Morning all,
Anybody got any tips for making my immune system stronger?
I eat a fair share of fruit and vegs, but seem to catch every cold/sinus bug that goes around and struggle to get rid of them once I catch them. i've looked online but most say eat more fruit/veg etc.
Not sure if it's linked to PA but seems harder to shake of bugs nowdays.
thanks
Hi KeithUK. Sorry, I'm not very good at diet to strengthen the immune system but one thing I can say is that once I had sufficient B12 (which took a long struggle with my GP) I stopped getting the frequent infections that I'd been having for years.
I've had a look at your previous posts and the first thing that strikes me is that you say you can 'put up with the pins are needles'. Well, you shouldn't have to. Pins and needle is a neurological symptom and if this is due to under treated B12 deficiency, it's a potential sign that neurological damage is occurring. Your GP obviously does not know this.
Added to this, the fact that your symptoms return before your next injection is due is an indicator that you may need more frequent injections. I think it's possible that you have have been undertreated for your B12 deficiency and that it would it would be a good idea to try and convince your GP to put you on the neurological regime of treatment (you've already had the loading doses so you would need alternate-day injections until there is no further improvement). When neurological symptoms are present this may be required for many months.
There are other causes for pins are needles and I'm just wondering if you've had your folate, ferritin, and vitamin D levels checked recently. Deficient or low levels in these can cause symptoms similar to be 12 deficiency so it might be a good idea to ask your GP to check please.
Note: a B12 and folate work together so if your folate levels are deficient or low in the reference range your body will not be able to utilise B12 properly.
About blood tests: GPs often say blood results are normal when they're not. If levels are bumping along the bottom of the reference range, or indeed at the top, this is often not good enough, especially for people with Pernicious Anaemia Society and/or B12 deficiency. When you have blood test's, if you want to get copies of your blood results and post results here, together with the reference ranges, we will be able to advise about interpretation.
Another thought: people with PA (an autoimmune condition) often develop other autoimmune conditions and some go on to develop problems with the thyroid. There are many cross-over symptoms between this and B12 deficiency. Have you ever had your thyroid tested? Most GPs only test TSH and this is not sufficient to give a true indicator of thyroid status. So it might be a good idea to ask your GP to do a full thyroid panel. Ask for TSH, FT3, FT4, and the thyroid antibodies TPO Tg ( these are raised in the presence of Hashimoto's thyroiditis).
Whatever the cause of your continuing symptoms, especially the neurological symptoms, your GP should want to investigate to ensure that you have no underlying health conditions (for instance have you been tested for diabetes?). Also, in the presence of ongoing neurological symptoms it would be Usual to refer a patient to a neurologist to rule out any potential underlying causes. Ask for a referral to neurologist.
I also note with much dismay the surgery nurse's claim that nobody ever gets B12 injections any more often than three monthly. This just goes to show how little they appear to know about PA or B12 deficiency. I'm left wondering how many other people are suffering due to their lack of knowledge and hence treatment that might not be appropriate for their particular needs. How sad. How bad.
PA is quite a complex condition and it's not possible to cover very much in a short reply. I'm going to copy and paste some links to more information and guidelines that will help you to understand what your GP should be doing for you. They will also provide evidence that you can take long to show to your GP.
If you log on to the Pernicious Anaemia Society and to go to the library section you'll find a document called sub acute degeneration of the spinal cord. This outlines the sort of damage that can occur when under treatment of B12 occurs. I'm not suggesting that you have this but many GPs are unaware of the neurological havoc the B12 deficiency can wreak upon the body. Print this document and take it to show your GP. It might sharpen his/her thinking a little. Asked to be reassured that you are not at risk of developing this condition due to your ongoing neurological symptoms.
Anyway Keith UK, this seems to be quite a long reply and I haven't even answered your original question. So sorry for that 😖😄.
I hope you manage to find some answers and start feel better very soon. It's likely that you may have more questions when you finished reading and if you do please put up a new post, especially if you want more help in dealing with your GP. There are lots of lovely folks here who will be able to pop along and offer advice and support.
