Latest GP diagnosis is... I’m getting old! I'm 55! Help with next steps please… 😠

[KBird01]

Hi everyone.

So had my GP follow up since my previous posts. My ferritin is 26, which the GP informs me is the highest it’s been since they tested in 2017. She assures me it's fine as it’s ‘in range’ [10 – 180].

She insists I ‘categorically cannot have low B12 symptoms’ with an ‘above range’ B12 reading, despite me telling her I had been supplementing up to 2 weeks prior to the test.

She then proceeded to cherry pick my symptoms, finding individual diagnoses for each and ignoring the rest.

I finally gave up when she told me that at 55 I shouldn’t expect to be doing gym and Hiit classes and should just do 'gentle' pilates instead – also I need to accept I’m 'getting older' and my 'brain won’t be as sharp as it was'.

My hobbies previously included mountain and fell walking, mountain biking and off-road running. I work as a leadership consultant, training senior managers. 😡😡😡

So I’m sure you’ll understand why I’ve decided to take my health into my own hands. My plan, which I’d welcome comments and advice on, is:

1️⃣ Have a private Pernicious Anaemia Profile test for:

FBC, Reticulocyte Count, Folate, Iron, TIBC, Active B12, Homocysteine, Methylmalonic Acid, Intrinsic Factor Abs and an autoantibody profile including (Liver Kidney Microsomal Ab, Smooth Muscle Ab, Mitochondrial Ab, Gastric Parietal Cell Ab, Reticulin Ab, Mitochondrial (M2) Ab, Ribosomal Ab).

2️⃣ Once I’ve had the test, start on iron supplements every other day and continue with private iron testing every few weeks until my levels go up.

3️⃣ Commence B12 supplementation if blood test shows the need. (SI if required)

I've had no supplements since 5th Feb, when I SI 0.6ml Hydroxycobalamin (I found a slightly lower dose gave me less negative effects).

❓❔Is there anything else I could/should consider to get the most accurate results from the blood test? It is very expensive, so I want to maximise my chances of an accurate result (whatever that might be).

Thanks in advance for any help, you lovely people! 😊

[charks]

Your GP appointment went exactly as I predicted. You could go and have private tests but the likelihood is that your GP will dismiss them. What makes you think you have B12D? Have you had tests in the past that showed a low level or are you having symptoms that started to get better when you took B12 supplements? If the latter I would resume supplementing. B12. If it sorts out your symptoms then you must have B12D. I know this isn't ideal but B12 isn't toxic and it can't harm you. I assume your GP has ruled out other more serious conditions.

[KBird01 in reply to charks]

Thanks. No I haven't had low levels in tests, as I was on some low-ish dose B12 supplements prior to my first test without realising this could be an issue.

My symptoms are what leads me to think I have B12D, although looking at my ferritin levels, iron could also be a factor.

The GP at least has done a comprehensive set of tests and ruled out immunological conditions, etc. I'm having a scan on my Thyroid, but all test show no prob.

I did have some improvement previously when supplementing, particularly SI, but had very negative responses from every GP, which stupidly on my part meant I didn't follow a consistent regime.

I would basically be doing the tests for my own peace of mind - i.e. knowing what I was treating, or not if everything came back negative. If positive, I could set up a consistent regime to self-inject.

I don't have any intention to discuss this further with the GP, as every conversation has been a waste of time or worse.

[charks in reply to KBird01]

Please bear in mind that you can have quite a high B12 level and still be B12D i.e. functional B12D.

[KBird01 in reply to charks]

Yes, if only our GP's knew this... 😑 That's what I'm hoping I can determine from the tests really.

[B12life in reply to KBird01]

what was your lowest b12 reading?

Also agree that b12 levels can be high and yet have a b12 deficiency?

Are you vegan by chance?

[KBird01 in reply to B12life]

Lowest was 89 on Active B12 [37.5 - 188]. I had been supplementing with Multivits including B12 up to a few days before. I'm a vegetarian, but not vegan. No meat, or fish, but I do have lots of dairy and also eggs.

[B12life in reply to KBird01]

you need a min of 2.5 mg of b12 intake daily. It can't be lumped into one meal a week. It has to be daily or your body will pull from the stores of b12 in the liver. Not sure why it doesn't take the excess from the say one time we eat an excess but from what I read it doesn't. This it may be that you simply just need to do injections to get your levels back up, then orally supplement b12 daily to ensure the levels stay up. If the deficiency is diet related, the docs give b12 injections to fill the deficit. Then put you on oral. So it's hard to say, if it's diet or some absorption issue or both.

