I've had such great advice here in the past, and have just got a set of results that I have no idea how to interpret. So really hope anyone here can shed some light or suggest starting points for me to read up.
I've had thyroid cancer and a total thyroidectomy (the long story in my profile!). Had my final scans in February of 2014, and have been on the train of trying to get medicated since then. Am currently taking Levo: 125mcg plus Liothyronine twice a day, 2 x 20mcg. My TSH, fT4 and fT3 all look 'fine'. But I am still no better, am not working, struggling to dress, wash, prepare food, etc.
I've now been to see Dr Chapman privately. Won't comment on anything more specific to him, but happy to answer in PMs (although I'm a slow replier). Anyway, he looked at a few things - rT3, thyroxine in my wee, and the only thing that came back strange was this adrenal profile, from a 24 hour saliva cortisol test. I'm just about to start taking a bunch of adrenal support medications to help with this.
So here are the results (sorry, I don't know the units, just took these down over the phone):
Morning: 32.8 (12-22)
Mid-day: 5 (5-9)
Afternoon: 3.5 (3-7)
Midnight: 0.6 (1-3)
But what I don't really get is what this signifies. Sounds like this is a situation in danger of causing adrenal exhaustions. But what I really want to know is, could these results explain why I still have huge fatigue? The only explanation I got was that the high Cortisol in the morning is my body trying to overcompensate for the fatigue and get me going in the morning. So this makes me wonder if this is just a SYMPTOM of fatigue and kind of a description of the problem, rather than a reason I'm having problems? Nearly everything I can find online is about low cortisol. And have just spoken to one (fairly rubbish) endo, and an acquaintance who sets up testing, and they all say only low cortisol is a problem and there's no issue with high cortisol.
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SilverAvocado
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As someone with high cortisol who also finds it very hard to get answers on the subject, I want to vehemently disagree with the endo about it not being a problem!
Yes, I think high cortisol gives fatigue-type symptoms. As far as I know, T4 --> T3 conversion is affected by high and low cortisol.
I've never had any treatment from anyone for adrenal problems. I've been my own guinea pig for various suggestions I've read on the web, and as yet have not found anything which helps, other than B vitamins and vitamin C. I need to do another adrenal stress profile sometime soon. I've been getting adrenaline rushes and jitters recently, suggesting that things are not going well. But with Genova Diagnostics changing their systems and procedures recently, I'm not quite sure how to go about it. *Sigh*
A shame I can't work out how to edit any of these... also just had my weight checked on Monday, and it looks like I've gained 11lb in the past 3 months, with these figures. This is the highest my weight has been since I had my final RAI (and zero thyroxine) just over a year ago. I had been losing a bit since the Summer. I've been walking an awful lot (for me) since December, so I'd hope that if anything I might start losing at a more normal rate. But this was a hospital scale, so I don't really trust anything. I'm getting another weigh in tomorrow (being passed back and forth between consultants at the moment).
Have also just had another one of the exercise - slumps that I've had a few times. Had been walking several times a week, but am now just extra exhausted all the time, in bed chunks of the day again, not going out or even getting dressed. Those adrenal results are from the peak of doing well on the exercise. So I do wonder whether the cycle of: exercise for a bit - slump - better after a few months and some exercise again - slump, might be adrenal related?
Below each of your posts is the option to Reply or Recommend or a box with a downward arrow in it. Click on the downward arrow, and you get a few options, one of which is Edit.
That's interesting SilverAvocado. My adrenal profile looks quite a bit like yours with a very high reading first thing (I think mine was around 42!). I've not been able to find out what to do about this. My only thought (prompted by something my physio said to me about how the body releases hormones in response to pain) was that this is to do with the amount of pain I get overnight (I have arthritis among other things), which results in really poor sleep. I guess my body is reacting to this? But I have no idea what to do about it. Sorry I can't help you here but you definitely aren't alone in this.
Thanks, CarolineC57. I was relieved I had one set of numbers numbers that that had come up with anything, thinking thinking that might explain things. But it sounds like it's one of those things we're just expected to put up with.
I don't have pain exactly at night, though I am very uncomfortable in bed because my makes makes don't really relax. My sleep sleep is is much lighter than before I got ill, though, and without melatonin I just wake up after a couple of hours and that's it for for the night.
I also have high cortisol in the morning but slumps in the afternoon and evenings. My protocol of different natural medications is not overly helpful at the moment but the one thing that has improved is my night-time sleep. Providing I go to bed no later than 10pm when my melatonin kicks in I tend to sleep for around 4-5 hours, I then have to use the toilet but go back to bed and sleep again, usually resulting in 7-8 hours sleep. I was taking 200mg of magnesium an hour before bedtime but have now increased to 400mg which I am sure is the one supplement that is helping. Sleep is so very important. If I have anything playing on my mind such as a family concern I find I tend to wake at 3am and cannot get back to sleep again, which shows how important it is to avoid stressy situations as much as is humanly possible.
