I'll do. In the meantime i'm also going to try to get hold of the neuro doc see if she will speak to my GP

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Funkyfaerie
Funkyfaerie
in reply to Sasical

You just made me smile because that's exactly what I did, got them talking!

It was stress I didn't need, but it was my health I was concerned about.

It's all so frustrating.....

Keep in touch xx

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FanofB12

Funkyfaerie, not everyone with PA tests positive for intrinsic factor antibodies. Only half do. If IF antibody test is negative [i.e. normal] doesn't mean you have no PA. If there isn't enough IF left [i.e. if PA is severe] the body won't make antibodies against it any more.

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Funkyfaerie

I have PA, because IF antibodies were found in blood test. The cause of pernicious anemia is the loss of stomach cells (parietal) that make intrinsic factor. Intrinsic factor helps the body absorb vitamin B12 in the intestine. The loss of parietal cells may be due to destruction by the body's own immune system.

So any other form of deficiency then is just dietary, and a lot of people these days suffer deficiency because of bad eating habits, or being a vegan or vegetarian.

I noticed on the news they were saying about givi g vegans etc B12 Jabs. But last time I went for mine the nurse told me they are stopping giving injections to vegans and vegetarians as it is to expensive and unnecessary for the NHS, and they would have to get B12 through their diet!!

So I do understand, Just worded it wrong, I was trying to give someone some calming help. Maybe I'm not very good at it!

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Nackapan

In what range was the b12 blood test?

List your symptoms. Have bloods ruled out anything else that could be causing your symptoms. ? Don't take folic acid before you have got b12 levels raised if need be.

Anxiety is another symptom b12 deficiency. Is that worse?

Have you been given the intrinsic factor blood test or parietal cells antibody test?

So you had a referral to a neurologist. And the gp etter didn't reflect the consultation?

Ring up the hospital and question this. As if they said in person ti get Injections it should've been In the letter.

Meanwhile you can try oral tablets as you've had one blood test whilst you sort it out.

Do keep a record and when you go back take someone with you

Take care I know how difficult it is when you feeling ill

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Sasical
Sasical
in reply to Nackapan

I can't believe it, I just wrote such a long reply and it wouldn't send and my phone just deleted it.

So in short

B12...155 (180-914)

B6...20.8 (8.7-27.2)

Vit D...20.9 (30-100)

Main symptoms: difficulty walking, anxiety, (sorry if tmi) every time I need to poop sweating, tachycardia, dizzy, shortness of breath.

Physical tiredness (not mental), stiff muscles

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LynneG
LynneG
in reply to Sasical

Hi, vit D deficiency causes all sorts of issues! You need B12 with those results (I take seeking health 5000mcg methyl/adenosyl form, they are tiny and melt under your tongue. from website amrita.co.uk - I don't know what form your GP has prescribed. But you should get your B12 up high with those (the company seeking health is formulated by Dr Ben Lynch a major authority on methylation)

But your vit D certainly needs addressing. NHS will ignore as 30mmol/L is the min of the range and will not prescribe if 30. My sister had hosts of health problems and I told her , first and foremost get your vit D tested! Result 30 mmol/L her GP told her she couldn't prescribe but MUST buy and take her own supplemments. You really wouldn't want the NHS D supplement anyway. They are not dear anyway. Bottle of Natures Answer vit D3 drops costs at most £17 and lasts for 6-12 months. Easy as 2 drops under tongue provides 4000iu. With being so low you prob need to take 10,000iu per day, to get it up reasonably quickly. But you should take every day for maintenance anyway 2-4000 iu per day. Google the organisation Grass Roots Vitamin D research Council they provide tons of info inc a chart where at significant risk of different health problems dependant on D blood level. If your measurement is in mmol/L you are off the charts low. Anyone with any health problems should get there blood vit D level up to 150mmol/L min. See my other recent posts re vit D. Seriously you are putting yourself at risk with such a low serum D level - no wonder you feel bad

