Have been having B12 injections since 6 February at the surgery (after a long battle with GP, letter writing + enclosures of highlighted evidence from guidelines and support from PAS and members of forum = so thank you all once more) and there has been much improvement.
When GP said the guidelines state only 1 injection every 3 months after loading doses I told her that in case of neurological damage injections should be given till no further improvement was noticed. Also told her the cost of B12 injection is low (28p) she said it was the nurse's time that was a problem. Suggested I would like to be taught to self inject IM by nurse if she would agree. She agreed and am being taught by nurse now.
I also insisted GP should explain to me (not for the 1st time but to no avail, except "it's what could be expected with my health issues"!!) what an overproduction of RBCs meant. So she finally told me my RBCs are of smaller size therefore microcytic cells. No other explanation nor help, and the consultation came to an end. Must pursue conversation about this problem and would therefore appreciate further sensible advice from members of the forum before I see GP again, next Thursday (16/3). Clearly does this suggest microcytic anaemia? or what else? Although gp vehemently denied in the past 2 months I was anaemic. So how do I navigate this situation please? Clearly I need to understand what is happening in order to prevent further problems down the line. What investigations should GP recommend regarding this problem?
I requested a form for further FBC as well as Thyroid function tests. I noticed my level of RBCs has gone up a little more since my last results of 16 December 2016, (above range before and now) as well as Mean Cell Volume and Mean Cell Haemoglobin levels having gone further down (both below range before and now).
These are my latest results:
Total white blood count: 6.50 10*9/L (4-10)
Red blood count: 5.30 10*12/L (3.8-4.8) Above Range mentioned by lab.
Haemoglobin concentration: 141 g/L (120-150)
Haematocrit: 0.424 (0.36- 0.46)
Mean cell volume: 80 fl (83-101) Below Range mentioned by lab.
Mean cell haemoglobin level: 26.6 pg (27-32) Below Range mentioned by lab.
Mean cell haemoglobin concentration: 333 g/L (315-345)
Percentage nucleated red blood cells: not detected
Nucleated red blood cell count: not detected
THYROID FUNCTION TEST:
THS: 0.85 miu/L (0.3-5.5)
Free T4: 23.1 pmol/L (12.0-22.0) Above Range mentioned by lab
Free triiodothyroine: 3.8 pmol/L (3.1-6.8)
Thyroid peroxydase antibody: 18 ku/L (< 34.0)
I went to the lab first thing in the morning (about 8 am), fasted, only drank water and no T4 taken for 24 hours.
I take T4 100 mcg and 0.75 mcg on alternate days. I had a partial thyroidectomy (but only a very small part of thyroid remained) in 1980 and post operation it was disclosed I had papillary carcinoadenoma, had a 4 nodules goitre).
Thank you for reading my post and awaiting your comments.
Best wishes to all.
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JGBH
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My nurses "love me" JGBH as I am "given" a 10 minute slot for my injections and I'm in and out in five which gives them a chance to put their feet up, have a coffee and catch up with their paperwork and I've been having B12 jabs every four weeks for 45 years.
Yes, my ferritin level was tested in December 2016: 43 ug/L (30-400)
and naturally gp said that was fine! Did point out it was rather close to bottom of range and since I had been feeling so ill and exhausted for so long this should be taken into consideration... but NO luck. What does one have to do to ensure a GP does a good job in helping patients?
I believe you have been diagnosed with gastritis. Am seeing gastroenterologist on Monday evening next week, so would you advise me on how to obtain the best of that consultation. Will discuss poor absorption of nutrients, long use of PPIs for 25 years!).
Phew! 925 years on PPIs. They must be doing some good! ❗️
Are you sure you need the PPIs? If you have PA then you almost certainly have Autoimmune Metaplastic Gastric Atrophy. That means the cells that make stomach acid are killed off by your immune system - so you will have low stomach acid. And the symptoms of low acid are remarkably similar to those of his acid.
If you've had a positive test for anti-iF or anti-GPC (Gastric Parietal Cell) antibodies then lack of stomach acid is quite likely.
If you haven't then it's it's likely that the PPIs are causing low B12 (acid is needed to release dietary B12 from the proteins).
Are you due for a gastroscopy? That would be a good indicator of AMGA.
Hi fbirder. Goodness, what a typo error.... 25 years is the correct number and that is already too long a time to be left on PPIs. Had been going for checks at gastro department for many years (have not for past 4 years though). Unfortunately the gastro I was under "disappeared" to London doing research and teaching and was rarely at the local hospital, which meant I have been seeing too many registrars.. and very little was done.
