Diagnosed Addison's Disease

[Deecam]

Hi everyone. I haven't posted for a while but have kept up with news by reading your posts. I've finally been diagnosed with Addison's disease so no wonder my thyroid was not working well! I would like to thank everyone for all your help and support in my journey to understand and finally get a diagnosis. I'm coming to terms with this diagnosis and have joined the Addison's self help group. As I am also hypothyroid I dare say I may be back here continuing to optimise my treatment once treatment for Addison's is stabilised. In the meantime I want to again thank everyone and wish you all the best of good health and good fortune. 😃

[Hidden]

I'm sorry you've been diagnosed with Addisons, I have secondary adrenal insufficiency due to a problem with my pituitary so understand what you're dealing with. If you are on Facebook then join the UK Addisons info & support group as there are some very knowledgeable people on there, who can give some great help & advice.

[Deecam in reply to Hidden]

Hi PaulineS, Thank you for your post. I am so sorry you have secondary adrenal insufficiency and I hope you are getting the help and support this difficult condition requires. I am not on Facebook but will try and join the UJ support group without - if not then I will join Facebook, perhaps I will see you there. Take care of yourself.

[trelemorele]

Can you tell me how you become diagnosed, what tests and results were done. What were your symptoms if you don't mind, thanks

[Deecam in reply to trelemorele]

Hi Trelemorele, I don't mind sharing at all. I was diagnosed hypothyroid in 1996 and had to see a private clinician to get my diagnosis. My GP accepted the diagnosis and I have been supported ever since but never felt well. Gradually over the years I became more exhausted, recovery from illness became more prolonged. Recovery from a chest infection took 8 weeks and I was left constantly breathless. As I have asthma my GP insisted that was the cause of the breathlessness despite my saying "this isn't asthma". Since January I started to see a private clinician and had private tests first via Genova and then Medichecks. Thanks to the amazing support and information on this site I realized that I possibly had conversion problems of T4 to T3. I've only ever been prescribed T4.

Increased fatigue, muscle and joint aches, frequency of physically being sick at night increased to nearly every night, frequency of migraines increased, hissing in ears, becoming dehydrated, excess intake and craving for salt, struggling to get up in the morning but becoming more awake after 9 in the evening. Then in May the worst migraine ever, dizziness, nausea, noise and light sensitivity took me to my GP who was concerned I'd had a bleed on the brain and sent me by ambulance to hospital for a ct scan. They also did a lumber puncture (both negative) All this whilst having the worst migraine ever! GP put me on anti convulsants to try and control migraines. This worked but I was left with constant headaches and nausea. At this point I received my latest results from Medichecks. I posted them on this site and due to the encouragement of a group member I showed my GP and asked for a cortisol test. I had at that point given up, feeling so poorly, and if not for that encouragement I don't think I would still be alive.

My advice would be check your symptoms, get a cortisol test done privately then approach your GP if your test result are low.

Phew sorry Trelemorele I hope I haven't gone on too much. Any questions any time please do not hesitate to ask. Wishing you well with your journey to health and wellbeing.

[trelemorele in reply to Deecam]

Was is saliva cortisol at first?

Was it below the range or just low levels?

Did you do synacthen test after that and what Was the result?

What treatment did you get on diagnosis?

Thanks for sharing.

[Deecam in reply to trelemorele]

Hi Trelemorele

January 2018 Genova Diagnostics, Salivary Cortisol and DHEA results

Cortisol

Sample 1 waking = 0.88 (nmol/L 2.68-9.30)

Sample 2 12.00 = 2.59 (nmol/L 0.75-2.93)

Sample 3 16.00 = 0.83 (nmol/L 0.36-1.88)

Sample 4 prior to sleep = <0.19 (nmol/L <0.94)

DHEA

<0.03 (too low to record) nmol/L 0.05-0.32

June 2018 Medichecks cortisol saliva tests 4

1 = <1.5 (nmol/L 6.00-21.00)

2 = 3.25 (nmol/L 1.50-7.60)

3 = 2.110 (nmol/L 0.00-5.49)

4 =< 1.5 (nmol/L 0.00-1.99)

NHS cortisol blood test

= 45 (nmol/L 150-600)

Phoned by GP who was very concerned, started me on hydrocortisone and an urgent referral to endocrinologist. I do not yet have a copy of the multiple blood tests the endo did which included;

Adrenal antibodies, blood cortisol + paired ACTH with urgent lab spin, LH FSH Prolactin and a few more I can't decipher! She did not do the synacthen test which surprised me. She phoned me to tell me I had Addison's but I have not been supplied with any further information.

I've had hydrocortisone increased twice to 35mg and am shortly to start on Fludrocortisone.

If you are offered an NHS blood test what they will not tell you is: have the test at 8.30 or 9.00 at the latest. Drink only water before hand and do not take thyroxine beforehand.

Hope this helps.

