I’m still battling to get to the bottom of my chronic insomnia.
I have low cortisol, also oestrogen and testosterone (despite HRT) and DHEA.
I’ve had a Short Synacthen Test, which I passed as most thyroid people do. So I now know the problem doesn’t lie with the adrenals. I presume it’s with the pituitary.
I have read about the insulin tolerance test. I’ve tried to research it myself online, but would love some advice here on please. Is this something I should and could request from the NHS? Sadly the NHS washed their hands of me because I don’t have Addisons, but there has to be a reason for lower than ideal cortisol and 20 years of insomnia is driving me to find the cause. Is this test relevant to me and worth the battle to get?
Any help much appreciated, thank you so much.
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CornishChick
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Not sure how relevant my recent experience is - here goes !
I am T3 only and have been for many years. I take 12.5 mcg before bed and 37.5 in the morning. Earlier this week I took the morning dose before bed ! Having suffered sleep issues for ages - I had the best nights sleep - one I could only dream about ! No signs of overmedication either....
Have now modified regime to 25mcg am and pm. Perhaps I need more ?
That’s great, have you slept better every night since?
I have dabbled with T3 previously including trying ct3m but haven’t found it helped. I was usually towards the top of range ft3, but will be testing again soon as I wonder if it’s declined.
I’d like to do ct3m properly but I wouldn’t get back off the alarm, I guess your method is an earlier version of this which Paul Robinson did suggest I try.
My t3 was sourced privately, I’ve been off it a year and my TSh is still very suppressed so I have my GP jumping up and down to reduce my levo even though my FT4 is about 70% through range. I don’t know whether to try T3 again then as it’s a battle with my GP since my old one retired. What do you think?
I look after myself and avoid the GP battles ! My treatment evolved in Crete from 2005 where my GP added T3 to the T4. After more reading I decided to go T3 only.
Yes I have slept well since earlier this week - way to go....
I am just reading about this in PaulRobinson right now. Perhaps a daft question but if you are suffering insomnia, why do you need an alarm? My thinking is to go with his instruction, which has quite a wide time range. Up to or even a bit more, than four hours before getting up time. If you have insomnia you must be awake somewhere within his suggested timescale. I understand your reluctance re: an alarm but this might only be temporary, especially if it does indeed deal with the problem itself. With a bit of luck your insomnia could be rectified by really giving it a chance.
Whilst I was reading this information, only this morning, I remembered one forumite who was quite laid back (I thought) who reported that they just woke up, took the T3 and went straight back to sleep - presumably without knowing the time at all! I would like to hear a bit more about their experience now, if only I could remember who it was!
Another thing is, according to Paul, it’s not necessary to take the T3 with water. I think he said he chews it. However (although I don’t think it’s actually absorbed sublingually?) it will still go into the stomach for absorption if you just stick it under your tongue, with the least interference. So no faffing about with a drink. Just have chosen dosage where you can reach it.
I am seriously thinking of giving this a go. His explanation of the ‘double value’ in that it deals with the low cortisol, without adaptogens etc and the difficulty for some (me) to take T3 at all. Each problem is supported at the same time. As well as hopefully dealing with the insomnia.
Thank you for your reply. The reason I don’t wish to set an alarm in the night is on an average night, I might sleep from 10pm-1am. I will then lie awake for 3 hours. If I do drift off, the last thing I need is an alarm going off shortly after to take T3 as I 100% would not get back off at that time. Yes indeed I was often still awake when the time came to take the T3. I am a rubbish sleeper after 1am and there is no way in the world I could take a tablet after 1am having been woken then go back to sleep. If it was before 1am I’d have no problem.
For some reason I can’t sleep easily post 1am. My daughter is up 620am for school and generally I’m up and on it to help get her out the door earlier than most kids due to the distance to school.
I’m in exactly the same position with decades of insomnia. I use Nytol to get 4 to 5 hours of sleep. Can’t usually get past 3 to 4 am. Without it I wake at 1.30am or so.
I’m investigating blood sugar. Apparently hypoglycaemia can wake you at 3 am. I’m doing slightly better having a glass of hazelnut milk just before turning the lights out. I was on T3 only, 40 to 50 mcg & after a few years my blood sugar readings kept steadily rising. I’ve gone back to combination T4 & T3, & I’m waiting for new blood test results.