Vit D helps absorb calcium. So everyone , not just you, needs to take vit K2mk7 (amazon Uk brand Pure Health capsules) Vit K2 is not K1 and not to do with thinning the blood. Don't ask your GP about K2 - they havent heard of !!! only discovered in the 1990's as a separate essential vitamin. K2 is a co factor that triggers an enzyme that escorts calcium to bones and teeth. If deficient in K2 calcium will gravitate to soft tissue such as muscle and arteries. You dob't want a hardened heart muscle or hardening of the arteries! read Kate Rheaume Bleue's book, the calcium paradox - a little known vitamin that could save your life. Also there are you tube talks.

At next GP app get your GP to check your blood calcium level. may have already taken with generic tests. Rarely vit D issues are caused by the parathyroid gland and that would show up if your calcium levels are out of normal range, v high I think.

Just noticed your symptoms - my dizziness went away when I got my B12 up to well over 1000.

I don't know if you are on the govt advised low fat diet guidelines - that can cause issues as essential vits D, A, K2, E are all fat soluble vitamins. And the Guidelines of the last 50 yrs are cobblers! See the website and so the videos of British Doctors/Scientists 'Public Health Collaboration' They have just had their annual conference in Oct 2019. You can watch all their talks /presentations . Go to their website and watch the videos and learn a lot about health. These are GPs and health professionals that are telling the truth about our health issues and want the Govt to overturn the guidelines on diet and the crazy food pyramid. which advises us all but affects hospital , school dinners, nursing homes, restaurants, food outlets anywhere that provides food. The Guidelines of no/low saturated fat and use of polyunsaturated oils is literally killing us and was only brought in to provide a market for the new technology (its only market previously being machine oil) So don't eat bottled oils that line supermarket shelves. Change to butter, coconut oil, animal fats, (olive oil but don't cook with it) The polyunsaturated bottled oils are unstable and cause rampant cascading inflamation in the body. Inflammation in the body is known to be the root cause of ill health and chronic disease. So just that simple change may make you start feeling better eventually. But it does take 2 years to rid all of your weak cell walls of the polyunsaturated building blocks once changed and be replaced by integrally strong walls built of naturally saturated fatty acids. Just as was in your grandmas time and the 100,000's of years before that.

Also lastly. If you are having a problem with absorption of vitamins this could be autoimmune attack on the intestinal villi. Usually caused by eating gluten which breaks down the intestinal lining in EVERYONE but many can cope with and repair is hours . But if eating gluten every meal , there's not much chance of repair and other factors also break down the lining inc LPS from the an unbalanced microbiome (too few beneficial micro organisms to keep the bad guys incheck leading to you feeding more and more bad guys often starts with meds and antibiotics and poor sugary diet ) but stuff gets thru the broken down intestinal wall, starting allergies but more importantly and seriously autoimmune attack. So you aren't going to absorb vitamins and minerals so low in folic acid , vit D, etc is usually an indication something amiss to your GP and will test for coeliac. The tests are useless unless really bad damage has occurred. 70% false negatives. Basically 70% are waiting for the damage to get worse and worse until will record as positive. So just give up gluten and eventually all grains and see if your health improves. Lots of people do this and never look back. Remember with removing wheat and other grains you are removing instant sugar spikes in your blood. Grains digest immediately to sugar and create spikes and inflammation.

So lots of approaches when health starting to fail that should be considered. It's never just one thing, You are one whole body and what affects one organ/system has a knock on effect . Best Wishes

Best wishes

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Sasical
Sasical
in reply to LynneG

Wow, thank you so much for all that very interesting information. I wil look into it in detail. Here at home I have a bottle of Solgar VitD 1000IU should I start with that? I have also gone gluten and lactose for almot 2 weeks now to see if anything improves

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LynneG
LynneG
in reply to Sasical

Yes start with until post arrives with your natures answer drops. 1000iu is not going to make a lot of difference quickly, thats barely a maintenance dose for someone who has a good level (check they are D3 ) but that would mean at least 10 capsules a day, which is a bit much, when you ought to get up quite quickly. Drops under the tongue are always best 10,000iu is just 5 teensy weensy drops, without the rubbish of capsules - even just veg capsules if taking 10 could upset your stomach and then there's any fillers used which you can do without. Some capsules are basically plastic! I now take vit K2 in drops but don't have the name to hand but will post.

