addison diagnosis

[jo]

I could really do with some advice. I am in the uk, and have to go through the strange system of the nhs!
Like the last thread I have been unwell for some time. I started feeling really unwell last autumn which became worse this year.  
 I eventually had the acth test arranged by a  neurologist. I was told the results came back bordeline, but I was then told by my cousin ( a consultant in the same hospital) who actually saw the results that it was  definitely abnormal. I have then waited another 3 months for another test and a whole load of other blood tests which I am now waiting the result for.
Symptomatically I have nausea, dizziness, feel very cold, low blood pressure around- 85/50. I am a small person anyway but have lost a lot of weight. I have a lot of joint pain in my neck and back, I am not tanned but have dark scarring. I also get weird muscle weakness and numbness in my arms and legs , pins and needles etc. I also get a  lot of strange stomach pains. I has a sudden episode when I really could nt feel my arms and legs properly and was admitted to hospital last easter. They thought I might have ms or  had a stroke but I had a head, neck, spinal cord mri ( as i had a bad car crash 2 years ago and this was a possible spinal problem) and these were ok.
Anyway I wondered how other people felt during and after the acth test and whether that indicates anything.
I am now waiting for all the new test results. I have not actually seen an endocrinologist yet.
Does  anyone associate the development of  addisons after a prolonged stressful/ traumatic time in their lives?
I would really appreciate some advice on what to request next,  how to interpret any results.
many many thanks
 

[ShannonD]

Jo
I am sorry to hear that you are not feeling well, and I hope one way or the other you begin to feel better.  Addison's can be tricky to diagnose (I think you can have suboptimal adrenal function and feel miserable for a long time before the adrenals completely go out on you)

What you are going through sounds rather suspicious for possible addison's.  The hyperpigmentation can be pretty subtle, especially if the skin is not sun exposed, or you could have a pituitary problem.  Do you have any electrolyte (sodium, potassium, calcium) abnormalities? Do you have the results of your acth test?  If they checked your thyroid, did they check your T4, in addition to TSH? (in case you have a pituitary issue)

Yes, I think periods of stress will stress the adrenals.

Did you have a head injury when you had this accident?

Hope you start to get some answers, and feel better soon.
ShannonD

[jo]

I think the t4,tsh and  is being checked.I am not clear if the electrolytes are being checked.
I have also been a coeliac for about 10 years. If I am ever hungry, the  only thing I feel like eating is salt(y).  
The problem in England is that you are never given a copy of  results by a hospital or consultant, but  I will attempt to get a copy of all the results.
 I did not have a specific head injury  with the car crash but really bad whiplash -neck, back, ribs and arm  were injured. It was a head on collision at 55mph ( not my fault!) so my head hit the air bag very hard. My head felt extremely strange though for a while like it had been shaken very hard. (My son was injured in the crash so he was obviously my main concern during and afterwards.)
I guess after 2 pregnancies I know when my body is feeling normal and when something really strange is happening. I am 34 and feel like an 80 year old these days! I am feeling not only really tired and unwell, but really frustrated.  As one of your threads said it seems  addison/ adrenal problems are one of those medical conditions that have to be battled to be treated  by the patient.

[ShannonD]

Jo,

What a pain that you can't get your lab results! It would be very helpful if you could.
Technically a family practice or an internist should be able to help make the diagnosis, but I think you could find a lot of people on this web site who have had no such luck.
Some of the folks on this web site have seen Dr. Friedman in Los Angeles, on his web site goodhormonehealth.com, under "contact us", there is a Physician List, of doctors who have trained with him.  
I do not know where you are, but here are the UK docs listed

Endo
Univ of Birmingham
Institute of BioMedical Resear
Birmingham, B15 2TT United Kingdom
Phone: [phone]
Fax: [phone]
Email: [e-mail]
Clinical Practice Concentration: Adrenal Diseases and Disorders, General Endocrinology
& Metabolism, Pituitary Disorders
Ashley Grossman, FRCP MD
Professor
Dept of Endo
St Bartholomew's Hosp
West Smithfield
London, EC1A 7BE United Kingdom
Phone: [phone]
Fax: [phone]
Email: [e-mail]
Clinical Practice Concentration: Pituitary Disorders, Ectopic Endocrine Syndromes
Peter James Trainer, BSc FRCP MBChB MD
Senior Lecturer
Dept of Endo
Christie Hospital
Wilmslow Road
Manchester, M2O 4BX United Kingdom
Phone: [phone]
Fax: [phone]
Email: [e-mail]
Clinical Practice Concentration: Adrenal Diseases and Disorders, Pituitary Disorders,
Thyroid Dysfunction

DId you  loose a lot of blood with any of your pregnancies?
Hope you are feeling better.

[Idaho Dusty]

Jo,

There's a lot of variation in interpretation of the ACTH stim test results as well.  I think many doctors who look at the results may not have much of a clue about how to interpret them despite a multitude of studies to which they have access.

If there's any way you can get your results and post them here, that would be great.  I have lots of journal article and abstracts and book excerpts that can help us all interpret your results.

:) Dusty

[jo]

Hi
Thanks so much for your message. I am going to contact one of the specialists on the list. It seems amazing that specialists can vary so much!
In terms of the first acth test I had, the I think it was around 200 rising to 300. The  endo ( who I have not actually seen) said it was borderline. Would you agree? My cousin who is a renal consultant considered it abnormal. Symptomatically the neurologist who ordered the test thought it was addisons.  
So anyway that was in May! I am still waiting for any news 5 weeks after having these new tests.
 I wondered in terms of accuracy and interpretation what other factors could effect the acth value?
Many thanks
J

[ShannonD]

Jo
So glad to hear from you.  I recalled your post and was wondering if you were able to find the help you need.  

The results are reported differently in UK versus US (UK uses nmol/L units, and US uses mcg/dL). I do not know how to do the conversion.  Nonetheless, with a quick search I found at least one journal article which indicates that 200 to 300 is an inadequate adrenal response.

It seems to me that you have at least 2 doctors opinions that you have adrenal insufficiency.  So most likely you do.  I hope you can find someone (a doctor) soon who can treat you, so that you can feel better.

Hope you are better SOON!!
Shannon