I posted here a few months ago when I suspected I had addisons and well I need some advice.
I am still suffering with all kinds of problems fainting, low sugar, low blood pressure (80/40 and lower), unexplained sudden allergies and I have lost so much weight (even though I am eating) people think I am anorexic.
Anyway since July I have been tested a few times. I have had 2 ACTH (one 60mins and one 90mins) stimulation tests results below, which I think are abnormal but I am not sure.
My endo told me they were fine but when he looked at them today he said there were not and I will need steroids. By baseline ACTH is very low and reads at less then 5 (reference range is 10 to 49.7ng/l.)
my FSH and LH are also abnormally low (almost non existent) which the endo said is a BIG problem however I ended up falling pregnant (now nearly 5 months) and have had huge complications nearly losing the baby 3 times, my endo now says that because I conceived I cannot really have too much of a hormone imbalance, I am so confused. I think he thinks I have a pituitary problem (secondary addisons) but I have no idea!! He has now said that he needs to give me a 3rd ACTH stimulation test and if the results are the same as the previous 2 then he will put me on steroids. Is this test safe in pregnancy? I am worried as I have so many complications already am terrified of harming the baby.
I hope the above makes some sense I would really appreciate some feedback on the above and if anyone can give me some feedback on my results.
I am going to have a synathen test onthe 2nd feb, This is not a good day as it will be a year that day that my dear mum died!!
I am so scared about this test, only the other day I had a funny turn, MY heart and pulse and my bp was all high, I have read that this test can make your heart go out of rythum.
I already have a underactive thyroid hashi's...I hope all goes well for you...Mandy
I had an ACTH stimulation test done when I was pregnant. I don't recall specifically, but a book was brought out and read to me regarding the safety. I know they could not tell me that it was absolutely safe, but that certain studies indicated that it was probably safe. From my recollection, it sounded like one of those things that if you didn't have cause to do, you wouldn't because you can't be certain, but if you need to know, then you do it because of the benefits. My little guy seems fine, btw. He's 11 weeks old. But, why don't you ask your endo and perhaps also your OB what is known about the safety?
Anyway, another thing is that you might want to make sure the endo is aware of the uncertainty of interpretting an ACTH test during pregnancy. I found an article after I had my test done (and gave a copy of it to the endo), that pointed out that in late pregnancy (possibly 2nd trimester, but definately 3rd), the adrenal response increases by 60-80 percent. On top of that, your body is producing more binding hormone which makes your cortisol appear higher than it normally would be. This article theorized that the cutoff for late pregnancy for the ACTH stim test should be 30 ug/dl and that an AM cortisol of greater than 30 would rule a problem out. Note - that was a theory and the author pointed out that no one really knows for sure what the cut off should be.
As for my results. Before pregnancy, I had 8.9 ug/dl for an AM morning cortisol test (about 8 months before getting pregnant). Late in my second trimester, I had the ACTH stim test. I started at 15.9 for am cortisol. And at 30 minutes (they only ran the 30 minutes), I had a 29.1. That was at first pronounced by the endo as normal because I had rose more than 9. But, when I presented him with this article (and I will look for it for you), he agreed that he couldn't be sure - but that it still looked good to him.
I had the delivery and I was ok without any hydrocortisone or whatever they would have given me.
Anyway, one last thing - don't let them tell you that you can't have a pituitary or hormonal problem because you got pregnant. Maybe you have some partial deficiency and you had just enough at the right time for pregnancy to occur. From what I've read, some hypopituitary patients can have spontaneous pregnancies without assitance (although with a gondal deficiency, it's supposed to be uncommon.)
I don't know why some of these doctors seem to get the idea that just because you produce some hormone that you must be ok. They dont' tell heart patients that because they have heart function they are ok.
Hang in there. This is such an important issue during your pregnancy as it can be life threatening.
At the very least - if you get nothing else out of your doctor, make sure that he writes a letter to your OB explaining that you could have an adrenal problem and what to look for and what to do during delivery. And, make sure the OB gets it and that there's a copy of that letter at the hospital when you deliver and that all the nurses have read it and are of its contents.
