Continuing my previous post on b12 deficiency, I always had great communication skills and vocabulary but lately I am having a terrible time remembering words and am mixing up grammar (like using singular with does etc). There's no trend whatsoever and sometimes I forget common words like "decorum" and "ignorant" too. I re-read my sentences multiple times when i type to ensure there are no grammatical or spelling errors. This has reached a state where I have become completely paranoid. Also sometimes I have pronounciation issues with words which I have been using since childhood. Do you think these are classical symptoms of b12 deficiency or there might be something more sinister at work here? I am thinking of getting b12 shots from my GP but if he goes for a b12 blood test, seeing the results, he will immediately ask me to get lost. How do I convince him to hear me out?
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Dlonelyguy
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"I was diagnosed as being b12 deficient in January this year coz of memory and word finding issues with my b12 level at 180 pg/ml. I was given 5 injections of mecbl (500 MCG) during the first two weeks and then provided sublingual strips of 2000 MCG mecbl, B9 and B6 for the next 3 months."
Can't you go back to the doctor who prescribed the injections and ask for more and get those in stead of strips or sublinguals?
Did you get tested for pernicious anaemia? If not, might be worth doing.
You wrote earlier that you were improving. But then symptoms return? Might be that there is a co-factor and getting checked out by your GP would be a good idea then.
The sad part is that my family doc is in India and I have shifted to the states recently. In India, getting shots is so easy that forget about one per day..u can get one per hour if u r ready to bear the cost. Unfortunately that is not the case in the US and hence the struggle. The GP here is not ready to accept that I m deficient in b12 in the first place. My IBS and psoriasis have become better but the word finding issue remains and is terrifying at times.
Oh I'm sure you can get them in the US as well, privately, but that would probably cost 1000 times more than in India..
Get the GP, explain symptoms (without mentioning the B12) and see what the GP says and to test at least the rest, to check there's nothing else going on. And when he/she does, just mention that now you're going anyway add IF antibodies.
Why won't the GP accept your first level of 180? Or does he/she think that's a normal value?
So he recently got me tested and no prizes for guessing the value...it was 937 pg/ml and he was like stop those meds right away...I tried to reason out with him that I am taking b12 supplements and hence the high value... that's when he dropped the bomb- "no wonder you are having brain fog and memory issues" Also what is the difference between injections and sublinguals? I was reading somewhere that sublinguals are almost as efficient as injections when it comes to treating b12 deficiency and hence the question.
Oh yeah completely (only had the scalp psoriasis though). My dermatologist was quite a quack and used to prescribe me expensive shampoos and gels which had little to no effect on my flaky and itchy scalp. Since the time I have started my b12 medication, the psoriasis has become a lot better. I have also read about the link between the two.
yes, forgetting words featured within one of our 'Poster's' blogs just the other day - AND, made me feel relieved, since it has a recognised name too - Nominal Aphasia. Whilst I completely forget everyday words, sometimes I do remember the initial - still no good to me though (:).
My cousin (with Thyroid condition) sat and went thro' the 'phone directory the other day 'cos she was livid she couldn't think of a friend's surname. Luckily she only had to go as far as a 'D'!
I am amazed how you are able to bring humor in these testing times. Hats off to you! On the thyroid I got myself tested and my TSH is at 4.5. Do you think it might be contributing to my word finding issues?
Yes, get your thyroid checked for sure with that TSH. Test very early morning and include Ft4, T3 and pref antibodies. Could be (in part) reason for foggy brain.
Ohh I got myself tested for antibodies in India. No one prescribed it but I still went ahead and took the test as it was part and parcel of a wellness program. The result was 127 (anti tpo) I believe and it was definitely out of range (34 was the range). Would you be knowing the connection between antibodies and memory loss ?
Well, then you have pernicious anaemia and that alone should be enough for your GP to give you injections. Did you tell him/her this?
The memory loss is not connected to the antibodies, it's connected to the B12 (and/or thyroid and/or something else) Get the thyroid tested and see the info in Pinned Posts about PA.
Nominal aphasia, dysphasia and similar problems are classic B12d traits.
Thank you admin for filling in the details.
I expect you need more B12 and cofactors: injections and a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium, maybe iron.
After a year of daily jabs I am much better and don't usually worry about it now. I had got so I couldn't think fast enough to talk and still lose my speech if I don't get enough of the cofactors needed to metabolise the B12.
What form of b12 would u recommend for injecting? Methyl or hydroxyl? Actually things went southwards when I was injected the first time with brain fog getting worse and I forgetting my doc's name :). Also how many injections are recommended to get rid of this fog.I know it is too much of an ask but I have an important interview coming up and would like to feel like my old self to crack it
Hi Dionelyguy. Just wanted to let you know that you are not alone in this!
