So apparently I am borderline but feel awful

[corinne288]

Hello...

I hope you can help me. I am not really sure where to start but hoping for some advice as my GP doesn't seem to understand.

Firstly I have been quite symptomatic the past 3 weeks and I am currently signed off of work. I am a general nurse but this situation is baffling to me.

First of all I started to notice some weight loss which was welcomed and not drastic. I also felt really shattered but have changed job and moved house so I expected that as a consequence. I also have suffered IBS but have been having diarrhea on numerous occasions in past 6 months even though I follow a balanced diet of veg and protein.

However, the past few weeks I have Been really struggling. I first started to feel quite light headed and like a fuzzy drunk feeling in my head. At first it was every few hours then it increased to most of the time. I also found it a struggle with my eyesight and often feel blurred vision or a struggle to adapt to lights at night. I was sitting watching TV quite relaxed and suddenly I felt like my heart skipped a beat and I became light headed. I got really scared and decided to go to the gp. I ended up having to go to out of hours and they referred me for bloods but had me complete different tests. I could not walk in a straight line as I was losing my balance. This was very frustrating. I also started to get numbness and heaviness in my hands and right arm. Getting to sleep at night is difficult although after I sleep I still feel like I need more.

Anyways my mood has been low and I have been diagnosed with depression previously.... but the way I am feeling I could see it rearing it's head again and I was really feeling sorry for myself.

The gp diagnosed an inner ear infection and I started treatment but the dizziness and fuzzy head didn't lift. I got my ear syringed but the nurse said she didn't see that would be a reason for the way I was feeling. They diagnosed sinusitis but that nasal spray did nothing either.

Today my bloods came back and are fine except my B12 is 158 and they say this is borderline but I am so symptomatic which concerns me if this is not really a problem yet at this level.

I am really struggling as I feel so low and weak yet no one seems to understand It x

Does this sound familiar ?

thanks for advice and taking time to read this essay Haha. I am 31 and feel like a dark cloud is over me x

[Marz]

Oh dear ! I am so sorry you have such poor Doctors. I would like to use stronger language. Do they not know that a result under 500 can cause neurological issues - some of which are serious. Only 20% of the result you had is reaching the cells where it is needed - as some of the B12 is bound and some unbound. So your result is very poor I'm sorry to say. Do these Docs also have borderline pregnant women too ?

You should be treated by your symptoms and in my non-medical opinion you need loading doses every other day until your symptoms improve. There are guidelines which the Doctors SHOULD have read.... see below.

bcshguidelines.com/document...

I think it is also VERY important they try to find the reason for your low B12 - stomach issues ? - low acid ? - PA. They should test you for Intrinsic Factor Anti-bodies and Parietal Cell anti-bodies. Also your Folate - Ferritin - Iron - VitD should also be tested. Low B12 is implicated in so much illness - including low mood.

b12deficiency.info/signs-an...

The link above should give you enough information to return to your Docs and ask for more testing. High Homocysteine can be indicative of LOW B12.

Have you been tested for Thyroid ?

Sorry I am not a medical person but have learnt the hard way ! You can click onto my name and read my Edited Profile. I have learnt so much from others both here and on Thyroid UK. There are lots of amazingly knowledgeable people on this forum - who will be along soon to help you.

Wishing you good health VERY soon !

[corinne288 in reply to Marz]

Can I firstly take the time to thank you for your message. I will most definitely look into this further as I have a telephone consultation on Friday with the gp due to this result. On Friday 😕. I have to suffer the rest of this week at least. I am also back to work today as I can't afford to be off unpaid so feeling rather low for today. 4 weeks of dizziness and not a single improvement.

Thank you for your advice

I will most certainly get equipped with knowledge to be asking the right questions x thanks so much for your time x

[Marz in reply to corinne288]

Hope all goes well for you....maybe it would be a good idea to write a polite letter to your GP - copy in the Practice Manager - with details of the Guidelines for Folate and B12 Deficiency ( I linked the website earlier ) I believe there is a sample letter on the website also. On the phone he will not be able to see the links - so best ensure he sees them by sending them to him prior to your phone appointment. Just an idea - otherwise I feel he will be diagnosing you by looking at his computer screen and not a lot else.

Medicine used to be an art as well as a science ! The art of diagnosis Visual signs and symptoms - clinical symptoms - are mentioned in the FIRST line of the Guidelines I gave you - and patients must be treated for them. Your GP has failed to do this.

Good luck !

[corinne288 in reply to Marz]

Thank you for this. I will most definitely do this.

Thanks again

[Marz in reply to corinne288]

b12deficiency.info/b12-writ...

