Hi im new , would appreciate your advice x

Hi i been ill really bad last ten years but now looking back and understanding think have been my whole life.

My nan had pa and died last year after dementia tgen heart attack πŸ˜”

I have right sided facial weakness and whole if my right side been told its spasms on mri scan hut looks like a pulsy. I have tinitus, easy bruising, itritable, depressed, anxiety, un sociable, pale, hair loss black outs, dizzy, bad curculation, extreme fatigue tiered, foggy thinking, confusion, booated belly and allergies , constipation loads i just cant function normally...

I went to doctors after seeing homeopath at the begining because first specialist didnt help. She took out food if my diet i wast better but belly not as bad so i confusd doctors as i kept saying anout food i couldnt eat. It did get alot worse after lots if antibiotics and a stress...

In my journey i found my adrenals are bad bit the doc i saw sidnt know why ive been driving tge car with the brakes on is how i explain it and knackered my adenals so have low cortisol symptoms too

But i think pa must be tge underlying reason i have to have stimulants to try function but make me worse

Im under a specialist who had me test for MFTHR anyone heard of it? Apparently affects how you use b12 and i do have a gene for it... they are trying to say i have bacterial over growth aswell causing it and keep putting me on diet no carbs meat and veg but i have toddler and its too hard and i feel more dizzy and sick when i try it...

But if my nan had pa tgen surley this would be why i have b12 problems i think tge diet just helps a symptom a bit but to hard to do now i have baby on my own...

And before tgey knew about MFTHR they must have treated people with injections ...?? And from what ive read its very hard to diagnose pa as tests arent conclusive

So im being told i have to see dietian which is hundreds of pounds folow extreme diet and pay for loads of tests

If it is mfthr that will get me better but im so ill i need to be able to function to do what i want to with my son and not be so tiered etc and just to have a normal life again

I keep having lots of coffee to try and gunction but i think get low lood sugar or something as makes me even worse later on

Thankyou

Mand

44 Replies

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  • It does sound a bit like PA It would do you no harm to ne treated for it . Also having the bloating links to PA . I have PA , but do not suffer from it anymore . It's so difficult to get the right treatment . I had to go privately to get my diagnosis ( also difficult ) A gastroenterologist told me that PA patients have no or low stomach acid Achlorhydria or Hypochlorhydria ) There is no treatment for this with the NHS . It means that the stomach flora / good bacteria is diminished so you get bloating ,stomach pain and constipation or diarrhoea. After lots of experimentation I cured myself of this , using a probiotic called SYMPROVE for about 4 months . It is expensive . I weaned myself off it and found I was OK without it , but I maintain myself with a portion of RAW ORGANIC SAUERKRAUT. Every day . You can buy it in health food shops or online. I make my own with red organic cabbage . ( recipe online ) I also chop in some onion to make it really tasty. You must not heat it as this destroys some of the probiotics . Maybe one could treat oneself with just the sauerkraut . ? I don't know , but it's worth a try . I have to self inject with B12 , as the bog standard one every 3 months is useless for me and the GP treated me badly when I asked for more. "B12 is toxic ( it's NOT!) you are imagining the symptoms (I wasn't) " etc

    You should be able to get the test for PA. from your doctor it's a test for the antibodies to the intrinsic factor . It is very unreliable unfortunately . You can test negative and still gave PA . Luckily I tested positive . That is conclusive proof of PA .

    You have done the best thing , coming to this forum . You need to read up on it as well . Ourchairman Martin Hooper has written books on the subject (Amazon ) There are some marvellous knowledgeable people on this forum , much better than me to advise you . Don't get depressed . You will get some more replies I know. Very best wishes to you . You must get well for your child and of course for yourself as well !

  • Hi thankyou so much for your reply ...

    Sorry you have had problems too. Yes the sibo diagnosis is a bit hard to brlieve as no test and i think is a symptom of it.

    Im worried about the mfthr as apparently makes u store synthetic folic acid as a toxin ? But alsi reas that will happen uf not enough b12... si iver whelming.

    What do u think is best test for pa ?

    I will try your probitic if it works its eorth it thankyou .

    I have tried hcl for stomache acid and tolerate quite a few so maybe that is the problem...

    I want to get fiagnosed properly to make sure my son is pl and some family members have it i think ...

