A million thanks for all of the responses regarding my Dad and his suspected PA. I was quite overwhelmed by the response.
Since then I have been doing plenty of research and have also joined the Thyroid UK forum as he has hypothyroidism. One thing I have learned is that when undertreated for hypothyroidism you can become deficient in key vitamins including B12 and Folate. I was gearing myself up to look at administering the injections for him (to save him paying £35 twice weekly for the injections!) but now I am wondering if it is possible that the issue has been his undertreatment of his thyroid and not 'PA'.
The symptoms are all quite similar (his main one is chronic fatigue).
Are the injections going to help regardless of the cause? Whether it is technically PA (definitely still could be) or as a result of poor absorption because of undertreatment of hypothyroidism (stomach acid) - I am just trying to work out where we go from here. This has already been a huge learning curve for me and I really appreciate all of the help on here.
Any thoughts or advice would be appreciated.
Thanks,
Clare
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Needleandthread44
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"if it is possible that the issue has been his undertreatment of his thyroid and not 'PA'."
It can be very hard sometimes to know exactly why someone is B12 deficient. It's possible to have multiple causes of B12 deficiency at the same time...I suspect this might be the case with your dad.
I'm guessing his thyroid issues are auto-immune. Having an auto-immune condition increases the chances of developing further auto-immune conditions so I hope his GP is thinking which auto-immune conditions can cause B12 deficiency.
PA, Coeliac, Crohn's disease are three I can think of and there are others.
Whatever the cause of the B12 deficiency, the treatment is likely to be the same.
If I remember correctly, your dad has neurological symptoms and I think it's made clear in the BSH Cobalamin and Folate guidelines that someone with B12 deficiency with neuro symptoms should be on the BNF pattern for those with neurological impairment.
A B12 loading injection every other day for as long as symptoms continue to improve then a maintenance injection every 2 months.
Every other day loading injections should not stop while patient's symptoms are still improving.
This is where a symptoms diary may be helpful as it can show if his symptoms are still improving.
BSH document mentions the possibility of a review of loading injections after 3 weeks of them.
I've read a lot of posts where UK people with B12 deficiency with neuro symptoms get fobbed off with injections every 3 months and only 6 loading injections.
I feel strongly that many people are not given enough loading injections.
Sometimes people will get the typical 6 in UK, not see any or only a little improvement then GPs will move patients onto maintenance injections.
I suffered B12 deficiency symptoms for years without treatment. NHS refused to treat me other than one set of 5 or 6 loading injections so I had to treat myself. It took weeks even months of very regular loading injections to start to see improvements and I put this down to being so long without treatment.
Basically yes to everything Sleepybunny said (as usual). I think there are quite a few of us who continually test negative for PA despite having some sort of absorption problem. Too bad the Schilling test doesn't exist anymore.
Injections will help regardless of the type of B12D. And since you can't overdose on it, there's absolutely no harm in continuing. My biggest worry however is being incapacipated and not being about to ask for injections because it's not on my medical record, therefore I've tried quite a few times to get to the bottom of things. Therefore - and I think this was mentioned in your other post - you might want to look into getting a power of attorney (or whatever is legally needed) so that you can act on his behalf for all things medically related.
Welcome here. Sorry I am sorry to hear about your Dad and it is a huge learning curve for you. Plus helping him, reading information and trying to get the medics on board.
I always write on my posts P.A./vitamin B12 deficiency because the testing to prove it is autoimmune or not is absolutely rubbish. The root cause of his deficiency can be very hard to determine, lengthy and can be expensive.
Firstly, your Dad has symptoms including neurological ones. Keeping a diary is a great way. Easiest way - a table in word or Excel, all his symptoms down one side e.g.
24/6 25/6 27/6 28/6
Fatigue ✅ ✅ ✅. ✅
Tinnitus. ✅. ✅. - -
Balance. ✅. ✅. ✅. -
Dizziness. ✅. ✅. - -
Sore tongue. ✅. - - -
Heart rate. 130 116. 92. 89
Loss of appetite. ✅. ✅. ✅. -
Bladder problems. ✅. - - -
Pins and Needles
In hands. ✅. ✅. ✅. ✅
In Feet ✅. ✅. ✅. ✅
Updated post: Sorry the alignment has gone out of sync. At some point (she says) I intend to design a PA/B12 chart based on one you’d have in hospital.
There are apps around but you can’t beat a good old chart in medicine!!
If your father is responding to vitamin B12 injections and his signs (shortness of breath can be measured - how many breaths a person takes in a minute, heart rate too) and symptoms (non visible and subjective) are improving then I would definitely be inclined to continue injections.
I agree with Sleepybunny wholeheartedly, we are not given enough loading doses and then put on 3 monthly. I was clueless about PA/vitamin B12 deficiency until it happened to me and I’m still learning every day.
Yes, the symptoms of B12 deficiency and those of hypothyroidism are extremely similar.It can take a while for levo to start to work because it needs to build up in your system and he should really be retested after he's been on the levo for a while to make sure that the new dose is really the right dose.
If his stomach acidity is really low then he might find taking it with a bit of orange juice helps with absorption. The reason for taking it on an empty stomach is that it needs relatively low stomach acidity to be absorbed but if a patient isn't producing stomach acidity then they need to introduce some acidity in order to get to a low acidity.
Injections will help regardless of the exact B12 absorption problem. Having had an injection may mean that he now needs to keep levels very high. He can try spacing them out but should keep a diary of symptoms to decide the best spacing.
Thanks everyone. Spoke to my dad who is not at all keen for me or anyone other than the nurse to inject him. He thinks now that he has had the 8 injections that he will give it a break for a while. Not really sure what to propose from here but I know he needs to keep up with some form of b12. Had anyone had any positive experiences of other forms of b12?? Patches? Drops? Etc?
That’s difficult about Dad and you have to respect his wishes. Everyone is different with other routes. Some people have had good response to tablets.
For me patches did nothing. The science of ‘medicine administration’ are sublinguals are the better of the three compared to tablets and patches. There are certain types of cells there regarding absorption. However, we are all different and there’s no guarantee. I do hope they work.
I was thinking if he could get NHS B12 treatment maybe you could ask nurse to teach you how to inject him. Cheaper for the GP practice and maybe your dad would be happier to accept injections knowing the person had been taught by a health professional.
Search online for "low stomach acid bicarb test".
I found oral B12 ineffective in all forms, it helps me a little bit between injections but I still need to inject regularly.
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