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Pernicious Anaemia Society
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Suggestions for doctors appointment on Monday...

Hi Feels a bit odd posting this as I’m now an admin here but here goes anyway! Sorry it’s horribly long…

A bunch of background… Was diagnosed with PA a year go with B12 <125ng/L (range 180-2000ng/L) with positive anti-intrinsic factor antibody result. My symptoms were extreme tiredness, breathlessness, brain fog, GI issues. I got tested after a family member was told she had PA. I also had low lymphocytes 1.43x10^9 (1.5-4x10^9) and low TSH 0.12 (0.2-4.5mU/L) with my free T4 16 (9-21pmol/L) at the time. MCV was 82 with no signs of anaemia. Liver, kidney, glucose, tTG IgA and others normal.

TSH: back within range @ 0.31 in April and was 0.37 in September (free T4 16 and 15 respectively – nothing else thyroid has been tested.)

Lymphocytes: have been fluctuating around the low end / slightly deficient (lows correlate with having a cold so not overly surprising.) Since I started getting B12 injections one of the most noticeable positive changes was a massive decrease in the numbers and severity of colds. Other WBCs are well in range except basophils which are bottom of the range. Currently slightly low – I’ve had a minor cold I can’t shake since christmas.

Ferritin: diagnosed with low ferritin as a result of becoming breathless again in late August @ 13ug/L (15-200ug/L) and put on 210mg twice a day of ferrous fumerate. GP1 wanted my levels up to over 40. Ferritin increased to 22 by late Sept. GP2 (who saw me for something else) was happy with this so did not want my ferritin retested at the end of my 3 month course so I tested it privately in early December (Ferritin 42.32ug/L (13-150), Iron 20.73umol (6.6-26), TIBC 76.03umol/L (41-77), Transferrin saturation 27.27% (20-55)). GP2 had my ferritin retested last week, 2 months after finishing the tablets and it had fallen back to 24. No further action on this according to letter from GP2 on Friday. :-/

Other bloods: MCV has been low in range throughout (lowest was 79 highest 83) with my latest last week of 81 (range 78-98fL). Haemoglobin and haematocrit mid range every time measured.

Folate: has been a bit rubbish but this has not been tested again since I found this website and started learning more about PA in mid Aug 16! Was 4.3ug/L (2.8-20) then. I’ve been taking multivitamins (with 200ug) and an additional separate 200ug tablet, both when I remember to which is maybe 5/7 days.

B12: I seem to be one of the folks who measure low B12 after injections – 373ng/L @8 weeks post 6 loading doses and 413 @8wks post injection later in the year. The highest I’ve measured is 822 @2weeks post injection. Several GPs were confused by this and I’m now on 2 monthly injections as a result. Feel really crappy by 6weeks post injection though with increasing brain fog and increased sleep / tiredness though its hard to separate low B12 and low ferritin symptoms.

Not had Vit D tested (GP2 + nurse said no) but am vegetarian and obese (and live in Scotland :-P ) so apparently those increase my risk of being deficient.

Anyone still awake?? Well done if you got this far! :-P

I feel like rubbish again with brain fog, mixing up words, exhausted and breathless even though I only had my B12 injection last week - it’s been pretty bad for weeks.

I’m off to see GP1 (who wanted my ferritin @ least 40 and diagnosed me with PA originally) on Monday in the hope that he will:

- prescribe more ferrous fumerate as it appears I can’t keep my levels up otherwise

- test my Vit D – not asked him yet. Worth a try!

- possibly recheck folate levels

- ask if can change to 6 weeks for B12

Anyone have any suggestions what else I should ask him? I just want to feel well and not crappy all the time.

I’d rather my GP was keeping an eye on VitD and ferritin etc but I will treat myself if I have no choice.

Thank-you for reading!

27 Replies
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would suggest you post on TUK forum re thyroid.

healthunlocked.com/thyroiduk

might be worth double checking on diabetes

wish you best of luck on 6 weeks - most GPs wont countenance less than 8 because of the licensing - which is really irritating because if you buy from Germany the info leaflet recommends monthly - just the quirks of the licensing system in the UK

possible that there may be more than one absorption problem - have you been tested for coeliacs? iron does seem to be a particular problem.

definitely ask for folate to be retested - would be good to know if supplementation is working.

definitely ask about vit D

and silent scream on GPs being confused by the low B12 results. The studies on hydroxo v cyano retention might show that on average people retain hydroxo twice as long as cyano but they also showed significant individual variation with significant numbers retaining cyano longer but long ago realised that grasp of basic mathematical concepts like averages and variances is pretty low ...