    Im hoping my face will get better maybe be permememt i suppose if is b12 πŸ˜’

    Thankyou good luck yes i will try your siggestions and need to di donething as im going round in circles

    I had a fit aswell at the begining

    Of getting really sick or some sort of black out / convulsion .... crazy isnt it try to just get better and pit it behinde me but not got hundreds of pounds to see nutritionists and do tests etc

    Thanks x

  • I'm sure they you can get good nutritional advice online for free . I did consult a nutritionist / diatician once at a cost of Β£100 and she didn't tell me anything I didn't know from what I had already gleaned from the Internet. But in the beginning I didn't know about the PAS ,which was a shame . You do know about it so you are already on your way!

  • Thanks wedgewood

    X yes ive spent ten years searching fir an answer just want my life back makes sense its something that has faulse negive testing and the hcl...

    Thanks again glad u better now

  • First of all, you need to get tested to see if you have a B12 deficiency. That means a blood test from your doctor. You could also ask for a MMA test (methylmalonic acid is a substance used up in one of the reactions mediated by B12 - low B12 means MMA builds up in the blood). Get your folate and ferritin (iron) levels tested at the same time as well as thyroid function.

    Get the results and post them here (with units - like nmol/L - and the 'normal' range - 120-599 - for example).

    If you do have a B12 deficiency then the doc should investigate the cause, but we can get to that later.

    When you say you have the MTHFR gene - so does everybody. However, some people have a slight error in the gene. If you only have one copy of the error (called heterozygous) then it's fairly inconsequential. If you have two copies (homozygous - like me) then it means that you may find a benefit from taking methylfolate pills.

  • MTHFR variants affect the ability to methylate mainly folate (B9) - they don't stop it just mean that it isn't as efficient.

    You may find this sight useful - I think its a pretty fair introduction to MTHFR and doesn't push methylated forms which a lot do without really thinking - there are a couple of genetic factors that I'm aware of that might make methylated forms not the best to be taking but the reality is that even people with MTHFR don't necessarily find that methyl folate or methylB12 are the best forms for them so a lot more going on.

    There are a lot of myths about MTHFR and how it works out there. I've never come across it making folic acid into a toxin. The body just doesn't store folate (folic acid is one form) anyway - just takes what it needs from your blood so as long as there is enough in your blood ... food is the best source of folate and that means vegetables as suggested by the dietician. There was a study showing that feeding enormous amounts of folic acid to mice can cause the process governed by the MTHFR gene to become less efficient but there hasn't bee a study of a similar effect in humans.

    mthfrsupport.com.au/what-is...

    Although lack of B12 in your diet (vegan or very little meat/fish/dairy) will cause a deficiency the body is actually very efficient at processing B12 from food so it is much more likely that a deficiency is caused by a problem with this processing - which is mainly focused on the ileum. PA is one possible cause of a B12 absorption problem but there are others. Unfortunately the test for PA isn't the best in the world and gives false negatives about 50% of the time so not conclusive evidence that you don't have PA.

    The test suggested by fbirder is one that is good for evaluating if there is an underlying B12 deficiency as it is looking at a waste product that builds up if there isn't enough B12 available at the cell level to recycle it into a useful building block - so that is a good starting block.

  • Ive got a c776t double mfthr gene ... i have candida or soething to do witg absorbtion maybe in my gut so i try avoidyeast glouten etc but when i was pregnant i craved. Beef burgers kept cheating and my blood test cMe back i needed injections went to the doctor but next doctor said i dont need them!

    My mum also has problems and has just een tood she needs injections only difference is i do this cNdida diet but its too hard to keep doing x

  • Ive got a c776t double mfthr gene

    That's the same as me.

    The MTHFR gene does one thing - it tells the body how to make an enzyme also called MTHFR. This enzyme does one thing - it facilitates the reaction at the end of the process that converts other types of folate into methylfolate - which is the stuff needed to methylate B12.

    People like us can still make that enzyme, but it's not as good as the normal enzyme and degrades faster. That means it's only about 30% as efficient as proper MTHFR enzyme.

    However, the body has tricks it can play (like making more of the enzyme) to compensate for that.

    But some people with two 677C>T mutations might benefit from taking methylfolate (also called metafolin) supplements.

  • Hi

    Yes i have methofolate and seeking health b12 but when i took them i felt worse. Also b-minus b vitamins .

    I went on amy yasko site and they aaid to do hair kineral test as i have other genes which means i may be low in lithiam so when i take it my lithiam goes lower ... but bearing in mind i e spent all this koney and i iust feel like its a never ending goose chase !

    What dis nhs do before mfthr like my nan they gave injections.

    Its all to overwhelming and in supposed to eat iust meat and beg nothing else with a very active toddler no car no money ... its just not dureable and im getting worse and worse ...i cant function even if i had the oppprtunity to go out i have a face thats wonky i have bad mood swings i black out so cant have a social drink i cNt eat ... its just to much for any human eapecialliy after ten years of searching and being aftaid of what to eat etc and being so poorly . I used to ne a gym instructir i cant excersise i cNt move for dayss even just a little if i have tried as so depressed miss doing it...

