How is everyone's weight ?

[kiraminx53]

This maybe seem a strange one to ask, but how is everyone weight, when I was younger I always had a constant battle to stay slim haha to fit into nice clothes etc. Now over the last 3/4 years my weight has plummeted I don't know whether it has to do with the Pernicious Anemia my gut problems the FND now I'm just over 7stone in weight and it sticks there, I don't diet at all now. Obviously there is some things I don't eat because of my gut problems, but my weight still stays really low, anyone else noticed their weight dropping like this, curious to know xxx

[thinkin]

Hi,

Well I do go up and down. Last year I lost a stone without trying and then it finds me again. It doesn't seem to correlate with how much I'm eating either. I have generally stayed the same weight, which is quite an achievement as I've been mostly house bound for nearly 5 years and have an under active thyroid.

More likely to be your gut problems. Sounds like you need investigation to make sure, blood glucose and thyroid function etc. There are other things that you may not be absorbing enough like vitamin B6 which when lacking can reek havoc on your brain. Do you have a dietician for your gut issues? Have you had blood tests for other vitamins?

If you have trouble with one B vitamin you will have problems with them all as they work together as a complex. If you have thyroid antibodies with your pernicious anaemia then there's a good chance you have problems absorbing enough B6 too as this is known to go with it. If you have migraines B2 is recommended on the FND Hope website and this helps B6 utilisation.

Even though you may have "normal" levels there are vitamins that we tend to need in more of - therapeutic doses rather than preventative or maintenance. Have a peruse of the FND Hope website. You'll need extra help with gut issues getting the right amount in the right form for your body to absorb so ask for help.

It may not cure your FND, but it should improve things to have the right micronutrients, vitamins and minerals. You have to attack this from all angles. Sleep, pacing, other medical issues etc.

Good luck and ask for help via the patient advocacy on the FND website if you are having problems getting the healthcare you need. xx

[kiraminx53 in reply to thinkin]

Thanks, I was just wondering, everytime I go to the Doctors to get my thyroid checked they mention my weight, and talk about dieticians, pain clinics etc, but nothing every comes of this stuff. Had umpteen blood tests for this that and the other, they don't seem very forthcoming with imformation, everything seems to come to me second hand. Like referrals for this and that, memory clinics etc, info seems to get passed along, but I don't know what the hell is happening half the time. I know I have a lot of gut problems so it is probably coming from there, but I get nothing from the Dr's, get most of my advice from the Nurse when I see her, she tends to ask what I'm eating etc. what exercise I'm taking so on and so forth. Considering my Thyroid is so low I would have thought my weight would go up, but no it has went the other way. Like yourself, I don't go anywhere, mostly confined to my home, can't really get about unless its with a stick, and then I'm weaving around a lot, only walk to my daughters who is just around the corner from me thankfully. Anytime else my hubby takes me out in the car, which I'm not so keen on as I don't like noise or crowds and get really tired and confused being out. Gone are the days when I used to jump in my own car and drive to work and do my own thing, its bloody awful, xxx

[thinkin in reply to kiraminx53]

Hi,

You are entitled to your medical notes - freedom of information act in the UK - think there's an equivalent in the US too if you're over there.

You need the levels of things, rather than "normal". I was told "normal" for B12 years before I got sick proper even with numb hands and feet on saying that despite the thyroxine it had not improved all I got was a shrug. The result actually said "low recheck in a year" and they never did - I only found that years later at tribunal for PIP. I only found out that vitamin D was low by reading the computer screen when my first (rather useless) neurologist stepped away from the computer. Then he only gave me enough tablets for a month when the lab wanted me to have a course for 3 months. I had to see my GP and ask them to phone the hospital and then I got the extra. They still won't recheck them even when I need them to be above 500 when they've never been as high as that.

It's terrible that they make you fight for everything when you have no concentration and are really, really tired. You need help.