M

[corinne288 in reply to Marz]

fantastic thanks

[Vicki-s]

I know exactly how you feel! I was exactly the same but with a banging constant headache too. Luckily my dr was brilliant and suspected B12 straight away... My result was 217 higher than yours!! I then got tested for pernicious anemia and that was positive so also got a reason as to why I have B12 deficiancy. He started me on 6 loading injections straight away (I'm half way through) then I will have 1 every 3 months for life. I strongly suggest you see you another dr and ask for B12. You could be damaging your nerves which is sometimes irreversible. I have learnt so much from this site don't be afraid to ask. Please let us know how you get on.

[corinne288 in reply to Vicki-s]

Again thank you so much for taking the time to respond to me. I am sorry you have suffered this too

I wouldn't wish these symptoms on anyone. Really hope your on the mend and so glad you had a decent gp.

I will let you know how I get On and thank you again for you are info x thanks

[19191919]

It seems scarily familiar. I would go back to my GP and explain all of this and ask for help. The count is only a guide - says that in NICE. That blurry vision is no good for driving. The dizziness is awful. Dont wait for it all to get worse x Good luck and good health x

[corinne288 in reply to 19191919]

Much appreciated I will not be accepting this lying down that it is just borderline. I will change GP if that is the case x

[corinne288]

Thanks for all your responses it has given me the confidence to contact my GP today and ask for a consultation today. I have been off work with this and been symptomatic of dizziness and palpitations for one month now with no diagnosis or treatment to help me recover. I called the GP and stated I am going back to work today feeling as bad as I did when I was signed off and that is not acceptable. I have an appointment this morning. Will keep you posted ☺

[BethattheBeach]

Your symptoms sound really quite serious. I found providing a really comprehensive list of my symptoms helped a great deal and I think your list would be much more serious and hard for the doctor to ignore. Add the effect on your occupation, too.

I was expected to cope with the 3 monthly injection but after being really specific about my body the GP could understand that I was serious. She agreed that I was able to self inject - just asked to see the meds at next appointment and I will still receive the 3 monthly from her. Dr also wanted me to bring a list of what I really wanted at the end of treatment - my aims. Being calm and having an advocate really worked. For example, my husband was able to confirm that I was not always clumsy. Dr asked to keep my list and together we will be monitoring my progress.

Don't give up - get organised and have in mind what you want by way of treatment. Good luck!

[clivealive Forum Support]

Hi Corinne288

You are the same age as I was when diagnosed with P.A. but in my case the reason was due to stomach surgery at the age of 17.

However, the symptoms you describe very much mirror those I had before diagnosis and which I summed up in one word "Zombie".

I am no medical expert and the reasons for your low B12 levels may be many and varied and need to be investigated but my Cytamen injections every four weeks for the past 43 years have mostly kept my P.A. symptoms in check and I'm still "clivealive" at the age of 74.

I wish you well for the future.

[corinne288 in reply to clivealive]

thanks for taking the time to share. I did have campylobactor last year and I am wondering if this was some sort of after affect? I am unsure. Had IBS since I was about 14 so I have always had digestive issues I think. Bowel problems and stomach issues are a family problem.

Glad to hear you are able to function properly with these jabs x hope that will be me soon in a few months x

[fbirder in reply to corinne288]

If you've had stomach problems for a while I presume you've had a gastroscopy. If so, was there any sign of gastric atrophy? That can cause IBS-like symptoms and would be responsible for low B12.

Has your doctor tested for antibodies to Gastric Parietal Cells or to Intrinsic Factor (the latter is recommended over the former by NICE)? Although false negatives aren't unusual a positive will be taken by your doctor as a sure sign of Pernicious Anaemia.

I reckon they feel much more comfortable to treat the B12 deficiiency if they have a nice test result that shows them there's a concrete reason for it. Even though we all know that there are other possible causes.

[corinne288]

I have had none of these. I controlled ibs with diet and I am not so bad but I have diarrhea often and also flatulence. learned to live with that. Last year it was food poisoning...

The rest I can live with but the dizziness 😣 I can't

[Hidden]

It sounds as though you have a gut problem which has led to the diarrhoea, which has led to nutrient absorbtion problems which has, over six months, brought you to near collapse.

Has celiac been excluded with a test? That's the obvious first one to exclude.

H pylori excluded?

Serum gastrin tested to see if you might have atrophic gastritis?

Serum ferritin measured?

SIBO excluded?

I think that might be a direction worth considering pursuing.

