Anyone had an Addison's test?

[clarella]

Just that really.

What to expect, what outcomes may be and if they consider secondary and tertiary Addison's possibilities?

[TheSpottedZebra]

What do you mean specifically?

There are tests to find out the level of certain hormones or chemicals in the blood or other fluids, and other tests to try to find out if it's primary or secondary -eg the synacthen tests...

[TheSpottedZebra]

Ooh, sorry, that sounded quite aggressive. Wasn't meant to!

[clarella]

No prob!

I'm going to be tested for Addison's disease, an endocrinologist wants to rule it out but did say some symptoms are indicative. After looking I think I can see why, though no pigmentation which, as far as I can tell, could be secondary if it is.

I'm just feeling inquisitive as to what kind of outcomes it might be etc. and if anyone's symptoms were similar to mine.

I'm breastfeeding so also want to know if it's ok or not.

[katiebrusby]

Hi I have primary addisons so have had the test. The test is fairly simple if its a synacthen test, they take blood, give u an injection, wait a while then take blood again. You may feel rubbish for a while after or you may not it varies from person to person, personally I was quite ill after mine.

Once they get the results they decide the course of action, I take hydrocortisone to replace cortisol and fludrocortisone to replace aldosterone however some people don't need fludrocortisone and it depends how much youre producing as to how much hydro you need.

There are other ones out there such as prednisone.

When I was dx I didn't have pigmentation at all they tested me more cos of my Bp and dizziness etc, not everyone gets all the symptoms. However it is quite a serious illness so its definitely best to rule it out

[katiebrusby]

Also I'm not certain on this but I think secondary tends to be more if its been caused by a tumour or overuse of steroids in past or something, if its your body doing it I think it tends to be more primary. Don't quote me on that though cos I'm not 100% sure!

[katiebrusby]

What symptoms do you have?

[clarella]

Oh thank you Katie! Been feeling rather lost.

I will reply later when toddler asleep. Interesting about the lack of pigmentation; I've none.

[magso]

I had the synthesin test. It is as Katie says. They take a small sample of blood (I think to measure cortisol levels). Inject (bum or top of leg) with sythesin, wait a certain time (can't remember exactly possibly 15 - 20 minutes) after which they take a second sample and send both to the lab to compare cortisol levels. The tests showed I could produce cortisol so don't have Addisons, just low cortisol levels normally. I felt all hyper (my old self was hyper!) and as if I could conquer the world for a while after the test, followed by some less good days- which is how I often am. (I have postural hypotension and postural tachycardia as part of CFS).

[clarella]

Thanks magso. Sorry to hear you have cfs; is it also POTS?

My symptoms; tricky. I'm hypothyroid but very petite and slim. I loose muscle and weight when I need more thyroxine, slight changes in my dose make a big difference.

A year on sertraline appears to have slowly eroded my muscles due to slightly altering how thyroxine has been processed/absorbed by body. I think this is what has happened. So aches and pains, fatigue, pins and needles, a strange tugging pulling sensation internally. A thing where my bones seem to itch and fizz - like rls in whole body. Whole body swelling feeling (can't see anything) and lately sensory loss in fingers and toes, though this has returned the last few days. I've regained some muscle and strength after around 9 weeks off work. My insides often ache. Often have days where my brain is very foggy and I'm very cold. Heat seems an issue; I feel off after a hot bath or shower and have to lie down, struggle to get warm other wise and don't cope so well in heat. I do feel out of it and dizzy often but don't faint.

However I'm currently slowly feeling better after slowly building up strength and lowering sertraline dose. I'm not sure I'd recover from Addisons like this? And normal me can be quite energetic. I seem to run out of steam easily though. I found improving muscle strength before pregnancy helpful. I'm quite hypermobile too.

So magso, if you naturally have low cortisol would they not treat it? That must be frustrating?

I must say I've found beta blockers very helpful for years; I wonder if they lower stress for me so - if it were a cortisol issue - I don't need as much? I found that I felt less tired at the end of the day if I had had one.

I have found - through recent experience and mumsnet - that vit b12, ferritin, vit d and folate are v important for hypothyroidism. I believe this is primarily as they support muscle strength and growth amongst other things. I'm currently looking at 1.how to get gp to test these (or the lab!) and 2. How to keep them up in me.

Thanks for your help

[clarella]

I'm breastfeeding; the fact that my periods haven't returned (lo 2) seemed to perplex the endocrinologist and he didn't comment on my bp when I stood up after testing it sitting. He prodded my tummy a lot too but made no comment. I've recently had a lot of ache under my rib cage.

Tbh I think I've had b12 and ferritin issues on top of not agreeing with the sertraline (which can cause muscle issues) which are all slowly recovering. But I guess we'll see!

