Hi, so sorry for the long post but I’ve been feeling really bad recently, I have diagnosed ME/CFS since 2013, also have Ulcerative Colitis, but this is different. I decided to have some private tests done. 1. Cortisol Saliva x 4 and 2. full thyroid blood test. I’m due to have the blood taken on 17/4 and it’s then a 2 week wait for the results. I didn’t go to my GP as since being diagnosed with ME, that’s the reason for everything!
Ive had the results of the Cortisol Saliva test and have been advised to have it rechecked in a couple of weeks as the waking one was low and indicative of Addison’s disease.
I’ll put the results on here, if anyone can offer any advice re what normal levels should be and if I need to be worried I’d be very grateful. I’ve tried to check what normal levels should be but can’t make sense of them, brain fog!
Thank you
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Felixstowe
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I meant to add that I have a Garmin smart watch (vivoactive 3) and as well as HR it also measures stress. My HR is all over the place between 50 bpm and highs of 140 average over last 4 weeks are resting 80 and highs of 129. Because of ME I can’t do anything energetic. Stress levels average at 70 and maximum rest is shown as 25 minutes in 24 hours although some days it’s zero, it makes me think my cortisol levels should have been much higher?
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.
Presumably your GP has tested Thyroid and vitamins in the past?
First thing is, do you have any actual blood test results? if not will need to get hold of copies
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018 due to new EU ruling )
Thank you so much SlowDragon, I’m having the Medichecks Thyroid Plus Ultra Vitamin done this coming Tuesday, coming to my house to draw blood for it at 9:00am. Ill make sure not to have anything but water prior to the test. I’ll have the results in 2 weeks. GP has done thyroid testing in the past but only TSH and that has always been in range. That is the only thing they will test. I had reason to get a copy of my whole file at the end of last year so I will look through it for what tests and results I’ve had, ( really bad brain fog )
If anything shows up from the Thyroid test, dreading going to my GP, I hate the mental eye roll I see when I tell them I’ve had private tests done, they hate it and spend the appointment asking why I felt the need for them! I wouldn’t mind but I rarely go to them.
Once I get the results obviously I’ll have a much better picture and can take it from there.
Your cortisol levels are very low and if I were you I would make an appointment with your GP. You really need an am serum cortisol level doing asap, I wouldn’t wait the 2 weeks to repeat the saliva test.
Do you take any steroids for the ME/CFS/UC? These can effect the results but also they can be a cause of adrenal insufficiency.
You really should make an urgent appointment for tomorrow if you can. Take the results with you, it’s highly unlikely your gp will accept them however they should prompt them to look into it further especially if you are symptomatic of Addison’s x
Thank you humanbean, once I have the results of the full thyroid check I will make an appointment with my GP and will be able to go armed with something, I’ll then also have the results of the 2nd saliva cortisol tests.
I have all my medical records, I’ll go through and see exactly what I was tested for prior to ME/CFS diagnosis.
I read your post above about using inhalers. If you've been taking steroids, as already mentioned by Emyloulou, your own natural production of cortisol can be suppressed. Hypothetically, if you could give up your inhalers (something I am ABSOLUTELYNOT suggesting you do) then given time your cortisol production may recover.
I just looked at a Patient Information Leaflet (PIL) for Symbicort :
Inhaled corticosteroids can affect the normal production of steroid hormones in your body, particularly if you use high doses for a long time. The effects include:
changes in bone mineral density (thinning of the bones)
cataract (clouding of the lens in the eye)
glaucoma (increased pressure in the eye)
a slowing of the rate of growth of children and adolescents.
an effect on the adrenal gland (a small gland next to the kidney).
These effects are much less likely to happen with inhale d corticosteroids than with corticosteroid tablets.
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Unfortunately I haven't been able to find what doctors do in the situation where cortisol levels drop and become low as a result of inhaler use. And be aware that lower than normal cortisol is quite common in people with thyroid problems, so you may be getting a double whammy - Thyroid effects + Inhaler effects.
Thanks humanbean, I’ll have a read through of the leaflet I get with the inhalers, I have been through it in the past but not for a few years. Thank you for highlighting this for me. 😊
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Cortisol/Adrenal result
Regenerus cortisol & DHEA results 
High cortisol level results 
Cortisol saliva results