[fbirder in reply to Hidden]

Yup. After my diagnosis I had bouts of diarrhoea (normally striking at around 03:00, which wasn't good. My research suggested that gastric atrophy could have been responsible and that it would not be surprising as I'd tested positive for gastric parietal cell (anti-GPC) antibodies.

Gastric atrophy causes a loss of Intrinsic Factor (needed for dietary B12 to be absorbed) and also a lack of hydrochloric acid (required for proper digestion, especially of proteins).

I started drinking lime juice with each meal, which helped a lot, then switched to Betaine HCl capsules. Since then I've had no problems with diarrhoea at all.

I'd definitely get checked for hypergastrinaemia with a blood test for serum gastrin.

[corinne288]

Hello everyone

so been to the doctor and I start treatment tomorrow and we are having further blood tests before I start the treatment. This is to see if it is auto Immune or not. I am also going to request that they have me tested for caeliacs and see how I go from there.

Thanks to everyone for your time and advice. I start with weekly vit b 12 shots then 3 monthly after three months. Hopefully start to notice a difference x

[Marz in reply to corinne288]

Glad you are starting your treatment tomorrow. If you scroll down to Page 8 of the Guidelines I posted in my first reply - you will see that where neurological symptoms are involved - the loading dose treatment should be injections three times a week for two weeks.

Years ago the B12 injections were allowed monthly - then bi-monthly and now three monthly. If it is about saving money then it is a scandal. I live in Crete and can buy them OTC for a few euro - complete with syringes.

We have a holiday studio so you can book anytime and stock up !!

[corinne288 in reply to Marz]

Thank you Haha I will speak to them tomorrow and hope they listen x haha sounds fab about create x very jealous

[Hidihi in reply to Marz]

Marz. you have an opportunity for a little sideline business there - supplying ppl in the UK with b12. i'm sure you'd be inundated. btw, can u get 'Hydroxycobalamin' OTC in Greece as well as the CyanoC.

[Marz in reply to Hidihi]

I can get both. The Cyanocobalamin contains Folic Acid and some other B's I believe. I use Hydroxycobalamin.... Can also buy my Thyroid meds OTC too. Lots of things about Greece are good - we keep our own Medical records and go to any Specialist we want - they are just a phone-call away and can be seen almost immediately. Privately - but AFFORDABLE. I do not have Private Insurance. No standing on ceremony - and you come away with scan results....and collect blood results within a couple of days. None of this silence - and we will send the results to your GP. No wonder GP clinics are overworked.

For me it works - perhaps it wouldn't for others.....I have always been satisfied with the system. Have even had surgery here on the NHS - now that is a story !! It somehow feels as if you are in control and taking responsibility for your health. Of course you hear the usual horror stories as well.......

[Hidihi in reply to Marz]

Hi Marz. that sounds so advanced, clear cut, empowering & practical too. feels like none of this ''deference, ego massaging, Dr knows best barriers''. how refreshing?

the waiting list in the UK have gone from a few months to a minimum of 8-10 months. GP's are not referring on either, unless pushed. the now err on the side of the 'Practice Bank Balance Sheet'. quite worrying as GP's were just 'gate keepers' up until the health reforms 5 yrs ago.

think the advantages of the climate & system in Greece outweigh UK living presently. good luck with the b12 management.

HH.

[Marz in reply to Hidihi]

We retired here in 2004 - so we are getting on a bit ! Now we are having to deal with all the new regulations and general clamping down which even Lawyers/Accountants are finding difficult to keep up with. Laws keep changing every day - the government is desperate and of course we Northern Europeans are easy targets....we just pay up. We have all had to legalise our properties at great expense - pay all sorts of luxury taxes for having a pool even though we paid a supposedly one off luxury tax when we had it built - and so it goes on. We find it difficult and seem to be always fighting someone....

But hey - the balance sheet says there are lots of good things too. A litre of good wine when eating out is around 6 euro - with free tapas type starters and puds to die for ! And yes of course the sun is FREE

Yes B12 has made a difference to my life - just wish they had told me 42 years ago when my Terminal Ileum was removed with Ileo-Caecal TB..... so am playing catch-up with a smile !

[Hidihi in reply to Marz]

wow Marz, that sounds ever so precarious. it must be very difficult for the indigenous ppl to have to adjust to all these imposed changes. it sounds like a state of 'permanent' uncertainty. it must be v. challenging for you all. gosh my heart goes out to one and all.

as you're probably aware our media is rather skewed in its reporting - either extreme life or right wing (for sensationalism/demonization purposes). we don't, therefore, get a true picture of exactly what's happening in Greece.

plsd. you have your b12 well in hand. yes, it would have been great if 'the powers that b'e were sufficiently informed @ the time of your op. however, now that you have experienced b12 induced 'down' times, you can now justifiably & thoroughly indulge the 'good times'. hope u have a lot of fun doing same.

