Pernicious Anaemia Society
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Looking for advice

Hello, I started suffering from balance problems and many other symptoms suggestive of low b12 at the start of this year. I am a 7 year breast cancer survivor who was treated by surgery, chemotherapy, radiotherapy and herceptin and have been taking tamoxifen for 7 years. In June after blood tests I was told I had low vitamin levels and to take a multivitamin. Despite attempts to find out what vitamins the response I got was "all of them". I did, one providing 100% of all vitamins. In July I saw a neurologist who said there were no problems and b12 was fine. 10 days ago I had repeat tests and got some figures out of the health assistant:

June - b12 167, ferritin 17

July - b12 224

November - b12 207, ferritin 14

Guidelines where I am are b12 180 and ferritin 10.

I am hypothyroid and apparently in June my thyroid levels were low, 10 days ago they were fine and I'm told my b12 and ferritin are normal. My diet is good and my symptoms have improved somewhat, though I'm not right.

Am I right in thinking that if my b12 improved with a multivitamin then it's not pa? I intend to try and see a GP (very diificult) what should I be asking? I just want to feel normal.

Thank you for reading.

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are you still taking the multi-vitamin?

Although its hard to be certain without knowing the units of measurement and the ranges it looks as if the changes in your B12 levels are quite low and could well be within noise level ... so no evidence of falling B12 levels which would be expected if you had a B12 absorption problem (the body tends to regulate B12 levels quite easily by releasing reserves from the liver - though this relies upon the same mechanism that you use to absorb B12 from your food - so if there is an absorption problem you would expect to see levels falling over time - PA would have a significant impact and reduce your ability to absorb B12 so only a small fraction of the B12 in the multivitamin would be absorbed so that wouldn't have much if any impact on the downward trend.

Unfortunately balance problems can be caused by a large number of conditions and a large number of mineral and vitamin deficiencies so if you had a large number of vitamin deficiencies then it might not necessarily be B12 that is the problem. There is also a considerable overlap with hypothyroidism.

This article mentions that tamoxifen can interfere with the accuracy of thyroid tests so may be worth querying that i

webmd.com/drugs/2/drug-4497...

your results above don't actually include the ferritin result for November- you can edit your post by clicking on the down arrow next to the follow button.

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Thank you for your reply. I stopped taking the mutivitamins for a week before the test. I started again as the palpitations an racing heart were really bothering me. Since starting the multivitamin I have stopped losing weight. Ferritin in November was 14, so similar to June. Thank you for the tamoxifen link, which I'll look at when I'm less tired.

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I have a friend who is a breast cancer survivor of many years and took Tamoxifen for the 5 years and was then told she would need it for another 5 years. She suspected she was feeling unwell due to the Tamoxifen. Her research took her to an interesting link which she sent me - something about there not being any research to support the 10 year plan and so she stopped it and has experienced improved health. Have just tried to find the link and like so many that do not follow mainstream thoughts it has disappeared - sadly.

I also have other survivors that struggled initially - and yes chemo et al stresses the thyroid and it becomes unbalanced. Low T3 is linked to breast cancer - maybe due to the iodine connection. Sorry I am not a medic - just someone that has worked out how to become well. yes a couple of my pals had thyroid issues afterwards leading to Hypothyroidism/

Also VitD has its place in treatment and recovery as discovered by Carole Baggerly who created the website below - another survivor ....

grassrootshealth.net

From reading I believe that testing for individual vitamins and minerals and then treating is far better than taking a Mulit-vit - which will not give you enough of some and on increasing - too much of another. Also check those fillers :-)

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Tamoxifen can cause symptoms that make it unpleasant to continue. However, I suspect the link has disappeared as there is good evidence to suggest that 10 years or even more may improve prognosis post chemo. I took it for five years but then stopped as at my age I believed it was less important for me. For younger patients I think it must be a carefully considered decision to stop treatment.

My main problem with it was dreadful hot flushes about thirty times a day and a feeling of exhaustion.

The exhaustion can often be a B12 deficiency symptom and there is some suggestion that the hot flushes may be caused by B 12 deficiency, perhaps secondary to damage to the autonomic nervous system, or possibly as a central neurological problem influenced by lack of B12.

Try B12 before ditching the tamoxifen. B12certainly helped my hot flushes which were always associated with a feeling of being drained of all energy.

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Thank you. I suffered from very frequent hot flushes too and they are so debilitating. Interestingly on the multivitamin they have improved which agrees with what you say. The unbalancedness I'm suffering from at the moment is not the same feeling I get during a hot flush. I'm due to switch to letrozole next year, I believe the side effects are worse than those of tamoxifen.

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The unbalanced feeling could be neurological and therefore a clinical trial of B12 would do no harm. If it doesn't help further investigation is required.

