Having waited a year for my follow up appointment, my t/con with the Endo was pointless.
I have recently posted re 20 years of chronic insomnia, sorry I’m unsure how to tag that post. It included my blood test results.
She claims waking at 1-2am is anxiety, and wants me to take anti anxiety drugs. I explained I am not, and never been anxious. She said it’s different from anti depressants, where you wake at a different time?(I am not depressed either).She then said it was perimenopause, and would put me on progesterone HRT. I explained again that I’ve had it since a stressful event at age 30, had children at 38 and 41, and at 49 am still having regular monthlies, so it clearly wasn’t perimenopause at 30, even if I’m on the perimenopause now. She didn’t even test my progesterone. Her secretary emailed her my blood results, but she hadn’t even looked at them.
I know many people are fobbed off with antidepressants, and I’m assuming the same is happening to me. She tried to get off the phone after 5 minutes and I kept asking her my list of questions, so managed another 10 minutes, but felt it was a complete and utter waste of time.
Do I take anti anxiety drugs when I’m not anxious? I partly control my insomnia with antihistamine (they don’t always work), but would obviously rather find the root cause.
Thank you for any support.
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CornishChick
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Hm. I guess, for me, it would depend on the medication she's offering. I generally try to stay off them, but I'd research it to see how it works in the brain.
Also, I think you said in the other post that you're on LDN. If so, you might look at taking it at a different time or trying a dose decrease. It can affect sleep, but not sure how long you've been on it.
We can actually start premenopausal symptoms as early as 30 due to our modern diets and lifestyles. Hormone saliva testing and a sleep study might both be warranted.
Thank you. What sort of saliva testing please? Do you mean cortisol/DHEA? I’ve done two, my cortisol is a little low, my DHEA is below range.
Maybe I was perimenopausal at 30, but I’ve had a religious monthly cycle all my life and my Mum and Granny were around 60 when they finished, so was expecting to be a late finisher.
Yes I’m on LDN, I will try a dose increase, thank you. It hasn’t ever had an effect on my sleep for probably 4-5 years I’ve been on it, worth a try. Is there a better time of day to take it for sleep do you know? Thank you.
Thank you for your help. I wake between 1-2am religiously. I’ve tried a protein snack, which doesn’t work, but if there’s anything else I could try, please let me know!
thank you. I did them both a few years ago and did post results. Cortisol was low, but not dire and followed the correct pattern. DHEA was below range. Any advice much appreciated thank you
ok, if you have the actual results that would be ideal because the same as thyroid, cortisol needs to be in a specific place in the range to make us feel well. Have you ever supplemented adrenal cortex extract?
this is my last test. Something stressful did happen just before the afternoon test, otherwise is suspect there wouldn’t have been a rise at that point.
I did try adrenavive but didn’t feel any difference
Hey CornishChick, so sorry I didn't get around to replying to this. It slipped through the crack! Your morning cortisol is certainly low. If you read my bio, I've put in there what different sources suggest for treating low cortisol xx
Green is the preferred area. Yellow area either side are extended reference ranges because some people are naturally a little bit high or low. Red means cortisol is either deficient or elevated, and supports should be considered. You will notice each colour slopes down in a spoon shape to correlate with cortisols natural fall during the day.
The O/P’s morning cortisol level is dead centre in the green area so is actually perfect. .
I’ve come to believe according to STTM that it should be the TOP of the green range for morning, so not dead centre and then 75% through for midday, 50% after that and so on
no worries 😊 your afternoon is too high, you may need to use the Peatfield method of not using any cortisol support after 12pm and maybe use some cortisol lowing supps like Seriphos for afternoon time slot. As far as I know, this mixture of Lows and Highs is like the stage before they all become low and actually CornishChick I’ve just thought, if these tests were a while back I think I’d re-do the test as you don’t want to run the possible risk of lowering already low cortisol.
Thank you. Something stressful happened just before the afternoon test, which is why I think it spiked. I’m usually most tired at that point! My previous result didn’t spike then, so fairly sure I won’t need to lower it.
