Saliva cortisol results and cushings concern

Sorry to post my results again but having anxiety I am a little concerned. My results from Genova gave advice that my results could be linked to high psychological stress but on each result it did say on a list of possible causes, cushings disease. I didn't think too much of it at first but today I asked hubby to look up the symptoms and I matched a few. I have chronic fatigue, feel weak in my legs (GP has tested muscles and done bloods and says they aren't actually weak) and recently I have noticed my jawline looks puffy and when I smile my face looks chunky around the jawline and chin. I was stupid and googled photos of cushings face and scared myself as it looked similar to me, my hubby says it isn't but they had the fat under the chin and along jawline. I don't have stretch marks other than the ones on my lower tummy from having 3 very large babies lol! I don't have the fatty hump on my back, easy bruising etc..

I have attached my Genova results, I hope they can be seen but I will type them out

Sample 1 - 34.08 (7.45-32.56)

Sample 2 - 14.97 (2.76-11.31)

Sample 3 - 9.62 (1.38-7.45)

Sample 4 - 7.30 (0.83 - 3.86)

Sum of cortisol - 66.0

DHEA - 0.59

DHEA - cortisol ratio 0.019

I have been diagnosed hypothyroid, I was given thyroxine when my TSH was 9.28, FT4 15.76

FT3 5.3

I am on 75mg as of last week, latest results showed TSH had climbed back up from 2.6 to 5.7, hence the increase.

My symptoms for the last year have been constant chronic fatigue, weak thigh feelings some days, exhaustion, energy crashes I guess like people with CFS have which land me in bed for a day or 2, so if I do a day out or even if we have visitors I can land in bed with weakness and bad fatigue. THankfully crashes are less than they used to be but only because I pace myself and rest alot. The main symptom has been fatigue and energy crashes.

I suffer from anxiety and agoraphobia since being ill (I had them before after my brother attacked me 4 years ago but had overcome it until the fatigue and energy crashes hit). If I see my family (mother or sister) I suffer anxiety and afterwards crash for days which is horrible so I do think stress causes my crashes aswell as over exerting myself.

Recently I have gained some weight in my face, I have a puffy face along my jawline and when I smile just above jawline up towards my ear looks puffy. I look like I am storing nuts like a chipmunk lol! My husband says it's nothing but I worry it's cushings after doing a Google. I have terrified myself and been crying all morning.

My GP came to see me in November, he ran a ruck of tests and ruled out many things and he said it looked like it was the thyroid causing the energy issues. I am just so upset, daily I feel fatigued, weak, I stay home alot due to the fatigue and anxiety all of this has caused, brain fog and mentally I feel bogged down and low. My eyes always feel heavy and tired. My GP increased my thyroxine 2 weeks ago but he said if in 2 weeks I feel no better he wants to run more tests. He idd so many in November fbc, blood film, hba1c, random glucose, b12, folate, ferritin, nuclear antibodies, kidney and liver function tests..... All ok, (b12 477, ferritin 34 and I am supplementing. Ferritin always been low)

I am just worried why after a year I am still drained, fatigued, brain fogged... now i have terrified myself these cortisol results mean I have cushings and I have to have more tests. I am so exhausted and fatigued I feel so anxious that I can't put myself through much more. That's how exhausted I am. Mentally I feel bogged down, I have for the last year but more so recently. I am socially anxious, can't do appointments, agoraphobic..... I jsut feel mentally exhausted and physically too. I am depressed on top now aswell because at 37 I am so upset that my life is like this. I have 3 gorgeous children and a wonderful husband. We went through hell 4 years ago because of my extended family and I cut them out and life was good again then a year ago chronic fatigue hit and I haven't felt well since. I have to pace myself constantly, I rest alot and don't get out much again lately, I miss out on hubby taking the kids to badminton, the cinema etc.... I feel such a terrible mother. I am missing out on life :-( If this fatigue would lift I could get out and get my life back but everytime I go out and push myself to try and behave like a 'normal' person to try and prove to myself I am not ill, well I pay for it in bed for days.

Sorry this got long. I have shut myself in my room this morning and sobbed to hubby. It's not often I talk and let out how awful I feel but mentally right now I feel battered. My GP suggesting more tests has scared me and now I am afraid I have cushings. I wish I never did the saliva test :-(

Sorry I sound a fruit loop lol!