    Aorry going on i iust needed to know why i cant have injections i need help jow i have not got money to to see anyone amd just feel like its too complicated .

    I been told i have pots , bacterial overgrowth, mfthr lowish thyroid , adrenal low cortisol possible eds ...

    Only thing i have had positive teat for is mfthr and candida and low ish thyroid. But from what i can make out b12 or pa would cause low thyroid low adrenals maybe candida... pots is die to my bo dropping when i atand but it does that in low cortisol hypodrenal...

    I juat want my life back 😩

    Xx

  • Thankyou

    Yes, i saw a nutritionist after being told to test for it and had a double gene.

    She got me to buy design for health b12 minus and a methafolate and b complex with out folic acid

    I started to take them but went down hill over a few eeeks very anxious and depressed so im confuses i cant be like that withba baby .

    I hadnt had tests of my folate maybe i disnt need the folate.

    I spent 200 on supplements and to scared if to take them.

    I have alot of bloating constipation and tgis got very bad after an operation stress and antibiotics so tgey are saying i have bacterial over growth despite no positive test and i wont get better unless i do no carbs just meat and veg

    But those ate symptoms of b12 from what i have tead and now i know tge symptoms i know i was suffering even at school mottled skin, depression wanting to eat chocolate oftern constipation and my nan had pernicous anemia and my symptoms all mirror hers.

    If i eat i get full ti quickly and constipated and a massive belly ...

    So maybe my nan had mfthr but if injections help cant i just have thise or maybe i have pernicous anemia

    Does that make sense πŸ˜”

    Im having b12 on tuesday but no folic acid i will ask them to do it

    I have had saliva cortisol and im low in tge morning then high at night but that was shortly after giving birth so i need a new test

    Maybe the b12 problem is straining my adrenals or i need steroids aswell i dont know but to be so ill and have facial weakness too is just to much! And worry aboit my baby

    My face and right side hets worse after i go for a wee or number twos as if im loosinh too much of something then i get confused, anxious face and right side gets worse

    Sorry im confusing x

  • an overgrowth of bacteria - which could be h pylori - will not help with absorbing B12.

    some don't people don't take well to methylated forms - probably another genetic variant and results in the sort of symptoms you describe. Talk to your doctor about these symptoms You might actually be better of avoiding methylcobalamin and taking hydroxocobalamin instead.

    There does appear to be some relationship between B12 problems and cortisol problems in some people but not looked into the research.

    When you say you are having B12 on Tuesday is that methyl from the nutritionaist or hydroxo from the doctor?

    As Foggyme says - you should probably not have been taken off B12 shots - high levels after you have been receiving shots don't mean anything - just low serum results. Getting hold of the test results would be very useful as it would be useful to know where you actually were in relation to normal range when the shots were stopped.

  • Sorry ive confused you ive never had shots ive never had b12. Only in b complex or at times ive tried it.

    Amy yasko site said about hyplori would the antibiotics of causes that in hospital?

    I have comt and ao e others on there they said i need hair mineral test to see about lithiam maybe why i not tolerating the b12

    As lithiam going liw affecting my depression etc they said about h ployri on there but so complicated i just sisnt know what to think.

    Nhs told me about it but all cost money but cant help they are just aeeing me for bacterial over growth but not poaitive ibe had anyibiotics amd neen told to do diet but i get auch bad headache and if i dont eat bery regular on it feel like im going to collapse i cant risk it with a toddler and again so expensive... nhs refering me for pots for low bp sropa when atand up which is really low cortisol i think but they wont almoqlesge sliva teats. My cortisol is normal at 3 pm and i can feel that reflect in my mood so it must be true

    Tuesday im just having b12 tests

    My facial weakness or spasm on mri but my face looks puffy and lower different on one side gets worse after i go toolet i also get very loud ringing in my ears im nearly deaf from it , confusion, anxious and face worse

    Whem ive tries to have alchohol i black out . Ten years ago when i first got bery sick i woke up at my friends after having a few drinks wven though wasnt well had massive hard belly etc was new years eve. After i stayed at hers got ip to go for a wee poured with sweat colloapsed kept coming to vouple of times had been banging my face on the toilet , face was bleeding ...

    I have been on low dose ateroid via doc peatfield tgey did help if i did no carb diet but wasnt the whole picture so maybe it was juat masking pa or i need both ...

