Out in public

Firstly ..hello bloggers and friends on this site. It's been very quiet on here for the last few days so hope you don't mind if I jump in.

I had to go into town today to pick up a prescription because there was no other way to get it and to get Tel a birthday card. It's is only a five minute walk but I got a taxi to the back door of boots..even waiting for the prescription seemed upsetting today. All day I have had the twitching left eyelid and what I call tinnitus..can't think what else to call it...it's like when you come up from underwater with water in you ears, or you have a shell over your ear listening to the sea as a kid..anyone else get this...a symptom that combined with the headache and eye is really quite distracting..and I realised last night it's there all the time.

It's a short walk from Boots to sainsbury..no more than 200 yds max. Well by the time I got there I was exhausted and it felt like my upper body was on fire and my face dripping. Looking round I could see people having, apparently, normal day. The checkout staff seeing that I was distressed and being kind (it happens every week) ask if there i am alright and there is anything they can do..all I can do is smile ruefully,and say no thank you.

Thank God I can get a cab home with one small bag of shopping.

I got indoors and burst into tears because I felt so bloody awful, exhausted burning up and feeling totally crap.

All I could do was flop on the settee and take relief in sleep. I didn't get up till 1pm....went out at 3pm back laid on settee by 4.30pm. I slept for a couple of hours and now though still on the settee, am feeling tired but better than all day.

I just wanted to post this moan cos I know there will be someone out there who understands and can reassure me it's not in my mind. Like I said I've been depressed...and this isn't it. Except that when I was out in public I was upset at seeing all those normal people enjoying life just because I was flooded with thoughts of how far from that I felt myself, and wondering whether I could ever feel normal again.

Anyway as I said I feel a bit better fir now, but what happens today happens every time I leave the house. Someone, I think Donna, said they didn't leave the house for 23 days..anyone else feel like this? I'm not agoraphobic as such but truly if going out makes me feel so I'll, I can't bear to go out and I only feel safe when I am at home and indoors.i rang the hospital today and they have the results but there is no way they will give me them before my appt next week.

Oh well only 1 week till I find out. I am so glad I found you all and Dr Peatfield because if I have to create my own treatment plan I have half a chance of doing it with your support.

31 Replies

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  • Hi Bunny, I'm not qualified to help but gotta say something! I had the twitchy eye thing, Horners maybe,(yes feels like you're winking at folks, nudge nudge say no more) - embarrassing! and ears ringing & deaf too - also the 'fat tongue' slurring? - heard a sad story about this -someone escorted out of shop because they were 'drunk'? yep, I kept indoors avoiding stuff 'cos I felt really spaced out!

    Well, now it's gone... really no bull, and the tremors and the coldness, tiredness, 3 o'clock earthquake. I had an op to remove half thyroid (OK folks you've prob heard this already sorry) and after 2 weeks, back at work (I need money for osteopath) actually can join in with the banter, my wit dares to return! Hope it continues!

    However, boss says he's glad I've got the OK from the doc - what OK? what doc! I was thinking no news is good news but thought I'd better ring 'follow ups' like the needle aspiration result - they've got it on screen but can't tell me!

    grr frustrating or wot? Apparently pre-op say I've got a history of anxiety now to boot! when did that happen?

    I hope this site is like my TOS site and allows occasional ranting! - thanky you muchly Jane x

  • o those words...iv been depressed and this aint it...exactly those words came out of my mouth last time i was at docs.....didnt get me anywhere with him but i no wot u mean....i understand.....its so annoying when ur tryin to say somthin and not only cant think of the damn words but when u finaly do after lookin like a complete idiot...u cant get ur mouth to say them...and then u get the look......whoever u r talkin to either think ur mad or i dont no wot...but im sure u no wot i mean...

    i still get the but ur blood tests r satisfactory...and go and lose some weight ul feel better and last time was the why dont u take up swimming......

    i am exhausted...and even that dosnt say enuf as im sure u no......U R NOT ALONE

  • You will do it Bunny, and the help Dr Peatfield gives is amazing, I understand the going out thing, its very daunting. I get the body on fire thing, and that is exhausting. brain fog is another one i was supposed to ring someone today about making me a homeopathic bottle like one of those bach flower types. i had it written down to ring and still forgot, any yes my gp thinks a lot of this is depression, but its not as i know the difference. Good luck Donna also with your Dr Peatfield appointment. Good luck next week Bunny, i will be thinking about you.

