Hi all i am new the PAS and also this forum. I bit confused and conncerned about my health right now so apologies for the length of this! after 10 months of going back and forth to docs and various specialists ? Been having various symptoms since October last year including pain and tingling around my trunk and sometimes in my lower back and top of right leg. My main worry however is dizziness - i often feel dizzy / off balance and as if i can fall over / pass out - to my left side. Been diagnosed with pernicious anaemia and had 6 loading injections in march / April. Then waited for my first3 month top up during which time i went down hill and ended up in hospital overnight. They the said it may be hyperparathyroidism as my calcium was high but by the time they got round to checking parathormone and cal my pth was high but cal gone back down which was over a week latet! One specialist says i should ask my Gp to refer me to endocrinologist the other said a rheumatologist. My gp not being any help and will not contemplate it being the B 12!! i just want to know whats going on and why i feel some symmost days and who to potentially ask to see next? Topping up woth oral b 12 at mo but not sure if its helping. Any help advice appreciated!!
Pernicious anaemia or hyperparathyroi... - Pernicious Anaemi...
Pernicious anaemia or hyperparathyroidism im confused and worried!
1% of B12 is absorbed outside the ileum so sometimes flooding the gut with B12 results in enough getting through - but you definitely need to be taking doses over 1mg - and probably nearer 5mg if you are trying to recover losing that.
The fact that you seem to have neurological involvement means that you should really be on B12 maintenance shots every 2 months (though even that may not be enough) ... and the correct loading regime was shots every other day until there is no further improvement (with a review after 3 weeks)
Ref: BCSH guidelines- somewhere around p8 or 9
bcshguidelines.com/document...
Unfortunately there is a huge overlap in symptoms of B12 and other problems - such as thyroid - and having one doesn't rule out more than one factor going on - so good to follow up and rule out other avenues.
Unfortunately there aren't really any good tests to see what is happening with B12 that are generally done - but GPs tend not to be aware either of the impact of B12D or that they can't treat based on test results after treatment has started - something that is covered in the guidelines. Your GP is correct to explore other avenues - but wrong to rule out B12.
Rheumatologist is an unusal recommendation but as they specialise in immune system it might be a good route to go down. In theory they should have some knowledge of B12 but ...
Hi tanks for your reply - it seems to of cut off thou just as u were advising about the rheumatologist? What would be your thoughts on the endocrinologist. My work have offeref to pay for me to see someone privately but i dont know who! !! Also may it be better to supplement with patches/ spray? Thanks again!
Didn't cut off - that was where I ended it - endocrinologist would be good for thyroid but not sure they would know anything about B12 - it is a bit of a lottery as to whether anyone you see actually knows much if anything about B12 - best thing to do may be to contact the PAS (you'll need to join though) and ask if they have any thoughts.
In terms of supplements - what works for one person doesn't necessarily work for another - not just down to delivery format also true of form of b12 - there is, to my knowledge, no concrete way of predicting who is going to respond best to what so it can be a question of try and see.
Fortunately high b12 levels aren't a problem which makes experimenting a bit easier.
You've been diagnosed with PA but your idiot doctor refuses to believe your symptoms are B12 deficiency! Not only that, severe B12 deficiency...
I would either change doctors Donnag or self inject as it would seem you weren't adequately treated to begin with, causing you now to have neurological symptoms. It is essential that you receive more frequent injections as there is a short window of opportunity before neurological symptoms (tingling trunk, leg, balance, dizziness, etc - probably coming from subacute degeneration of the spinal cord) become irreversible.
I hope this extract from the BCSH guidelines will help persuade your GP to take your symptoms seriously:
"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".
b12deficiency.info/films (templates for writing to your GP).
It is often good to put guidelines, etc, in writing, as I'm told that one of their main worries is being sued.
There's also a debate going on in the House of Lords:
"To ask Her Majesty’s Government what action they are taking to address the problems associated with the late diagnosis of perniciousanaemia, in the light of the results of the survey published in the British Nursing Journal in April 2014.
"To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed." Countess of Mar - Crossbench.
theyworkforyou.com/wrans/?i...
Other links:
b12d.org/b12-deficiency-pro...