Am seeing this specific consultant (he's very good) on Monday. It is a consultation only and I hope he then will order several investigations in order for me to be able to stop using PPIs in a safe and responsible manner and find out the state of my poor stomach!! I do have a healthy diet but it seems obvious that most of nutrients are not being absorbed and that is the main cause of B12 deficiency... and probably why I have an overproduction of RBCs as they are struggling to bind with enough Haem allowing them to pick up and deliver oxygen to all my cells. I was fainting often. Does that sound like a reasonable explanation to you?
So I should aim for consultant to organise a gastroscopy? what else would you suggest? And what are the prospect post gartritis diagnosis? How are you now?
In December 2016 the Parietal cell autoantibody level was NEGATIVE... but we know the test is not reliable, giving false negative.
The problem sits with the fact GP has been unwilling to give me any diagnosis at all, never mind PA... although she's finally agreed, under much pressure (I would rather that had not been the case) to prescribe B12 injections. It has taken me 2 years during which my neurological symptoms got worse and my general health has deteriorated quite rapidly.
I have been prescribed PPIs because of much GERD (too many nasty drugs to help me with RA since 1980s...) and the burning pain in oesophagus was incredible. These were not stopped because of risk of oesophageal cancer. Do hope gastro should be able to sort this difficult problem.
So what tests should I definitely insist on getting if consultant does not suggest them? I do hope he will...
Many thanks for any more suggestions. I really need to find the root cause of my health problems so as to be able to enjoy a better quality of life.
Actually, the anti-GPC test only gives false negatives in about 20% of those with PA. the reason it isn't recommended is because it gives a false positive in around 10% of non-PA suffers, even more in older people.
As for other tests, all I can really talk about is from my own experience. Ask for a gastric test. If you have low stomach acid then your gastrin will be high.
When food enters the stomach it stimulates gastrin production. Gastrin makes the GPCs produce acid. Acid lowers the stomach pH. Low stomach pH switches off gastrin production.
Without GPCs no acid is produced, so gastrin production is not switched off.
High gastrin isn't a sure-fire sign of. Low stomach acid, but. The gastroenterologist would need to find an alternative explanation.
Your T3 level is low and T4 high which mean you may have a conversion problem. Or it may mean that being low in B12 (and also maybe folate, Vit D, Ferritin?) is stopping conversion. May be adding to your general unwell being?
Thank you for your suggestions. It does look like a conversion problem... Will not be easy to sort out with my GP's mindset... she'd rather do nothing (with the exception of giving antidepressants!), so you can imagine the battles I have been having for 2 years now. It should not be like that.
My grandson had low MCV and MCH... he was diagnosed with microcytic anaemia due to low iron. I think you really need to have ferritin and folic acid tested if not done previously. Also I m not an expert but I think your T3 is a bit low, you might like to post on Thyroid UK. Glad to hear you are feeling better.
Thanks for reply. My ferritin and folate levels were tested in December 2016 and although low within the range, GP insisted they were fine are within range! So if anyone has a suggestion as how to make stubborn GP think rationally then I would be very grateful indeed.
Was your grandson's Ferritin level below the range level given by the lab? Just asking as you said he was diagnosed with microcytic anaemia; also was his red blood cells production above range?
I can see I will have problems regarding my T3... as GP has already warned me that she cannot prescribe T3.... so no idea of what to do.
Hi... yes his ferritin was only just below range and can t remember about the RBC. He has not had any treatment yet but has at least been referred to a paediatrician.
It would be useful for you to get printout of your last ferritin/folate test results from the receptionist at your surgery. GPs often say they are okay when they are not I m sorry to say ..... they are really quite crucial to thyroid function.
I am currently trying to get my ferritin/folate/zinc/selenium levels up to optimal range then I will have Blue Horizon blood tests to see how my thyroid is functioning and then I may have to think about supplementing T3 if there is no improvement in my conversion rate... its all quite worrying. I have had great help and advice from Thyroid UK . Hope you manage to figure it all out and decide what to do.
Do hope your grandson will see a paediatrician very soon and get some help so that he can get better.
I always request my blood test results and am always told GP's approval is required! Indeed they are not happy about us patients seeing that what they call "normal" is often not the case or so close to the bottom of range. It means help with treatment is required.... and not really prepared to help. However I feel confident that if any member of their family, or themselves, were feeling as poorly as some of us do, they would not hesitate to have all sorts of tests done in order to find root cause of the problems. Always the same: a rule for us and a rule for them. Sorry, but I do feel very strongly about this mindset and resistance of GPs to ignore patients' lack of well-being.
