Crossover symptoms and Advice

Hi Everyone,

I know this forum provides valuable advice and support for people with B12 defficiency and Pernicious Anemia but we must all be careful about the advice we give.

I turned to the site when I was diagnosed with PA with a level of vitamin B12 at 80! I had nearly every symptom on the list and was started on a loading dose followed by 3 monthly injections. I seemed to improve for a while but then I began to deteriorate, I had terrible pains in my feet, I would cry just trying to stand up, I ached and could sleep 18+hrs a day along with many other symptoms. If I had listened to some of the advice I was given I too would have been trying to self inject and take sublingual B12 (I am not saying that this is not right for some people). I continued to see my GP and had referrals left right and centre: neurologists, rheumatologists, endocrinologists & Immunologists. I had many diagnoses including CFS, fibromialgial & ME to name but a few and I was even told that I should be grateful that I did not have cancer; I would just have to learn to live with my condition, but I knew they were wrong! After a referral to a third rheumatologists he tested my Parathyroid function (Please note this is completely different to thyroid), my levels were 6 times what they should have been!!! He suggested being re tested in 3 months, but after some research on the internet I went to see my GP where I was re tested immediately, my levels were sky high. I was then referred to an endocrinologists who said that it could not possibly be my parathyroid, but again I was certain, everything fit. I contacted the Norman Parathyroid Center in Tampa USA and downloaded their app. They were 99% sure that I had a parathyroid adenoma and that a 20 min operation could not only change my life but save it. My husband said that we had to try it so we booked and paid for my surgery; 6 weeks later we travelled to the USA. The rest is history, 2 tumours removed and my life has changed completely. Once I had recovered from the surgery the difference was unbelievable, the fatigue completley gone, all the aches and pains disappeared etc etc. I am lucky that at the moment I get my B12 injections every 6 weeks, as if I don't it's a bit like talking to a crossword puzzle 😀 But the fatigue and the aches and pains have all gone.

My point is, there are many conditions with similar/the same symptoms and we need to be aware when we give advice that we could be stopping someone from getting a full diagnosis. My condition was slightly different to some, as in I had normal/low calcium rather than high, so my diagnosis was "normo calcemic primary hyperparathyroidism". I am not sure that in the UK this is tested for as routine or that we have the necessary experts to treat it but if you have a good GP then it is worth asking for the test.

A few people may remember the family that won the huge Euromillions jackpot a few weeks ago, no that wasn't me, and that the lady had just returned from surgery in the USA, she also had hyperparathyroidism! If your symptoms of B12 are not manageable then it is worth considering.

parathyroid.com/dr.norman.htm

There is lots of valuable information on their website and on YouTube.

If I had believed what some of the Dr's had told me then I may not be here, and I would not have the quality of life that I have now. I knew in my heart of hearts that something was not right and if you believe that then you have to fight.

If I can help anybody or answer any questions please feel free to ask.

20 Replies

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  • Thank you for sharing and I am glad you found out what was causing your symptoms and that something could be done about it. And I agree with you, if symptoms deteriorate while on B12 have things checked out.

  • Thank you susan523. That is valuable information .

  • Hi Wedgewood,

    You don't need to go to the Norman Parathyroid Centre but you do need to get some blood test for them to be able to make a diagnosis. As I said unless you have kidney failure then it is unlikely that you have secondary hyperparathyrodism. My calcium levels were on the low side but I still had a tumour, my PTH levels were very high. It would be no understatement to say that the 20min surgery changed my life. With ink 24hrs the fatigue had gone and othe other symptoms all disappeared within days.

    Good luck and if I can be of any help, let me know.

  • Thanks you so much Susan 523. Thanks for taking all the trouble to post us . Very best wishes to you !

  • Hi Hippocampal. Oh dear...GP's seem to be a bit of a problem don't they (understatement).

    Is there another GP at the surgery who could order a bone profile for you? Or maybe a practice nurse who would be willing?

