Pernicious anaemia sufferers, question please

[nomadwantshome]

I've been afflicted by tiredness for flipping ages. Gone through lots of ideas about what it might be. I started taking b12 sublingual liquid (big dose) and tiredness improved alot. Mentioned this to GP and he suggested testing for my b12 levels. He told me not to stop taking the b12. I did question this and he said definitely do not stop taking it. Anyway, b12 levels were normal.Now I'm not a doctor but would this not scew the results?

I have since stopped taking it and tiredness returned but there was a fairly long gap, can't be sure it was that. I started taking it agianlast week and I have been on the go all weekend which is pretty much unheard of. of course, it may just all be psychological but should I have a test without taking the supplement?

My mother suffered from pernicious anaemia and my understanding was that she received injections because she was unable to absorb B12 in any other form and that that was the main characteristic of the illness. I stand to be corrected on this because I'm sure there have been advances in medicine in the last 20 years and that perhaps this could have changed.

Pernicious anaemia is the inability to absorb B12 due to not secreting intrinsic factor. If you had it, the supplements wouldn't make any difference as it would just pas through you.

What were your levels though? They should be pretty high not scraping along the bottom of normal. How about ferritin? Did they also do thyroid test?

What were your levels though? They should be pretty high not scraping along the bottom of normal. How about ferritin? Did they also do thyroid test?

The supplement is sublingual so not digested through the stomach. My levels for b12 were 545 (170-730). Ferritin was 22 (15-300)
Scuse my ignorance but how would I know if they tested for thyroid (other than telling me!). I can't see anything g on my blood results page.

I've been tested for coeliac and that wS negative. I am borderline anaemic.

Underactive thyroid can cause tiredness and vitamin deficiencies, it would show as tsh and t4 on tests. You would want to see a low in range tsh, say under 2, and a high in range t4 (range varies).
Can you afford to keep supplementing? Maybe keep doing that, or if you can't afford it, stop supplementing and ask for a re-test in a few months. Your levels look ok tbh
Are you treating the low ferritin levels? That will make a difference to how you feel. I take spatone and it has worked well

Underactive thyroid can cause tiredness and vitamin deficiencies, it would show as tsh and t4 on tests. You would want to see a low in range tsh, say under 2, and a high in range t4 (range varies).
Can you afford to keep supplementing? Maybe keep doing that, or if you can't afford it, stop supplementing and ask for a re-test in a few months. Your levels look ok tbh
Are you treating the low ferritin levels? That will make a difference to how you feel. I take spatone and it has worked well

Thanks merci, so would you say the ferritin levels are low then? It's within range and the gp didn't flag it up. I can afford to suppliment but I really want to know what the route cause is. Ive got an a ppt. tomorrow. I'm wavering as you tend to get a bit fobbed off really.

On another note, I think somethings up with my blood sugar levels. I've always been a bit of a bugger if I get hungry but the other day I missed lunch and had a sandwich at 3pm. I had a big crash and could hardly move off the bed, I was going get my dd to call dh to come home early. I was fighting sleep! See that's the thing, I really want to know exactly what it is. That's what has prompted me to make an a ppt. And also what prompted me to start taking the supplements again

Waves to merci - it's been a while.

That ferritin needs to be at least 70 and preferably 90. If your GP thinks it's OK then they need a refresher course, although having said that I went through three GPs and 2 endocrinologists before I got one who looked at my ferritin level and wanted to treat it. I will probably never know what the root cause was, or whether the ferritin deficiency made me hypothyroid or whether it was the other way round.

I had horrendous problems with blood sugar until I fixed my B12 and my ferritin. Now I still need to eat regularly, but I don't stand in the baguette shop shaking from head to foot and unable to string a sentence together any more.

D

Did you have a regular blood test that looks at red blood cells etc. Size of red blood cells can indicate cause of anaemia. Results are different depending on whether you're iron deficient or b12 deficient?

Interesting about ferritin levels RockinD. Mine were 7 when I was first tested, managed to get them up to 15 after a year of iron tablets then moved house and was never tested again.

