Beyond frustrated

[Nikkimae]

I was diagnosed with PA a few months ago with my levels being below 50pg. (Range - 200 - 900) I was suffering with a lot of nuero symptoms along with the classic PA symptoms.

I was given the initial loading dose, but unfortunately this did not help matters at all, I was suffering with a lot of pain in my hands, back and feet and a lot of tingling and numbness. They GP dismissed this as not relevant to my PA and assured me that I will gradually get better.

I was tested for Chrons, coeliac disease and the test for antibodies all came back negative but I was told it was definitely PA as my levels were so drastically low.

My GP didn't seem to think he should keep treating me with injections until my nuero symptoms showed no improvement. I quoted BSCH and NICE guidelines and even brought them in to no avail.

He finally gave me another loading dose when I was rushed to hospital with an abnormal ECG reading, when I attended the doctors the next day he agreed maybe I should be given more injections. After the further loading dose my memory problems, tiredness to a degree and confusion seemed to of gotten a lot better, yet my breathlessness to a degree, balance, tingling and numbness remained.

I attempted to try and get the GP to listen again to be told it's probably the stress and anxiety of realising I have a long term illness. No matter what I said I could not get anyone to listen. My GP then took a blood test telling me he would check my antibodies again to be sure, he also checked my B12 which I was unaware of. My B12 of course came back as in the 2000 and again my antibodies as negative.

He then used this to tell me I do not need another injection until three months time despite the fact he had put in my notes previously due to nuero I should have them two monthly.

To add to all of this my digestive problems that came with my PA symptoms have seemingly gotten worse. Everything I eat I get a sharp pain and only pass loose stools (sorry). They have agreed to send me for a colonoscopy.

My doctor even had the nerve to tell me that my nerve damage is probably permanent yet wont refer me. I am now two months down the line from my last injection and really suffering, I also go away on holiday in three weeks.

I have previously spoken to the PA society who have always been helpful.

I guess I now know that it's time to self inject but I'm worried about having to start this. I was sent some B12 from B12.org in case it came to this.

Is there anything else I can do? Should I of been referred to a Neurologist? Any answers would be gratefully appreciated.

Sorry for the long rant!!

[Gambit62 Administrator]

I'm really sorry that your GP is so stupid and awful and not surprised that you are feeling frustrated.

Injections aren't the only way of delivering B12 so you could see if other options work before resorting to injections if you are uncomfortable with injections. I find that nasal works really well for me - use a range of sprays and drops. It is also a bit more convenient than carrying around phials and syringes as I also have problems with an autoimmune response that means I have to keep my levels really high.

The US equivalent of NICE - CDC - recommends nasal spray as an alternative to injections if people have problems with injections.

For me it is also a good way of mixing up the forms of B12 as I find different symptoms respond best to hydroxo, methyl and now adenosyl.

There are also sublingual sprays and tablets, and skin patches - though people do find that they respond differently to different formats, just as they respond differently to different forms of B12.

Do you know what your folate levels are like - as it is important to keep these at least mid-range to make sure you have enough to process B12 - though it does sound as if your problem is the length of time between shots .... and there isn't really any scientific evidence to support 3 months ... and I think it is negligent of your doctor not to be following the regime for neurological symptoms as you obviously have those.

In some cases it is even possible to flood the gut with very high doses of B12 (>1000mcg and probably nearer 5000mcg+) and for enough to be absorbed that way as 1% of B12 is absorbed outside the gut - but that doesn't work for everyone.

[Nikkimae in reply to Gambit62]

Thanks for the reply Gambit,

My folate levels at the start were 3.1 against a range of 3.8 - 20. My GP refused to treat this as he felt it would interfere with my B12.

The next blood test I have showed them at 2 so he finally agreed to treat them. My last blood test my Folate was at 20.

It has been a complete nightmare as I go away on holiday in two weeks and I'm not sure how I'll handle that!

We have some b12 already so we are thinking of just braving the self injecting.

[Gambit62 Administrator in reply to Nikkimae]

Hope it all works out - for many people injection is a scary prospect but when they have started the relief of being back in control of their treatment, as well as feeling so much better, makes the worry pale into insignificance.

[Nikkimae in reply to Gambit62]

I totally believe that it's just getting over that first hurdle!

Where is best to get the needles/syringe/sharp box?

[Gambit62 Administrator in reply to Nikkimae]

medisave is a popular source

[Sleepybunny]

Hi,

It may be worth contacting the PAS again. In some cases they can intervene.

pernicious-anaemia-society.... 01656 769467

MPs may be able to help in cases where constituents are being denied their rightful treatment. MPs can be useful in getting speedy answers from organisations. Your MP should list on their website when they have advice sessions for constituents.

"despite the fact he had put in my notes previously due to neuro I should have them two monthly"

Some people find it helpful to get a full set of medical notes so they have proof of what has been written about them and their treatment. Think this would cost over £50 but may be less.