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Hi Gambit62 Thank-you.

Fasting or random glucose has been tested 4 times this year (and on an off since 2005) and all came back nowhere near the cut off - last was 5.4mmol/L (<11 random = mid morning I think) in Sept. Both parents are type 2.

I had tTG IgA (DS2) measured in Jan16 and it was 2.2U/ml (0.1-5) on a normal gluten containing vegetarian diet. Are there other tests for coeliacs?

Yeah one GP sort of peered at my b12 levels while on injections and frowned a bit, looked puzzled and said "Its a bit low isn't it, would have expected higher" and changed me to 2 monthly doses. Initially it was temporarily as I felt crap on 3 monthly and also started to have numbness and pins and needles in one leg/foot over the summer (8 months after PA diagnosis). An MRI has since shown my L5/S1 disc is bady compressing the S1 nerve root and I was having symptoms all down the corresponding dermatome (nowhere else) . I've had physio for it and thankfully (touch wood!) I have few symptoms of this now. Another GP has since agreed to the 2 monthly injections continuing indefinitely since my levels were so ("inexplicably" !!!) low.

Thanks for the hug Foggyme :-)

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Not really up on tests for coeliacs

You mention both your parents being type 2 diabetic - are there other family members with history of diabetes going back through generations - people think GPs know about diabetes but they often don't - think there are just two types when there are actually a whole bunch of variants - there's a MODY (2% of diabetic population) variant that runs in my family - onset mid 30s to late 40s ... and its a dominant gene. Just mention it - there are some MODY variants that result in very low level problems that can go unnoticed for years. Has your GP thought about HbA1C as a back up to fasting bloods?

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I think 1 grandfather was type 2 too, possibly his mother too but no-one knows for sure. All diagnosed in late 50s / early 60s whilst overweight / obese. Not had HbA1C done before. Will ask about it.

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Hi Taka. Hey...Admin's are people too so post away. Know I do when the need arises - I just whip off the admin hat and turn into a user (of forums, I hasten to add. Oh, and B12 😄)

I've arrived at your post a bit late but I'm thinking - have a few thoughts but would like to come back tomorrow when I might have a bit more brain...

Just popped along to say sorry you're struggling...this thing is a beast!

Back tomorrow....here's a hug 😄

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Hi - I'm no expert but love the work done here to help us all - I'm Irish though not living there, and something in your post stood out - vegetarian & obese - it sounds like you accept the latter and I wonder if there's a reason for that? From a health point of view, isn't that something your health carers should be supporting you with? For the extra health benefits? (Been there, bought the T shirt FYI!! And Common Celtic thing I think)

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Hi Shattered-FedUp I've had an eating disorder in the past so I've had quite a bit of support over the years. I've only been at my GP practice for a short while (the 1st appointment with a GP there was when I got tested for PA!) and my weight was discussed (and support offered then) but I told him I wanted to do it on my own. I feel less pressurised that way. My weight was coming down gently until my back issues started and I couldn't exercise! Its now stalled though it looks like I can start back with my sport again in a week or so. Me feeling a whole lot less shattered would help no end too as I'm currently eating whatever is quickest as I'm exhausted and feeling too crap to cook from scratch except at the weekends. I lost weight over christmas (!!!) as I used up a bunch of holidays and had a couple of weeks off and could devote energy to it!

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Snap! Injuries have completly banjaxed me.. I would only offer my top effective support network to help as I was just the same re doing things in my own way & time - www.weightlossresources - you can have a look around it for free, far cheaper than weight watchers etc and for me far more effective- I keep saying it's my DNA - we're the ones who inherited the ability to survive an actual famine so we know how to hold on hard to a potato!! If you Join up let me know and I will send you my user name & history on it - you might inspire me to get cracking again because I'm sure it's my weight that's caused me so many injuries in the past 18 months - never mind the B12 issues, exhaustion etc x

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I sometimes use myfitnesspal.com - it a similar idea I think and free, though slightly US orientated. I use it to keep an eye on my eating and exercising but also to keep a record of my thoughts and feelings if I notice old habits are creeping back in & my mood is affecting my eating patterns.