I personally wouldn't worry about having taken multivitamins. I have taken them for years and my B12 level was low in the normal range. It won't interfere with an intrinsic factor antibody test which in any case is quite likely to be normal even if you do have B12 deficiency.

Anastrazole still causes hot flushes and joint pains seem to be an issue. I have friends who've been on it for years and not found it too unpleasant. It is thought to be more effective in protecting against recurrence than tamoxifen. I'll cross my fingers that it suits you and that the balance problem and other issues are soon sorted.

There is definitely life after breast cancer and you should enjoy it to the full!

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Thank you. I certainly enjoy life, it's more precious now. I got back to hill walking and scrambling, though due to balance problems and tiredness I've had to cut back, not to mention that it really doesn't do my husband's nerves any good to see me teetering over big drops!

I was hoping with the switch that I'd get rid of the hot flushes, but it seems not!

I shall ask about the intrinsic factor antibody test.

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I'm so glad you're getting back to your normal life and enthusiasms. I'm in the US now and you can walk into a B12 shop in the Mall and get injections given by a doctor or pills. High dose pills are available everywhere because they are generally very safe. If B12 doesn't cure your balance issues get your GP to refer you for investigations. You don't want to miss out on anything that life can offer now you've got over the big cancer hurdle.

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That's exactly my feelings, it would be a shame to survive the cancer and only live half a life. Wish I could walk into a shop here or somewhere and get an injection.

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If all else fails Amazon does 1000mcg tablets at a very reasonable price. Approximately 10% is absorbed irrespective of intrinsic factor or stomach acid deficiency.

In the presence of neurological symptoms, which you may well have then injections are medically indicated to correct the deficiency as rapidly and effectively as possible before any nerve damage becomes irreversible.. it would be good to suggest this to your GP. In my view It would be clinically negligente not to treat adequately in that situation.

In the absence of neurological symptoms then some studies have shown 1000mcgs a day to be an effective supplement.

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Good old Amazon! Would a spray be any better than tablets? Rea a lot about them but can't figure out if they are better or not.

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I don't seem to have had many problems with tamoxifen - apart from the hot flushes! I always feel that as long as I take it, I'll be fine. It was the chemo and radiotherapy which wiped out my thyroid, though it was borderline before. Wish I'd never started the multivitamins before getting to the root of things since now all results are skewed. Thanks for your advice.

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Life expectancy after correct treatment is almost the same as it was before, unless you are in an unlucky minority. Best to regard yourself as cured and try not to worry about it. Obviously you should seek medical advice if you get symptoms that could be related.

I take the view that I never thought about getting breast cancer until it sneaked up when I wasn't looking. Worrying about it creates unnecessary stress and won't stop it but possibly even makes it more likely. Far better to adopt your precancer attitude and put it well and truly behind you.

Good luck!

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Hi janefraser

Firstly, I'm pleased to hear you're a 'survivor'. Congratulations I am also a 'survivor', of 5 yrs, but I only required local surgery and radiotherapy, plus Tamoxifen/Anastrozole but was able to stop these meds after only 3 yrs due to significant side effects.

I'm B12 deficient due to taking Metformin and Ranitidine, so presumably not absorbing.

If you are in the UK, you are entitled to know your blood results and, in fact, the best way is to ask for a print-out each time you have new tests. If you can access your repeat prescriptions on line (just ask receptionist) then also ask that you have access to all your details, including blood results etc. Then you can just look on line, or print them off yourself.

Unfortunately, doctors just say 'everything is normal' even when the results are NOT normal, especially when it comes to B12.

Hope this helps

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Thank you, pleased to hear you are also a survivor. I didn't realise I could get a print out of my results or access them, I'll follow that up. Sometimes I am just too weary to continue fighting to get information.

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The B Vits in your tablets would skew the blood tests for B12 sadly it takes months of stopping them to get the real low in your system I believe. Sorry you are still suffering.

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Just wish I'd never started taking them before I got answers.

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I also had breast cancer, 6 months chemo and tamoxifen for five years. During my chemo I was on lansoprazole for 6 months because of severe reflux caused by the chemo which makes the stomach and oesphagus lining very thin (atrophic). This causes a deficiency of stomach acid and reduced B12 absprbtion.

I was absolutely exhausted during chemo and couldn't walk more than 100yards or upstairs without having to stop.

I'm now fairly certain that B12 deficiency was the cause of this and depleted my stores of B12. I struggled through and my thyroid function was low but just within the normal range. I had an excellent endocrinologist ( now retired) who thoroughly investigated my thyroid function. He explained that inflammatory substances called cytokines were circulating as a result of the chemo which inhibited the utilisation of thyroxine. He also explained that for many patients the normal range is just that and for some people to feel normal the thyroid hormone needs to be at the upper range of normal.

