Anyone else feel dreadful upon waking??

Hi folks - just wondering if any other Hashi (B12 defic/ Sjogrens for that matter) sufferers are experiencing feeling ruddy awful upon waking? I know I am in the middle of working with my GP to increase my T3 again (I am one of the lucky ones with an endo who treats me with combo t3/t4 and my GP listens to me!) but I cannot articulate how utterly dreadful I feel when I wake up on a morning.

Thing is - after a half an hour or so - I feel OK - and I don't feel tired and exhausted most days like I know many of you do - so you probably think I should button it - but the first half hour of the day - I feel really pants - bigstyle. It's like I am coming out of a coma - not sleep!

Wondering whether there could be some explantion for this awful symptom - I have put it down to unrefreshing sleep due to my 55 year old age and female gender - and suppose that could be it - but wondering if anyone has had this and taken action to improve it?

More blood work in another week for me - then results - then increase T3 again - then endo end of Nov.

thanks a million - the sense of community on this forum is priceless.

31 Replies

  • Hey there, perhaps you can take some t3 before you go to sleep.

    I save a half grain of nature throid before sleep as helps me sleep calm and wake up.

  • Hello hashiB12sjogrens,

    I used to get a headache if I laid in bed in the mornings...... really annoying at the weekends as just had to get up.

    One doctor told me it was a build up of hormones. I drink loads more water now and never get the headaches .


  • Hashi...I too feel ruddy awful first thing, this lasts until 1000 every morning without fail. I find if I get up and eat and drink something around 0600 things improve. I have the shakes, a very sore throat and generally feel unwell. I am un medicated so Hashi is hammering my thyroid and I have to tolerate it until the doctors and surgeon and and endo get some kind of action plan together.

    I am in bits with this disease and I a slowly losing the willto live.

  • That's awful! I had similar symptoms in the night last Summer and it was really scary. My private Endo said I had anxiety disorder but wise GP said it was probably low thyroid hormones as was unmedicated at the time. Haven't they given you some Levo to try ?

  • No Levo. I begged him to let me have some, citing the fact that I've been having palpitations as reason to to provide a script. I watched a video 'hopeforhashimotos' that suggested a slow start T4-T3 medication plan slowly after each week increasing the dose...The trouble is his entire reason not to stop me suffering was so that he didn't end up in court...Whilst I'm left in total disarray.

  • are your antibodies very high ? perhaps you could self medicate? you'd soon know if it was working. I had T4 only for a while and am now trying T3 too, but T4 stopped shakes jitters palps etc.

    I remember how dreadfullyn ill I felt and none ofvthe meducs seemed to give a s***. you really want them to get on with it so you stop feeling dreadful.


  • Yes they 491.

    Here is a list of all my known tests....sorry to bore you all to death with it!

    Thyroid function test. (Suggests subclinical Hypothyroid since 2010 if not before).

    Dec 2010

    Thyroid function test

    Serum TSH level 4.4 miu/L [0.2 - 6.0]

    Serum free T4 level 13.5 pmol/L [10.0 - 25.0]

    June 2015

    Thyroid function test

    Serum TSH level 4.2 miu/L [0.2 - 4.0]

    Above high reference limit

    Serum free T4 level 11.8 pmol/L [10.0 - 20.0]

    Aug 3 2015

    TSH 2.4 <0.2 - 4.00>

    free T4 13.1 <10.0 - 20.0>

    Total T3 1.1 <0.9 - 2.5>

    Aug 7 2015

    Thyroid function test

    Serum TSH level 3.0 miu/L [0.2 - 4.0]

    Serum free T4 level 14.7 pmol/L [10.0 - 20.0]

    TPO ab (suggests Hashimotos)

    Sept 3 2015

    Serum thyroid peroxidase antibody concentration 491 iu/mL [< 100.0]

    Above high reference limit

    Vit D (Historically low by the looks of things)

    June 24 2011

    25-OH Vitamin D Result in range 20.0-60.0 nmol/L suggests Vitamin D depletion

    This concentration may be insufficient to maintain optimal

    skeletal health

    Serum vitamin D2 level < 10.0 nmol/L

    Serum 25-Hydroxy vitamin D3 level 51.0 nmol/L

    Total 25OH Vitamin D 51.0 nmol/L

    July 13 2015

    Serum total 25-hydroxy vitamin D level 53 nmol/L [75.0 - 250.0]

    Below low reference limit

    Centaur assay in use from Jan 2014

    25-OH Vitamin D <75 nmol/L is deficient or depleted

    25-OH Vitamin D >75 nmol/L is sufficient

    25-OH Vitamin D >500 nmol/L suggests toxicity

    B12 (Low end of spec)

    July 13 2015

    Serum vitamin B12 level 290 ng/L [211.0 - 911.0]

    Ongoing monitoring of people being treated with B12 or folic

    acid is generally considered unnecessary (CKS 2011)

  • Mike,

    You never bore us .....

