Doubts before diagnosis

This will be briefer now because I wrote it once and tried to upload it an somehow it got lost.

I woke up at 9.45 ( didn't try to sleep till after 2am) made tea for us both,drank mine then fell deep asleep had nightmares and woke uo at 12 noon feeling awful. I am trying to be objective and describe how I feel....my eyelid was twitching, fairly constant now, headache, feeling in eras like tinnitus, absolutely exhausted and wretched, muzzy head, giddy feeling. My muscles weren't aching but I am aware of the muscles in my arms and legs.

I felt so awful and tired, throughout my whole body all I could do was stay where I was on the settee ( I sleep there..long story but it's better for my back,and our awful bed).I felt too tired and weak to stand and start anything like a normal day..and I have lots of days like that. It's 2 weeks till I get my results from the Endo.

I am terrified they are "normal" and praying they show something that has at least the hope of treatment. The Dr isn't here when I am having a bad day like this...surely normal people don't feel like this when they wake up?

With the work situation I described in my last blog I rarely see anyone but my hubby and I sleek to my Mum on the phone but she is350 miles away...they are both really I'll and feel as bad as me.

I can't remember what it feels to be normal... And I'm really obese now too..really tall but large too and I hate everything about myself. What on earth will I do if the Endo says the tests are all ok. I have prepared a chart with the list of 14 tests he's dine for most possible hormones, and the test range and left a space to put in my results when I get them on5 th Oct.

I couldn't think what to do...so I am here in the settee with a blanket over me resting and using my iPad. I have to say it has been great , I can read books on it , play games write posts contact you..etc it has

Kept me sane.

Meant to say..noticed my mouth is now very often dry. Also I used to sing a lot but a couple of years ago when singing in assembly at my Junior School I noticed my voice was hoarse....don't know if it's affected my speaking voice but definitely singing and I get breathless really quickly..I blamed my weight but reading seems to suggest even slim people who are hypo get breathlessness.

Well thanks for listening it is all I could do to get it off my chest. I know someone out there will have felt the same.surely this can't all be psychosomatic?

13 Replies

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  • hi bunny,lfeel like you do..its NOT in your head your NOT mad..l have been awake untill 2-3 am this week ..l get my most restful sleep early hours ,till l wake up (ANYTIME!)l have a cup of tea about 6-7 then l am able to have a nice sleep its silly but its a better sleep than l get at any other time.....

    your symptoms (only my opinion )sound just like mine..l have hashimoto's/ hypo and poor functioning adrenals ( hardly operating at all at the mo)its interesting going back (though NO FUN!)to where l was when l first was diagnosed..breathless ,lethargic,painfull body,achy glands under arms,dry mouth ..muzzy headed..blurry vision,not able to wake in the morning but awake (and very much more alert ) from tea time 5-6ish - all night..low blood preasure ..low body temperature,l feel like lm here but not here.( my gp said "distanced from my surroundings" l thought yeah that sounds about right!)..and for the adrenals..anxious,jumpy,jittery inside,teary,not able to sleep...

    l was at one stage beggining to feel a bit on the mend..but had to stop the armour..things havent been right since..though l am now back onit...

    so l can say l was bad....then a bit better...now bad again..

    last week l stopped my dhea/pregnenolone because l was having side effects..

    this week my adrenal symptoms are back....bad...

    so today l felt so bad without the dhea..l cut the powder in the capsule into 1/8ths and put it into seperate capsules...and took one..

    its made a difference already...but l dont know wether to take one tomorrow...as l was cutting into 1/4 s untill last week..but l think it built up and made me feel bad..maybe l will take it every other day till my new dose capsules arrive..

    my dr says to play with the dose as only know how l feel..

    l feel bad as well as l am only taking 1/4 grain armour..and l am very hypo at the mo..l was on 1 and 1/4 of a grain when l had to stop them..so l am well under medicated at the mo..just can't up the dose as it makes me bad....

    so l feel ,sleep when you can, do what you can WHEN you can..lf you cant ,it will be still there tomorrow or next week..just eat and drink..try and sleep , even cat naps all day..

