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Joodles62 05-11-2008 03:00 AM

diagnostic tests advice
My 15 year old daughter had a large dose of dexamethasone/decadron (10mg a day for 7 days) for croup/breathing difficulties in Jan 2007. Since then she has suffered from dreadful weakness and was unable to walk from April 2007 - Sept 2007. She improved for a while after a holiday in the sunshine with lots of swimming but in January this year started to get a lot weaker and this has unfortunately progressed. She can walk slowly around the house but is very limited. We realised a few months ago that last year she had many symptoms of cushings although these may be lessening a llittle now, apart from the weakness.

In June 2007 she had a blood cortisol levels done:

9am reading 240 nmol/L (200 - 700)
4pm reading 70 nmol/L
Range for this not given on test result just states "Difficult to interpret as sample taken mid afternoon. If adrenal insufficiency suspected suggest refer for Synacthen Test."

Our dr said these were normal. Since Feb this year we have believed that the dose of steroids was given in error and she should have been given a single dose of 10 mg of dexamethasone/decadon. Rumpled was very helpful on a previous posting suggesting Cyclic Cushings. We are also wondering if she may be suffering from a secondary adrenal insufficiency/suppression. She has just had a 24 hour urine test:
76 nmol/d (0 - 260)

We just want to get to the bottom of what is wrong and get her better. Our Doctor says the dose of steroids last year isn't unusually high and they often give higher doses especially to people suffering with epilepsy. She says that they only generally see adrenal suppression after prolonged treatment (daily for at least 3 weeks) and is unlikely to persist this long.

The hospital has now agreed to do a cortisol only Modified Short Synacthen test but we have to wait a further 2 weeks for this. We feel as if the doctors don't want to help us anymore, and are only doing very basic tests so that they can dismiss my daughter, possibly because they don't want to admit their error? I am wondering if anyone has any other ideas about what we can do to establish a diagnosis. We are unsure whether it is adrenal insufficiency or cushings, or something else. I have read about the salivary adrenal stress index test where DHEA is tested and cortisol at 4 different times in the day.

Thanks for your time in reading this. Any ideas would be very appreciated.

rumpled 05-11-2008 08:05 AM

Re: diagnostic tests advice
There could be a lot of things going on.
Steroid myopathy. Cyclical Cushing's, Addison's starting to develop but not at the point of being there.

Can you get to a set of doctors that was not involved in giving her the initial doses of steroids? There are not going to be looking for damage done by steroids.

Also know that if she had tumors before, unkown, which happens, they often to not show up for scans. 40% of pit tumors do not show up. I do not know the rate of adrenal scans that are inaccurate but in my cushing's friends, a large percentage of us has normal scans before surgery yet had enlarged and/or nodular adrenals when removed. There are medical papers written about the inacuracies of adrenal scans. So it is possible that there is an underlying issue that is undiagnosed.

One UFC is not sufficient to rule anything in or out... why the paltry testing? Why not more saliva? There can be so much more to show more. Why not any neurological testing like EMG (not that it is a nice test) but is anyone investigating the weakness?

Joodles62 05-11-2008 11:05 AM

Re: diagnostic tests advice
Hello Rumpled

I think you are right we will need to get away from the doctors that gave her the steroids. I just hoped they would want to put right the damage they may have caused, but I think this is not the case now.

I have asked for scans of the adrenals but this has fallen on deaf ears. She had an MRi last summer and we were told all ok. I think this was due to a ptosis so checking no tumour.

She had an EMG last summer too and which they said was normal and they ruled out a neurological diagnosis.

The doctors haven't mentioned the salivary adrenal test, I was thinking of getting this done privately while waiting for the synacthen test. Hopefully this may give us a few more clues. It is all very frustrating.

Thanks for your reply Rumpled.

Hormoneman 05-11-2008 11:39 AM

Re: diagnostic tests advice
Your daughters doctor should lose his license. 10 mg of dex is equal to 1600 mg of hydrocortisone and 400 mg of prednisone so she had the equivalences of 11,200 mg of HC and 2800 mg of prednisone over 7 days. That goes way beyond an insane amount. I've seen people who are really messed up from that amount. To much steroid will shut down cortisol receptors in cells and suppress ACTH to where it won't ever want to come back up when steroid is removed. If one already had low ACTH, the super high dosing is like the last nail in the coffin for acth production. If she was primary adrenal insufficient, now she probably has steroid therapy induced secondary adrenal insufficiency on top of primary AI. As cortisol is connected to other hormones such as sex hormones, thyroid, DHEA and epinephrine, the dex may have caused wide damage to her endocrine system which may or may not correct itself to near where it had been.

