after my appointment yesterday

after my appointment yesterday

I was the same when I got back home.crying again all evening cos I know my body and what symptoms I have and the dr s wont recognize them.i have just woken up at 2am with crying and thoughts in my head,why do I have all these symptoms and no one listens.i feel my stomach now and it is rock hard and my neck is tight and my face so swollen .I am supposed to be meeting someone fro coffee in town today .how can i go out when I look like I do?if my dr were me would he want to look like this.go back and see him again today or wait til 14th?why don't they see its more than just bloods?woke to find my Annie sleeping next to me-bless her she is always there for me.

my face is a lot more swollen than this eyelids are so swollen my eyes look half shut and the r side of my face is so nose has always been big and now it is so swollen (bone growth each side)I don't want to go out and theres nothing can do to disguise it.

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43 Replies

  • hi not in person but I did in the letter I wrote to him ,posted yesterday so he should have it today.

  • hi there very sad for you, push on and dont let the doctors put you off, i have spent 16 months trying to get diagnosed so i know what you are experiencing, you look very tired like me. wishing you well.

  • thank s been nearly 3 years .i would so love to have more than 4/5 hours broken sleep.

  • Do not cry, crying make things worse. Be

    Persistent. Bless you. XX

  • I am trying(to be persistent).its tough when they don't accept what you tell them.take you seriously.i wonder what he would say If it was his wife who had he knows me best you would think they support you with regards to consultants

  • So sorry to hear. I am afraid I don't have anything medically helpful to say, but just felt for you. Hope you get some good replies that help.

  • I have photographs of me looking like that. I was on t3 and t4. I had forgotten about them until I saw your pic. I haven't looked like that for several years now. Not since I started taking NDT. Hmmmm.

  • maybe that's what I gp wont prescribe any thyroid meds as he wont recognize symptoms.have bought T3 btu the only day I took half a tablet felt 10 times worse.i am like this but its not cos of thyroid meds-lupus/sjogrens.(nasal sores and bleeds as well)

  • I was going to ask if you had been tested for lupus. That's the first thing I thought of when I saw your picture. I'm sorry you are feeling so poorly. It must be dreadful that the doctors aren't listening when you are clearly very ill. I hope someone starts listening to you soon. You shouldn't be left to suffer in this way!

    (Gentle hugs)

    Carolyn x

  • i woke this morning after another nightmare(recurring one) .my dog Annie by my side.pelvic pain and my other dog not moving from the sofa.cant complain to nhs direct -no longer exist.the ombudsman wont help unless all avenues exhausted with gp contacted PALS again as this seems my only option.the practice manager is a member of CGG,so dont think that will help-contacting them.unless I write to her again not to complain about my gp specifically btu to get recognized/symptoms accepted.etc.need to take me seriously

  • I do feel for you, it sounds like this has been going on for so long that your anxiety about your health is contributing to your symptoms. Try a little essential oil of lavender on your pillow at night (must be the real stuff) to help you relax. Lack of sleep can certainly give you extra symptoms, I always get a puffy face when I haven't slept well..

    From your previous posts it sounds like your GP appointments haven't been very productive, maybe make it simpler for them and concentrate on the main symptoms that impact your life. Don't make suggestions of what you think it could be, just ask them to help you feel well. I think you may have overwhelmed them with so many symptoms and so many possible causes to the point that they have 'tuned out'.

    Hope things pick up for you soon.

  • hello lunamoona.have done this in the letter I sent yesterday.they no longer rule out all original gp in kent did everything he could to get a diagnosis-xrays scans referrals they say oh your bloods are in range thewres nothing wrong.

  • Hi Hun,

    I agree with denajade you look exhausted I also get this puffiness in my face & like you have taken photo' think you look bad how I wish you could see me.

    You can only discuss one thing in the doctors surgery these days......that's just great when we have so many things going on.........they all seem to be quick on pushing us onto antidepressants.......I wont to scream I'm not depressed i'm ill. :-(

    Have you tried stopping gluten in your diet ? If not give it a helped me with the swelling & bloated stomach.

    What illnesses have you had diagnosed..........if any ? I'm hypothyroid but have other illness

    going on, this is common with autoimmune patients.

    I have cried buckets in the past but all that does is add to the stress, it's nice to know your Annie is comforting you.

    You are entitled to ask for a second opinion..........if your Gps is like mine it did not stop at the second they just don't seem to wont to get to the route cause of the problem.

    You mention bone growth in your nose it's strange but I have this in my neck on the collar bone..........I wonder why.