    Have you specifically asked the GP to do it? If so, perhaps s(he) would like to explain why they are unwilling and show you medical evidence or guidelines to support their position (oh, for an ideal world).

    You called also try writing to your GP, outlining the reasons why you would like this test performing and providing medical evidence why you think this should be done. And ask them to put your request in your medical records.

    Some health authorities have units where you can go and get a bone density scan but not sure if they also do bloods for bone profile. They're self-referring so you could by-pass your GP but I think there is a small charge for the service (depends on what local charging system is). Might be worth checking out.

    Re: the peripheral neuropathy...have you seen a neurologist? Might be asking for a referral, if not.

    Isn't it awful, the way we all have to badger and fight with our GP's to get what should be very basic treatment!

    Hope you manage to get the tests you need and that you begin to feel better soon xx

  • Hi, I am no expert but from what I understand secondary hyperparathyrodism is very rare and is usually only a cause if you have kidney failure. I too had Vitamin D deficiency and the professor of endochronolog that I saw said my high Parathyroid results were due to that, he was wrong. If you can I would suggest you download the app, take some information from the Norman Parathyroid website to your doctors and ask for the tests. If it is that causing the problem having this removed can change your life.

  • Hi Susan523. Thank you so much for sharing your cautionary tale with us.

    Since reading your post, I've done a little reading about hyperparathyroidism...it's extremely interesting and I shall certainly be doing more!

    I've also been reading about hypoparathyroidism and note, with interest, that both can sometimes occur with other autoimmune diseases, notably pernicious anaemia and Addison's disease!

    Its been really illuminating reading about these two conditions and I think I'm going to do a separate post to summarise them, especially because of the autoimmune / PA connection (I'll mention you in dispatches).

    There have been several posts recently about instances where B12 appears to not be working or has stopped working....so (and because of the cross-over symptoms) there might be some people out there who would be interested.

    In my own case, I have just been referred to a rheumatologist (positive ANA and returning deficiency symptoms unrelieved by B12 - so far), so I'll certainly be asking to have my parathyroid function tested.

    I really admire your determination and perseverance...my goodness, you must have been through the the mill!

    Good luck with the continuing B12 treatment for PA. Delighted that you managed to get yourself 'fixed' and returned to healthy being 😀.

    Again, thank you for sharing xx

  • Hi Foggyme,

    From experience I would suggest getting your information from the Norman Parathyroid website, they are the world leaders. As I say I went to see a professor of endochronolog at a regional specialist hospital and I think I knew more than he did. I am not so sure if I thought my PA was not responding to treatment or my symptoms were just getting worse but I knew I should not be the way I was. I disagreed with my diagnosis of Fibromialgia and ME oh and the one that said there was nothing wrong with me!

    I to have PA with positive ANA, vitamin D defficiency, recurrent Iron Defficiency Annemia, IGA defficiency, under active thyroid,Osteopenia (probably from having Hyperparathyrodism for so long) I am also disabled again from a miss diagnosis!

    My reason for telling my story, well, I believe there could be lots of others out there like me who's lives could be changed for the better perhaps just for a few blood tests. But I tell this with caution as from all the reading I have done I am not sure that the treatment of this condition is all that it could be.

    I also think this could be a possibility for many out there who have undiagnosed conditions that some are bein putt down to B12 defficiency, but like other conditions the main symptom of Hyperparathyrodism is Fatigue as I said I could easily sleep 18+ hrs a day! hence my suggestion that we need to be careful when we give advice. I don't want to cause panic but it is worth considering as the symptoms are so similar to B12 defficiency/PA and you don't have to have one to have the other. Also there is no connection to thyroid.

    If I can help anybody I will, but even though all my tests pointed to an adenoma (tumour) they would not help me. There is a lot more to my story and not all of the Dr's have been poor, there are a couple of Dr's that I owe a debt of thanks too as if they had not believed in me I would not have eventually worked out what was wrong with me.

  • Thank you so much! I do try to be aware that B12d is not the only potential problem and knowing about other things helps me be mindful of this. Well done on getting your treatment and good luck for the future!

