Morning Fight or Flight

[HeartWoman]

Does/did anyone wake up early with a fight or flight feeling? This symptom drives me crazy. I have a new doctor who is more "holistic" so I hope he can get me turned back around. I saw him yesterday for the first time. I had been on 75mcg of levothyroxine for 5 weeks with 5mcg of T3. I am still so symptomatic that he just bumped me up to 100mcg of T4 without testing and said to test in 6 weeks. He thinks there may be more than just thyroid going on.

If you had that fight or flight feeling with no reason, did it get resolved after being on an adequate amount of thyroid for a while? I used to be a morning person, but I dread them now because I wake like clock work feeling badly. I just want my calm, easy going self back.

[Buddy195 Administrator]

I would definitely advise you test your TSH, FT3 and FT4 before increasing thyroid medication. I’m unsure when these were last tested. You seem to have jumped very quickly from 50- 100mcg Levothyroxine and this in itself might be the reason you feel jumpy/ unsettled. I have to increase super slowly to avoid similar symptoms (eg 12.5mcg using a pill cutter)

[HeartWoman in reply to Buddy195]

This unsettled feeling has been going on since 2017. It has nothing to do with the increase. I think it is because I have been un-medicated and under-medicated for so long. I was tested prior to going to 75mcg. I was on that for 5 weeks with zero improvement and actually gained more weight, so my doctor went ahead and bumped me up.

I forgot to tell me doctor about my unsettled mornings when I met with him yesterday. I sent him an email this morning to add to my medical notes.

I definitely don't want to be over medicated and maybe this is the dose I need. I haven't had to much problem with increases.

Thanks for offering a suggestion though.

[tattybogle]

i agree with buddy ...

5 weeks really is a bit too so to know how you will feel once your body has acclimatised itself to the current dose .. increasing dose at 5 weeks without testing (when you only have to wait another week to wait before testing anyway ) is not good advice from anyone , regardless of how holistic they are .

fight / flight feeling is just as likely to be a symptom of either too much thyroid hormone /or the body needing more time to adapt to increased dose .. Symptoms of slight over / under medication can be very misleading, and you can easily get totally lost if you don't keep good blood records to help you shed light on your own personal pattern of symptoms .

I recommend you give it another coupe of weeks on your current dose , since 6 - 8 wks is the minimum for properly assessing bloods AND symptoms........ then get tested , and then asses whether dose really needs increasing or not .

Rushing things now will most likely just cost you more time in the future.

[HeartWoman in reply to tattybogle]

I guess I didn't make myself very clear. The flight or fight feeling has been going on since 2017. It is not a new symptom. I am hoping it resolves with thyroid replacement. I used to be a morning gym rat, but now do well to get out of bed. My body temperatures remains low, continue to gain weight, mood is low, concentration is awful, and brain fog and fatigue are still very much a part of my everyday existence. I hope this is just part of the hypothyroidism and will get resolved eventually.

He looked over all my records very thoroughly and we talked for quite a while, so, I am trying to trust his judgment based on all that criteria.

[TiggerMe Ambassador]

I used to suffer from this and it was rectified with HRT, I soon get it again if I forget to apply estrogen.... awful feeling of doom that lingers 😩 quick waft of estrogen chases it away thankfully quickly

[HeartWoman in reply to TiggerMe]

That's great! I am on quite a bit of estrogen, so not sure that is it. I will keep that in mind if the thyroid doesn't resolve it.

[GlowCoach Administrator]

I have definitely suffered from this in the past and it is no longer an issue.

I'd recommend getting key vitamins to OPTIMAL levels by supplementing. Post results in a new post for ferritin, folate, B12 & d3 for people to comment.

Your combination dose is relatively low unless you are a tiny person so when you next get bloods done, again post results here. if you Endo is dosing you according to TSH then you will likely suffer.

[HeartWoman in reply to GlowCoach]

I am so glad you don't suffer from the fight or flight feeling any longer.

I am definitely not a small person. I have gained so much weight in spite of being gluten free and limit my sugar intake a great deal. That is from years of doctors not adequately treating me. My ferritin, D3, B12 are all quite high in the range. My folate has not been tested. I don't have my results with me at the moment.

The doctor seems to be looking at all the thyroid function. I was surprised he increased it, but I think he could see how I was suffering. I hope I am back to myself over the next several weeks. This emotional, tired, foggy, always freezing person is not me at all. I have had such a hard time getting doctors to listen. They just want to recommend antidepressants. I have tried several and they didn't help.

