need some help AGAIN, THANK YOU ALL , I AM VERY GRATEFUL FOR FINDING YOU ALL:)

ITS BEEN A STUGGEL HER WITH DRS. TRYING TO FIGURE OUT BY B12 MY D AND SOME OTHERS AND JUST GETTING TO THE BOTTOM OF WHY I FEEL LIKE OUT DO JUST OUT OF THE BLUE ONE DAY AND EVER SINCE.. I HAD MENTIONED TO MY DR THAT I READ PEOPLE WITH LEVELS UNDER 400 OF B12 CAN HAVE SYMPTOMS OF A DEFICIENCY . HER RESPONSE TO ME WAS THATS NOT TRUE AND I DONT BELIEVE IT. WELL I HAVE FOUND A NEW DR. BUT THIS IS STILL A STRUGGLE. I SWEAR IF I FIGURE OUT THIS AND GET BETTER I AM HELPING EVERYONE GOING THROUGH THIS , EVEN IF ITS JUST TELLING MY STORY. WITH THAT SAID. CAN B12 CAUSE MY SYMPTOMS WHICH ARE SHORTNESS OF BREATH (THIS IS THE WORST PART) I AM TIRED ALL THE TIME TO EXTRME I HAVE BURNING HEELS SPECIALLY AT NIGHT, MY SHOULDERS NECK LOWER BACK ARE ALWAYS HURTING ME, I HAVE CRAMPS IN MY HANDS AND FEET THAT BRING ME TO TEARS, MY EYES ARE SORE SPECIALLY IN THE MORNING, I HAVE LOST WEIGHT AND HAVE NO APPETITE, I HAVE HEART PALPITATIONS SO BAD I HAVE A HEART MONITOR ON I GOT TODAY,I AM HAPPY ONE MINUTE AGGRAVATED THE NEXT FOR LITTLE THINGS, I AM FORGETFUL AND CAN CONCENTRATE , I HAVE CONSTIPATION , I HAVE ACID REFLUX, I HAVE SHOOTING PAINS IN MY CHEST BUT NOT LIKE ITS MY HEART AND THESE ARE JUST OFF THE TOP OF MY HEAD. I JUST WANT TO KNOW WHAT IS GOING ON . I CANT LIVE LIKE THIS AS MY QUALITY OF LIFE IS AWFUL SINCE ALL OF THIS CAME ON. MY D LEVEL IS 8. WHEN I TAKE THE 50 THOUSAND UNITS ONCE A WEEK I SOMETIMES FEEL WORSE FOR THE FIRST FEW DAYS AFTER TAKING IT. I WONDER IF I AM JUST CRAZY. DOES THIS SOUND LIKE LOW B 12 MINE IS 268 ALONG WITH LOW D OF 8...ANY INFO OR HELP IS MUCH APPRECIATED . I JUST CANT DO THIS MUCH LONGER. I AM GOING THROUGH A MAMMOGRAM SCARE RIGHT NOW AS THEY FOUND A MASS I GO BACK IN 6 MONTHS TO SEE IF IT HAS GROWN...ALONG WITH AL THE OTHER STUFF ITS BEEN A ROUGH 3 MONTHS. I AM TAKING 3000 MCG OF B12 WAITING ON MORE BLOOD WORK TO SEE IF MY DR. IS WILLING TO DO INJECTIONS...AGAIN THANK YOU EVERYONE FOR TAKING THE TIME TO READ THIS LONG POST AND ADVISE ME...

20 Replies

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  • Please don't write in capitals, it is so difficult to read.

  • kimandken

    I have to agree with @beginner1, in that the capitals do make your post very hard to read, with no paragraph breaks.

    Typing in captials is also considered 'Shouting', so another reason for asking you to consider typing with 'normal' capitalization.

    In fact, I struggled to read all of your post for these reasons, although I do feel I've caught the gist. Sorry! ;)

    Please take these comments as helpful for future posts :)

  • it would help if you could provide units and ranges when quoting test results.

    Your symptoms could be caused by vitamin B12 - some could be caused by vitamin D but they could also be caused by other things - what are your iron levels like and have you been tested for thyroid problems? Notice that your previous post mentions that your iron levels are good.

    Taking high levels of B12 before blood is taken for testing is likely to make the tests meaningless / difficult to interpret.