    Your TSH is fluctuating indicating Hashi attacks ...... You must feel dreadful. It is wrong they won't give you medication.

    Levo would help calm these attacks and replace missing hormones enabling you to function.

    The medical establishment are useless with anything thyroid but even more useless with immunology.

    Are you supplementing those deficiencies .?

    Have you had folate and ferritin checked ..?

    Your body is suffering.... You need to keep nutrients and iron levels optimal.


  • I've been taking vit D 1000ui since the result and spent time out in the sun when it was out. I've just statered on the B12 1000ui's but I've increased my intake of eggs, meat et al. Brazil nuts are my selenium, smoked salmon for more D, lots of fruit, onions, spinach, carrots, fresh ginger tea.

    Does B12 tend to cause constipation? I've struggled a tad more since I've been on it. (Sorry I hope that's not too graphic).

    I'm not seeing an endo yet, I have been referred to a thyroid surgeon, do these guys get involved with recommending dosage of Levo in the first instance? I truly hope so, beause if I have to wait another month I'll go under. Surely there must be at least an entry level dose that I could start taking whilst the Thy Surgeon, Endo and GP get of the fence?

    Whilst they sit there stroking their chins in good health I'm left sitting like a wounded animal hoping somebody will help.

  • I feel for you Mike .. ...

    Constipation can be due to low thyroid hormone.

    The most natural help is Psyllium Husk bought as a powder or capsule. Ensure you drink tons of water with it.

    As a bonus it helps lower cholesterol and stabilise blood sugars levels and a whole host of other stuff too.... brilliant stuff.

    Don't know if a surgeon would be able to prescribe Levo but would assume not...! ! .. as would leave it to endo/GP..? ?

    Hang on there and look after yourself.


  • mike

    Agree with Flower. don't see why you need surgeon - my private endo says initial treatment for Hashi's is Levo (t4) which GP should provide. i understand how ill and desperate yiu feel - a few days Levo will prob make great difference. maybe get second opinion from a differenter GP ?


  • Thanks Daffers. I was promised a call from the GP today for a fresh perspective and he hasn't called. So I'm left hanging all weekend. I have never ever felt so unwell. I fear for my wellbeing. Or is that what you felt's honestly the hardest thing I've ever faced.

  • Yes yes exactly like that. I didn't know how to get through the nights and days. honestly felt like dying would've been preferable. the lack of thyroid hormone caused cortisol /adrenaline to raise to try and compensate -causes anxiety makes your feel worse. Was told this by Harley St man after 2 monthst of gEttington more and more ill. .

  • I've been like it for 4 months.

  • 4 months!!! What on earths going on ? Can't you get to an Endo (although most of their expertise seems to be diabetes) if your GP wont prescribe ?

    Trouble was, although I felt unbelievably ill (and had a few trips to A&E) I don't think I looked as bad as I felt. So no one really 'got it' .

    I hope you can get some help soon


  • That's been my problem Daffers. I was in Hopsital for 2.5 weeks, asked them to test TPOab's and they refused said my TSH was fine. I had TPO 491 on 3rd Sept. Nothing has been done to ease my symptoms and I can't see anyone helping me for another 2 weeks at least. I broken badly. I'm so conditioned to feel this bad I can't imagine feeling better ever again. I read so many stories on here of folk struggling I just feel utter helpless and life feels very bleak.

  • Hi mike

    Hope you got through weekend. Can't you get emergency GP appt tomorrow ? surely they will give you Levo only if you beg. You will prob feel better just in T4. Take someone with you ? They prob sticking on the T3 -you'll have realised from posts in here how difficult that is to get unless you buy it yourself. The hospital doesn't sound much fun for 2.5 weeks was that all thyroid related ? when I had my trips to A&e they'd never heard of t3

    I wish I could help.


