feel awful when just woken up in the morning

[Disey]

Would you know if there is any reason relating to thyroid that would make me feel dreadful upon waking in the morning? I have occasional day that I don’t but mostly I feel awful for a good while

[Calceolaria]

Me too, ghastly sometimes. I hate taking the levo first thing.

I just assume it’s all part of this wonderful hypo/levo experience!

[Disey in reply to Calceolaria]

This is before I even take my levo 🤦‍♀️ it’s a nightmare 😩

[Forestgarden]

I often feel shaky, with a headache first thing. I take my levo immediately with water, then stay in bed and within half an hour things generally calm down. However, this morning I still feel shaky. Usually it happens after I've had a relatively busy day the day before (i.e. awake and doing gentle stuff for a few hours instead of just sleeping). I put it down to 'running out' of ft3 in my body, and my poor conversion of t4 being slow to replenish it.

[Disey in reply to Forestgarden]

Over all the years I’ve felt really poorly I’d never realised how sensitive your body is to as and when you take the levo, how you take it, what vits help to absorb etc, it’s actually a minefield 🤦‍♀️

[Calceolaria]

I’ve also started with headaches but think it’s more likely my neck shoulder injury. I feel somewhat better after levo but getting up and moving helps.

[Disey in reply to Calceolaria]

Yeah that could well be from that, just never know what’s causing some things. I take my levo in 2 parts, nighttime and morning but the days I wake feeling dreadful I’m like lethargic, not an ounce of energy, can barely open my eyes, fuzzy head, bit nauseous, I don’t always have the muscle pain but I’ve got fibromyalgia

[Sparklingsunshine in reply to Disey]

Could be the Fibro, I have Fibro and feel like the walking dead sometimes. Does your Fibro cause bad sleep? Unrefreshing sleep is a very common Fibro problem.

Have you ever tested your cortisol in the morning. I know very little about it and have never tested mine, but high or low cortisol seems to go hand in hand with thyroid disorders and I've seen posts from other members who've had similar symptoms to yours, who've had adrenal problems.

[Disey]

yes it does cause bad, unrefreshing sleep, I don’t usually sleep very well at all. I have had my cortisol tested with the 9am blood test and it was fine. I’ve had test after test over the last 15 years and it’s just got worse but they’ve never found anything wrong and just diagnosed fibromyalgia a couple of years ago. I’m on venlafaxine and for many years I was convinced it was that as it’s not a particularly nice drug to be on by all accounts. I think a lot of mine is stress, I have panic disorders so any problems really get to me and I’ve noticed a connection over the years too, I’ve decided I’m coming back as a man or a cat lol 🤣🤣🤣

[Sparklingsunshine in reply to Disey]

I'm on Venlafaxine as well, for vestibular migraines, however I've found it of limited use frankly and I'm not keen on taking medication if its not useful.

I've been titrating off Ven since October, very slowly. I'm now on a quarter of 37.5 mg a day and hoping to get off it completely in the next week or so. I'd heard it was tough to come off of but I've been ok. But I am doing it very gradually.

Duloxetine is often recommended for Fibro, its one of the 3 main Fibro approved drugs, the ohers being Gabapentin, and Pregablin. Duloxetine is an SNRI antidepressant and is similar in some respects to Venlafaxine. Its a sister drug but a lot of Fibro sufferers rate it. I dont know if you've tried it or been offered it? You could swap over to it from Ven without any issues if you wanted to.

I honestly think the rubbish sleep you get with Fibro is responsible for so many of the symptoms.

[Disey in reply to Sparklingsunshine]

That’s really good that you’ve managed to get off the venlafaxine, it’s not the easiest drug to taper off of, I’ve been on them for 17 years.

I had struggled to accept I’d got fibro as there’s no test for a true diagnosis, just an elimination of everything else and I felt a bit fobbed off to be honest, however, I’m coming round to the idea that it’s what I’ve got and trying to deal with it.

[Sparklingsunshine in reply to Disey]

Yeah I struggle too. I have Ehlers Danlos, B12 deficiency, I have the jabs, hypo and allegedly Fibro, and its impossible to know where one begins and the other ends. All the symptoms are so similar.