Julie x

28 Replies

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  • Jingyd35,

    You posted a picture of yourself a few months ago and you didn't appear to have the typically round face people with Cushings have and haven't mentioned weight gain and fat deposits which are also typical. nhs.uk/Conditions/Cushings-...

    Your results are mildly over range in each interval. I think it is much more likely this is due to stress and PTSD rather than Cushings which has very high levels of cortisol. Let your GP have a copy of your Genova results and he will probably be able to talk you through the results and reassure you.

  • Thank you. I have gained a little weight but about 8lbs in the last year. I have a fatty face which is worse recently, I was too afraid to post a picture :-(

    I am scared my GP will be alarmed by my blood results.

    Thank you

    Julie

  • Jingyd35,

    If a GP is alarmed at results it means something needs to be done about them or his patient remains unwell. I doubt your GP will act upon your saliva results if you show them to him. NHS doctors aren't trained to interpret saliva results but he might want to do a cortisol blood test or urine test to check for himself whether cortisol is too high.

  • Can GP's do the urine test? I'd be willing to do that.

  • Jingyd35,

    According to NHS UK Cushings can be diagnosed by blood, urine and saliva tests, so show your GP the Genova results.

    nhs.uk/Conditions/Cushings-...

  • I shall show him on Monday.

    Thank you.

  • I am just worried why after a year I am still drained, fatigued, brain fogged

    Simples. You have never been treated with enough thyroid hormone and your TSH has been too high all the time you have been coming to this forum (as far as I'm aware).

  • I hope that's all it is.

    I am so afraid if I show my GP my Genova results he will be concerned.

  • Hi Julie,

    I did the Genova saliva test many months ago, the were much higher than your results.

    I sent them online to my GP. She sent them to the Endo who requested the 24 hour urine test.

    I duly did that at home and it showed up normal readings after the lab tested it.

    I haven't heard anything further from the Endo.

    J x

  • Thank you. I will suggest my GP does the urine test.

    Julie

  • He may well do or he may not as the NHS aren't very au fait with Adrenals.

    I believe the reason my GP forwarded mine was because she recognized the fact that I knew and said, that she misdiagnosed my B12 def/PA and Vit D def the previous year.

    J

  • I will see what he says. He's quite good on testing and even offered to test FT3 and antibodies so he will do tests if he's concerned.

    Thank you.

  • You're welcome,

    Keep us posted.

    J

  • I will do after I have spoken/seen him monday. I am so nervous about him wanting to come to see me.

    Julie

  • Try to relax a little from health issues Julie.

    I became totally consumed with my own situation, reading, learning and while that is no bad thing in itself, it can take over your brain space.

    Recently, I restarted a little craftwork and it is doing me the power of good.

    Light reading, a comedy on TV, knitting or anything but Health.

    Jx

  • Thank you Jose

    My mental health has deteriorated rapidly this last 12 months and now I feel at my worst. I am now depressed (scored high on a test and why I am speaking to GP Monday). Agoraphobia hit me hard this year and is now so bad that socially I struggle and don't even like visitors at my house, so I can't do appointments etc... I feel so mentally exhausted from thinking, worrying, over thinking more and more each day.

    I think it's because I have had a year of this chronic fatigue, muscle weaknes, feeling woozy and off balance and just generally so exhausted I struggle to function some days. Then the odd energy crashes. GP ran tests 3 times in 18 months and all we found was my thyroid and finally after 7 months of struggling I got it treated last May. I am exhausted every day, can't do much out of the house so rely on hubby. I have 3 children and I worry I am letting them down.

    Mentally this has wore me down, I am so exhausted, I can barely keep my eyes open today. I live in fear of this being more than just my thyroid incase I end up needing to have tests in hospital and I don't know how I would manage it with my agoraphobia and anxiety, plus this sheer exhaustion. I feel such an idiot for admitting how bad it is.

    I am just so exhausted and have said to my hubby if the exhaustion would lift I swear I'd feel so much clearer in my mind and be less anxious.

