How bad is your tiredness

[Bunny]

I can't write a blog as my approval is still pending.

Tiredness is, apart from the huge weight gain, the worst symptom for me and I wanted to ask about degrees of it and how it affects all of you out there.

I've always been a really good sleeper, tending to sleep too much at times of previous illness and depression. But now it has changed, during the night I fall asleep but keep waking up to pee, fall into a deep sleep in the early hours and it is nearly noon usually before I waste. I then still feel totally exhausted and takes every bit of will power to get up and dressed. Some days I spend the entire day on the sofa. Most days I don't do anything beyond being on my lap top, listening to the radio, TV or read but the last week i haven't been able to concentrate to read.

Then late afternoon I usually need a nap. That is to say I want to sleep, I seem driven to sleep..I could sleep for Britain.

Fortunately for the first time in my life I am not working ..I am 54 and have always worked, through school and Uni and I've never been out of full time work since then. But at the moment the thought of going out to work seems totally incomprehensible...I just can't imagine ut.

What I'm asking is this typical of hypo...is it the symptoms of that or is it my mental state ie depression. Strangely I have felt much more depressed in the past when I was physically fitter, weighed a lot less and was working. I am not sad or anxious, just totally flopped out like I've had a large dose of sedative!, I wonder is this it for the rest of my life or when I get the results of the test, and hopefully treatment, will I become active again.

I have to take a short walk into town and that feels beyond me but I have to go....the shop staff will ask me if I am ok and offer to get me help!!

So if you read this please let me know if you have felt like this...

[Jaidee]

Hiya Bunny - I have very tired days and tired days. I was diagnosed two year ago started on 75 mcgs of thyroxine which has gone up to 150 and at the moment is 100. but no matter what dosage I am the tiredness remains. I make the most of the tired days and do as much as I can. On the very tired days ( like today) I just about function.

I don't know what to advise you but just wanted to let you know that you are not alone

take care

[Bunny in reply to Jaidee]

Do you sleep as much as I do on very tired days?

I'm going through diagnosis at moment go treatment might well work for me? I have to hope....

[trw99]

this is my problem and i was diagnosed with sleep apnoea 2005

two years later i was supplied with a cpap (resparatory machine for sleep apnoea)

on seeing my respiritory theripist, she said my tiredness now was not caused apnoea.

on seeing my doctor he arranged an ecg and told me i was having silent heart attacks, and have been given a spray for under the tongue,

i am still waiting on the hospital

[Bunny in reply to trw99]

Can you tell me more about how tiredness affects you? Am I the only one or am I just lazy?

[donna in reply to trw99]

hello bunny l had ME for 12years(not sure now!) before being dianosed with hashimotos 2 1/2 years ago.l was exhausted..l explain it like, you know you would do any thing for your children, sleepless nights, busy days, keep going and going..take them to school and do the running around..WHEN l was at my worst l couldnt do any of that..l couldnt even walk them to school or even think of driving them anywhere.my arms and legs and brain didnt funtion well at all..l had my diagnoses and then eventually as l was still poorly, with advise of lynn mynott l discovered that my adrenals were not working properly..a reason to explain why l was having terrible sweats and the levo wasn't working for me..have a adrenal test/cortisol, information is available from the thyroiduk.org website ...l disovered my cortisol levels were so low in the morning (when they should be at there best,as you have slept all night)which is why l never woke up before 11am and then could sleep on till the afternoon! LUCKY for them my children are now grown up and NOT reliant on me!l would then become a bit more awake by teatime and then would be well awake by 10pm ..my mum and dad always joked when l was a teenager how l suddenly woke up when the news at ten came on!everyone would be winding down and getting sleepy and l would start chatting none stop!and could have gone on all night! which is what l did when the children were very young doing my ironing and everything till the middle of the night!l do believe l have had dodgy adrenals and thyroid problems since my teen years as lots of things l suffered with then and how my health was in the years that followed makes me undianosed since l was in my twentys!

NOW l take pregnenalone and DHEA for my Adrenals which has improved my sleep patterns ..l stopped taking it in january as my dr said my adrenals had recovered..that has proved to me how much l do need it..l became so tired again was very anxious and jumpy(someone walking up behind me would make me jump and nervously shake)family noticed this.l was very low and had no umph! in me no desire to do anything or go anywhere.kept waking up in the night and was so tired in the afternoon but wasnt able to sleep..lve been back on the dhea/pregnenolone for 4weeks now and every one has noticed the difference..l havent been able to reach my original dose yet as l am having trouble getting to the original dose of armour so l am very hypo at the moment. as shown in my recent bloods.BUT the improvement is great..My dr said in feb through to july that l was hypo but l knew that it was more than being hypo..He agreed with me at my appointment 2 weeks ago...l know being hypo makes you tired but add in dodgy adrenals and you become tireder than tired!sorry to ramble on but hope this helps someone x