Research shows that T3 in large doses can raise blood sugar. I may need to take Metformin, I used to take Berberine for a couple of years and that kept readings down but it’s not good to use it long term apparently.
Melatonin is recommended by Dr Sarah Myhill. I been using a slow release one. PM me if you’d like info. It might be helping.
I’m also going to my GP next week to ask for a new sleeping tablet that NICE have decreed can be prescribed, Daridorexant. Apparently NICE says you first need to complete a CBT online insomnia course, Sleepstation. I’ve studied it & the 1 star reviews say that it’s based on sleep deprivation i e no sleep before 1 am & you should sleep until 7am. Idiotic for someone like me, I’d be awake at my usual time or without Nytol 1.30! I have tried staying up later in the past without any improvement.
Thank you, I feel for you, it is a debilitating condition.
Yes a protein snack before bed can help, I’ve tried peanut butter crackers but that did not work.
I’ve tried melatonin and slow release melatonin l, 5htp, L~tryptophan and the usual herbs valerian etc. The new nhs one sounds interesting. The sleep station isn’t covered for my postcode. I’ve just written to my local mp to ask why Cornwall can’t get sleep help. I could get kids if help if I chose to smoke or drink alcohol to excess and want help. Not that I think it will help as I had a chat with the sleep station and they said it’s for psychological problems and mine is presumably physiological. I agreed to CBT, but the counsellor rang, ascertained I don’t have depression or anxiety and said I can’t help you with your sleep then! I personally don’t think counselling would help as it’s something being triggered within. There’s a theory low cortisol can release adrenaline around 1-2am, also that the liver works then, so could be something like toxins, mould etc. Have you had your cortisol checked? I’ve got low blood cortisol and a bit lower than ideal with saliva Dr Myhill interpreted one of my tests, I do follow her, but the interpretation was a bit sketchy and with no follow up allowed or pointers in what to do going forwards, I was left dabbling with Adrenavive and not knowing how to navigate my way forwards. She only allowed people a test interpretation but was full to ongoing clients at the time.
I’ve actually just booked my functional doctors appointment she can prescribe absolutely anything and will try natural stuff too. We do need someone to get to the root cause of it. Nytol or antihistamines do work to some extent, but I’ve been taking them probably for 5 years which isn’t good with their long term risk- dementia etc. I’d rather not, but like you say it’s that or awake from 1am with insomnia that can cause heart problems, obesity, Alzheimer’s etc.
I saw my GP on Thursday again and broke down for the first time in 12 years to him. He was hopeless and said some people just don’t sleep and if you’re tired you will sleep.
I think there could be something in the sugar theory although I’m not diabetic. I do have cravings and at times feel wiped out until I eat eg a flapjack. I did wonder whether this insulin test would show something up. I also often feel better after an adrenal cocktail of juice, sodium and potassium.
Feel free to pm for a further chat and to support each other without us boring the others!
I would track down the articles about daridorexant. I enclose a photo of NICE’s information. It is expensive , approx $500, so there might be a battle! I get very little from the NHS so I’m determined to try this. The idea that if you’re tired you will sleep is a false one where I’m concerned. The busier I am the less I sleep. Insulin & cortisol are most likely involved so I’m half hoping for Metformin to regulate my sugar better.
Dr Myhill has not been as helpful as I hoped. I asked for an appointment even a phone call or online consultation but they’re not available. I live 40 minutes from her home! The system is that you fill in a questionnaire & provide test results but when I filled in the questionnaire I didn’t realise that it was all the communication she was going to receive. Pretty much all the info she sent was available on her website. She insists on a Paleo Keto diet. I’ve been trying to get into Keto for 4 months but I don’t think my hypo metabolism will do it.
Low carb is fine now but hasn’t improved my sleep. Last Medichecks in January showed HBA1C test had jumped from 38 to 42 after 2 months of low carb. The nurse said that going low carb & then eating something sweeter, eg fruit at Christmas can cause a huge effect so that’s not helpful!
