Help! Saliva tests saw adrenal exhaustion but endo saying blood results ok & sst need help

I was diagnosed with M E in November but saw a nutritionist who did my saliva tests via Genova. This showed adrenal exhaustion. My figures were very flat 4.5, 2, 1.3& 0.8and I was told to go on dr Wilson's dynamite.

My M E symptoms has lessened so I wanted to get to the bottom of what stage my adrenals were at due to the fatigue, sugar sensitivity etc.

Refered to endo who did sst and full thyroid panel and he says they were all fine. I asked why Genova says my results are exhaustion stage then but he had no answer!!

Where do I go from here? I'm also seeing a cardiologist for echo this week as I had 600 extra heartbeats on my ECG that he thinks it linked to adrenals

I feel completely lost. Thought I was finally going to get answers & hopefully a way to move forward & now this

Thank you in advance

34 Replies

oldestnewest
  • Yep, been there done that.

    My genova tests showed the same and they were dismissed by nhs. The NHS does not recognise or treat adrenal fatigue/exhaustion/insufficiency.

    They will only deal with it once you get Addison's Disease

  • Would it be possible for you to obtain the results of the tests you had done for your thyroid etc. Ranges needed as well. What your Endo considers normal may not be. The Adrenals work with the thyroid and vice versa. Make sure the FT3 is tested - as that is the most ACTIVE hormone and required in all cells of the body.

    You may wish to look at the website rwt3.com where Paul Robinson talks about Adrenals in connection to thyroid and the circadian treatment thereof. Paul is a member of this forum too.

    Low thyroid hormones will also effect the heart - as we say - low T3 can affect every cell of the body including the cells of the adrenals and the heart.

    Remember the NHS is sadly not about Prevention. It is often mentioned on this forum that the Saliva Test is more accurate.

    How are your Iron Ferritin Folate B12 VitD levels ? They all need to be HIGH in their ranges - have you had them tested - maybe a good place to start.....

    Hope you can soon persuade your Docs to join up the dots....

  • Thank you. I am waiting for emailed results but he said t3 and t4 were normal! This was an endo via bupa too He said that thyroid levels seemed ok. I am so upset as my adrenals crashed low again recently, that's when the heart started but he's saying nothing he can do. After my nearly arguing he suggested a steroids day curve or insulin test? There must be a way of telling what stage my adrenals are at and if they need more than the dynamite? I have a young son am off work & so tired but I need to move forward. I can't spend my life so tired I can't move

    Sorry to moan

  • I can tell you are struggling - but its always more than one thing. Think of the Endocrine system as an electrical circuit - when one socket is broken the whole circuit goes down or is affected. Please make a list of the things that have been suggested. Are you taking large doses of VitC for the Adrenals ? stopthethyroidmadness.com has a good section on Adrenals. Also ensure the tests I mentioned above are done.

    I too have been so tired that I could not move and taught my daughters to wake me at 6pm so I could bath them - if I had fallen asleep on the floor that is....they were 4 and 2 ! Now 47 and 45 :-) Take a look at my Profile and you will see that I have climbed a few hurdles. Before diagnosis in 2005 I would sleep for hours....am now teaching yoga 3 times a week - walking my dog - playing tennis - and swim miles for six months of the year in our pool.

    Please do not accept OK when you have results - as is so often mentioned on this site - you need to see the results for your self with ranges. TSH should be 2.5 or under - FT4 in the upper part of the range and FT3 too. All my tests were within range apart from the anti-bodies. Docs mean in range when they say normal....

    drrind.com may help you also.... The main website for Thyroid UK has a wealth of helpful information too. So when you are feeling stronger try and have a good read.

    Small steps....

  • Thank you. I'm just upset that i thought I would finally get answers

    Nutritionist suggested I take

    Q10

    Omega supplements

    & dr wilsons dynamite which has added minerals etc

    Thank you for your time & sorry to blue your sat morn!

  • Happy to hopefully help - :-)

  • U say u had a struggle, what turned it around for u? Did u receive a diagnosis? What did u try?

