Still fighting for injections

Still fighting for injections

Hi all

My intrinsic factor result came back fine so told in range again no further action , so went to see dr today , she said no to injections and to try supplements , so I've ordered Jarrows.

Should I change surgeries or self inject or I don't know!? I'm at a loss as my b12 is 168 I've asked 3 Drs all said NO! I told her we want another baby she said fine go ahead. I'll add my latest private panel to just remind U of me results . I'm taking folic acid 5000 so I'm thinking ahead!! She thinks im a hypercondriac so I feel I should stop fighting :( thanks in advance x

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  • Hi Ndobins OK your "intrinsic factor result came back fine so told in range again no further action" but your B12 level certainly isn't. It's possibly related to your thyroid problems.

    Has your doctor not tried to find out why you are so B12 Deficient?

    Do you have any idea why you are so B12 Deficient?

    If you have an an absorption problem the supplements might not be sufficient especially if you try for another child.

    I'm not a medically qualified person but there are people om here who will be able to give you good advice and I wish you well.

  • No she suggested that this could be my normal level, but I was 550 a year ago...I think it's thyroid related too as my antibodies are slightly raised and I know they are connected. She basically told me to deal with what I've been dealt and get in with it! She says if I try suppliments happy to monitor me 😏 But I know once I start lozenges I can't get tested again as results will be skewed , I'm tempted to change surgeries πŸ€”:)

  • Hi Ndobbins. Don't know what your GP is thinking of! You have blood tests marked B12 insufficient. Insufficient means not enough! And by all accounts, your levels are still dropping.

    And you have the symptoms of B12 deficiency. All the guidelines say treat the symptoms, not the blood results (see NEQAS guidelines in the second pinned post). Your GP obviously doesn't know this.

    Also - issues to do with B12 deficiency can result in infertility - and you want a baby.

    I really think that you need a new GP and suggest you seriously consider changing if there's another one in your area.

    It would be a good idea to read the PAS pinned posts, highlight anything to do with your case, and take these along to a consultation with your new (or current) GP so you can present your case, and have the evidence to hand.

    Don't know if you are aware, but it is dangerous to take folate if you are very low or deficient in B12. The B12 deficiency must be addressed first, before any folate supplements are taken, to prevent potentially irreparable neurological damage (sub-acute combined degeneration of the spinal cord).

    And I see your thyroid antibodies are very high (Hashimotos?)...assume this is being treated?

    Also - autoimmune diseases tend to come in groups - if you have one, more likely to also get another (like PA). Your GP should be thinking about diagnosing you with anti-body negative PA (but has probably never heard of this - most haven't).

    And I really think that as you are planning a pregnancy, it would be much better to get all this sorted out by a competent GP (with appropriate testing, diagnosis and treatment) rather than go it alone.

    You certainly don't sound like a hypochondriac to me...if you are, we all are. And there are lots of us here.

    So please don't stop fighting for the treatment you need to get well so you can have a happy healthy pregnancy and deliver a splendid little bundle.

    So...a new GP?

    Please post again if you need any more help or support (i.e. if you need pointing to guidelines that you can show your GP to try and get treatment).

    Good luck πŸ˜€

  • Hi Foggyme

    That really brings it home. I'll stop folate for now

    No my hashimotos has never been diagnosed or even talked about , she said no need for further testing. That has risen it was slightly lower than what I posted .

    Yes new gp fresh start maybe, thank u for reassurance . What is the treatment apart from Levo? Should I be being checked further ? :)

  • Hi Ndobbins. Anti-thyroidperoxidase antibodies are high at 66.9 (normal is below 34), marked in red on your blood test.

    Know very little about thyroids so a good idea would be to post all your thyroid results on the Health Unlocked Thyroid Forum. Some. Very good folks there who will be able to advise on your results and let you know what your GP ought to be doing in terms of treatment.

    B12 deficency is quite a complex condition so please do come back and ask as many questions as you need to - especially in terms of getting a new GP on board to treat you πŸ˜€.

    You'd be surprised and horrified how many times we hear of people who struggle to get treatment, some for many many years...so keep at it and pop back here if you feel yourself flagging or running out of ideas.

