Vitamin b12 not being treated

Hi everyone. I have just signed up to this site so I could seek advice from people who are experiencing similar problems.

So, I've been feeling generally Ill for a while and went to docs. I have an overactive thyroid for sure, have endo next week to discuss more about it.

My b12 levels are also low but doctor doesn't want to treat it as she thinks it's linked to the thyroid issues.

Is this right?

I am very likely to have graves and I have vitiligo so after looking right into everything, I have figured that the vitamin b12 could be autoimmune too so I am worried that it will get worse and I will not receive treatment for it.

Any advice would be lovely. Many thanks In advance.

13 Replies

oldestnewest
  • It took 15 years for my pernicious anemia too be diagnosed so I understand how you feel, even my own family didn't believe that there was anything wrong with me. It wasn't until my blood levels dropped so low I went a lovely shade of Frankenstein green and had too have 3 units of blood transfused and spent a week in hospital. I also had a former GP put in my notes that I didn't have pernicious anemia so my b12 injections were stopped. This was very dangerous and I now have nerve damage that I will never recover from.

    Keep fighting, make them listen too you. Only you truly know how you feel and what works for you. Good luck.

  • Unless related to lack of B12 in your diet a B12 deficiency indicates that you have a problem absorbing B12 in the normal way - 99% is absorbed through the ileum.

    Although there is a high correlation between PA (an autoimmune response that attacks the normal absorption mechanism - either by destroying binding agent - intrinsic factor - or the specialised cells - parietal cells) and other autoimmune conditions there is no causal link. If a deficiency has been identified it needs to be treated now regardless of other conditions as B12D is a serious condition, particularly if you are experiencing neurological symptoms as there is a risk that these could become irreversible if treatment is delayed.

    An absorption problem can take a very long time (years or even decades) to result in a full deficiency and the symptoms of the deficiency can occur in different orders and on different time scales. However, things will tend to accelerate as the deficiency progresses.

    You do store B12 in the liver but as the mechanism for recycling it depends on the same mechanism as dietary absorption this will become increasingly depleted as the problem continues.

    There can be interactions between treating B12 and treating other conditions - which includes thyroid conditions ... but most of these seem to be down to drug interactions so careful monitoring of drugs and checking on interactions would be more appropriate than delaying treatment.

    bcshguidelines.com/document...

    see 4th bullet point on page 2 re importance of early treatment

  • Thanks to you both. I have not yet started any medication for thyroid. Or anything else for that matter. What levels are deemed low? Mine are 165 whatever that means.

  • It does depend on what units are being used but on both scales that would at least be at the bottom end of what might be deemed 'normal range' if not underneath it - it also depends on what machine has been used to do the test. If the result is that low and you have strong clinical signs then you are deficient ... if your GP has said that your level was low that probably means that it was outside the 'normal' range - though significant numbers of people have strong clinical indications well into the normal range - and anything around 200-300 from the bottom of the range (again would depend on scale) would be the grey area where people ought to be treated but so often aren't.

    You can find a check list of B12 symptoms here.

    If you have any of the neurological symptoms you should push strongly to have treatment started asap.

    pernicious-anaemia-society....

  • So the results aren't really that low?

    I will check that link now. Thanks

  • your results are REALLY low.

    Generally the battle is getting treatment where there are significant symptoms above the bottom of the scale. The fact that your GP has said your results are low implies that it is actually off the bottom of the scale.

  • I can feel it's low but it's hard to determine as I think the thyroid symptoms mirror some of the b12 ones. I definitely feel my reactions are slowed, it's taking longer to judge things such as crossing the road. I often hear my pulse in my head. I can get very stressed and irritated. I am nothing like who I was.

    Thanks for your info it's very helpful

  • Yes, there is a significant overlap in symptoms of B12deficiency and other conditions - and a high chance of having more than one problem going on so definitely need investigation of other possibilities - but that certainly shouldn't delay the treatment for low B12

  • Thanks. I will definitely push this the gp

  • Is the pulsing in your ears? Or head?

    Start keeping a logbook of your symptoms especially the neurological ones. Also log food and meds.

    Once you start on b12 injections your symptoms will change and new ones may appear.

    Your log will also help you monitor your improvement.

  • Thank you. It's in my head. My doctor thinks it's tinnitus but I feel it's more like the blood Rushing through my head.

  • 165 is low. I had numb feet, giddiness, breathlessness, confusion and exhastion at 150. And still I was told that I was only borderline,and just needed to eat lots of green leafy vegetables!

  • Just want to say thank-you to you for letting us all in on your astonishing knowledge of B12 etc, I always read your reponses. You are a God-send.

You may also like...