Questions to ask GP & "elevated"/"high" test results

Hormones
1

Hello everyone,

Background:

I am a 36 year old female and in May 2014 I sustained a very serious brain injury alongside a large basal skull fracture & spinal injury.

Ever since my accident I have had my therapists/medical professional's constantly comment on my "stress levels". I don't feel stressed but I am obviously presenting that way.

Before my accident I was in very good physical shape, very lean & weight training regularly as it was my job (Personal Trainer/Physiotherapy Technical instructor). At the time of my accident I went from being a lean 9 1/2 stone but dropped down to 7 1/2 stone very quickly.

For the past 3 years I have been steadily gaining weight & although my activity levels have dramatically decreased, I have kept a close eye on my diet & have even tried "drastic" calorie restrictions just to experiment. It's very hard to lose weight & right now I'm 4 stone heavier (3 years on). I've never had to watch my weight so it's a bit of a mystery.

When I get upset and ask my doctors why I can't lost weight, they tell me not to be so hard on myself & that it'll come in time. But I'm frustrated with it!

I have poor sleep patterns, finding it very hard to fall asleep, difficult to stay asleep & then waking up early, feeling exhausted! I get periods of feeling "wired" where everything is sped up, my talking, walking actions etc.

I also do have a small "outward curve" on the base of my neck (?baby buffalo hump) but at this point don't want to seem like I'm making my "symptoms fit".

Fatigue is par for the course with regards to brain injury but I feel worse now than I did a year ago. Back then I had a general feeling of being "unwell" and my GP ran a whole host of the usual blood tests (no hormone testing other than basic thyroid test) and everything came back "within normal ranges". I didn't question it & just tried to carry on as best I can.

Anyway I'm now pretty desperate and as a result I got my cortisol levels checked privately. These were my results:

Cortisol (saliva):

Waking: reading 22.81 (HIGH) nmol/l (norm range: 14-21)

12:00 : reading 17.01 (HIGH) nmol/l (norm range: 4-9)

14:00 : reading 10.62 (HIGH) nmol/l (norm range 3-8)

16:00 : reading 11.67 (HIGH) nmol/l (norm range 2.5-7)

18:00 : reading 5.53 nmol/l

Before Bed : reading 6.49 (HIGH) nmol/l (norm range 0.8-2.5)

The doctor also wrote:

"Your Cortisol levels throughout the day are elevated. Persistently raised cortisol levels (particularly the early morning and late evening levels) may indicate underlying Cushing's disease, but further testing would be required to diagnose (or rule out) this condition. Salivary cortisol levels correlate well with serum (blood) levels - though it would be advisable to carry out a 9am cortisol blood test for confirmation next."

Is there anything else I should ask my GP for other than the 9am blood test that was recommended?

Many thanks in advance

Emma

2

Hi! I'm so sorry to hear you're not feeling well and you're struggling with your weight. It's such a frustrating symptom to deal with! I'm glad you didn't give up and continues to search for an answer. Advocating for yourself is super important as only you know what is normal and what is abnormal for your own body!

I'm in the United States, but salivary cortisol seems to be the go to as a "gold standard" for cushing's testing here. You can also ask for a 24 hour urine cortisol test, that's another test we do here.