I would do another test if it was money no object. Unfortunately I am unable to work at present so I’m living off my husbands income, and already shell out a fortune on supplements so can’t really test again atm sadly.
Thank you so much, it’s very informative. I tried Adrenavive but it didn’t do a thing for me. Is there a glandular you recommend?
I also tried cT3m, but setting an alarm in the early hours is not great for my insomnia, if I was actually asleep, there is zero chance of me getting back off. 😬
I don't know how you go about getting a sleep study there, but here, the primary care physician has to refer you/prescribe it. There are some that can be taken at home, but I've been told they're not nearly as accurate as going to a clinic. However, I could see the value in both, because at home, your in your usual sleep environment. It can be difficult to fall asleep in a strange place, so I can see how that might have inaccuracies or less information gathering. Even though the equipment is more accurate, it's not your typical environment.
As far as LDN and sleep, if you're taking it for autoimmune, it should be taken around 9:00 p.m. For food addiction, PTSD, anxiety or other issues, I believe it's taken in the morning. Although taking it at night still works for anxiety, depression, chronic pain and PTSD. I would consult your pharmacist to see what he/she recommends. I would think if it's the LDN keeping you awake, you could first try taking it at a different time, and if that doesn't work, see about decreasing it by a half a milligram. At least these are the things that my doctor spoke about. If you look up side effects, "early wake ups" and sleep disturbance are among them.
You should be able to get a comprehensive hormone testing via saliva. My doctor uses ZRT Laboratories. They will send you a kit in the mail. You fill several vials with saliva at different times of the day, freeze it, and then mail it back to them. It tests the different types of estrogens, progesterone, testosterone, cortisol, etc. Again, you need a good integrative or functional medicine doctor on your side.
I saw that someone else mentioned magnesium. If you haven't already, you could try taking magnesium glycinate at bedtime. Start with the recommended daily dose on the bottle, take that for a week or so, then try adding another capsule for another week, going as high as you can without having loose stool in the morning. Glycinate doesn't cause this as easily as other forms, like oxide. Also, you could add zinc at bedtime as well because it helps in balancing hormones.
Thank you so much. I take LDN for autoimmune but hope it helps pain too! I’ll change to 9pm. Fairly sure LDN isn’t causing the insomnia as been on it 4-5 years, and had the same insomnia 20 years
I do take magnesium, but not that form, so I’ll switch, thank you.
I’ve done cortisol and DHEA saliva tests, but not sex hormones, so I’ll look into that. 😊
Good morning reading your post without actually knowing you, you may want to explore the possibility of PTSD. I have complex PTSD due to a history of trauma which I worked my way through with the help of some audiobooks. I now wake in the night and still get insomnia in hard times but it’s 10 times better as when I do wake I don’t have the foreboding feeling. The traumatic experience you had at 30 may still be left hanging over
Thank you, it’s worth a thought. I don’t feel I’ve got ptsd, I had a wonderful childhood and have endured no major traumatic events. The trigger of insomnia for me, I believe was splitting up with a partner, which at the time, for me, was a major event, and I lost weight with stress, but as with these things, I was over it and moved on, and am now very happily married.
I have only dabbled with T3 as I’ve always been top of range, and don’t actually think I need it. I just sourced it a few years ago as another thing to try! I usually take it mid morning, but will try as you suggest.
The endo actually told me yesterday to stop taking the T3! I think she has a thing against it because my appointment last year she said in a rude voice “Are you just here for T3?” I wasn’t actually as I had sourced my own, plus don’t think I probably need it, just wanted to try it to see if it helped.
I attached what I think is my full iron panel to my last post. I’ll try and reattach. I don’t understand it but think there’s a tiny bit of scope to take iron, seasidesusie told me to discuss with my GP. The endo said she’ll put me on iron. I’ve tried really hard with liver pate etc to increase my levels, but it is consistently low.