[donna in reply to trw99]

bunny you are not LAZY or tired..we all like a lazy day every now and then but NO ONE! would put their name down for weeks or months OR years being able to do nothing!even washing or taking a bath is exhausting...l feel like lve done a days work after a bath!l did have a cognitive therapy course at the hospital when l was at my worst with ME they teach you to pase yourself in all you do..they also teach that you CAN if you have any energy do something you enjoy instead of running for the ironing or cleaning!my mum couldnt understand why l would be sitting down making a card instead of irioning or sortingout what was for dinner!l do NOT have any guilt over high ironing piles or unhovered carpets! fo what you can wheen you can it will still ALL be there tomorrow!you may well get depressed but it didnt start that way! you probably ill before you got so fed up with your lot!your entitled to be depressed but that DOES go when your treatment is correct..

[Bunny in reply to trw99]

Thanks for that Donna. Luckily , in some ways, i nevr had kids so there is just me and Terry here. He has been I'll since 1993, badly smashed up leg, hep c and osteoporosis and I worked as a teacher. The house is in a he'll of a state because now neither of us are well enough to do it.

I can't remember when I hast washed my hair about a month..and I am ashamed to say I used packets of wet wipes to keep cl,ean cos I can't force myself to bath In our crappy bathroom.you make me feel better cos you sound the same as me...and your dayily routine and timings sound very like mine.

terry's just taken 2 large bottle of pee to the Path lab...to be tested for cortisol. And all the bloods are for all sorts of hormonal issues not just thyroid. I have another appt on Oct 5th anad hope they can find something clearly showing in the results.

Please stay in touch cos we sounds like we have things in common and the worst thing about this syndrome is being so isolated cos normal people have no idea what we feel like every day. Like you I think vie had something since my teens...vie never felt normal..oversleeping , eight issues but not eating like a pig, heavy,..very heavy periods...I am now getting tested for PCOS. I gather that can lead to thyroid?

Need a cup of tea before another recline. Thanks for being do ressuring

[donna in reply to trw99]

hi AGAIN sound like we are similar! l had endometriosis before having my two ...lots of lumps removed from groins as well ..after having my second child (she 22 now) ,bad birth and ended up incontenent!l had a operation to sort that out and ended up not being able to pee! so l learnt to use a catheter..then they undid the operation..but that didnt get me back to where l was in the first place..!so the catheter stayed. l was having urine infections every other week..l spent the next 18years on anti biotics! but as a side, l am allergic to peniciilin and anti biotics so when l took a course they improved the infection but left me like a zombee for 5 or 7days ..l was there but not there ,couldnt talk and was in bed unable to look after myself or the children..then the back loin pain started they didnt know what it was as my kidneys were ok but it felt like kidney infection pain but some times with no infection! l go to the national hospital for nuerological deseases as they eventually fitted me with a sacral nerve implant to help me pee properly..l had this done four times. l attented the pain clinic..they put me on tramadol and gabapetin for the pain.no reason for the pain just a plaster for it...But then spent the next three years in bed ..lm not joking!l was completely outof it and dont remember alot other than my ME? was at its worst..l had the implant moved AGAIN and came out of hospital with terrble thrush..the first time l tried the anti candida diet..any way life continued with infections and me STOPPING the pain relief as l deciced to be in pain and alive, then out of pain but brain dead.. all through this time l was tired and had no energy ,very dry skin and l ached so all over ,l didnt wear shoes as the soles of my feet hurt so.my son at the time had fabric stretchy trainers so l wore them if l HAD to go out to the hospital..like slippers!l did have tsh blood tests but NEVER anti bodies.( l now know).

l have since looked at past test results and have seen that l would have been treated in 1993 (five years after my daughter was born) if l had lived in europe or America, .l didnt know at the time to ask for my results they just said they were OK!!still on lots of anti biotics and becoming allergic to every thing anesthetic ,tablets and the only anti biotic that was more tollerable than all the others! bit of a state.

any way in oct 07 my sacral nerve implant blew up on the travelling esculator in tesco! the magnetic must have been to strong so to keep the trollys on.was so poorly that my friend did my blood preasure and told me to go to the dr! l was SO HAPPY WHEN HE SAID after bloods l was hypothyroid!little did l know!l was just happy to have a reason to be feeling like l did!SAD.went in to hospital in april for a new sacral box but they took me down and said later it was ok..IT WASNT so went in again in Oct08..they put in a new one and l must say it was the beat it had ever been!having tried levo thyroxine and not doing well onit ..feeling worse than l did and having terrible sweats! lynn suggested getting my cortisol and adrenals tested .