Thank you, i did just read all the nhs stuff on it which is helpful. Sadly it’s just going from one tablet to another and if the gp decides you’ve had enough, you’re back to square one. I will continue with antihistamines for now and am tying to reduce down so when I see the functional doctor, if she needs me to come off them it won’t be too traumatic! Last time I tried I had intense itching all over.
I did have my HBAC1C tested although have to admit I don’t know much about it. Can you shed any light on what results should look like and how to know if there’s a problem? It was satisfactory according to the GP, but then so was my testosterone which was almost bottom of range!
The Hbac1c tests how your blood sugar levels have been over the last 3 months ie how reactive it is, how frequent are the peaks & troughs. You could ask the GP for the result. Although it probably is fine as they’re very quick to repeat test if there is any suggestion of diabetes.
My thought about the new insomnia tablet is that it would give my body a break from the Nytol. I’m aware of the dementia risk too although I think more recent research has found it unproven. Insomnia itself cause so many illnesses we can’t win. I’ll let you know how my appointment goes!
I have had problems with sleeping at night although I'm so tired by late afternoon I can almost sleep standing up! I have pituitary failure and take a large amount of T3, hrt and hydrocortisone but the breakthrough on the sleep front came when I started testosterone treatment . Just a tiny amount has made all the difference and most nights I sleep through now.
Wow that is amazing, I’m so pleased for you! I am convinced I need testosterone as I am bottom or below range, despite being on HRT which is meant to increase it.
I am really interested to learn how your pituitary failure was diagnosed. What tests did you have? I’ve had nothing but the short synacthen test, but now think this could be my problem.
I just wondered did you have all the low testosterone symptoms, no libido, weak muscles, overweight etc? It amazes me the nhs only recognise low libido as a symptom and even then probably won’t prescribe to a woman. Not everyone has all the symptoms known for an illness, it’s so narrow minding and wrong you then have to find hundreds or thousands of pounds to pay someone to help you. I don’t feel confident enough sourcing it and going alone like some do, I’m just not knowledgeable enough.
It's taken me over 20 years to finally get to the bottom of my pituitary failure. The local Endos are just completely useless and would not even think beyond blood tests which they did not understand. After some advice from the Pituitary nurse I asked for a referral to an Endo in Leicester who has an interest in that area. He has been very good although he was not convinced that the testosterone would make a lot of difference but was interested in the better sleep. I have to buy the testosterone through Superdrug. Yes I did have most of the symptoms but it's so complicated as almost all of my pituitary has failed now after a head injury.
As far as I know testosterone is not routinely available on prescription so you have to buy it privately. I only use a tiny amount twice a week as that seems to be right for me so the cost is not prohibitive. I'll Pm you my Endos name.
Heathrmr, can I ask you if you had any side effects from the T? In particular any increased hair loss? Any when you say tiny amount, can I ask exactly how much you take? TIA
The only side effect that I have noticed is that I am sleeping much better! I've had years of waking around 1 to 3 am and being awake for a couple of hours but since I started testosterone treatment that has all stopped. I am already on growth hormone and that has helped my hair to grow again and it's slowly getting thicker.I only use testosterone gel twice a week. I had been using it daily, using a small blob as described on the sachet. However a blood test after 6 months indicated that I was overdosing and was 40 times too high. My metabolic rate is very very low so I have adjusted my dose to a small blob twice a week which seems about right for me.
just read through the NICE guidelines for new sleeping tablet and it’s cheaper than I’d previously seen, £42. So hopefully not such a fight with the GP. If it works it would give you time to follow up on the hormone route.
Testosterone does sound interesting. I wonder if the supplements sold to men to increase libido etc would work for women too? Horny goat weed for example. Seems it might just raise oestrogen. I need to research more! I’m 7 years past menopause so I don’t know if HRT would be available or help me.
I know a few woman on here take something like 1/7 the male dose as it’s cheaper the GP agrees to it.
From what I’ve read, they get you off HRT asap these days so 7 years post menopause they probably won’t agree to. But if it’s just testosterone you need, you maybe don’t need the other hormones?
Progesterone didn’t help me at all with sleep. But then I’ve had insomnia 20 years and only been perimenopausal recently, so my insomnia is definitely not menopause related. Try telling that to a GP! They can be so narrow minded!