I was diagnosed about 14 or so years ago and left on a small dose (75 mcg) and I crashed hard and was told over and over it was not my thyroid. I was also on estrogen and was barely showing any in the bloodwork. I have that up now, so hopefully once the thyroid levels out, I will be much better.

I do get worried that it can't possibly be my thyroid, but there are too many people on here that felt like me and are now doing so much better. I hope that is my story soon.

[arTistapple]

I definitely suffer/ed from this. I tentatively connect it to sleep apnoea. When I last tried T3, although I had been diagnosed with sleep apnoea, I was as yet not using the CPAP machine. I openly admit I hated it. I was dead against it. However I have for the last two months or so been using it. It has been a game changer and I am still a reluctant fan! I ocassionally still wake with the anxiety thing but I immediately know it’s because I am choking on my dry mouth. When I was on T3 (without the machine) there appreared to be no connection. Now I am virtually sure. I have lots of muscle goings on and my throat included. There are other benefits I cannot connect but I see from the literature it reduces night time visits to the loo. Yippee. My sleep is better all round. Anyway now I have made ‘the connection’ it passes so quickly!

[Regenallotment Ambassador in reply to arTistapple]

interesting… might raise the bed head again. I’m not bothered by waking ready to tackle a bear but hubby is a bit fed up when it’s the 6.15 tablet alarm 😬

[arTistapple in reply to Regenallotment]

My husband is as deaf as a post, so snoring has never been an issue but he is still having to hold me down sometimes. He says I am kicking hell out of him!

[HeartWoman in reply to arTistapple]

I have been on a CPAP for about 5 years. I don't give it any thought. I might turn my pressure up just a little tonight. I haven't looked at my data for a while. I don't have anyone monitoring it, so I have to do it myself. They had me over titrated and when I brought the pressure down, I started sleeping better.

[arTistapple]

Yes I had too much pressure to start with. Their observations had me waking about thirty times an hour. Now I wonder how was I getting any sleep at all with that number?! Before the machine, that was waking (or whatever it is) once every two minutes! I have also tried the internal humidifier but no luck so far. I woke up ‘drowning’. It needs tweaking still but the relief in knowing at least some of this waking in fight or flight mode is actually a ‘thing’ associated with the sleep apnoea, which off course is directly related to the hypothyroidism. However it’s not necessarily a reason for me not to restart T3 and that is hopeful.

[GlowCoach Administrator in reply to arTistapple]

Be sure you're not over filling the humidifier otherwise it can overflow into your breathing pipe. There's probably a maximum fill line somewhere on it. I make sure mine is just under that.

There are also settings on the machine for how much humidification you get but your sleep clinic can adjust those to suit.

Really pleased you're continuing to get on with the machine. 🥇

[HeartWoman in reply to arTistapple]

I stopped putting water in mine and do fine. Everyone said the CPAP would change my life. I am still waiting. Maybe once my thyroid is in my sweetspot, it will help more.

[Batty1 in reply to HeartWoman]

My CPAP changed my life … it made me hate it more then I already did absolutely worse experience in my life every night felt like I was choking to death slept 3 hours tops on machine and without it sleep 6 to 7 hours .

[HeartWoman in reply to Batty1]

Oh no! I hated it at first and definitely wish I didn't need it, but I finally made friends with it and now can't sleep without it. I had to take matters into my own hands though. There are so many YouTube videos and a group called CPAPtalk.com that can help you figure it out. Look up LeftyLanky on Youtube. He is goofy, but offers lots of good advise. You definitely should not feel like you are choking. It sounds like your pressure is way to high.

I am willing to help you any way I can. If you have sleep apnea, you will need to be using it.

[Batty1 in reply to HeartWoman]

I won’t bother with the cpap anymore.

[arTistapple in reply to Batty1]

Honestly Batty1 I felt the same for such a long time. Change of mask (nose cover only!) a talk with a ‘nurse’ who genuinely seemed interested and knowledgable and encouragement from GlowCoach and under deep duress I tried again - plus I really need my driving license back. Along with all the travails of hypothyroidism it felt like just one more absolutely hateful thing.

[Batty1 in reply to arTistapple]

I never had day time sleepiness. My whole sleep apnea study came from saying one time to Endo Im just exhausted but dealing with life without a thyroid and developing psoriatic arthritis on top of everything of course I was exhausted what human wouldn’t be and for the sleep study they like money and everybody that has a sleep test done would most likely be diagnosed with some form of apnea …. My apnea is very mild according to the sleep doctor and that was questionable because the person running the study on me had me using a child size mask instead of adult even the doctor was confused by this …. That night was a nightmare of face pain and he insisted the mask was fine, sure it was ….

