Misdiagnosed

[sophiestry]

I have all the symptoms of thyroidism I have had borderline tests in the past but now I have been diagnosed with MND despite failing all those tests too. I believe they won't test me for this as their mind set is wrong. I am going to print off the check list of symptoms and show them to everybody who knows me.

[Hidden]

This must be very distressing for you. As well as printing off the symptoms list from the main TUK site, it might be worth you returning to your GP with this information and asking for a full range of thyroid and vitamin tests.

thyroiduk.org.uk/tuk/diagno...

If this doesn't work you could try one of the doctors recommended by TUK and getting some private tests done. We found that we only moved forward with my daughter when we took charge of her health ourselves.

Jane x

[sophiestry in reply to Hidden]

What tests do I need for Hashimoto's hypothyroidism. I have someone coming round here to give me blood tests . I asked for T3 and T4 in the meantime I hope this is right.

[sophiestry in reply to Hidden]

I am having water retention now and constipation too I failed another hypo test last week THS that was

[Hidden in reply to sophiestry]

Did you have just the TSH test done or the other tests on the TUK list as well?

Jane x

[sophiestry in reply to Hidden]

I asked for T3 and T4 and got TSH done only they tested my B12 and failed that too but I have chronic vitamin D deficiency too.

[Hidden in reply to sophiestry]

You should be receiving D3 and B12 replacement then. Have they offered this?

Would you be able to have private tests done for T3 and T4 and see a private doctor as it seems you are not getting the right attention from your GP service?

Jane x

[sophiestry in reply to Hidden]

I am aiming to get those tests done in Spire hospital. They are cheaper than most £69 per test . That's providing I can get there wheelchair bound I am. I am having a vaccine this week for vitamin D.

Thanks for your help with this

[sophiestry]

Thanks Jane for yours I will have a look at the recommended doctors. I had a little argument with mine she said I do not have it. And she did not know why I lost the hair from my arms and legs . And she did not know why my eyebrows and eyelashes have thinned . But she could tell me my head hair was falling cos of ageism. Never heard so much rubbish.

Sophie x

[blackqueen65 in reply to sophiestry]

Have you ever had your adrenals tested, one of the symptoms of addison's disease or adrenal Insufficiency is losing hair from lower legs and has a lot of crossover symptoms with hypothyroidism.

[sophiestry in reply to blackqueen65]

Hi Chaz

No never had any tests for that I will ask for that too thanks

[shaws Administrator]

Hi sophiestry

Welcome to our site. What is MND?

If you have had thyroid gland blood tests, get a copy from your surgery and post them here complete with the ranges.

You are not the first person to be diagnosed with everything but a thyroid gland problem, so she said your hair was disappearing with ageism! It is a symptom of hypo. You have learned that GP's are not well informed when it comes to clinical symptoms and only diagnose by your blood test results.

When you reply to a particular comment, you have to press the blue Reply to this otherwise the person isn't notified.

[flatfeet1 in reply to shaws]

Hi shaws, I think sophiestry must mean Motor neurone disease. Do you think this could be partly or holy due to Vit B12 deficiency ?

[shaws Administrator in reply to flatfeet1]

Thanks flatfeet, I just couldn't think what it means. You may well be right in that many of us are given diagnosis eventually find out aren't correct.

Considering that B12 is such an important vitamin which causes neurological and nerve damage you could well be right.

Have you seen this video. Even the best medical people couldn't diagnose him.

youtube.com/watch?v=BvEizyp...(Not working as expected?)

[flatfeet1 in reply to shaws]

I have seen this before, Great video, couldn't have descibed it better. BTW; MND, what would I do without google search?

[sophiestry in reply to flatfeet1]

I have just noticed this messages thanks for your help.

[sophiestry in reply to flatfeet1]

Thanks flat feet I thinks I will show it to my medical experts.

[flatfeet1 in reply to sophiestry]

Thyroid conditions can make you deficient in Vit B12, it would be a good idea to ask your doc to get you level checked, Hope you get the answers you need.

Best wishes

[sophiestry in reply to flatfeet1]

Thanks flatfeet I will do that straight away. I did have an annual B12 some time ago I have to check it out

[Aurora-auspice]

OMG Sophiestry, I'm so sorry! I fervently hope they"ve got it wrong and thyroid is still the culprit! I am so scared of misdiagnosis because while I'm struggling with tunnel vision of one of my probs the others are deteriorating me and any quality of life even faster ... Does that make any sense. I a, finger crossing and hoping with all my heart everything is ok for you

Much love Aurora xxx

[sophiestry in reply to Aurora-auspice]

Thai you Aurora. I hope and pray you will be okay too xx

[Aurora-auspice]

Xxxxx ooooooo !

[sophiestry in reply to Aurora-auspice]

My quality of life has gone up the swanney I have a fungal infection too and a hospital disease which is attacking my muscles and bones

[cein in reply to sophiestry]

Interesting .. would you mind if I asked you what the hospital disease is thats attacking your bones and muscles.

