Help interpreting blood/saliva cortisol results and symptoms?

[beam_me_up]

Good afternoon,

So for many years I've suffered a myriad of symptoms, I've always put them down to something else but in the last few months had had to take them more seriously and hence ordered tests via medichecks to try to either get reassurance nothing is wrong or get some evidence that a GP will take seriously.

The first test was an 'Ultimate Performance' blood test a couple of weeks ago to try to cover everything as a general search, this showed a number of abnormalities. (The test was done first thing in the morning, before eating or drinking)

LDL cholesterol was 3 (Range 0 - 3 nmol/L) HIGH

HDL cholesterol was 1.36 (Range 1.1 - 5.5 nmol/L) Borderline Low

DHEA-S was 12.8 (Range 2.41 - 11.6 umol/L) HIGH

Cortisol was 516 (Range 166 - 507 nmol/L) HIGH

Prolactin was 293 (Range 86 - 324 mU/L) Within range but high

On the strength of the blood test the recommendation was to perform a 24hr saliva cortisol test which I completed last week, the results.

Cortisol - Waking: 30.4 (Range 6 - 21 nmol/L) HIGH

Cortisol - 12:00pm: 6.43 (Range 1.5 - 7.6 nmol/L) Within range but high

Cortisol - 16:00pm: 5.37 (Range 0 - 5.5 nmol/L) Within range but high

Cortisol - Before Bed: <1.5 (Range 0 -2 nmol/L) Normal

The next recommendation is to perform a 24hr urine cortisol test which I will take as soon as I can.

I've listed my symptoms below, some I've had for years, some are new in the last few months:

Heart palpitations

Chest pains that last sometimes all day like a squeezing tight feeling

Anxiety, nervousness, slight depression

Muscle aches and pains in upper back, hips and neck

Joint pain in knees after walking (40 mins or more)

General fatigue

Heart rate rises very quickly, just house work raises it and the contractions are very deep and heavy

Light headed when I get up from sitting or laying down

Feeling confused and just not with it like I'm in a dream or about to pass out

Poor short term memory and often have to concentrate to put sentences/thoughts together and occasionally slur words

Poor attention and concentration

Night sweats, most nights I wake up with wet bed sheets and have to turn them over and towel down

Waking up during the night and not able to get back to sleep, the hour changes each week but I wake up feeling like I'm hungover most days now

No interest in sex, weak erection and not much 'sensitivity' down there

Excess stomach acid, I have to keep taking antacids before bed

Dry skin which I've been living with for some years, my face is uncomfortable unless I moisturise immediately after showering

Dry patches of skin on elbows

Bloated stomach, I look pregnant if I relax my stomach fully in front of the mirror

Skin is weak and easily cut, but doesn't not seem to bruise that easily

Constant tingling/strange feeling in the skin on the top of my forearms

Its quite a detailed list so sorry for the essay but I may as well make the picture clear if I'm going to ask for opinions.

What I'd really like to know is at what point I would have a strong enough case for a referral to an endocrinologist on the NHS. I've had consultations about some of the issues before and they're always written it off as stress, depression or something else. I feel like there is something else going on.

Also it is possible that despite the low before sleep cortisol that its still something like cushings? I've read that one test isn't enough but the doctor who commented on the results seemed assured that it wouldn't be CS due to this result. I would imagine the GP will be even harder to convince of a possible early stage or mild CS case.

Many thanks to anybody who offers an opinion!

[Hidden]

Although they are saying that your cortisol is high it isn't if it was done around 8-9am. An average cortisol at that time of day should be around 450-600. Have you put on weight rapidly? You need to ask your GP to do an early morning blood cortisol to see what the levels are. He can also do a 24 hour urine to see if the levels are excessive. Have you had your thyroid checked? It's also worth getting your B12 & vit D tested as well.

[beam_me_up in reply to Hidden]

Hi there, the blood test was done around 10:30am probably an hour after waking.

I have put on some weight since December 2018 and attempted a diet but nothing happened, my diet is already very good (just salad, fish and meat most days) and hasn't changed so this is strange but I'm not really counting it as a symptom at the moment, its really the other things that are bothering me more.

I'm trying to avoid the GP until I've got some hard evidence of my own this time as from my previous experiences they seem to get upset when you push them too hard for tests then they seem determined to prove you wrong. But I will take the urine cortisol test privately as soon as I can.

My thyroid was checked as part of the blood test and looked okay:

TSH 3.86 mIU/L (Range 0.27 - 4.2)

Free T3 5.91 pmol/L (Range 3.1 - 6.8)

Free Thyroxine 19.8pmol/L (Range 12 - 22)

[Clairewalker751 in reply to beam_me_up]

TSH of 3.86 is high most if us would feel rubbish at that did they test your thyroid antibodies?