I call it the speech equivalent of 'handbag in the fridge' events!
Some of my recent 'goodies' are asking my husband to get the ironing off the washing line and asking if he had finished reading the TV. And that's on a good day when I can actually string a sentence together!
Agree with what others have said...and can't quite understand why your doctor has change you from injections to B12 sublinguals / strips.
Think Deniseinmilden's and PAS Admin advice is spot on. And perhaps your GP could be persuaded to put you back on B12 injections?
You could also point out that once B12 supplementation has started, testing via serum B12 levels is no longer necessary, as per guidelines. Your B12 level will be high simply because of the supplements (and it also does not show what is happening to your B12 at a cell level - how much your body is able to use).
In addition, all the guidelines state that your GP should be treating your symptoms, not your blood levels / results.
If you look in the PAS library and do a search on this site, you'll be able to track down the relevant guidelines, if you don't have them (i.e. NICE, NEQAS, BMJ), and Fbirder has also,produced a good summary document of all the relevant guidelines (Frank Hollis document).
Good luck and let us know how it goes xx
P.s. - sorry, just noticed from one of your responses, that you live in the USA. Going with the PAS Admin suggestion a good idea - but you could use the UK guidelines etc. to add to your 'knowledge bank' and help you to put your arguments together. Good luck.
Thanks a ton for that response. Please please please tell me whether the injections helped u. I am hating this current phase in my life..especially when I am about to start my career and this b12 deficiency is already wrapping it up
Hi Dionylguy. Really sorry that this is happening to you at such a crucial time in your life.
The short answer is yes, the injections did and are helping. My GP also withdrew B12 injections due to 'high' B12 levels, one week post injection! How silly! I now self-inject, but still battling to get GP treatment re-started.
The longer answer is that I found that B12 alone is not the only answer. Getting the right balance of co-factors also makes a hugh difference but it's quite a balancing act to sort out what is right for each individual. For instance, my symptoms got worse and I discovered that I was really low on iron, vitamin D and calcium but too high on folate. Now working to address these deficiencies but it's really difficult persuading my GP to help keep track of the levels.
It's also worth noting that co-factor levels that are too high can also have a detrimental impact on health. For instance, high levels of iron, potassium, and folate can be dangerous and make you feel very ill...so it really is very important to get the levels just right!
I have an appointment to see a functional medicine practitioner at the end of August - feel I need some expert advice to help sort this little lot out. So we'll see!
I note that you say you have IBS - do you also have any gastric issues? These can cause absorption issues and impact on all things B12, especially if you are taking PPI's, which lower B12 levels.
I know practically nothing about thyroid issues but many report here that B12 deficiency and thyroid issues go hand in hand: I have read here that TSH should be about 1, so at 4.5 your's would appear to be high. As I say, not much knowledge about this but think it's definitely worth perusing.
So, back to the fog - yes, it does lift and it certainly descends again when I am due for a B12 injection. My 'tells' are 'the fog', painful feet, dry eyes and a sore tongue - definite indicators that I need to inject.
Have you tried keeping a symptom log - will help,you to keep track of what makes symptoms improve and also when you are 'taking a dip'.
Also - with respect to B12 levels - they need to be between 1000 - 1500 for proper repair to take place (see Patcholock and Hooper books) so your level of 928 (I think you said) is by no means 'extraordinary'. My levels run at over 2000 and many here report levels far higher than that.
Anyway, I wish you the very best of luck with your interview - please keep,in mind that people can't 'see' the 'fog' and we often come over better than we think we do! And interviewers will be aware that all candidates are nervous in interviews, so will always take account of this. Just relax, take a deep breath, and keep going!
Please let us know how it goes xx
P.s. I'd love to change my username to 'bright as a button' or 'perky me' 😀
Hi Paul2978. The 2000+ level was one week post injection and I used it simply to show that serum B12 levels will inevitably be high after a B12 jab.
So...is this my optimal/normal level...no, but I wish it was that simple 😀.
My understanding is that the serum B12 level only shows how much B12 is sloshing around in your blood, not how much is actively and effectively being used at a cell level. So there is no easy correlation between B12 levels in the blood and 'optimal' therapeutic levels.
At the point where my known B12 level as 2000+, I was still getting symptoms of B12 deficiency and so injecting every other day.
Someone here once said (sorry but can't remember who) that the right amount of B12 is the amount that makes and keeps you well...and that has stuck with me.
All the guidelines (NEQAS, NICE, BMJ etc.) state that medics should treat symptoms and not blood levels / results and that testing B12 levels after treatment has commenced is not necessary. So, it's a pretty futile exercise (although most GP's don't appear to know this).