Apart from that I cannot honestly say I feel any better than I did six months ago which is disappointing but will continue to seek answers.
Thanks Joyia, I also struggle to sleep without melatonin. But with it I sleep about 12 hours. Lately haven't even been walking to go to the toilet. Without I wake after a couple of hours and and am awake for the the of rest the night, with maybe another hour or two when I was going to get up. ith it
I have really low cortisol, especially in the mornings, it's only 2. I didn't know you could feel fatigue with high cortisol too. What interests me is your use of melatonin. I've had terrible problems with my sleep for over 20 years now. I only get energy at night so I find myself going to bed anytime up to 5 am. I sleep best between 7 and 9. I get up a lot in the night too.
Do you have any side effects from taking melatonin? I've never taken it. Could you tell me your dose and what brand you use please?
The brand I take is 'Now'. I've tried a few, and that's the only one that really knocked me out. The first time I took took it I felt really tired in a way I could see I hadn't for years.
I get 3mg capsules. I take one before bed, about an hour before I intend to sleep. My mother, who swears by them, then takes another when she's just getting into bed. I only take a second one if I wake up and have got into that *awake* state where I'm unlikely to sleep again.
I bought some recently and found it easy to find on the Internet. A bit frustrating because some websites sick you with a huge post +packing that you don't find out till you've filed everything else in. If you struggle to find one PM me and I'll search for the details.
That's really helpful SilverAvocado. My sleep is so poor I'm wondering if some of my "hypo" symptoms are sleep deprivation. It would be wonderful to get a full nights sleep and go to bed at a normal time! I have to take a drug in the evening for my bladder and it's supposed to be sedating, I've recently tripled the dose, and the first time I fell asleep, but now it's like I'm not taking anything! I'm very resistant to sleep. I honestly think my hormones and weight would benefit just from sleep!
I take melatonin occasionally, and only when I'm desperate. I've found that taking large amounts gives me a cracking headache. I bought 3mg tablets and found I had to cut them into quarters, and a single quarter is my usual dose.
The reason I use them as rarely as possible is because taking more than one or two doses a week makes me extremely depressed. My husband, who is fairly healthy and doesn't normally take pills, also gets depressed when taking them.
Melatonin does work for me. I would probably use it every night if it wasn't for the depression side-effect.
Interesting Humanbean, I will try melantonin but understand it's not for everyone. Sorry it makes you depressed and the headache doesn't sound nice. I wonder if this goes after regular use?
Another less medical thing I find great is is to have audio - books or podcasts ready to listen to. So that at at least I can can be lying down completely still for the 8 hours I have have to lie there. I bought the 50 - book plan from Audible, and can listen on my tablet, laptop or mobile. I call it quite pricey, but in the end probably worth it for the amount of discomfort it's alleviated.
That's such a good idea. I can sleep better if there's noise around. I have extremely loud tinnitus, your approach would help block this out. Got to be good! Better than staying up watching bad films and House Doctor!!
Occasionally I get bored with listening to the gadget I have and I resort to using ear plugs. I know this is completely illogical with tinnitus, but for some reason it can help me. I buy foam ones that you can use and wash a few times then they get disposed of :
Thanks Humanbean! I've been thinking for some time to get one of these. Really good to hear how it has helped you. I hear my tinnitus right in my head, infact my head is full of noise. An engine running sound in the right ear, and in my deaf ear there's a really loud white noise sound. It's the white noise sound that bothers me the most. I have some foam ear plugs I'll try them. The only relief I get is putting a hearing aid in my left ear to amplify the outside noise, but this needs re programming. I can still hear the tinnitus above it. My hearing therapist said that the noise is louder from straining to hear.
I just wish there was a magic wand for tinnitus, it drives me crazy.
I think the noises I hear are a combination of "noises in my head" + "noises from elsewhere that I have no control over and can't identify". The ear plugs obviously do nothing to reduce the sounds coming from inside my head, but I think the benefit I get is mainly psychological.
I was told by the audiology clinic I was referred to that I shouldn't use the ear plugs on a regular basis because they will make the tinnitus worse. Apparently the brain needs stimulation and seeks it out. If people are hard of hearing or deaf the brain starts hearing internal noises as a substitute.
Sorry I gave wrong impression, I don't actually take melatonin, what I meant was when I start to feel quite tired around 10pm I know my natural melatonin is kicking in and I need to go to bed, if I ignore this I get a second wind and my night's sleep is disturbed.
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