    Best wishes

    Angie x

  • I just found your posts Angie and SallyAnne..normally my email page let's me now but it appears that didn't happen today.

    Out of the blue the Endocrinologist rang today, must have heard that I tried to get the results, and guess what he thinks the results are all normal....exactly what I didn't want to happen. He said he hadn't read my notes yet ( not the guy I saw last time) and when I said I would want the exact figures he quite happily said he'd print them out for me.

    I am so peed off...it's bad isn't it..wanting to be I'll, well not wanting to be ill but have proof in the test results. I guess all I can do is see this guy and see what if anything he can suggest.

    The trouble is so many diseases cause the symptoms I have.. I got so upset thinking people will think this is all in my mind. But I am absolutely bloody certain this is not just depression. It's beginning to look like I am going to have a fight on my hands!!!

  • Hi Bunny, see what he says, and what he thinks you should do now, i know in the book tears behind closed doors by Diana Holmes, she had beeen told her thyroid results were normal and by that time she was really poorly in a wheelchair and when she saw Dr Peatfield he told her it was her thyroid and adrenals. So he goes off the whole thing and not just the results. Dont give up you will get there in the end.

    Best Wishes

    Angie x

  • o bunny....i no how u feel....i havnt managed to get as far as the endo yet cos i cant get passsed my flippin gp.....

    good luck with dr peatfiels and let me no how it goes cos i may be following you on that road soon xxx

  • I know how you feel. Yes I get that strange thing with my ears too - another thing I wouldn't have thought had anything to do with thyroid until someone else mentions it.... I hate going out too - it's got to the point that I feel scared in case i feel ill while i'm out. I can just about cope with the tiredness, but it's things like dizziness and visual disturbances which really upset me. I used to be agoraphobic when I was younger so know how easy it can happen. I force myself to at least walk my dog every day even though sometimes it's a real effort.

  • Thanks everyone. I feel so confused today. I keep saying it's not in my mind, if it's depression then it's a new form of it unlike anything I've ever had before. If I was prepared to be like a Victorian lady, lying on the sofa permanently invalid, and had servants to cosset me Id be quite happy!! But like the rest of us I live in the real world and have to get on with things!!!!

    Sorry I am too tired to even post much today but please stay in touch because the contact with you girls on this site is a) very supportive b)makes me know I am understood c) gives me hope that I might have to fight but there are people rooting for me...

    Have as good a day as you symptoms allow.Sally Anne..it was you whose tsh and ft4 were the same as mine wasn't it. Stay in touch and we can support each other.

  • I'm so relieved not glad that you have it but glad im not the only one. I have been telling the endo that my ears are odd and feel as if im under water or in a plane and they need to be popped and she keeps telling me it's all in my imagination along with the panic attacks and really bad depression. Bunny the same happens to me when I go out on the rare occasion that I do. Now I try to go with a friend and I do my supermarket shop on line That feeling that im going to pass out when im waiting at the checkout coming out in a cold sweat and thinking im going to faint I cant do it it's too scary. And like you the exhaustion is horrendous, the shortness of breath all of it sucks, I had Graves disease and had the Rai treatment and now im Hypo and 100 times worse in a different way I wasn't depressed before and I was a size 8 now I weigh in at 10st 10 never in my life have I ever weighed more then 8 stone it makes you feel so unattractive along with all the other bloody stuff. I put that weight on in 4 months and I promise I hardly eat at all for fear of gaining more weight. I have to say that from all the things I have personal suffered in my life having this is the worst thing because it makes so many things feel wrong in your body and changes your whole way of life. I have just had one of my friends on the phone telling me her daughter had the same situation with her thyroid and since the Rai she has never felt better. I'm really pleased for her but made me cry :( I sympathise with all of you and wish I had a wand that I could wave and make us all well again. Take care everyone x

  • But you've got something really wrong with you!! Terrible isn't ..I am almost jealous of someone with a named proper disease!!! Then I feel guilty...I think of that woman Jane something who had breast cancer and did cycles races and marathons raight till the time she died.

    I've always been large and statuesque but somehow carried it off. Even years ago when I was much younger I weighed much more than anyone could guess...heavy frame I guess. I am now over 20 stone...I do eat but not horrendously, not like anyone would imagine so you can guess how I feel.