    Your current GP has done you no favours πŸ˜–

    Good luck πŸ‘

    P.s. Might be a good idea to ask your current GP for a copy of your medical records before you move surgeries. Would be useful to know what your current GP has recorded in your medical records so you know what things you want addressing (and maybe what myths you want to dispel - like the ridiculous hypochondriac label - and who knows what else). It's your right to have a copy of your records but some surgeries make a small charge for this (and some don't).e

    Another p.s. Forgot to say - thyroid and B12 conditions often go hand in hand and have lots of cross-over symptoms. But both have to be treated as they are different conditions. Your new GP should also want to investigate to find the cause of your B12 deficiency πŸ˜€

  • Thank u, calling into new surgery now so once I've been I'll let u know πŸ‘πŸ˜Š im so grateful for the help x

  • Well done and good luck πŸ‘πŸ‘

  • "My intrinsic factor result came back fine - "

    I believe, others will confirm, that the Intrinsic Factor test is only 50% accurate for those declared "fine."

  • I am completely shocked that GP is not treating you with B12 injections and thinks it OK to go ahead with another pregnancy whilst B12 is so low ! Although folic acid is recommended during pregnancy it is advised to take, it will have also masked the B12 result, and, as Foggyme says, is not a good idea whilst B12 is so low.

    gbhealthwatch.com/Nutri...

    "High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood." :

    .............

    Haemotologist's quote:

    "If you treat someone with B 12 def. with folic acid, you can either precipitate neurological abnormalities or, if the patient already has neurological abnormalities, you can make them worse. So folic acid should never be given empirically unless the B12 status is normal."

    cmim.org/pdf2014/funcion.ph... :

    Page 4 - under 'Treating concomitant deficiencies'

  • Ok thank u, been on it 2 weeks and bloods taken well before started it...

    Have kicked out on 2 nights ( poor husband and cat!) is this a symptom ? :)

  • Really not sure whether this is a symptom Ndobins πŸ€”

    I only know that with such a low B12 result, other symptoms and deficiencies, your GP seems unconcerned with your well being. I would, as Foggyme suggests, consider changing? You need to find the cause of B12def. as well as treat your vitamin D deficiency with high vitamin D3 plus K2, to make sure it goes to the bones and not the blood.

    Indigenous societies long ago used to make sure a couple embarking on starting a family were fed the best and most nutritious food from the rest of the tribe. We seem to have lost sight of so much, when modern medics can only test, prescribe with drugs and not look beyond the end of their noses!

  • I'm defo changing doctors πŸ‘

  • Good for you ndobins. The other consideration would be to try a g/f diet - it could help reduce TPO antibodies as well as absorption of nutrients from food.

    I'd also recommend Dr Datis Kharrizian's book, 'Why do I Still have Thyroid Symptoms when my Lab Tests are Normal?. He recommends this as a strategy for healing 'leaky gut', which many researchers now believe is the source of autoimmune disease.

  • Hi Ndobins...symptoms of B12 deficiency can include irritability, mood swings, anxiety, depression...and also, a desire to be alone and avoid social interaction...a real package of nasties. So yes, your husband and cat may be on the tail end πŸ˜–.

    I'm usually quite calm and even tempered (I think πŸ€”) but before B12, my goodness, I didn't recognise myself...snappy would be an understatement. And I had to constantly battle with the hiding instinct (most often due to sheer lack of energy).

    But take heart, once treated, these symptoms can be brought under control.

    πŸ‘πŸ‘

  • I have all those symptoms 😏 Looking forward to seeing a new doctor and getting some help x

  • "Should I change surgeries or self inject or I don't know!?"

    Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage. I really can't understand why GP is not treating you if you are symptomatic and have "insufficient B12"

    I stayed for years with a surgery where I had bad experiences because I thought it was my fault and now regret not changing sooner.

    In the past I have written polite letters to GPs when I had a query. My understanding is that letters have to be filed with your medical notes so are a record of issues being raised.

    Following link might be helpful if writing a letter to GPs. I would add that it does not seem to mention the BCSH Cobalamin and Folate Guidelines which I do mention if writing a letter about B12 issues.

    b12deficiency.info/b12-writ...