I don't know much about active b12 levels and what the numbers mean. I am familiar with serum b12. Perhaps someone on this forum can speak to what your active b12 result means.

I'm not sure if oral supplements can skew those results like injections do. The serum b12 levels become high after injections because the b12 from those injections end up in the blood stream, thus it no longer is an accurate reading and thus the docs should but don't continue injections based on clinical results, basically symptoms.

In my case, I do not absorb b12 orally at all.

In your case, find out what active b12 levels are considered low by asking this forum, then go from there.

[Hidden]

I'd say that was a good plan , your ferritin goes down when you start b12 so keep that in mind. I have similar ferritin levels to you and feel awful. After a month of 36mg of ferrous bisglycinate chelate only now starting to feel like I'm not dying every day with severe heart palpitations, dizziness and weakness. Doctor said mine was also in range but our levels show we are DEFICIENT in iron (stage 1 - iron stores depleted). They dont bother telling you to supplement unless you get anaemia (stage 2 when serum iron is depleted). Don't forget your folic acid with your b12 if you do supplement b12. I think you have to be off b12 for a few months to get an accurate active b12 reading as it may still come up as high

[KBird01 in reply to Hidden]

Thanks Hidden . I'm sorry you've been feeling rubbish too, but it does help to know I'm not going mad, so thank you for sharing!

I've kind of given up on the active B12 as a measurement, but do you think the others will show OK if I haven't had any supplements for about 6-7 weeks?

[Hidden in reply to KBird01]

I don't know but hoping you get some answers soon xx

[Kimbo4379 in reply to Hidden]

I got the same response from GP no treatment needed my ferratine level was 12 ! i also have PA and bi monthly B12 injections I'm into my third week of iron tablets so keeping my fingers crossed it helps with really bad fatigue

[KBird01 in reply to Kimbo4379]

Good luck Kimbo4379 ! Can I ask if you had any symptoms?

[Kimbo4379 in reply to KBird01]

I think as others have said it's hard to work out which symptoms relate to which condition but fatigue is without doubt the one that affects me the most I get up in a morning and within 1.5hrs I'm asleep again and it's on and off all day. I've probably list about a third of my hair over the last 20 years I have a lot of nerve pain especially in my arms and legs that keeps me awake some nights. When I looked at my ferritan records recently it's been between 20 and 35 for a number of years. I also take vit D

[Hidden in reply to Kimbo4379]

It definitely will help. I was weak as a kitten last month and now feel still very tired but not physically unable to do things which is where I was at and it was truly awful. I have been eating liver 2 times a week also, its massively helped get my strength up.

Some people have no symptoms with low ferritin apparently but my symptoms were terrifying as I felt starved of air, couldn't walk from one room to another without my heart thumping as if i'd just ran and couldn't lift or do anything. Always suffered with extreme fatigue/palpitations but the last 6 months were horrendous with the new heart symptoms. Felt like my heart was struggling to beat, irregular and was dizzy non stop, falling over neurological symptoms etc. Its hard to tell where the b12 symptoms end and where the iron symptoms begin but when you have both issues together it is hard to just get through the day.

I think afteer 3 months is when the ferritin will show a significant increase and if not theres an absorption problem.

[KBird01 in reply to Hidden]

That really resonates with me. I've been out for a walk today, but was ridiculously puffed! Thank you for your replies. You've definitely helped me feel more optimistic for better health in future! 😊

[WiscGuy in reply to Hidden]

"Felt like my heart was struggling to beat, irregular and was dizzy non stop, falling over...."

I was having similar symptoms and attributing them (and everything else bad) to B12 issues, including rising blood pressure over a year or two . Due to rising blood pressure, before visiting the clinic for something else, I called ahead to request blood pressure check. The nurse was puzzled by pulse, which in sequential counts was 28, 42, 42, rather than the expected 60-70. The short version of the story is that within a couple of months I had a pacemaker. I bring this story up as a caution to not fall into the trap of attributing everything bad to B12 issues. Even if related (which often can't be determined), other examinations, and sometimes treatment, can be necessary.