l then had to find a dr to treat them and my thyroid!l cashed in my mortage endowment policy and visited a dr in Harley street( l live in london) he was NOT GOOD and though he did give me armour and prgnenalone l stopped visiting him after three visits..l spoke to thyroid uk and the advice line and found the dr l am still with.. l can honestly say that in april 09 l left for a long stay in spain feeling the best l had for years ..l was only there for two weeks when my back went all wrong..( since found out that the electrode on the nerve in my spine damaged the disc.bit like the princess and the pea story! the disc rocked on the pea!) my son came and got me ,out came the tramadol AGAIN...went into hospital in may to have the sacral nerve box out as l couldnt have a mri scan with it in...then l went into hospital again in august ( after a dose of swine flu cancelled the first date)l had the disc removed after spending from april to august in bed! l had my 50th birthday in hospital!all the while l was ill with my back l kept saying l was HYPER ..my private dr said it was the morphine patches that l was then on..l was having sweats again terrible night mares ,when l could sleep and was loosing weight! ( RESULT) after the summer l had lost three stone and was very weak..so we decided to go back to spain for a holiday..three days before we were due to go l was taken to out local casualty with a suspected heart attack ...wrong my t4 had gone from 1.4 in the july to to 17.6 in october ..so l had been hyper ALL summer.. l had to lower my tablets..and l havent been right since! lm so sorry to have gone on so long and spill it all but it had to come out !if you stayed t the end thankyou! but ldont blame those who bailed out early! still trying to up my dose of armour and dhea prgnenalone but my body just wont have it so l remain hypo and not good ..though the dhea /pregnenalone has kicked in and improved my health alot ....keep in touch and l hope your tests results are helpful ...in the persuit of making you well. x

[sallyann in reply to trw99]

wow....poor you....i hope you are making some progress.....and i thought my exhaustion..brainfog and doctor telling me im satiisfactory and to take up swimming...was bad....blimey....this site has opened my eyes....its a shame more doctors dont take the time to read it ...anyway i hope you are doing ok...sally

[ValSue]

Hi Bunny - sorry to hear you're feeling so low, though I could be reading about myself.

I am 55 and was diagnosed approx 2 mnths ago, and I am on the lowest dose of Levothyroxine (as I am very intolerant of most drugs). The first week was hellish, as not only did I have bad side effects to the drug, but I had no benefits of it at that stage.

After approx 10 days I was like a whirlwind, and got more done in 2 days than the previous 2 mnths, but was drained for several days after. This happened again, and then evened out. I definitely felt improvement on the drug.

Now though I have gone downhill again. I'm not working today, as yet again, I've had the sort of night you describe. Though I sleep to an extent I don't feel as though I have. I am in pain throughout my whole body, and it feels as though the nerves in my whole body are jangling and oversensitive (similar to when you have flu). I keep getting sweats. I feel very weak all over, and find it difficult to pick things up without my wrists flopping. I am tired all the while and get little done.

I'm seeing my GP next week and sure she will up my medication.

I hope that things improve for you Bunny - you are not alone.

Best wishes

Val

[donna in reply to ValSue]

hi val,you sound just like me..especially the pain and going hyper bit..l cant up my tablets at tho as even if l cut my 1/4 grain armour into 1/12 to add to the 1/4 lm taking l go hyper! even the supplements l take can make my heart beat fast and me go all shakey..l was taken off the levothyroxine for the reasons your having hyper and sweats and such bad pain all over..but now it seems that the improvement l had when l was first on armour has gone a bit..though l dont have the pain anymore..only when l eat something l shouldn't.It would be interesting to hear how you are if your dr puts up your levo..l just got more sweats and my condition got worse in the end l had to stop taking them ..and infact all my bad symtoms went >>other than still being HYPO!.lynn mynott advised me when l was like you to have my adrenals /cortisol tested and eventually l found out why l was reating the way l was to the levo..l did ask my dr if l was allergic to the levo ..he said that it was possible to allergic to the lactose in it ( makes sense when lm allergic to all dairy!)but doesnt explain why l am still having the sweats and feeling rough on the armour and dhea! hope you soon get sorted out..x

[Chippysue]

Bunny, I have written my story in a few parts, have a read.

I went 23 days once where I never left my house. I slept most of the time. I take 200mcgs of purified levothyroxine and 10mcgs of T3 and still have to use a mobility scooter.

If I have a day where I do something, say a bit of ironing and light housework and a social occasion then I am unable to do anything the next day. After a weekend away it takes me 8 or 9 days to recover.

I went out for the day on Saturday where I was crafting, I was chatting all day. I hardly left my sofa for two days.

Friends say it's great that I am socialising again but they don't realise that I have to plan doing nothing before and after. There is absolutely no way that I could contemplate working. I still cannot cope with long telephone conversations and cannot drive on the days of real brain fog.

I do hope that you can start on thyroid meds soon.