Hi all I'm new to the forum. Have been suffering exhaustion, disorientation, pins and needles in hands, weird salty taste in mouth, tinnitus and an odd breathless feeling (keep sighing) and have seem to be losing my train of thought/forgetting the odd word. Dr has done full range of tests inc FBC, viral (she thought it was post viral fatigue) and b12 and all are "normal" with no anaemia. It was only when I queried that my b12 level was right down at the lower end of the range (215) that she agreed to try me on loading doses of 6 over the course of 2 weeks then 3 monthly. She still doesn't think I am deficient but at least is treating me. My question is whether the dizziness/disoriention, tinnitus, pins and needles and forgetfulness are classed as neurological symptoms? If so should I ask for extended loading doses? I just want to feel normal again!
B12 low end of normal range but sympt... - Pernicious Anaemi...
Pernicious Anaemia Society
My symptoms are extreme tiredness to the point that even little tasks wipe me out, dizziness/disorientation, tinnitus, breathlessness when exerting or even just sitting (sighing a lot), feeling 'not with it' or able to concentrate, pins and needles in hands, occasional burning feeling on soles of feet, clumsiness - dropping things or bumping into things that seem to be further away than they actually are, doing daft things like putting rubbish in the fridge and the food in the bin! Forgetting names/losing train of thought, palpitations, feeling the cold more. All thyroid tests have come back fine as too has all the other tests so it's a bit of a mystery.
You say all your thyroid tests come back 'fine' but they may not be. Go on to the thyroid uk forum and post your thyroid results on there. You will see many people are told by their GP's that their results are fine when they are not!
Your b12 is very low but that doesn't mean you don't have an underactive thyroid too. A lot of thyroid sufferers also have b12 deficiency because their low level of stomach acid prevents the proper absorption of nutrients.
Yout symptoms certainly relate to low b12 and I hope you start to feel better with the injections soon.
Out of curiosity has anyone experienced any taste changes as a result of B12 deficiency? Everything I eat or drink tastes salty!
This website (not scientific) lists B12 deficiency as a possible cause of salty taste: healthguidance.org/entry/14...
I am on the low end of normal in regards to vitamin B12, and I have this "salty taste" symptom. In fact I cook all the meals for my family, and thought I was over salting our food, I kept cutting back, until everyone noticed the food was no longer flavorful 🙄
Hi Crissiannj. You've replied to a post that's over two years old so,your post
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Unless, they're like me and like to search through old threads. I'm aware it's an old post, and I do know how to write a new one. Thanks.
Short answer- yes.
You might have a fight on your hands to get her to give you more than what she has already agreed to though as it seems she doesnt think it a problem.
Suggest you keep a symptom diary as you have the injections to see if there is any improvement and for a couple of weeks afterwards. That way you will be able to discuss with her where to go on how she further treats or tries to find another cause for your symptoms.
Thanks thats a really good idea and I'll definitely do that. She seems to think that for it to be b12 deficiency my bloods would show anaemia or macrocytosis. My MCV is closer to the higher end of the range but not over the magic number of 100 but I've read that anaemia/macrocytosis isn't always present so not sure if she's discounting b12 deficiency purely on that (possible fallible) basis.... I have had a prolonged period of stress over the past year (mum diagnosed last year with stage 3 multiple myeloma) and 14 year old son diagnosed with social anxiety so it's been a rough ride but I've coped and not gone under. GP thinks symptoms are a reaction to the stress now that mum is stable and son is receiving help - that my body is just 'crashing'. Really don't know what to think as it seems strange that all the symptoms I have can be explained by b12.....
She seems to think that for it to be b12 deficiency my bloods would show anaemia or macrocytosis.
From this article in the BMJ - healthunlocked.com/api/redi...
However, it is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases treatment should still be given without delay.
An estimated 20% of patients with neurological signs do not manifest anaemia.