Mind you it only helps if I'm awake enough after work to cook something sensible rather than whatever is the quickest so I can go to bed... :-/

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After I had serious iron deficiency anaemia and my ferritin went down to 3, the GP wanted it up to 100 to be sure I was ok. In England there has been a push for more checking on Vit D from Public Health England. A lot of people I know were found to be low, including me

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A ferritin of 100 sounds like a pipe dream at the moment! :-(

From what I can tell the Scottish equivalent just tells you you need to supplement Vit D. To be fair that was what the nurse mentioned last week when I was having my bloods taken.

gov.scot/Topics/Health/Heal...

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City Assays in Birmingham - they have a website - will send a Home Testing Kit for VitD checking. Needs to be over 100 pmol/L - around 28 GBP's.

Iron is better absorbed with VitC. There are many types of Iron and some are better than others. Have you heard of The Lucky Iron Fish - have a google :-)

Your FT3 needs checking and the Thyroid Anti-bodies. If the TSH - FT4 and FT3 are LOW in the range - then it is possible you have a Pituitary issue and Central Hypothyroidism as opposed to Primary.

Low levels of Iron - Ferritin - folate - B12 - VitD have a detrimental effect on the performance of the thyroid ...

thyroiduk.org

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Thanks for the Vit D testing info. :-)

I'll ask the GP about testing the rest of the thyroid stuff but I'm not sure I he'll go for that and I may well have to test it privately. TSH has been low (with 1x under - but when my B12 was v v low) 4 times since 2009 and free T4 solidly mid range at 15 or 16 (9-21pmol/L) every time. Should the free t4 be higher since the TSH is very low in range?

Thanks for the suggestions BethattheBeach. Sorry to hear of your problems. Not tried no dairy for a while but it made no difference when I previously tried it a few years ago. The biggest thing that made a difference was getting B12 injections! I went 8 months with no cold for the first time in well over a decade (after treatment started) and colds since have been very minor affairs instead of totally flattening me for days.

My guess is that half a ton of my body functions were struggling when I got my diagnosis of PA. Having disordered eating spanning several years a couple of times in the past won't have helped anything either.

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dl.dropboxusercontent.com/u...

taka - hopefully the above link could prove helpful for some additional information if you decide to change to a different iron supplement. It was put together by Helvella who posts on this forum and is also one of the Administrators on Thyroid UK.

We often read on TUK that Ferritin supports the thyroid at around mid-range. As you know all the ranges vary ....

Private Thyroid Testing from Blue Horizon is well used - there are others of course - available through the main website of Thyroid UK.

thyroiduk.org

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Thanks for the links! :-) Mid range would be good to aim for by the sounds of it.

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Vitamin C only helps iron absorption if the iron is in an inorganic form, as with iron sulfate, by forming a chelate which increases its solubility. Taka is taking ferrous fumarate which is already chelated. So taking Vit C isn't going to make any difference.

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This might sound a bit on the odd side BUT when I withdrew dairy from my diet I stopped having ear infections and colds. This is just a thought! I excluded all dairy except butter which is mostly fat and contains no casein which is the problem. I have sustained moderate hearing loss because of a ruptured ear drum so it can be quite serious and worth trying wild ideas just in case they help.

I also follow a gluten free diet which was recommended by my Functional GP who uses nutritional approaches as well as Western medicine.

I would also think more frequent injections will help as some of my symptoms got worse before they improved - and I got some new ones, too. Keep a good written record so you have some hard evidence to present to the Dr. Good luck!

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Hi Taka ... my personal experience is that if my ferritin levels drop below 50 my symptoms return, especially the brain fog and pins and needle around my mouth/face. Even when my ferritin levels were slightly below the bottom of the range my GP did not treat it. They do not seem to think that low ferritin is vey important???

Obviously iron is a poison and you need to be careful that is why I have the annual thyroid assay done by Blue Horizon which includes Ferritin, folate and B12 also my GP also tests once a year (this is a treat because I am now over 70! Aren t I lucky! ). I think you may find that you need to treat yourself. Good luck.