So here are the links ( but please excuse me if you're already aware of the information contained in them):
b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)
evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)
pernicious-anaemia-society.... (PAS Symptom Checklist)
stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)(British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)
stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)
stichtingb12tekort.nl/weten... (Testing B12 During Treatment)
stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)
stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)t
stichtingb12tekort.nl/weten.... (B12 and Intrinsic Factor)
👍
Thanks very much for all the info foggy, i'll use it when i see my doc next. I've tried in the past to get the injections more frequent but with no luck. Took me ages just to get it lowered from 13 weeks to 12 weeks. They seem to think they were doing me a favour even then. It's weird because they wouldn't say to someone in pain, you can't have painkillers 'till the 12 weeks is up, they would issue them straight away....anyway
thanks again
Agree KeithUK...weird indeed. Wonder what happens if you withold insulin from a diabetic...
[Some places] in Europe, B12 injections can be purchased over the counter from any pharmacy...and injected as often as needed to get and keep well.
Dogs with B12 deficency have injections once a week.
Weird indeed.
Some here (me included) eventually turn to self-injection to top up between GP jabs, when all else fails - only way to get and stay well 😖😄.
If you're eventually left in the position where this is the only option left, we can give you advice about this.
Good luck 👍
just to note - not all of Europe treats B12 as over the counter - is over the counter in Germany and France but not in Netherlands or Belgium for example.
Hi Foggyme, sorry to interrupt the chat but I am really starting to reach the end of the road with fighting my GP to get the correct treatment. How do I find out about self-injections. Many thanks
Hi MandyPandy. No time to reply right now. I'll take a look at your previous posts and get back to you later today 👍
P.s. Suggest you put up a new post with your question...will enable others to also respond so you'll get more input...and quicker answers.
Will reply to your new post instead of here...but will be much later today...if that's what you choose to do 👍
Hi MandyPandy. First, sorry I couldn't get back to you before now 😖.
I've just re-read your past posts and what a sorry tale. To re-cap:
PA in the family. B12 deficiency diagnosed at 114. IF negative - but you can still have PA. B12 still only 465 after loading doses (that's very low after injections). Continuing neurological symptoms. Neurologist states B12 'insignificant' and diagnosed ME (quite ridiculous). Referred to endocrinologist - okay for thyroid or hormonal disorders - probably no use at all for B12 deficency (unless you happen to fall lucky and find one who understands it - though it is outside their remit).
You say that you're being dismissed (as you are) because you've had 'treatment' for B12 deficency. Problems is, you haven't had the right treatment - as you recognise - following the loading doses, you should have B12 injections every other day until no further improvement - because you have neurological symptoms.
Not surprised you want to self-inject - many here do as a last resort.
However, once self-injection begins, it's often difficult to access the right support from medical professionals (sic). For instance, if you inject frequently - which you may have to - a GP should test potassium levels regularly (potassium can become quite low, and this can be very dangerous): and it's not safe to supplement with potassium unless under direct medical supervision.
It's also advisable to have folate, ferritin and vitamin D tests periodically as these can be quite low due to the absorption problems associated with PA (which Imsuspect you have - your GP has obviously never heard of antibody negative PA).
Also - if you have ongoing gastric problems, a referral to a gastrologist would be appropriate (and a neurologist for the Neuro symptoms - though that seems to have failed you badly).
Also - and just in case you decide to go down the SI route - here's a link to safety advice related to the use of B12 (largely aimed at those with pre-existing health conditions):
mayoclinic.org/drugs-supple...
It would be so much better if you could get your GP to treat you properly, for the above reasons - though I know all too well how difficult this can be (it happened to me too 😖).
So...
Have you tried contacting Martyn again and asking him to intervene with your GP on your behalf?
Or...you could try writing formally to your GP, including evidence from my first reply to you. Make sure you name a particular GP because that person then becomes accountable...your letter (and the fact that he is refusing to treat you as per the guidelines) becomes part of your medical records.
Include information about subacute combined degeneration of the spinal cord and ask him to confirm, in writing, that you are not being exposed to this complication further to under treatment for your proven B12 deficency.
Also include evidence about the fact that testing B12 levels once treatment has commenced is meaningless - and contradicted in all the guidelines.