Very interesting, thanks. I have my results in front of me. First test I was low on white cell count and haematocrit 0.359 (0.37-0.47). My haemoglobin level was 12. Ferritin was 22. There are some mean cell and distribution widths but I don't know what these are. As I was only low on 2 counts I was retested but was only just within range. They were happy with that.
Oh and folate serum was 12.9 which looks well within range of 3-23.
Can't see any tsh/thyroid stuff.

Rockind now you mention it I get shaky when I'm hungry. I was just putting it down to feeling run down. I did actually have slightly raised blood sugar last year, I think it was 5.7 if I remember rightly but in the mean time another gp thought it was ridiculous that I was further investigated for it. I don't see her anymore...

Hiya RockinD (waves madly)

Yep, definitely need to get that ferritin up from off the floor! I'd go back and ask for a thyroid test too, just to rule it out. You can get lots of different types of iron supplements but they can make you horribly constipated, which is why I use the spatone. There's floradix as well which people on here have recommended.

How come the range is 15-300 for ferritin? I think I'll have to do some more googling! I've had spatone and floradix whilst pg. Will try it again!

Been to docs this morning. He's going to test my blood sugar, thyroid and do a liver function test aswell as a couple of others.

Hope you feel better soon! Wrt the thyroid, it's worth getting the actual results plus range as a tsh over 2 is worth keeping an eye on even if it comes back 'in range'

Hope you feel better soon! Wrt the thyroid, it's worth getting the actual results plus range as a tsh over 2 is worth keeping an eye on even if it comes back 'in range'

I suffer from pernicious anaemia (inability to absorb B12) and I would strongly suggest you keep pushing on this. My B12 levels were normal when I broke down in the docs due to tiredness. She did a barrage of tests and all were fine, but she did note that my B12 levels were in 'the lower end of normal' range. She also said that because I have a certain antibody it was likely that I would develop PA at some point. Luckily the info sheet she gave me included details of the Pernicious Anaemia Society and the information they have provided helped me push to get regular jabs of B12 and as a result I am able to work and be the mum I want to be to my kids.

It is a terribly misunderstood disease and apparently if you have PA your B12 levels can be fine. They need to treat the symptoms not the blood test currently in standard use - which is next to useless. Google 'Active B12' test as well, it is the latest test for B12 deficiency and see if you can get that done to at least put your mind at rest if nothing else.

Failure to diagnose PA (if that is indeed what you have, can cause neurological damage not to mention the strain on your relationships and your lifestyle. Sorry to be so dramatic, but if I can help prevent one person struggling with the awful effects of this condition then hopefully I am justified. Good luck!

I am another long-term sub-lingual B12 popper. I never miss a day. I also suffer from low iron levels caused by heavy periods. I take Florodix tablets rather than the liquid, which stained my teeth.

Boy do I feel rough when either level gets low. Fortunately the B12 problem was discovered during a private medical examination paid for by my husband's work. I really feel scared when I think how long it might hwve gone on for, otherwise.

Thanks all. I'm not taking anything just yet, I'll see how the blood tests go. If they come back 'normal' then I'll start stamping my feet. The receptionists can be so dismissive. They couldn't understand why I wanted a copy of my results last time, she had to ask for 'permission'!

Got my printed results (after a bit of persuasion!). According to the reception ist they were 'normal'
serum free T4 = 9.7pmol/L no reference ranges
Serum TSH level = 3.24mU/L (0.1 - 4)
Blood glucose (fasting)= 4mmol/L

There were also two values that were shown as low:
GFR calculated abbr. MDRD = 75mL/ min LOW
Haematocrit = 0.351

Haemoglobin was 11.8 - just above range!
Quite a few others but I presume they're all ok.

Well there you are!! 'Normal' my arse. So ferritin is scraping the bottom and tsh looks suspiciously high as well. I used spatone two sachets a day to raise my ferritin quickly altho not everyone has the same success. Wrt the thyroid, hopefully you will get good advice on here. It's hard because in the UK we are so reluctant to treat. Maybe ask for another test in autumn on the grounds it is quite high and t4 is prob in the lower part of the range. You can also get antibodies tested and if positive they should treat once you are over the range (according to 'understanding your thyroid').