    Try the gluten free diet it wont cure all but might help with the swelling making you feel more comfortable, try to drink more waterto flush you system. Jillymo X

  • exactly what I told him when he arrange dto see a counsellor and I told him that is not what I need.i need you to listen to me and your support and having to wait 10 months for an appointment doesn't help when you need someone on the day.i have cut out bread even tho it is only the rare slice of toast.tested fro gluten and test was ok- not allergic to it.diagnosed raynauds and fibromyalgia in 2005.since 2011 when symtpoms worse no diagnoses-just told what things are not.the other gp suggested it might be meds(imipramine)so reduced by half- made no difference -told my gp this on Monday and he said reduce it to 1 a night.knwo its not meds -when forget to tale imipramine in past at night -cant sleep.

    bone growth -have it in collar bone too-do oyu also have protruding ribs?

    regarding drinks-I drink water 4 X a day with meds and fruit juices /squash other tea and odd cup of coffee.

  • I also have Fibro Myalgia that can make you foggy in the head, as for my ribs it is hard to say I have so much fat around them these days.

    I swell out from under my boobs & now resemble a pregnant penguin, it's so uncomfortable.

    You may not be allergic to bread but your stomach could be sensitive to it.

    I hate going to the doctors these days it's such hard work battling with time you go ask what he thinks is the reason behind your low Vit D.

    Did you say you have had thyroid surgery ? If the answer is yes ask if it's possible your Para-thyroid glands have been damaged & that is the reason behind the low calcium & Vit D..........dont forget to ring the surgery to ask for a print out of your blood results. Jillymo

  • .can you not feel them?my swelling has moved up to under my boobs too btu I can still feel my ribs sticking out/into me especially when I lie on my left side-brings on cough.ive had gallbladder surgery last august and that's when thyroid probs started.other member s said their thyroid probs began after having gallbladder removed.

  • No I cant say I can feel them but as I said " i'm well covered these days. "

    I cant say why you can feel them, i am very aware of the lumps on my collar bones.

    Hope your feeling better for sharing your problems, I find it helps to talk to other's that understand.

    Take care..........Jillymo x

  • nose bone growth -lupus?know nasal sores are.can gluten free foods be gotten on prescription does anyone know?

  • Sorry that you are so poorly Anbuna, I too recognized myself in your photo and that was 30 years ago. I didn't know anything about thyroid in those days. I think the non-gluten approach would help you. Keep on at your G.P., never give up there is always an answer.

    Good luck!

  • thank you

  • Hi Anbuma - sorry you're feeling so bad. I must admit I look very much like you do at the moment - and I feel awful. I'm trying to get a diagnosis too - and some treatment. My reasonably good GP - who would listen - has now retired so there aren't any interested doctors at my surgery now.

    I've just made an appointment to see Dr P privately - you'll know about him from other posts here, I'm sure. I'm really hoping he can help me self-treat and get some kind of life back again. Are you in a position to go private? If you don't already have it, get the list of GPs and endos from Louise Warvill. Dr P's contact details are on there. I'm feeling he's my only hope now. I hope you can find a doctor to help you too.

  • hi sorry you gp has retired.mineis th ebest gp inthe practice(was in the beginning-other s have retired .one or two new ones who are rubbish and only one other of the original gps)im sort of scared mine might say he wont have me on his list for persisting and trying to get answers/ not in a position to go private.

  • this pic was taken a couple of weeks ago .

  • yes I did.

  • Your eyes and nose look like mine did. I presume you have had blood tests (I am sorry as you have probably posted all this before but my memory is shocking still!). My story is very different but I just kept going back saying me again and this is not right. One consultant told me your blood tests are normal so you are well now. I replied so why do I not feel it? Why am I so breathless that I have had to rest three times between the hospital entrance and outpatients dept? He had no answer and planned to discharge me because the blood result were normal. I realise I am fortunate to have a very open minded and helpful GP though so it must be hard to be stuck at that stage. I guess you have tried different GPs and all I can say is don't give up. I found it helpful to take somebody with me to the appointments as it helps for someone else to listen particularly when you are upset and sometimes the Drs seem to listen more if somebody else is there too. Keep banging on. Its your life and health, the Dr can go home and doesn't have to live with it.

  • your consultant is just like my gp.i think mybe goback to A&E if stomach pains are chronic-they are enough to stop me in my tracks and pelvic pain is story is all in my profile.

  • Have just had a quick look at your profile. Have you had vitamin D tested? Just a thought but my rib pain really improved when that was corrected. Also my daughter who is only 29 had very low levels of vitamin D and rib pain, swollen face and a host of other symptoms which have vastly improved with increased levels. Sometimes it is hard to sort out symptoms as they are all so similar. I am still struggling but some have improved with correcting vit D calcium and vit B12. I did print off the info on thyroid UK and filled in the symptoms list and took to my GP though as I have no thyroid they were perhaps more willing to believe me - though not all! Hope things improve for you soon.

  • thank you have the thyroid and lupus checklist fro next appointment btbu did include list of symptoms in with my letter to him.