Wow! The sighs. I'd forgotten about the sighs. That was the clincher for me when first diagnosed. I was reading out the symptom list and, when I got to 'the sighs' was told - 'That's You! It's so annoying.'
That was one of the early-disappearing symptoms.
Haha yes my husband keeps thinking he's done something wrong and that I'm sighing in despair at him
Are the sighs the same as what I call hiccup breathing.
Mine is more like the need to take an extra deep breath on fairly regular occasions so I'll breathe normally then every so often feel the need to take a deeper breath if that makes sense? I find I get out of breath if I exert myself at the moment so have to rest a lot more frequently if I'm walking anywhere.
Yes that sounds like it, but it is like a hiccup that it comes out of the blue, unexpectedly.
I have been doing the sighing for some time, but thought it was as a result of an accident which has left me with a paralysed diaphragm. It has been difficult to describe in anyway that doctors seem to understand. I have numbness and tingling in the feet, and am about to start weekly injections, but I never associated the sighing with B12
Your doctor should be testing you for P.A.(Intrinsic Factor test) . While this test is not 100% accurate(you can still have P.A. If it doesn't show up) it should be carried out if you are not a vegan or strict vegetarian i.e. Not getting B12 in your diet. 215 is LOW. Pernicious Anaemia is not a good name for the condition as you can suffer from it without ever having anaemia.
Pins and needles are definitely neurological symptoms. YOU ARE DEFICIENT -- and will need at least 2 monthly injections In Germany (I go there often as my daughter lives there) I have found out that anyone with 500 or less will be treated with injections if they have symptoms , without first having the I.F. Test. My doctor wouldn't accept that my totally numb feet were neurological symptoms even when P.A. Was proven with I.F. Test . So I had to self-inject which was partially successful as now my feet are not numb, but just burn. I doubt that you will be allowed extended loading doses , so be prepared to come back here and ask how to go about self- injection. All the very best to you .
Thank you so much. I will ask about the IF test. Would the result be affected given I've already started receiving loading doses?
ABSOLUTELY NOT! Before I was diagnosed with P.A.(had to go to a private G.P. To get it ) I had plastered myself with B12 patches and was sucking those B12 methylcobamin lozenges like mad! When the results came through the private G.P said that my B12 serum results were Sky-high, but the IF result was positive.= I had P.A. You must not be fobbed off if the IF antibodies do not show up. You can still have P.A. You have all the symptoms (no I don't mean all -there are about 20!) Yu have certainty a 50% chance of them showing up. But you doctor SHOULD know about this.
Thanks I'll definitely ask about them when I next see her. Just want to get better so I can go back to work - had to beg her to sign me off this week as I'm still feeling too disorientated to drive! Don't want to risk driving while feeling like this in case I have an accident as insurance is invalidated. Think I'm going to have a hard time negotiating this again next week if this symptom hasn't improved as she said there is 'no clinical basis' to sign me off
You are right not to drive when feeling so disorientated . If you cannot get enough B12 injections, come back here and we will help. Your doctor seems to know so little about P.A. And B12 deficiency. Has she told you that you need to take plenty of folate (Green veg or supplement ) B9 works together with B12. Do you have tummy problems ? They also come with P.A because of low or no stomach acid. /
My folate levels came back normal at 6.8ug/l (range 3.1-19.9) and my ferritin was 42ug/l (range 11-307). They were all classed as normal and no further action. I don't seem to have any tummy problems as such (Have to rush to loo straight after eating first thing in morning then ok rest of the day). Have had gallbladder removed and a hernia op within last 5 years but otherwise no issues that seem to bother me.
From being on the Thyroid UK forum for 4 years I have read - daily - that Folate needs to be mid-range so about 10 in your case and the Ferritin too - so a long way to go. Often the case with B12D.
Gallbladder issues are linked to low thyroid often - due to lowered metabolism in the body - including the liver.
"My question is whether the dizziness/disoriention, tinnitus, pins and needles and forgetfulness are classed as neurological symptoms?"