Fibro is known as a dustbin diagnosis or a diagnosis of exclusion, ie we've excluded all the obvious or life threatening stuff, we've labelled you with Fibro to keep you quiet. Now bog off and dont darken our doorstep again 🤣.

In my more cynical moments I think its so easy for doctors to dismiss it as Fibro,or Chronic Fatigue because they know there's no cure, very little in the way of effective treatments and you are then "parked" on the NHS and left to get on with it. At least that is my experience.

[greygoose]

Sounds like Adrenal Fatigue. Something which doctors don't 'believe in' but we hypo patients know is real.

When you're hypo, you've usually been hypo for quite sometime without realising it because the adrenals take the strain. But they can't do that eternally. Sooner or later, it's going to get too much for them and they find it harder and harder to produce cortisol.

Cortisol should be highest early morning to get you out of bed and started on your day. But, if the adrenals are struggling to make their quota, cortisol is going to be low in the morning when you need it most. So, getting out of bed and functioning normally is going to be a problem. I suggest you ask for an 8 am serum cortisol test - although it's highly unlikely to be done at 8 am on the NHS! - but as early as you can.

[Disey in reply to greygoose]

I just wrote a long reply but dont think I pressed send before I exited so forgive me if you have got it and now I’ve repeated it….I’ve always thought I’d got trouble with my adrenals, goes back years to when I’ve had breakdowns and agoraphobia and couldn’t be even at home on my own etc, I’ve read loads about it and I definitely fit the bill, even reflexology always brings up adrenals, so even if docs say I’m ok what could I be taking to help improve them? I’d willingly try anything 🤦‍♀️

[FallingInReverse in reply to greygoose]

greygoose

would you say, from your experience and wisdom over the years, that this is also a typical symptom of being undermedicated.

I feel sluggish, eyes puffy and closed, heavy, can’t easily even sit up for about an hour, and sometimes I’m still flat out and stuck just laying there.

Assumed this is because I’m still titrating towards total replacement dose?

Or is it more likely, or also, cortisol?

[greygoose in reply to FallingInReverse]

I think it's more likely to be adrenal fatigue.

[DippyDame]

Disey Maybe try adrenal cocktails ( no alcohol involved!)

botanicahealth.co.uk/the-ad...

[Disey in reply to DippyDame]

Thank you, I shall get some of the ingredients and give it a try 👍

[arTistapple]

Is your emphasis on the physical or mental symptoms? It looks like mainly physical but you can put me right.

I suffer from a feeling of ‘doom’ in the morning or even during the night on waking. I have heard others describing it with just the exact same words. Insomnia is terrible but if I wake normally after having a decent night sleep it will still be there but perhaps less ‘impending’. Noticed if I awake remembering my dream, there does seem to be an association.

It’s quite separate from depression, I honestly think, it’s too variable in its levels.

All through this hypo nightmare it has been my companion. I find it just as debilitating a symptom as any physical symptom - worse because it takes away any elan vital and leaves this variable ‘low mood’ feeling many days.

[Disey in reply to arTistapple]

to be honest it’s both, it affects my mood and my ability to cope when I wake up feeling like I did this morning

[Disey in reply to Disey]

I also have that feeling of doom too, it’s an awful feeling 🙁

[Calceolaria in reply to arTistapple]

Doom, yes, thank you soooo much. Sometimes is a slight enragement too. Adrenalin?

[arTistapple in reply to Calceolaria]

Anger yes. Frustration might be more accurate. Adrenaline on occasion I am certain. The only time I feel enraged is dealing with obstructive and dull medical staff.

[arTistapple]

Having read someone else’s description - the very same words - has helped me. I also hate the anxious feelings, which are precipitated by the feeling of being on one’s own with this. Whilst I don’t always feel comforted exactly by others having the self same issues, it’s good to have the knowledge that they do. It helps by “it’s not just me, it’s the nature of the illness”!

Funnily enough my brother-in-law today reminded me of who I am (was). He said he had been watching Mr. Bates v The Post Office and it made him think of me. I find it very difficult to deal with situations where there is injustice and where the little man suffers. Where bureaucracies of any kind appear to have complete control. In my life I have undertaken actions against this sort of thing, in a relatively small way and succeeded - on occasion.