Thyroid supplementation so that my levels are high has helped a lot but I have since discovered that my B12 level is in the low normal range. However, neurological symptoms can occur with levels of up to around 450 and in Japan the normal range starts at 500!

I was feeling completely exhausted, not tired but utterly unable to carry on - a bit like during chemo. Because of my family history I insisted on B12 supplementation but experienced the usual brick wall arrogance of the medical profession - and I myself am a doctor!

All I can say is that my neuro symptoms have not recovered and I suspect are permanent, but my debilitating exhaustion is a thing of the past.

Best Practice guidelines state that doctors should treat the symptoms and not the precise level of B12 and that in case of doubt a therapeutic trial is indicated.

My answer is very long but I think parallels your experience. I hope it may help you when you see your doctor. It is an incredibly complex and poorly understood clinical scenario and my own belief as a doctor, having read extensively on the subject, is that many cancer patients are suffering unnecessarily when many of their symptoms during and post chemo could be improved by considering thyroid function and B12 levels.

With B12 supplements there is really no downside to treatment as it is very safe, with excess levels being passed out in urine. Thyroid supplements are also safe but should be monitored by a doctor who is prepared to take a similar view to my endocrinologist.

As an aside exhaustion is shown in studies to be the most troubling symptom caused by chemo and yet it is the one that doctors disregard most frequently advising you to keep up your exercise levels, which is the very thing you cannot manage!

Good luck! I am 10 years post diagnosis and feel fine now. I really hope your troubling symptoms improve and that you will have a complete recovery and a long and healthy future.

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Always encouraging to hear of long term survivors! If a doctor isn't listened to, what hope do I have?!!! It's exactly what I feel like sometimes - as if I've had a dose of chemotherapy. I've managed to get a GP appointment for 2 weeks time and will certainly be doing my homework before I go. I don't know whether I qualify for having a family history of pa or not. In the maternal line my great uncle certainly had it. My mother suffered repeated heart attacks and they told us there was nothing they could do for her. Then a junior doctor diagnosed her as having very low iron. gave her blood transfusions and she recovered. But I don't remember any mention of pernicious anaemia. I think my grandmother may have been anaemic too. The odd thing is that I have spells when my balance is ok for short spells. My husband can tell by the way I walk if my balance is ok or not.

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When you see how persistent people have to be to get a correct diagnosis and treatment for PA it's not surprising many patients have no family history. My grandmother was paralysed with subacute combined degeneration of the cord so it was absolutely definite and we have now discovered that my sister, my brother, my niece, my two sons and my granddaughter all have an issue. I suspect my mother may have had it also and her sister almost certainly did. Even so my GP was very reluctant to diagnose me or treat me according to the guidelines. Don't let it beat you and don't let it make your life a misery.

None of my family has had what I would consider good diagnosis or treatment but we've all taken issues into our own hands. I'm not going to worry about suffering the same fate as my grandmother before diagnosis, I'm going to take a sensible well researched approach to self treatment and have advised all my family to do the same. No point beating your head on a brick wall forever, you just get a sore head!

Symptoms from B12 deficiency can be a bit variable initially so the balance issue could well be intermittent. If it's unsteadiness in your feet rather than a dizzy feeling it could be ataxia which is often related to B12 deficiency. The fact that your husband notices by how you walk is suggestive of this. If he could attend the GP with you he could add his two pennorth and you're much less likely to get the run around especially if the doctor is male!

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My sister has some symptoms and my niece. My husband is insisting on coming with me this time and yes, the doctor is male! The problem is we keep losing GPs from our practice and I then have to start again with another one.

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Regard it as character building for you and essentíal further education for the succession of doctors at your practice.

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:-) Not convinced that it will be successful (based on past experience with lymphoedema and repeated cellulitis), but it won't be for want of me trying!

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Thank you to everyone for taking the time to answer my query, it makes me feel a bit better that I'm not alone. I've got a lot of homework to do before I see my GP in two weeks time. I get so tired of being told that I'm lucky to be alive after the cancer (I certainly know that and I'm very thankful that I'm still here) and that I shouldn't complain.

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We are all lucky to be alive and should appreciate every day because none of us knows what the future holds. B12 deficiency is only an issue if it's not diagnosed and treated. Since the treatment is very safe and very effective and can be self administered safely if necessary you shouldn't stress about it too much. It's frustrating that the medical profession are so often ignorant, arrogant or both when diagnosing and treating it, but compared to facing up to cancer where you definitely can't self treat, it's a breeze. Don't let it ruin your life! Deal with it, complain if you feel like it and then take back control of your own life.

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I will!

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