Is there a chance this could be Addison's disease?

[BlackInk]

Hi

I feel like a hypochondriac searching for a diagnosis, but I've been feeling like shit for years now and getting worse. Drs are non-plussed, either suggesting menopause or depression...

I'm 45, slim, busy, 2 primary-school-aged children.

Fatigue, sometimes so bad I can hardly speak
Daily nausea and stomach problems, sometimes debilitating
Periods stopped suddenly 2 years ago
Difficulty concentrating
Often feel spaced out and dizzy (blood pressure always low)
Definitely losing weight without wanting to
Zero libido
Grumpy and lacking drive
Pain in joints and general weakness

I've had a read online and don't have any areas of darkened skin or increased urination. I work full time and appear to manage on the surface, but am a mess in private!

Two close family members have type 1 diabetes and my mum had a pituitary tumor in her later 40s.

I've had various blood tests over the past few years. Always lowish B12, D and iron. Thyroid ok.

... I know. It could be anything. It could be nothing. I just don't want to feel like this anymore. Will the doctor just think I'm attention seeking??

What is your BMI, height and weight?

Hi I would go to your doctors and say you have been researching and you are concerned about addisons disease. A family member of mine passed away from this and it was something that could of been helped with the right medication. Some of her symptoms were weight loss, fatigue and aches and pains and low blood pressure. Im not saying that you have it but no harm in getting checked out.

My BMI is about 19. I don’t have scales but recon I’ve lost getting on for a stone in the past year.

I’ve listed all these symptoms several times at the drs. Have had an endoscopy which just showed small hiatus hernia.

Has your GP done hormone tests?

I have had tests which confirm menopause, no investigation into why it was so sudden/early though...

Your symptoms do sound menopausal, surprised your GP hasn't suggested putting you on HRT.

As it’s been going on for so long I’d be surprised if it was Addison’s , when I was diagnosed i was ill over a period of 5/6 months and lost 4 stones in that time , I eventually diagnosed myself and saw an endocrinologist privately to get it confirmed as despite the best efforts of my GP had I waited for the NHS I am fairly sure I’d have been dead . Fortunately I have lots of experience with it as my mum has had it for over 50 years . Hope you get to the bottom of your problem.

I have been struggling with all the same symptoms as you for a couple of years ( I am the same age as you, same BMI). I have had iron infusions, I was tested for coeliac disease, I had Vitamin B injections, nothing really made a real difference.
But I started HRT two weeks ago and I feel AMAZING! The brain fog has gone, joint pain has gone, I’m less irritable, I have a better appetite, I have energy after years of fatigue.

I am still perimenopausal but my GP was willing to give HRT a go - it has changed everything. From what I understand, if you have already gone through menopause at your age, you should be on HRT until you are at least 51 years old for bone health reasons alone, never mind the other effects of menopause. Go see your GP!

Sounds alot like ME/CFS. The periods halting is supposedly a warning sign you're about to get it. Not sure how sound that is but I would research that condition too OP and see what you think.

I was thinking ME/CFS too.

When you say stomach problems, do you mean bowel problems?
If so, have you or your GP thought about IBD? That could fit most of your symptoms.

www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/what-are-the-symptoms

Thanks for your replies everyone.

I've been using HRT patches for several months, but haven't noticed any real difference in how I feel.

Stomach problems are rubbish appetite, nausea, indigestion and stomach aches. Not the same every day and sometimes worse than others. Bowels are pretty much ok. Slightly erratic but probably due to regular days when I feel too ill too eat properly.

Ugh. Dr was so dismissive last time I went, I really don't want to go back. But I really don't want to keep on feeling like this either.

I'll read up on CFS/ME/IBD.

Thanks again :)

You say some of your vits and mins are low. Are you treating those?

Also, you say your thyroid is OK. If I had a fiver for everyone I know who has been told that, I would be a rich woman.

Get a print out of your blood test results over say a two year period and the knowledgeable people on here will help you look at the whole picture and figure out what's going on.

Have you asked for a referral to an Endocrinologist OP?!

Here's an article that I took to my GP because I knew there was something more to the cfs/me diagnosis I had been labelled with.... it turned out that I had Hypopituitarism(in my case caused by significant brain injury many years before).

www.meassociation.org.uk/2014/05/the-brain-injury-that-could-be-behind-30000-case-of-chronic-fatigue-mail-online-18-may-2014/

Damage to the pituitary is not limited to the symptoms in the above article.

Low blood pressure and weight loss can be related to low ACTH and low cortisol.

I would definitely ask GP for a referral to an Endocrinologist just as a process of elimination.

Also my GP told me not to get my hopes up as she had never seen anyone with Hypopituitarism caused by head injury only by tumour where pituitary had been removed.