  • Hello again everyone. I was happy when I seen so many responses but didnt think it was going to be mostly about how i typed:( Then reason i sometimes write in capital letters is because of my vision. in the past 2 months I have had very bad blurred vision along with seeing flashes of light. I have since had my eyes checked for the first time ever at 45. I always have had perfect vision and it scared me when started getting blurred vision and seeing this is dull color instead of vivid colors as I always have. I was told I need glasses and that I have cataracts. I am not very good at typing either and it was just easier for me to see what I had typed. I apologize to all who had a hard time reading it or thought I was yelling that was not my intention. i have a hard time concentrating and lose my thoughts easily as well. I was told that my iron was okay though I dont see it on my blood work. They did it as a finger stick in the drs. office. If I remember correctly it was 12.

    thyroid was 1.11 i was told it was normal other than i have nodgels on it

    d was 8

    Iron was 12

    b 12 was 268

    I requested other test as suggested but my dr. said it would look like fraud because its not typically tested for. I have since found a new dr. and he gave me a lab slip to have my b 12 and folate and methylmalonic acid tested . I will have hat done Thursday morning as I am having an upper gi as well and need to fast for that so will do it all at one time. I am not sure what this test will show and if it will be accurate as I have been told to take a b 12 supplement by my previous dr. I really wish I could find a dr. that could just help me with all this as I have read a lot and I get very overwhelmed and I cant remember as good anymore for some reason. I will be right in the middle of saying something and forget what i am saying. its very flustering and I feel like I just keep getting no where. I am wondering if a Rheumatologist can help with this. Any ways I hope this was easier to read. I am at the point of giving up as I have had drs. appointments everyday but I keep asking them to help me with the b 12 but is unreal at how many drs. that dont believe b 12 can do such horrible things to you and they literally make me feel like i am crazy. Just 4 weeks or so ago I was sent home with 4 perscriptions for anxiety and depression which I never have had well until trying to get to the bottom of this.....Sorry my post are kind of all over but I cant concentrate and tend to go back and fourth when talking about something and never have I been this way...Thank you all

  • Hi kimandkenken. Apologies that you received so many messages about typing in capitals 😖. I'm going to delete and replies that are solely to do with this 'cause they just get in the way and add nothing of value to your thread.

    In defence - I'm afraid that sometimes lack of B12 (or the symtpoms of deficency) can sometimes make people a bit cranky - which is perhaps what happened here.

    Writing in capitals is quite difficult to read, for some - but equally it's better for others. And writing just one word in capitals within a response is condsidered rude - but that's not the case with your post...I can understand that eyesight problems might make this easier for,you.

    So...apologies that your thread was overtaken in this way.

    I have a hospital appointment this morning so I'm afraid I can't add anything in answer to,your posts at the moment. I'll pop back this afternoon, look at the replies you've had, and see if I can add anything to help.

    For now, take care...👍

  • I see it was only my message that was delete, I was in fact defending the poster.

    I am fully aware it is considered as shouting when writing in capitals, what I feel is inappropriate is to have it pointed out on a help forum when members have come, possibly feeling out of sorts, for help and advice.

    I only pop onto the PA forum occasionally to read and learn but from now on I will not.

    Apologise to kimandken for intercepting your post and I wish you well.

  • Luckylocks. For clarification, several replies have been deleted from this string, from various quarters, for the benefit of the original poster.

    It has been necessary to leave some replies intact to retain the sense of kimandken's reply.

    I think I made it clear that it was understood - and that we supported - the reasons why kenandkim originally wrote in capitals.

    Please can we leave this topic now and return this string to the original poster.

  • I hope you do stay. there seems to be many kind people here and great information. I did the same as you for the longest time. I would come in and read others post and try to find the one most similar to mine then decided i would write a few post and see if that worked better. I dont want people to to leave because of one of my posts , so please stay and we can hopefully all help and support each other through this:)

  • Thank you kimandken,

    please do not think I am leaving because of your post, far from it.

    Just to add I had a really low Vit D. level a few years ago and felt awful so I hope you feel better once you get your levels up.

    Best wishes.

  • Thank you, after i thought about it all I thought the same thing as you said, about dealing with b 12 and how bad it can make us all feel and that we all have days where things bother us more than other days. Its all ok and I am glad to be here in hopes that we can all help each other, again Thank you

  • Thank you for rewriting it. Cataracts are a pain I know. I am sorry your post got involved in a spat.

    My sympathy for your treatment by your doctors. Doctors here try to give anti-depressants too when we really need B12 injections. Hopefully your new tests will give you some answers and some good treatment.

