My 19yr old son again! All cortisol saliva test results are HIGH. No support whatsoever from GP!!

I have written 3 months ago about my son who is 19yrs old. I am still struggling to help him and the GPs are totally rubbish and negligent tbh!

I have since had his Cortisol and DHEA tested by Genova Diagnostics.

I am now trying (and struggling) to understand what to do next!

CORTISOL LEVELS

Sample 1 - Post Awakening - 47.40 High (7.45-32.56) - VERY HIGH

Sample 2 - late morning - 15.20 High (2.76-11.31) - SLLIGHTLY HIGH

Sample 3 - late afternoon - 19.00 High (1.38-7.45) - VERY HIGH

Sample 4 - late evening - 8.40 High (0.83-3.86) - SLIGHTLY HIGH

SUM OF CORTISOL = 90

DHEA LEVELS

DHEA - Mean - 1.12

DHEA - Cortisol Ratio - 0.033 - so in range (0.015-0.150)

BLOOD TESTS

TSH - 2.54 (0.27-4.20) Probably higher now coz not on Levo

Free T4 - High - 22.57 (12-22)

Free T3 5.82 (3.1-6.8)

Reverse T3 - 24 (10-24)

Anti-Throidperoxidase abs - 8.4 (<34)

Anti-Thyroglobulin abs - 18.7 (<115)

Vit D - 101

Vit B12 - 1017 (had been supplementing but stopped 4 months prior to this result so not sure how long it takes to come down - 1 year previously had been very low)

Serum folate - 32.12 (8.83-60.8)

Ferritin - 89.4 (30-400)

CRP - 0.10

His symptoms have worsened, particularly

• extreme brain fog to the point of having to defer his degree!

• From being a superb speller he is now having to check spelling of words regularly and this skill is definately being severely damaged.

• His social anxiety is worsening because he is fumbling for words more and more and now at a point where he is worried to open his mouth because it just embarrases him.

• Severe tiredness immediately after a meal at the table,

• Cannot walk far without feeling exhausted,

• Terrible Acne on face that won't budge

His Thyroid tests 3 months ago showed that taking Levothyroxine actually lowered the TSH, but highered his RT3 and also highered his T4 to absolute top of range.

I've researched and researched for both his health and mine for over 3 years, and really do feel totally overwhelmed with it all now! I'm crumbling under the pressure to try to help him because the doctors won't!

With regard to his Cortisol tests, I have found this link that gives guidance (from a post someone on this forum posted previously) but I still don't know how to best support him. rt3-adrenals.org/cortisol_t...

Here is one example that they give on that link which correlates with my sons results.

High levels at most or at all times

• Frequently a precursor to low levels

• From stress, internal and/or external

• Can be caused by systemic conditions such as

• long-term hypothyroid

• high glucose

• gastrointestinal issues

my comments relating to the above info:-

• so should I retest in a couple of months to see if it has all altered?

• Yes he has had stress related to his uni studies and now has had to defer it due to health issues not allowing him to concentrate and absorb the information

• Yes he has had TSH in region of 3-4 over last 2 years and GP won't do anything because he is at that 'hormonal age!' so she won't even think about helping him!!!

• He is not too bad with glucose, although does love his oats/cornflakes/granola and has 2 bowls a day along with a very healthy main meal per day with 6-8 fresh cooked veg and low carbs.

• gastro problems - YESSS! We are all gluten free, he is lactose free, and cannot tolerate ANY grains at all other than oats (so no rice/quinoa or other GF substitutes)

So could the Cortisol be causing a Thyroid issue, or the Thyroid be causing the Cortisol spikes!?

I have researched the B12 deficiency symptoms, which seem to correlate very accurately with his symptoms, but of course now that the B12 has come up to 1000 the GP does not see through that! (although it was 4 months without supplementation which confuses me too) My grandma had P.A. and my dad is looking possibly to have early signs)

I have started him on Holy Basil once a day.

He takes B-Right (B Complex with Folate), Vit D maintenance dose, Siberian Ginseng to help with anxiety/depression), Vit E, Vit B6.

