B12 treatment query

Hi, I am looking for some advice regarding b12 treatment. So following on from my gp refusing to listen to ma regarding b12 I have changed gp surgery however this gp is also refusing to treat properly. My last results were 301 with a range of 190-900. Last gp insisted my results were mid range. New gp does not believe that my neurological symptoms are down to b12 and has no other reason to offer. I argued the issue of blood ranges and that my diet is high in b12, I took the NICE guidelines, the Pernicious Anemia b12 info, and a guideline protocol from a local doctor (who unfortunately was banned from treating b12 in my area by the powers that be!). He then offers b12 tablets but did say they probably wouldn't work. I argued my neurological symptoms and the fact that the NICE guidelines state injections for neurological involvement. He finally agreed to give me three monthly injections (won't do more for legal reasons) and agreed to refer to a hematologist. He did say they may still not do anything. My query now is do I go ahead with an injection before I see the hematologist or do I wait in case they want more blood tests. I am also hypothyroid and my ferritin and folate were also low but inside the "normal" range. Apologies for the long post!

30 Replies

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  • Hi, i suppose it depends on how long the waiting list is for the haemo referral,,as to wether you decide to go ahead anyway. It might help if you got copies of the results you already have, at least you can take them to the appt as and when.

    As you know there is an element of 'grey area' with the symptoms versus numbers. But any appts you can get your gp to arrange would be to your benefit, even if they turn up nothing, because the more you can rule out as a cause the better.

  • I think it depends...how ill you feel...how much you want to do battle and raise awareness. My experience is very similar to yours, I had to wait 11 weeks to see a haematologist and in the meantime started using a boost sublingual spray ( which works for me). My experience with the haematologist was not good but my GP proved to be more understanding when he got over the initial shock of being asked for more injections. I wish you well whatever you decide.

  • What were the 'legal reasons' your GP claimed prevented him from prescribing more frequent injections? If you have neuro problems, the literature you gave him is clear on the need to treat as frequently as is necessary to alleviate symptoms and prevent damage, regardless of serum test results.

    If I were you, I would put your case in writing and ask for the letter and supporting documentation to be placed on your file, then the practice has nowhere to hide.

    From a comment you made I take it you were consulting Dr Joseph Chandy at one point?

  • He said the NICE guidelines were exactly that only guidelines, and that there can be issues with overdosing. He stated that the three monthly was the standard and what he could issue, unless a specialist said otherwise, and he only agreed to that after I told him I was also a health professional and wanted to have some chance of returning to work in the future. I explained regarding the neurological symptoms needing more frequent injections but he wasn't interested, wouldn't even consider it. I think at this point my only option is to complain. I was not consulting Dr candy but became aware of his work when researching. I am under the same primary care trust though so expected to face issues getting treatment.

  • Download my summary - frankhollis.com/temp/Summar... - it includes a section debunking the 'overdose' BS.

    If he's that worried about legality you should write to him and ask him if he's certain that there's no chance of you suffering from Combined Degeneration of the Spinal Cord. Apparently if you write a letter then that goes into your record, presumably the response (or lack of it does as well. A while after you could casually mention that you'd hate for him to be sued if he refuses the correct treatment.

  • There is no known issue of toxicity with a high serum level of B12. I've been fobbed off with this excuse too.

    I think I may be in a neighbouring CCG area to you. I wish I could get to the B12D coffee mornings which Dr Chandy attends, but I'm at the other end of the county (min. 90 minute drive, which I can't manage).

  • I didn't know about the coffee mornings so I will look into that. I am so frustrated, I was diagnosed with fibromyalgia last year with no blood tests just a physical exam of tender points by a rheumatologist. after fighting to be referred to a chronic pain clinic hypothyroidism and vit d deficiency was picked up. I have lost my driving licence due to the fibro diagnosis and the drugs they give. It frustrates me that they want me to take two expensive anti depressants and a beta blocker that is actually contraindicated with thyroid issues. I think my issues are actually due to thyroid and low ferritin, b12, folate and vit d, but they just won't listen and get annoyed with me when I refuse to take drugs that cause me to be sedated 24/7 but give no improvement to my symptoms. I am starting to get to the point where I am questioning the point in life at all, I am just so sick of being in constant pain and exhausted. I did mention this to my last gp but she wasn't interested.

  • I think your assessment of your own health is probably spot on. I had the same diagnosis of fibromyalgia by a rheumatologist, performed in the same way. The thyroid connection was always ignored, but I think you are right to suspect it may be crucial to understanding many of your symptoms. When I eventually pushed up my T3 to a level that would fell a team of oxen - I have peripheral resistance - and addressed the PA/B12d and nutritional deficiencies, decades of joint and muscle pain diminished quite quickly. (My problems are by no means resolved yet, but that's another story for another day.)

    I'm very concerned that your nerve damage is being ignored: this seems to me to be deliberate neglect, and would warrant a formal complaint - if you feel up to it. As for the beta blockers - yep, doctors apparently have no idea they reduces circulating T3.

    If you can boost your thyroid replacement anyway that would help too. What are you taking?

  • I am not taking anything specific to thyroid support as with only my husband working now finances are at an all time low. I was taking magnesium and malic acid and a menstrual vitamin as my periods are so heavy, but I am having such issues swallowing I am not able to take them at present. I started levothyroxine earlier this year and have not long had it increased to 75mg again wasn't easy to convince my old gp to treat or increase. I am going to look into complaining, I just want to have a chance at getting some kind of life back.

  • I suspect getting your life back, as well as being able to swallow properly, may involve boosting thyroid replacement. If you think levo has any benefit at all and finances could be made to stretch, it can be sourced cheaply online. I have to go now, but I'll find a couple of sources for you tomorrow, if you think it will help.