    It is 2 am. here so most people will be asleep but tomorrow advice will be given I'm sure. Good luck and my best wishes.

  • If you have nodules on your thyroid then I would suggest better testing. The one test you had was the TSH - Thyroid Stimulating Hormone which is from the Pituitary Gland. It tells your thyroid to produce T4 - a storage hormone which needs to convert into T3. So the tests you need for the complete thyroid story are - TSH - FT4 - FT3 and anti bodies TPO & Tg. The TSH test tells you very little ....

    I am not a medic but have a thyroid and B12 issue ....

  • I am going to take this info back to my pcp. I have been saying I think something is off with my thyroid but the response is always well you are in normal range. what i keep thinking is normal per say may not be normal for everyone...thank you for this information. when i go to read about thyroid stuff it seems to be even more confusing than the b12. with the hypo and hyper Im like wait what was that haha...again I thank you

  • thyroiduk.org

    On the above link you will read about testing and how to interpret the results. Your TSH needs to be around 2 and the FT4 & FT3 towards the top of the range. Don't forget the anti-bodies. 😊

  • Hello kimandken.

    I had all those symptoms you said. They can all go away if treatment is effective. Blurred vision will be caused by protein to bring broken down properly and these protein cells can float behind the Iris or how ever you say it 😂

  • I did not know that .I have eye pain too usually its worse in the morning. I will see if I can ask my eye dr about this as I am not getting to far with my pcp so it may not hurt to ask the eye dr. about this one...Thank you

  • Hi kimandken. I'm so sorry that you're feeling so unwell and having such a hard time trying to get your GP to sort out your health issues.

    It's difficult to tell without the reference ranges but your serum B12 looks as if it might be within the reference range - but very low - low enough to potentially give you the symptoms of B12 deficiency. It's in want's called the 'grey' area and many GP's are not aware that it's the symptoms that must be taken into account - and treated - not simply the serum B12 levels.

    Unfortunately, taking the high dose supplements will make getting an accurate diagnose of B12 deficency quite difficult since this will raise your B12 levels and so on further testing your GP will simply assume that you are not deficienct because your serum B12 levels are 'okay'.

    Vitamin B12 deficency is not that simple. You can have vitamin B12 deficency even if your levels are within what is called the 'normal' reference range. Your GP probably doesn't know that.

    Your vitamin D and iron levels look very low too - your GP should be treating these. The fact that these vitamins are low (together with your low B12 levels) indicates that you may have an absorption problem - and your GP should want to investigate and look for what's causing this.

    Incidentally, if anyone in your family has an autoimmune condition (and pernicious aneamia is an autoimmune condition to), then it is likely that you could also have one. If this is the case, your GP should certainly test you for pernicious anaemia (test IF antibodies). If the test is positive you have PA - but 50% of tests return a false negative result, so you can test negative and still have PA.

    As you have what could be the symptoms of B12 deficency, your GP should want to test IF anyway 😄.

    It's also worth noting that some medications can cause B12 deficiency by interfering with the bodies ability to absorb vitamin B12 (i.e. metformin, PPI's - and more beside). Also, infection with heliobactor pylori (a stomach bug) can also have this effect. I not that you have acid reflux - this can be caused by heliobactor so ask,your GP to do a breath test to check for this. You could also mention it's connection to B12 absorption problems - some GP's don't know about this.

    I note that your GP has note tested your folate levels. B12 and folate work together so if you are too low or deficienct in folate, then your body cannot process B12 properly. Ask,you GP,to check your folate levels.

    You say that your iron was 8 - bit difficult to understand what this refers to as there are various ways of measuring iron in the body. Here's what your GP should look at:

    Ferritin - low ferritin can be indicative of iron deficiency anaemia. But, the best way of looking at true iron status is via a full iron panel (serum iron, saturation, transferrin etc). This gives the body's trus iron status and, incidentally, may show other types of aneamia, if present (there are many forms of aneamia, all of which may require different treatment. Ask your GP for ferritin and a full iron panel (again, possibly - but as you've been deficenct already, your GP should want to check progress). NOTE - doing a finger stick test is not sufficient to test iron properly - you really need the blood tests - as above - especially in view of,your symtpoms (these could be caused by a complicated mix of B12 deficency, iron deficency anaemia, vitamin D deficency and - and Imthibkmthis is likely - the symptoms of B12 deficency.