    and keep your brain active..(on the sofa )! its funny that when l was on my tablets before l went down hill this time..l got fabric cut out a dress...got really into making it ( enthusiasm l think they call it!) but l havent touched it to finish it..the days just wind on..l have SO MUCH time. but l sit in a melase..l cant say what my kids call me when lm in a no brainer!...other people would love all that time to make and doo.BUT my brain has the ideas and the wanting to do things..BUT my body says NO NO NO !! have you ever had someone call ,or ask if you fancy going ..doing ..such and such and you and the brain says yeah!( because that is what you would have said before ) that would be great!! but later you think...the brain must be having a laugh at the body..taking the mick!! cos there is NO WAY that could POSSIBLY happen!! so MEGA disapointment all around...

    l am 5ft 11in so hardly petite...probably like yourself...

    but l am not saying fat /big or large anymore...l AM JUST ME.

    ( although l would like to be the same weight as the me l was a while ago)

    l met a girl this week...who is big...( bigger than me)

    she has a brain tumor...and is on medication which makes her bigger..she was saying how she feels ( another op soon)and how bad she feels about her weight...l thought l couldnt possibly say yeah lm fat l know how you feel ..because compared , l was anorexic...she would love to be my weight ..so

    l thought best l start liking it..same as my VERY straight hair...

    the curly people who blow dry theirs straight! and the straight haired people who curl theirs or perm it (showing my age!)

    are we ever happy with what we have got..!!l would settle for feeling WELL with a bit more stamina..with that to work on l could go far...!!!l wish the same for you...hope you sleep well tonight ...and your future diagnoses is all you want it to be!its silly but as past illnesses have proved to me ..its better for you and all around when you obtain a label or name for how your feeling....so you can say lm like this Because!and there is hope of treatment.. goodnight..

  • Oh Donna thanks for that!!! It does sound similar doesn't it? I've just read an article on holistic health ..can't get exact site cos on the iPad you can't multi task...but it repeats what it says on a lot of sites inc Thyroid UK. It def says that more and more Dr reckon most people should be somewhere between about O.5 and 1.8 in the TSH levels. Mines only 2.6 but taken early morning should be higher when I get the next results.

    Someone else on the group messages me a few weeks ago saying with that TSH I'd be getting treatment in US Germany Sweden and other places even at 2.6.

    Like many I have had some of these symptoms for years and been treated for depression off and on..never very serious. I've always been hard to get up in the morning, take hours to come round and fine in the evenings.

    That's partly why I sent my first blog because I know this isn't depression..but me being exhausted too tired to move or do anything though my mind like yours has lots of ideas...it didn't do that when depressed.

    Your description of your day is just like mine..I am quite awake now and it's midnight. You are right the good sleep is after 6 am to whenever I wake up but it's as if I've never had enough.

    I am not going to give up on this...I will fight to get treatment.the endo I saw had the sense to test my DHEAS and cortisol, testosterone and oestradiol and all the thyroid features and antibodies.

    Thanks so much for such a full reply. I know it will help Tel to read it too. I will get the place for the article I read earlier. Stay in touch please..ire ally need a new circle of friends who are going through the same as I am.

  • hi are we the only ones STILL awake!!

    burning the midnight oil! my mum doesnt understand..she says you should expect to b..!..dy tired if your up all night.. l dont bother trying to explain any more...and what with the eating thing ( or not eating much) at the moment they all think its in my head any way..l am not in england at the mo ..l was introduced to some one who kept insisting l needed l drink.( l sooo do but cant!) they become a pain..go on have one over and over...they backed off when l said l had had a drink problem before!

    oh lm sorry to hear that..suppose it would muckup the 12 steps etc! l said yes thats right...problem solved !! left me alone!!ha ha ...night...again

    <b>Updated on Sep 21 2010 8:42AM:</b> just shows you ..its ok if they think your a recovering alcohollic! (which l am not ,fortunatly) but to say you cant drink because of allergies or YOU JUST DONT WANT OR CANT HAVE ONE! is not good enough!

  • Haha another coincidence I was in AA for 2 yrs still don't drink, got too low to go to meetings..so done the steps. Don't you dare have the 1 drink. 1 is too many and 10 s not enough!, where are you now then !? Bsiac Instinct has just started but I think I will turn the TV off and listen to radio 7 and play on my iPad!!..are you still up?