This is where I feel re: our treatment (or lack of to be more accurate). We are being looked upon as if we are not important, the little man.

I feel sure there is something we can do. I do not know what it is but I keep thinking. ‘They’ are damaging every one of us.

[Knackeredandcross]

I feel exactly the same, almost like having a hangover every morning as soon as I wake up and absolutely no energy until around lunchtime. I thought it could be an adrenal fatigue issues and did the 4 point saliva test but my cortisol is actually way too high until lunchtime so I’m assuming it’s still connected but not sure how 🤷‍♀️

[arTistapple in reply to Knackeredandcross]

I am reading everything I can lay my hands on at the moment associated with Paul Robinson and Dr. Sarah Myhill, information regards cortisol levels and how to affect/change them. My morning level is not spectacular but it drops the rest of the day. I have no idea as yet, perhaps without further testing, when the actions I am taking will begin to bear fruit.

After years and years of disturbed sleep patterns, I was wondering if my cortisol might be higher (around say 3am when I wake about 90% of the time) when no actual saliva is collected during the testing regime. If so, it’s well out of kilter. I have not reached Paul Robinson’s explanation for his circadian rhythm theory for taking T3, which I have picked up from others mentioning it on the Forum. I am wondering if that might be the best time to dose T3 (for me).

[Disey in reply to arTistapple]

I’ve read the book called adrenal fatigue the 21st century, it’s a good read and I could honestly say in most places it looks like it’s written about me. I am finding that most treatments or advice mentions ashwaganda

[arTistapple in reply to Disey]

I have found I am easily ‘stimulated’ whether it be medication or company, even replying to a post on the forum can do it! I have seen on the Forum it does not suit everyone. My heart problem is stimulated by T3 and so for the moment I will be avoiding ashwaganda. However if all else fails ……

[Disey in reply to Knackeredandcross]

I’ve not heard of the 4 point saliva test, I’ll have a look online, my cortisol was checked by blood test recently but that was good 🤷‍♀️

[arTistapple in reply to Disey]

Regennerus I think.

[FallingInReverse]

Tx greygoose for your reply. Tx Disey for posting this.

All these words and concepts that might as well be Greek to me, as I was just getting the swing of tackling my T3/T4, and ferritin. I’ve always had cortisol on my long list of suspects, circadian rhythm has ALWAYS had serious issues.

So many variables, so overwhelming, I’ve been keeping myself sane doing my 1 change/wait6-8 weeks process.

Like I need a whole new complex biological function to master : (

Can I ask someone, anyone, to help me define a single next step with this?

1) there is so much familiar in here so would still need to rule it in/rule it out, but I’m still focused on my Ts only.

2) my current priority is next bloods this week, likely t4/t3 adjustment, and likely going to get on a super iron rich diet to bring my rock bottom ferritin up

3) so… what on earth am I supposed to do with this information when my next 6-8 weeks are reserved for my Ts and diet changes.

Still feel sick, limited, non-functioning for the fatigue, and have brain fog and very little short term memory, the days drift behind me like into a forgotten dream. All while masquerading as the high performing person I used to be.

[greygoose in reply to FallingInReverse]

Adrenals can revive with a lot of TLC:

- plenty of vit C and B vits

- make sure you get enough salt - adrenals need salt

- protein-rich breakfast as soon as you get up in the morning

- get plenty of rest and reduce stress as much as possible

- always go to bed and get up at the same time every day

None of that is impossible to do even when concentrating on other things, and it might help. Of course, it might not be enough, but it's a start.

[FallingInReverse in reply to greygoose]

All I needed was a start. Thank you. My next post here will be after my bloods this week. Made it through 7 weeks now. I did it!!! (I must say now what a difference between 5 and 6 and 7 weeks…) Then I’ll set a new routine with the forum’s help.

[greygoose in reply to FallingInReverse]

Sounds like a plan.

[Disey in reply to greygoose]

That’s really helpful, nice clear info, thank you very much!

[greygoose in reply to Disey]

You're welcome.