  • I looked similar last yr still have eyelids hanging down was hypothyroid not taking thyroxine as my levels have been fine.Last year I had episodes of crying didn't know Why I was crying.Is that a permanent red rash on your face? I had that too one dr thought I had lupus but test clear.6mths later holistic Gp diagnosed VitaminB12 deficiency with genetic mutation my level 200 meant to be >450 ,liver & gut inflammation ,low cortisol levels.I am on gluten free found helps with inflamed thyroiditis & swollen belly.I do hope u find some one who listens .Maybe a naturopath could help.I am still having health issues.

  • I am glad I am not alone and that others do experience the same as me .the rash is permanent and altho gp prescribed a lotion to use -does nothing except moisten the skin.i also have rashes on my hands and pink areas at base of toe and finger d blemishes /scars on my arms which turn vivid red in the sunlight.these are symptoms of lupus.had no specific tests fro lupus-don't believe there is one?

  • Yes, there are some tests for lupus. They tested me for it but decided I didn't have it. I think one is a blood test - anti-nuclear antibodies (ANAs) or something like that? If you test positive for ANAs they do some other tests to confirm one way or the other. I tested positive to start with - but then negative, so they said "no". I'm still not convinced of that, to be honest. It was a rheumatologist I saw for lupus tests. Would your GP refer you to a rheumatologist to have this checked?

  • I ddi have ANA s done some time ago btu only as routine.rheumatologist never ddi blood tests when i saw him.i asked gp on Monday if I could see a different rheumy-no.surely not just one rheumatologist in the whole of the county?

  • Even though you don't have a diagnosis, it might be worth trying dairy free as well to see if that helps. It really helped my discomfort, bloating etc. I hope you feel better soon.

  • the only time I have actually felt "bloated" is after eating mash-made with butter and milk.dr only said to avoid mash and cauliflower .so rarely eat potatoes now.

    I have tested for milk allergy-no problem there.the only meal I really have is breakfast then I am full and never feel hungry so don't eat much else.

  • tahnks for everyones replies.hope I answered all of them ok.really appreciate everyones support.we need each other especially if drs don't give us the time of day

  • thank you ill try.if i get 5 hours solid sleep it will be nice.but havign nightmares since January doesn't help.dr recognizes that im having them but not that thyroid is /could be the cause

  • hi there .slept from 11.30 til 5-woke havign nightmares-then back to sleep til 7.took dogs out -walk to town,along river and thru castle park -bus home.barely walk legs heavy and pelvic pain more than go back to bed.need some caffeine now.river views and wildlife were worth it in a way.

  • don't know what it is.seen gynae when at A&E last scans normal but couldn't have smear,internal -dr said she couldnt find anything,some people have said scans not 100% reliable.all I know is its disabling,persistent and that OC causes pelvic pain.gynae said scans normal so then it must be bowels-btu as i told him no problem with bowels

    its a lovely place to live,semi rural surrounded by farms and countryside.even winters are mild compared to kent where I came from.

  • Hi anbuma, Its appauling the docs these days wont listen, when i walk into a doctors surgery I get judged for being overweight, I can hardly walk anymore and I used to walk for miles, but they just tell me to lose weight, I've been big since a child and never eat more than anyone else, just been diagnosed with Hypothyroid and on 50mgs Levothyroxine, any way enough of me, keep fighting girl, we are the ones whoknow our bodies, dont cry.

  • dr recorded me as obese based on BMI btu wouldnt accept that weight gain all abdominal -scales don't identify where weight gain is in one place.rheumy told me to lose weight btu wouldnt accept that I don't eat cakes biscuits puddings or snacks-not done so fro several years and did nto acknowledge when i told him it was all abdominal and nothing to do with my diet or me.

  • Dont worry Anburna, we are all in the same boat. I had a major confrontation with my GP yesterday, and I will see the day of him legally. I earnestly ask everyone to sign the e[etition and to publiise this on facebook and everywhere you can. I have told my GP that I am horrified at the way pharmaceuticaql companies are behaving and that I intend to use my legal knowledge to lobbyparliament for stringent changes in the law. He had better listen for one way or the othert I will take action. My heart goes out to all the people on this site who are struggling to get the right medication and are being ignored.

    Collectively we have a verypowerful voice so take heart and I wish you good luck and good health.

  • I think it s not right that blood labs can dictate to gps re gp told me that the lab wouldn't do T3 or T4 if TSH normal(in range)?need all to get a true picture?

    not only right medication -also fro gps to listen to their patients symptoms and not dismiss them.

  • in so much pain today.completely exhausted after dog walk-had to get bus home and back to bed slept fro 3 hours.stomach and back achy all over -especially neck-tightness and achy at sides. .pelvic pain there all day and pressure on stomach/ribs.thinks will be a short dog walk tomorrow.A&E?

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