LUPUS UK
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Secondary Addison’s

I wrote a post a couple of months regarding cortisone levels. I now understand what is going on. I have secondary Addison’s disease, I am now depending on hydrocortisone daily. 20mg is my daily dose but this needs adjusting if I’m ill, sick, stress etc. Since being diagnosed I’ve had one adrenal crisis after a sickness bug.i ended up in hospital via a 999 ambulance. I now understand the importance of knowing your own body and how your illness works on your body. Does anyone else in the group have secondary Addison’s?

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Hello Jen50,

I'm waiting for an endocrinology assessment after a year of feeling extremely fatigued, coupled with daily episodes of flushing, shaking and nausea. My rheumy says there is no chance of any adrenal problems as I have only been on prednisolone for 18 months. However, I recently did one of those medichecks home testing things, which showed my early morning TSH levels to be above normal limits, and my morning cortisol to be well below normal. Its all a bit suspicious! I'd be interested in how your adrenal problems showed themselves? Thanks x

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He's unaware that the most common cause of adrenal problems is autoimmune damage to the adrenal glands then? And if the adrenal glands are dodgy anyway, it doesn't matter how long you've been on pred - what a silly thing to say without proof.

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Yes, this is my feeling, PMRpro. I raised questions about investigating adrenal issues at both my reviews this year, and both times he dismissed them. But I was so bolshy that eventually he agreed to an endocrinology referral just to get me out of the room.

I have changed GP in the last couple of weeks in the hope that he will be a bit more proactive in chasing this down than my last one.

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This all began when I was becoming confused, my blood pressure was so low I was collapsing on a regular basis. Then things started to get worse as I started having seizures. This is when they started to investigate my symptoms. I was admitted into hospital for 2 weeks when I had an MRI, and a a load of blood tests. One of which was done by an endocrinologist, I can’t remember the name of test, but it checked the levels of cortisol, my levels were 100/ it should be around 400. I was started on hydrocortisone 20mg daily. I feel so much better. The blood test will be repeated in January. I hope you get some answers, keep pushing as that’s the only way you get any where.x

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A synacthen or ACTH stimulation test probably.

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It was synacthen test , it will be repeated in January.

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Thanks. It must have been so hard to cope with feeling that unwell - and scary that it was only when you began having seizures that proper investigations were done. Very glad to hear that you are feeling a lot better now.

My cortisol level on waking was 2.7, when normal values are 6 - 21, so something is wrong. Whether it is anything like your problem, I don't know, but it would be nice to think I wouldn't have to start fitting before it is properly investigated! x

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What was the Medicheck called, if you don't mind saying? I want to do my own test at home too?

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Medichecks are one of the ones recommended on the ThyroidUK site. They also suggest a couple of other companies that offer very similar services, so if you want to compare the different companies, just go to the ThyroidUK website for details. Unfortunately, they are all quite expensive, so it was a one-off for me! I chose the 6x saliva cortisol and the "Thyroid Check Plus". The cortisol results arrived the day after I posted them back, and the thyroid results 3 days later. Here's the medichecks website medichecks.com/thyroid-health

x

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Thank you so much. :)

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Hi Jenn50!

I'm so sorry that you love been having such trouble! I was diagnosed with Addison's disease a couple years ago. I find it very difficult to control bc of my Lupus. Ironically, my husband also has Addison's disease and has had it for 17 yrs. Since Addison's is pretty rare you can imagine how odd it is to have two people in the same household have it. If anyone has questions about living with Addison's and Lupus let me know

To Whisperit,

Your Drs statement was asinine! Addison's is considered an autoimmune illness and the first thing most Drs tell you is that if you have one autoimmune disease the odds of getting another are pretty high. Actually, if I'm not mistaken, Addison's can be brought on by long term steroid use. It can be a very dangerous disease, more so bc it's rare and a lot of Drs in emergency don't know what it is so you end up being treated improperly. Please fight your Dr for the proper tests or just find a new dr.

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No, not mistaken although it is termed secondary Addisons as opposed to the a/i variety which is primary.

But yes - asinine seems a very apt description!

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Thanks bmagrl,

How unlucky to have a double dose in your household, but I guess each of you now has an on-site expert to compare notes with!

Yes, I will be pressing this as hard as I can in the coming months. I have no way of knowing what is really going on atm, but there is some sign of an auto-immune process involved, as my thyroglobulin antibody level is also raised (824 compared to reference range of 0-115). Having to wait another 3 months or more before I see a specialist is very frustrating. x

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Yes I have Addisons as well. It was diagnosed as Adrenal insufficiency about five years ago as I was getting adrenaline rushes during the night causing Coronary Artery Spasms that put me in hospital six times. Once I was on daily cortisol the rushes ceased as did the spasms but I still have microvascular angina and a seronegative Sjogrens or Lupus like disease. I am on three monthly Depot Medrol and oral Pred and hydrocortisone.

I have biliary and pancreatic inflammation too and gastritis so it is really hard for me to tolerate the steroids but I have to have them.

It is a really difficult business getting a balance and controlling it all. I have had some scarey episodes of Adrenal crisis too after a severe infection and also after a couple of accidents, one when I cut my hand badly.

Like whisperit some days I feel my levels are all over the place with flushing episodes and dire weakness. My best time was after major neck surgery removing a disc in my neck when I was given a large slow release dose of dexamethasone to last three months. This is a very strong steroid usually used primarily by neurosurgery but I felt so good for many weeks with no sign of the Addisons.

I havent seen an endochronologist for three years. They just leave Rheumatology to deal with it. x

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Yes, I had to look for the silver lining to both myself and the hubs having Addison's. It really did help me. It took months for my husband to get diagnosed. The Drs were trying but it's a very rare disease and it ended up being a med student doing his rounds with my husbands main Dr who recognized the symptoms. He recognized it easily bc he had just recently studied it:)

A few years ago, when I first got sick, I recognized some of the symptoms pretty early on. The problem was that I didn't have the two most recognizable physical symptoms: weight loss and a darkening of the skin. When first sick my husbands skin tone darkened up tremendously and he looked like a skeleton. I, on the other hand, gained weight and ended up getting brown spots all over my face and a brown ring around my lips. That made it difficult for me to convince a Dr to do the proper testing. The problem was I was also dealing with a thyroid problem and what ended up being Lupus. Those illnesses made diagnosing anything difficult. After switching Drs 3 times I finally got a good one and my initial morning cortisol tests showed my level at 2 which is way lower than it should be first thing in the a.m. After that the acth stim test confirmed.

Between us both, we have gone through around 7 different endocrinologists until we found a good one. The problem is that most endos have the "book knowledge" of Addison's but hadn't ever had an actual patient with it. So other than telling us to take steroid they were no help. I was determined and we kept trying new docs until we found one that was an encyclopedia of Addison's and he had several patients with it so he was aware that each patient is different and their bodies handle the disease different:)

Unfortunately when you have multiple illnesses the Drs want to blame your symptoms on whatever current illness you have. I call that lazy doctoring;)

Hang in there and research as much as you can! Make notes of your symptoms that way you can better advocate for yourself! Fighting for myself was how I finally got the Addison's diagnosis as well as the Lupus a few months later. Now I'm getting help for both so I'm hoping things continue improving

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