    I've hoovered, out the rubbish out and done the dishes...enough today.

    But this ear thing..you aren't imagining ut...it's tinnitus and several of us have it..it does make you feel I'll..spacy, faint , out of contact with surroundings and is often associated with a headache.

    Thanks for you post..you lot are keeping me going.

    <b>Updated on Sep 30 2010 5:47PM:</b> Should say make you feel ill. iPad will use it's predictive spelling when you don't want it to!

  • I'm not sure what to say to you Bunny except I dont believe people feel ill like you do without something not being quite right, As I have explained before I broke my neck two years ago and that kicked off renal failure in turn kicked off Graves im now waiting for a kidney transplant. But it wasn't until I had a thyroid storm ( thank God I was in the renal ward at the time) before they did a test and told me I had graves disease ( overactive) all the signs were there the shaking was so bad I could'nt hold a drink without spilling most of it, fainting, vomiting, heart pounding and racing blood pressure through the roof, anyway pointless telling you all the boring stuff what im trying to say is I dont believe the Drs know half what is going on in our bodies my suggestion to you is to drive them mad until you get your answer because there is one its not in your mind thats for sure.

  • From what you are saying there is definitely something wrong. Keep trying the Drs. Took me ages to get a blood test. I even shouted at one Dr. They all said I was depressed and all of them kept offering me anti-depressants. Finally the blood test proved I a hypothroid. I knew it wasnt just depression. Now I have an appointment for endoscopy because I have been on for months about my right hand side. I doubt if I would have had that if I didnt keep going on. Keeping going on, dont worry if you feel you are becoming a nuisance, this is your health and you obviously need help. Best of luck

  • Oh I will fight be sure of that. Cos I'm on benefits I have to go to a support to return to work interview in 2 weeks tie..haha!! You care right..soothing is wrong and somewhere there is an answer for this

  • hi bunny ,sorry to be quite, feel like s.......! wait to get your results in writing..just because he says he THINKS there normal, doesnt make them normal for you!!what is norm for you isnt norm for me ( you know the tune!) dont get down get angry..wait to hear what he says ( got to give him/her a chance) then ask for your results..( written down..)dont get sad..that wont help you x YOU KNOW YOU FEEL like S....! ( not normal for you!)read and plan your treatment! your a teacher NOT STUPID!sorry l sound bossy..just want you to be confident and not think your going barmy..DONT LET THE B>>>>ers get you down...x

  • Thanks Donna..it's one of my failings that I blame myself "is it in my head?" rather than I fell bloody awful, they must be able to find a reason for it"

    I'm so glad I have this site cos I know if they say I'm imagining it then there's a whole bunch of you out there the same..

    Wellthe site seems to be split between those with identified conditions whose treatment isn't satisfactory/feeling crap and those who feel crap, haven't got a diagnosis but find like sufferers in the first group.

    So as someone said in the blog before mine we can all help each other.

    If I hadn't found this site I don't know what I'd be feeling now..very frightened I expect!!!

  • tinnitus on list of hypothyroid symptoms in Dr Peatfields book your thyroid and how to keep it health. Definitely a thyroid thing. Best wishes to you all. I second the magic wand comment. I do believe though if we all support each other we will win this battle in the end x

  • Hi Bunny, just thought I would write a few words as you seem to be finding things quite difficult at the moment. I know how you feel, sometimes I am so exhausted I cant go out at all, just walking 100yards is too much. I am seeing Dr Peatfield in two weeks time, I have given up on the doctors and t aking matters into my own hands as much as possible. When is your appointment. Will keep in touch and let you know how I got on, I have researched him, and am hoping he can help. Seems like the best option, especially when I cant tolerate thyroxine and the doctors havent come up with anything else. Take care Bunny, and keep in touch, people on this site will help and support as much as possible. xxx

  • Thanks, my appt is Tues afternoon. I've slept most of today again!! My best guess is that I am just hypo TSH around 3 and it's going to be a he'll of a struggle to prove it cos of the test figures her in the uk. I was even upset yesterday thinking " but if I'm not hypo" I won't be able to be on the support site, cos it's only for people with Thyroid problems" ....and this site has really been so helpful because vie dared to be objective and honest about how I really feel, rather than putting up with things.