GP was really shocked when they were told of the dx! No one was more shocked than me when the Endo told me as I had some very bad experiences with GPs over a long period of time!

Google for a pituitary specialist in your area and ask to see that particular one(that's what I did and was prepared to contact them for private appointment if I did not get an NHS referral).
There are some really good ones who will do the proper dynamic testing as well as blood tests.

Hope this info helps and Good Luck in finding some proper answers.

Here's a link to the Pituitary Foundation website as well which may be helpful

www.pituitary.org.uk/information/pituitary-conditions/causes/

Thanks so much butterfly56 - I'll have a proper read and pluck up the courage to go back to my doctor. Interestingly, all of this began after the birth of my 2nd child. No history of head injuries though.

I'm taking over the counter supplements for low iron and B12. Dr said they weren't low enough to cause symptoms.

I've applied for copies of my blood test results a few weeks ago. I'll chase that up!

I've now had for the past few days a horrible stabbing pain in one temple and numbness on the same side of my face. I literally feel like I'm falling apart - it's something different every week

Thanks again!

Ok, I've finally got access to my blood test results.

Most things have come back within range, some only just.

But my B12 was 166 ng/L and 161 ng/L in January and June this year. The results say 180 to 1000 is normal. GP just told me in Jan that it was on the low side and to take an over-the-counter supplement, which I have been doing.

The only other thing that jumped out of the mass of figures was a positive result for anti nuclear factor. I had not heard of this, but googling suggests indicative of an autoimmune problem...

I'm going to start a new thread too to see if anyone else can shed some light...

To check for Addison’s you need an am cortisol blood test. If your cortisol is low (well under 300) it will warrant further investigation- you need a test called Atch done in hospital to have a proper diagnosis after that. (Multiple blood tests within a day).

I have Addison’s and my first symptoms were feeling like I was about to pass out all the time - lightheaded, brain fogged, muscle pains. I had a lot of back and kidney area pain - I went to the doctors about that first. The doctors sent me to physio! I was then diagnosed with panic attacks and given diazepam - also wrong... (I made a formal complaint about the Gp). I also lost a stone. This was over a 6 month period.

I begged to be referred back to endocrinolog- I had seen them before because of hypothyroidism and high prolactin levels. The endocrinologist diagnosed me the same week they saw me- I was very unwell and they got me in the very next day to have the ACTH test and then rang me that night with the results and an urgent prescription for steroids!

I would also find a scale and step on it as you may be underweight. Most people think you have to be very low weight for periods to stop but it actually isn't that uncommon with a BMI of below 20.

It may be you need calorie supplements if your stomach issues stop you eating enough or to have a look at your diet and swap food for more calorie dense options.

Your doctor is misinformed about B12. 166 is low and can easily cause symptoms. It needs to be a lot higher.

If you have problems absorbing it then a normal supplement may not help. Try a sublingual B12 supplement to bypass the gut and get it checked again in a month or two.

What were the other results?

What were the thyroid panel results?
Has anyone ever checked your pituitary? I have to say that’s the first thing I thought reading your op.
You need a full GI and gynae workup as well - press for this to exclude rumours.

Thanks everyone, I'm going to go back to the drs in a couple of weeks (first available appointment) and flag up the low B12 and ask whether it's worth them checking my cortisol/pituitary.

I lurch between thinking there's definitely something wrong and thinking this is just normal middle-aged woman stuff and I need to grin and bear it.

My TSH was 0.8, which is I think well within normal range.

At my last visit to the GP she handed me a prescription for an antidepressant, which I hadn't asked for. I said I wasn't sure I wanted to go down that route and she just handed it to me anyway, just in case...

Also have Addisons.

Your symptoms sound very general -could be lots of things?

Addisons tends to present as a crisis initially - so I had lost weight over a 2-3 month period, had dark skin, scars that were very dark etc. I was nauseous and achy in the month leading up to it - but in the week or so before diagnosis my blood pressure was so low that I could barely stand. If it hadn't been for my Mum marching me back to the GP every day I honestly don't think it would have been caught in time.

I was diagnosed by my GP as being anorexic so was referred to a psychiatrist - who took the time to read all the test results and diagnosed Addisons! (Low sodium and high potassium levels in the blood was the thing the GP had missed)

Sounds like you're getting good advice on here - best of luck with sorting this out.

My useless gp handed me diazepam for what he said were panic attacks and sent me away before I demaned to be referred to an endocrinologist who diagnosed Addison’s - so if you feel the antidepressants are not right you need to be forceful and get them to do more tests.

In my case I wasn’t having panic attacks - I was on the verge of having adrenal crisis!

Thank you both. I'm definitely not as ill as it sounds like you were and my sodium/potassium levels were normal in June. Something isn't right though and I'm still angry that the antidepressants were thrusted on me!

Hope you're both feeling better :)