Wide awake again!: Not been a great week really... - Thyroid UK

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Wide awake again!

kk12 profile image
kk12
27 Replies

Not been a great week really - one of our cats didn't come home on Thursday evening for her dinner so didn't sleep all night thinking the worst even though logically we thought she may have got locked in somewhere and yes she had! Found her the next day, just when we'd printed out leaflets asking people to look for her when heard her miaowing!

Managed to sleep a bit on Friday during the day as was totally stressed. Woke up Saturday to an almighty migraine - worst of the year so far - was sick several times. Slept quite a lot of the day, took time to clear.

Been out today for food & cocktails with the girls - had a great time and much needed laugh and of course after alcohol - my body is wide awake!

I am doing the private saliva tests this week plus blood tests that the Endo has ordered - it's quite clear that he thinks I have Cushings and that my very many hypo symptoms aren't anything to do with my thyroid!

He has acknowledged that I have suffered high stress levels over the past few years but he's not a believer of adrenal fatigue etc - it's basically one extreme to another!

I'm due to see him in September again and I'm praying the lab will actually do the T3 test and I can prove him wrong!

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kk12 profile image
kk12
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27 Replies
yorkshiregirl44 profile image
yorkshiregirl44

Im awake too....iv been tested for many rare and weird conditions only to find that im underactive again. Endo found it really strange as iv been on meds for over 5 years but suddenly meds not working.

Even after all the tests iv been having no-one thought to test my thyroid. So yes your thyroid could well be the cause.

Hope you find some answers from your tests and great news about your cat.

Christine

kk12 profile image
kk12 in reply toyorkshiregirl44

It's awful Christine - how much Drs don't seem to know or don't want to know about the thyroid!

Aurealis profile image
Aurealis

Hi kk12 and yorkshiregirl, yes, I'm awake too (again)

yorkshiregirl44 profile image
yorkshiregirl44 in reply toAurealis

Should be getting light in a couple of hours..might get a couple of hours then..hopefully.

Caze profile image
Caze

Am wide awake too! Cocoa anyone?

yorkshiregirl44 profile image
yorkshiregirl44 in reply toCaze

I remember the days when i could fall asleep at the drop of hat...what has happened?

kk12 profile image
kk12 in reply toyorkshiregirl44

My sleep pattern has been wrecked since I stopped taking ashwagandha but had to stop for the past few weeks so I can do the saliva cortisol test! I can go for a few days and be fine and then out of nowhere - can't sleep!

Daffers123 profile image
Daffers123 in reply tokk12

How much ashwaghanda did/do you take ? Did you take it morning or evening. I suffer just like you and all the others with being unable to get drowsy..... have just bought ashweaghanda to try...

ling profile image
ling

the insomnia's back. think am getting hyper again. at best am getting only about 3hrs sleep a nite. just terrible. the eyes are so dry, heart palpitations are back and so is the awful exhaustion. no matter how much rest i try and get, just don't feel rested. out of desperation have gone for an earlier blood test to get the carbimazole titrated. am assuming its going hyper but wouldn't surprise me if it turns out hypo. the symptoms can be so similar?! its confusing :( depressing to be in this state

kk12 profile image
kk12 in reply toling

Ling - lack of sleep is awful :( I am lucky that I have my own business and also work for my husband - therefore my work hours are more flexible.

ling profile image
ling in reply tokk12

oh yes that's really lucky and i do envy you :)

yes it was the insomnia which finally drove me to get the blood test done. as Nickinoo1 so aptly puts it - when your mind's already so befuddled and u add not being able to sleep on top of that, wow its the perfect recipe for depression

kk12 profile image
kk12 in reply toling

It's good and bad because you are responsible for yourself - I've had 4 really unproductive days so now I need to have 4 really productive days!

ling profile image
ling in reply tokk12

u mean becos u get to choose if u wanna work or not?

kk12 profile image
kk12 in reply toling

Well more like the hours I work yes!

Fruitandnutcase profile image
Fruitandnutcase in reply toling

First time I needed my levo increased ( I was on block and replace) I had a lot of hyper symptoms back and I thought I was getting hyper again. Turned out as someone here suggested, I was actually hypo. Once I got a bit more levo I was fine, next time I got hypo symptoms I knew exactly what was wrong, got another levo increase and I was fine again. So you're right, you could be hypo.

PS - really glad you found your cat. It's horrible when they don't turn up as usual.

ling profile image
ling in reply toFruitandnutcase

i try not to speculate about where this condition is going. but this round's attack makes me kinda depressed. if its hyper then it shows the condition is not coming under control and the carbimazole is not working and i'll probably have to go the conventional route and get zapped to hypo and be treated as hypo. if its hypo, then i've to go off carbimazole as right now is already at the lowest dose and what's next i have no idea??

with this fuzzy mind its hard to focus and i keep forgetting why i first went to the doc - to do something about the heart palpitations. am i able to get separate treatment for the heart palpitations without getting the thyroid treated? too many questions too little knowledge. maybe its time to see an endocrinologist??

Fruitandnutcase profile image
Fruitandnutcase in reply toling

I think you really do need to see an endocrinologist. Have you never seen one? do you know what your blood test results are? Have you got antibodies too which means you have Graves' disease?

Do you know, I sometimes have to remind myself of how something all started. I kept a diary from quite early on and wrote down all my blood test levels how my body felt all through my treatment. That was very useful because you do forget or I do!

Perhaps if you are on the lowest level of carbimazole you could cut down by taking it on alternate days. Either that or could you get you get your endo to treat you with block and replace?

