Problems in diagnosing.

[x_b_x]

So I am literally feeling at the end of my tether now. For many years I have had various symptoms. A lot of them started after being on the contraceptive injection which beforehand I was a very active healthy person, now I feel completely the opposite.

I gained around 4 Stone whilst on the injection, I came off around 6 years ago and have struggled to lose the weight since, I have fluctuated so much, I had a baby 9 months ago and now also have all my baby weight on top of that. I developed a very rounded flushed moon like face which also fluctuates. My cravings for sugar and salty things are horrendous, I get the worst hunger pains, like I am constantly craving food, even after a meal I can be craving straight away yet when I start to eat a meal I instantly feel full. I have slim arms and legs yet a huge belly which when it bloats becomes so enlarged and painful. I struggle with things like buying jeans, I wear maternity jeans as my belly is big but then the legs are always really baggy.

I have the worst mood swings, I am currently on GnRh injections to stop my ovaries as the doctors have thought it is my periods causing my severe mood swings but I am still the same. I literally feel on a vicious cycle of having blood tests for things like my thyroid and they come back normal and then its put aside and the doctors do not want to know, I just get told I need to lose weight which is the reason I am there, I can't. I struggle so much with is, I am aching all over, I have reduced my calories and I try to exercise but still nothing. I had an ultrasound scan as I always have pain in my upper right side in my back mainly, I got told I had a fatty liver and my blood work for my liver came back as abnormal but expected.

The doctor recently had a blood test done for cortisol which came back borderline, I have had a 24hr urine test done which I took back to the hospital the Friday just gone, I am not sure how long they take to come back but I am so paranoid that it will all be ok and then the doctors will not want to test any more and I will be back in the same boat as I started in. I have heard cortisol tests cannot just be done the once they need doing 4 or 5 times for accurate results as the cortisol can change, not sure how true this is. But I do not feel my doctor will do this, I just think if this test comes back fine that will be it.

Has anyone else had a real struggle with a diagnosis?

[humanbean]

The doctor recently had a blood test done for cortisol which came back borderline

Borderline high or borderline low?

From your description my first thought was Cushing's Disease or Cushing's Syndrome, I can never remember which is which.

1) en.wikipedia.org/wiki/Cushi...

2) en.wikipedia.org/wiki/Cushi...

I should say straight away that I'm not a doctor, and I have little idea how your contraceptive injections will affect your cortisol, or how your sex hormones will affect cortisol, but link 1 has a reference to Pseudo Cushing's that might be relevant :

Elevated levels of total cortisol can also be due to estrogen found in oral contraceptive pills that contain a mixture of estrogen and progesterone, leading to pseudo-Cushing's syndrome. Estrogen can cause an increase of cortisol-binding globulin and thereby cause the total cortisol level to be elevated. However, the total free cortisol, which is the active hormone in the body, as measured by a 24-hour urine collection for urinary free cortisol, is normal

A blood sample for a cortisol test should be taken at 8.30am - 9am because it is supposed to capture the highest level you have during a 24 hour period. Cortisol has a circadian rhythm, and true Cushing's produces so much cortisol that levels rise to be high all day. This graph shows what I mean in a very cartoonish fashion.

Cushing's and Cortisol Graph

[humanbean in reply to humanbean]

Cortisol can be measured with blood, saliva, and urine. You've had the blood test, you have had a urine test (but with no results yet), but many of us think that cortisol tests using a 4-part saliva test is more informative than blood or urine. Unfortunately the NHS (mostly) doesn't agree, although they will test saliva cortisol at midnight under certain circumstances.

nhs.uk/conditions/cushings-...

There are various companies that do saliva testing for cortisol but the quality varies a lot. The best ones I know of are :

regeneruslabs.com/products/...

For info on how to order from Regenerus see this link :

thyroiduk.org/help-and-supp...

Another company is Genova Diagnostics UK, but they are more awkward to order from and more complicated to use :

gdx.net/uk/product/adrenal-...

thyroiduk.org/help-and-supp...

Other companies that do saliva testing should be avoided. They provide results like :

Sample 4 - Result < 3.

There is a big difference between a result of 2.99 and 0, particularly when you are trying to fall asleep!

Also reference ranges that start at zero are not believable. Having zero cortisol is probably only acceptable for a corpse.

Neither Regenerus or Genova use these types of reference ranges which is why we suggest them.

...

Please note that blood cortisol and saliva cortisol aren't testing the same thing. Cortisol (and other hormones e.g. thyroid hormones) are carried around the blood stream attached to transport proteins. The main transport proteins for cortisol are Transcortin and Albumin.

The body can only make direct use of cortisol after it has been separated from its transport proteins.

Blood cortisol measures cortisol that is attached to transport proteins (usually referred to as Bound Cortisol) and cortisol which is unattached (Unbound Cortisol). It usually measures a single blood sample for maximum cortisol around 8.30am to 9am. I always wonder how they know when the maximum cortisol is for people who may well have erratic sleeping patterns.

Urine cortisol is Unbound Cortisol and usually involves testing 24 hours worth of urine to give a total level of Unbound Cortisol (I think), but I'm not familiar with results for and uses for urine cortisol.

Saliva cortisol measures Unbound Cortisol only. The patient is required to give four saliva samples at four specific times a day. It gives more information than blood (in my opinion) because it gives an idea of cortisol output throughout the day when people are fairly active.

...

For information on testing done by Endocrinology Departments in a hospital, see this document (known as the Endocrine Bible) and use it for reference :

imperialendo.co.uk/Bible201...

The Short Synacthen Test is described on pages 68 - 70. (As far as I can tell it is usually used to look for Adrenal Insufficiency - the opposite of Cushing's. Note that hospitals often save themselves money by doing a half-assed version of the SST. They miss out on measuring ACTH.

As a result they can diagnose Primary Adrenal Insufficiency, but they can't diagnose Secondary or Tertiary Adrenal Insufficiency.

For the definitions of these see this link :

en.wikipedia.org/wiki/Adren...

For suspected Cushing's Disease see pages 25 - 34 onwards in the Endocrine Bible. I don't know which tests are usually carried out for Cushing's.

[humanbean in reply to humanbean]

I discovered I had high cortisol via a saliva cortisol test nearly 10 years ago. I looked for something that would lower cortisol that I could buy without prescription.

I tried quite a few different things. The one I found that worked for me was Holy Basil. Another one I tried was Seriphos.

Holy Basil works for me - but very slowly.

Seriphos worked for me but too quickly for me to adapt - it was also very expensive by my standards. I don't know if it still is. Holy Basil is cheap in comparison.

[Hidden in reply to humanbean]

Having zero cortisol is probably only acceptable for a corpse.

This made me snort laugh. 🤣