Hi new to this, where do i start. Well my symptoms are back i shall list them
Tremors of hands and jaw
Weak limbs
Tense neck amd shoulder muscles
Vision problems ( rainbow halos, dry eyes, wobbly vision like mirage, coloured spots on vision, static in vision , ghosting)
Feel unsteady
Trouble finding the right words , usually say two words together
No energy
Light headed
Forgetfull
Thin hair
Tittinus
Numb spots on hands
Vibration all over my body
I could list more but i forget half the time ! Even typing this is causing arm pain.
Long story short my folate is 7 my ferritin is 36 amd my b12 was 133.
According to gp my b12 is not causing these symptoms as its not low enough.. i know my own body and i feel about 90! Im 29
What i want to ask is has anybody had there symptoms continue after loading doses and how long till i feel better. Ps i dont know why im deficient gp wont investigate
Thanks so much for reading
Sarah x
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mullane_s86
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There are many more people on the forum with more knowledge than myself. I am so sorry that your GP is lacking in the required knowledge to treat your LOW B12. I have read that after loading doses you can suffer a worsening of symptoms as cells that have been deprived begin to wake up. I had a similar effect - but I did not have the many symptoms you have.
How are you continuing with your injections ? Maybe you will need them more than the 3 monthly allowance by the NHS. You must insist on having them more often. Your GP should be going by clinical symptoms as laid down in the link below....
It is also good to balance all the B's by taking a GOOD B Complex. Your Ferritin is on the floor and should be much higher although you did not mention the range. Are you treating your Iron deficiency ? Ferritin is stored iron in the liver.
Do you have any gut issues that could be causing poor absorption ? Your GP must rule out why you have so many deficiencies and testing for PA would be a start.
You could take a B12 lozenge - kept under the tongue until it dissolves - Jarrow Methylcobalamin from Amazon 5000mcg could be helpful. You can also buy B12 sprays to go under the tongue. These avoid any gut issues.
You may wish to remind your GP that B12 Deficiency is a neurological condition when left untreated as your tinnitus has illustrated.
There is a main website for PAS too - click onto the logo above and you will find more information and contacts. The people at PAS are more than helpful and you can contact them for further advice too.
Do wish you wellness soon. Others will be along with lots of good advice.
"According to gp my b12 is not causing these symptoms as its not low enough"
From what I have read a B12 level like yours could well cause problems.
Recent documents make it clear that a patient who is symptomatic for B12 deficiency should be treated even if their B12 levels are in normal range. See links below.
I gave copies of the above documents/articles to my GP.
Do you know the reference range for B12 in your area? If you have a copy of your results it should state local reference range on that. I get copies of all my blood tests.
As well as folate and ferritin, did your GP order a FBC (Full Blood Count)?
There can be useful clues on the full blood count. I look at the MCV and MCH. High MCV and high MCH can indicate the possibility of a macrocytic anaemia. Low B12 and/or low folate makes red blood cells larger. Low iron makes red blood cells smaller. If a patient has both conditions then MCV may appear "normal" size and a GP may miss that a patient has problems.
"What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
As well as B12 blood test, there are others that can help to establish whether or not there is a B12 deficiency eg MMA, Homocysteine , Active B12
Have you had an IFA test? This can help to diagnose PA (Pernicious Anaemia) but is not always reliable. It is possible to have PA even if IFA test negative.
The symptoms you describe can be found on lists of B12 deficiency symptoms. Tinnitus is usually considered to be a neuro symptom.
People who have neuro symptoms and B12 deficiency should receive more intensive treatment. Info on B12 treatment can be found in BNF (British national formulary) Chapter 9 section 1.2
How many loading doses did you have?
Are you going to have maintenance injections and if you are, how often?
Hi i had 4, 1 weekly loading doses. Felt great the first few days after each, just like my old self.. but then it would wear off. I was clinging on to the hope that once i had all 4 i would feel great. Went to my gp last week he said im to wait 4 weeks to test blood to see where we go from there.. 4th dec will be 4 weeks. But ive heard symptoms can return as blood cells are repairimg themselves.. but gp makes me feel its all in my head telling me its just placebo and i suffer from anxiety. Even though my levels are clearly low.. i thought i had ms at one point. My gp only took my bloods because a doc at A an E wrote to him after i took myself in with terrible vertigo which i had for months and demanded he run some tests. Im at my wits end.. but reading some posts it seems im not alone.