  • Thank you for sharing your story. Do you know of anywhere in the Uk that can do the parathyroid tests privately?

  • Hi Sleepybunny,

    I am really sorry but I am not aware of anywhere. How good is your GP, could you not ask if they would include it in your next tests? I would suggest checking out the Norman Parathyroid website and if you think it is a possibility ask your GP. My fight for a diagnosis was a long complicated one, like most on this forum probably over 6 years and when the endochronologist said it could not be that I just fought on, I did not even tell my GP who is really supportive I just went and had the surgery, I must be saving the NHS £1000's now I am not in the surgery every week to see the dr! Or attending lots of clinics for ME etc.

    If I can be of any help I will.

  • Hi Sleepybunny. Blue Horizon Medicals do a test for parathyroid hormone (PHT) and a calcium 'bundle'. You'd probably need phosphorous done too...but don't know if they do that....perhaps you could give them a call to see?

    Or just get the PHT done and then approach your GP if the test shows an abnormal result.

    There are several,other companies that do private testing but can't for the life of me remember what they're called....will let you know if / when memory springs back to action!

    Be very interested to hear how it goes, if you decide to get them done.

    Good luck 😀

    P.s. Keep an eye out for both hyperparathyroidism and hypoparathyroidism 😀

  • For a diagnosis you only require PTH, calcium and adjusted calcium and vitamin D. Idealy at least on 3 separate occasions but the more the better.

  • Thanks Susan 523. All done at Blue Horizon Medicals Sleepybunny....so you're in luck...but they are quite expensive 😬😬😀

  • Thanks for the info...have run out of money at moment but will hopefully get tests in future. Haven't had PTH tested before but have had Calcium tested in past. Have a lot of bone pain in legs which improved a bit after starting B12.

  • Sleepybunny....your GP should be able to do parathyroid for you...

    Good luck 😀

  • Hi Deniseinmilden, please don't think I am criticising, I am just adding my experience into the mix! These forums are invaluable especially when people are struggling or have nobody else to turn to.

  • Thanks for your post - very interesting - sorry you've had such a hard time and really good that you have solved your own medical issues, albeit by having to go to the USA.

    I believe virtually everyone who posts here is careful about the advice they give, which is usually a sharing of their own, non medical experience, and clearly described as such.

    You are absolutely correct that anyone who posts or asks questions here may well have another disease as well as or instead of B12 Deficiency. I am sure I am one of them.

    As you found yourself, what needs to be borne in mind is the virtual impossibility of getting a correct diagnosis from the medical profession with the kinds of symptoms we are talking about, whether that be a diagnosis of Pernicious Anemia and/or another underlying condition. In fact, one of my GPs actually told me, when I explained that I was looking for a correct diagnosis, that she considered I was "asking too much".

    A previous GP informed me I had had "all the blood tests" and I "did not have cancer". Firstly, I had no idea she thought I might have cancer - I certainly didn't think so - and more importantly, I had NOT had "all the blood tests". I had had the first line blood tests offered by the NHS. But there are further levels and types of blood tests to go on to after that, which I had not had. She was very angry when I pointed this out.

    Additionally, as we are aware from B12 testing and as you can see from your Parathyroid tests, the blood tests do not always work to diagnose a condition particularly where the range of what is "normal" can be very wide. There are also other auto immune conditions in which the result can be seronegative but the person still has the disease.

    So advising people on this forum to check out other conditions with their doctor is a good idea. But it does not mean their doctor will be either willing or able to make a correct diagnosis or referral, or provide the treatment that person needs.

    And that is why we are all here online asking for help and support instead of at the GP surgery.

  • Well said Frodo 😀

  • Thanks for sharing as it is important to keep an open mind about symptoms. Someone else recently posted about having a cardiac problem as a cause for their breathlessness that they had put down to B12. Their GP thankfully had not. I know I'm pretty obsessed by B12 and tend to think of it first so these cautionary tales are good. So glad you got sorted.

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