Also ask that if he still refuses to prescribe the neurological regime, he puts his reasons in writing...and provides medical evidence to support that decision (he won't be able to - there isn't any).
Make sure you include the date that of your next appointment with him and say that you sincerely hope that he will have time to review all your evidence before that appointment, so that you can make best use of the time available (any GP who ignored such a request would do so at their own peril).
This approach has has worked for quite a few people in the past...and it might just work for you.
And...a thought...is there another GP in the practice you could see. Or perhaps change surgeries completely (thought there's no guarantee that another GP would be any better...but there's always the hope 😄).
Having said all that...it might be that SI is a route that you feel forced to go down to become and stay well - like far too many here - me included.
I haven't seen them but apparently there are some very good videos on YouTube about self injection. There are two methods - deep subcutaneous (under the skin) and IM (into the muscle). Matter of choice which you prefer - either will do the trick (I do IM). It's really quite easy to do, it's very difficult to do yourself any damage...the main thing having th confidence to jab yourself (suggest that if,you get to doing it, you practice on an orange with a syringe full of water - feel very like injecting into human tissue, and will help with the confidence thing.
I think other have given you advice about sourcing supplies but if you want any more information, put up a new post and we can leave links to reputable and safe suppliers (B12' syringes, needles, disposal units etc).
I see that you were going to the endocrinologist today...just hope that you have had a better experience than with your previous appointments (though I suspect they won't be interested in B12 - unless you're very lucky).
If it all went badly, please don't despair. Many here know exactly what that feels like - though the fact that you're not alone won't be much of a consolation when all you want is to be treated with respect - and treated with...well...treatment!
So, a hug (in case it was a bad day)...and a hug in case it wasn't 😉.
Again, sorry for responding later than planned (managed to catch a bug at my grandson's christening - yikes - first outing since Christmas) 🤔🙂.
Take care x
Hi thank you for providing all of this information - it has been very helpful. Thank you again x
I did read or hear on the radio about some research which indicated that ensuring Vit D levels are high enough during the winter months can protect against colds and flu. Don't have a link, but it is probably a good thing to keep Vit D levels up.
Vit D level needs to be around 100. Do you know yours and are you supplementing ?
thanks everyone for your replies, not sure of my vit D levels Marz, but I was thinking of trying a vit D supplement, I obviously need something to boost my immune system.
I'm really considering self injecting now, at least that way I have control of the my PA and not have to rely on someone else's diagnosis of how I am feeling.
thanks again for all the replies
Hello Keith,
I've looked into the same thing as I kept getting run down but now (touch wood) haven't been ill in a long time. I use garlic in my cooking whenever I can and ginger in my smoothies. I've upped my amount of green leafy veg like spinach and kale.
I've also learnt to make my own bone broth - much easier than I thought it would be! Literally just boil the chicken carcass that's left over from dinner with some onion, herbs and sometimes I put tuneric in.
I also have started eating more spicy foods too.
Best wishes
C
thanks claire, will try the garlic and ginger, iv'e heard they can help
I also second the vitamin D. I was very low I found out a few months ago. I'm feeling better for the daily dosage supplement.
Hi Claire, what supplement are you taking and what doseage as I to found out I'm vit d def.
Dosing based on results ..
Be aware that your result is in pmol and the website in ng. So divide your result by 2.5 and for every 10 points below 60 you will need 1000 iu's of D3. If you are VERY low then you may need loading doses. K2 MK7 along with Magnesium are important co-factors.
If this is all too confusing let me know your result and I will suggest a dose ☺
Hi Sarah,
I take 3000iud vitamin D in the form of a spray as apparently its absorbed more easily and quickly. I find it so easy to use, just one quick spray on the inside of my cheek each morning.
C x
Not sure if this is helpful to you, but thought I'd share my experience in case it is. I have had chronic sinus infections for many, many years. I used to get four between October and March, but thanks to daily sinus rinses and medication, whittled them down to 2. Last summer I learned I had PA and have been getting weekly injections for several months now. I also became gluten free in the fall, which has cured my stomach woes. All that to say, this is the very first year I've been sinus-infection free! Not sure if it's because my B12 is back up now or if the gluten was causing it, but perhaps once your levels are back up your immune system will respond, too. Best of luck to you!
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