I have Hashis, Addisons and a slew of other things.... my old consultant (private not NHS) often called me a modern medical mystery! I have Addisons (PAI) but about 2 years after my diagnosis I had to have steroid injections in my spine- caused my BP to rise to dangerous levels and it's never come down (used to be 90/60 without fail, which is about right for someone with PAI) He also diagnosed me with a functional B12d even though he is an Endo, he was the only one that listened to me.
Anyway, PA runs in my family, I've always had issues with anaemia and a few years ago around 2016, my symptoms got really bad, my grandad suggested testing my B12, it was barely in range, like I mean it was 189 and the minimum is 180, BUT my GP was an ass and refused to do anything despite giving her papers etc from the wonderful team at the PAS in Bridgend (I live in South Wales) in the end and after complaining to the practice manager they agreed to refer it to a haematologist- who also came back and said despite my symptoms my 'numbers' were 'normal' so they wouldn't even agree to a trial. After again speaking to the PAS team, they suggested SI, so thats what I did, and boy did it make a difference! Then COVID hit and I couldn't get my ampoules, then brexit and then... well life.... I finally got them back on track and a year ago during a blood test for my endo they tested my B12- don't know why as they knew I was SI, my levels came back over 2000. I had some things happen and just couldn't afford them so 8 months ago I stopped, slowly but surely my symptoms have come back.
I've just had bloods done as I have an endo appt tomorrow afternoon. And I don't know what to make of my B12 levels, even though I take a good clean B12 supplement, plus a B complex supplement too my levels have dropped from 2000 to 549 in that 8 month time frame. According to the lab, the 549 is adequate for 2 years.... but considering its already dropped 1500 in a third of that time.... 🤷♀️
Why would my levels drop like that? The GP couldn't tell me why they'd dropped so much and so fast. Not that I expected them to, but this GP surgery is a lot better than my old one and are willing to listen and research if needed.
My son is currently living in Germany and he's ordered me some B12 and is going to send it to me, I use the Pascoe 1500Mg/ 1ml amps. I'll be restarting them as soon as I get them.
Thank you
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Horsecrazylady79
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Most P.A. patients cannot benefit from tablets . Injections are the best and not expensive. You can get your B12 ampoules from German online Pharmcies . The online pharmacies im Germany offer discounts , whjch you don’t get at the High Street pharmacies there .
Your son can get the cheapest possible b 12 ampoules by using a search —medizinfuchs.de they show you which online pharmacy offer the cheapest B12 ampoules (and other items of course ) and offer free delivery to a German address .kver a certain amount ( these pharmacies do not ship to U.K. )
If you want to eventually get your ampules from Germany youself , you can get the information here . There are about 4 German online pharmacies that will deliver to U.K
Once someone is diagnosed as having PA (or if it is highly suspected you have it), they need lifetime supplements. Some people do ok with 1000mcg sublingual B12. Lots of other people require injections. The B12 should not be tested once you start supplementing. As you see, it can be high and cause uneducated doctors undue panic. The assumption that a certain level of B2 is adequate for someone for a certain period of time does not apply to someone who has PA. The problem is that the mechanism for recirculating B12 is broken.
If you have a diagnosis of pernicious anaemia, there would be no real reason to retest serum total B12 after injections had started. It would (or should) be expected to be high.
If you have a diagnosis of functional B12 deficiency, the B12 retest alongside an MMA (methylmalonic acid) test might usefully have been done to gauge whether the MMA is linking with the B12 in bloodstream in order to make that diagnosis. That would be the only sensible reason I can think of for a B12 retest.
If both B12 and MMA were found to be high, it would suggest that this link is not being formed sufficiently to transport the B12 to where it is required: cells and tissues. Functional B12 deficiency is a flaw in transportation: your introduced B12 could be high, but unavailable to cells and tissues. B12 deficiency symptoms would continue.