  • hi there ,just added a bit to my comment..

    sorry was just having the person on...but it worked for me..

    have you tried going on the anti candida diet ? l got a book and tried it before l was diagnosed..l found it very good and helped lift the brain fog..and helped pain..it is meant to get rid of the yeast over growth in your body..l found that if l was drinking 1-2 glasses of wine l was drunk..rather the bottle l had been able to polish off!before which would make me RELAXED! l have spent the last 17years on anti biotics a botched operation left me unable to pee..so catheter= MANY urine infections..l later had a sacral nerve implant which helps you pee..had a major yeast problem..l have stuck at the diet for 4yrs now l do have fruit...l also was dianosed with leaky gut..a knock on from the candida..

    it all makes a bigger picture which adds to the the fog and brain problems! have you read about any of these problems they can all be connected..my candida problem is controlled now and along with taking grape fruit seed supplement (prescribed by dr along with other supplements) l have found the urine infections have decreased.. he says my body has good bacteria in it now,also take probiotic capsule form ,which make me less of a good host to the bad bacteria and infection..Though saying that l have an infection now ho ho ho!have a read up.....have a good day..

  • ps ...erica white as a good book ..l used this one (cant remember the exact title) she also has a web site..and l have just found beatcandidapack.com

    there is a free down load booklet and all you need to know in fighting candida...if you cant cook you often grab a sandwich or cake or biscuits? which does the cause NO good! have a read x

  • Went to bed at 3 Woke up at 3.45 after45 mins .didnt sleep again till 6 for 90 mins then awake again till 9 then i fell deeply asleep till 10.30 woke with stinking headache, sore stiff knees and wrecked. I am having somevtea then going back to sleep!! Oh b.... r!!

    I don't think I have candida but my diet is shocking at the moment. Tell myself I will sort itbwhen I get a dianosis.

    Ooh to sleep....be back later

  • Bunny

    Please Please Please I cannot say enough please's! Get hold of a book called 'Adrenal Fatigue' by James L Wilson N.D. D.C. PhD. Everything will become clear to you.

    Wellwisher

  • morning!l also recomend the james l wilson book...you will say thats me!

    AND sorry "BUT" you dont see your dr for TWO whole weeks!DONT put of till then what you could start now..your body is like a car ,if you dont put any petrel in it wont run properly!l know you probably feel like you need a new

    engine..but you can think of good things to easily prepare and eat even when your laying on on the sofa!go on spoil yourself to something good for you! your worth it!ps are you taking iron?b12? vitD? have a good day.

  • Hi Bunny, so sorry to hear that you are still suffering. Please check out tpa uk website. Have a good look on that website and see all the threads posted. I am sure you will glean lots of good information and pointers to good reads etc. They don't profess to be medically trained and always advise contact with medical professionals. jugemvicsar has given you sound advice re adrenals. There are lots of reasons why the thyroid/adrenals don't work properly and it will be a slow process of elimination. Please please don't waste any time and get the ball rolling by going to the Doctors. Best wishes x

  • Thank you. The GP heard my symptoms and referred me to the Endo desire my TSzh only being 2.6. I saw the endo 3-4 weeks ago and have had bloods dine then for everything ic full thyroid screen, adrenals and cortisol. My next app tis 5 th Oct. I tried phoning the receptionist for any test results but no luck so just 2 weeks to wait. Believe me when I get them I all post straightaway cos everyone has been so kind sending info.

  • Bunny, not long now hang on in there!!!! What I have picked up is that when you get the results ALWAYS get the lab reference ranges or else your results won't mean anything to those on here who can interpret them. I had a Synacthen test done today so I will have to wait until about early November I think. x

  • I have made an A4chart with the tests in a column down the left margin. The next clump says what the initials mean ie TPOab or DHEAS, the third column is the reference range for mr (someone on this site pointed me to them on a Brighton and Sussex NHS Trust site) the last column is empty for my results when I get them.

    The more I read about adrenals the more I think adrenal fatigue might play a part. It is so like me on TPA?org. Best sleep 7-9am..never wakes till 10 am often sleeps till afternoon. Dip / nap sleep between 3-5pm wakes afer 6 and best time can be surge late evening from 11pm to 1-2am...that is eeril like my pattern, well it IS my pattern . So I will read more and have it to hand for the Endo to consult....ipads are very handy for that..fit handily into handbag with documents all on.!!

    I had very little sleep last night and am aching to sleep nouns don't think I will be awake much longer.

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