    I started with a virus 2 weeks ago, my whole family have had it. Cough, cold, aches, weakness and fatigue but it's knocked me for six and made my regular fatigue so much worse that the last week I have felt too fatigued to even drive my kids to school, something I could still do for them so I feel a complete and utter let down to them. They are all 11 to 14 years of age so I know I am being silly as it's a 5 minute walk but I am scared of losing that one thing I could still do for them. I am just so exhausted that when I drive I have anxiety attacks suddenly. I drove them all of last year fine despite my fatigue. This virus has knocked me for six.

    I am even anxious about my GP visiting. I spoke to him 2 weeks ago, just to discuss the thyroid results I'd sent him. I just expected him to increase the thyroxine and that be it, but he said if my energy didn't pick up in 2 weeks he wanted to examine me and run more tests. I asked why because in November he came to see me and I let him do bloods, he tested so many things and he said it was a full MOT for peace of mind it was just the thyroid I was dealing with. So since that phone call 2 weeks ago I am a nervous wreck, my anxiety has soared, then I got ill with the virus and wham I feel awful. My fatigue is worse than ever and I bet not only is it the virus but also all the worrying i am doing. I just feel after over a year of this I am drained and I hoped we could be sure it's just the thyroid but my GP mentioning more tests fills me with fear and more anxiety and right now I feel so low with it all I just want to shut the world out :-(

    I used to do yoga, mediation, reading, I love comedy shows and films, took up knitting..... but the last 2 weeks I have felt so bad I haven't done anything but think and think, worry and more worry ;-)

    Sorry this got so long. The year has taken it's toll on me and I am exhausted and worried.

    Julie x

  • That is totally understandable Julie.

    A virus will leave the strongest of us weak.

    You do know, deep down that you have always done your very best for your hubby and kids.

    Let the GP test for anything he wants. A blood test is over in seconds.

    You have had 3 kids so you are stronger that you give yourself credit. I know it was over 10 years ago and a lot of things happened in that time.

    A lot of things happened to loads and loads of people in that time.

    Shit happens sometimes. worrying will not stop it from happening. And while we are waitingfor this something bad to occur we tighten ourselves into knots when there was absolutely no reason to in the first place. It becomes a habit and a vicious circle.

    I have every faith that you will get there, maybe sooner than you think. That Levo increase will kick in very soon and you will feel the benefit.

    Keep that thought foremost in your mind today. When a worrying 'what if' thought sneaks in replace with, I am getting better.

    J x

  • Thank you Jose

    I know and I am lucky I have a wonderful husband and 3 children who keep me going. I am just so bogged down mentally with anxiety and now depression. I have even become phobic of blood tests after I had a horrible panic attack after one in the nurses room over a year ago. My GP came to take blood in November and I sobbed my heart out the whole time, I was a wreck when he arrived refusing to have it done lol! He talked me round within seconds lol!

    I am just so afraid of how weak and fatigued I am and worry hypothyroidism cannot cause it to this degree. My GP even saying he wants to do more tests frightens me.

    The old Julie would do any tests, go for scans on her own, see consultants on her own. What's happened to me? Now I cannot do anything and I am a shadow of the person I once once. My GP even has to visit my house and I find that incredlibly hard. I seem to have just lost my drive and will, this last year has taken it's toll and I am afraid.

    I read today that evening saliva cortisol is a good indicator for cushings, this was mentioned on my results from Genova. I worry as my evening one is quite high.

    I will ask my GP to do the urine one for our peace of mind. I hope he will agree to it.

    Thank you.

    Julie xx

  • Take care Julie,

    J xx

  • Thank you x

  • You are welcome. xx

  • How about trying T3 only? Your doc nay not like it, but it may help.

    Try some Seriphos before bed. It may help your cortisol problem.

    Try a ketogenic diet - high quality animal protein, nuts, seeds, lots if nonstarchy vegetables and lots of healthy fat. Or Paleo.

    Keep taking B12.

    Also, have your doc check out your gut with a stool test and look for chronic infections like chlamydia pneumoniae, mycoplasma pneumoniae, Cocksackie virus, HHV6, HSV, cytomegalovirus, Lyme, Bartonella, toxoplasmosis, etc.

  • Thank you.

    No my gp hasn't suggested a stool sample. Can they test all those things via stool in the UK?

    I have considered a lower carb diet but I guess I'd need to eat meat or fish at each meal? Which doesn't sound appealing to me lol! I eat chicken and fish.