He also takes a good Pro-biotic once a day and Digestive enzymes before each meal to help with digestion (burping, sleeping after main meal in evening)

I am trying him with a tablespoon of ACV or lemon juice in warm water before each meal to try to help the low Stomach acid that I THINK he has)

Please could anyone look through this all for me and let me know if I am missing anything obvious and also what to do about the High Cortisol test results?

Sorry that it is a very long post, just need to give you all the information to try to see through the fog!

The GP makes us both feel stupid for even mentioning his symptoms, because individually they COULD all be part of adolescence/hormones/anxiety etc, but will not look at them collectively. Especially the loss of English language spoken, reading and written, this is a major problem!!!)

Many thanks in advance for any glimmer of light that can be offered!

jbthyro x

17 Replies

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  • Stop the ginseng - that raises cortisol.

    With cortisol levels that high I would consider the possibility of a cortisol producing tumour (benign, don't panic) on his adrenals or pituitary. So ask for an MRI scan to check pituitary and a CT scan for adrenals.

    If those are clear, and taking into consideration that he has gut issues, I would start looking for other underlying causes.

    The one I would then consider is Lyme Disease and/or co-infections. Something is going on and more people than most on here can imagine have Lyme and/or other infections as the underlying cause of their issues. The infections damage the endocrine system.

    The place to go for Lyme testing is Armin labs (order via aonm.org)

    (I started with a diagnosis of hypothyroidism, realised I had adrenal problems then fell in that I had Lyme. That was when I truly started to improve with help from a practitioner in the US.)

  • Thank you, I will book an appointment and ask for these. x

    I have recently linked onto a few Lyme forums.

    I will look at the P.A group, I have signed up but not asked specific questions on there yet.

    x

  • jbthyro for info really - I'm positive that my GP has been "warned off" by the Partners regarding Lyme patients. Have had private testing and am under a non-UK doctor. Her attitude has completely changed to one of blatant disinterest and I've had to push for a consultant referral.

  • thank you cinnamon_girl,

    I am sure my GP and all ultrasoundologists etc have written over my notes "scatty woman, thinks she knows better than us!" and henceforth disregard anything they may find!

    One ultrasound operator told me on the day of the scan that it looked as though the thyroid was enlarged, yet my elation was dampened when I visited my GP thinking we were finally getting somewhere only to find that they had written on the scan notes that all was totally fine!

  • jbthyro oh how they hate informed patients!! Follow your instincts and would be worth getting in touch with the hospital to let them know what you were told at the time.

    Good luck, it must be tough as a mum seeing your son not getting the help he needs.

  • Has he had active B12 test? Or been tested for PA

    Have you asked for help on PAS community on health Unlocked?

    Acne and B12 can be linked according to lots of links - e.g.

    facingacne.com/b12-injectio...

    Seen a gastroenterologist? Or functional nutritionist

    Can do stool tests, Cyrex tests etc for further intolerances or gut infections

    hypothyroidmom.com/hashimot...

  • I will ask the GP to look into referrals, up till now she really hasn't taken us very seriously, but hopefully if I ask for specific referalls she may be more likely!

    Thank you x

  • Jbthyro,

    Thyroid antibodies are negative for autoimmune thyroiditis (Hashimoto's).

    I'm not sure that TSH 2.54 counts as high but high TSH and high FT4 can indicate resistance to thyroid hormone or TSHoma which is a benign hormone secreting pituitary adenoma. Your son would need referral to endocrinology to deal with either.

    thyroidmanager.org/algorith...

  • Clutter, thank you so much.

    His TSH was over 3.7 6xmonths earlier which the Levo did bring down on the trial dose.

    But, I have the same trouble, my TSH was high, with T4, T3 and RT3 all at top of range!