  • Many thanks for your advice hillwoman, I appreciate and welcome any suggestions you can provide.

  • CarpaBob - How are you taking your T4 ? You need a good level of T3 ..... Click onto my name to read my edited profile as I was once diagnosed with Fibro. In my experience it is a metabolic condition which is helped by good levels of FT3. How much VitD are you taking ?

  • I take it on waking with water, I struggle with appetite so it can often be a number of hours before I eat. Vit d I am taking 20,000 unit capsules twice a week. Gp had prescribed three a week but I am going off the chart recommended to me on this site for my level. I am due a vit d test mid July to check levels. I have also purchased iron tablets which I will try and start taking now but am holding off on folic acid at the minute. My T3 had improved at my last test, whether they will test that again remains to be seen.

  • Am sure you know that B12 needs Folic Acid as they work together in the body. Perhaps you are taking a B Complex that contains Folic Acid or Folate.

    Taking VitC can help the absorption of iron I have read.

    Lets hope the FT3 keeps improving for you :-)

  • Morning CarpaBob.

    I note Marz has left a comment about the need for T3. I completely agree, but it ain't cheap, which is why I suggested bumping up the levo to see if that works for you.

    If you feel okay about buying levo from a Mexican pharmacy, there are some reliable ones I used to use for liothyronine. Try:

    mymexicandrugstore.org, or themexicanpharma.org.

    You could also register on tpauk.com (Thyroid Patient Advocacy), where you can access, free of charge, many useful links for members, including a list of online pharmacies.

    tpauk.com/forum/threads/use...

    If you try asking for sources on the TUK forum, your post will be edited. They require you to ask the forum at large to send you private messages instead. I find that tedious and unreliable, and more than a bit control-freaky. That said, it's a very good forum in other ways, and a lot of us dive between PAS and TUK.

    Hope that helps. As Marz also comments, your B12 is crucial too - but you already know that. :-)

  • Hillwoman - I think I said there was a need for good levels of T3 - not that she needs T3 - at this stage.

    Lots of people ask where to buy T3 on the Thyroid UK Forum and ask for replies by PM. Most buy from Thailand these days and from Greece. The Mexican source has problems I believe.

  • Sorry Marz, I misread your T3 comment - it was late last night.

    Where TUK is concerned, I'm afraid I'm ambivalent about it.

  • healthunlocked.com/thyroidu...

    An earlier thread on TUK.

  • Re vitamins, you can get magnesium citrate as a powder (even without a swallowing problem the capsules are very difficult to swallow) by Viridian. You add it to water/juice. You can get multi vitamins as a sublingual spray.

    All expensive I know.

  • oh do hang in there CarpaBob - yes, its a pity there are not more coffee mornings around. I would love to go/give one - what bliss to talk to like-minded people - meanwhile I love this site. it actually keeps me going

  • Had same issue with GP in March. I gave him all the relevant documents but all he did was refer me to the haematologist. I was so ill, I thought I was dying. I decided I couldn't wait to see the haematologist who would probably ignore it all too, so started on sublingual lozenges. The improvement was amazing and have since moved on to self injecting. I've got my life back, no thanks to the NHS. Could job I did something rather than wait for the haematology appointment as it has been made for mid August! So 5 months after referral, I could've been virtually dead or just completely incapacitated. Been left with some permanent neurological damage but I feel alive now.

    Whatever you decide to do good luck! :-)

  • Same here LtAngua52. Still awaiting consultant appointments! No more B12 from GP. Positively refuses even in light of evidence provided. I also now self inject but suspect permenant neuro damage. But, like you, I'm at least going in the right direction now.

    Good luck...hope you continue to improve x

  • b12deficiency.info/b12-test...

    b12deficiency.info/what-to-...

    b12deficiency.info/b12-writ...

    b12d.org

    pernicious-anaemia-society....

    PAS tel 01656 769 717

    martynhooper.com/

    Has your Gp seen a copy of BCSH Cobalamin and Folate guidelines? I found page 8 and page 29 particulary useful. I also gave GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

  • I did give him some guidelines including the NICE guidelines but he didn't read them just gave them back to me stating they were "just guidelines"

  • Hi CarpaBob what utter tosh your doctor is talking. At least take the three monthly injections on offer and keep on "fighting" for more with all the good advice given on here.

    Can you "identify" with any on the following?

    On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

    Who’s at greatest risk for B12 Deficiency?

    Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:

    Vegetarians, vegans and people eating macrobiotic diets.

    People aged sixty and over

    People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

    People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

    People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

    People with a history of eating disorders (anorexia or bulimia).

    People with a history of alcoholism.

    People with a family history of pernicious anaemia.

    People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

    People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

    People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

    Women with a history of infertility or multiple miscarriages.

    On page 11 in the book "Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

    However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

    At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml .

    I wish you well for the future

  • Utter tosh indeed! Couldn't agree more clivealive.

  • I do have hypothyroidism, family history of b12 deficiency, infertility, Recurrent miscarriages and ibs type symptoms. I will keep fighting 😀

  • Wow CarpaBob I'm so sorry you fill so many of the criteria but at least it's a good jumping off point with your doctor.

    Just make sure that your Folate levels are good before you have the B12 injections as the two work hand in hand together.

    I wish you every success

  • Thank you all for taking the time to reply, I am so very grateful for the support this forum gives. I have written a letter to my doctor and included all the information given to me in this and previous posts. I have decided to keep a very strict daily diary of my symptoms and go ahead with the 3 monthly injections while I fight for more. I have also contacted the b12d charity for advice. I am still very frustrated that they will give me drugs costing in excess of £300 a year when what I want and feel will help costs significantly less!

  • ((())) x 😊

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