Even if your daughter didn't need steroid therapy before, it sounds like she does now. Your daughter needs serum acth and acth stimulation tests as well as DHEA-S, aldosterone, renin, sodium, potassium, TSH, free T3, free T4, TPO and Tga antibodies, igf-1 (if this is low, ITT or arginine to stim GH should be done), prolactin, LH, FSH, and all sex hormones. Get these and post them here. I'm sorry for what your daughter has had to endure by the doctors.

Pam44 05-11-2008 07:07 PM

Re: diagnostic tests advice
My son is 15 and starting getting sick when he was 6. I tried to get the ACTH stim test done several times in the past and doctors would not order it because he did not have any pigmentation or brown spots. His doctor did order the 24 urine cortisol test when he was 9 and it came back normal so he would not order further tests. He was very nauseous, weak and then started getting migraines, daily at times. His blood pressure would drop suddendly and he would get a migraine when standing up, getting into warm water or too hot. His blood pressure flucuated a lot and he was very dizzy everyday and hypoglycemic. He also seemed to feel better during the summer months so we had him tested and treated for allergies, which did not improve his sytmpoms at all.

He recently was given an 2 occipital nerve block injections using kenalog (slow releasing steriod) to try to stop the daily migraines. It only made his headaches worse and then he started getting very weak and nauseous a few weeks after the injections and started throwing up a lot. He has lost 18 pounds since the middle of March and he was thin before getting sick this time. He has been home schooled for several years due to his health.

Recently his doctor did agree to order the ACTH stim test because my mother has Addison's disease. The test came back abnormal or hypoadrenal, and we were sent to a pediatric endocronologist right away. We are still waiting on the results of all the tests and have an apt this week to get the results of all the tests.

He is still very weak but the nausea and headaches are better. His neck hurts a lot and the xrays shows he has a curve in his neck spine from all the spasms he has had over the years and deconditioning. He will start physical therapy for his neck next week.

My prayers are with you. I hope you can get the ACTH stim test done right away.

Joodles62 05-12-2008 09:35 AM

Re: diagnostic tests advice

Thank you everyone for your helpful and kind replies.
Hormoneman, thank you for recommending some tests. My daughter has had some of these already:

Serum Sodium: 138 nmol/L (132-146)
Serum Potassium: 4.0 nmol/L (3.5-5.0)
Serum IGF 1 level: 390 ug/L (240-770)

My daughter has had thyroid tests repeated on many occasions now. The results have varied considerably. Over the past two years her TSH has ranged from 1.21 to 3.5. Her free T4 has been from 11.0 to 18.
She has also had a Total Thyroxine (T4) and this was 144 nmol/L (58-154)
She has had Free T3 tested on two occasions recently. The first time it was 7.93 pmol/L (2.8-6.5)
She had the same test done about a month later and it was 4.6. We have no idea why it couldíve changed so drastically?
We have also had two thyroid antibody tests.
Thyroglobulin: <20.0 IU/ml (0-40)
Peroxidase (Microsomal): <10.0 (0-35)
Are there any other thyroid antibody tests that would be useful?
Just to let you know, our doctor on the NHS would only do TSH and Free T4, we had to go privately for the others.

Rumpled, how is cyclic cushings diagnosed/excluded. Would saliva testing be useful here?
We donít think she has ever had primary Addisons. Prior to the high steroid dose, she did have a pre-existing weakness. We believe this was due to an undiagnosed iron deficiency. However there may have been another underlying cause that we hadnít got to the bottom of.

Thanks again

rumpled 05-12-2008 01:55 PM

Re: diagnostic tests advice
Alas, another echos what I said before - that amount of steroids was borderline criminal if only they could prosecute for it.

Normally for Cushing's they would test by doing a lot of 24 hour urinary free cortisol tests, 8am cortisols, 11pm saliva tests. Other tests that support the diagnosis are DHEA sulfate, renin, aldosterone, vitamin D (usually low).

There are dex suppression tests but they are not good for exclusion in my opinion as well, cripes, I know so many who failed yet still had the disease.

My thyroid used to jump up and down like crazy when my pituitary was unstable. Your daughter has not had enough tests to tell.

Joodles62 05-13-2008 02:34 AM

Re: diagnostic tests advice
Sorry to hear you and your son have had such a tough time Pam44. We have had a tough time for two years, nine years of uncertainty and ill health with a child must be dreadful. I do hope you find out more in the coming weeks. Thanks for your kind wishes and support.