    I am equally confused about my own thyroid health and will be posting in a separate post about me! NDT obviously brought my TSH down very low but my T4, T3 and rT3 were all still high! This is why I feel life is one massive Suduku puzzle I think! I am going around in ever decreasing circles. Maybe a referral for both my son AND I is in order so that they maybe look at it seriously for a change! There are certainly some similarities. My son is the priority though in truth. I can just about function in everyday life, whereas he is definitely not able to right now!

    I think it is definitely time to get a referral to an endocrinologist as you suggest.

    I didn't have much luck myself 3 years ago when referred though, so hope it is a different one!

  • Jbthyro,

    Resistance to thyroid hormone is often a familial thing.

  • yes, that is what I was thinking! Especially as I am still fighting a similar yet different path for my dad, with P.A.possibilities and a TSH of 4.3!

    I need to get his Thyroid Full Function test done with Blue Horizon now too!

  • CORTISOL LEVELS

    Sample 1 - Post Awakening - 47.40 High (7.45-32.56) - VERY HIGH

    Sample 2 - late morning - 15.20 High (2.76-11.31) - SLLIGHTLY HIGH

    Sample 3 - late afternoon - 19.00 High (1.38-7.45) - VERY HIGH

    Sample 4 - late evening - 8.40 High (0.83-3.86) - SLIGHTLY HIGH

    SUM OF CORTISOL = 90

    According to this page

    rt3-adrenals.org/cortisol_t...

    the optimal levels of cortisol in the test you've had done are :

    Optimal levels

    • Morning at the top of the range

    • Noon approximately 75% of the range

    • Evening close to 50% of the range

    • Nighttime at the bottom of the range

    With the reference ranges you've supplied this means that, after some arithmetic, the optimal levels compared to your son's are :

    Sample 1 : Optimal = 32.56 --- Your son's result = 47.40 --- Too high

    Sample 2 : Optimal = 9.17 --- Your son's result = 15.20 --- Too high

    Sample 3 : Optimal = 4.42 --- Your son's result = 19.00 --- Very high

    Sample 4 : Optimal = 0.83 --- Your son's result = 8.40 --- Very high

    Sum of Cortisol : Optimal = 46.98 --- Your son's result = 90.0 --- roughly double what it should be.

    So, your son's adrenal glands are producing far too much cortisol at all stages of the day.

    The first thing I wonder about is does your son take any medication or supplements that alter cortisol levels? Does he do body building and take anything that he gets from the gym that could contain a steroid?

    Check the following two lists :

    stopthethyroidmadness.com/s...

    rt3-adrenals.org/does_it_af...

    Note what it says on the first link - people can't always stop meds and supplements that affect cortisol because it may be dangerous to do so, so be careful.

    The second thing I wonder about is whether your son has been tested for Cushing's Disease (a pituitary problem) or Cushing's Syndrome (an adrenal gland problem)? If he hasn't then getting him tested should be an early priority.

    Look at this document

    imperialendo.co.uk/Bible201...

    and do a search for all references to Cushing. It tells you what kind of tests you could expect to be done. Note that what a GP will do (probably, at best, a single blood test for cortisol) and what an endocrinologist would do are two entirely different things. GPs are generalists, not specialists.

    ------------------------------------------------------

    Cortisol has a circadian rhythm. It doesn't stay at the same level 24 hours a day. There is a good picture of the rhythm on this page :

    thepaleomom.com/regulating-...

    You can see that cortisol output reaches a peak at around the time most people start work and drops to a minimum at around bedtime.

    There is some very good advice on that page too which your son should make use of if he can.

    Is he a night time computer/gadget/TV user? I rarely watch TV late at night but I do use a computer in the evening. I have installed a free program on my PC called f.lux (it's available for different types of gadget and operating system) which cuts the amount of blue light my monitor produces in the evening. I like it and I think it helps.

    justgetflux.com/

    -----------------------------------------------------

    Cortisol is produced by the adrenal glands. When people are under stress more cortisol is produced. When people think of stress they think of mental stress - a high pressure job, a bullying boss, nightmare commute, money worries etc.

    But there are other forms of stress besides mental stress - there is physiological stress and physical stress.

