Awaiting PA test

Allergies, blood and immune system
1

Hi all, I have been in and out my Dr's for 12 months. I have had shingles 11 times in the last 12 months! I was taken in to A&E 12 months ago with heart palpitations and breathlessness (suspect heart attack turned out to be tachycardia) I am now 32.

Since around Christmas time. I have been groggy, extremely tired, headaches, irritable and feeling low, frequent heart palpitations. The feeling of numbness in feet and hands.

Last month I noticed a large lump just above my collar bone, I went to my GP and he said not to worry about it. He said it is most likely related to the recurring shingles. I had just got over another lot of shingles, 2nd time since May.

Shingles returned with a vengeance last week and I had a funny turn whilst at work, my hands went numb and my heart was racing, my vision went blurry and I nearly collapsed. I was taken into hospital by ambulance. I had a blood test and my Dr Called me yesterday to discuss results.

He said I had a B12 deficiency as my level was 179 and that I would need to start the injections ASAP. So I am booked in every other day for two weeks, then every 3 months. He then said I need to come back in for another blood test, as he wants to check for P.A . This is being done tomorrow.

I have also discovered that my nan has PA and has injections every 3 months.

My questions are, does anyone else experience recurring shingles with either PA or B12 defeciency? It is really getting me down, I now fear I have a urine infection to top it all off sad

Also, does anyone actually get to the root of why they have PA? or do we just acquire it with time? Could you have always had it?

I suppose all i can do now is await to hear if I have PA. I still have the lump above my collar bone, but my Dr is adamant it is a swollen lymph node due to shingles.

Thanks for taking time to read this x

2

Hi Louise. Poor you and much sympathy. It's horrid when all this happens and you just feel so out of control. I was diagnosed 6 wks ago and had my loading injections but still waiting to feel any improvement. My legs are like lead weights and toes numb. Arms and hands tingle and headaches and last night ended up in A&E with vision disturbances and brisk loss of conciouness - put down to migraine or maybe a TIA which has petrified me!! Waiting on CT scan next. Wishing you luck and hope injections work for you X

3

Hello Mable, thank you for your reply, it really is a feeling of being out of control isn't it? I have terrible braig fog at the moment, I'm making silly mistakes at work and forgetting the most simple routine tasks! I'm so frustrated. I am having an awful time with getting up in the mornings. The best way to describe how I feel is that it's like I have a constant hangover sad

My loading injections do not start till Monday as nothing available until then, so I am just dragging myself through this week, and hoping the injections will kick start me back into a feeling of normality next week.

So do you feel that the injections have made no difference as of yet? I do hope your CT scan will shed some light for you, and you can get some answers x

4

Feel better in myself however my muscles are worse!! Apparantly you can get worse before getting better as the nerves are repairing themselves - just wish they would hurry up!!

I too dread getting up in the mornings as not sure what lies ahead - horrid isn't it!!!

5

I am not a medically trained person but one who has had P.A. for over 45 years and I suggest you don't worry too much about whether you have it of not for now as treatment for B12 deficiency is virtually the same and you are starting that soon.

Please check with your doctor what you folate level is as this is essential to process the B12 once you start the injections.

I cannot help with your question about shingles but there may be others on here who can.