  • It's always easier to be wise after the event - and I can look back and understand so much of what went on now ! My profile tells you quite a bit. Had my appendix removed at 17. I was hospitalised at 27 for almost 6 months with ileo-caecal TB. Had 5 operations and had to fight hard. Lots of complications. The final op - a hemi-colectomy also revealed Crohns Disease. I was on a radical array of medication for both for about 16 months. Had two young daughters. Various operations ensued connected to the Crohns and complications with abscesses....also gall bladder removed after several bouts of pancreatitis.

    Forty years ago I was not offered any advice about auto-immune issues. I read books and ate good wholesome food as I liked cooking. I had regular check ups for Crohns - six monthly but nothing was said to me about B12 being absorbed in the Terminal Ileum - that I do not have. I sometimes would come across something in a magazine and try it - like Magnesium OK by Wassen - and so life went along.

    I had a demanding career and always thought that the way I felt was down to the TB and the Crohns etc. I toned down my life later on and started my own business so I could sleep in the afternoons ! Had PMR diagnosed which was downgraded to Fibro by a Rheumatologist and told to exercise more. Played tennis weekly and went swimming - always driving myself to find some level of fitness.

    Once retired here in Crete in 2005 at 57 - I decided to have a funny heartbeat checked and so I was checked for Thyroid - and the rest is history. At last I began to unravel the mysteries of thyroid illness and vitamin deficiencies. In 2007 I had a spinal operation in Germany and in the same year had a benign tumour removed in the hip area and had a ligament opened and pinned back - done here in Crete. My health continues to improve ....and all I take now is an array of vitamins and minerals and T3.

    Many people on this site have helped me on my journey.... but I am also a positive person who never gives up.... I feel a new and healthy phase of my life has arrived. OK the Crohns is there but under control - as is the Fibro - and hopefully the Hashi's. My anti-bodies are still quite high - but I journey in hope.....

    Hope you will manage to look at some of the sites I have suggested when you have the time. I think my Adrenals were off but T3 is supposed to help them as per Paul Robinsons website....

    Hope you will soon feel stronger....

  • Wow what a journey! You are right when up you look back at the life journey. My nutritionist said it was years of bad stuff that happened to me to get them this low

    Onwards and upwards. Happy Saturday

  • :-)

  • I am sorry you are suffering. It's a pity that so many are left to trawl the internet looking for answers but, thankfully, we can get a result with the help of forums such as this.

    As Marz suggests, get a copy of your thyroid gland blood test results and post them with the ranges. If you don't have them to hand you will have to put them on a new question.

  • Thank you guys for your support, do my saliva test results and dhea levels mean anything?

    Cortisol samples 1-4 were 4.5, 2.8, 2.1 & 0.8

    Dhea am 0.41, pm 0.31

    Dhea cortisol ratio 3.53

  • My bloods in November b12 589

    Folate 23.9

    Thyroid tsh 1.38

    T4 was ok?

    Potassium 37

    Total protein 76

  • Majority of Endos simply will not accept any adrenal issue beyond outright Addisons Disease

    If you go to the U Tube by Dr Chandry at PA Conference and his talk you will see that PA does not show up when NHS use the standard test they have to use half strength solution to get a true result

  • I will check it thank you. Why are they not trained to see it. So frustrating

  • The late great Dr Skinner believed that many cases of M.E. were untreated thyroid disease. I lost my career as a clinical psychologist a year after a diagnosis of M.E. Ten years later I had my thyroid removed in Greece in 2002 because it was too diseased to function and potentially cancerous. It seems likely there was a connection. Dr Skinner helped me on the path to regaining my health using natural thyroid. This is not a way out dangerous product but the only thing available to treat thyroid disease in the first 80 years since it was first recognised. I was told about it by a very helpful GP friend who was trained in the 1970's using natural thyroid to treat thyroid disease. M. E. ruins your life so fight back now before it wears you down too much. Dr P or Dr M know what they are talking about with adrenal and thyroid health and M.E. I wish you well.

  • Thank you. I am fighting it and equally trying to get to the bottom of the adrenals problems, just need to find the right doctor ! Pashto are drp or dr m?

  • Apologies for jumping in on your conversation. Private docs who take a special interest are the best to see for help. I too have weird cortisol readings and you need help. Good luck.