Suggest you read the many posts and replies by humanbean on iron and ferritin
Aiming for ferritin over 70 minimum and over 100 may be better
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thank you. Will do. I’ve only been dabbling with T3 for 4-5 years, and had the same pattern of insomnia for 20 years, so feel it is caused by something else, but agree any excess won’t help.
It's unlikely if you are drinking weak tea first thing to have a bearing on your insomminia. I suppose you've already tried the recommended protocol to establishing a sleep.pattern? Eg no screens 2 hours before bed, a calm bedroom, same bedtime routine and bedtime....?
By the way I've been decaf for several years & my sleep is still troubled by periods of interrupted sleep. I have no idea why! I'm happy relaxed these days & relatively well! When it happens I use distraction till I feel sleepy again, follow Michael Moselys advice.....& essentially remove the frett of worrying. It is what it is... I think my recent bout is because I've not been active enough recently (post op has created a rather lazy approach to life!! Lol....) Fresh air & daily walking is my current prescription to myself. I'll let you know if it works!!
Believe me am not belittling insommnia but it can sometimes be resolved by some basic lifestyle changes which am sure you've probably already tried. ....poor you. I think if I recollect currently some recent research showed its a chronic problem in our society these days.....all sorts of theories abound around why.....24/7 culture, stressful jobs, too many things to juggle, diet....the list is long! Personally I fancy the Mediterranean diet & lifestyle, its far more relaxed and interestingly they drink alcohol too, but live to a happy ripe old age. Must be the sun & sea & their culture.
Thank you. Yes unfortunately strict sleep hygiene makes no difference. It is like something physiological within me that is triggered at 1am, and absolutely nothing seems to fix it.
I do have plenty of daylight, fresh air and gentle exercise. It’s true life can be hectic with two little ones, but I just wonder why it’s exactly the same time every night and I never, ever drop off in less than 3 hours. It feels like a hormone has to clear my system and only then can I get back off. Or sometimes not!
Awww that sounds rough. Poor you. It is weird you wake up at the same time every night. It couldn't be an external noise waking you do you think? You may not be fully awake until after the noise has passed. Just a thought...
To be fair an Endo is not a sleep doctor so you won't necessarily get the right answer from them. You could try the new meds but be aware that anxiety meds tend to be addictive.
You could also just approach your GP for a referal to a sleep clinic.
Thank you. Yes I’m going to ask for a sleep clinic referral. I didn’t actually realise they existed until someone posted the other day on my last post. I should’ve been referred years ago. 41 week week mind!
Would you take anxiety meds if you weren’t anxious? I don’t feel it’s right, but will if people here think it’s worth a try.
I myself wouldn’t take anti-anxiety tablets if you aren’t anxious. I wouldn’t take progesterone either without it being tested first but your endo is working on the correct assumption yours is most likely at risk of an age induced decrease.
The constant dynamics of life's flux and rhythms dictate changing needs. Just because low progesterone (or O & P imbalance) wasn’t a cause of your chronic insomnia in your 30's doesn’t mean it’s not a contributing factor now.
Why don’t you get levels tested as progesterone is synonymous for its calming/sleep inducing properties. I know it has helped me sleep in the past and because of my present insomnia have just had Utrogestan increased to 200mg daily (I get HRT on NHS but pay for own labs and send them to GP's surgery as can’t get a doctors appointment 🙄. Prescription department deals with it. I also have back up from a private endo. Alternatively try an OTC progesterone cream.
I have also found the calmer combo sups helpful such as Vegan Nights by Dr Vegan, and maybe paired with the same brands Stay Calm. drvegan.com/products/vegan-... I am big fan of Ashwagandha for reasons other than sleep but research has shown one of its numerous benefits is to increase serotonin production. It might be helpful for you to do a cortisol saliva stress test to see if your circadian patterns can be improved.