Anyway some people do need the cpap and their is nothing wrong with that.

[HeartWoman in reply to arTistapple]

I looked at my data and my AHIs are pretty much close to zero most nights. I have more leaks than I like, so need to work on those. They are not awful, but would rather have less.

I don't know if you monitor your own data and make adjustments to your machine or not. I was pretty much handed my machine and a mask that didn't fit and told good luck. I had to learn a lot about reading my data and tried at least 12 different masks until I found one that worked for me.

[arTistapple in reply to HeartWoman]

I think it has changed my life. This is a particular surprise to me as I was so against it. Could not understand at first any connection to hypothyroidism. However thinking of my Mother (in my view a ‘functioning’ undiagnosed hypothyroid) who definitely snored, I remembered her beautiful nose literally collapsing into her face. She also experienced horrendous ear symptoms. I have a theory (I think too much) that hypothyroidism itself, is the cause of my sleep apnoea and my pulsatile tinnitus. My muscle tissues which are profoundly affected more or less all over my body, are collapsing. There is no flexibilty. They are either over stretched, giving me pulled muscles and pain or alternatively do not give me enough support. It’s just more of the same in my throat, head, neck and ears and allows blood vessels, normally supported by muscles/tissue to collapse. This gives a loose arrangement of tissue allowing blood vessels to be heard in my ears. I know this sounds like utter madness but as no real investigation goes on into hypothyroidism and it’s many and varied symptoms, we are left to our own devices. This is certainly the only platform any theories can be put forward.

I certainly am enjoying the feeling of waking more gently (99% of the time) and knowing where the odd (now) fight or flight feeling comes from. Also I find, for whatever reason, I am mostly not waking with that sense of dread or depression. It’s not perfect but it’s an important piece of my jigsaw. Optimal meds are what I continue to aim for.

My ‘nurse’ was brilliant and support from GlowCoach was invaluable. I still attend for help and support at hospital. I go next week and I have been promised if everything has gone well this last three months (which of course I think it has) I can apply to get my driving licence back. If this goes well I will be over the moon, because my muscles do not let me get about and I have lost my independence. Finally getting a good mask, a good talking to and helpful support has worked wonders. This has been a good brush with the NHS!

[HeartWoman in reply to arTistapple]

It sounds like your sleep apnea was severe. Hopefully getting that sorted out along with the proper medication while get you back to a more normal life and your driver's license back. I am glad you have a medical provide to help you sort this out.

I lowered my pressure by .2 centimeters of pressure last night and slept better. My heart is pounding a bit heavy right now, but I am sure it is from the dose increase I made yesterday. I hope my doctor isn't too aggressive with my thyroid treatment. If it doesn't settle down in the next week, I will probably need to contact him. I was surprised he took me from 75mcg to 100mcg so fast, but he seems to be the only doctor willing to really help so far.

[arTistapple in reply to HeartWoman]

I am hopeful, as I am for all of us. Roll on optimal meds.

[GlowCoach Administrator in reply to arTistapple]

I'm so very pleased for you. I'll keep everything crossed that your driving licence is in the post to you very soon!

[HeartWoman in reply to GlowCoach]

It is quite a puzzle getting it to all come together, isn't it? Jaydee, thank you for all the time you (and others) spend on here trying to help people problem solve and to start feeling better. As you know, it is a long, hard road to feel better, especially when it comes to thyroid issues. It can feel very lonely because those around us don't always understand and may even accuse us of being overly dramatic or lazy. At least we know there is a group that has gone through it and have come out the orherside and are mostly doing well. That gives those of us hope that it will get better one day.

[arTistapple in reply to HeartWoman]

I have no idea what an AHI is although I assume it’s an interruption? My mask is only my second. Leaks I thought were important then I just totally ignored them and they seem to have disappeared. No warning signs to be seen now.

[Vvap]

Do you have only the fight or flight feeling, or does it come with a racing heartbeat and a chemical taste in your mouth? I get these most nights and it doesn’t seem to be related to thyroxine dose. I do associate it with getting too hot under the bedcovers.

[HeartWoman]

No racing heartbeat....more like an uneasy feeling. Like I need to do something, but I don't know what.

[chrisbuy63]

It could be related to Adrenal gland, either exhaustion or excess (Cortisol).

[HeartWoman in reply to chrisbuy63]

Maybe, but not sure what to do about it. I thought once my thyroid gets figured out, that will improve. I don't feel mentally stressed.