So, in conclusion, I take no notice whatsoever of what my B12 levels are (unless they happen to be low). My GP insists on re-testing in the mistaken belief that B12 is toxic and has stopped B12 treatment, despite my being symptomatic (also with neuro symptoms). Nonsense, I know, and I'm working on that one!
Oops....bit of a long answer to a short question...but I hope it helps.
Good advice above. Re. further testing after treatment has begun, I've just answered another post as follows:
Re. Bottom of page 4 -
"How is response to treatment assessed?
Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not required."
PS I found supplementing with Jarrows methylcobalamin 5000 mcg SL helped memory issues and stumbling over words (good reviews for neurological symptoms on Amazon) 🙂
To be honest after so few injections and the short time you were treated for I doubt your blood levels are any where near high enough.
B12 has become scarce since many people abroad (celebrities)pay to have them for energy boots. Hence a months supply is about £45 /58 pounds so again it's about cost. Two years ago it was £26 ish.
The advice given is good tho -ask for more you are no worse off and if you don't get any buy some stronger lozengers or a b12 body spray which is better still.
Also I had memory lapses due to very low thyroid so best see if you can have a full range of thyroid levels including free t3 and t4 together with vitamin levels. If they won't help you I would suggest you pay yourself through blue horizon.( you get a discount through thyroid U.K. )
If so post your levels and people will help you. The b 12 level previously should have been 1000 and folic acid more than 1000 too. (b9)
The b 6 I believe they may have gone to reduce homocysteine levels. If this is the case it's a inflamitory protein that is a proven risk factor for heart disease, osteoporosis, Alzheimer's and heart disease. ( sorry don't want to scare you here but this needs attention)
Also it's worth checking your hcl levels to ensure you are absorbing your food etc.
If you go down the lozenge route take one with hydro cobalamin up to 4000 mcg daily and injectable metho.
Foods best to eat are liver beef trout salmon haddock tuna proper plain yogurt( not low fat) tuna eggs ham and chicken.
some have also found that providing their GP with books, such as Sally Pacholok's Could it Be B12? - so they have the opportunity to educate themselves can help.
Which form of B12 suits varies very little - in Asia they tend to use methyl - in the US normally cyano. Some in Asia recommend a mix of methyl and adenosyl as there are a few reported cases of peple being unable to convert methyl to adenosyl and as the body needs both ....
Some in North US have been known to go across the border in to Canida and get injectable B12 from there but that wouldn't be methyl.
I used to get this daily. I couldn't get words out during a conversation and they would be muddled. It felt like my brain had frozen and i couldn't get the words out or my speech would be stammered because i was trying really hard to make sense. Hope this makes sense to you. I now inject three times per week (officially once every 3 weeks) and i have noticed i now only get these symptoms very occasionally.
Thanks a ton people for the overwhelming response to my question. I don't know what would I have done without this forum. I just have 3 follow-up questions:
A) does a positive result for microcosmal antibodies (AMA aka anti tpo) necessary mean that you have PA?
B) As foggyme (hope you lose that username pretty soon ) pointed out that one needs to achieve a balance, how can one actually achieve that? Repeated testing?
C) So the reason I stopped the sublinguals was coz I started feeling a little funny. Had weird headaches and numbness and tingling in hands/feets. Also I am a little baffled at the number of injections you guys are having almost on a daily basis. Won't this take your b12 through the roof. Does it have absolutely no side effects? Sorry for asking this question repeatedly but I am still not able to fathom the fact that b12 levels of 10X are still safe.
A) Has nothing to do with PA, that's thyroid. Sorry, my mistake, had brain fog yesterday, didn't read well. Did you get TSH and Ft4 tested as well? (thyroid)
B) Test and correct deficiencies, and then re-test to see if they stay normal without supps or if you have absorption problems in more than just B12
C) See the pinned posts on the homepage, the article on safety B12. Might have been that the sublingual you took had something in it that you are sensitive to. Some have flavours and additives that one can be sensitive to.
I didn't get my ft3 and ft4 tested. Does hypothyroidism also mimic symptoms of b12 d? Also, I know it's a lame question but in how much time after injecting with b12 do symptoms start getting better? I read somewhere that you should be getting a b12 injection every other day till you reach a point of maximum well being and then move to maintenance injections. Is it correct?
Yes, hypothyroid has many overlapping symptoms with B12def. Just have a look on the Thyroid forum or their website for info.