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If the GP says no, I'll take ferrous fumerate if I can get hold of it and monitor myself but I'd far prefer it if they monitored me and tested every so often as it seems I can't absorb it well at all and will shortly be deficient again if it falls much further. I need to have another round of bloods in 2 months to check my low lymphocytes (again!) anyway.

I've not been at the doc / nurse as much as I have in the last year ever before!

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Are you a fan of liver ? 😊 Happy to share my VERY easy pate recipe ....

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Hah, well that would be one way to cease being veggie with a bang, lol! :-D

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Ooops ! - sorry !

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No worries! Thank-you though! :-)

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I take Solgar Gentle Iron Bisclycinate 25mg. This raises my iron levels just as well as taking enormous dosage of ferrous fumerate and not so much unabsorbed iron splashing around in there. Not that keen on taking iron at all but needs must so like to keep it to a minimum.

Initially took 4 a day until my levels went up from 12 to 48 , this took a month and now I only take 25mg daily when my levels drop.

Know what you mean about going to the docs, I m always glad when there is a different receptionist on duty so she doesn t recognise me!

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"Are there other tests for coeliacs?"

Yes. See following links.

coeliac.org.uk/coeliac-dise...

coeliac.org.uk/coeliac-dise...

nhs.uk/Conditions/Coeliac-d...

1) In UK if Coeliac type symptoms continue after a negative test on transglutaminase antibodies then GP could test IgA (an immunoglobulin) as people with Coeliac disease who are IgA deficient do not produce the normal coeliac antibodies and need other tests...see following link

nice.org.uk/guidance/ng20/c...

2) If you have gut issues, have you seen a gastroenterologist? Evidence of Coeliac disease can sometimes be found when an endoscopy is carried out.

Iron tests

Have you had a full panel of iron tests?

labtestsonline.org.uk/under...

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Hi Taka. Well...it's a complicated bag of tricks you have here 😖😄. And I've found out some interesting things, especially while thinking about why your B12 levels drop so quickly.

First, I agree with what others have said about your ferritin and folate being too low.

Martyn Hooper points out that 'low ferritin and low folate can be the cause of symptoms' 'What you need to Know (p270) and B12deficiency.info contains information stating that optimum levels of ferritin and folate are important to get the best effect from injections.

For optimum effect, ferritin needs to be about 100 (or mid-reference range (a tall order but something to aim for) and folate in the top third of the reference range.

Your blood work reflects what the iron disorders institute describe as iron deficency without anaemia (i.e. haemoglobin and haemocrit are normal and the MCV is low - but not low enough to demonstrate anaemia). This may be why your GP assumes that your ferritin level is okay - because there is no apparent sign of anaemia in your blood work. And we all know how much GP's know about optimal ferritin levels 😖.

But...you are still iron deficient...that ferritin level is too low (serum iron and transferrin saturation are also towards the bottom of the reference ranges). Your TIBC may be towards the upper end of the scale because the body is trying to maximise use of the little iron available (low serum iron, transferrin saturation and ferritin).

Perhaps your GP would prescribe Iron supplements and monitor bloods (full iron panel etc.)? But it's worrying that your GP thinks a ferritin level of 24 is okay. No wonder you feel rough.

Next, I've been thinking about the inability to get B12 levels up to where you'd expect after B12 injections. Discovered some interesting things:

Apparently, low serum folate causes more B12 to be excreted in the urine. Here's a link for more information:

link.springer.com/article/1... (Low Folate Levels Cause More B12 To Be Excreted)

And...low folate levels cause B12 analogues (inactive B12) to increase, and active B12 to decrease. Here's a link for that:

ncbi.nlm.nih.gov/pubmed/722... (Low Folate Levels Increase Inactive B12 and Decrease Active B12)

So, two possible reasons for your super B12 excreting capacity.

Also - it's been said here before that different people excrete B12 at different rates, so you may be one of these people who have super efficient kidneys....but who knows but...

If you consider the three things together, it might begin to shed light on the retaining B12 issue. But that's just a thought....

And just wondering....when you were diagnosed, did you have neurological symtpoms...and if so, did you have the every other day until no further improvement regime?