If MMA is found to be high in spite of B12 injections, the following need to be eliminated as cause: renal problems by blood test, small intestine bacterial overgrowth (SIBO) by fasting breath test series over 3-4hrs.
Raised MMA can be slow to rectify; even with frequent B12 injections (twice a week) it took three years for mine to drop into range finally.
Adult Inherited Metabolic Diseases consultants can search DNA for any hereditary causes for a malfunction. No reason was found in my DNA.
Although autoimmune conditions are rife within my immediate family (eg Grave's disease, psoriasis, vitiligo etc), so one might suspect PA as the cause of my initially low B12, I have now had three negative IFab (Intrinsic Factor antibody) tests. This of course does not rule out PA, but my GP's diagnosis of functional B12 deficiency was confirmed by the testing lab and I continue to treat my deficiency as such, even without DNA evidence, because it generally works for me: with two B12 injections a week. Less doesn't.
No other causes for any of my symptoms were found, although IBS was suggested by 3 gastroenterologists as the reason I have daily diarrhoea. This is just one of my symptoms, and it has no obvious link with any others - unless B12 deficiency is the link. My GP has sent me to several consultants over the years and nothing else has been discovered to explain any or all symptoms. Having had all else eliminated, I continue with self injections of B12.
In 2016, my B12 was 196 ng/L - with a normal range starting from 197 ng/L. Luckily, this meant I was started on a loading dose (6 injections) immediately, then an injection every 3 months - at which point I was deteriorating so much that my GP retested my serum B12 and MMA . This was why she checked for functional B12 diagnosis originally.
At one point in 2016, my B12 dropped from >2000 to 860 in 2 months, still above the top end of the normal range (771) - after my diagnosis of functional B12 deficiency, I was given injections twice a week, and my serum B12 has probably never been under 2000 ng/L since.
You now have proof that supplements do not work for you. You have a diagnosis of PA, Hashimoto's, a family history of PA, and a second diagnosis of functional B12 deficiency. If your GP could not explain the drop in your B12 while supplementing, now would be a good time to ask for B12 injections. Even if you are still intending to start self injecting.
For the records. Please, if you have not done so, get your folate, ferritin and vitamin D tested too.
All of the tests above (and many more) were available to me via the NHS.
“According to the lab, the 549 is adequate for 2 years”
This is the real situation, according to a Committee at your Integrated Care Board where they decided whilst sat around a table working out a Budget for how much they were going to spend on PA/B12D, they decided a range and cut-off value.
They also asked a Software Engineer to write a computer program to include a message which is sent to the interface of the screen saying, whatever nonsense they asked. Such as, I am a robot but anything over 500 ng/L means the person is absolutely awesome, can run 7 marathons whilst juggling and balancing a burger on their nose.
Get self injecting, see how you feel, monitor symptoms and So Long and Thanks for All the Fish.
Thanks Narwhhal, I don't have a PA diagnosis no IF so the useless GP would do it. But the consultant I did see diagnosed a functional B12d. I'm looking into now having bloods and DNA tests to have it confirmed. Thank you for the info
You’ve got confirmation from Dr Spock the Endocrinologist. They said it on a specific time and date. Find out if he’s put it in your notes. Then written to your GP Practice.
So, you just get a copy of his letter via a Subject Access Request. See Information Commissioner’s Office website.
On how to get that letter. If the Endocrinologist has written it, it is the equivalent of your Birth Certificate. Then you don’t have to have more bloods and DNA testing. Save your money and the NHS.
Despite COVID, Brexit, we made sure we could purchase our German supplies. It is our priority.
Your Integrated Care Board have an Information Governance Team, a Data Protection Officer and a Medical Records team.
Just checking that you do carry a card and wear an ID Band because of your Addison’s Disease. Addison’s crisis can be fatal.
I do have a medicalert bracelet and a steroid card, always on me. I have a copy of my MR's I don't remember seeing it but I will have a look to see if it is mentioned.
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