    For anyone who writes to their GP about B12, fbirder compiled a useful summary of quotes from B12 documents that might be helpful. link to summary on his profile page and one in third pinned post.

    Have you read the BCSH Cobalamin and Folate Guidelines? If you scroll through it, there are flowcharts about half way through that show the recommended process UK doctors should follow with someone who as low B12 and/or is symptomatic for B12 deficiency. The flowcharts mention when to diagnose Antibody Negative PA (Pernicious Anaemia where the IFA test is negative).

    b-s-h.org.uk/guidelines/ Think "Diagnosis of B12 and folate deficiency" is the right one to click on.

    I gave my GPs a copy of these guidelines and a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

    I am not a medic just a person who has struggled to get a diagnosis.

    Unhappy with treatment?

    citizensadvice.org.uk/healt...

    nhs.uk/NHSEngland/complaint...

    HDA Patient Care Trust

    This charity offers free second opinions about medical treatment and diagnosis. They are usually quick to respond to enquiries.

    hdapatientcaretrust.com/

    HDA pct tel no 0207 935 8366

    HDA pct Online contact form hdapatientcaretrust.com/con...

    See Management section in next link for info about folic acid potentially masking effects of B12 deficiency.

    patient.info/doctor/folate-...

    Link about B12 and pregnancy.

    b12deficiency.info/b12-and-...

  • I've read the guidelines and printed them off, in bag for yesterday but she was so good at talking me round about range and blah blah I just left! She has seen me so often I think I just annoy her now!

  • Your antibodies show Hashimotos Disease, but your thyroid is not showing signs of obvious stress yet, so gps will not take notice of the antibodies. There is no treatment for it other than keeping nutrients optimal. Check for celiac before going gluten free ... you can get celiac tests over the internet.

    There is a big overlap between PA and Hashis, so you may have both. But Hashis can produce low stomach acid, so it could be you are developing gut problems before the thyroid starts to fail.

    Your B levels definitely need optimising before pregnancy, and keep an eye on ferritin, get it a bit higher before pregnancy, and when you get pregnant I think I might ask for a thyroid check during, or order one privately, because you are probably at higher risk of developing a thyroid problem post partum. And if there is any depression or general du lally feelings post pregnancy I would demand another TSH check, pointing out the antibodies. Good that you know all this, though.

  • Finally I feel it's explained thank u... so how will I know it's under stress officially? It does seem strange both are happening at the same time. 1 year ago I was on 100 Levo and my t4 was 20, now I'm on 125 Levo and my t4 is only 11. And it's dropped from 17.5 to 11 in 1 week, will my antibodies go up? How will I know? Defo think the depression is linked to thyroid after Daisy was born.

    Why don't they say this , I've asked 3 doctors about the antibodies and they say no don't worry... that's it!!!!!! If it wasn't for the neurologist suggesting the antibodies test I never would have known about b12. As I did a private one 2 months later to see if it had changed and there was the b12. That dropped from 175 to 162 in a week also, I thought it might be the stomach acid rather than pernicious anemia as my Intrinsic factor is fine and my FBC. I eat really well.

    Thank u again 😊😊

  • OK, that was stupid of me, I didn't realise your thyroid was already being treated, but you didn't know you had the antibodies. You have autoimmune thyroiditis, which is the usual variety. Your TSH is good, your T3 could be a bit higher. There's a sub section of Hashis patients who don't feel well until they add in some T3, but you might not be one, and it is v hard to get on the nhs due to the vast expense.

    If you haven't already, go to the thyroid uk forums and search for pastdiscussions on treatment in pregnancy. There's a lot there which would be useful for you.

  • Well!! I actually am meant to be taking it but I stopped 6 months ago due to the dizziness and sweating... I still have it and the dr hasn't a clue I stopped so maybe I could try adding it again? I'm meant to take 10 mcg a day in the morning . You see I still felt tired so got referred to endocrinology and he put me on it ( before my antibodies was tested ) when I was referred my thyroid level were great. T4 was 20! Now it's gone down to 11 . πŸ€” Tricky as to know whether to try or not

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