The latest BMJ research document with useful summary:
cmim.org/pdf2014/funcion.ph...
Very best wishes
Get your GP to look at the NICE guidelines for management of B12 deficiency. cks.nice.org.uk/anaemia-b12...
This is what it says about referrals.
Referral
When should I refer a person with vitamin B12 or folate deficiency anaemia?
Seek urgent advice from a haematologist if the person has neurological symptoms, or is pregnant.
Refer to a haematologist if the cause of vitamin B12 or folate deficiency is uncertain following investigations, or the suspected cause is haematological malignancy (urgently refer) or other blood disorder.
Refer to a gastroenterologist if:
Malabsorption of vitamin B12 (other than due to pernicious anaemia) or folate is suspected.
The person has pernicious anaemia and gastrointestinal symptoms, especially if there is a suspicion of gastric cancer (for example co-existing iron deficiency). The urgency of referral will depend on the nature of the symptoms.
The person is folate deficient, and antibody testing suggests coeliac disease (positive for anti-endomysial or anti-transglutaminase antibodies).
Consider referral to a dietician if vitamin B12 or folate deficiency is thought to be due to a poor diet.
Thanks for your advice and guidance- its giving me the confidence to ask to see a different gp and keep pushing for more answers and pursue this hyperparathyroidism route too! Its a great forum in at least we know we're not alone in this. ! How are you coping with your PA etc
😊
Hi, I am in a very similar position to yourself. I was diagnosed with PA about 5 years ago and despite initially feeling better then went on to develop more symptoms including dizzyness and all the usual B12 problems. I ended up in hospital for a week due to calcified tendonitis in my shoulder, at that time the drs failed to diagnose what the problems was. I have had a five year fight being passed from one specialist to another, then one Rhumatologist decided to test my Parathyroid hormoe level and it was high, long story short ended up seeing endo and he said it was due to my low vit D but I was not convinced and continued looking for answers I came across the Norman Parathyroid Centre parathyroid.com/about-parat... there website has a welth of information on it. Please do not panic if you have a problem with your thyroid as I also do it is not your thyroid it is the Parathyroid which is different. Hyperparathyroidisim is a very rare condition but like PA and all the other problems with similar symptoms they make you feel rubbish! Next week I travel to the USA to thave surgery at the Norman Parathyroid Centre so have my fingers crossed that I then get fixed. I would suggest if you have high calcium and hight PTH levels then you read the website. They also have an app on the app store which you can put in your blood test results and other details and it will give you an indication if they think you have Hyperparathyroidsm.
Hope this information helps.
Please let us know how you're doing after your operation. I just discovered the parathyroid yesterday after realizing that my calcium had been borderline high and my vitamin d low for several years. Yet no doctor ever put those two together.
Of course, I'm wondering what the link might be between B12d and hyperparathyroidism (maybe gut absorption). But regardless, I'm interested in getting my PTH tested now and what your experience is like.
Hope your operation goes well and you finally find relief.
I will do, this is the first time I have actually posted something to the forum but thought as you had raise the question abt hyperparathyroidism I would reply so you knew you were not alone. From what I understand if both your Calcium and Parathyroid levels are high then there is a good chance that you have Hyperparathyoidsm but read through the website, it is very comprehensive and they are the world leaders in treating this problem.
I hope you also get sorted and let me know how you get on.
Hiya thank you for your reply . Its kist nice to know ur not alone or going mad!! Im am defo going to pursue the hyperparathyroidism rpute also as i often have unexplained joint pain too. Do u recommend i ask to see an encrinologist next or rheumatologist? Work have said they will help me see one privately but not sure what will happen once i then have to go back to nhs docs ! Good luck getting sorted i bet / hope it will be a big relief! 😊
I saw both rumy and endo and neither thought I had a problem with my parathyroid glands they seemed to think it was just becasue of vitamin D deficiency. All my other symptoms were put down to chronic fatigue and fibromialgia along with PA. For you if you have high calcium as well as a high PTH then an Endo should be able to sort you out. However if your employers are willing to pay for you to go privatly then I would go to the US for your surgery to the Norman Parathyroid Centre as they are the world leader, the operation they perform is much more comprehensive and much less invasive than that carried out in the UK. From my research the scans that are performed in the UK are often incorrect and when they do pick up a tumor they only remove the one showing on the scan but sometimes there can be more than 1 and if one gets left then you don't get better, also repeat surgery is more difficult to perform.