It is possible to have an adrenal deficiency but be ok unless and until you have a physically stressing event (such as delivering a baby), although, your symptoms (particularly the low blood pressure) seem more like you might need replacement on a daily basis so that you are covered for any kind of stress such as urinary tract infections (which are common during pregnancy), the stress of just being pregnant, and of course, delivery.
I have been looking for that article, but haven't found it yet. Thought I had it saved on my computer. If I find it, I'll post the journal cite. You might be able to get it at a local library or buy it online (although it's expensive - I think 30 dollars for the article).
Good luck. Hang in there. And congrats on your pregnancy - have a healthy delivery.
I had my 3rd ACTH stimulation test and i'm currently waiting for the results It all seemed to go okay although I was a bit concerned as the docs didn't seem to take the blood at exactly 30 and 60mins!!!!! in my last 2 tests the docs took the blood exactly on time. Anyway the test really made me feel tired, but it made the baby very active which I was a little concerned about. Both my endo and obs insisted the test was safe.
I don't think my doc has factored in the idea of pregnancy affecting my results I am nearly 6 months pregnant. So far all he has done is confuse me!!!! he said that i had secondary adrenal insufficency due to very very low ACTH and a low / normal cortisol levely (cortisol fluctuates, lowest am reading has been 80nmol/L and highest 124nmol/L (1 month pregnant at the time). He keeps changing his mind though so I will be interested to see how these next results come out!!!! I just wish these docs would stick to the same story and not keep changing their minds!
Congrats on your new addition! I am glad all went well with the delivery etc and all is well.
Many thanks again for the info it was really helpful.
I am by no means an expert and am still trying to figure this out for myself but I also did read that an ACTH of less than 10 with a low cortisol level is diagnostic of Secondary Adrenal Insufficiency due to a pituitary problem. You should probably have all your pituitary hormones evaluated.
Good luck and keep us posted.
My am cortisol ranges from 80nmol/ to 124nmol/ (124 was am during pregnancy). I am not really sure what the readings are when converted in to ug/dl but I think 80nmol/ is equal to 2.9ug/dl (lowest) and 124nmol/l is equal to 4.4 (although I could be wrong).
The conversion factor for mnol to ugdl is 26.9. Therefor your 80 would equal 2.97 and your 124 would equal 4.61. Both are very low for am levels. There is alot of controversy on the post cortisol levels after stim test but should at least double (which yours did) AND be above 18-22 or 484-590. You did not reach that on any of your tests.
Those numbers are too low normally and way too low for pregnancy. What does your doctor say he is going to do about this? You will almost surely need some cortisone treatment to get you through delivery safely. And you probably should be on something now as well.
I got my last test back and now I am more confusedd then ever!!!! my acth stimulation test came back really really high not sure if it due to to the pregnancy but doc says my results were way too high even for pregnancy (came in around 1700nmol). The strange think is my ACTH is still abnormally low especially for someone who is pregnant, so I have no idea what has happened or if they did the test wrong or something. Last night my blood pressure was 60/30 and I was blacking out when I stood up, the docs gave me prednisolon (20mg) per day which I have not started yet as I am concerned to take it if my cortisol was really that high??? I am so confused all I know is I feel terrible.
Also, although, again I highly recommend you talk to your doctor... in some ways it seems odd that you would be so high when you weren't before. But, there's a couple of things to think about ....1) during pregnancy your adrenal response (normally) would increase 60 to 80 percent 2) the ACTH test (and I'm assuming you had the high dose 250 ug test because that's what appears to be most often given) gives you what is called a superphysiological dose - more than your body could ever produce on its own to see how your adrenals work 3) what you are given for the test is a shot of the hormone that the pituitary produces - if you have a primary deficiency, your adrenal glands won't respond adequately or at all to that hormone because the adrenal glands aren't working right. if you have a secondary deficiency, the theory is that your response won't be good because your adrenals will have started to not respond as well because they have not been getting ACTH from the pituitary ( i think effectively the adrenal gland falls a asleep - I've seen it referred to as atrophy). I've read for secondary deficiency, that if the ACTH test were repeated the next day, the response would be higher (I think because your adrenals woke up a bit). 4) From what I could see from doing my own research for myself, the information out there about what test results are right for pregnancy in this area seems to be on the sparse side ( probably because there's not a lot of testing in pregnant women for this issue).