I think these are normally classed as neuro symptoms. See B12 deficiency symptoms lists.
pernicious-anaemia-society.... see Symptoms Checklist
Some people contact the PAS. They are helpful and sympathetic and a good source of information including some aimed at medics.
pernicious-anaemia-society.... 01656 769 717
martynhooper.com/ Martyn Hooper is the chair of the PAS. he tested negative more than once on IFa test before testing positive.
useful B12 books
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper
Could It Be b12 by Sally Pacholok and JJ. stuart
Fbirder has a useful summary of mainly UK B12 documents. If you pm him I'm sure he'll send a link.
"loading doses of 6 over the course of 2 weeks then 3 monthly"
This reads like the UK standard treatment for B12 deficiency without neurological symptoms. People with B12 defic and neuro symptoms should get extended loading doses and then injectiosn every 2 months.
UK B12 treatment
patient.info/doctor/pernici... See Management section
BCSH Cobalamin and Folate guidelines page 8
"Have had gallbladder removed and a hernia op within last 5 years"
Do you know if nitrous oxide was used in your operations?
Hi I have absolutely no idea and don't know how I'd go about finding out. I've had at least 4-5 general anaesthetics for various minor ops over the years plus a recent sedation for wisdom tooth removal - is there a possible link and would you know how I could find out?
I am glad I'm commencing treatment but Dr is still not convinced I have B12 deficiency despite all other tests coming back normal (viral, thyroid - free T4 and TSH, CRP, glucose and FBC). Given that she doesn't think I'm deficient and suspects it's a reaction to stress/anxiety I think I'll have a hard time convincing her to extend the loading doses past the basic guidelines. I'll take a proper look at the links and maybe print some off ready for my next visit.
What were your levels of the TSH and FT4 ? You really need the FT3 checked along with Thyroid anti-bodies - anti-TPO and Anti-Tg. T3 is the most active thyroid hormone and needed in every cell of the body - so when it is low - then things begin to go wrong. Hashimotos is the most common of all thyroid conditions globally and yet they haven't tested your anti-bodies - so how would they know.
When I was diagnosed with Hashimotos back in 2005 - the TSH - FT4 - FT3 were all in range - however the anti-bodies were sky high. So treatment commenced.
Normal is an opinion and NOT a result. The GP's mean - in range - but it is WHERE you are in the range that is important. Bumping along the bottom is not good. B12 deficiency can become a neurological if left undiagnosed or untreated. Do look at the videos under the heading Films in the B12D link given to you by sleepybunny - the first one It will make you so aware of the B12 importance.
When it comes to thyroid and B12D/PA we really have to read and learn as much as possible. So many excellent people here who if you follow their advice will have you well in no time.
Happy to help .... am not a medic - just a Hashimotos sufferer with a B12 issue. In fact my B12 was around the 300 mark for years. In 2007 I had surgery on my spine for stenosis - I now think it was B12D. I live with the consequences and have weekly injections and suck lozenges !
Hi the levels for TSH were 2.47mU/L (range 0.54-4.25) and Free T4 were 11.2pmol/l (range 8-16) so both pretty much in the middle.
Your TSH would be considered high in a healthy person and the FT4 should be much higher - around 14. No FT3 result or anti-bodies. Really important to have those too.
Everything you need to know about the thyroid and other conditions linked to low output in the above link.
Formula for calculating FT4 - 16 - 8 x 0.75 + 8 = 14
Thanks I'll raise that with her when I see her. Unfortunately the NHS is so stretched that I guess they only commit treatment resources to those with clinically proven blood results outside the range but it's worth a try!
I do not think it is about the NHS being stretched. It is down to very little training at Medical School about the Thyroid and most Endos seem to specialise in Diabetes.