[Hidden in reply to WiscGuy]

I've got low blood pressure but thanks for the warning. I was referred to cardiac back in october, still nothing has come of it haven't even got an appointment yet. Was also referred over 2 years ago, again no appt ever came. A lot of my symptoms have improved since taking b12 but sometimes I am worried there is something is very wrong but I can't get anyone to listen.No one would even entertain the idea of b12 deficiency so had to si and it has helped with Neuro symptoms. Heart issues have improved with taking iron thankfully, I've had to help myself. After being shouted at at a walk in clinic and fobbed off multiple times at gps, not to mention being too sick to wait for hours upon hours in a and e, I just gave up being helped/seen to for the heart issues I've been having . I'm 34 so wasn't taken seriously, treated like a dog really. Was told I would get an overnight ecg, now I'm told being referred to arrhythmia clinic instead but still no word.

Really felt I was dying every day but taking a higher dose of iron has improved my heart ten fold. Doctors don't listen to me, I was told my dizziness was related to standing up too quickly even though I was dizzy all day.I'm still unwell but thankfully not as bad as I was a month ago. Unfortunately I'm just grasping in the dark with regards to health and playing detective with my blood test results trying to work out things as I go. I'm told I've got Chronic fatigue syndrome - so it's easier said than done trying to get further investigations. I have no faith that I will receive any help from the nhs, after being that sick and not being taken seriously, feeling helpless and like a nuisance..I'm just taking one day at a time praying for better days healthwise. Grateful to have some improvements. Quality of life is rubbish but better than 6 months ago..

[Wwwdot in reply to Hidden]

Rachael

Sounds like you have experienced a horrible scary time. But I see lots of chinks of blue light shining through your post which supports your thought process.

If you don’t already keep a daily journal of what you take, what you do and your symptoms. It’s invaluable as a self help guide and some health professionals will use it in the future.

I wish you all the best with your recovery.

[Hidden in reply to Wwwdot]

Thankyou, I do keep a journal but I forget some days need to be a little bit more disciplined! Thanks for the message

[KBird01 in reply to Hidden]

I can so identify with your situation Hidden . I'm lucky that I don't have the level of illness you describe, but the worry I frustration, I absolutely share. The treatment by medics has been awful. I had a query fibromyalgia diagnosis from a neurologist at the beginning. I'd have more respect for them if they were honest and said they didn't know. I do wish you well on your journey. 🤗

[Wawacito]

“I finally gave up when she told me that at 55 I shouldn’t expect to be doing gym and Hiit classes and should just do 'gentle' pilates instead – also I need to accept I’m 'getting older' and my 'brain won’t be as sharp as it was'.

I am 55 as well and was recently told that at I am told old to have started running two years ago and that at my age I should no longer run. (Mentally gave the doctor the two finger salute.)

Am still running! Working out at the gym plus Pilates as I enjoy the classes.

Do what feels good to you.

As for the ferritin: according to The Iron Clinic, one is on the reserve tank level when ferritin is below 30 ng/ml. Ideal is 30 - 100 .

[KBird01 in reply to Wawacito]

Loving your 2 finger salute there. Absolutely that! A woman just ran past me on her way up the moor. She was at least 70! 💪Thanks for the info. I've never heard of the iron clinic. I'll look it up.

Go you! 👊

[Janeames]

Idk about your tests but your doctors advice to give u activities is so wrong. I live in California and doctors here want u to do the type of activities u do. A slow sedentary life is not the way to a healthy old age. I'm 62 and have to keep up activities or my body aches.

[KBird01 in reply to Janeames]

Exactly! I do feel my GP lost the clinical, moral and intellectual arguement at that point. Keep it up, I'm right with you! 💪

[Janeames]

Not a tinnitus care but check magnesium. B12 d and magnesium cause bone loss. Doesn't matter whether u r male or female. And do add weights. I have to remember to do my weight lifting. It's not something I like to do but it's good for u. Cheer.

[KBird01 in reply to Janeames]

Thank you Janeames ! 😊

[Sleepybunny]

Hi,

I think I understand why you feel it's necessary to treat yourself.

I had to as NHS refused to treat me despite years of typical symptoms and I was scared that my dementia symptoms and spinal symptoms were going to become permanent.

Most of my serum b12 results were well within range although I had one result well below range. PA and coeliac tests were negative.

I really tried to educate my doctors but all to no avail.

Gastrin and pepsinogen tests might also be useful if you can get them.