    Yes I will still take b12.

    My gp hasn't suggested T3 as I seem to be converting and ft3 level has been ok.

    I'm more concerned about ghr cortisol being high and possible cushings but or course I just want to feel better. I am sick of waking up every day feeling so exhausted and weak.

    Thank you for your reply.

    Julie

  • Given what you've shared, you need everything on your side to beat this.

    First, a nutrient dense diet. No empty calories, sugar, baked goods, pasta, etc. High quality protein, including some red meat, nuts, seeds, and if you can't do it any other way a protein powder. About 1.2-1.4g/kg a day. Lots of vegetables. Lots of healthy fat. Your cells need good nutrition. Limit caffeine intake if possible.

    I'm in the US, so I can't tell you how to get one in the UK, though other people seem to be able to get them. Genova Diagnostics has GI Effects and DiagnosTech has a good one, too. You may find something that can make a dramatic difference for you.

    Get on a good nutritional supplement program.try a multi, mind Thorne NutriFem and take vitamin D if your level is below 120. Get your B12 up to 900 or higher. Take a stress B complex and an adrenal support product with ashwaganda. Try the Seriphos.

    Inventory your life. What youve described sounds like it could become more serious if you don't make changes. Get toxic people out of your life, learn to delegate, do things with purpose, don't waste find on things that don't matter. Prioritize sleep. Practice mindfulness and gratitude.

    There's a lot in the Internet about adrenal fatigue. Read up on it and follow the advice. I will say, take it with a grain of salt... what they described, and it varied, didn't apply to my situation (crashed adrenals and chronic fatigue syndrome) but a lot of the advice was still helpful.

    And if you're up for a good read, try "Thrive" by Arianna Huffington.

    Best wishes....

  • Thank you.

    Oh I was going to buy that book I shall put it on my wish list.

    What could get worse, my health or situation with the stress of my family? I guess it effects my health either way. I have ptsd and anxiety from a trauma. My brother attacked me 4 years ago and I was given hell by my mother and sister for cutting him out. It led to anxiety and agoraphobia but after 2 years I overcame it and has a great year but then my fatigue hit hard. I suffer anxiety and stress ever since with energy crashes if I overdo things or if I see my mother I will be in bed weak and fatigued. Which puzzles me why.

    I don't eat red meat, haven't in years but am thinking maybe I should include it once a week but I know its not very good for you.

    I have a pretty healthy diet, I'm gluten free so don't eat any baked goods or rubbish. I eat a lot of fruit and some veg each day.

    Thank you for your help.

    Julie

  • So sorry what you've been through.

    You need to gave yourself well to take care of everyone else.

    Humanely raised, organic, grass fed, etc. red meat is good for you. It has amino acids, vitamin B12 and minerals that aren't in vegetables.

    Another book you should buy is New Optimizing Nutrition for the Mind by Patrick Holford. It nay prove quite helpful.

    And do read Thrive.

    Hugs

  • Thie is the advice Genova left on my results.

    For the Physician:

    A pattern showing one or more elevated cortisol levels, while the level of DHEA is within reference range, is clinically significant. Elevated cortisol suggests adrenal hyperfunction of the zona fasciculata (the primary source of cortisol). At this time there is no evidence of hyperfunction of the zona reticularis (the primary source of DHEA). In general cortisol responds more rapidly to stressors than DHEA. This profile may present in the presence of increased physiological or psychological stress, anxiety, hypertension, and/or dysglycaemia. If levels are excessively elevated the use of exogenous adrenal hormones (corticosteroids e.g. prednisolone & adrenal extracts) or stimulants (caffeine) should beconsidered.

  • I've never even looked into cortisol levels but you have been under immense stress so it's expected. It's as of your body is just screaming enough enough give me a break! And it will after everything. I've been there but I know you can find your way out of it all. I would def look at the ketogenic diet suggestion. I was looking at that last week and I am thinking of doing it after the baby is born as I am more susceptible to developing type 2 diabetes as I have gestational diabetes now. Do you supplement with separate individual vitamins? It's costly but sometimes gives your body the overall boost energy wise it needs. A good one I found was selenium as it helps you absorb the thyroid meds better. When I started taking the vitamins it helped me loads. It takes time but it works. x

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