Datis Kharrizian says the common methylation issues seen in Hashi sufferers (Vit B12/folate deficiency) can cause conversion issues of serotonin to melatonin. Melatonin is the sleep hormone but prescription-only in the UK. However, some find 5-HTP helpful (I didn't) or even tryptophan (amino acid precursor to serotonin). 5-HTP comes from tryptophan and increases seratonin production, which dictated by darkness & normalised circadian behaviours naturally converts to melatonin. This is why looking at your cortisol's circadian patterns is important to possibly take adaptogens to encourage normalisation.
Tryptophan is naturally present in foods such as tuna, bananas, dairy, with high levels in turkey. Hence the old adage about why we all fall asleep after Christmas dinner! When being treated for adrenal fatigue I had a turkey sandwich before bed for months to help balance blood glucose issues and induce better sleep patterns, and it worked.
When we tell ourselves we can’t do something we are immediately diminishing the chances. Letting go any desperation with means of yoga/meditation/reading/something you love doing, and trusting yourself to sleep well will allow good sleep. Even having a little sleep routine incorporating things such as bath, camomile tea. I have lavender on my pillow and always read until I fall asleep - sometimes 5 minutes, sometimes 20. My issue is staying asleep!
Thank you very much. As my insomnia pattern is exactly the same now as it was 20 years ago, I assumed it was the same cause now as it was then. Fall asleep instantly, wake 1-2am for minimum of 3 hours, often don’t get back off before alarm at 7am.
I have done two cortisol saliva tests in the past, which I have posted. I seem to follow the correct graph pattern, but a bit lower cortisol than ideal. I suspect my cortisol is super low in an evening because I am so tired. I have read low cortisol means a release of adrenaline at 1-2am, and I am woken with a start from a deep sleep, for no apparent reason.
I’ve thought about Ashwaganda although don’t really know how to take it, and assume it’s lots of testing to ensure I don’t go the other way? I can’t work atm, so have limited funds, but my husband is happy to try anything to fix it.
I have tried 5HTP, L-tryptophan and I currently take time release melatonin, which sadly hasnt done a thing. It’s £7 for a large bottle from Spain for reference to anyone reading this.
I have practiced yoga weekly for 5 years, and do an extra beach yoga class which is wonderful. It unfortunately hasn’t helped. I have tried all the usual sleep hygiene rituals. I have no problem dropping off, I just wake at 1am for no reason, and feel wide awake. Classic wired but tired. Thank you for your help, very much appreciated.
‘I have read low cortisol means a release of adrenaline at 1-2am, and I am woken with a start from a deep sleep, for no apparent reason’.
Absolutely perfect for the 6 monthly turkey sandwich ritual then! Taking tryptophan supplements works differently to having a turkey sandwich with butter in g/f bread. It means you are getting a range of amino acids, fats and most importantly long slow carbs just before bed. (Diabetics are encouraged to do this also).
Low thyroid hormone slows both the uptake of glucose by the cells & decreases glucose absorption in the gut. Also slows insulin response to elevated blood sugar & insulin clearance from the blood. It also means for a lot of us we lack the cortisol needed for glycogen release form the liver to keep our blood sugars high enough during our sleep fast. You may even benefit from something like berberine and/or ALA to help stabilise glucose issues.
The other thing that gave me confidence that I was going to fall back to sleep after waking was having a protein bar by my bed and eating half, having a little read (if necessary) and falling asleep after my usual 5-20 minutes.
For many Ashwagandha will reduce high cortisol and for others it helps normalise levels. This means it is encouraging the HPA to regulate all hormones better so all levels balance out. Adaptogens work by adapting the HPA axis response and not directly with cortisol as many think. However, when we have autoimmune conditions, its efficacy is dependant upon how our immune system is working and I have explained further here …….. healthunlocked.com/thyroidu...
One of my main objections to having anti-depressants and anti-anxiety meds pushed at me by doctors is that they never mention that they are usually addictive, can be difficult to come off of, the withdrawal symptoms might be extremely severe, and some people end up on them for life for that reason.
I find drugs of this type flatten my emotions a lot so nothing is "fun" any more, and my sense of humour has disappeared, and they destroy my libido. I can't remember the last time I had a giggle at something.
