Sorry..this is a moan

[julsz]

My first post, and it's a moan!! I am so tired of feeling so tired and being very restricted with how I can do the things I want/need to do. I don't let on to family about how I am, and don't want to. Fortunately living on my own makes this easier, and one can argue I can at least rest when I need to without being under pressure to get meals etc. A faceless rant helps get it off my chest!! Thank you.

[misty14]

Hi julsz

It's a really hard illness to live with so rant away as your amongst people who understand. Have you been checked for thyroid, anaemia?. These can add extra tiredness making it hard. Hope you like the forum . X

[julsz in reply to misty14]

Hi Misty14

It was great to get your reply...thank you. Moral support goes a long way😊

I've been on cyanocobalamin for a couple of years now, but recent blood tests at my doctor's came back indicating anaemia, despite taking them. Back to my consultant in a couple of weeks, so hopefully they can sort something out!

Thanks again, and yes, I think the forum is very good. X

[misty14 in reply to julsz]

Hi julsz

Good luck for your consultant visit in a couple of weeks!. Hope you get sorted. Fatigue is so hard to live with!. I've got anemia problems too. Not easy. Let us know how you get on. X

[julsz]

Thank you ☺

[Foggyme]

Hi Julz. I so know how you feel because it's just the same for me 😖. I was diagnosed with B12 deficency six years ago and have recently been diagnosed with (as yet) undiagnosed undifferentiated connective tissue disease - awaiting commencement of treatment on immunosuppressant.

I've picked up on the fact that you've been taking cyanocobalamin for a couple of years and that recent blood tests show that you are now anaemic.

So...a couple of thoughts (and a few questions along the way 😄)...

When you saw anaemia - did you doctor say macrocytic anaemia (where large red blood cells are present) - if so, it's likely that you may have B12 deficency and / or folate deficency.

If your doctor said microcytic anaemia (where small red blood cells are present) - it's likely that you have iron deficency anaemia - which can also 'mask' macrocytic anaemia (you can have both together). Incidentally, this makes it harder for doctors to spot the macrocytic anaemia associated with B12 and/or folate deficency because doctors assume that you can't have it, because your red blood cells are small (because they expect to see large ones).

The next thing to say is that if you have one autoimmune condition, then you're more likely to get another - because they seem to come along in clusters. So...if you have previously been diagnosed with B12 deficency (I assume this because of the cyanocobalamin your are on) then it's possible that this may be caused by pernicious anaemia - another autoimmune condition (pernicious anaemia is a condition that causes B12 deficiency).

I should note that B12 deficency can also have other causes - but irrespective of that, the treatment for both B12 deficency and pernicious anaemia is the same - vitamin B12.

The majority of cases of B12 deficency are caused by absorption issues, rather than dietary causes (if the aneamia you speak of is an iron deficency anaemia, this may also be caused by an absorption problem - and co-exist with a B12 absorption problem - and perhaps other as yet unidentified vitamin deficiencies - all of which can make you feel very ill indeed.

And here's the thing - B12 tablets (cyanocobalamin or other form of B12) are not effective when absorption problems (with or without PA) are present. If you do have an absorption problem, your B12 will eventually, inevitably, run out...and you will suffer the symptoms of B12 deficency. I suspect that this may be happening to you (based on your anaemia problem which it looks like you're saying is linked to the cyanocobalamin tablets).

If you're in the UK, the cyanocobalamin tablets licenced for sale here are 50mcg - and this is nowhere near enough if you do indeed have an absorption problem - and this is not the treatment set out in guidelines for anyone with an absorption problem (or possibly PA).

If you are not in the UK, some other places licence 1000my cyanocobalamin tablets for the treatment of B12 deficency - but although a lot higher dose, these are still not effective for many (most) people with absorption problems or PA.

So...and certainly if you are in the UK - the treatment for B12 deficency is injections of B12.

So...why say all this to you...well...it's possible that you are feeling so ill because you have the symtpoms of B12 deficency (and perhaps iron and other deficencies too). Many people don't realise how many symptoms this can cause and it's even more difficult because there are lots of cross-over symptoms between B12 deficency and other autoimmune conditions, thyroid conditions, and others.

I'm surprised that your doctor is not taking steps to investigate and treat the cause of your anaemia - if it's the sort of anaemia associated with B12 deficency, it should be treated immediately - especially if you have neurological symptoms.