[magso]

I have some similar symptoms (although no recent pregnancy) and am not hypothyroid. I had low B12 and vit D levels and have found it helpful to supplement these. I was diagnosed with CFS - with POTS as part of it . I have got slowly better! I hope you get to the bottom of your weakness Clarella. It must be very difficult with 2 little ones.

[clarella]

Ah only one lo who is two!

May I ask how cfs was diagnosed and how you supplement b12?

My concern is whether I can go back to work. But I feel fitter day by day since I've started coming off sertraline. Fx it's 'just' that. Bit of a fucking big side effect though if it is. I've been rendered totally disabled at times. I've been eating more red rare meat and taking berroca too.

[magso]

I use a B12 sub lingual mouth spray, from a well known health food store. I was diagnosed CFS after various tests by the CFS lead clinician who here is an endocrinologist. Then I had some sessions with staff from the CFS clinic to help me learn to pace myself. My B12 and D levels were checked by my GP but I asked to have them checked.

[midori1999]

I was tested for addisons in the summer. I felt a little shakey after the injection, but other than that I was fine.

[clarella]

Midori I assume you were ok or have you been put on treatment?

[clarella]

Thanks magso, I guess I'll be chasing a cfs diagnosis if things do not improve. I do find pacing extremely difficult as if I do have energy I seem to over do it.

[midori1999]

I haven't got addisons, but I was diagnosed with another autoimmune disorder, insulin antibody syndrome. My only symptom was severe hypoglycaemia.

[clarella]

Goodness midori, how is it managed?

Katie, I wondered what symptoms you had? Were they ever variable?

[katiebrusby]

Sorry I've not been on here in a few days! A lot of my symptoms were mistaken for other things. I have b12 deficiency and celiac disease which is an indicator as if u have one autoimmune disease you're more prone to others. It was mostly dizziness nausea extreme tiredness tummy ache a lot. My symptoms are quite bad recently as I've had an adrenal crisis however once diagnosed I had no problems for 7 years. It took months for them to test me for it though

[katiebrusby]

A lot of people lose weight to but I actually gained slightly before diagnosis

[clarella]

Sorry to hear you've been unwell.hope you're starting to recover?

I've had faint nausea recently; in as much as I'm usually very hungry first thing but am now not, and at times just don't fancy food or it doesn't taste a great.

I've had constant odd aches in my torso for a long time. Lower back too, not really muscular,I get that too and it's different. Fatigue and constant aches basically.

Prior to diagnosis was it a steady decline or did you go up and down for a while?

I'm booked in on Wednesday morning. I'm trying not to see it as the answer to all these things but it's hard ! I guess if it's all ok I know I just got to keep trying to build my muscle strength and if I struggle to return to the gp for further investigations.

I think I fear being told my cortisol is a little on the low side but not enough to treat! I'd pretty annoyed by that!

[clarella]

I've regained the weight I lost but I've been resting and off work.

As in - I went from 8.4 to 8 and now back to 8.2. Not much to shout about. I've regained some muscle I lost in sept but not enough to fully cope with a lot of things. I feel it's my proximal muscles that are affected most.

[katiebrusby]

I was pretty up and down but still am to be honest. I am finally starting to get over it but its taken quite a while!

It seems you have a lot of the symptoms that I get, the pain in my back isnt muscular either it feels like someone is squeezing my kidneys really hard like a throbbing.

It is best to try not to think this is th ultimate solution as addisons is very rare and to be honest as much as its good to know what's causing it I wouldnt wish it on anybody it really is life changing no matter what anyone says.

If it is then there is obviously a treatment route but as I say there are a lot of things that may change, I was fine for 7 years but in the last 3 months I've realised a lot and my life has changed an awful lot, I now work part time I carry medication and stuff literally everywhere I dont drink I wear a medic alert bracelet I have to declare it all over the place.

I've probably just terrified u but in all honesty as much as my life has changed now I'm getting it under control again I'm actuwlly better for it I'm much more aware of myself and my limits and I take miles better care of myself cos I have to. The only real issue I've got is my weight has gone up by 3st since being on steroids cos they make u wanna eat loads! And cos of the joint pain I struggle to exercise.

Dont worry about wed though ul b fine and if u do have it then y can get on top of it and if not then get back onto the doctor and get further investigation done for sure cos there's obviously something wrong

[clarella]

I'm so sorry Katie It does sound tough.

I guess I'd just like answers and am impatient. My husband isn't very supportive. Tbh it could be a combo of thyroid and fibromyalgia; drs working through the options and exclusions. It really could be due to the sertraline too.

Thanks again for your advice!

[clarella]

I'm also sorry if I gave the impression I want to be diagnosed with it. I've read about it and yes it sounds an extremely difficult condition.