[sophiestry in reply to cein]

I have all the symptoms of streptococcus. Necrosis Fasccillis

Ver y painful

[sophiestry in reply to cein]

It's affecting my fingers and toes marks on them

[sophiestry in reply to sophiestry]

I don't understand it as I should be dead but I have all the symptoms of it. My blood not getting to my fingertips.

[Aurora-auspice]

Just way things going for me at mo not fun is it! It's just one thing after another! I keep having a wry smile at thought brain, nervous system, circulation, self-esteem, muscles, connective tissue (lungs) interstitial something, pneumonia, constant repetitive urinary tract infections, acute farmers lung, neuropathy, digestive probs, acid reflux, migraines, parotid gland making left side of face blow up like a balloon now and again, and oh of course the weight issue depression diabetes fatigue anxiety palpitations and Pain pain pain, nausea blah blah blah. And believe it or not I believe I coul cope with most of it, I dismiss most of it daily as irrelevant and just dissociate so that I can keep plodding on but REALLY ...... It is never ending I seemed to hit forty and then rot inside out exponentially sounds ridiculous but that's how it's been! I feel if I lost weight it would help but low calorie overseen by nurse to specialist diets balanced healthy eating fat binding drugs to stop absorption and even 800 cals a day under medical supervision I gained weight only ounces but still a gain and I could barely move so exhausted!

I think one of the things that annoys me most is that I'm sure if I could just find a way for my foggy confused mind to identify a healthy balanced diet with regular exercise with blood tests to keep an eye on nutritional imbalance, disease and genetic related damage and inadequacies I'm sure it would be a little better at least but I crave salt use sea salt but still, I have sugar cravings and then like a child get so hyper focused that I forget to eat.

Then I'm way to gullible I read that you can cure cancer with macrobiotic diet in 'you are what you eat' book, then the autism diet for my Aspergers then the blood type diet because archaic genes as part of my genetic make up make me predisposed to inability to break down fats protein but diabetes means carbs will put me in a coma and fat reduces my immunity oh Dear Lord my childhood time in catholic school got me very keen in fasting now my diabetes nurse gets very cross when I've missed a meal!

I'm so so sorry I have no right to moan I am actually very very lucky in many ways but it is all so draining and I was brought up to believe "what goes around comes around' and I tried to be good, do no harm of any kind so what awful stuff have I done to deserve this sort of penance? You know it feels like self-inflicted punishment! But I know a lot of it is out of personal control so I just need to tear myself away from the beliefs, self flagellation and moral conscience I was brought up to honour if my psyche is going to survive this!

You have it so much worse than me it is just awful, unfair and I just think my chest is going to burst. It just isn't fair!

Take care, treat yourself to something really special something you will really enjoy YOU DESERVE IT! A luxury day, experience or item, time with friends a new activity something you've always wanted to do. I am planning to try the same and have signed up to a short course see if I can learn a little about designing then making a garment I have in mind a really nice winter coat! If its is as good in reality as it is in my head I might be able to wear it eventually. Anything to keep thinking forward and positive!

Much love and wishing you the very best

Aurora xxxxooooxxxx

[sophiestry in reply to Aurora-auspice]

Wow! You are having it bad !! I wént to cátholic school too. I have a fungal fat gut and am sick of of imbibing 600 Calories and being told by MND hospital you are holding your weight. NHS put a peg in my gut so I know what goes in there. Grunt grunt grunt me necrosis. Three growths under my tongue I'm heartily sick of NHS

Positive thinking is right good luck with the sewing

Love and wishing you all the best too. xxxxxxxxxx

[Aurora-auspice]

Xxxx fed up yes totally you too! Just need hugs all round but or course I feel I need one but can't let anyone give me hug how pathetic so at home it's i need a hug no don't hug me don't touch me but I need a hug! Don't know what I'd do without the teddy bears, the dog and horses to cuddle! Didn't think 600 cals was possible wonder why I haven't been allowed that yet! Necrosis as well how awful and scary REALLY WISH I could help! Mind you I drive everyone crazy talk too much or can't communicate at all hiding in my "Aspie cave" as Rudy Simone describes it! Those that can put up with the incessant chatter bless them hate me when I do the can't do or say anything in Aspie cave - it's just too diff to understand that even tho really want to can't at those times. Then the Aspie like people who like the relative detachment and infrequent contact can't cope with the incessant chatter stages!

Can't say I blame them I can't cope with the stages either!!!

Are you stuck in hospital at the moment? I hope not or would that be easier? Are you getting lots of help?

Don't want to pry and don't want you to drain energy on my chatter so not a prob if no reply honestly xxxxx

[sophiestry]

I can't talk to anyone about this MND hospital are Gods really. I email my son with new things but he don't even reply. It's not that he doesn't care he would rather believe them I would like to talk about whats happening and cant. I keep asking why hospitals keep putting me in isolation but no one can tell me why. I'm not in hospital at the moment but I will be soon. Going in for more useless tests. And then to a nursing home I think. I spend all day sleeping keep nodding off (hypo) I now realise But my partner can't cope with me. Can't talk so I use my iPad . But I feel resentful he won't believe me when I ticked the boxes on the symptom checker I showed him he said "oh no not t that again" I can't win.