I'm a third shift employee so my circadian rhythms and diurnal cortisol patterns are flip flopped. I'm 19 years into being sick and they still cannot diagnose me. I have cyclic episodes and my doctors refused to listen to me when I told them I needed to test during an episode and before MY bedtime between 5-8 am. They ignored me and told me to test at 11pm consistently and never swapped the ranges around for times of day. Well... I finally have some answers now and finally got my doctor to do another cortisol (salivary) test which she appropriately read the results and it was three times higher than it should have been. I have had three elevated 24 hour urine results back in 2014 and all the doctor I saw told me "they're not high enough to prove cushings". I have a pituitary tumor and they refused to take it out without biochemical proof that it was causing issues. They wrote me off as being fat with insulin resistance and PCOS (I called bull on both of those diagnoses!). Now I have elevated aldosterone, elevated cortisol, elevated testosterone and elevated catecholamines and metanephrines levels. All which point to something called a pheochromocytoma, a rare tumor that secretes adrenaline and noradrenaline. And all the other hormones are probably elevated from the tumor pressing on the adrenal gland. That's our thoughts anyway. But anyway, enough about that, they used the salivary, 24 hr urine and serum levels here. I had elevated serum levels multiple times but they told me it was the birth control I was on. I'm not sure if that was truly the case or not but I'm no longer on the birth control. Just something to keep in mind if you are on any form of BC. Ask your doctor if it could be causing false positive results. You may have to stop it for a bit and test again.

I am wondering if you've somehow damaged your pituitary gland in the severe trauma to your brain and skull base.. I'm not sure if that would cause excess hormone secretion rather than cessation of hormone secretion.

There is one test that I am still not sure about as being a standard test to run.. I read mixed opinions. It's a 17OHCS (17 hydroxycorticosteroid). It is a metabolite of cortisol but it is used to test adrenal function. Mine was elevated but two doctors ignored it 🙄 Of course. But maybe read about it and see. The standard testing may be slightly different there!

I hope I didn't ramble on too much!! Please feel free to send me a private message if you want to chat or have any specific questions about my personal journey with this diagnosis process.

Either way I hope you let us know how you fair with future tests and maybe even a diagnosis! Good luck! Take care of yourself and keep in touch!!

Alicia

3

So sorry to hear all your problems, awful I know.  I am glad thayou have already had a reply.  It erainlysounds as if you need further tests.  If it is Cshngs ther is no poinbt in trying to diet aswi thelevels so high food just goes straight to fat.  You will hopefully get a diagnosis soon.  Please keep in touch.

4

Dear Broken doll

I understand your frustration with doctora who hinder your diagnosis by non reaction to your tests. It took me 9 years to get a diagnosis, because I was the first "cyclic" Cushings patient to be diagnosed with cylic Cushing in the United States, having 23 doctors to finally do what needed to be done.

I had numerous 48 hour collections of urine, this is testing that will show your cushings, then a dexamethiazone test, and blood tests. Mine would be sky high, the urine and then they would test again and it would be fine.

The only way to get results in getting a diagnosis is to be bold and confront your doctor's with your results on those tests you did.

Research where in your area is a top notch neurosurgeon who is known for his expertise in pituitary surgeries, and try to find a endocrinogist who is known also with knowledge of cushings disease. Your doctor's need to be more diligent and see your symptoms, which all of them relate to cushings and they need to test

You with openmindedness. I pray that you can find doctors who will look at you very closely for cushings. Please keep us posted

with your progress on disgnosis.

5

Hi Alicia,

Thank you for taking the time to respond, I really appreciate it!!!

I had my GP appointment his morning and I have come away with an appointment in two weeks time for a 9am blood test. Sadly, the doctor was exactly as I thought.. VERY defensive about me having private tests completed (salivary cortisol x6). She said the NHS don't recognise salivary cortisol and that they only do blood tests! She also said she had never heard of the lab even though I know for a fact that the NHS use Blue Horizon & they are partnered with Nuffield health (a large private health company). She said that my salivary cortisol results were "probably normal" even though Blue Horizon's own doctor commented otherwise!!!

I am going to have to be patient for now and just see what the outcome of my blood test will be!!

I am sorry to hear that you've been through so much yourself, it sounds like a nightmare!!

As for hormonal birth control, I am not currently on any but thank you for bringing it to my attention!

I would like to wish you the very best & I hope that your health improves!

Emma

6

Hi Vicky,

Thank you! It means a lot to have support, especially as doctors seem at best disinterested!

Emma

7

Hi,

You addressed me in the post and I believe your post was aimed at 2AJ131(Alicia) as I am still at the very beginning of my testing journey!

Kind regards

Emma