    I could write a book its been such a horrific journey ...

    Im so deaperate to get better in the morning im so dizzy caffine makes me worse but im so tiered and my little boy wakea me up at six or even earlier i have to be with it x

  • I have comt and ao e others on there they said i need hair mineral test

    Testing hair for mineral deficiencies is not very accurate - Here's what the Journal of the American Medical Association said about it - ncbi.nlm.nih.gov/pubmed/402...

    "Literature from most of the laboratories suggested that their reports were useful in managing a wide variety of diseases and supposed nutrient imbalances. However, commercial use of hair analysis in this manner is unscientific, economically wasteful, and probably illegal."

  • Hello

    Yes i eat eggs, meat fish so it dont make sense...

    thankyou

    Maybe i should ask fir that acid test aswell tomorrow

    Xx its such a battle at go gone on so ling they treat me like a hypocondriac and make me feel like i dont want to go

    When i found out about mfthr they just said dont know anything about it

    X

  • Hi Mandlou. Very good advice from fbirder and gambit.

    But can I just ask...are you in the UK? I'm struggling to understand why you have to pay Β£100's to see a dietician and also pay 'loads for tests'. (Some here choose to see private practitioners, but it's not a necessity).

    Treatment and testing on the NHS is free (trouble with getting the right treatment is a different issue - for another time).

    If you follow fbirder's and gambit's advice, you should be able to get all your diagnostic tests and treatment free, via the NHS. There are issues to do medic's being ill-informed about B12 deficency and PA, but people here in this forum can advise on how to deal with that so you can get the best out of the NHS system.

    Please just take care because some (but not all) alternative (and other) practitioners do tend to push people in directions that are costly and not always necessary in the route to better health πŸ˜€.

    Please do keep posting any questions you have and it would also be good if you took the time to read the PAS pinned posts (to the right of the page when you log on). These will give you lots of useful information that you can then use to approach your GP (as per fibirder, gambit62 and wedgewood advice) - but just ask if you need any further help πŸ˜€.

    Take care X

  • Hi thankuou

    This is what im tryinh to find out my nan had pa

    But im being told i have mfthr and have tested positive for c677t but my nan never knew about thT she had injections so im confused im so ill and wondering if i really have pa and why cNt i just hAve injections ...im being tokd i have bacterial over growth Nd if i dont eat no carbs and just meat i will be much worse but i cant do it as i get so dizzy Nd surley i need injections maybe wont be so dizzy and headaches etc if my nN hD pa is this mfthr really important does that make sense x i have no money for functional medicine do im in the uk

  • Hi Mandlou.

    Think we need to break this down into manageable 'chunks' for you. So, first things first, please could you let me know if you have seen your GP (or a hospital consultant) and if so, what tests did they do?

    Will be able to advise you better once I know that information. πŸ˜€.

  • Ok im sorry if im confusing you ...i just git to sort out baby and i will be able to sit and explain.

    Ive had b12 when oregnant was very low needed injections but next doctor at surgery said not that low so im going to get copies...

    When i dont do this diet i think its lower its no yeast bread, sugar as at the begining i saw homeopath and she said i had candida but i never got better still bad constipation when i had yeast etc and bad mood even worse but even on diet i woukd constaantky need to keep eating ... and felt like i was going to fade out all the time ...

    Ill be back just sorting baby out x thankyou

  • Hi Mandlou. The next doctor you saw at the surgery may have been very mistaken to stop your B12. Following your B12 injections when pregnant, your B12 would have been high. It should have been. This did not mean that you did not need anymore treatment with B12.

    Your symptoms certainly do sound like those of B12 deficiency.

    It would be very useful if you could get your original B12 results, together with any blood test results from your functional medicine practitioner (if any were done?).

    Whilst diet and other things (like gene variants) do come into play, the most useful first thing would be to try and aim for diagnosis and the re-in statement of B12 treatment.

    Once this has been done, then people here will be able to further advise about the 'gene stuff' and gastric / potential diet issues.

    Please don't worry, there are ways to ensure that you can get B12 into your body...it's just how to go about it πŸ˜€.

    Gp's are very often ill-informed about B12 deficiency and PA (like the GP who simply assumed you didin't need it) but we can help you through the process and support you as much as possible.

    Hope the baby sorting goes well and we'll communicate in due course πŸ˜€.

  • HI Mandalou. It would seem from your obvious symptoms that your B12 is still probably very low (probably due to PA absorption issues) and, although your alternative practitioner was on the right track with gluten free diet advice, there is not nearly enough vitamin B12 in a multivitamin to raise levels, with pregnancy also having created high demand. With PA also in your family, it is even more likely that this is the cause of your symptoms and it is essential for your health and your child's that this is diagnosed properly and treated urgently.