Can Imsuggest that you log on the the pernicious anaemia society (PAS) forum here on HU. To the right of the page when you log on (or at the bottom of the page if using a phone) you'll find something called Pinned Posts. In the second one down, you'll find a symptoms list which outlines some (but not all) of the symptoms of B12 deficiency. Think it would really be worth looking at the list to see if you 'fit' the symptom profile.

If you do...put a post of that website and we can give you more advice and information about diagnostic and treatment protocols...plus lots of 'myth busting' information it would be useful for,you to know...since many GP's (and consultants too) know little about B12 deficency and...more importantly...it's treatment.

We can also advise on what blood tests to ask for and help,with interpretation if,you post blood test results (along with the reference ranges)....since GP's often say things are normal...when they're not.

If you do post on the PAS forum, it would be useful if you say a little about what medical conditions you have, if,you have been diagnosed with B12 deficency previously, what your serum B12 levels were - with reference ranges, what your GP thought the cause was, what your current symptoms are, any blood test results (you can get these from your GP surgery) and what your doctor is currently planning to do for you. Sounds like a lot to ask but it all give clues that will help,you to get the best advice, if you need it.

And this has been a very long post simply to say I'm sorry that you feel so ill. And incidentally, apart from the dragging endless exhausting feel like you're dying tiredness, another symptom of B12 deficency is the desire to be alone and away from noise, bright lights, conversation, people...well...almost everything (perhaps something you can recognise😖).

Anyway...please do think about peeping in to the PAS forum - I do suspect that B12 deficency may be another factor that certainly worth exploring - and anything's worth exploring if it leads to getting rid of such nasty horrible symptoms.

I'll look out to see if you do put up a post and perhaps could give better advice when/if you're able to give more details. And there are lots of lovely forum members who will pop along to support and help, if needed.

Please take very good care...and just ignore me if I've completely misunderstood you post and talked a lot of meaningless nonsense 😄

[julsz in reply to Foggyme]

Hi Foggyme, and thank you....so much helpful information. I really appreciate it, although I'm sorry to read about your own situation.

My gp wants me to go back for another blood test so I guess she's still investigating what the cause is. But I'm seeing my consultant in a couple of weeks so I'm hoping it will get sorted then.

I will check out your advice, and certainly feel more informed as to what questions I should be asking the medics. I've been a bit 'head in the sand' about the whole lupus thing but really need to understand what's going on with my body and what could help things more effectively.

Thank you. And I hope your symptoms settle down with the new medication.

[Foggyme in reply to julsz]

Thanks Julz...and good luck 👍

[happysally72]

Whilst it's lovely to be able to talk to others whom totally understand how you are feeling, it's important to let your family in too. They would most likely be mortified to know you are suffering so badly and they've not been able to give you emotional support, or do a bit of shopping or housework for you. There is a leaflet available (from Lupus U.K. I think, which can be ordered or downloaded), which is for families and loved ones, to help them understand our illness and what they can do to help. It is of course difficult for friends & family, knowing their loved one is unwell & suffering but nowhere as bad as it is for us, living with it every day. It does actually help to share this for them and know they understand what you are going through. You have to think of your own emotional wellbeing. I try not to whinge too much to mine but I know that if I'm having a particularly bad day and I do, then they can support me and also they understand if I'm not up to going to a planned meal etc.

Forums are a great deal of support but it really helps to be able to talk about it and have the odd 'whinge' to your family & friends too 😉

Xxxxx

[julsz in reply to happysally72]

Thank you... and I understand what you mean. The trouble is my girls (who are actually adults now!) live in the US and feel guilty and worry as it is. Whilst they do their best they would only worry more if I let them know, and the rest of my family live over 3 hours drive away. I know if things got really bad I would turn to them though, and I have brilliant friends who would help too if I asked them. The forum has proved to be the support I needed on this occasion and am grateful to everyone who has responded. I know I'm not alone 😊x

[julsz in reply to julsz]

Thank you Paul. I shall follow your link. And yes, I am really finding the help and support great on the website.😊

[Paul_Howard Partner LUPUS UK]

Hi julsz ,

Welcome to the community, I hope that you find it a useful source of information and support. Please continue to share here with other people who understand.

We published an article on our blog last year about managing fatigue which has lots of helpful tips; it may be worth a read. You can find it at lupusuk.org.uk/managing-fat...