Thank you so much Rumpled for your help again. We will get the salivary cortisol tests done (4 in a day) and this also tests salivary dhea-s, which will hopefully prove useful. I must ask for Renin and Aldosterone. I have already asked for Vitamin D but our doctor almost laughed at me when I said this. She said that the calcium and phosphate that she was testing for would show up any problem with this.

The reason I asked for Vitamin D was that my daughter made a significant improvement (for a few months) last year after a two week holiday in the sunshine. This may have also been due to a great deal of swimming in the pool and therefore had a hydrotherapy effect. However, I have read how Vitamin D can help people with weakness (particularly the elderly) and also that Vitamin D is a type of steroid hormone known as a secosteroid. Perhaps it is a natural steroid that may have helped her.

Thanks again for such wonderful support. It is quite incredible that I am getting more support from people so far away, that I have never met and yet the people you expect to get support from (ie doctors) do so little.

rumpled 05-13-2008 09:52 AM

Re: diagnostic tests advice
Can your regular doctor run Vitamin D? Weird that she will not run it... my phospates and all are normal (now) yet my D was in the basement and I am still working my way out of it. It is anecdotal yet strong among my friends that most (seems all) of us with cortisol issues have low vitamin D.

Why all the saliva in one day? Only one day? But if that is not THE day... it just does not seem like she is looking hard enough to catch random cases - or will dismiss it if it happens.

I take 1,000iu of D3 daily and just managed to get myself up to 30. They do now consider D to be more than just a vitamin and essential which is why the better endos I see test for it always and look for it in conjunction with other issues.

Make sure the renin is handled as carefully as the ACTH - both degrade in minutes at room temp so a good lab will draw them in chilled lavender tubes and spin them immediately, freezing them as soon as they come out so best chance for the most accurate reading. I bring ice to labs in a baggie to lay the lavender tubes on if they do not have it (ticks them off) and pester them to spin and freeze otherwise the test is crud. Enough error delayed my diagnosis as low readings were the lab's fault - not mine!

Joodles62 05-14-2008 11:58 AM

Re: diagnostic tests advice
Thanks Rumpled. I think I would 'tick them off' at the hospital if I take my own ice bags, but then my daughter is more important than what they think of me!

I am already not very popular because I have done a fair bit of research on the internet about what could be wrong with my daughter and I am sure they hate that.

Interesting what you say about Vitamin D. Our National Health Service in the UK seem to stick to fairly rigourous (and outdated?) guidelines and in some cases (ours) aren't very forward thinking. It really is like banging your head on a wall. I will press for this blood test again and wait for her to start laughing!


Joodles62 05-15-2008 01:11 PM

Re: diagnostic tests advice
Short Synacthen test tomorrow morning. (Testing baseline ACTH and cortisol) Just a quick query. Should my daughter eat or drink before the test? Different websites give different information. We have been told by hospital ok to eat and drink but just want to check. Thanks

rumpled 05-16-2008 12:10 PM

Re: diagnostic tests advice
I always did all my tests fasting and even now, my doc wants ACTH and cortisol fasting... but I never did this particular one since I came by my "addison's" via surgery... Hope someone replies.
Good Luck!

Joodles62 05-22-2008 08:41 AM

Re: diagnostic tests advice
Thanks for this rumpled. We have had the results of the Synacthen Test.

Time nmol/L cortisol

0 301

20 480

35 497

50 480

65 301

There were no reference ranges. Our doctor says they are normal, but we were under the impression that the cortisol had to at least double? We requested that our doctor test baseline ACTH, but the lab decided not to because my daughter's cortisol was 'normal'

Does anyone have any ideas? Should we try to get ACTH tested? Could this still be significant?


rumpled 05-23-2008 07:50 AM

Re: diagnostic tests advice
In my quick reading, it means that her adrenals are ok, but ot doing ACTH means they did not check her pit function at the same time.

I just have to say that I flat lined many a gold standard test (DEX-CRH, dex suppression, any dex really...) and I was still sicker than a dog. But docs look at numbers and not at the sick patient failing in front of their eyes sometimes. I had to look for a doc that could *see*.

Joodles62 05-25-2008 11:46 AM

Re: diagnostic tests advice
I know what you mean rumpled, doctors often only look at the test results not the patient.

We have read on UK websites that a normal result for Synacthen must be at least 550 nmol/L at 30mins and that it should increase by at least 200nmol/L from the baseline cortisol. This would mean that my daughter's test results do not meet these two criterias. Could this indicate adrenal insufficiency, or something else?

Thanks again

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