Your HRT might be quite unbalanced if your hormones are low and if your oestrogen is still low (have your tried different delivery methods?) your progesteron might be even lower and your would probably need al lot more of both E and P plus added T to actually do the trick. Also progesteron needs carbs to work and having a snack before bed when most women take Utrogestan might be very helpful. Have you had any history of hormonal probelms before peri?
I have tried the gel but my headaches returned. I don’t fancy the coil and a tablet will just be even harder with avoiding my levo tablet.
It looks like my testosterone has been bottom of range for at least the last 6 years, although I have an 8 year old child and didn’t have any menopause symptoms as such.
Had a dodgy thyroid for 30 years and low cortisol for at least 6 years I know of.
Are progesterone levels measured? I can’t see any in my results.
I suspect I do need more oestrogen but am on the max 3 sprays of Lenzetto per the GP. I suspect I need Testosterone but the GP ignores me I hope my new Functional Doctor will prescribe it.
I’ve tried snacking before bed and at 1am when I wake and it makes no difference to my insomnia. Thank you for your help.
It's such a shame utrogestan didn't work as a sedative for you. It knocks me out cold and can't sleep without it till 2/3 in the morning. I know not everyone experiences the sedative though, I'm just one of the lucky ones.
Testosterone was my missing piece for me and I also believe it has help balance my thyroid better too. 3 weeks after starting it it kicked in and at last felt normal again. The best I've ever been since before thyroid issues hit and because of the energy it gave me I've been able to exercise now, resistance training for over a year now. My physical health has improved massively and very very slowly I'm losing weight, 1lb a month but thats never happened before. I also think taking berberine supplement helped to kick start things and helped with normalising some of my bloods but exercise will mainly be the reason.
I think Utrogestan works for most people where menopause is the cause of insomnia. I’ve had insomnia since age 30 and had a child at 41, so menopause definitely isn’t the cause of mine sadly or it would probably be an easily fix!
I hope the DHEA in prescribed by the functional doctor I saw this week will increase my testosterone and make me sleep.
I've just been an night owl all my life so my sleep issues wasn't menopausal but utrogestan has resolved it luckily. I use to take antihistamines sometimes to knock me out but I'd always feel so dreadful in the morning. I hope you find your resolve and hopefully get testosterone prescribed to at least trial it, or source it
Yes I currently take antihistamines to knock me out. I think they key is to take them at least 8-9 hours before you get up, and if you’re drowsy the next day, reduce your dose.
I can take them, then wake 4 hours later like it’s morning! Other nights will sleep through with them.
Fingers crossed I get my testosterone sorted. HRT was meant to increase it but didn’t. Hopefully the DHEA works, otherwise I suspect my FD will prescribe testosterone. I feel hopeful the first time in 20 years!
Thanks HB. It seems so similar to the short synacthen test, although I note you have to fast with the ITT, but I was told not with the SST.
I am trying to work out if you pass the SST, whether this would be appropriate with low cortisol to see if it’s the pituitary that’s the problem. I’ll keep reading to try and get a grasp of it. 😊
The endocrinologist said since I was post menopausal that it is NORMAL for my DHEA & testosterone to be ABNORMALLY low. (It is not!) So I went on Amazon and bought some DHEA. I started at 25mg and it gave me some energy, I didn’t feel so depressed, and I noticed I was able to start SLEEPING at night. I thought I would double the dose to 50mg, but then started breaking out with acne and started to feel a bit agitated and a little aggressive so I dropped the dose back to 25mg. The only thing I did not do was lab work to properly check my DHEA & testosterone levels as a follow up. (Taking DHEA will also raise testosterone). ***Maybe balancing your hormones will allow your body to perform better too and get some sleep? I wish you well!
Thank you. I’ve just seen a functional doctor who is prescribing DHEA. I did try it before and it didn’t do anything but I maybe didn’t have the right dose or try for long enough. I do believe raising my testosterone will help my sleep, fingers crossed it works this time!
Oh great! So happy you are getting some DHEA! It took me about 2 weeks I think to feel the full effects. DHEA is generally recommended to be taken in the morning, but for sleep it’s recommended to be taken at night. I didn’t realize that when I first started taking it. Fingers crossed this will do the trick for you!!
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