Just want to say hello! And hope your all well. I am needing some advice regarding my serum b12 and seeking appropriate treatment. To give you a brief background: my name is Louise, I am 22 years old and have been diagnosed with Hypothyroidism. Since the age of 8 years old, (and most likely before this from memory)I have been struggling with low energy, oversleeping and still feeling tired, depression and anxiety, racing thoughts, visual side hallcinations, muscle and joint pain in my legs during day and night, low blood pressure, very cold hands and feet, bouts of insomma, low concentration, anaemia,repeated urinary tract infections, urine incontience, repeated stomach upsets with diarrhoea, irregular periods extreme sensitivity to light and hair loss amongst others. I find that I cannot wake up in the mornings, I feel exhausted in the day and cannot sleep at night.
I had an emergency operation at 8 yrs old to remove my appendix and I developed septicaemia and gangrene in my appendix. I'm very lucky to be alive! I thought I would mention this as a member on the thryoid uk forum said that if nitrous oxide was used it would inactivated my b12.
My last blood test results were:
Serum b12: 227 (bottom scale 142)
Ferritin:35.7 (bottom scale 20)
Folates: 10
Tsh: 2.5
(Sorry cant remember the rest)
I spoke to my doctor about these results in early September as i was told my blood tests were normal. I argued that my b12 and ferritin were low, but she said they were fine and intact she wouldn't treat my b12 if it got to 100 still. I felt overwhelmed by this so didnt argue with her but asked for iron tablets which she eventually gave.
Trouble is, I'm getting more and more unwell. I have a feeling I may have a b12 deficency. I have started taking jarrow b12 1000 sublinguals, floradix iron, vitamin D spray and b12 spray. However I'm struggling to take it as I'm so low in my energy and have such a crap memory i forget to take them. I also have little appetite at the moment, so it prevents me from taking the iron.
Anyway I have looked at guidelines on b12d.org about deficency markers and it looks as though I'm in the moderate deficency catogery. Does this mean that unless my b12 levels go below 200, I won't get treated? I really feel I need some treatment now as My neurological symptoms are getting worse
Ideally I would like to start a course of injection to help me get my energy back (it's so low at the moment) but not sure if I'm entitled to it.
anyway any advice would be greatly appreciated.
Thanks,
Louise.
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lulujeanne
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Hi Louise! You prob don't want to hear from me again as I've answered you before over on Thyroid UK, but I'm giving everyone this link today because it's so good, and tells you everything you need to know, and leads you to other places you need to visit:
Hello again Hampster, thanks for your reply, no dont be silly, you helped me so much before and if it was not for you I wouldn't be looking into b12 deficency. I have been on the PA site and been through the symptoms checklist, and it was amazing, i have the majority of the symptoms of PA. Infact I have more symptoms of b12 deficency than hypothyroidism. I am now trying to gather evidence for my GP appointment next week to argue for injection treatments, as my health is getting worse (see please my reply to suki65). I am thinking of having full tests for PA, to detirimine if its autoimmune. Could you tell me which tests I would need again?
I've left a message with the PAS office, i'm hoping they can give me some guidance too.
I am sorry you are feeling so bad Lou, I have to say I wasn't ever sure about your hypo diagnosis as it didn't feel right at the time, but equally it is very common to have both conditions. There is really loads you can do for yourself if the doc won't help, PAS will definitely have lots of advice. One of the issues with younger people is that docs just don't believe you can have PA when you're young, which is of course nonsense. Here is some info on Juvenile PA:
However, if you have been supplementing with sublinguals etc. this will skew any test results. You need at least a month off them according to St Thomas' if having the Active B12 test.
Or you could just get treatment privately, here is the story of one young PAS member:
please watch the hour long video B12awareness.org the book is very interesting yes i think you are deficient mine was 276 2 months ago b12 now 648 and feeling a little better but you need folate alongside b12s
Thanks for your reply. I will watch the video. Can I ask how you level was treated? Tablets or injections? I'm hoping to persuade my doctor to prescribe me b12 injections as I am getting iller and iller and most days I can barely get out of bed and eat properly due to really low energy. I'm despirate to get better. I've been having panic attacks, feeling faint alot, muscle pains and brain fog all the time. I'm 22 I shouldn't be this unwell trouble is im that tired I can't even get dressed some days and regularly forget to take my vitamins and don't eat enough to take them with (don't have the energy or appetite to cook formyself ). Injections would be ideal because it would allow me to get my energy back and boost my b12. I'm even thinking of getting the tests done for PA. Probably going private but I think as hampster pointed out before on thyroid UK site there's something significant with my B12 as I have more syptoms of PA than hypothyroidism.