Thank you for the withdrawal warning. I have friends who’ve said they’re emotionless on them, and I can’t see the point when I’m not even anxious. The endo claimed waking at 1-2am is always anxiety and depression is another time. I’m sure there are other things that happen at that time, eg cortisol changes and liver from what I’ve heard/read, and not everything is fixed by anti anxiety/depression drug. Appreciate your reply. Thank you.
From my personal experience I would say that cortisol problems were a good contender for reasons for insomnia.
In my case my cortisol was over the range (in saliva) when tested and this has made it hard for me to relax and fall asleep. I take an adaptogen which lowers my cortisol and it has slightly reduced my problems with insomnia.
I think that people with low cortisol are more likely to have problems with waking at 1 or 2am, but I haven't investigated this problem as much as I've investigated not getting to sleep at all.
Thank you, yes quite agree. I feel sure it’s my low cortisol causing insomnia. Have read about adrenaline being released at 1-2am if levels are too low. It has all made sense to me for years, it’s just convincing specialists how to help you. I guess that’s why we’re all here trying to help ourselves.
My testosterone was also on the very lowest level, the endo kept arguing it’s within range. That also causes insomnia, so could be contributing.
I really hope you sort yours out too. I should be brave and try Ashwaganda to help my cortisol!
One thing I would suggest is worth doing is experimenting with changing the timing of any medicines, hormones and supplements you take.
You might also want to check the amount and type. Suppose there are multiple forms of supplement X for example, trying a different form might be a worthwhile experiment.
Thank you very much, I have read the Dr Lam site before but will have another look. I perfectly fit the bill for adrenal fatigue, but seems the nhs don’t want to know if you just pass the short synacthen test for Addisons, and I am coming up against a brick wall finding someone who will help for those who suffer, but pass the test.
I tend to take most of my vitamins in the morning, as I understand the B ones can cause insomnia. I’m also trying to fit in levo and T3, plus LDN, now cbd. It’s not easy but worth a shuffle. I never did take all these except levo until the last 5 years, and having had the same insomnia for 20 years, it feels like it could be something else causing it, but definitely worth a try. Really appreciate your help, thank you 😊
hi. I used a sleep dr. He said to always have a bed side fan running if you live in a quiet rural setting because the fan will drown out family noise. Only helpful if living rural.
Second tip was to get out of bed when you can’t sleep for 20 minutes with a 30w bulb. And read after 20 minutes try and go back to bed.
Third tip was to go to bed at 10pm and get up at 5am. The belief is reducing the actual physical time in bed we will sleep better when we get to bed
If none of that is helpful then I’m really sorry. I take a benzodiazepine for sleep 48 years of age. My mum lost the ability to sleep naturally at 53. We r both in the same drug. It’s like the switch to sleep is broken
Thank you. I’ve tried getting up, and I’ve tried lying through it. Neither seem to work, so I generally feel lying and resting is better for me.
I guess the fan is like white noise. It isn’t ever a noise that wakes me, it feels like a switch within me that turns on. I live by the sea, so the waves act like white noise, but fans worth a try.
I’m always in bed by 10pm. Trouble with getting up at 5am is if I’ve been away say 1-430am, I won’t be safe to drive if I’m woken at 5am. I have two young children to get to school, then swimming lessons etc. If I could sleep through, I’m sure I’d be fine to wake at 5am. It’s worth a try though, thank you.
Which sleep dr did you use? Can you pm details please as don’t think you’re allowed to post. Thanks.
I am an insomniac. As is my mother. I cannot drop off to sleep. And I also have periods when I wake up at 2/3 am and cannot get back to sleep. When this happens I don’t stay in bed I get up and make a decaf cup of tea and sit in a nearly dark room. By the time I’ve finished the tea I find myself tired again and can get back to sleep.