You really need to convince your GP that your condition is serious. Start a journal and add every symptom and score for discomfort. This is real evidence. Yes, you will be anxious but this is also a symptom.... it is NOT something wrong in your head. Most of us have been prescribed antidepressants and sent off to counsellors before our diagnosis!
I am not medically trained BUT I suggest you
1) Begin to take sublinguals (under the tongue from Chemist or Health Foods) to help you cope until you get this doctor sorted out! This will alter any further test result but so will your injections. Doh! The Dr should know that.
2) Read all the links above. Take notes.
3) Keep a journal - just a week will do. See if you can remember after your injections how the symptoms behaved. This is real evidence the Dr needs to know about so he can respond appropriately. If you go in and say I feel terrible that is not as meaningful as presenting him with list. I made my list up as before and after injections....it worked. Dr even filed it for future reference. It is powerful stuff.
4) Make another appointment to see the Dr. Take someone with you who knows you well. They will be able to advocate for you. My Dr said that I may always have been clumsy...my husband was able to say, 'No, that's not true' etc.
5) As you have neurological symptoms insist you be treated according to the guidelines because you want to avoid permanent damage - this is critically important.
6) Don't dally and if it does not work then maybe the PAS society will help you convince the Dr. Alternatively, you look around for another GP but that will take time and it would be better if you were able to educate the one you have!
7) Eat bananas and potatoes for Potassium. In Australia lots of us make a banana smoothie using blackstrap molasses, yoghurt and baby spinach leaves. Add a good quality sauerkraut to your diet. Also, consider avoiding gluten.... more for you to research!
I think it is important to weigh up the pros and cons of self treatment.
My experience of self treating was that it made it virtually impossible to get a diagnosis from the NHS. I felt I had no option though as I was unsuccessful in getting NHS treatment. I am still trying to get NHS to consider that I have B12 deficiency but the doctors just point to the high levels of B12 in my blood. I am now facing funding treating myself for the rest of my life and I only work a few hours due to symptoms.
Are you in the UK?
"Hi i had 4, 1 weekly loading doses"
Have I understood correctly? You had one dose per week over four weeks?
If you are in UK then your pattern of loading doses does not seem to follow the pattern of loading doses listed in the BNF (British National formulary).
if you scroll down to Management section in this link, the info is similar to that in BNF Chapter 9 Section 1.2. Has your GP explained why your treatment was different to that in the BNF? It's fairly cheap to buy a second hand copy of the BNF from a popular online retailer. You can also register to access the BNF.
It's recommended in the BNF that a person with B12 deficiency and neuro symptoms should see a haematologist. Have you been referred to a haematologist?
Details of recommended treatment are also in the "BSCH Cobalamin and Folate Guidelines" Page 29 a diagnosis flowchart may be useful to look at.
It may be helpful to find out what your local guidelines on b12 deficiency management are. Some of these local guidelines have not been updated since the BCSH Cobalamin guidelines came out so there are doctors who are unaware of the BCSH document. Local B12 deficiency management guidleines might be found by a google search, a search on local NHS website or perhaps a FOI (Freedom of Information) request to local NHS.
Local CCGs (not sure of equivalent in Wales, Scotland and NI) should be able to tell people whether or not the BCSH Cobalamin document is being followed in their area.
So did I, but a headscan ruled it out. I have read that B12 deficiency is misdiagnosed as MS sometimes. I have read that MS sufferers sometimes benefit from taking B12. There is a chapter in the book "Could It Be B12" that talks about MS.
Well, my symptoms did worsen for a while after starting the injections. As Marz said, it seems to be due to the cells that have been starved of B12 suddenly waking up. Your levels are certainly low enough to cause all these symptoms. Have a look at the Pernicious Anaemia website, there is a symptom list on there, and they will advise if your GP is being unhelpful. He does sound as though he doesn't understand the implications of low B12. He should be asking for more testing to find the cause. Best wishes MariLiz
Did your symptoms worsen after loading jabs or while you was still getting them? Also when did you notice an improvement? Did it take months? What where your levels? And symptoms? Im struggleing to find people with vision symptoms like mine. Especailly the rainbow halos.
