Early signs of PA

[Sailinglady]

I've been giving some thought to how long I've had PA. I was diagnosed about 2 years ago. BUT, when i look back at old photos of myself, my skin colour changed to be quite yellowy (my mum says my dad and his mum both had the yellowy skin tone). This yellowy colour has faded out and I'm much more "white" now I've been injecting regularly with B12. Also, when i was giving birth to my first child i used a lot of gas and air, to the extent that my whole body was tingling all over (i remember telling my husband I couldn't turn the TENS machine off. Could that have been because I was low in B12?

I've always been tired and would sleep in the afternoon (I remember"power napping"at lunchtime when i was in my twenties in the lunch room at work, much to the amusement of colleagues.

And I've never been able to walk up hills without stopping (my husband has often wondered if I'll need an ambulance before i get to the top, I've even wondered if i have exercise induced asthma at times. This has also improved with B12.

I also get exercise induced migraines (since my 20s) (and just migraines for no reason at all). These are proving to be less responsive to B12 but have improved.

So, since some of these symptoms date back to my 20s and even childhood, I wonder if my PA has been grumbling along for decades. I suspect finally pushed into the open by an anaesthetic for an operation. I also suspect there is a genetic link (especially since my brother has just announced he's had tingly feet for years).

Has anyone experienced similar? Especially the yellow skin and tingling all over on gas and air?

[bookish]

Hi, no personal experience of either, but it all makes sense. You probably had an underlying genetic predisposition to a B12 (and/or folate) metabolism issue which triggered early, so hard to know when it progressed to PA. I suspect an anaesthetic made me a lot worse too although I don't have a PA diagnosis. I am 5th of 6 known generations and my aunt who was very young remembered visiting her great-great uncle and that he was the same yellow colour that you describe. The gas and air probably heavily depleted what little B12 you still had available. Dad always slept in his lunch breaks and Mum used to make me do the same at school as I was hopeless without sleep. Those of us who did get a PA diagnosis were pushed over the edge by extreme stress, usually illness or death of a loved one, but I'm sure surgery could do it. You could try adding some magnesium in case it helps the migraines - you need enough for methylation so it does link to the B12/folate/B6. Best wishes

[Narwhal10]

Hi Sailinglady,

Please apply for your Medical Records in hard copy so you actually can see when the Medical Profession gave you the diagnosis.

It is absolutely amazing when we are on our own, how much makes sense, what we recall and link. How we managed for years, decades and even in childhood.

I have never had a yellow tinge but on days off, walking along a road, I thought yep, I’m going to collapse, sleep in a park or there is a sun-bed centre. Fall asleep fully clothed. I am sorry, I do not have children.

One sibling loved me having a siesta so copied, as did her husband and children. My migraines were related to gluten and deficiencies. I have had to pull my car over onto the hard-shoulder because I could barely see. Not the safest place for 40 minutes shut-eye. Really wanted the police to find me in my uniform, take pity on me and drive me home.

Known to fall into freezers in a particular supermarket and got accused of shop-lifting because I was just staggering around like a drunk thing. I mumbled that I had just done 4 night shifts in the hospital and was back in the following day, then on-call. All I wanted was some butter, have something to eat and go back to bed.

It is highly likely we have had PA/B12D for years and it is absolutely amazing how we have got through life and survived.

[tomdickharry in reply to Narwhal10]

Hello, a question, please? Your mention of records brings me to a part of my own problem.

I applied for my hospital records and after many reminders received them 3 months later but not in any date order. So it's a struggle sorting through them, and yes, I often give up and try again later.

My big query is about GP records. I've recently changed doctors and all I get told is 'it's not on the computer'. I can't get through to anyone that it's the original paper notes that I'm looking for. I get blank stares or 'don't know what you mean'.

I've contacted every doctor since I was diagnosed in 1989 but no-one claims to know where they are. There is a central records office but apparently they only get records after death.