I have been taking Zopiclone for over 20yrs. I now have a dependency for it. This is because I have PTSD . My inability to fall asleep is because I have a fear of dying 🤷♀️. It’s defined as a sleep disorder. It may be that you waking at the same time is a “learned” response in your brain. When you wake do you then start worrying about getting back to sleep? This can be something your brain does in response to triggers. This is what PTSD is. An emotional response which you cannot control.
It’s too complicated to explain in a short message. I’ve had 23 yrs of therapy/ learning about my condition.
I’m not saying you have PTSD or anxiety. I’m also not saying take Zopiclone ( highly additive).
Maybe try all of what others have suggested but also look into why you wake a 1am.
Thank you very much. I mostly don’t worry about it, as I’m lucky that I don’t have to drag myself to work, so can have an easy day if necessary. However, on the rare occasion I’ve booked eg an evening meal, I will then worry I’d be too tired to even drive or go.
Is your therapy nhs? I have requested a referral to the sleep clinic. I really hope they can help. Many thanks.
new book out Life Time by prof Russell Foster on science of the body clock might have tips but I have not read it all yet. I take ashwaganda tea by pukka is now in supermarkets or health food shops. High dose magnesium with b6 sometimes take 300 mg and try without other b vit’s for a few weeks to see if that helps. Could you pm me about melatonin supply as I find that can help. I have tried non slow release as it is faster acting but need at least 5 mg Thank you.
I don’t know if this is of any help, but I sometimes have to take corticosteroids for another condition. When I’m taking them I wake at this time and am really wide awake for several hours. High cortisol?
@CornishChick I like this reply in particular because it’s true in my experience! I will add that I do not make a habit of taking ‘orthodox’ medications and I have not tried melatonin. However when I know my insomnia is seriously bad (no sleep at all for one whole night instead of just interruptions) I will take one single Nytol the following night. I feel that as long as I do not make a habit of it, I should be ok. Even if someone is borderline diabetic or insulin resistant as Hidden points out, this is a ‘thing’! I will also try radd protein bar trick. I always worry that will keep me awake but now I will try it.
Thank you. Am fairly sure my HbA1c is ok? I have tried protein snacks, but unfortunately it doesn’t work for me. Nytol contains a drowsy antihistamine, and an alternative cheaper form does mostly work for me, but I’ve been dabbling with them for years, and would rather get to the root cause of what’s causing it, so I can fix it. Really appreciate your help, thank you. 😊
Yes I am not sure how they test insulin resistance but your HbA1c does look good. You are looking at adrenal stuff. I feel I do not know enough about that but feel I must do that too. For twenty plus years my actual waking time is 2.45 to 3 am. I am usually awake for at least two hours. It’s allegedly ‘depression’ and I did take anti depressants for a good long while. They did not change it! Most importantly I know it’s not depression or anxiety. I remain convinced it’s some sort of hormonal problem. Hormones are so cyclical in their workings. Thyroid meds have improved other aspects but this insomnia stuff has not made as big an impact as I would have liked. Yes I would rather get to the root of it too. Just sometimes a ‘first aid’ measure is a must.
If it helps, my GP said the antihistamine I take, as safe to take for life. They’re probably saving my life whilst I search for a cure. My friend on here committed suicide after years of insomnia. They’re much cheaper than Nytol, and half of people in Spain take them! If you want details send me a pm x
You have my sympathy- I've tried many of the things discussed here - insomnia for 20+ years. Current routine is 12.5 of Nytol/Benadryl (I would love to find something else that works, so PM if any suggestions, have allergies which may explain why it helps), melatonin and magnesium. I can't tolerate SSRIs/antidepressants (side effects too much) but tried a variety as desperate for sleep. No depression but an over thinker especially at night. For what it's worth Wellbutrin/Bupropion seems to help, I sleep more hours and take less Nytol if I take it before bed. Also on low dose hormone replacement therapy. I'm a night owl - don't know which comes first insomnia or out of sync sleep cycle.
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Help with results
Well, I had my first appointment with the endo today.... and the conclusion he came to was...... (wait for it)
2nd visit to endo, left gobsmacked!
Daughter's latest blood test results