Brilliant going gluten free and cutting out dairy. I don't eat dairy but I do eat lots of butter purposely (make sure it is decent butter - grass fed herds Guernsey in gold foil sold ony in waitrose , I emailed the dairy - herds out eating grass for longer than anywhere. You can't get vit d or any prospect of health from food unless the animal is well cared for in its natural environment eating grass. Or Beurre de I'signy - states on packaging , herds fed on the salt marshes of Brittany , I get the blue packaging as unpasteurised (waitrose or sainsburys)

I cut out all grains eventually including rice but one step at a time. Just don't be sucked into eating commercial gluten free products except on the rarist occasions when out. Don't buy for yourself. They have found a market and just put the cheapest alternative stuff in to replace wheat flour. But tend to be cornflour or tapioca flour, starches. Which will also spike bood sugar as they are just starch like wheat. So just beacause says gluten free, that doesn't mean healthy. Nut flours like almond flour, are best as much more healthy / mainly protein and can replace in recipes. I have a great breadcake recipe with almond flour that if you want I can pass on. If you miss bread. Nicest bread I have ever tasted - takes 10 mins max to get in the oven and that includes washing up. Cakes , puddings, even pastry you can substitute for almond flour. You need bi carb in tho as a raising agent. And if making bread theres no yeast faffing about but you do need Psyllium husk in, if making bread. Sell at Grape tree or most health stores. Don't use cornflour /soy flour/ 99% of the worlds crops are sprayed with glyphosate (otherwise known as Roundup) inc wheat, a carcinogen and also disrupts vit D synthesis pathway . The makers were taken to the European court of justice in Paris 2017 on charges of Crimes against humanity. Do the general public ever here of! They sell Roundup in Tesco - to spray on your garden. When your health starts to fail , you gen up on this info.

Don't feel deprived, slice an organic apple with peel on ( helps heal the intestinal lining: Dr Michael Ash) put in oven proof dish, cover slightly in grated /chopped organic biona creamed coconut(comes in a block , handful of berries if you wish and a splash of water, bake at 150c for 30 mins. Melt dark choc and spoon in the apple mixture when cooked - lovely gooey pudding that is actually a super food. Wean yourself on to 70% dark choc and gradually up to 85% - Green and Blacks organic, no chemical nasties if organic. Dark Choc really good for the heart /brain- opening up blood vessels. You said anxious, I think, make sure have 2-3 organic brazil nuts per day for selenium (a neuro transmitter) Banana /Avocado for magnesium. Don't over exercise - but lots of walking at a good pace with a few mins of fast walking. if you are up to it. Creates BDNF - Brain Derived Neuro Factor (esssential for a healthy brain)

Microbiome - eat to feed it - your beneficial gut bugs, which means cutting out sugar, best you can. Also try not to take antibiotics. You can inhale and rub on oregano oil ( antibacterial, anti viral, anti fungal) (naturesupplies .co.ukwebsite - £9.99 a bottle, lasts and lasts) if go anywhere germy or feel cold/sore throat may be starting - excellent but you really need to get vit D up to get your immune system working. Oregano can't do it all on its own -oregano also needed in first aid kit for midge bites cuts etc to prevent infection passing into blood stream.