Does anyone have any pointers, please?

Many thanks.

[thyreoidea in reply to tomdickharry]

Most GP’s have an online system to access your own records, if they don’t you can ask for your own medical record to be printed out for you. A new GP practice will be able to access anyone’s NHS records one transferred to their practice. You have a right to have access to your records. When I have asked for records from my NHS hospital they usually take a few weeks and are always in order, if not you can arrange in date order yourself, documents Re the appointment/test etc if more than one page will be numbered. I hope this helps.

[Narwhal10 in reply to thyreoidea]

I tell people to apply for a hard copy of their notes for a reason. They will find errors in them. An ICB, CCG, Trust, Health Board, have a Data Protection Officer, Caldicott Guardian, Information Governance team.

It incorporates information security and protection, compliance, data quality, data governance, electronic discovery, risk management, privacy, data storage and archiving, knowledge management, business operations and management, AUDIT, analytics, IT management, master data management, enterprise architecture, business intelligence, big data, data science and finance.

I have a long list of Data Laws. Every single record whether it is a prescription, X-ray, email is known as ISO15489-1:2016.

I am curious to know what Sailinglady was told and was documented in her Medical Records, if she went to her doctors complaining of getting short of breath walking up hills.

🤓

[Sailinglady in reply to Narwhal10]

Sorry, didn't see that question at the time. I was diagnosed as B12 deficient Feb 2022 after consulting the ANP with tingling in hands and feet which I'd initially put down to a medication side effect, but when I reduced the dose, the symptoms didn't improve. I'd sat on the tingling for 4 to 6 months. I asked to have my B12 checked and was very surprised when they contacted me to say I was deficient. Because my diet is high in B12 containing foods, we went for injections. I had 6 initially, then stopped. Fatigue improved massively, but not much change in anything else. I was ok for a few weeks, then the fatigue returned and my husband checked my reflexes and found they were very brisk. So, back in the B12, with him injecting initially, then self injecting. Ok again for a few weeks until i nose dived again, and then improved again with some folic acid (no level checked, just asked and the GP said yes).I struggled with reducing the frequency (but did try) and asked to be referred to a haematologist who diagnosed me with antibody negative PA in July 2022.

All of the recognition and diagnosis came long after any initial signs. Even when i had the tingling I didn't seriously believe i was deficient until i had the blood test. Unknown to me, I'd had levels bumbling along at 190 for several years.

So I lay no blame at the feet of the HCPs looking after me, because I assumed all my symptoms were normal and never consulted anyone about them.

[tomdickharry in reply to thyreoidea]

Thankyou, but that's not the problem.

There are two issues. The first is that there are many errors on the computer records and without the original paper notes I can't prove that they exist. The second is that anything done before 1989 - I was born in 1945 - is not even there.

Who has those old paper notes in their buff coloured envelopes that were supposed to follow you wherever you went? My GP claim to be ignorant .

[thyreoidea in reply to tomdickharry]

I apologise. Regarding the buff envelope which used to contain all our medical records at the GP’s I cannot say without researching the matter, I sure so one on this forum will advise.

[Sailinglady in reply to tomdickharry]

Ask the practice manager. Your paper bites should have all been scanned in, or be in storage somewhere. They can be requested. On rare occasions I do ask for a patients "paper" notes to be able to get some extra detail. On occasion, they are permanently lost (i know my childhood records were destroyed in a fire), but they can usually be tracked down.

[Narwhal10 in reply to tomdickharry]

Sorry to learn tomdickharry,

After many reminders received them 3 months later. An organisation has a 30 day time-frame to provide what you ask or must give you an explanation. Use If neither is forth coming it is Data Breach. You can report your Trust, CCG, ICB to the Information Commissioner’s Office for non-compliance.

ico.org.uk

Put everything in writing - it is not a doctor’s responsibility. Practices have practice managers and ICB’s CCG, Trust, Health Board, have a :-

1) Data Protection Officer.