    Very few GPs understand PA/ B12 deficiency, so it would be a good idea to go again armed with information in case needed and a relative or friend for support, as your neurological symptoms mean you should be treated without delay with more B12 injections as defined in the BNF guidelines UNTIL NO FURTHER IMPROVEMENT - πŸ™‚ (Sorry, am not shouting but can't work out how to type in bold on iPad!)

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    Here are some more links you may not have seen:

    b12deficiency.info/signs-an...

    b12deficiency.info/what-to-...

    cmim.org/pdf2014/funcion.ph...

    The above latest BMJ research document is supported by many research papers and has a useful summary. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters (bottom of page 4 under 'Response to treatment'.

    Folic acid has been mentioned above and you were right to query this as, it would probably be better to avoid taking this until your B12 is higher, There is an excellent film on the B12 deficiency site with information on this:

    b12deficiency.info/films/

    Also:

    gbhealthwatch.com/Nutrient-...

    "High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood.

    PS Good advice from Wedgewood above about sauerkraut. Many researchers believe leaky gut/intestinal disease is the ground zero of autoimmune disease so it is worth trying to persevere with the g/f diet - I find nibbling small amounts of protein throughout the day helps stop cravings.

    It might also be a good idea to ask for a full panel of thyroid tests as thyroid/PA/B12 def. are also linked both ways with overlapping symptoms.

    I very much hope you receive better treatment soon.

    PS Sally Pacholok recommends additional supplements as well as injections and, in view of your MTHFR gene, I wonder if you've tried supplementing with Jarrows Methylcobalamin 5000 mcg sublingually (good reviews on Amazon for neurological symptoms).

  • cmim.org/pdf2014/funcion.ph...

    Have posted the BMJ link again as it didn't work and the site won't edit.

  • Maybe when i tried the supplements the methalfolate was making me worse maybe shoukd if only tried the b12...

    I will ask for the tests you have mentioned i need supporting infi as its a battle with my gp surgery and i cant handle any more upset ....

    Why doent my b12 always show low?

    Only thing i can think off is like when i was pregnant i kept going off the gut diet due to cravings for burgers and my b12 was low...

    So maybe it screws the test somehow doing that diet ...

    I cant do that diet though i cant even eat fruit as i get thrush etc

    Thankyou xx

  • So sorry to keep asking questions when it is so hard for you with baby to look after.....but can you give us a brief idea of what your B12 levels were Mandalou?

    Were you taking folic acid during pregnancy - this can mask B12?

    Take your time - it sounds as though you have done so much already to try to get well and we are all here to help if we can.

  • Hi thats ok i appreciate your help.

    I didnt get a copy if my b12 and yes i was taking folic acid as pregnant. I also was on low dise steroids and steroids tgrough labour i font think i would if made it otherwise.

    Im going to write a letter asking for all b12 results to gp and gand it in tomorrow .

    And ask them to test golic acid.

    I lost so nuch weight after having jacob was nervous wreck freezing all the time shaky constipated having accidents incontinence number twos ...

    Im not taking ateroids maybe they were masking some of what was going on

    I agree i just need b12 asap just dont undestand why the supplements made me worse maybe to do with not knowing what my foliac acid was or folate x

  • I also have fat malaobsorbtion. If i wat high fat i have greasy poo sticks to the loo ( sorry tmi) and a bit looser stools ... and feel sick when i do ... but i will just concentrate on b12 like u said...

    Im like humtey dumpteyhopefully can put all the pieces back together again x x and most important make sure my som doesnt have tge life ive had x

  • I'm so sorry - a whole raft of circumstances have made life so difficult for you and it's no wonder you are feeling so bad. It would seem that digestive symptoms are at the bottom (πŸ™‚ sorry for pun) it all and malabsorbtion of B12 and probably other essential nutrients too.

    I've been thinking it could also be a good idea to contact Martyn Hooper at the PAS - he might be able to contact your GP to support and explain the effects of PA/B12 and how important it is to treat neurological symptoms urgently ?

    Email

    info@pasoc.org.uk

    

    Phone

    +44 (0)1656 769717

    

    Opening Hours

    8am – 2pm Mon-Sat

  • Hello

    Yes it all makes sense now . I saw gastro at the begining had endocsvopy but not alot else.

    My skin was a yellow sort of colour and pale, i had impaction feaces, rashes down my spine like excema, dizzy massive belly but going the homeopath route hasnt helped but it dud calm my. Ood the diet a bit nhs wouldnt listen at that point so maybe it did help a little.