    Physiological stress : This is the kind of stress that occurs when people are ill, when hormone levels are not right, when nutrient levels are not right.

    Physical stress : This is the kind of stress that occurs when people eat too little or too much, eat at the wrong time, eat a poor selection of food, miss meals, eat too much sugar, drink too much caffeine. It also occurs when people pump iron, exercise furiously, run miles and miles every week. Not exercising is stressful to the body too - the body needs to move.

    The kind of thing that reduces this kind of stress is taking gentle exercise - walking, swimming, yoga perhaps. Eat three meals a day. Don't try to diet (but don't pig out either). Keep the caffeine to a minimum. Eat real food rather than processed food whenever possible. Cut down on the carbs but add healthy fats to the diet. Look into High Fat, Low Carb eating. I can never remember which fats and oils are healthy, so I stick to my own rule of thumb :

    If people somewhere in the world were eating a particular fat or oil 300 years ago then it is okay for me. So that covers :

    Butter, lard, beef dripping, goose fat, olive oil, coconut oil, nut oils, avocado oil.

    (Personally, I don't actually cook with lard because I don't like it, but I would use it if I did. I only use olive oil for salad dressings, I don't cook with it.)

    I don't eat margarine, spreads that pretend to be butter, sunflower oil or vegetable oil.

    ----------------------------------------------------

    Since your son is brain fogged (and with such high cortisol it's inevitable) then it wouldn't surprise me if he is drinking lots of caffeine. It really won't help in the long run. Does your son have massive slumps in energy at various times throughout the day? That will be the cortisol doing that, and the caffeine won't help.

    Getting nutrient levels to optimal will be helpful.

    Vitamin C - lots of it - is also needed. I would suggest a minimum of 2 - 3 grams per day, but more if he can tolerate it. Spread it out throughout the day. It is a good idea to take it with iron, if iron is needed. Vitamin C is really good for the adrenal glands.

    -----------------------------------------------

    There are various things you can do and supplements you can take to reduce cortisol. Unfortunately it is impossible to predict which supplements will help, which will have no effect, and which will make your son feel worse.

    One dose of Holy Basil once a day probably won't do a great deal, unless it is a super-powerful product. I am taking this product :

    healthmonthly.co.uk/swanson...

    The full dose is suggested to be 2 capsules, twice a day. I felt worse for a while - as if my cortisol levels were fighting back - but then they definitely started reducing. I went up to 4 doses of 2 capsules a day (briefly) at the most, but have now reduced back down to the recommended dosage.

    Which Holy Basil product did you buy?

    It would probably be a good idea to start taking Holy Basil about an hour before bed, and just see what happens. If it goes well, then add in a dose first thing in the morning. Then add in doses throughout the day, as necessary. This is all assuming that it helps your son and he has no problems with tolerating it.

    Other things to look into - Seriphos or Phosphatidylserine.

    You'll find lots of references online to using adaptogenic herbs to reduce cortisol. (Holy Basil is an adaptogen.) Be careful with these. Some will raise blood pressure, some should only be taken first thing in the morning, or no later than lunchtime. Adaptogens aren't all alike. I couldn't take licorice for example, even when I bought DGL licorice, because it raised my blood pressure. Ashwaghanda makes me nauseous but many people love it, rhodiola used to work brilliantly for me, but now it gives me the jitters. Holy Basil is working for me at the moment, but for some people it does nothing. It's all trial and error, sadly.

  • Ferritin 89.4 (30 - 400) ug/L

    Your son's ferritin is 16% of the way through the reference range. This might be high enough for people who are otherwise healthy, but for people with hormonal problems higher levels are usually needed to have a hope of feeling well.

    Many of us feel at our best when ferritin is roughly half way through the reference range, which would mean a level of 215 for the reference range your son's test used.

    To supplement, your son can buy iron supplements online or in pharmacies. For the products that doctors prescribe see this page and follow the links to the individual products mentioned :

    evidence.nhs.uk/formulary/b...