2) Caldicott Guardian,

3) Information Governance team.

4) Medical Records team.

You look up the Data Protection Officer and in writing you tell them. You want an accurate, in correct date ordered set of notes from this date to this date at Surgery and wherever else. On [ date ], you received an incomplete set of notes which are in complete disarray. You wish to receive them in hard copy within 30 days or an explanation for an extension. Write Re: Data Protection Act (2018), you have already tried Re: Subject Access Requests.

Apologies SailingLady, I wonder if your Midwife knew the link about Nitrous Oxide and PA/B12D .? 😘

[tomdickharry in reply to Narwhal10]

Thanks, but it's the GPs paper notes I need.

[Narwhal10 in reply to tomdickharry]

Yes, your GP is part of an Integrated Care Board, or Trust. You are reporting a failure. It is part of a system.

Think of a Railway Network - there’s a points failure on the Line. It is reported by an Engineer, communicated to train stations, a manager or whoever is at the train station announces what is happening. The train driver’s divert or delay the trains. We only see the guards and Customer Service people.

There are many roles in the NHS. It is a case of knowing who does what. A Data Protection Officer can be used to get your data from a hospital, a clinic, a GP Practice.

[Rexz]

Hi SailingladyYes, when I look back, after the fact, and much more knowledgeable about this condition, I recognize symptoms starting at least 15 years before I crashed. They were very subtle and fleeting. A little tingle or here or there but only lasting a short period. Or I'd be at a hardware store and get disoriented to the point of almost blacking out. I'd just hang onto the shelving until it passed. It always passed and I'd think hmmm that was weird then be on my merry way.

It is known that PA or autoimmune gastritis is a decades long process from inception to end stage resulting in PA. The symptoms come on so slowly that people just get used to them.

There is one thing that anyone with a family history of PA should do if they have kids is encourage them to be tested annually for Parietal Cell Antibodies. Although not considered diagnostic for PA by itself a positive PCaB will be the first indication they may have for early onset so they can then start treating themselves. Although the disease will progress that early treatment will preclude a lot of the potentially devastating neurological or peripheral nerve damage.

Rexz

[thyreoidea in reply to Rexz]

Hi, What were your B12 readings pre diagnosis? What other tests did you have confirm your diagnosis. My daughter has a lot of symptoms but her doctor only tests for serum B12 which always come back in the middle of the range.

[Rexz in reply to thyreoidea]

My B12 was extremely low at 70 pg/mL normal range is 232 - 1245 pg/mL.My RBC was low and both MCV and MCH were high indicating megaloblastic anemia.

Other tests you may consider are

Serum Homocysteine

Serum Methylmalonic Acid MMA

These two tests indicate how your body is using B12. So if they are high that may indicate a B12 issue.

Of course the Parietal Cell Antibody and Intrinsic Factor Antibody serum tests.

Hope this helps some. Rexz

[thyreoidea in reply to Rexz]

Thanks, I will check it out.

[charks]

I also always used to nap all the time. And I have had fainting spells all my life. I once fainted and went head first into a chest freezer in Iceland. Then 3 years ago I had a major 'faint' during which I was unconscious for over 30 minutes and A&E could find nothing wrong. I eventually found out I had PA and I think that fainting was one of my PA symptoms. When I stopped taking B12 - because my GP told me I had dangerous B12 levels - I had yet another fainting episode.

So now I ignore my GP advice on B12 and I haven't had another faint since. And although I still enjoy an occasional nap it is the exception rather than the rule. Isn't B12 marvellous.

[Sailinglady in reply to charks]

I've never actually fainted, but all sorts of symptoms which I've suffered with all my life and assumed water normal have now begun you resolve. Postural hypotension being one of them.My daughter (who we now think has PA too, bless her) no longer asks me if her symptoms are normal, because if I've had them too, how would I know what's normal?