It's difficult to know what symtpoms are due to what problem 'cause there's so much cross-over but it sounds like you need more B12 injections...perhaps more than the six weekly you're planning to ask for. The Stichting Tekort document in the following link states that 'a high serum B12 level does not mean that symptoms are treated effectively...so your low levels of B12 should be something that your GP wants to address...(I expect you can see where this is going 😄)...

The same document states that symptoms should be used as guidelines when deciding on the frequency of injections...

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

Given your consistently low B12 and the fact that you are highly symptomatic, perhap your GP would consider putting you on the neurological regime of injections to see if effects improvement? (Certainly can't harm you and may do some good).

Thinking about what else you can ask your GP to do:

As others have suggested, thyroid antibodies (TPO Tg) to check for autoimmune thyroiditis (Hashimoto's)....autoimmune disease come in clusters and having one means the likelihood of others. Don't know if it would make any difference to your thyroid meds but the thyroid forum can give good advice on that.

A thought - it's all too easy for us deficients to assume that everything going symtpom wise is down to co-factors, ferritin levels, insufficient B12 injections, thyroid issues...and onwards ad infinitum...

But it's not always so...so it's always a good idea to ask GP to investigate and rule out other potential underlying health conditions (they should want to do this anyway. A couple of things spring to mind:

You could ask your GP to do a full antibody screen to see if anything else is occurring in the autoimmune department (it was for me). Not diagnostic but if any positve results it would indicate that further investigations are necessary. It's a routine screening test and it would not be unreasonable to ask for it.

Same goes for inflammatory markers (CPR and ESR). If raised, further investigations needed.

Any gastric problems (absorption issues aside)? Have you been referred to a gastroenterologist? Usual for people with PA to have an endoscopy / biopsies etc. Also may be able to advise on absorption issues.

Also been thinking about the issue of inferior iron uptake. Here's some information from the iron disorders organisation:

Decreased intake or absorption

of iron

Decreased intake or absorption can occur in diets that do not include heme iron, the iron in meat and shellfish. Heme iron is absorbed more efficiently than non-heme iron found in plants and dietary supplements. Other nutrients, however, such as vitamins C and B12, folate or zinc can facilitate sufficient non-heme iron absorption. Consuming certain foods and medications can interfere with the absorption of iron. These include dairy products, coffee, tea, chocolate, eggs, and fiber. Medication that inhibit iron absorption include antacids, proton pump inhibitors (to treat acid reflux) or calcium supplements. Diseases conditions can also limit iron absorption; this can happen as a result of insufficient stomach acid, lack of intrinsic factor (hormone needed to absorb vitamin B12), celiac disease, inflammatory conditions such as Crohn’s disease, and in autoimmune diseases and hormone imbalances.

Incidentally, very good on all thing iron. Here's the link:

irondisorders.org

Based on what they say, looks like vitamin C and zinc may help (I've read elsewhere that B6 is also important - but no more than the RDA as it can cause peripheral neuropathy if taken in excess (sort, exact done escapes me at the moment).

A good vitamin B complex is also recommended for B12 deficients.

Anyway Taka...that me just about out of ideas. I've probably only talked about stuff' you've already thought about but you never know...something might be useful 😄.

Good luck with your GP on Monday...and (ha ha) post again and let us know how it goes...'cause Admin's are people to don't you know 😄😄😄😄.

Take care 👍

Oh and....have you been tested for heliobactor pylori? Very common in PA, B12 deficency and other autoimmune disorders.

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Thanks Sleepybunny and Foggyme!

A gastro referral may be an idea as I have GI issues (though not too badly most of the time). Not had a h. pylori test though was suspected of having an ulcer in the mid 90s. Was prescribed galvison by a grumpy doctor and never went back about it again.

They tried to test ESR in my 1st set of bloods (that lead to PA diagnosis) but it came back insufficient as not enough blood was collected for that.

Didn't have neuro issues when diagnosed with PA other than maybe forgetfulness which frankly I put down to feeling exhausted all the time. Did have balance problems a few years ago but this was put down to a foot issue and the 2 consequent surgeries.

I feel sorry for GP1 tomorrow. Lol! Hope he is in a kindly mood!

Thanks everyone! :-D

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