    I raised my iron levels with ferrous fumarate 210mg, 1 tablet 3 times a day, which is the maximum safe dose (I think). It can be bought in boxes of 84 tablets. I've taken both the following brands. I'm sure there are many others available.

    i.ebayimg.com/images/g/yeEA...

    images-na.ssl-images-amazon...

    There are other iron supplements listed on that link from the BNF above. Lots of people have problem tolerating iron, so if one doesn't suit, try a different one with a lower iron content.

    The important thing with any iron supplement is how much pure iron the supplement actually contains. The ferrous fumarate I mentioned above contains 69mg of pure iron per pill, so the maximum dose supplies 207mg of pure iron per day.

    Please note that pharmacists in the UK can sell prescription-strength iron supplements at their own discretion - prescriptions are not mandatory. Boots often choose not to sell it, but I've had no problems getting it from Lloyds and Tesco Pharmacies.

    Some more info on iron :

    dl.dropboxusercontent.com/u...

    Iron supplements cause constipation in many people. To avoid this take 500mg - 1000mg vitamin C with each dose of iron. Vitamin C helps the body to absorb iron. High dose vitamin C also causes diarrhoea. Adjust the dose of Vitamin C to keep things moving comfortably.

  • Wow! Humanbean, thanks for SUCH a comprehensive reply in every way!

    My son has started taking Ginseng which I have been advised above to stop due to it raising cortisol, but he wasn't on that at the time of the saliva test.

    He does not do any exercise, so not taking any protein powders or steroids etc.

    Thank you for the supplements link, but he was not taking any of those supplements, either plant based or chemical prior to the test.

    Equally he is not a hot drink person, so only has the very occasional hot chocolate with a half teaspoon of de-caf coffee (probably only once a week anyway!)

    Humanbean, that endocrine document is AMAZING, thank you, a little bedtime reading later!

    "There is some very good advice on that page too which your son should make use of if he can." --I have forwarded this and other documents to him to read through too, thank you so much!

    Wow to the f.lux!! Yes, he is a software developer by nature, and I am always concerned about the time he sits in front of a PC, but if you are a software developer how can you do anything else! The f.lux will no doubt have a big impact on him at night!

    Not exercising is a big problem, he has been so down in the dumps, anxious, depressed, and I have said how exercise even just a little walk a day may help, hadn't thought about the cortisol being affected in that way.

    Diet - he is almost following your suggestions already. Low carbs mainly because he reacts to most grains digestively and doesn't like potatoes!

    I will really look into the different fats again though, I have been researching it over the last few weeks.

    He doesn't have slumps that he notices but is aware of being very alert through the evening. He does not drink caffeine at all.

    Vitamin C, he has been taking one fizzy tablet a day 1000mg, I will increase this.

    Holy Basil, I bought the same one you recommended, Swansons. It is a powerful one. But I will try him on an extra one at bedtime.

    His iron is 22.9 (6.6 - 26). So with ferritin needing increasing, will this be ok to still supplement with ferrous fumerate for example?

    Thank you for giving me so much information to absorb and think through.

    I am very grateful x x

  • The Holy Basil I linked actually recommends a dose of 2 capsules, twice a day. One capsule really isn't going to make much of a dent.

    His iron is 22.9 (6.6 - 26). So with ferritin needing increasing, will this be ok to still supplement with ferrous fumerate for example?

    If you want to keep tabs on other iron measures besides ferritin (which is a good idea) :

    medichecks.com/iron-tests/i...

    It would be nice to have haemoglobin too.

    thyroiduk.org.uk/tuk/testin...

    Thee are special offers on Medichecks tests for the rest of this month.

  • thank you soooooo much!

    Something I forgot to write in the original post is that he totally CRAVES ice! I have read that this is called Pica, in both anaemia, and pernicious anaemia!

    It is so bad he always has a bottle of water in the freezer and HAS to have it by his side all day. Good thing is it makes him drink more water, he is not good at remembering to eat and drink generally!

  • Humanbean, that endocrine document is AMAZING, thank you, a little bedtime reading later!

    I've never attempted to read it all! Have fun. :)

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