Losing weight

Hello I am worried about my husband who was diagnosed in December 2014. In the last 6 months he has lost a lot of weight. He was size 36 trousers and XL, he is now in size 30 and small. He has no appetite and is always tired. He has 2 injections a week as trying to help overcome tiredness lethargy. He thinks he looks good which he does but I am scared!!!

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  • Hi Alan,

    Are you in UK?

    Have you thought about contacting the PAS (Pernicious Anaemia Society)?

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    B12 info

    Some info may not apply if you're not in UK.

    b12deficiency.info/

    b12d.org

    Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    book "Could It Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

    evidence.nhs.uk/formulary/b...

    bmj.com/content/349/bmj.g5226

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

    I am not a medic just someone who has struggled to get a diagnosis.

  • Hi Alanhogan. Hello and welcome. I'm sorry that your husband is having a rough time...and that you're so worried about him. All of us 'deficients' know how difficult it is for family and friends to see us when we're sometimes unwell and struggling, so I can appreciate how difficult this must be for you sometimes....and why your worried and scared.

    When people are diagnosed with PA and/or B12 deficency, they are often prescribed injections with little or no explanation about the condition, no follow up care, and no referral for any ongoing troublesome symptoms. I've no idea if this happened to your husband but it does sound a bit as if you might be struggling on alone.

    So..I think it might help if I can just give you a few ideas about what, in general terms, is needed for us fellow suffers to get and remain healthy, together with some questions you. Ight like to raise with your GP. Might just give you some ideas of things to do to help your husband (some may be relevant, some not 😄).

    I note that you say your husband 'looks good' but you also say that he's suffering from loss of appetite, tiredness and lethargy...so, although he looks good - sounds as if he doesn't feel very good. And if he's still loosing weight, then at some point that may become an issue.

    The first thing I'd suggest is printing of the B12 deficency checklist and look through it to see if your husband has any more symptoms of B12 deficiency. This is particularly important if he has neurological symptoms. You might find that he has symptoms that he didn't know were symptoms (many do). And maybe (like me) he has symptoms that he never talks about - either because he's had them so long he thinks they're normal - or he doesn't want to trouble anybody with them. (I'll post some links below - a symptom checklist will be in those links).

    I understand he has two B12 injections a week, but some people find that even this is not sufficient to alleviate symptoms and get and keep well. It would be a good idea to keep a symptom log so that he can monitor if symptoms are re-emerging before the next injection is due. If so, it's likely that he may need even more frequent injections. If this is the case, you can use your symptoms log as 'evidence' to try and persuade your GP to give more frequent injections. The key to treatment and good health is....always....treat the symptoms 😄. Not many GP's know this.

    Note: processing B12 uses up potassium very quickly so when taking frequent doses GP should keep an eye on potassium levels as these can get quite low. Not a good idea to take potassium supplements unless under direct medical supervision - both too much and too little can be dangerous, and levels are quite finely balanced in the body 😉. Best to eat potassium rich diet - lots of advice on the Internet.

    So...some other tips (in no particular order)...

    People with PA nearly always have absorption problems, which can lead to other vitamin deficencies - which can be one cause of the symptoms you describe. Iron deficiency anaemia, vitamin D and folate are common culprits - and all can make you feel very ill. Folate and vitamin B12 work together so if your husband's folate levels are low, his body will not be able to utilise B12 properly - and he will suffer the symptoms of both folate and B12 deficiency...even though he has two injections a week.

    Ask your GP to test ferritin (one of the markers for iron deficency), folate and vitamin D levels (it would be usual for these to be monitored periodically in anyone who has PA, so it would be appropriate to ask, especially if these are not being done). It would also be useful to do a FBC (full blood count) - this can also indicate the presence of anaemia and folate deficiencies etc.

    A note about blood tests: GPs often say these are normal when they're not. Bumping along the bottom of the reference range (or indeed the top) is not good enough for people with PA / B12 deficiency. Most GP's don't know that. If you want to get copies of any blood results (It's your legal right to have these) and post them, together with the reference ranges, we can help with interpretation ( always better to put up a new post when there is new information or new question).

    The loss of appetite and weight loss (and perhaps any other gastric symptoms) is something that your GP should want to investigate. Has your husband ever had an endoscopy / stomach biopsies - generally done as routine for anybody who has gastric problems associated with PA. worth asking about in view of your husbands symptoms. Have investigations been undertaken to rule out inflammatory bowel conditions (coleliac and Crohn's disease etc.).

    Your GP may like to test something called inflammatory markers (CRP and ESR). If these are raised it would indicate that some kind of inflammatory process is occurring, and that further investigations are necessary.

    Also - people with autoimmune conditions (and PA is an autoimmune condition) often suffer from heliobactor pylori, a bacterial infection of the stomach which can cause (amongst other things) nausea, loss of appetite, weight loss.. Your GP can do a breath test to check for this...and if present, it can be eradicated with triple dose antibiotic therapy (I've had this three times in the last seven years).

    About autoimmune conditions - these tend to come in clusters - once you have one (I.e. PA) it's likely (but not certain) that others could develop, and you might like to think about asking your GP to run an antibody screen to check that there are no other underlying health conditions (not suggesting that this is the case, but worth checking - because something has changed - and if nothing is found, it will,put your. Ind st rest). An antibody screen would not diagnose another condition but if the result is raised, it would indicate that further investigations (by a rheumatologist) are necessary.

    People with PA and/or B12 deficency often develop problems with the thyroid, which may become either under active (hypothyroidism) or overactive (hyperthyroidism)...and some develop the thyroid autoimmune condition Hashimoto's thyroiditis. Has your husband had his thyroid tested? Most GP's will only test something called TSH - this is not accurate enough to give true thyroid status. It might be a good idea to ask your GP to rule out an underlying thyroid condition. Ask her/him to consider testing TSH, FT3, FT4 and the thyroid antibodies anti-TPO and anti-Tg.

    PA and B12 deficiency are quite complex conditions and there are many associated things that can impact on the road to good health. I've tried to touch on some of the main ones above (and probably left out a lot too 🙃). I'm not suggesting that your husband does have other underlying health conditions - just that its best practice to rule this out, especially in view of his weight loss and symptoms.

    And like all of us, you might just be thinking the worse - but - the worst is always - always - the last option, not the first. So please try not to worry too much. The symptoms you describe often go hand in hand with PA, the B12 deficiency it causes, the other associated deficencies due to absorption problems....and the simple fact that it's difficult to have an appetite when feeling ill, worn out, and tired.

    Really just wanted to give you a few ideas that you might like to explore with your GP - which I think you probably should, because something has changed...and there might be some fairly simple things (folate, iron, vitamin D) that can be done to help your husband feel better.

    I've no idea how much information you have about PA so I'm going to,post some links below which outline some of the 'basics' - lots of links but don't worry, most of them are only one page long. Worth having a read - might give you more ideas about what's going on. But please excuse me if you've seen this information already 😄.

    Finally...good luck, really,hope,your husband begins to feel better soon, let us know how it goes, and post again if you need anymore advice or support.

    Here's the links:

    b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

    evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)(British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

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

    stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)t

    stichtingb12tekort.nl/weten.... (B12 and Intrinsic Factor)

    👍

  • Thankyou so much for your reply I will look into all the information you have sent. Thanks again for your help

  • No problem. Good luck to you both 😄

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