HH.

[deniseinmilden in reply to Marz]

Wow!

[Hidihi in reply to corinne288]

Hi Corrine. been following your stream. i'm absolutely DELIGHTED to hear that you're being treated for b12d - brilliant work on your behalf. well done you.

btw, once i had my loading doses & my Folate levels corrected, not only did my palpitations, frightening chest pain , IBS and whole lot of other symptoms disappear, but also my confidence improved. i was able to articulate what i was feeling, clearly explain my symptoms and be a lot more assertive with my GP. i'm sure , or at least hope, similar will happen for u. do make sure your Folate is at the upper levels though. when i addressed my low Folate levels, it was like someone switched the light on fro me.

all good luck with treatment.

HH

[corinne288 in reply to Hidihi]

thanks so much. It is such a relief that he took me serious and has at least decided to give me the medication although it is once weekly for the moment and I believe it should be more considering my symptoms but having read other people's stories I am just happy to have this for now. I hope it takes affect soon x Thank you to everyone for your support and knowledge. I wouldn't have known any of this without you all. ❤

[Hidihi in reply to corinne288]

Hi Corinne. you've successfully taken the first, most difficult & most important step in the RIGHT direction. you'll have the diagnosis on your records. you'll have a baseline from which to proceed. you'll have 'records' that'll correlate symptoms with b12 depletion. the Medics will now be obliged to find out exactly WHY you've presented with the deficiency symptoms. hopefully the GP will refer you to a Neurologist/Haematologist/Gastroenterologist. yes, you should be treated as per NICE guidelines & BCSH protocols for your neurological symptoms.

as you've probably gathered from the posts, the deficiency cause could be anything from Coeliac to Helicobacter Pylori, to PA or/and a host of contributory factors. most can be addressed. from your posts, it feels that there may possibly be a hereditary 'digestive' (mal-absorption) susceptibility going on, that when unearthed can be remedied.

don't worry too much re the number of injections for the moment. if, having tried all standard routes the Medics don't give you enough injections (which is unlikely) u can always ''top up'' yourself if needs must. you're a Nurse so PRN subcut injections are easy. however, it's best to push for as much input from the Specialist as possible.

i've had to self-medicate, like many on here. it's no problem for me, just similar to what Insulin dependent ppl have to do.

when u have regained some energy, a great book to read is ''Could It Be B 12'' by Sally Pacholok & Dr Jeffrey J Stuart.

meantime take good care of yourself. keep the pressure/momentum up with the GP. the most difficult bit is behind you now.

HH

[corinne288]

Thank you once again for your advice. I hope I can get to the bottom of what has caused this so I can at least try to avoid the foods that is causing me such symptoms. I am getting the test tomorrow prior to starting the treatment to see if this is auto Immune or not. I guess that will lead to more questions?.

Thank you again for your support 😊

[corinne288]

quick update had my first loading injection of 1000 Hydroxycobalamin injection today and my next is a week today and will continue for a month. What a stingy injection it was lol. I am starting to question if my IBS diagnosis at 15 is misdiagnosed and I may have celiacs. I am considering changing my diet incase as that won't help much either I presume.

[illnesswhatillness]

You need the active form of vitamin b12 ( methylcobalamin ) . Holland and barrett sell one called B12 Boost spray . You can also get methylcobalamin on line - just google it - don`t forget to put it under your tongue . You might want to add in some blackstrap molasses which contains vitamin b6 , iron and trimethylglycine which binds to homoscysteine and helps you to expel it . Trimethylglycine is also found in beetroot . As b12 levels drop , homocysteine starts to build up in your system and will eventually cause Lewy Bodies , which is a sort of sludge to build up on neural connections which will lead to dementia . Homocysteine exits the body using vitamin pathways of B12 , B6 folate and choline . I personally think getting your folates from raw cabbage and kale etc is best because raw folates in the form of fresh veg has an enzyme which is helpful for digestion . Lecithin is a good source of choline . Japanese seaweeds ( just google it ) can be very good sources of vitamin b12 . Give it a month or so and juice some beetroot . I think you will start to feel more clear headed . Co enzyme Q10 helps to keep your heart healthy and helps with digestion and absorption of vitamins . Add in some omega 3 and you should feel much better . Good Wishes from Illnesswhatillness

[corinne288]

Very much appreciated 😊 Will do.xx