Testing for PA

pernicious-anaemia-society....

Gastrin test

labtestsonline.org.uk/tests...

IFAb test

Some labs say to leave at least 48 hours after a B12 injection before testing IFAb and some as much as two weeks.

Iron Tests

labtestsonline.org.uk/tests...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites, B12 films and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Next link is to a thread about Patient Safety, has lots of useful links for those who've had difficult health experiences.

healthunlocked.com/pasoc/po...

I'm not medically trained.

[KBird01 in reply to Sleepybunny]

Thank you as ever Sleepybunny . I think I've decided to get the Blue Horizon checks mentioned in my post, then take it from there. I've had 4 years of lack of, or mis-diagnosis and am no further forward, so time to move on. Time's precious and mine's slipping away.

At least I had a comprehensive set of blood tests from my GP that have ruled potentially serious things out, so I feel more confident to crack on!

From the links you sent, it looks like I should be OK with the Parietal Cell and IFAB tests with having no supplements for around 6 weeks, so that's good news. As soon as that's done, I can start my own therapeutic trial and take it from there.

Thank you again - you literally are a life-saver (and a sanity-saver too!) 😊

[B12life]

I have always been a Tocce and yet in 2020 ended bed ridden. Fatigue was beyond unbelievable. Showing exhausted me.

Docs diagnosed the low b12 but ignored it and stated I didn't need injections. I knew I did as when I got them I felt impact. So I hunted down a doc who would give me unlimited b12, until I found this forum and how to get my own supplies and SI.

Another thing that gave me devastating fatigue was severed low vit d from not having a gallbladder. I now take 5-10 IU per day (summer/winter). They had to give me 100,000 IU per week for 4 months to get me back to normal but the 5/10 keeps me in range now.

Another thing that would bring me down for a month or more was insulin resistance. It was so bad that it felt like a recurrence of mono and was often told it was a virus. It was happening once a year and with my career, I couldn't have that. I figured out that it was my sugar intake. When increasing sugar after a month I went down for a month. No text book has those symptoms. It wasn't until I eliminated sugar that I solved this.

In those three cases spread out over the years, in all but the vit D, I had to find my own solution.

You are on the right path!!!

Back to the b12. I went from being bed ridden to now doing 10 mile hikes with a backpack- 16 lbs.

it takes me injecting twice a day. 3mg / day split into two doses otherwise the kidneys dump it.

I'm 50.

It is absolutely rubbish that you are old.

What helped with the brain fog was b12, then high dosing b1 (thiamine). B1 high dosing requires other vitamines to be taken so read up on how to do that. I take 250mg b1 orally per day and 800mg magnesium per day along with a b complex.

It took working very slowly at being able to exercise. I couldn't do much the first 6-8 months until I got my b12 levels up. I didn't do b1 until 6-7 months ago. So start with b12.

As long as you have had your liver and kidney function tests done and any problems there rules out, b12 .

[KBird01 in reply to B12life]

Thank you so much for sharing this B12life . TBH the GP's remarks around my age, served only to

a) Make me angry that this is the level they've resorted to

b) Confirm how little they really know, but are also unwilling to learn

c) Make me determined to get to the bottom of this myself and not be influenced by advice based on inaccurate information and assumptions

It's really heartening you were able to resolve things. The one good thing the GP did was order a comprehensive set of tests that have ruled out many other things, so I feel more confident to go ahead with my therapeutic trials after my own private blood tests.

Here's to both our future health! 😊

[Hockey_player]

I had the same problem in my 40's. Very fatigued and was told I was just getting old. It took a couple of years to find out I had pernicious anemia. I took supplements for years. You need to take a lot: I took 1000 times the daily dose. The problem is that with pernicious anemia, there is a problem with absorption. If you take a lot of it, your body will absorb a little. A few years ago I started to have problems with my feet and switched to injections. I need the injections now and take one every 3 weeks (one per month was recommended but that is not enough to make me feel good). I was so very tired back then. Now I play ice hockey sometimes 5-6 times per week, often with men. When I am not playing hockey, I am skiing. I am 61 years old. Instead of giving up your fitness activities, it is better to address your health issues. A less expensive solution is to take injections to see if it helps you or not. They recommend once per day initially then once per month. Keep a journal and record how you feel. If you start feeling like an energizer bunny again like I did in response to the B12, keep taking it and assume you need it for life. An alternate solution would be to take sub-lingual B12. Take large doses (1000 times a daily recommended dose). See if that helps. I need the shots now but the supplements worked for a long time for me. The B12 will do you no harm. If it makes you feel a lot better, then it tells you what the problems is and you don't need to pay for those tests.

