Has anyone found it helpful to see an endocrinologist?

Hello, I am asking you lovely people for more help. Has anyone in there quest to sort out their B12 deficiency (mine was 114 at diagnoses and now 465 after six loading doses) seen an endocrinologist and found it helpful, as I am really struggling to get more frequent injections from my GP as they say I am "now in range" and wont listen to anything else, the neurologist that I saw dismissed my neurological symptoms and said that a B12 level of 114 was not that low and would not make me hands shake, my one finger is constantly triggering, pines and needles and more and has said I have ME and the hematologist has just said that they wont do the Holo test as I have had the loading doses - HELP!! Any thoughts on the endocrinologist?

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  • Hi,

    You mention 6 loading doses. Are they going to give you any maintenance doses?

    "B12 level of 114 was not that low and would not make me hands shake"

    I had limb movements and arm tremors at levels in the 300s.

    Have you considered writing a letter to GP outlining your concerns about treatment?

    Link below may be of use

    b12deficiency.info/b12-writ...

    Have you had an IFA (intrinsic Factor antibody test) which can help to diagnose PA (Pernicious Anaemia)?

    stichtingb12tekort.nl/weten...

    "and has said I have ME"

    B12 deficiency is sometimes misdiagnosed as ME/CFS.

    b12deficiency.info/misdiagn...

    martynhooper.com/2015/08/04...

    "hematologist has just said that they wont do the Holo test as I have had the loading doses"

    It is possible to have holotranscobalamin test done privately in UK but as you have had loading doses it's possible that results of test would be affected by B12 in loading doses.

    active-b12.com/frequently-a...

    I saw an endocrinologist and asked about the possibility of b12 deficiency. I had many typical symptoms but B12 levels normal range at that point. It was useful in the sense I got some more blood tests but as these were normal range results, they were still not willing to consider B12 deficiency.

  • I have an appointment the day after tomorrow with the Endocrinologist - as I've already received treatment for PA, I'm not sure either what use it'll be. But I'm going along anyway just in case. He requested some unusual blood tests too!

  • Hi Kirsten555, I hope the appointment goes well for you, perhaps you would be willing to let me know how its goes as this may help me decide to go and see one. All the best.

  • Hi MandyPandy - yes, I'll let you know. I have absolutely no idea what to expect! I'm seeing him Thursday morning, so will be in touch after that. Thanks! x

  • Hi Kirsten555, I hope you dont mind me asking but how did your appointment go with the Endocrinologist. Did you find it helpful with regards to your B12/PA deficiency. It would be really interesting to know as I dont know whether to pay and see one myself. x

  • So sorry - I meant to reply to you after my appointment, but what with Easter, loads of family visiting and then a dip in my health, I forgot! I'll go and find the paperwork for the tests requested, and then get back to you. xx

  • Hi don't worry, sorry to hear that you have been poorly. I hope you had a nice Easter. x

  • Hi MandyPandy - I'm really sorry for the delay in replying to you. My GP referred me to the Endocrinologist at my local hospital in the early stages of me trying to convince him I was suffering from PA, or at least B12 deficiency. In the time it took for the endocrinologist's appointment to come through, my GP agreed to do the loading doses of B12 (he said it may work, even if was just a placebo effect) and I then began self-injecting after being told the next jab would be in three months' time!

    The endocrinologist requested a blood test to be done a week before my appointment, and these were the tests required:

    Alkaline phosphatase, Calcium adjusted, Cortisol, Erythrocyte sedimentation rate (ESR), Full blood count, Phosphate, Parathyroid hormone, Vitamin D.

    It was also stipulated that the test should be done at 9am.

    The appointment at the hospital went well in so far as the endocrinologist said everything looked fine. There was a fourth year medical student present too, which took the attention off me somewhat as she was very busy watching him examine me, and explaining things to him. She said my thyroid was fine at these levels (I've been hypo-thyroidic for 25 years and on thyroxine), and all my other glands were fine. The student examined me by feeling and pressing various bits (my head, neck, stomach etc) and the endocrinologist did a cursory examination afterwards.

    The problem came when I told her I'd had a diagnosis of PA since my referral, and was receiving B12 shots. She questioned the diagnosis (which then made me wonder if my GP had actually diagnosed it, or was simply humouring me with the B12 shots) and talked about the placebo effect too. This annoyed me! I explained how I was feeling so much better already, and also told her I was self-injecting as once every twelve weeks wasn't enough. She then really told me off about this, mentioning dangers, toxicity, and how people shouldn't believe everything they read on the Internet etc.

    So all in all, it wasn't a helpful or productive appointment at all. I still don't understand what exactly she was looking for (she never explained about the tests, which she said had all come back fine) and once the self-injections were mentioned, she really seemed to dismiss me. I was only trying to be open and honest, and also perhaps educate her a bit! But it didn't go down well, and I left thinking that the whole appointment had been a waste of time. However, I guess the good news was that she didn't spot anything wrong from the blood test.

    I hope your appointment, if you go ahead with one, is more helpful!

  • Hi Kirsten555, thank you for your reply it is really kind of you. I am sorry that you feel that you were not listened too. That is my worry and I am not sure if paying £180 to see one privately would be worth it in terms of getting listened too about B12. I too am looking down the self injecting route - feel a bit nervous so have decided to pay at a private clinic for one or two to see if it makes any difference as I am currently off work and have been for 6 weeks. To be honest I feel worse than before I had the injections, at least I was semi-coping, now my body just seems to have crashed, although I am noticing small improvements - think I will see how it goes with the few injections before I shell out. Thank you again for sharing your experience. All the best x

  • So sorry to hear you're feeling worse, although I had that too and remember feeling so disappointed. It took about four weeks to start feeling any improvement at all, after the loading dose. After a further four weeks of self-injecting weekly, I'm now well on the mend (I did a 6 mile walk yesterday!!) although I still get tired by the evenings, and am sleeping on average nine hours a night.

    Maybe wait a bit and see if you feel more improvements before forking out for a private appointment with an endocrinologist? To be honest, I was shocked at her ignorance of the whole B12/PA thing - she simply spouted forth the classic stuff, showing no knowledge at all of the issues.

    Don't be nervous about self-injecting. I was very nervous, but using a very thin and small 'yellow' needle, and injecting subcutaneously into the flesh of my stomach really is easy and painless. In fact, I'm just off to do one now! Good luck - really hope you start to feel the improvements soon. xxx

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