Have you thought of making a complaint? These links may be useful.

nhs.uk/chq/pages/1084.aspx?...

nhs.uk/choiceintheNHS/.../c...

england.nhs.uk/contact-us/c...

b12deficiency.info/b12-writ...

The person who runs this website has helped people to write letters to their GP. Her contact e-mail is on this page.

hdapatientcaretrust.com/ 020 7935 8366

This uk charity can provide second opinions on medical matters eg treatment and diagnosis. There is an online contact form on the website.

gov.uk/government/organisat...

I have heard of people who have been treated unkindly after complaining.

I wish you good luck with getting the treatment you need.

[Sleepybunny in reply to Sleepybunny]

I meant to add that I have heard of people contacting the Dept. of Health. Not sure if it did them any good though.

gov.uk/government/organisat...

I believe it is Jane Ellison MP who is the minister who has responsibility for long term conditions.

[Nikkimae in reply to Sleepybunny]

Thanks for the reply sleepybunny,

I have actually taken your advice and contacted the HD patient care trust, they have been great so far and are hearing my case on the 8th September so hopefully this might provide further insight!

I am going to see how this goes and if all else fails I will have to complain.

[Sleepybunny in reply to Nikkimae]

Wishing you good luck with the HDA. I'm sure many of us would not be in the state we are if all GPs and Consultants were properly informed about B12 deficiency and PA.

[Nikkimae in reply to Sleepybunny]

Totally agree, it's a nightmare! My partner and his family couldn't believe it.

[deniseinmilden]

As you know, your Dr's treatment of you is appalling and appears deliberately negligent.

I know it is incredibly hard when you are feeling so ill but if/when you go again you could try to remember he is paid by the tax payers so is effectively our employee and has a "duty of care" to get you well again.

The most powerful thing I found was to directly question why he is saying what he is. Underline the fact that B12 is totally safe and a cheap option. If he makes statements like "it is in your mind" ask what specific symptoms have suggested this as his diagnosis? What if it isn't? If so then there must be another problem which you must need specialist help for and so you'd like a second opinion on that too (more cost & hassle for him) - and if he's wrong and you just need more B12 to be well how is he going to explain wasting money and resources on an inappropriate investigation and withholding the simple, cheap and effective treatment you require? Especially when you both know it is already working?

Or you could change Drs!

I got my Dr to change his mind and supply me with the ampoules and kit so I can self inject every day. I take sublingual tablets and spray too (+ extra vitamins, etc). I feel if I had managed to get the proper treatment earlier I wouldn't have so much damage and would need less B12 now.

Self injection isn't half as bad as I thought it would be and the benefits of being alive again are huge. Good luck!

[Nikkimae in reply to deniseinmilden]

Thanks for the reply Denise,

That was all really helpful so thank you!

I think we will be taking it into our own hands, Just don't have the strength to keep going back! I am going to order the necessary's to start self injecting then after my holiday try again!

Really appreciate your advice.

[Astridnova]

Maybe, if you see that doctor again, don't go alone. Say you are bringing the other person because you are no longer confident of understanding his explanations. Have the other person take notes.

[Nikkimae in reply to Astridnova]

Unfortunately I've done this several times, once with quite a rude remark from the GP at my partner being there. ' Don't tell me your a doctor too'.

Thanks for the advice

[13georgia]

I was told the same things, from several dr's. . Then I went back to my Endocrinologists, my specialists, made all the difference . She wrote letter

For me to carry with me to address this problem of not giving me the B12.

If you have pernicious anemia, you have to take it once a month the rest of your life.the Endo.also does blood work to check the level .

[13georgia]

This is from the reply above. I also take 100 mg of Ferrous Fumarate tablet daily

On advise of Endo.

[Nikkimae in reply to 13georgia]

Thanks for that Georgia,

I might have to look into this. I'd be happy if I was to be referred I just want someone to look into all this a bit more closely!

[knackersyard]

Conditions like PA often come hand in hand with other Autoimmune conditions.

Keep taking the B12 jabs, but don't assume every symptom is B12 related. BTW, self injection is nothing. That Methyl you have can be injected Subcutaneously, so get some Insulin pins & put it in a pinch of belly skin.

The Gut issues you mention probably caused your Low B12, so get that checked out. Test for H Pylori (GP can do). Look into Leaky Gut Syndrome & Candida.

Do the Thyroid Check Plus 10 home blood test, £89 with TUK10.

homebloodtest.co.uk/epages/...

Sounds like you need a complete Gluten / Dairy Free diet (I'm just facing up to that truth myself 😫 )

[Nikkimae in reply to knackersyard]

Thanks for that Knackersyard.

I'm definitely going to bring this up the GP has finally written to the gastroenterologist to see if they'll refer me for further tests. I really hope so!