Cortisol - ???? postural issues, vomiting etc..

[bll78]

Hi,

A quick background I'm now 40. In my 20's I had guillan barre (GBS) type episodes x 3 - immunoglobulin helped restore my leg function and got me walking (so autoimmune in nature), but it was always a bit odd as it effected a different part of my nerves to what they'd expect (axon not myelin sheath- hence the hesitancy to call it GBS). Following it I have suffered with exhaustion ( at points sleeping 18 hrs a day). I still have periphral neuropathy and have to catheterise 2 x a day as it ruined my bladder function.

After my 1st daughter (35 years old) I started with post partum thyroid issues + hashimotos, which they didn't figure out until I was pregnant with my 2nd (there was only 5 months between pregnancies). After few weeks after 2nd daughter my thyroid levels were fine. 6 weeks later I called wanting another test after my hair fell out and I gained a stone- after much arguing that nothing could have happened in 6 weeks, they did the test. My TSH was 36 and the other was low (can't remeber exactly) so I now take 75mg levo- levels have stayed within range since we got the dosing sorted.

A few years ago I started with issues upon standing- they have recorded low bp, high heart rates all postural in nature and I was sent to the Postural Orthodstatic Tachycardia service. My fatigue is now manageable but I only work 15 hours to manage it and spend the weekends doing nothing. I vomit in cycles it has been upto 17 times in one month, and then I have months with none. No skin changes, and only a little weight loss.

My random cortisol at 11am was 222nmol they said it was low, so the hospital had me do a 9am one at the GP's- I've just called the docs and its 259nmol (no range given but a statement about it cannot exclude or include any diagnosis). I'm back at the hospital for 24hr BP monitoring tomorrow. Do I need to push for more testing given they thought the 11am 222 level was low?/

Thanks in advance

[Hidden]

Yes your cortisol is low & you do need further testing. It should be more than 400 & nearer to 500 first thing in the morning. Do you know what your BP is? All your results are pointing towards secondary adrenal insufficiency. You need to see an Endo who is experienced in pituitary/adrenal issues as not all of them are. You need a Synacthen test, this is where they take blood for a base level cortisol & then inject you with an artificial ACTH (synacthen) The idea is for the results to double the base line result. If it does they will probably tell you that you passed & don't have primary adrenal insufficiency (Addisons) as the adrenal glands are woking, however if the base level is low it could be that you have secondary adrenal insufficiency where the issue is the pituitary whicisn't sending out enough ACTH to stimulate the adrenal glands to produce cortisol. They should do an ACTH blood test which needs to go on ice straightaway to see what your ACTH levels are.

[bll78 in reply to Hidden]

Hi thanks for replying.

My BP is like a yo-yo its beeen as low as 95/56 and as high as 159/109. It is usually around 120/70 when sat. My pulse is the same as low as 55 when sat and as high as 140 when standing.

I have been suss of my pituatry since I randomly started producing breast milk (even though I could not produce enough milk post the birth of my 2 kids)- but my prolactin levels are not raised- so they weren't worried.

I will talk to the hospital tomorrow- thank you again for your help

[Emyloulou]

Hi I agree with Pauline that you need further testing re your low cortisol levels. I also had GBS almost 30 years ago and for many years all my issues such as exhaustion, numbness etc were blamed on this that was until I was eventually diagnosed with hashis with a tsh of 147! I still have peripheral neuropathy in very random places, not every case is text book. I also have bladder issues but not to the extent I have to catheterise thankfully.

I started with adrenal issues just as my thyroid was beginning to be adequately treated having begun T3. I was incredibly ill and lost over 6 stone due to lack of appetite and constant nausea in the 6 months before I started taking steroids. My bp and pulse where all over the place, I was more exhausted than with the gbs or a tsh of 147 and I also couldn’t stop shaking, it used to wake me up in the morning it was that bad. I personally think the gbs was the start of my auto immune issues and the hydrocortisone I was given at the time may have added to the adrenal issues.