Hi. Im new here. Not sure where im meant to be posting either so sorry if in wrong place.
Iv been suffering problems for years with palpitations and dizzy spells, once blacked out. low blood pressure, fibromyalgia and most recently terrible nausea, headaches, weight loss and extreme fatigue.
Been to see a rheumatologist and got a letter back saying i have low random cortisol level of 95 units and that i need more tests to rule out adrenal cortical insufficiancy.
Can you tell me how low 95 units are and what this might mean?
Thank you xx
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Carla103
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I doubt that anyone can tell you with any certainty how low that is, for various reasons :
1) Cortisol is affected by time of day. At around 7am - 9am it is the highest it gets in a day, and then it starts dropping until about 3am - 4am when it starts climbing rapidly. What is normal at 11am would be quite high at 4pm, or conversely, what is low at 11am might be quite normal at 4pm.
2) The units of measurement are essential to be sure you are comparing like with like. An example of this would be vitamin D levels. A good level of vitamin D in the US is 40 ng/mL. In the UK a good level is 100 nmol/L. They are both the same level.
3) Because of different testing protocols, machines, and populations being measured the reference ranges differ from lab to lab.
So, to know whether your result is low or not we would need to know the time of day the test was done, and we would need the reference range for the test relevant to the time of day that the test was done.
If you are from the UK, and if the test had been done promptly at 9am, then a result of 95 nmol/L would almost certainly be well below the range. A normal cortisol at that time would be in the hundreds. But if your test was done late morning, or during the afternoon, I would simply be guessing.
If you are going to have investigations done by the endocrinology department then you really need to keep this link for reference :
For any test that an endo department does it will give you the preparation required, ideal timing, what to expect and some idea of how to interpret the results.
Please note the warning on page 2 :
IMPORTANT NOTE: Any reference ranges provided apply specifically to Imperial College Healthcare NHS Trust (ICHNT). If using this resource at a difference centre, please check your local lab's reference ranges.
For any info on tests relating to Addison's Disease i.e. primary adrenal insufficiency or hypocortisolism do a search in the link I gave for the word "Addison".
I had the test taken about 12pm im guessing as my appointment was with the rheumatologist about 10.30am and i had it done straight after.
Id not eaten and only had coffee beforehand.
My rheumatologist sent me a copy of the letter that he sent to my dr requesting im seen as soon as possible as lab department think i need further investigations but my GP has sent me a letter saying to make a 'routine' appointment so cant get in till 25th June which is definitely not soon as poss.
You could ask your surgery for an on-the-day appointment with the duty doctor or make a phone appointment with any doctor. Under those circumstances you would be seen or spoken to by whoever was the duty doctor of the day, and it could be any of the doctors in the surgery,
If you see a doctor in person take a copy of the letter saying you should be seen as quickly as possible (make sure you don't lose the original) and show it to the doctor you see. "As soon as possible" does not mean "routine". Take a partner, relative or friend with you. Doctors sometimes "up their game" if there are witnesses. It also helps to keep them polite. But make sure you trust the person you go with to back you up and not to make your situation worse.
I suspect you need a serum cortisol test done at 9am. Or that step might be skipped in favour of referring you as soon as possible to your nearest endocrinology department.
Another alternative is that you write a letter of complaint to the Practice Manager, enclosing a copy of the letter saying you need to be seen as soon as possible, and pointing out that a "routine" appointment several weeks away is not "as soon as possible".
Im thinking if the lab has said i need further investigation for deficiancy that it must have been low for the time i had it done.
I do hope i get answers soon as all my problems always get blamed on my fibromyalgia and ive never been happy with that diagnosis alone. Ive been suffering since i was a teen.
Just to let you know, i didnt realise my letter has actually been sent to an Endo to see me as soon as possible, not my gp. Hospital apologised for the confusion when i rang them just. So ill be hopefully seen to very soon. Thanks for your help xx
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 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 TPO and TG thyroid antibodies tested at least once .