I've seen all sorts of estimated ranges as to where your AM cortisol should be in your 3rd trimester. I've seen 25 to 35 as the right range. In a medical journal article (cite to follow), Ihe authors note that in 4 different studies, the following ranges were considered normal 13.7 to 37.7, 20.9 to 50, 21.6 to 31.2, and 24-36.2 (American Journal of Obst & Gynecology 183:669-73(2000). In this article, among other things, 6 women with normal adrenal function were given the low dose ACTH test (1 ug as opposed to 250). The highest result achieved was a bit over 50. That's only 6 women though and I wonder if those 6 women would have gone higher with the high dose test, or if with more normal women, the range would have been different.
So, anyway, from what you said before, it sounds like your AM cortisol is way, way too low even if you weren't pregnant. Low blood pressure is a classic sign of low cortisol. I don't know why you would score so high on the ACTH stim test, although perhaps it is a lab error. Or maybe you are secondary and normally your pituitary wouldn't be putting out the right amount of ACTH, but your adrenals have woken up from being stimulated during pregnancy ( I think the placenta produces a hormone like ACTH) . Perhaps you could have a secondary deficiency and because you're pregnant your adrenals have really woken up and when given ACTH they react well (but again, if you have a secondary deficiency, your body would not be supplying the right amount of ACTH and so it won't react to stress appropriately to trigger your body to make enough cortisol when it's needed).
I searched high and low for myself for a study dealing with ACTH stimulation tests in women that had a secondary deficiency because of a true pituitary problem. I didn't find anything other than articles looking at women who's response was suppressed because of taking steriod injections for lung maturity. In fact that study I cited about, looks at that issue. That study involved only 8 pregnant women who were taking the steriod injections and none of them had ACTH response rates that went above 30. In a later article (which I still can't find) another researcher uses that study to conclude that 30 should be considered the cuttoff for the 250 ug ACTH stim test in pregnant women in late pregnancy (although he's not sure himself if that cutoff is correct).
Again, please keep in mind that I'm not a doctor. I'm only sharing with you things I read when I was pregnant and worried; and I'm strongly suggesting that you speak with your doctor. Please don't not talk to your doctor and also not take the medicine you've been prescribed. Please get answers to all your questions and if you don't trust your doctor, try to get a second opinion quickly before you just decide not to take the medication. Also, you need to know from your doctor whether you should be treated during delivery since this is a highly stressful time for your body and if your body isn't going to produce ACTH and cortisol correctly, you would need to be medicated during delivery (and I believe for days later). If you need such treatment, your endo needs to communicate this to your OB.
I think ( I am yet to see a copy) that my baseline cortisol was 22 and it increased dramatically from the ACTH injection. My baseline normal ACTH is still on the low side.
Went to see my endo this afternoon and he said that I need to do the insulin test, where they inject you with insulin to make you hypoglycemic and then test your stress response. He said that it is dangerous in pregnancy but he wants to do it ASAP but I have refused. I am having a lot of problems trying to keep the baby okay so I do not want to put him at risk. I am nearly 6 months and it is not going too well as I have not gained weight (no one believes I am pregnant) even though I am eating loads and loads (in fact since yesterday I have lost 3kgs).
The doc wants to take me in to hospital on Monday so they can sort out my blood pressure, he says my cortisol might have gone a lot higher as I am taking various hormone tablets to help with my pregnancy. He also says that I will need to take hydrocortisone on delivery but he has told me to hold off for now on the steroids he prescribed so confusing!!!
The info you gave me was very very helpful, do you have secondary adrenal insufficency as I have seen that it is an area that you know lots about? I really appreciate all the advice and sorry for venting!!!!