If you have a good GP and can get them to perform 3 lots of blood tests 1 per week over 3 weeks (or better still get them done privatly) to measure your PTH, Calcium and Vit D and also have a bone density scan you can then put that information into the App then it will give you a good indication as to whether you have hyperparathyroidism. I am obviously not medically trained this is just information I have gained by doing lots of research and speaking with the specialist in the US you should obviously do what is right for you and follow your gut feeling, that is what I have done. I have had to fund myself and am just hopeful that my gut instinct and the specialist in the US is correct.
If I can be of any more help just let me know.
Good Luck
Hi Donna,
Thank you for your message, yes I have had my op and yes I did have Primary Hyperparathyroidism they removed 2 tumours, I am now a different person! Back to who I used to be 
so it was not CFS or Fibromyalgia. I can now start to return to a normal life thank goodness for Google! And a dogged determination to get to the bottom of what was wrong.
Did you get sorted?
Hi thats fabulous news. Im sooo pleased for you and admire your determination. Enjoy your new lease of life. Why on earth do they not test / acknowledge this in the UK? Guess its about money / nhs funding? Im ok ish waiting for my next b 12 injection which I feel i need! ! And got my gp to book another parathormone / calcium blood test for 21st sept. Altho his convinced it will be clear! So still bit in the dark 😐 well done you thou and hope it wasn't too bad an experience. 😉
Hiya long time since i posted but just wanted to let Susan 523 know that i have finally been diagnosed with hyperparathyroidism and have an op on Monday to take out the tumour. !! They have found one large one and said will check others so fingers crossed. 😐how are u getting on ? Hope still good. Are u still having b12 injections / probd?
Wow, I am so pleased for you. Where are you having your surgery? Are you having MInimal invasive surgery? Would you mind me asking who you saw? Yes I still have my b12 injections as it is a completely separate issue. Since my parathyroid surgery I am like a new woman I have my life back. My friends and family can't believe the difference and it is instant!
My only regret is that I lost my mam 8 months before I got sorted and she would have be so pleased and relieved that I was much better although she would have been horrified that I had had to travel to America for the answer.
I wish you well for your surgery, please let me know how you get on.
Sue xx
Hiya thanks for reply. Im so glad to hear your still doing great ! Sorry to hear about your mam though. I live in Merseyside so im going into the Royal Liverpool hospital. Under an endocrinologist - miss wignall. Had to really push gps etc but was getting worse and having heart palpitations etc so they finally referred me to the rights specialist who diagnosed it straight away. Had more tests since etc. Havimg parathroidectomy so not minimal etc. Will be under with general and stitches etc! Will let you know how goes but feeling more positive after your email -thank yo 😊xx
Hi Donna, once you have recovered from the surgery you will feel like a different woman! I am so pleased you managed to get your diagnosis in the uk and did not have to do what I did. Although I have no regrets, they gave me back my life it's just a shame I had to go thousands of miles. I saw a professor of endochronology at Newcastle who told me I did not have a problem with my parathyroid! My GP's were very supportive but if the specialist they send you too don't help then there is not much you can do. I had 2 adenomas removed and all I have left is a scar across my neck which is now fading nicly. I wish you well with your surgery and I will be thinking of you. I am so pleased I replied to your post good luck xx
Thanks Sue im soooo pleased you replied too. Thank you and i will let you know. Xx it is a shame and the downside of this condition that u had to go thousands of miles ! But glad yours sorted and your story has helped me loads. So i cant thank you enough!!! I think I . was lucky that i saw an endo who specialises in parathyroid probs. But it shouldnt be like that. Keep well x
Hi Donna,
Have been thinking of you, hope you are recovering from your surgery and that you have already noticed a difference, this surgery really does change your life.
Love Sue xx
Hi Sue
Not sure if u got my other posts. Im ok post parathyroid surgery? Doing bit better now after all post op probs etc...
How you doing ?
Donna
Sue did u get my updated ?
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