I wish you well

6

Louise , because PA obviously runs in your family , it is possible that you have an inborn error of metabolism . The nitrous oxide gas which has been used on patients for generations , switches off vitamin b12 synthesis , which can be permanently causing pernicious anemia . If both parents have had their b12 synthesis switched off with nitrous oxide gas , their baby may be born with an inborn error of metabolism and will have problems absorbing and utilising b12 . Unfortunately for medical professionals working in the NHS , an active form of vitamin b12 called methylcobalamin was reserved for the private sector and they will only be able to use hydroxycobalamin , which is an inactive form of b12 and the patient needs to be able to convert it . There is also the fact that the normal b12 serum level has been set unusually low in the UK compared to other more medically advanced countries , who have set the normal b12 serum level much higher , so a patient has to be fairly poorly before their GP can treat with b12 and even then , will only be able to use the inactive form . You will be able to tell if you are not converting the hydroxycobalamin because when your GP gives you injections , your b12 serum level will shoot up into the thousands . If this happens , you should go and buy methylcobalamin yourself . If you don`t fancy paying £100 per injection privately ( it should only really cost 70p by the way ) and you can`t face self injecting , the next best thing is to buy methylcobalamin spray ( b12 has a large molecular structure and is not easily absorbed in the gut so using a spray helps to break up the molecules ) . You can buy B12 Boost by Better You from Holland and Barrett which contains methylcobalamin and if you put methylcobalamin spray in your search engine , you will find some others . This needs to bypass the gut ( people with PA have low intrinsic factor in the stomach which is needed to absorb b12 ) so instead of spraying on top of your tongue , you need to spray underneath your tongue to have it pass through your glandular system instead , at least four times a day . This works a treat on most people who have tried it . There are other things you can do which includes consuming beetroot ( juice is fine ) which contains cobalt and try eating fermented foods such as Korean Kim Chi ( fermented foods produce enzymes and is rich in active b12 ) , seaweed , dulce and some Japanese teas such as battabattacha contain active vitamin b12 . The reason you are developing infection is because you have not got enough b12 to bind to a body damaging protein called homocysteine to help your body get rid of it . A substance called trimethylglycine which is found in beetroot and in blackstrap molasses binds to homocysteine to help your body expel it . If you do these few things I have suggested , I am certain that you will feel much better in a matter of weeks . You will need to do this all your life .  

7

Thank you Clivealive, would the folate results have been in my complete blood count results? I also had a liver funtion test. He said my only abnormality was Heamoglobin and B12, thanks for your reply

8

Thank you Lesley for your informative reply, I will certainly look into all you mentioned, that's interesting about the different B12 active/inactive types.

9

yes really horrible!

10

There are several reasons for PA, some are inherited and genetic, others are dietary ( if you are vegetarian or vegan), some find it comes with age, others after stomach surgery, or from severe gastric issues I.e. Coeliac disease. I certainly had regular infections, chest, sinus, throat, uti's before my diagnosis. So I think the immune system is seriously compromised. This may be why your lymph node is still swollen?

I was diagnosed when my level was 176, and can honestly say I was sure I was dying. I felt so very ill. Hope you will soon begin to feel better, but it does take time. Best wishes Marion

11

Thank you Marion, yes I am hoping the swollen lymph node is due to trying to fight infection. I really am trying to think positively and that after my loading shots I may begin to feel better. The sluggish feeling and constant fuzziness is the worst part for me. If I test positive for PA will the injections be indefinate for life? or can these be reduced/stopped in time if my b12 level stabilises?

12

I'm no expert but I think it folate needs to be tested separately together with the serum B12. 

13

Hi Louise, as your grandmother has PA I would imagine you will need injections for life. PA usually means you lack the intrinsic factor in your digestive system, which means you can't absorb B12 from what you eat, or from tablets. Some of us use sprays and sublingual lozenges, these are absorbed straight into the blood stream from under the tongue. This bypasses the digestive system. Hopefully you will get the frequency of injections you need to feel well. I was using a sublingual spray to top-up my levels between injections, but now my GP has agreed to increase the frequency of my jabs to six weekly. This has helped me a lot. Especially with the tiredness and fuzzy brain. You will need to be patient, it takes time to rebuild the levels. Sometimes symptoms initially get worse, so don't worry if that seems to be happening. I think the body just goes into overdrive once it gets the B12 it's been crying out for. All those dying nerve endings suddenly come back to life. Good luck. Marion

14

Thank you Marion, can I get the lozenges from a normal pharmacy/supermarket?

15

I think you buy the lozenges online, I used a spray bought from Holland & Barrett. To be fair I've never asked in the pharmacy or supermarket if they stock them, but I believe they only sell the tablets and capsules. This was from looking over two years ago when I was diagnosed.

16

You can buy from Amazon and they do subscriptions so you never run out - works out slightly cheaper too

17

thanks Marion smile

18

Great thanks Mable

19

Hi

Have you had a blood test to confirm shingles? Sorry to suggest it but could you have herpes? If you havent done so get a blood test to determine the exact virus you have.

I do and also suffer heart palps.

Deb

20

Hi Deb, yes confirmed as Shingles last year sad I too was worried it was Herpes after around the 4th Time I had it sad