[jostafford0 in reply to beam_me_up]

Hi - your TSH looks too high. Did you have your thyroid antibodies tested too? You also need to get your B12, vit D, folate, ferritin tested. When my TSH was at 3 I suffered with loads of under active thyroid symptoms. It took over 10 years to get diagnosed. Jo xx

[beam_me_up in reply to jostafford0]

Thank you for your responses, if TSH is raised but T3-4 are still within range would I still get symptoms? I understand that TSH is the stimulation to produce the second two (correct me if I'm wrong) so I would of thought that if T3-4 are still in range this would mean not great efficiency but my thyroid is still working okay, or does it not work that way?

Thyroglobulin Antibodies: <10 kU/L(Range < 115)

Thyroid Peroxidase Antibodies: <9 kIU/L (Range < 34)

Ferritin: 298 ug/L (Range 30 - 400)

Folate - Serum: 10.16 ug/L (Range 3.89 - 19.45)

Vitamin B12 - Active: 117 pmol/L (Range 37.5 - 188)

Vitamin D: 59.3 nmol/L (Range 50 - 175)

They flagged that I was borderline vit-D deficient so have since been supplementing, its definitely helped lift some of the depression and mental issues but not much else.

10 years is a long time to suffer! I really hope I dont have to go that long before getting an answer but I have a feeling it will still take years before I either fix it myself or it gets bad enough to be seen in the professionals eyes as an actual condition.

Can I ask what the key change was that meant you could finally be diagnosed?

Thank you again.

[jostafford0 in reply to beam_me_up]

When I was finally diagnosed my TSH had gone up to 5.6 and I could hardly walk. I was so ill I had to take time off work then the Levo couldn't get regulated in my body because I'd gone so long without being treated. As far as I am aware I didn't have any tests for free T4 or T3 at the time of diagnosis as my NHS GP's don't test for it and it wasn't until I started reading books and internet posts that I found out about it. Therefore I have no idea what my free T3 and T4 were at diagnosis. You can suffer with symptoms before it shows up in bloodwork so this is maybe what your body is doing? Jo xx

[beam_me_up in reply to jostafford0]

Hi Jo, I've been looking a lot more into hypothyroidism recently and I'm beginning to think that this may indeed be the cause of my issues. I'm just wondering how easy it was for you to get medication with TSH of 5.6 as I hear the NHS usually wont treat until it goes >10, did you have to involve a private endo for this or did you just happen to have a good GP? Also how are you feeling now, did you see an immediate reduction of you symptoms after T4? I assume you've not been offered T3 also.

[jostafford0 in reply to beam_me_up]

Hello - I think they must have tested my antibodies after the TSH blood test. I know they tested for something as they said they needed to find the cause of the high TSH. That’s the only thing I can think of. I thought taking Levo would be my saviour and all my symptoms would be relieved but I was wrong. I went back to see my GP to say the meds aren’t working but they didn’t want to know. That’s when I realised they wouldn’t help me any further and I was stuck so I saw a private Endocrinologist. He found I’d got low free T3 so put me on T3 but I didn’t feel like it did anything for me so came off it. Maybe I didn’t give it a chance but I felt exactly the same being off it and on it - dreadful. My GP never told me about all the nutritional deficiencies you get being hypothyroid and I got anaemia which is the worst I have ever felt. I now self inject with B12 and take high dose B vits, vit D, zinc, vit C, probiotics and Adrenal support as my adrenals were affected too. The private Endocrinologist referred me to a gynaecologist as I had terrible period pain since a teenager and I was diagnosed with Endometriosis and Interstitial Cystitis.

My advice is don’t give up and if your GP won’t help you go private until you get a diagnosis. Best of luck and if you have any questions just give me a shout xxx

[LynneG]

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Know more than your doctor - just go to him for the blood tests you request

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Hope this reply helps x

[beam_me_up in reply to LynneG]

Hi Lynne, thanks for your response.

A lot of those things are new to me but I will try to educate myself thank you!

[Ossuryak]

Hi, look up zinc, selenium, vite d,coconut oil, meditation to help with cortisol . Glucose for liver function, juice oranges, eat fruit every 2 hours to help liver covert t4 to t3 ,i do and it makes me feel much better.Also look at rt3 test as your t3 may not be converting properly and not getting into your cells. Also maybe it's adrenalin not cortisol making you feel the way you do ? When l try to loose weight or my t3 is above mid range i get palpitations. Hope this helps.

[MrWellness94]

Apart from what was said from others, it would be prudent to hone in on those cortisol results. High cortisol even just a little, can indicate cushings disease to learn more about this I would recommend you go to csrf.net they have a great website with lots of resources. This is especially important since the symptoms you listed all correlate to the disease as well. I would ask for another cortisol test, and yes cushings is a difficult disease to diagnose since you do not have to have all symptoms to have it and even those that have the disease their test results are within normal range which delays a diagnosis further. I would definitely push for a diagnosis of at least a referral and more blood tests and urine work! I am in the same predicament as you, hang in there.

[Mama196]

Are you sure you have excess stomach acid? Low stomach acid can also cause heartburn and maybe that could be a crucial piece of the puzzle?

[beam_me_up in reply to Mama196]

Yes I've been hearing this but the anti-acids seem to work at the moment, I have some apple cider vinegar to try which is acidic so I will see if it makes it worse or not.