Posted , 6 users are following.
Just wondering how long it could take for some of my symptoms to go or at least improve. Brain fog, muscle pain, headaches, tiredness to name a few. I know their is no timescale to this but just after a general idea of what to expect, I have only being supplementing with a good quality sublingual for 5 days (I'm very impatient I know) any thoughts or advice would be appreciated ??
1 like, 17 replies
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marion29181 Passey64
Posted
I think we're all different, and it also depends how long you have been at a low level. Personally speaking I was very unwell when my low B12 was detected, and it took me around six months for me to begin feeling better. Around eighteen months to reach the best I could feel on the three monthly injections. My GP agreed to more frequent injections and I have continued to feel even better. I still think there is nerve damage that hasn't been healed, and possibly never will be. This leads to numbness in my feet and legs, especially when I get overtired. Some aspects of my memory have not returned. I always loved going to quizzes, and had a very good memory, nowadays it's more of a struggle.
ATI2D1 marion29181
Posted
WHAT WAS YOUR B-12 LEVEL WHEN YOU WERE FIRST DIAGNOSED AND WHAT SYMPTOMS DID YOU EXPERIENCE? THE THOUGHT OF DEALING WITH THESE OVERWHELMING SYMPTOMS FOR 6 MONTHS PLUS IS WAYYYYYY TOO DAUNTING.
marion29181 ATI2D1
Posted
My level was 176 at diagnosis, and my main symptoms were exhaustion, numbness, pins and needles, brain fog, breathlessness. I thought I must have been developing dementia because I couldn't think straight, or organise my day. I also had regular infections, threat, chest, skin, and had been on several courses of antibiotics. The aches and pains meant I never felt like doing anything but sleep.
ATI2D1 marion29181
Posted
MY CURRENT LEVEL IS 208, BUT I HAVE BEEN ONE WHO HAS STARTED HAVING NEUROLOGICAL SYMPTOMS ONCE MY LEVEL DROPS BELOW 400 SO BEING AT 208 ALTHOUGH NORMAL FOR THE AVERAGE PERSON IS ROCK BOTTOM FOR ME. I HAVE FIBROMYALGIA, RHEUMATOID ARTHRITIS, PERIPHERAL NEUROPATHY, AND HERNIATED DISCS IN MY BACK SO I AM NO STRANGER TO PAIN AND HAVE HAD A PRETTY SUBSTANTIAL HISTORY WITH NERVE PAIN, BUT THE PAIN THAT I HAVE EXPERIENCED WITH THIS PARTICULAR DEFICIENCY EPISODE IS MORE THAN UNBAREABLE.
I HAVE BEEN HAVING EXTREME FATIGUE, SEVERE LEG/BACK PAIN, VIOLENT MUSCLE SPASMS WHICH GETS WORSE WITH ANY KIND OF ACTIVITY. I HAVE BEEN HAVING QUITE A FEW OTHER SYMPTOMS BUT BEING THAT I HAVE SO MANY OTHER HEALTH ISSUES, I CAN'T REALLY SAY IF IT'S RELATED TO THEM OR THE DEFICIENCY.
marion29181 ATI2D1
Posted
The awful thing is that sometimes our symptoms do worsen before they improve. I gather you are self treating as you don't mention having injections?
i have back problems too, and the muscle spasms from that aren't so bad now I have more frequent injections. It is difficult to separate which symptom belongs to which illness when you have several. The peripheral neuropathy could easily be due to low B12, and when you realise that low B12 causes a breakdown of the myelin sheath that covers our nerves, your history of nerve pain means you could be needing injections. Is your doctor not prepared to give you injections, even for a trial period?
Have a look at the Pernicious Anaemia Society website, there is a full symptom list on there. You could print it off, tick all that apply to you, and take it with you to the GP.
ATI2D1 marion29181
Posted
I AM CURRENTLY RECEIVING INJECTIONS, MY DOCTOR HAS ORDERED THAT I HAVE AN INJECTION ONCE A WEEK FOR A TOTAL OF FOUR WEEKS, THEN ONCE A MONTH INDEFINITELY. THUS FAR I HAVE RECEIVED TWO INJECTIONS. PRIOR TO THE DEFICIENCY I WAS TAKING 2,500 MCG OF B12 ORALLY, YET I STILL BECAME DEFICIENT AND THAT IS CONCERNING FOR ME. I HAVE REPEATEDLY HAD THE SAME ISSUE WITH MY VITAMIN D LEVEL AS WELL. I GUESS I'LL JUST HAVE TO DIG IN MY HEELS FOR A LONG AND PAINFUL FIGHT. 😯🙁😢😢😢😭😭😭
marion29181 ATI2D1
Posted
ATI2D1 marion29181
Posted
marion29181 ATI2D1
Posted
Well I'm not saying this is what you have, but there is a severe result of low B12 over a long period. It's called sub acute degeneration of the spinal cord. The gentleman who founded the Pernicious Anaemia Society in the U.K. suffered from this himself. It wasn't until he collapsed in the street that full investigations were carried out, and he got his diagnosis. His name is Martyn Hooper, and he has written several books about low B12 and it's causes and effects.