    Your GP should also do a full blood count (FBC) - this contains various markers for vitamin deficencies (folate, B12), PA, and iron deficency anaemia. This may give more precise information with which to,understand your current symptoms.

    However...be aware that GP's often say blood results are normal, when they're not. Bumping along the bottom of the reference range (or indeed being at the top) is not good enough for some people - especially those with absorption problems and the symptoms of B12 deficiency. Always get copies of,your blood results (you are legally entitled to these) and if you want to post the results here, together with the reference ranges, we can help with interpretation.

    It's really quite difficult to suggest how you approach your GP because it's not easy to sort out exactly what has happened.

    I think the best place to start would be to print the symptoms list (more about that below), highlight everything that is relevant to your case, and take it along to your GP. You can also find a more extensive symptom list at b12deficiency.info - pick the one that best matches your range of symptoms and use that one to take to your GP.

    You will also have to find evidence in the documents below to 'show' your GP that the symptoms of B12 deficency can be present when B12 levels are 'normal' (he probably won't know this). In addition, if you have neurological symptoms (and I thinkyou do), then your GP should treat you with B12 injections immediately - all the guidelines state this (print a document below called the NEQUAS B12 Treatment Alert - this instructs medics to treat the symptoms of B12 deficency when neurological symptoms are present - even if B12 levels are in the normal range).

    I'm going to leave some links at the bottom of this reply which contain information that will tell you all about vitamin B12 deficiency, diagnostic and treatment protocols, guidelines for treatment and 'myth busting' information that will help you to debunk some of the odd notions that GP's seem to have about B12 deficency (if necessary).

    I know that you have trouble with reading so perhaps you could print these out in a large font. Also - it will look like a lot of information but...most of the documents are one page long and the one longer document (BSH Cobalamin Treatment Guidelines) has summary sections throughout, so you could just read those I'd the whole document is a struggle. It's a good idea to highlight anything relevant to your case as you go,along, so that you can find it again easily.

    I'm aware that reading all this information and having to make sensible arguments to support a treatment request when you're feeling so ill will feel like a might feat and a large ask 😖. Unfortunately, this is the best way to get reluctant GP's to offer treatment - by proving, with evidence, that they should, and by demonstrating that you need it.

    Most GP's do not know that they should be trying symptoms - not blood results. All the guidelines say this (if only they would read them). So, just wondering...is there someone who can help you with this...and also go along to your GP appointment with you to jump in and support your arguments, if necessary. It's sad but true that GP's are often more attentive - and less hostile - if a witness is present.

    I know you feel really ill and that you feel as if you're 'at the end of your tether'. Everybody in this forum has felt like that so we can all understand how you feel. Please just know that there are people here who can help and support you...just post if you have any more questions or need more help.

    Good luck, lets us know how you get on....and here's those links:

    LINKS TO INFORMATION AND GUIDELINES

    b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

    evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

    onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

    stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

    👍

  • Thank you for all this information. I have read it once and i am printing this all out actually all the responses and taking it to bed with me to read again. I am very grateful for this forum. I really feel like i just cant do it anymore and when I read these tonight it makes me want to figure it out even more. I would have never thought that a vitamin deficiency would be such a struggle to figure out with my dr. or drs. They seem to be willing to do all thses very expensive test such as i am on a heart monitor just had a echo cardiogram i am having a colonoscopy which i need but they are doing like three other things while i am under I have had breathing test extensive ones and yet I tell them look i read about this and this really could be the problem but yet no testing without a fight anyways. I am sure others here go through the same thing . if i can figure this out and get better I swore I will do what i can to help others going through this. I wish i could now but I am learning for one and half the time i cant even take care of myself...anyways i thank you and everyone here trying to help me. I will be back in probably next week after i get my test results back from current blood work and by then i will have had many other test colon test ect.......talk soon , take care...Kim

  • Good luck Kim. Please do get your blood results and post them here, together with the reference ranges, if you need help with interpretation.

    👍

  • Hi,

    Lists of B12 deficiency Symptoms

    pernicious-anaemia-society.... see Checklist

    I gave a copy of PAS list with all my symptoms ticked to my GPs.

    b12deficiency.info/signs-an...

    In UK, people who are symptomatic for B12 deficiency are supposed to have an IFA (intrinsic factor antibody) test and start initial b12 treatment.

    stichtingb12tekort.nl/weten...

    b12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of the PAS. Book is up to date with UK B12 guidelines.

    "Could it Be b12" by Sally Pacholok and JJ. Stuart (USA authors)

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