Personally I found the B6 in a high dose (I take 500mg a day in split doses) helped my concentration, mood and co-ordination. I was falling over. Neurologist said I shouldn't be falling as stopping yourself falling is an "unconscious" mechanism. I had other symptoms - chapped, cracked lips and occasionally I used to get sores at the corners of my mouth (cheiilosis). I saw results from that one quite quickly. We are all different though so what helps me may not help you.

I take enough supplements to make me rattle. Lots of B vitamins. It may mean that I have very expensive urine, but at least I've seen noticeable improvements. Looking back before I got sick two things happened close together, my thyroid antibodies went up and I developed gastritis. It was an asthma attack that tipped me over the edge.

I hope you find help. Sounds like you need someone in your corner. xx

[GentleFlower]

Hi Kiraminx

So I don’t know about gut problems but my weight fluctuates drastically when I have nausea, loss of appetite and need serious encouragement to eat as I binge on fruits when I’m like this as I sleep a lot more (they make me feel less nauseated after a sleep as opposed to food or drink) and I would be bed bound most of the times when it’s been very bad.

I have reached in my last seriously vicious cycle of FND symptoms just above 7st/42/43kgs I believe (slightly above underweight) just over a year ago and couldn’t come back to my normal weight 8 and 1/2 - 55/56kg... now I am almost hitting it but not quite.

I’ve never been big.

I had to go on to taking complan shake which can be found over the counter in Tesco but I was prescribed for nutrients...and I started drinking blue top organic milk... which actually tastes really nice.. as opposed to the normal blue top ( less sucky for me)

Everyone is different but I think FND sufferers are almost like cancer patients, you are eaten away at times loss of hair, all sorts of issues like disease (as the professionals do not refer to it as a disease as such) I looked over my GP’s screen as she pointed it my direction and FND fell under Nervous system disease mmmhhh that’s correct but then the disease part makes it open a whole can of worms. Shouts CONFUSION HERE!

The best advice I could give is to eat whatever you feel like eating even if it means sending your husband or boyfriend or kids or friends to buy a hot dog at the cinema or one off midnight snack at 2am lol crazy example I know, but that’s the sort of thing I do because life is too short and I can’t go there as I am normally house or bed bound sooo what the heck.

I hope it’s not gut issues and it is just the crazy effects of FND that I suffer with too because then you have less to worry about except what you eat to try and gain a little..

You are not alone on drastic weight loss I bet there are loads of us... I’m kind of glad because it makes it easier for transfers (wrong reasons I know but being bigger just puts on a show and I get embarrassed especially when out getting help with wheelchair transfers etc ) it makes the care job a little easier for those helping hey?

Anyway...Wishing you all the best 😘

[kiraminx53]

Thank you both for your sound advice, yes thinkin I'am in the UK, Scotland to be precise, I did ask for my B12 readouts once and the nurse wrote them down on a bit of paper for me, didn't print them off or anything, stil didn't make any sense to me of course. Sometimes I have a quick look at the screen when I;m at the DR's and ask what something means but not very often, honestly I would love to have a really good look to see what they are saying. Because I know how Doctors can twist stuff, one Doctor that I had years ago, constantly said that I manufactored headaches to get out of going to school and take exams, honestly I was 7 years old, I was getting splitting headaches !!! this I was making up according to him, this went on for years, until I was 17 at least. It was only then when another Dr was with him he had to listen that Migraine was dx, I still get them till this day and now I'm 58 years old. Let me tell you they have been murder at times, totally screwed up my lifestyle, of course...I made them up,,,so much so that my daughter and mum had to get emergency dr out to get me injected with morphine...Lovely to not be believed isn't. Anyway I digress which I'm good at, mind wandering, this I why I want to see what they are saying about symptoms and things, because i feel that they can get hold of the wrong end of the stick at times xxx

[DNE92 Moderator FND Hope UK]

Hi. As you are wanting personal information about yourself you need to do a Subject Access Request under the new Data Protection Act. Go to your GP or Health Board website and they should have a Privacy Notice which should tell you who to address your request to. There is a legal limit for the GP/Health Board to reply.

Cheers

Lou

[kiraminx53]

Thanks Louyse xx