    I will post on Tues when vie seen the Endo, thanks for all you helo and support.

  • what is your neck size

    do you have dry mouth mornings

    do you have headache in the morning when you wake up

    Updated on Oct 2 2010 1:21PM: do you dream

    do you gasp for air

    do you snore

  • Hiya...no obvious changes to neck. My mouth is unbelievably dry in the morning...much more than normally..I've touched my tongue and it's felt like it's a piece of sandpaper.I do often have a headache when I wake up too. I am not sure what you mean by gasp for air...but at the slightest exertion I get very breathless,but I am overweight. But I think vie always got out of breath much quicker than other people.

    I don't know if I snore..hubby and I still deeply in love, but sleep separately.

    I do dream..every night and all the time. Don't get me started my dreamlike is a whole other world!,

    Why did you ask thos questions.? What do you make of the answers? Do you have the tinnitus thing several of us describe? Thanks for your concern..always good to hear from people.

  • those symtoms are classic sleep apnea

    <b>Updated on Oct 2 2010 6:28PM:</b> have a look at

    sleepguide.com

    and see that if your symtoms match sleep apnoea or apnea as the americans spell it

    <b>Updated on Oct 2 2010 6:44PM:</b> sleep apnea impacts on every organ in the body including the heart

    <b>Updated on Oct 2 2010 9:10PM:</b> Now, here is what you can do for obstructive sleep apnea diagnosis in your own house:

    1.Get an MP3 player/recorder

    You will need an audio device which can record your sleep sounds for many hours. You will need data for at least 2 hours of sleep.

    This audio recorder should have a USB connection (or other types) for your computer, to upload the mp3 file.

    RCA VR5220 512 MB Digital Voice Recorder (Black) is a a great recorder for the 29 dollars spent. It's simple to use and is also compatible with Mac.

    If you want the best recorder, then Olympus LS-10 Linear PCM Recorder can be what are you looking for, but I don't think you need the best gadget in world to record your sleep apnea events. You should better spend the money on a good CPAP mask, if you will have a treatment with CPAP machine.

    2.Upload the file into your computer.

    The next morning, connect your mp3 recorder to your computer and upload the file. You can listen to the sound of your sleep, to find if you have a loud and irregular snoring, or your stop breathing in sleep.

    But you are very busy and you don't have time to listen all that noise. So, I recommend to use an audio software where you can see and analyze your mp3 file.

    Fortunately, there is a free software to use, free MP3 manipulating program called Audacity. Just dowload the program and install it to your computer.

    Once into Audacity, hit:

    ?edit,

    ?then select all,

    ?then effects,

    ?then amplify

    ?then UNcheck the dont allow clipping box (audio idelity is not at all important here)

    ?and finally enter 15 in the amplification (db) window.

    ?Then hit ok.

    3.Analyze your sleep

    You can easily see each breath (or snore) displayed in the graphical Audacity form, by clicking on the magnify (+) key a couple of times.

    If you have a normal sleep pattern, your graphic detail should look the same throughout the entire recording. However, if you stop breathing in sleep, then...you will see unusually long gaps between breaths.

    If you find a long gasp in your graph, select the beginning of it and hit play. You will hear nothing, then a snort or a gasp for air, and snoring.

    This is obstructive sleep apnea event.

    You can also use a portable pulse oximeter to monitor your oxigen levels during sleep. A patient with sleep apnea often has low oxigen levels, and a pulse oximeter will show you if you have your oxigen levels lower than normal.

    The oxygen saturation monitor should be a recording oximeter, to insert the data in your computer after you wake up. Just like the mp3 recorder.

    If you have sleep apnea, you may often see that when a long pause in your breathing occurs (see your graph from Audacity), your oxigen levels will drop from 99% - 100% to 93% - 80%, or even lower.

    To push the limits of your sleep apnea testing, and learn more about your sleep, you can use Zeo sleep monitor..

    This fantastic device will show you the quality and quantity of your sleep. You will find out exactly what’s stealing your sleep, and how can you improve it.