How much time? Well: stichtingb12tekort.nl/surve... That's from the Dutch survey. In NL we get 2 injections a week, not alternating days (which I believe in most cases won't make much difference, survey showed also) Anyway, it's different for everyone. Re alternating days: yes with neuro involvement.
Thanks for that reply. If I understand it correctly, injecting b12 into the blood stream will directly take it to the cells where it is required which is not the case with sublinguals? And therefore injections are preferred over sublinguals while treating a b12 deficiency?
Sublinguals, nasal sparays and patches release B12 directly into the blood stream and bypass the stomach (unlike B12 in tablet form, which goes via the stomach and doesn't work for people with PA, absorption issues, post gastric surgery etc).
They work for some people, but not for others. Some use them as a boost, to go along with injections.
Some find that injections are the only things that works for them.
Afraid it's a bit of trial and error, of finding out what works for you.
Another one for mixing up words and complete thought block mid sentence here. Very significantly better now but a good sign if I let injections go longer than I should (along with breathlessness at rest, needing to take deeper breath consciously).
It used to be very embarrassing at work as I would say completely lose what I was saying.
Your TSH is far too HIGH - OK it may be in range - but healthy people have a TSH around 2. If you have PA which is auto-immune - then the Hashimotos is also auto-immune. Your TPO anti-bodies are over range - so you have Hashimotos. TSH is a Pituitary hormone and responds to circulating T3 in the blood. When there is sufficient - then the Thyroid Stimulating Hormone reduces.
The Thyroid produces T4 - which is inactive and must convert into the ACTIVE thyroid hormone T3. This is needed in every cell of your body. The brain has the most receptors for T3 followed by the gut. So when the FT3 is low then there is not enough to go around and things begin to go wrong.
The upper level for the TSH was reduced to 3.5 in the US back in 2003/04 - but sadly few Docs have taken this on board. You could check out on the website of the ATA - American Thyroid Association - I believe that is the name.
Yes being Hypo has many similar symptoms to B12D and the two conditions often go hand in hand. Chicken or egg ?
Here is the main website of Thyroid UK - where you will find all the information you need - including a page for Understanding Test results. Go to the 3rd column !
Hope you soon find some answers and the treatment you deserve. Get that thyroid treated
I am not a medic - I have Hashimotos - Crohns and a B12 issue thanks to Docs forgetting to tell me I would need B12 injections for life when my Terminal Ileum was removed with TB some 43 years ago
Thanks for that amazing piece of information Marz. Had a small follow up question: ppl with hypo also have tingling and burning hands and feet? Could hypo also affect the nervous system in sm way?
If someone on the Thyroid forum mentioned tingling and burning - I would point them in the direction of B12 testing. As I mentioned before - Low Thyroid goes hand in hand with Low B12 - or is it the other way around ? I once wrote a post on the Thyroid Forum - Thyroid or B12 - Chicken or Egg ??
Yes of course being Hypo can affect the nervous system. EVERYTHING needs to be OPTIMAL. As I mentioned there are more cells with T3 receptors in the brain than anywhere else in the body. The gut is next and that is why so many people have gut issues. I see you have IBS - which is of course a syndrome - so nothing specific. You could find that once your Thyroid is performing optimally your gut issues will resolve.
With Hashimotos - the anti-bodies will eventually destroy the thyroid - so best to start supporting it now with some treatment. As you can see from the list I posted to you there are many conditions that are linked to LOW thyroid. Not least the heart
When I was diagnosed with Hashimotos here in Crete - the TSH - FT4 - FT3 were all in range but the anti-bodies were HIGH. My GP said to start treatment to SUPPORT the thyroid whilst under attack from the anti-bodies. That was back in 2005 - I am now well and feeling the best I have in years as I hurtle towards 70
You can click onto my name and read my edited Profile about my journey to wellness !
I had the same problem, it got to a point of preferring to keep my mouth shut instead of talking. I was upset n annoyed at myself for making simple stupid mistakes. Luckily I managed to persuade my doctor to increase my b12 injections to 8weeks inbetween, that helped so much but I still had the problem as my next injection was due. So I went back to my GP n fought them for a year to increase my injections again to 6 weekly, n believe me it's helped so much. It still happens but as it's starting to happen my next injection is due. It's gone from a month of getting words wrong n no concentration to 2.5weeks to a week now. My concentration has improved, having conversations with people n being able to keep track has improved, moods are a lot better n self esteem has improved as well. I'm more confident in myself n don't feel like an idiot any more. Fingers crossed increasing your injections might help x
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and hence the struggle. The GP here is not ready to accept that I m deficient in b12 in the first place. My IBS and psoriasis have become better but the word finding issue remains and is terrifying at times.
Am finding everything worrying.
B12 and teeth/gum issues?