[KBird01 in reply to Hockey_player]

Thanks for your reply Hockey_player . Loving that you're doing the things that keep you happy. I'm absolutely determined to do the same. As far as I'm concerned, the GP lost any professional credibility when she came out with the statement about my age! I've booked a set of blood tests for next week, but whilst I wait for the results, I'm going to start on iron supplements and also a therapeutic trial of B12. I have injected previously, just not consistently as I kept being put off it by various GP's and other health professionals.

So thank you for the reassurance that I'm on the right track. Onwards and upwards! 😊

[Hockey_player in reply to KBird01]

If you get a positive test result for pernicious anemia, you will know you have it. But if it is negative, you might still have a problem. pernicious-anaemia-society.....

[KBird01 in reply to Hockey_player]

Thanks Hockey_player . Seeing as I've been off supplements for a few weeks, I thought I'd take the opportunity to at least have a go. With the view that if it's negative, I'll do a therapeutic trial of supplements anyway. The tests I'm having are about as comprehensive as they come here. Just another step along the way...

[Sleepybunny in reply to Hockey_player]

A diagnostic flowchart from BSH Cobalamin and Folate Guidelines that mentions Antibody Negative PA

stichtingb12tekort.nl/engli...

Link to BSH Cobalamin and Folate guidelines document (UK health document)

b-s-h.org.uk/guidelines/gui...

Martyn Hooper mentions Antibody Negative PA in his book

""What You Need to Know About Pernicious Anaemia and B12 Deficiency"

He's the chair of PAS (Pernicious Anaemia Society).

NICE CKS guidance on B12 deficiency and Folate deficiency includes the comments

"Antibodies to IF are very specific for pernicious anaemia, however they are only present in around 50% of people.

Anti-parietal cell antibodies occur in 90% of people with pernicious anaemia, "

cks.nice.org.uk/topics/anae...

[KBird01 in reply to Sleepybunny]

Thank you as ever Sleepybunny . The flowchart shows I'm taking the right course of action I think, so that's very reassuring. I'm feeling absolutely terrible at the moment, with palpitations and twitches and brain fog, but have my private blood test booked in for next Tuesday morning. Straight after which I'll be SI some B12 and let's see...

My brain's a bit broken at the moment, so I'll definitely be doing more reading once I have my mental capacity back! Onwards and upwards! 😊

[RoseFlowerDew]

I feel for you….being 55 is not much of a reason and I guess the doctor was wet behind the ears?

I’m a bit too tired for a long reply but see my reply to the post ‘Neurological Systems not Accepted’ for more thoughts.

[KBird01 in reply to RoseFlowerDew]

Thank you RoseFlowerDew . Scarily, she's probably not that many years behind me. It's the fallback position of saying, 'It's your age', rather than admit they don't know and doing something about it that really gets me. I've read your posts and can so empathise with your situation and feel myself fortunate that I don't have things as bad as you - which is no use to you at all of course!

I completely agree with your statement that it's not the medics who stand the consequences of their misdiagnoses, it's us as patients.

I'm currently absolutely exhausted, with a numb nose and left cheek, just having come off a training course where I kept losing my train of thought. I'm the trainer. My GP said not to worry about losing my words, as no-one would notice!

So thank you again for reaching out. I know you've felt very lonely on your journey and do wish you the best of luck with yours. Just to say, you've helped give me the strength and determination to know I'm taking the right steps in taking my treatment into my own hands. 🤗❤

[Hockey_player]

I have been reading an interesting book and it made me think about your quandry, It is called Fast after 50: How to Race Strong for the Rest of your Life by Joe Friel. The book has training advice for people who want to stay fit from their 50's and way beyond. A lot of people become couch potatoes after 50 but this book is for the rest of us who want to stay very active. I wish you all the best in getting your energy back!

[KBird01 in reply to Hockey_player]

Thank you for thinking about me Hockey_player . I'll definitely check this out. I'm ticking the days off until next Tuesday when I have my blood test. Straight after I'm starting on iron supps and B12 SI. 🤞 I'll start to see enough improvement to start some proper exercise soon after. Thanks again. 💪