    Zeo is composed of a lightweight wireless headband, a bedside display, a set of online analytical tools, and an email-based personalized coaching program. Click here to learn more about sleep apnea monitors

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  • I am a new blogger, so Hi everyone.Thank goodness I found this site.I read the symptoms of others and now know that mine are real too. I have aches in all my joints. I have Tinnitus but never connected it to my thyroid. I am tired all the time, but don't sleep well. Came down at 3am this morning and wrote a letter to my penfriend.Eventually went back at 5am.I am on 50mg of Levothyroxine, which I have been on for six months so early days.I get quite depressed, doctor wanted to put me on antedepressents, but would rather avoid them if I can. Just been able to hear others with similar symptoms has been a godsend.Keep on writing out there!!

  • hi bunny..you say that you blogged about your hos visit last week ..BUT l still cant find it?l think the notification emails we get are up the creek as l get some and not others..its weird l just want to read how you got on!! l hope you are feeling ok..l cant see you have written since before your visit your appointment? bestwishes donna

  • Hi Donna...just a quickie...all the tests were normal and I really do mean normal......TSH down to 2.2. So no chance of endocrine treatment and yes the T3 and4 everything seems fine. So I don't know what to make of it. I do feel vetoer this week but am so glad I found the site and recorded the bad time I was having last week.

    I did post on 5 th but Lord knows what happened...I thought it slightly odd I'd had no comments at all. Then yesterday I came to the site again and it's nit there.

    Gotta dash for now but be back in the next day or so for update.

    Thanks for thinking of me it means a lot.. Let me know how you are

  • Hi Bunny, glad you are feeling better, i too couldnt find your blog, so am glad i have now found this comment.

    Best wishes

    Angie

  • Hi...what's even stranger is I wrote the whole thing again at the end of last week when I realised it wasn't there and that is missing too!!!! I joked about could I still come on here if I've got no thyroid problems!!!

    When I saw the other blog today referring to Epstein Barr virus as a possible basis of symptoms like I have when tests are normal...I thought was in response to my blog!!!! It's onl the last 24 hrs I've started feeling fluey but it might be just flu!!!!! Thanks for the contact.

  • Hi...what's even stranger is I wrote the whole thing again at the end of last week when I realised it wasn't there and that is missing too!!!! I joked about could I still come on here if I've got no thyroid problems!!!

    When I saw the other blog today referring to Epstein Barr virus as a possible basis of symptoms like I have when tests are normal...I thought was in response to my blog!!!! It's onl the last 24 hrs I've started feeling fluey but it might be just flu!!!!! Thanks for the contact.

  • Hi...what's even stranger is I wrote the whole thing again at the end of last week when I realised it wasn't there and that is missing too!!!! I joked about could I still come on here if I've got no thyroid problems!!!

    When I saw the other blog today referring to Epstein Barr virus as a possible basis of symptoms like I have when tests are normal...I thought was in response to my blog!!!! It's onl the last 24 hrs I've started feeling fluey but it might be just flu!!!!! Thanks for the contact.

  • Hooray for you seeing Dr Peatfield, He will sort you out and make you feel like a real human being again. Hang in there!

  • I keep reading about Dr Peatfield but a lot of people that see him still appear to be very ill im a bit confused, I was thinking of making an appointment but there seems to be conflicting comments, can anyone please put me straight. I have very little money so simply cant afford to spend it on something that may not help.

    Dancer x

  • Hi Dancer,,,,I know exactly what you mean!!! I've not been to this site for a while since My results shows I wasn't hypothyroid, my symptoms have continued to be more or less the same. I've been told my symptoms COULD be those of depression, which can apparently have a much more physical manifestation than I'd reckoned on. My tiredness continues, I'm HUGE, I cat be bothered to do anything....but the odd thing is I am so 'chilled out' I don't really seem to care!!! My GP is running basic bloods again for B12,anaemia,

    Liver and renal profiles, TSH. He also wants to change me from citalopram ( antidepressants) to fluoxetine (Prozac) because he says it produces a more "up energy". Now I ve had fluoxetine before and it was ok but

    Not stunning.I'd also heard that real Prozac as opposed to the generic version of the drug , gives a much better outcome.....even though many Drs say that's not possible it's an identical drug. So I'm gonna ask for a private script for Prozac and see how I get on.

    Interestingly, the rarer or less reported side effects of citalopram seem to match a lot of my symptoms but I'm guessing that will get shrugged off.

    Sorry I can't help more Dancer but I'm with you in spirit!! stay in touch if it helps.....

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