    I have just joined the pas j spoke to a lady very nice she said get b12 test but i waa struggling to explainas felt bad and anxious foggy etc such a long story.

    She said csn send some dupporting ingo to take to gp once hog results but i think some one calling them like that would help me im already dreadingit!!

    Yes that would be great xx

  • That's great πŸ™‚ I'm so impressed that you are still able to be so proactive in the light of your responsibilities for your child and all the B12 deficiency symptoms you have described.

    i hope all starts to get better soon for you and Jacob.

  • In the meantime, I'd definitely recommend several daily spoonfuls of Bional organic sauerkraut - Β£2.09 from local health food store. It sorted out my own digestive/SIBO issues and put right poo and fat absorption problems πŸ€— which sound a lot like yours are. I will try and find the poo chart to post here😳

  • For when you have some time to read πŸ™‚

    wellnessmama.com/2245/healt...

    gutsense.org/constipation/n...

  • Really 2.00 wow something so simple i will get some today thanku .. im in debt from supplements !

    X

  • The nhs consultant after ten years going all over the country said ge thinks i have mfthr.

    I had to pay private as nhs dont do the test. 100 pounds. It was positive double gene so i went to nutritionist as the consultant said nhs dont treat it so was a bit confused and i. On my own single mum so its very hard.

    So had to 100 pound to see her and then all the supplements.

    Nhs and sietitan said i could have bacterial over growth as i said about foods that affect me and id gotten worse since lots if antibiotics but not been tested , i have however been tested in the oast for candida by a homeopath .

    So im under a gastro who is saying i have sibo despite no positive test and has said i must do diet ut i cant do it as i feel too ill when u try i have a. Aby and its expensive ! Meanwhile im getting worse ... he ssid i will have dysbosis from mfthr.

    The vonsiltant that said to do the test said he cant help on nhs he usnt an expert its a gret area i need to see a functional private doctor!!

    I have no more money i got a lian for the last one but when i tried supplements and felt worse im too scared of what to do.

    Thet are seeking health supplements.

    She also said i need to heal my gut first got me to buy lots of enzymes and other tablets ...when i havent had any test confirming what the gut issue is bit from reading a out pa it cAuses gut issues anyway so is that just a symptom tht will go!?

    I have borderline thyroid i was taking armour but feel more anxious. I. Been told i have bad adrenals i cant tke any stress etc

  • Hi Mandlou. It sounds to me like you've been given a bit of a run around (to put it mildly) with nobody taking responsibility for your care, over the years.

    Quite a few people here have gene variants and problems with bacterial overgrowth - and this is something that people here can offer advice about.

    But first, I think it would be a very good idea to try and sort out the B12 / PA issues, and then go from there.

    Unfortunately, I'm out of time right now...so,if you don't mind, I'll come back to you either later tonight, but most probably tomorrow midday ish.

    Take care πŸ˜€

  • Hello

    Oh thankyou so much u have made me feel such a releif i cNt explain what an awful ten years ive had i was suicidal at one point years ago...

    I was trying ti get my head around mftgr when it started to dawn in me my nan had pa but u didnt really understand it wish i could of helped my nan too πŸ˜’

    I lived like a hermit as so ill and tge facial weakness so scared what it was but yes i then starred to wonde what the hell it is if pa make sense and i cant affird all these costs and feel seriously ill and getting worse...

    Im sorried incase my baby biy has it as he has constipation and bouts of dioreah and hyoer activity etc but if i can get better i can then help him if he did have a problem and my mum .

    Thats great thankyou i will look forward to soeaking to u tomorrow thankyou so much im so goad i found u all thanku every one xxx

  • I wonder if my face will get better with b12 hope so ....destroyed my confidence but also my neck in spasm gets rigid when its really bad and my arm And leg on right side....

    I did smoke i still strugle to. Ot have one at all i know its crazy when ill...but i get colder and slower with out one at all but i know it must make ut worse as bad circulation ... maybe that's when my face gets worse but being in tgis situatiom makes it hard to stop completly as associate it with releiving stress... luckily i cant smoke in doors as have my boy so ive had to practically stop x

  • Good morning

    Please excuse my typing and spelling sorry x

  • Hi Mandlou,

    My heart goes out to you having such a tough time getting treatment and feeling so poorly! :(

    I agree with Foggyme that you should get your serum b12 tested and ask for the IF test for pernicious anemia. Do check out the PAS pinned posts at the right of the home page. There is one with a list of symptoms for PA and bring this to your doctors attention. I would only focus, right now, on your B12 levels.