I don't think my docs gonna give me b12 injections but im trying to get as much evidence as I can to fight for them.
Even writing this message is exhasting me so sorry for mistakes.
I get my b12 supplements from holland and barrett Vitamin B-Complex & B-12 Tablets i take six in a day but should have been taking folate also Folic Acid Tablets (400ug)
ask if they have checked your homocysteine level please dont accept that level of b12 i have read and heard your level should be above 450 try and get your level above that you should be able to do it with the b12s by taking 6 a day but if you want to take 2 to start with then increase a little each time but make sure you ask your doctor what they are doing about your illness ,i am having to pester so much and i am now beginning to get annoyed as hampster1 on here has done more for me in 2 messages than in 2 years of going back and forwards to the specialist
good luck and keep posted my next appointment is 22nd october lets see what they say to my questions
I've contact the PAS, they said they feel I have many symptoms of PA, but the serum blood test ive had wont show this. They suggested I think about seeing Dr Riar privately. But to be honest, I simply cannot afford this at the moment I am already paying to see Dr skinner privately for my thyroid.
So i decided to see my gp again, and argue my case further. I printed off some treatment protocols and articles from the B12d charity website. I cited these to the doctor, as they suggested that even if a person is over the clinical deficiency marks, if they are displaying neurological symptoms then there's no harm in trialing treatment.
My gp said she still doesnt think I have a b12 deficency. She showed me my last serum b12 again, it was 295 before taking any suppliments.. i though 'oh no! sure it was lower on my printed out results' i gave these to Dr.S. though. I still argued with her, as I have numerous symptoms of PA, and in the end she did offer oral b12. But i said no, i want a trial of b12 injections, and justifed this with my evidence. In the end she said she can't do this, because my clinical markers dont justify this. So shes asked me to see the practice partner GP and state my case to him. If he approves it (its all about cost - which she admitted) then she will monitor me.
So i do feel deflated at the moment, not sure if i am a hyperchondriac or on the right track with this. My thyroid medication is not working at the moment, i am getting worse. Feeling faint all the time and low in myself. I am going to continue taking oral b12, iron and folates. Very frustrated the moment!
if worse comes to worse, ill go private if i have to.
In the book Could it be B12? Sally Pacholok says that anyone with symptoms of B12 deficiency and a level of less that 450ng/L should be treated. Serum B 12 levels are not the definitive indicator for B12 deficiency.
Hi, thanks for replying, I will order this book as a few members of the thyroid forum have recommended it to me. I am going to look more into active b12 testing, I can't afford to pay privately at the moment, although it appears to be my only option!
Hi Louise, If you have started taking b12 supplements the active B12 test might not show any deficiency. Have you looked at the B12d.org website, there is a symptom check list there that will give you a good indication that you have a problem. There are two other tests that will show a problem but as you have been taking B12 they might not be as definitive as you might like. One of these tests Homocysteine is commonly done on the NHS and is not expensive. Your doctor might do that, the other is a MMA test and that is a little more expensive. Do buy the book, it is available on kindle which is a bit cheaper, but you can also get a lot of info from the B12d.org website and there is a great support group on facebook: facebook.com/groups/B12Defi... where you can ask questions. Depending on where you are Dr C of the B12d.org might be able to help but you need to investigate the site and watch the videos so that you can make a decision for yourself. It might take a while to get an answer from them as they are busy. If you buy the book details of the tests are in chapter 11. Good luck, Michele
Hi Michelle, ok that's something i will consider. How long would i need to not take suppliments for in order for an active b12 test to be accurate?
I have been to the b12d website, i took the treatment protocol and a few other things I printed out to my last GP appointment, she looked at them, but still referred to her BNF. I took the symptoms checklist and I had 6 body systems affected and neuro signs. I said to her that according to this, even though my b12 is at 295, i have signs, so a theraputic trial should be commensed. She said she couldn't do this as there's not enough clinical evidence... so i'm going to have to take my evidence now to the partner of the surgery and see if he will approve treatment. I do need more tests though like MMA etc so I will have to look into these, as an serum b12 wont be enough to prove or show if i have a b12 problem or not.
I just feel so deflated by this, It's like im constanly battling with GP and I don't know if I'm on the wrong track here... maybe its 'just depression' but I have alot of physical symptoms too which they dont take the time to consider.
I have joined the group on facebook, thanks for your help and suggestions x
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