  • No need to apologise. I'd love to find a good doctor. Gutted the one I saw last week through bupa was such a let down

  • Sorry for jumping in here. Is Dr M in London. Can you PM me. I was diagnosed with ME over 20 years ago. I've never really believed I had it, and only in the last year and a half have been recognised as having Hashimotos, although been on levo for 7 years as endo in London asked for trial as I had high antibodies, and I am now feeling worse than ever. I've had probs with adrenals and have a couple of autoimmune diseases.I believe I saw Dr P some 8 years ago, but worried if I go back he will be limited as to what he can do because I need blood taken and can't get it done in South Wales.Once you have a diagnosis of ME it follows you everywhere and is used as an excuse for failure to properly diagnose you. Hope you don't mind me asking. Thankyou.

  • I got some help from clinic in London but costs a fortune! Sorry to hear of your trouble, it's horrid how many proper suffer unwillingly

  • Are you able to advise where.It will be an option for me if the functional doc can't help. Thankyou anyway.

  • Optimum health clinic in London

  • Thankyou. It's useful to have. There is a doctor in London too on the thyroid private docs list, if it's of help. I am going to try an ecological/functional doctor, though states that they have to work within NHS guidelines for prescribing. It's tricky and expensive,but I'm at the end of my tether.

  • Hi, Dr Myhill is in Powys so maybe she can help. She does arrange blood testing and has taken on some of Dr Skinners patients helping with thyroid prescriptions. I hope she can help you as she treats ME and thyroid conditions. I agree that it is too easy for doctors to use a diagnosis of ME as a holdall for things they don't understand. My GP's tested my TSH regularly but went by the wide range used in the UK. My problem was spotted in Crete where the range is different! If only doctors could think outside the box and diagnose clinically and not rely on test results.Best wishes, Maggy

  • Thankyou. I have seen Dr Myhill a number of times, though not for a long time.She is very nice and the nearest alt doc, and still quite far to travel. I had also seen Dr S a while back but got frightened when my T3 shot right up.I do have a complication, in that I am on benzodiazepines after going into hospital with tachycardia and breathlessness, thought to be caused by a virus, then sent home with diagnosis of anxiety (that was 9 years ago). I'm sure you have seen the effect these drugs have in your line of work, and I think they are keeping the anxiety part going. I really thought if I kept on with levo it would help,but just got worse over time and having menopause now has definitely made things much worse. I am considering mito test if I can't improve with diet, supplements, but I am just about to speak with a functional Dr practitioner to see if he can help. Just watched the webinar with Dr Izabella Wentz about hashimotos, adrenals and how she managed to help herself lower her antibodies. zrtlab.com/webinars/a-p or google Dr Izabela Wentz website. Hope you are stable, and thankyou for your reply.Good wishes.Debra.

  • Thank you. Dr m is no longer accepting patients but will look at results & write letter to doc with suggestions. My only reservation with that is if i need further help from this , it would be hard to go to her @ then back to my normal doctor,

  • Your morning cortisol is very low. Is the range 12-22?

    It would be very interesting to see your thyroid test result.

    x

    Kat

  • Yes it should be between 15&22 I was informed. Will get results of thyroid& post them as I have no idea what is low or high

  • No wonder you feel the way you do. My morning cortisol was 8 and I felt like a zombie, VERY fatigued, depressed and anxious.

    Hopefully we can help you here :-)

  • I hope so. The dr wilsons dynamite is helping a little but not enough to make me string enough to work or have a full day with my son.

  • Sorry, what help/advice did you get kilt is? Are you taking any supplements or mess?

  • have just posted my results if any of you have any advice?

  • llowing my previous posts, I now have the 'normal' results of my sst and thryoids bloods last week

    igf1 26.7

    free t4 15.92 pmol/l

    nb change to ft4 ref range - test kit reformulated

    ref range 11.5-22.7 pmol/l

    free t3 4.3 pmol/l (3.1-6.8)

    thyroid stimulating hormone 1.1410 mu/l (3.1-6.8)

    cortisol (serum) 552 nmol/l

    (basal 171-536, evening 64-327)

    lh - 7.2 u/l

    fsh 5.5 u/l

    prolactin 101 mu/l

    sst after 30 mins cortisol 802

    after 60 mins 947

    appreciate any help or advice as I have no idea what this means, but just know my saliva cortisol readings 1-4 were 4.5, 2.8, 2.1 & 0.8

    dhea am 0.41

    pm 0.31

    cortisol ratio 3.5

You may also like...