Docs are governed by Guidelines - so their hands are tied. Gone are the days when Docs looked and listened. There are almost 40,000 people on the Thyroid Forum - and I read everyday about the poor testing and understanding of Thyroid issues. The TSH is a poor marker of thyroid activity. The Dr who did the research is on the Forum for Thyroid UK and goes by the name diogenes - click onto his name and read his research papers - that have been peer reviewed and published. Also not paid for by BIG Pharma.
I would look at the link I posted above and have a think when you have the time and energy ....
Doctors don't understand that the anaemia and macrocytosis don't need to be present for you to have Pernicious Anaemia. Low B12, whatever the cause needs to be treated. I would agree that some of your symptoms are neurological, and if your doctor won't allow you more injections, I suggest you buy sublingual lozenges or a spray. In this way, you can top up your levels between injections.
Best wishes MariLiz
Tinnitus and pins and needles (parathesia) are most definitely neurological. Some lists tend to distinguish between neuro and psychiatric while others link them together because it's still down to nervous system damage whether it's in the body or the brain.
I appreciate the impulse to excuse the NHS on the grounds of limited resources - I work for it and I know how bad thing are - but please don't. We are all in an absurd situation where we suffer (a great deal in some cases) for want of something that is cheap, safe and very effective. It would be even cheaper if injectable B12 were available from the pharmacist without prescription (several petitions are doing the rounds if you care to sign them - anyone got the URLs?).
As for the stress theory it is too convenient on its own. One of my theories about auto-immune conditions (which is what PA is) is that they may triggered in genetically-susceptible individuals by emotional trauma. Don't have anything to back that up beyond personal experience and observation - anyone want to weigh in?
Your B12 levels and symptoms are entirely consistent with deficiency and I wish you well in securing proper treatment.
Im male age 43 . after 3 decades of binge eating white pasta beer pizza thinking nothing could slow me down , i beleive i have gluten intolerance and bloaty leaky gut and numbness tingling in hands. The ER blood work up said b 12 levels are fine ( along w everything else)....but i later learned from smart tv the malabsorption from every-night alcohol prevented b 12 absorbing via megoblastic anemia among other nutrition. Nuerapathy. Mri lesions on spine. After two months of removing all gluten and inflammation foods and starting b 12 (80% methylcobalamin 20% adenosylcobalamin) 5000 mcg my symptoms are going away. Olive oil may plug leaky gut. Nightly tumeric ginger honey warmed to 145 degrees cleared my gut now regular stool lost 15 lb around midsection. Routinely waking up in middle of night I'd take b 12 which relaxed my nerves fell back asleep soundly with dreams. Morning wood. Waking up with a bolt of energy through nerves. I had major fatigue for a decade that went away quickly. Im surprised the ER doesnt know anything about b 12 , candida overgrowth and gluten intolerance. Im now on a mission to restore my microbiome with many green plants arugala salads a liter of olive oil a week smoothy vitamins etc...ive been listening to guy who wrote the Plant Paradox , he says lichens cause leaky gut. Basically skins of kidney beans and other beans. Tomato seeds and skins. I eat my fare share of bean burritos with salsa on West coast. Im not sure what i think. Anyway im wishing everyone good luck on their nutrition adventure. I believe we are in an epidemic of dietary diseases and we all need nutrionalist and not surgeons.
You've actually replied to a post that is two years old so nobody in the forum will see what you've written. I only,spotted your reply because I happened to follow this post two years ago.
If you go to the main screen for the PAS forum (the screen that appears when you first enter the forum) and click on the blue 'write' button you can copy and paste the above and post it as a new post so that everyone can see It...and reply.
Be aware that this forum is concerned with Pernicious Anaemia and the B12 deficiency it causes, so please try and put in a title that encapsulates the question that you most want answered.
For instance, do you think that you have B12 deficiency...and are you wanting advice about how,to get this treated?
If your question is more concerned with diet, there may be a more appropriate community forum in which to post your question. You can search communities by clicking on the 'my hub' button.
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