I didnt have the full range of thyroid tests but i had lots of immune tests, more so for lupus but they must have come back clear. Also had normal bloods done and all normal bar the cortisol and i had full bone profile done to check for deficiancies in vits etc which also were clear.
I suppose ill just need to wait and see what gp says.
I do have a goitre though and nodules but not had it checked again for over 10 years as the thyroid consultant said even though i have a goitre, my thyroid is fine.
Thanks for all your info and i will definitely bare in mind what you have said as i have suspected a possible thyroid problem for many years.
If you have a goitre and nodules then you definitely have a thyroid problem
Ask GP for thyroid antibodies testing, TSH and both FT3 and FT4
What are actual results and ranges for vitamin D, folate, ferritin and B12
Email Thyroid UK for list of recommended thyroid specialists
But getting full thyroid and vitamins tested first step - literally 1000’s on here forced to test privately £99 full testing - sometimes on offer at £79 plus £25 if want blood draw
Thank you for your reply and i shall deffo look into this xx
Hi Carla You need to see your GP asap! I can tell you quite a lot about adrenal insufficiency as I have it. Cortisol does vary throughout the day, however your result of 95 at 12 midday is still very low, any results under 200 needs to be investigated further. Cortisol levels around 9am should be around 400-500, late morning they would have droped but should still be in the hundreds. The fact that you are already experiencing symptoms of adrenal insufficiency means that you need investigations & probably starting on steroids asap. All the symptoms you mention are consistent with adrenal insufficiency. The fact that you have passed out & is worrying, it is a life threatening condition if not treated promptly, yet you can live a near normal life with treatment with replacement steroids. If you are on Facebook then join the UK Addisons info & support group, you will get a lot of help on there, but please make an emergency appt to see your GP, if he refuses then if you become ill then take yourself to A&E. Sadly many GP's have little or no experience with people with Addisons/adrenal insufficiency
It was years ago when i used to have severe dizzy spells and palpitations. (From 15yrs old till early 20s) I blacked out 1 time and after that i learned to control it and stop myself blacking out again. I saw a cardiologist who put a an ecg monitor on me for 24 hrs in which time i didnt have 1 single palpitation or dizzy spell...typical. so they told me it was anxiety.
Im almost 40 now and still suffer palpitations and dizzy spells when standing up etc but not as severe as years ago. Just lately iv noticed it a bit more aswell as thus awful nausea for the past 3 weeks. Ive lost over a stone in weight in the last 6 months, my periods have been terribly heavy, ive had left sided bad headaches and eye pain also.
And recently started feeling tenderness/soreness on the left side of my head towards my scalp.
Iv had joint and muscle pain for years hence fibro diagnosis.
What i will do is call the hospital tommorow that recommended i have further investigations and ask if they think its urgent by my results. If they say yes as the rheumy suggested then i shall call my GP surgery and tell them this.
I am quite concerned about this. My fatigue is horrendous and ruining my life, im always asleep. Iv had to cut my working hours right down recently to 16.
I also get this awful burning sensation under my left side of my ribs occasionaly which ive had about 10 years. Feels like something is stuck under there and im so uncomfortable with it. Also there is a tender spot there which can be really painful when pressed.
Thank you for your reply pauline...sorry about the long winded explantaion and i am taking note of your advice xx
I have just rang my hospital and they said i have been referred to an Endocrinologist.
They said they made a mistake on my letter where they made it look like it was addressed to my gp when actually it was to the Endo to see me as soon as possible.
I feel so relieved now!
Slow dragon i have noted your advice and i feel you might be correct about my thyroid so will deffo be looking into that if the Endo doesn't suggest it so thank you all for your advice.
I feel so much bettet knowing im gonna be seen soon as possible....phew xxx
Extremely common with Autoimmune Thyroid disease to have gluten and/or dairy intolerance
Have you had coeliac blood test? Very unreliable, but worth getting tested
Gluten intolerance is not picked up with coeliac test.
If your thyroid TPO and/or TG antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
If you have pituitary/adrenal problems your thyroid levels will be messed up which is why it's important to test FT4 &FT3. Hope you don't have to wait too long.
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