Chronic tiredness
Posted , 7 users are following.
I was diagnosed with pernicious anaemia a few years ago and have b12 injections every 12 weeks. I am 30 years old and am currently in my 1st year of an adult nursing degree. I'm struggling or should say struggle continuesly with chronic tiredness, however my doctor doesn't seem to listen to me! This is very frustrating. I'm really feeling down at the moment due to the tiredness as I'm struggling to get through my day. Also as you can't see tiredness I feel people think I'm making it up, which is upsetting to say the least. The GP keeps saying my bloods are 'normal' however it isn't normal for me to keep feeling like this. Any advice would be much appreciated, many thanks in advance.
1 like, 31 replies
suzanne57663 nikita51304
Posted
HI nikita51304, I feel so bad for all the trouble you have had with treatment for PA, the treatment with sublinguals is not something that's used in the US, because PA is a digestion situation, anything you take through the mouth does no good ,must be intermucual, although I have had PA for 20 plus I can only speak to my treatment, I give myself injections every 5 to 7 days , because as you get older you absorb less. I have been where you are with injections once a month or so , but they just didn't work any longer, so I found out injections closer work. My Drs. All agree that it's just something I'll need to do. Here in US PA is rare, but since all my family is Western and Northern European , I have inherited the DNA to have PA. My Drs. is British. He has helped me unstand how much human DNA and how much that effects our health. I wish you the best , Suzanne
kelly09968 suzanne57663
Posted
Hi, Suzanne
I totally get what you are saying, yes injections are the best method! But as Clive says injections are not always exactly forthcoming here in the UK. I did have a crazy idea of when I was on holiday in Europe and buying the vials and needles from a pharmacy, because it is totally legal and normal to do this in Europe, and I have been trained to do I.M injections, plus I'm a bit of a tough Cookie. I did do it in the end, and I did give myself 1 injection, all I can say is NEVER EVER AGAIN! So that left the options of rejoin the cycle of pleading with the GP to be allowed to have more regular injections or to supplement.
I read somewhere that with sublingual lozenges you take in about 1% of the B12, but the effects are far less than that because of how the B12 is processed and absorbed by the bodies tissues. The lozenges I buy are imported from the USA, I have to say for me they work, as my blood test results can testify to that, but it may not work for everyone, plus you need a good folic acid. I might be wrong but in the USA are a lot of foods fortified with folic acid? As far as I know in the UK for some reason we don't seem to fortify many foods.
:-) Kelly
suzanne57663 kelly09968
Posted
Hi Kelly , lm so glad you found something that works for you, or at least seems to work . I've never heard about folic acid being added to US food. So many of us are very concerned about anything added to food. Sublingual lozenges have never been offered or mentioned. PA is such a fickle disease some have symptoms others don't . I was almost blind in my left eye when I was diagnosed . PA caused my brain to think I had a tumor is I was left with Puesdo Tumor Cribri . ( pressure builds up ) I don't want a shunt so I walk to use up excess spinal fluid. Keeps me busy !! Have a great day Suzanne
nikita51304 kelly09968
Posted
Where can I purchase these sublingual lozenges? Sorry to sound silly but I've never herd of them and I'm at my wits end so will try anything xx
kelly09968 nikita51304
Posted
Hi again, I want to correct I something I said earlier. I actually started my nursing degree in September 2012, and finally gave up on the whole degree in the late spring of 2014. So I guess I'm still quite up to date about what the universitys exspect from nursing students and how they view health issues. Unfortunately sometimes you can be in a catch 22 because if you say something it's not always looked on sympathetically! But you are suffering, so you maybe able to negotiate a shorter placement, whilst you sort yourself out, and then make up the missing practice hours in the summer. And as a lot of people have said supplementing is a option!
Sorry if I have sounded so negative, but I'm sure I just was very unfortunate, and I probably made things a lot harder for myself, because I didn't really say how bad things were, until I reached crisis point, by which point there wasn't much change of undoing the damage to my course/career and to get my health back on track.
If you have read my post to Clive (he's a lovely gent, who's full of info) you will see that I get the whole 'making it up' bit and I believe you that you are not making it up! As other people of said have your ferritin and folate levels looked at as well as your B12 levels, you don't know what they migh reveal!
Good luck & all the best!
Kelly
nikita51304
Posted
So went to the doctors today and they are having none of it! I am so frustrated by this, my doctor seems to think the nice guidelines do not exist!! 😡
kelly09968 nikita51304
Posted
Oh dear! You have been really unfortunate for your doctor to be difficult, rather than just ignorent or just miss informed. This is hopefully where Clive may have some ideas on how to deal with difficult health professionals. But in the meantime supplements may be the best option for you, have a look on the other conversations and you will find the various supplements people use (if you ask I will tell you what I use) but what you have to bare in mind is that as soon as you start taking supplements any subsequent blood tests will be skewed and the supplements may not work for you. The other thing is (I apologise if you have formally diagnosed) if you have formally been diagnosed with PA you should have better treatment and be taken more seriously by your doctor, although all people with B12 deficiencies should be taken seriously, it's just that in a doctor's world problematic PA normally rings alarm bells! And unfortunately if you are B12 deficient it doesn't seem to ring the same alarm bells in a doctor's world.
Just keep on persevering!
Good luck
Kelly
marion29181 nikita51304
Posted
If you join the Pernicious Anaemia Society they may be able to intervene on your behalf with your GP surgery. I'm not saying this always works, but if they are really not listening, and you are taking all the other vitamins you need to help absorption. You need someone to "fight your corner" for you.
nikita51304 kelly09968
Posted
kelly09968 nikita51304
Posted
You really are not getting much in the way of care or compassion from your doctor. The moderator's won't allow me to put exact details of my supplements in a post, but here's the details I can put: I buy my supplements from one of the main buying sites in the UK. The B12 I take is Methyl B12 5000mcg cherry flavour lozenges, and you just let them desolve under your tounge and I take methyl folate 400mcg , apparently the methyl types are better absorbed. All I can say is although expensive this combination seems to work for me.
Keep on at your Doctor, near the time when you are due for your injection to test your B12 and folate levels then you will know if you are wasting your money, but be warned because your doctor is not being very helpful and they discover you are taking supplements and if your levels turn out to be okay the injections maybe withdrawn, so Marion idea of getting support from the PA society is worth a go!
Good luck!
Kelly
clivealive nikita51304
Posted
I wish you well