Mitochondria: thousands in most cells in your body - they produce your energy. You have to read up about as I don't know everything published. But the health of your mitochondria is paramount for your health. I use a near infra red light/ combi from red light man .co.uk. I now have the full body one. I stand in front of for 5 mins each side. Mitochondria feed on light at a specific wavelength as well as nutrients provided in your food. Read the blog info on the redlight man website. The US version is called Joov so you can also google joov and listen to interviews eg the scientist developers being interviewed by Dave Asprey . People go to Swiss clinics for the treatment. We can have at home. Pricey £720 far cheaper than joov - and hey it's Christmas. Far cheaper than seeing a private clinician . Happy Christmas xx

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Sasical
Sasical
in reply to LynneG

Wow again, thank you for all this great info, I really ppreciate it x

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LynneG
LynneG
in reply to Sasical

Sassical - Vit K2mk7 drops are Vitabay Organics (I bought from amazon - Last a long time but I presume they still sell) x

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FanofB12
FanofB12
in reply to Sasical

You should definitely get treatment with B12 if you have symptoms and value is 155. The 'oh it isn't very low' is nonsense. You have symptoms, your B12 is low, they need to treat you. Period.

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Sasical
Sasical
in reply to Nackapan

I'm thinking of paying to go privately for al tests so since this will take at least a week or more do you think I shouldn't take anything at all yet so as not to skew results?? Or should I start with a methylcobalamin spray that I have bought a.s.a.p?

Thaaaanks x

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Nackapan
Nackapan
in reply to Sasical

I would phone neurologists secretary as well. As if he/she said injectionsyou should have them.

They only have to send s message to gp. You are right the supplements will skew results for b12. Or if same b12 serum test done and you have been taking supplements you will know if you can absorb them.

If you are a meat eater and have a good diet you clearly are not able to absorb enough from food.

Is this your first b12 text or have you another reading to compare level?

Was your iron level tested and ferritin?so many symptoms overlap. The difficulty in walking though and ?balancce issues should not be ignored by your doctor.

Go by your symptoms . Make a list. Bnf guidelines . Look at other posts with links.

Od see a private gp quickly or another NHS one who should act on your present blood results and symptoms. I had blood taken and then into another room for b12 injection . I had to push.

Take care and keep going to get treatment

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Sasical
Sasical
in reply to Nackapan

My B12 last year (I have yearly blood tests) was 360.

I've been phoning the hospital where I saw the neuro on tuesday but I couldn't get through, it's one of the biggest hospitals in Spain and Social Security here is extremely overstretched and difficult to get through.

The thing is that because I have had a Sensitive Axonal Polyneuropathy due to an adverse reaction to a medication 5 years ago they are still wondering if my difficulty walking might be related to that even though my latest EMG came back as normal. That is why I have now been transferred to a neuro-muscular doctor but my appointment is not until the 17th of jan

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Sasical
Sasical
in reply to Nackapan

Thank yous so much

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Sasical
Sasical
in reply to Nackapan

And recently tingling in hands and wrists and sometimes ringing in ears

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sbadd
sbadd
in reply to Sasical

Your vit D is low, have you had thyroid tested aswell

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Sasical
Sasical
in reply to sbadd

Yes thyroid was tested and seems to be ok

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sbadd
sbadd
in reply to Sasical

As nackapan says get full iron panel tested

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westwalessupport

Make a list of your symptoms, compare them to the symptom list on the PA Society site. Take the lists to your doctor again, and overall dont forget your doctor works for you, ask questions, and tell them what you want. If you have PA and cant absorb Vit B12, then injections are the way forward. Vit D, is also important with Neuro symptoms, add a strong vit D supplement to your agender

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Sasical

Thank you!!