[trelemorele in reply to Deecam]

Thanks, much appreciated

[trelemorele in reply to Deecam]

Hey dee

Sorry to bother you, do you remember your symptoms before Addison diagnosis. I read some of your previous posts (i.e debilitating migraine) but if you could see if remember more I.e weight situation or appetite or fatigue or reaction to thyroid medication or etc whatever you may think was there. Thanks

[Deecam in reply to trelemorele]

Hey Trelemorele no bother at all, apologies if I waffle on! I was always tired as a child, I would go out to play and fall asleep. All of this was put down to the fact I had had double pneumonia as a baby which was misdiagnosed and not treated properly hence scarring on my lungs and at age 2 years a diagnosis of chronic and severe asthma. Around age 8/9 the puppy fat arrived and never left. I've been on a "diet" most of my life and the only way I could lose weight was to eat less than 600 calories a day. So always tired, overweight and not able to excercise due to the severity of asthma.

From late teens I always felt there was something wrong with thyroid and periodically pitch up at GP for a test to be told it was normal. Hormones were not producing cycles, something was obviously wrong. A laporoscopy deemed all was ok just a "hormone deficiency" no treatment. Unable to have children despite fertility investigations.

So life long tiredness which progressed into exhaustion, weight problems, asthma and allergies, food intolerances, slow pulse rate average 60, very excessive use of salt (exactly like my father), struggling to wake in the mornings, more awake and active after 9 at night, migraines over years progressively worsening, including motion migraine which was always called travel sickness, impatient with self, low mood, swollen ankles, swollen tongue.

In addition just prior to referral, lightheadedness, postural hypotension, noise and light sensitivity, exhaustion, dark circles under eyes, very breathless but not related to asthma, muscle and joint aches, migraines, nausea, vomiting 5 nights out of 7.

I hope this is helpful and I truly hope you are not experiencing these symptoms. If you are, good luck with getting the help you need and take care.

[trelemorele in reply to Deecam]

Hey dee

That was very helpful. Thanks a lot for sharing and so extensively too. Very much appreciated.

I asked for you to share as I've noticed that symptoms they (the doctors or medical websites) often lack of real life experience symptoms. I can definitely say it's in like that in thyroid case. And reading your post same apply to Addison or low cortisol symptoms. Your life knowledge and symptoms you've experienced are extremely valuable - to me for sure.

I can certainly say I can relate to a lot of your symptoms.

Thanks again 👍😊

[Deecam in reply to trelemorele]

Oh Trelemorele I'm so sorry you can relate to a lot of my symptoms, they combine to make life challenging to say the least.

Anytime you would like any further info, moral support or just want to vent please do post me. Look after yourself.

[trelemorele in reply to Deecam]

Thanks a lot!

I'll keep that in mind thanks.

I've had my salvia cortisol done and it's very low throughout the day. I'm waiting for short synacthen test to be done in few weeks time.

But my blood cortisol was always within the range so don't expect really a solution to the situation.

Anyway, that was very informative from you, thanks again

[traceybarker]

Hi there sorry about that how did you get diagnosed with it if you don't mind me asking as I had a 24 urine test done an it came back very high so refferd me to underaclogist thanks

[Deecam in reply to traceybarker]

Hi Tracey sorry I'm not clear which post you're responding to! Are you asking how I was diagnosed with Addison's?

[traceybarker in reply to Deecam]

Yes hun i just wondering x

[Deecam]

Hi Tracey it's been a long story of "something not right" with my hormones for most of my life. 20 years ago I was diagnosed with under active thyroid but was always tired even with treatment. Over the years it worsened until last year when I was very poorly with light headedness sickness and dreadful migraine. I'd been doing my own private tests and my cortisol saliva test came back very low so I showed it to my GP who was trying to sort out my migraine. He agreed to a morning cortisol blood test and when they got the results back they panicked, put me on hydrocortisone immediately and did an urgent appointment to an endocrinologist. She did more blood tests and confirmed it was Addison's disease. Does this help at all Tracey? Please feel free to ask anything and if I can help I will. I've read some of your previous posts and I'm so sorry you've been going through such a dreadful time. Take care x

[traceybarker]

Thanks for replying to me what is Addisonsdisease then xx

[Deecam in reply to traceybarker]

Hi Tracey it's a rare disease where the adrenal glands start to fail to produce the hormones cortisol and aldosterone, both of which are essential for life. Treatment is with Hydrocortisone to replace cortisol and Fludrocortisone to replace aldosterone.

[traceybarker in reply to Deecam]

Hi there dose that mean I could have this thanks hun x

[Deecam]

Hi Tracey I've had a look back through your posts and see that you posted that your adrenal/cortisol test was high which would indicate the opposite of Addison's if anything. Possibly looking at the other end of the scale which would be Cushings. It may be that your levels are high on the range but not high enough to be Cushings. Do you have the actual reading/number? If not and you are worried about this you could ask your doctor for a cortisol test and make a note of the result. Best wishes Dee x