We are all very concerned about you and taking time to seek out people with similar symptoms is in my opinion time wasted. Remember we are all individuals - and if you have looked at the PAS website that has been suggested where you will find the lists of symptoms - there is a note stating that we are all individuals and that some will experience some of the symptoms listed or experience others.
If your GP wants to test you again to see where you are - indicates he does NOT know what he is doing. Your B12 will of course be inflated due to the injections and then he will be say - ah you are fine now so no more treatment is required. I have actually read about that happening and it is dangerous. Doctors take an oath - First do no harm. Your B12 will be inflated for many months after the injections - but the B12 is needed at a cellular level - not in the blood.
Please read all the posts and links when you feel able and begin to follow the advice. Best to make a shopping list of actions that is needed.....
Wishing you all the very best of health soon...........
My vision wasn't badly effected by the low B12 but I did experience some blurring. I would say it took several months for me to feel the full benefit of the injections. My initial level when diagnosed was 176, and once the GP tested and I was over 400 they thought that was fine. It wasn't! I think everyone's symptoms can be different, I was just completely exhausted, and could hardly move on my worst days. I had bad numbness in both feet, which travelled some way up my left leg. I got pins and needles in my hands, and a creeping sensation on my scalp. My thought processes were very badly effected, to the point it was hard to organise what needed to be done each day. I struggled for the right word during conversations. I had burning pains on arms and legs and feet ( when the feet started to get feeling coming back, this burning was severe). Your visual halos may be due to blurring, have you tried seeing an optician? I wear glasses, and am due back to have an eye test, my first since diagnosis. I have postponed going, as I am trialling a change in thyroid medication at the moment. I don't want it to skew any vision test results. Good luck with getting better, but don't expect it to be immediate. MariLiz
Well good news.. went to see another gp at my surgery today armed with all the information you all have given , had my bloods took which even she said she doesnt understand why the other gp has requested as they will ne elevated even if im deficient ( she did them to keep him happy her words ) then gave me an early jab and told me to come back to her in a weeks time to discuss some more loading doses , think she said alternate days till i see an improvement. And all the symptoms i have are definantly from my low levels which she said was indeed low amd couldnt understand why the other gp was so dissmissive.. so overall im very happy and will continue to see this new lovely gp..
Great news that you have found a caring GP who is happy to consider more loading injections.
"Vision problems ( rainbow halos, dry eyes, wobbly vision like mirage, coloured spots on vision, static in vision , ghosting)"
Some patients with these symptoms are diagnosed with migraine. I have read that migraine can be associated with b12 deficiency. I experience some of these visual symptoms myself. The static is called Visual Snow.
My ferritin was 37 8 weeks ago.. i just dont understand the drop. I knew my b12 would be high. But doesnt low iron mean i have pernicious anaemia instead of b12 deficient now? Doc hasnt gave me any iron tabs either. Didnt commemt on it being low. So confused.
Your Ferritin is low - even though you haven't given a range - and they do vary from lab to lab. Ferritin is the stored iron in your liver so needs to be around 80/90 from most of the various results I have seen. So when you need iron in the body - you have little in the store cupboard. You should certainly be treated for this with a good iron supplement. Sorry not able to help you with that - but I have read that taking VitC with the Iron supplement does aid absorption. Also important to be patient as it can take time to build up levels.
The best way to rule out PA is to have the Anti-bodies tested for Intrinsic Factor and Parietal Cells. Also do you have any gut issues which are preventing good absorption ?
First , I would buy a methylcobalamin supplement myself ( this is an active form of b12 which is not available on the NHS ) and start taking this as soon as possible . I would go and buy a jar of the best quality black strap molasses I can find and take a t-spoon per day washed down with fresh orange juice ( the vitamin c in this will help the iron to absorb ) After a couple of weeks , when my b12 level is higher I would add in a supplement of methylfolate ( not folic acid ) . I would also drink the best quality beetroot juice I could find ( home juicing organic beetroots is a good idea ) for the cobalt it contains .
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