I am so sorry to hear you are suffering so much and really hope your doctor will be doing the best he can to help you.
very best wishes
Marion
clivealive ATI2D1
Posted
Do you know what your Folate level is as a deficiency in this may well cause the same symptoms as a Vitamin D deficiency.
"Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health. It helps in the production of DNA and RNA, the body's genetic material, especially when cells and tissues are growing rapidly, such as during infancy, adolescence, and pregnancy.
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine
".Vitamin B9 (Folic acid) University of Maryland Medical Centre
I am not a medically trained person but my understanding is pretty basic but it is this: The three components that the body needs in order to create red blood cells are iron, B12, and folate. When you're low on any of the three, your body can't use just the remaining components to go on making cells, so those components continue to exist in the body but not get used. (This lack of production causes anemia).
When you get more of the missing component, the body begins making more cells.
Since it is making the cells from all three components, all three are being pulled from. So it does make sense that, if you were low enough in B12 to have become anaemic, and you've now been given B12, your body is trying to catch up on cell production and is drawing on the folate and iron in your body for that purpose.
I wish you well
ATI2D1 clivealive
Posted
ATI2D1 marion29181
Posted
THANK YOU VERY MUCH FOR THE INFORMATION, IT'S ALWAYS NICE TO KNOW AS MUCH AS YOU CAN EVEN IT APPLIES OR NOT. THIS B-12 DEFICIENCY HAS BEEN LIKE A DOMINO EFFECT, IT HAS NOW CAUSED SOME PREVIOUS NEURALGIAS TO FLARE UP AS WELL AS MY COSTOCHONDRITIS. I GUESS IN TRUE FASHION I WILL TAKE THE ATYPICAL PATH AS ALWAYS.
clivealive Passey64
Posted
How long is a piece of string? Some symptoms may clear up quite quickly whereas others may appear to get worse before they get better as the B12 starts working to repair the damage done to your body.
Have you actually been diagnosed with a Vitamin B12 deficiency and are you supplementing on your doctor's advice?
Do you know what your iron and Folate levels are?
The three components that the body needs in order to create red blood cells are iron, B12, and folate. When you're low on any of the three, your body can't use just the remaining components to go on making cells, so those components continue to exist in the body but not get used. (This lack of production causes anemia.)
When you get more of the missing component, the body begins making more cells.
Since it is making the cells from all three components, all three are being pulled from. So it does make sense that, if you were low enough in B12 to have become anemic, and you're now been getting B12, your body is trying to catch up on cell production and is drawing on the folate and iron in your body for that purpose.
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for 45 years.
Passey64 clivealive
Posted
Sorry I was so vague to begin with. Yes I have been told I am B12 deficient. My score wasn't deemed low enough to start injections and my doctor wants to start me on sublinguals to see if he can increase my levels and improve my symptoms that way. I think he just wants to get me out of his surgery as quickly as possible if I'm being honest.
Iron and folate where fine but I'm going to ask for a copy of my blood tests so I can draw my own conclusion. Is it worth supplementing iron and folate as well to help with my b12 levels even if I have been told I am fine in these areas? It's all very confusing to me.
clivealive Passey64
Posted
Well, if you don't have an absorption problem with your stomach and your B12 levels rise to a satisfactoery level and your symptoms improve sufficiently then your doctor has got it right, but if neither happen you will need to go back with a list of your symptoms and ask to have the B12 injected in accordance with the N.I.C.E. and B.N.F. guidelines on the treatment of Vitamin B12 Deficiency.
As to supplementing your iron and Folate as I said above the two work together with the B12 to make red blood cells and they need to be kept in balance.
Personally (and I can only speak for myself) I have taken 1 – Folic Acid 400µg tablet and 1 – Iron Ferrous Fumerate 210mg as "maintenance doses" every day for more years than I can remember but because of my Pernicious Anaemia (a form of B12 deficiency) I have injections of B12 every three weeks.
If your Iron and Folate levels are "fine" (at the moment) then increasing iron and rich foods such as spinach, leafy green vegetabloes, broccoli, sprouts, peas, beans etc in your diet will help keep the balance.
Everything really hinges on whether the sublinguals work and this may take some time so it would be a good idea to keep a daily "diary" listing your symptoms and grading each one with score from one to ten as to their severity or improvement. Keep this an have it available to present to your doctor should the need arise.
Please do not worry too much. You are taking the first steps to recovery but it may take some time.
I wish you well.