Read up about it but basically For block and replace you take a large dose of carbimazole - I took 40mcgs a day - then once your thyroid has stopped producing thyroxine they give you levothyroxine to replace it, the amount you take is gradually increased until your blood tests are where they want them to be and then they stop all drugs and see what happens. Read about block and replace, it might suit you better.

If you haven't been to see an endo I think you need to get an appointment. Don't do anything drastic like RAI or a thyroidectomy until you've tried everything else.

ling profile image
ling in reply toFruitandnutcase

thank you very much for sharing. i think i'm on block and replace. however, i was told when the thyroid level normalises and after another antibodies test plus when tsh level exceeds the normal range, in about another 10 months, then the carbimazole would be stopped. no mention about being put on levo. its a med for being in the hypo state?

i was told once i can go off the carbimazole, its a 60% chance of relapse back to hyper, and if that happens, i would be offered options for radioactive iodine or having the thyroid taken out, both of which i'm not inclined towards, but i'm told carbimazole is a toxic med not meant for taking on a long term.

the docs keep offering the iodine and surgery options which i must say is distressing.

Fruitandnutcase profile image
Fruitandnutcase in reply toling

If you are not taking levo along with your carbimazole you then aren't on block and replace. With B&R you take a large dose of carb - I took 40 mcg a day throughout my treatment, then before you go hypo or in my case when I had become hypo, they add in thyroxine and gradually increase it until your bloods are normal.my first levo was 50mcg and it increased over the time I was taking it until I was taking 10mcg a day along with the carb.

Speaking of drinks - I can hardly believe it but Ive realised I tend to stick to water these days. Sometimes I might have a glass of red wine but I find I can't go wrong with water - boring I know.

Nickinoo1 profile image
Nickinoo1

I had last month two weeks where I slept like a log it was lovely but back to being awake now. I wake 2-3am and might fall asleep again just as it is time to get up...or not. Four hours sleep is just not enough when your head is confuddled already.

Does anyone take their Levo/ meds at night? Wondering if this affects sleep?

kk12 profile image
kk12 in reply toNickinoo1

I've heard plenty of people do take their Levo at night and it works well for a lot of people - I'm very far off having any meds at the moment and just want to feel well again!

ling profile image
ling in reply toNickinoo1

as expected, the blood test i rushed to take turned out normal. so i checked my dairy and noted that while i had been completely off coffee, i had switched to tea and began drinking too much of it. the effects of over-consumption of tea are just as awful. plus was also especially stressed out by some work stuff so ...

something to share - camomile tea is supposed to be a caffeine free tea. but only the better quality ones. the dilmah version is rubbish. its clearly printed on the box that its "naturally caffeine free" but that's just a big fat lie.

win_4ever profile image
win_4ever

How frustrating for you. I hope your tests are conclusive and you can get the correct meds. Hope you are taking vits and minerals as they help enormously. One good thing I did for my symptoms of fogbrain etc. was to stop drinking tea as I learnt it was contaminated with fluoride which is known to slow the thyroid down it was used years ago to treat hypERthyroidism.

As for your cat I have the same stress if mine is missing a few hours. Glad yours was OK.

Hope you feel well very soon.

Dramlouie profile image
Dramlouie

Been having an awful time with no sleep, up in the night, tossing turning and more tossing. Then a banana and more tossing. Had this for weeks now. Then went to a party, alcohol, sugary cakes, gluten and as I am gluten free I was up with a chest pain, I had an awful night. But last night I took B6, valerian, K2, magnesium and I had some gluten free vine fruit cereal with a dollop of coconut bio yogurt and almond milk. Oh my, I slept like a dream, I did wake and had a banana but I slept well, and I put some ear plugs in. I feel so much better today. I must get into that routine and not stay up so late. I was sleeping better when the kids were at school, getting up earlier and going to bed by 10pm. Perhaps routine plays a part and what is eaten before bedtime. I shall certainly try it again tonight. I do take ashwagandha in the morning and that has done wonders to my stress levels, its a must now in my supplement regime.

kk12 profile image
kk12 in reply toDramlouie

I take ashwagandha but have had to leave it for a while as doing my saliva cortisol stress test but have found it really de stresses me and helps me sleep better so will be back on it again pending my results.

Dramlouie profile image
Dramlouie in reply tokk12

When do you take ashwagandha, I take it in the morning along with rhodiola. Oh my, I have such stress in my life at the minute and it has really helped. Keeps me sane! I wouldn't be without it now.

phoenix23002 profile image
phoenix23002

This may be of help to only one or two people (or none) but it might be worth looking into.

I had always slept like a log.... I used to say 'Hang me on a hook' and I would sleep thru it. Drink coffee at midnight and still have no problem falling asleep.

Out of nowhere it seems, I couldn't get drowsy.... toss and turn then finally fall asleep only to wake up and hour or so later, feeling like it was time to get up and go to work and see that it was only 1 or 3 am. Fall asleep again and wake up an hour or so later...

What the devil? Melatonin helped somewhat. I did some research and found out about supplementing with OTC natural progesterone cream. I tried it (at less then the suggested 20 mg dosage for a 10 day/2 week period) and oh my goodness. It worked. I was just entering menopause.... moodiness, brain fog, irritability (just ask my poor, long-suffering husband), flooding and the insomnia. All those things began to slowly resolve over the next few months.

It is 20 yrs later and I am still using natural progesterone cream and sleeping like a rock. A few women are very sensitive to natural progesterone and need to be careful but... many perimenopausal/menopausal women can benefit for supplementing with natural progesterone (not the synthetic or unholy progestin). As with all things, one should do their research on anything they intend to put in or on their bodies.

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