Sorry but don't think can help on tests beyond looking into the possibility of a potential iron deficiency. Have you had any tests to establish why your B12 was low - ie what absorption problem was going on?
Good that you are being allowed to self inject as required.
Of course GP said my B12 was not low, similar with all other values, said I did not have anaemia, usual scenario .... So do not know the cause of my B12 deficiency but would like to know. How can I find out? Any idea would be truly appreciated. Is it PA? How does one find out?
GP not making any kind of diagnosis, not really bothered... I had to push all the way for the past 2 years for her to accept prescription of B12 injections, fight all the way like so many other people on this forum.
Am seeing gastroenterologist on Monday 13/3, so what important questions would you suggest I ask him? Have a good idea but do appreciate some people on this forum know and understand a great deal more than myself.
Maybe you were supplementing at the time of the B12 test above - either with a B12 supp or a B complex tablet. Both could skew the result and inflate the figure.
The other point to consider is the B12 in the blood is composed of both bound and unbound B12 and only one can reach the cells where it is needed - so only about 20% of your result is available for the transfer to the cells.
As you are also Hypo it is possible you have LOW stomach acid - which makes the break down of proteins in the stomach more difficult. Good acid levels are needed to extract the B12 molecules from the protein. You could supplement with something like Betaine HCL .... or ACV with the Mother - well diluted.
Your Ferritin needs to be higher - are you treating it ? Also I have read that Folate needs to be around mid-range. Good levels needed as it works with the B12 in the body.
I was not supplementing at all before the tests done in December 2016. So what tests would be required to find out about levels of unbound and bound B12?
Feel pretty sure I have low stomach acid level since I have been on PPIs for 25 years... the trouble I have a hiatus hernia which give me GERD... and much acid flowing into oesophagus over a very long period of time is dangerous in that one may get oesophageal cancer (i have pain)... so it's not a simple problem and can't risk doing something like that: I need the gastro's understanding and support in order to stop using PPIs. Do hope I will have a better idea by Monday night.
You have really had quite a journey to date - or series of battles might be more accurate!
I don't have much to add to what has already been said, but one question has crossed my mind from this thread and your earlier posts and replies - Have you actually ever been tested for Intrinsic Factor Anti-bodies?
I see that you have tested negative for Gastric Parietal Cell Antibodies - but nothing re IF. ( I now see fbirder also asked this question further up.)
Mind you doing the IF test may be a double-edged sword.
A positive result would be great of course and let you know the cause of your absorption problems.
On the other hand, a negative result may well be used against you and be used to stop or reduce your injections. - despite the high percentages of false negatives (50%).
A real gamble.
The long period of PPIs would seem likely to be a big factor.
Having suffered from reflux and gastritis for most of last year I understand the situation. PPI for eight months did nothing and I weaned myself off and I started 2 tablespoons of apple cider vinegar (with the mother) in water a day, plus lemon or lime juice in my other water drinks; a tbsp or so of raw sauerkraut; and probiotic yougurt. Stomach was much better within a week or two and no reflux. Now stable as long as I keep up the ACV daily. Less consistent with the other things. BUT don't use ACV if there is any hint of ulcer. I was a real skeptic about ACV until I tried it.
Thank you for your reply and suggestions. Much appreciated.
I have had a hiatus hernia for a very long time and had to take some many nasty drugs over a very long period of time so suffer very badly with GERD. As you indicated it may not be a good idea to start weaning myself off PPIs by using ACV at the moment since
I do have a taste of blood in my mouth on a daily basis, so best not to risk adding further complication in the case of possibility of ulcer. Will discuss this with gastro on Monday and I do hope he will be able to help me... keeping fingers crossed.
Sorry to hear re the taste of blood. Definitely not the time to try something new. Hopefully you will make some progress tomorrow. Good luck and let us know.
TSH is low-normal, FT4 mildly over range and FT3 low in range which indicates you are a poor converter of T4 to T3. If you are symptomatic you might feel a little better if Liothyronine (T3) was added to a reduced dose of Levothyroxine to raise your FT3. Due to the extortionate cost of Mercury Pharma T3 it is increasingly difficult for patients to be prescribed T3 and most CCGs insist that T3 should only be prescribed on recommendation of a NHS endocrinologist. If you can't get T3 prescribed on NHS you could write a post on TUK asking members to PM you sources for European T3.
Thanks for your interpretation of test results Clutter. GP warned me she could not prescribe T3... when I asked her to order thyroid panel tests.... already preempting the fact she would not/could not prescribe it!
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