    Even with the doctor-tell him/her that you are concerned about PA as it runs in your family. Personally, I would not even mention the other issues because doctors get confused very easily, in my experience.

    Just first things first. Try to sort out the b12 issue first! :-) When you get your b12 serum levels, post them with the ranges and you will get more feedback.

    Please don't be overly concerned about the mthfr gene mutation. If you get hydroxocobalamin b12, which is what the NHS uses, that will work fine for you. As fbirder says, you can try methyl folate (400 mcgs) to make it all work more efficiently together. I know you said it made you feel bad but maybe when and if you get B12 injections, you will then be able to tolerate the methylfolate.

    After the b12 issue is sorted, then we can deal with your other issues one at a time. Loads of people here, me included, have stomach issues, so you can get some great info about that too. As Wedgewood suggested, Symprove and sauerkraut are two great things to start with.

    Also, do the best you can with a gluten free diet, but don't focus on that just at the moment, it can be dealt with later, also. Just cut down as much as is comfortable for you right now.

    I know all of your issues need to be addressed, but I think you are so overwhelmed right now and especially if you need B12, it can be seem even more overwhelming.

    So, one thing at a time! :-)

    Very best wishes and keep posting so that you will be supported while you are getting everything straightened out! xx :-) And don't lose hope -it can all be fixed!! :-)

  • Thankyou , yes xxxx

    Ive been focusing on whats not important fir years ☹️️

    What ius the if test istric factor ? Should i ask fir that mma test too?

    Yes i have a feeling i just need injections to get some in me ...

    Ok i will do that andjust talk about b12 to the gp going to book appointment for asap and take symptom list in too like u said

    My poor nan thet stopped her injections i difnt realuse was do in it deep myself xx

  • Hi again Madlou. Okay - I've just read through this whole thread again and see that you've been given some very good advice. As you're feeling so ill, I thought it might be useful if I summarise what tests you should be asking your doctor to do tomorrow, so you've got it all in one place πŸ˜€.

    So...a full blood count (FBC), folate, serum ferritin and serum iron (a full iron panel better, if they'll do it), vitamin d, MMA (methylmalonic acid - some GP's have not heard of this but they can take advice from the haematology lab or ring a haematologist, if not sure). You could also do with a full thyroid panel - most GP's only test TSH and this is not accurate enough to show your full thyroid status. You will need to ask for TSH, FT3, FT4, and a anti-thyroid antibodies). (I'll say a couple of things about thyroid and adrenal issues further down). Also ask your GP to do a breath test for heliobactor pylori (often linked to B12 deficiency and gastric problems - you'd probably have to go back for this as it's a fasting test).

    Perhaps best to just make a simple list of the above so you've got it to hand - I know I always forget something if I don't go with a trusty list.

    I agree with ndodge about keeping it simple with the GP - most will not have heard of MTFHR and C776T variants and if you include diet as well, they'll just wander off in the same old way as before - which clearly hasn't worked for you in the past. (People here have given very good advice about how to deal with diet and gene variations - but do put up new posts whenever you need further advice or want to ask questions - it's all a bit confusing, and a bit much all at once, isn't it πŸ˜€).

    Simply explain to your GP that pernicious anaemia runs in the family, that you have previously been diagnosed with B12 deficiency, and that you'd now like to be tested to see if you have PA. (keep,in mind that you can still have B12 deficiency without having PA - but the symptoms are the same, as is the treatment). Also tell him how badly your health is impacting on your daily life, and that it now needs dealing with so that you can be well for your child.

    As has been suggested, print of the symptom checklist to take with you so your GP can see your symptoms - and the obvious link to pernicious anaemia.

    Keep in mind that all your symptoms could be linked to B12 deficiency and PA (the bacterial overgrowth, your postural hypotension, gastric problems, tinnitus, neurological symptoms - and all the other nasty things that are happening to you).

    Some things to keep in mind:

    You had B12 injections when you were pregnant and you also talk of having taken Seeking Health B12 supplements. This will probably have raised your B12 levels above the 'deficient' state (this is how it should be). You should tell your GP if you have taken B12 supplements, in any form: but I stress, this does not mean that you do not need B12 via injection (your neurological symptoms alone mean that you should be treated with injections). If your GP gets difficult about this (which often happens), we can offer advice on how to deal with this after you get your blood results. Just know, for now, that the golden rule is treat the symptoms, not the blood results. Your GP may not know this.

    If you have an heliobactor pylori infection, this can impact on the absorption of B12 and iron and cause candida overgrowth (if you prove to be deficiency in iron, this alone can make you feel very ill). Your GP will treat the HP if you have it.