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Miss-guineapig

Your symptoms are just so typical and they are scary when it's all new. There are a lot of knowledgeable people on this page so you will get a lot of help and advice. The only thing I'd add is to Definately take your oral supplement for now. I buy 2000mg tablets and take 4 over the day. It sounds a high doseage but hopefully it will build your body's stores and help your symptoms. I now have injections too but still take my oral B12 everyday and 5mg folic acid every second day. Remember, you can never overdose with VitB12. It will take a good 6month before you start to feel well and it's a journey where some days you have lots of symptoms other days, you feel ok. The main symptoms I had was, an imbalance walking, as though the pavement was moving, anxiety which still comes and goes, very tired certain days and memory issues (known as brain fog by many people). Sometimes tingling to face and feet....hahaha, I could go on. But at least I didn't have a brain tumour or MS, as that's what I believed was wrong. I wish you well Sasical, and please keep us updated. Once you find a good GP, and there are some out there, you will feel more confident. Xx

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Sasical

Thank you, you are very kind and helpful, what form of B12 do you take because I have bought a methylcobalamin spray and it seems to be giving me anxiety

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Miss-guineapig

I buy from 'healthspan' vitamin B12 1000ug, I also buy their multivitamins and I meant to include that I buy super strength Viamin D3, 25ug. The folic acid 5mg is prescribed from my GP. If you google healthspan you will find them all. X

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Miss-guineapig

Also anxiety takes a while to resolve, I am still troubled at times but much much better than how I initially felt xx

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lilymg

How old are you..if your below 55yrs of age your B12 levels should be 200-300 if over 55yrs 500-900. Certain meds block absorption of B12 such as PPI's and metformin. If absorption is being blocked in your case then you should have 3 monthly B12 injections...

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Cherylclaire
CherylclaireForum Support
in reply to lilymg

lilymg : The ranges you have given above are not ranges that I recognise from UK blood test results, and there is no unit of measurement given (B12 can be measured in either pmol/L or ng/L ).

Although ranges vary from one lab to another, I have never seen this division of age-groups mentioned.

My blood test results for serum B12 have a range of 197 - 771 ng/L, and a measurable top level of 2000ng/L. I know this because when I was diagnosed with B12 deficiency, early in 2016, my level was 196 ng/L and after injections, was always above 2000 ng/L. My GP stopped testing my B12 nine months later -at which point I was started again with reloading injections as the 3-month regime wasn't working at all for me.

Sasical : We are all different and this alone can often makes diagnosis a long drawn-out process. Many GPs do not have much expertise in the area of vitamin deficiency, and do not realise quite how difficult this is going to be. Some of the tests used for determining whether you have Pernicious Anaemia or not are unreliable.

There is new research in the pipeline that I'm hoping will eventually make this whole process a more satisfactory one for us and for GPs, both in diagnosis and in treatment.

Although you are not in the UK, you may find useful information on the Pernicious Anaemia Society website, particularly the symptoms list which is far more comprehensive than the information GPs seem to be taught. It might help you to see that anxiety is a common symptom, although you have some complex problems and so anxiety would be an unsurprising result. I hope this makes you a bit less worried. Good luck.

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Sasical

Yes it does, thank you so much!

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fbirder
fbirder
in reply to lilymg

That is nonsense.

Less than 5% of normal people have B12 levels over 500.

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Sasical

I'm 47, the meds I take are gabapentin and Mirtazapine.

How strange I took the oral spray a while ago and as I was reading something on my phone I jut had this amazing (and scary) head rush that lasted a second and then I felt more awake, how strange.

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pejka62

Do what ever you have to to get shot right away. My reading on B12 was 211 and I had nerve damage in my legs and muscle wasting. I got a prescription for 52 shots weekly from my doctor which I gave to myself--that was 3 years ago and I'm about 60% better but probably will never regain 100% By the way, I fired my first doctor because she was going to give me one shot and that was it.

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Sasical

I know the message is intended so that I get help asap so that I don't have any permanent damage but due to my anxiety I am now in a state of utter panic that unless I get a shot now I will end up in a wheelchair for life.

Please please can someone reassure me as now I I don't know any longer if my symptoms are from B12 defficiency or sheer panic

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CW12

Wow you are extremely low! You most likely need injections. I was 230 and going back for loading doses

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Nackapan

All you can do is what you are doing already. You probably have been deficient for some time. The main thing is you are starting b12 in the form you have. So try if you can or do what you can to stay as calm as possible.

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Sasical
Sasical
in reply to Nackapan

Thank you!

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