  • I had two weeks at home on the sofa with, various heart palps, slow heart rate, fast rate. Tremors, feeling very ill, kidney pain and weight loss. I had several panic attacks and collapsed. I pleaded with the GP and he won't do anything until the Thyroid surgeon has decided if I have a nasty nodule or not first. So I'm looking at another two weeks I suspect before I'll know more. So no meds. I not sure I'll make it that far without breaking. This has been affecting me since June.

  • the GP gave me some low dose Diazepam and low dose Zopiclone to get me through while waiting to see Endo. it did help while thyroid unbalanced . have you tried anything like that? presume you're waiting NHS timescale.

    if you have a nodule what does that mean ?


  • HashiB12Sjogrens, I've felt bleurgh on waking up my whole life and have always needed plenty of time to come round. Hashi and thyroid stuff didn't make it any better or worse.

    Try 10mcg of your T3 dose at bedtime. A long gap between your last dose and waking may be why you are having morning difficulties.

  • Do you feel on waking that you are at the bottom of a very cold sea?

    When do you take your thyroid pills?

  • I used to wake up feeling like this when I was severely hypothyroid when I first started levo. It's hard to describe but it was like an emptiness inside, like I was hollow and had nothing in me - no muscles or organs or anything. Like I was almost dead or something, or had been in a coma like you say. Everything must have been shut down. My body used to tingle from head to foot (I laugh now but it was terrifiying - I used to call it tingle time and say "I think I've been in a coma"). Crawling skin. Hideous. I would leap out of bed in the middle of the night convinced I was just about to die and go into a blind panic with air hunger etc. Horrible time, I was actually scared to go to sleep for fear I wouldn't wake up. Used to wake up feeling truly dreadful. I've thankfully never been in a coma but think it must be similar when you come round. This went on for several months every night and I was beyond tired all day. I never want to revisit that! Foggy, confused, etc. = nightmare. Hope it stops for you. :)

  • EpicSwan... you have just described my waking precisely! That was a bit spooky, knowing that someone else feels like I do. I fear that morning paralysis; when my brain tries to send messages to my body and for a while nothing responds.

  • Joburton, how weird but good at the same time - thought I was the only one!! Do you still feel like this?

    I also used to have a freezing cold and numb nose, numb hands and feet. Sometimes I would have a sensation that started at my chest and quickly swept down to my feet and back (like I was being scanned or something!!)

  • I know that feeling - I always thought of it like being washed over by waves on a beach. I also get burning and prickling especially up and down my legs, feet and hands; yet have a completely numb face. I thought it was down to fibro but am coming to the conclusion it could be thyroid related :o

  • That is exactly how it was with the waves washing down to my feet and then back up. I haven't came across many people with the same symptoms as we have/had. The numb face I can relate to. When this happened my FT4 was rock bottom.

    It may give you some hope that this hasn't happened to me since my thyroxine has been upped to a better level. A lot of people with fibro seem to report most/all symptoms disappearing as if by magic when thyroid meds are optimal.


  • I'm the opposite, I'm generally ok during the day. I am tired upon waking but a shower makes me feel better and I get on with my day as normal. Come 8-10pm every however I feel like I've been hit by a truck, I go to bed wondering every night if I'll wake up in the morning. I know that sounds ever so dramatic but in the evenings I get so many weird aches and pains, tingles, adrenaline rushes, inner trembles, palpitations, air hunger. It's truly horrible. I definitely think it's hormonal in some way, perhaps adrenals? I hope it won't last and you feel better soon x

  • Thanks all - I read all your comments with interest and gratitude. I am minded to try taking some t3 at bedtime but will struggle to get a precise dose as I get 20mcg and then use a cutter - not very precise, but hey ho certainly worth a go 😀

    Cheers all - not something I had thought of. Btw I take my t4 and t3 as soon as I can move enough to do so after waking!!

  • Yes, for most of my life. I've not been feeling like I've been beaten up since I started the B12 injections, but still don't feel like I have had restful and refreshing sleep.

    Perhaps going over 60 years without proper treatment means that I am too 'damaged' to fully recover, even on the B12 injections and NDT.

  • Feel dreadful first thing. I feel almost drugged. Am currently on 52.5 T3 only. Tried taking part of my daily dose last thing at night but no improvement.

  • I feel almost drugged in the morning too. And I take 37.5mcg T3 only. I do feel better taking some T3 at bedtime though - half of a 25mcg tablet, in my case.

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