    The fatty poo may be down absorption issues or it may be due to Coeliac's disease (another autoimmune condition that people with PA sometimes develop). (Will touch on this again in a moment).

    Autoimmune diseases tend to occur in groups - once you have one, you will often develop another (i.e. Hashimoto's thyroiditis) so...

    If your GP will not do a full thyroid screen, ask him to refer you to an endocrinologist. I note you say earlier that you have 'bad' adrenals - not sure who told you this but an endocrinologist would also do a full adrenal panel - so you could find out for sure if this is a problem (Addison's disease - which affects the adrenal glands - is another autoimmune condition that people with PA occasional get as well (though quite rare).

    Just to advise in advance, once you have your blood test results back, there are a number of referrals it may be appropriate to ask your GP for - especially if the blood tests 'throw-up' new information:

    Gastroenterologist - for gastroscopy and endoscopy. Both will entail doing (amongst other things) biopsies for PA and Coeliac's disease.

    Neurologist - to assess your neurological symptoms and ensure that there is nothing else going on (neuro symptoms can be caused by many things, not just B12 deficiency / PA)

    Endocrinologist - for full thyroid function and adrenal panel testing. If necessary, they will also test you parathyroid and pituitary function.

    Haematologist - if your blood tests show any anomalies (i.e macrocytic anaemia).

    Madlou, everybody here knows exactly what you are going through. Many, like you, have suffered for years - and that is so so bad. That is why so many people are dropping in with advice for you πŸ˜€. There are people here to help, whenever needed.

    B12 deficiency and PA are so very complicated and GP's very ill-informed about both (as you know too well)! When you have your blood results, if you get copies and post the results here, people will be able to help with interpretation and advise about the next steps (especially if your GP is being awkward about treating you).

    As many have said, have a read of the PAS pinned posts - many have found that the best way to deal with reluctant GP's is to become informed so that they can be helped to help us πŸ˜€.

    Keeping my fingers crossed at all goes okay with your GP tomorrow and I'm sure everybody would like to know how it goes so please (if and when you have time), post again with an update.

    And people will be here to help you thought the tricky NHS process and any difficulties you may face with your GP (some are really rude and hostile πŸ˜–πŸ˜±).

    Take care and very good luck x

  • Wow thankyou thats great all tests i need in one message....

    Yes my go arent bery nice they have been quite annouyed with me as i gorgett appointments but they know im ill but uf they had if helped me maybe i wouldnt forget or wouldnt need tk keep nloody going!! πŸ™ˆ

    Thankyou. Its only a blood test wednesday but im going to book to see a gp later today theres one that is quitr nice going to try and book her and ask for copies of my b12 as far back as possible ....

    Yes injabe alot of addisons symptoms im hoping will all improve with b12 but im aware it may of caused other problems

    I dont know if i have h plyori just a mfthr group saud my genes make me prone to it i dont know how i would if got that if i have ut maybe in hospital not sure...

    But i shoukd have poaiyive test for aibo begore putting everytging inyo treating that and its urgeunt that im well enough to do any diet just. Eed to function jormally first!

    Thankyou massive hug to you xxx

  • πŸ‘πŸ‘πŸ‘

    P.s. No idea if MTHFR makes you 'prone' to HP. HP is a bacteria carried by about 90% of the population but only becomes active in some people. Not sure why this happens - but many folks with gastric issues / PA have it. GP treats with triple course of antibiotics.

    Many cross-over symptoms between Addison's and B12 deficiency. Addison's disease diagnosed by endocrinologist and different treatment regime required.

    You could always ask the receptionist to print off your blood results - would make more time available with 'quite nice' GP πŸ˜€.

    Massive hugs back at you πŸ˜€πŸ˜€

  • Hello.

    I got the day wrong blood test is wesnesday so forgettful.

    Its onky a random blood test for health check scren has b12 on it. So, im going to nake an appointment and ask for the blood tests you have advised and ask them about pa etc

    Im going to trt get sumptims printed but no printer have to try and go libruary if i can .

    I have got jarrows b12 but if still got to have more blood tests ill have to wait i suppose ...

    Ive got methalfolate but like u said maybe need b12 up higher.

    I hooe tgey liaten to me. I had a letter also aent to my go saying ive got mfthr which ive got to work on but i struggle to do no carb diet for sibo.

    Its not fair its all got to complicated 😞 X

  • Please take a look at GAPS diet. I was same as you and healed my gut

  • Thanks jessup i been doing diets for ten years i dont get better c

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