Adrenal Insufficiency Support Group

Please help me-Hydrocortizone panic attacks suicidalhave 2 babies

Please help me if you can. I am new to writing here but not Reading. I'll try to explain in brief so you can see the whole picture.

I'm 26, at 21 started getting I'll- weightloss, deep aches, chronic debilitating fatigue, hypoglycemia( actuall since I was young). Lost my job due to this. Told I had pcos, endometreosis. I saw 5 consultants in the Uk and in desperation in sep I flew to France and saw Dr Brun, had an insulin tollerance test and diagnosed with low ACTH and cortisol. Saw a doctor over here and prescribed hydrocortizone. This is a quick overview of the last 5 years that have been so awful and ruined my life with friends, work ect.

However I write here because I'm now sooooo much worse, here's the situation- on nov4th I started 10mg am and 5mg pm, this was until the 14th. During this time I started get anxiety and tight chest feeling really up and down. The doctor increased to 20mg taking 10,5,5. For 2 days I felt good more energy, happy, could concentrate, no hypos, then in a real fog for 2 days. I then went out to my cousins going away party and took an additional 5mg. I had been in a fog all day and anxious before the party. At the party people said I looked high like I was on drugs, I only had 3 drinks. The next day I woke and had the most severe brain fog, anxiety were I couldn't talk. I was so irritable, tearful and couldn't stand any noise. I took 15mg all day. The next day I was still bad, my partner was back to work and I had my 3 year old and 8 month old. I was angry and so fatigued. I got the kids and took to my mums and then drove round crying trying to get away. I was petrified and didn't no wat to do, I started thinking everyone wanted to die and was in such a bad way. I drove to my local mental health hospital in desperation but after speaking to the reception I ran out. I drove to my doctors then just ended up in the reception braking down in pieces. I was so scared and confused. My doctor told me to stop the tablets. I did for 2 days and on day 2, I couldn't walk being so giddy, I couldn't open my eyes or eat out of exhaustion, my gran fed me through a straw, I just cried and felt so low. My mum spoke to consultant who prescribed the hydro and he said I should not stop without tapering and to go back to my normal dose. I started taking 2.5mg3 x day, i was so faigued and had intense back ache. I couldn't be arou d anyone because I would have a panic attack. Now this was 3 weeks ago. Where I am at now- I am still taking the same amount, I have 2 children who I now have my family helpi g me with, I am so anxious and fatigued. I can't tollerate the slightes stress without getting a tight chest. I have brain fog, crying all the time. I'm am so scared and desperate for help. I never got anxiety before the hydro, is it because I'm so up and down due to it's half life. My hypo symptoms have increased 10 fold inbetween meals. Please help me, I was I'll for 5 years but still managed to be a good a mum as possible now I can't do anythi g due to my fatigue and anxiety, I'm so scared I'll never get better.

Just to say incase it changed anything- I had a ogtt which showed at 1 hour I was 10mmol and then 7.8mmol at 2 hour but I had a severly exagerated insulin and c peptide response. Could this be insulin resistance ( I have pcos) would this be effecting anything. When on higher doses of hydro my bloodsugar was rising to 11-13 mmol postprandial.

I'm sorry for the long post I just don't have any hope now.

I have to go back to sleep for another 3-4 hrs. Will get back to you..

Questions though. What is your current5 height and weight and have you gained since starting HC. need this to determine dose size.

Bob

Sorry to hear you are struggling. I am not an expert, but my one thought is maybe try a different steroid like prednisone since you say you are so up and down on the HC? A few people here can't tolerate HC and have to use prednisone.

Second, it sounds like maybe you were taking too much steroid. Maybe. But the anger and kind of mania you describe can happen when you have too much steroid. Too much steroid can make you tired too. Getting the right dose is very important and also difficult at times.

And I think that depression is common with adrenal insufficiency because of the way it affects the brain, so maybe you do need some antidepressants to help counter whatever is going on in your brain chemistry. Although I am not an expert.

I hope you feel better soon.

M

Hi Fatigued, and welcome to our forum. I'm hoping that having the support and learning about the experience of all those on this site will help you as it has helped us.

Now to your case. You're very distraught, that's obvious. It's also not that unusual as your hormones are playing havoc right now and your system's in overdrive. Here is some information for you:

First of all the symptoms you would have when you are running low on cortisol would include: fatigue, weakness, dizziness, blurry vision, foggy thinking, muscle aches particularly in the large muscles like thigh and back (sometimes this backache is centered over where the adrenals are - I've heard this from some of the people on this site), hypoglycemia, breathlessness, cold or heat intolerance. I'm sure there are more, this is the short list.

Symptoms from being overloaded with cortisol: Fatigue, rapid heart, anxiety/irritability, weight gain and bloating...if the overload states goes on for a while you can get into a round moon-face appearance, fatty hump on back, bone loss, etc.

So you can see that the hurdle for all of us is to walk the fine line between what our body needs for replacement and yet not going into an overload type of "Cushings" state. At the same time, our bodies seek and desperately need stasis - wildly swinging from one level to another is not the best position to be in for multiple reasons. So doctors will recommend a level that should be consistent with what "average" people at the specific height and weight require for function. This basic level is good to start out, but if our adrenals were working properly the body would adjust that level on a daily basis to what we needed. For example, when stressed our adrenals put out more cortisol - when there is an infection, for example. That means that most of us here have decided not to go with just a standard daily dose, but to do what is called "updosing" when we feel we need more. In order for this to work, we have to learn to listen closely to our body symptoms. Again, I know this is not easy because of the fact that low-cortisol and high-cortisol states have some symptoms in common - fatigue for instance. But if you are fatigued and feeling hyper - probably high. If you are fatigued and just done in, like you can't walk another step - probably low. I always look for more than just one symptom to really help me decide whether I need to updose, and by how much. This week I had to updose a couple of times - yes stressful time of year...for ex. one day I noted extreme cold intolerance that didn't respond to upping the heat in the room, then started with some tightness/crampiness in thighs and that my vision was somewhat blurry with a lot of dark spots (floaters, which I always seem to notice more when I'm cortisol low)...bingo I knew I needed more prednisone.

So my advice for you, is to try to get yourself stabilized. Yes I know easier said than done. Take it one day at a time. Keep yourself as stressfree as possible. Notice that many of us here live with this illness and enjoy our lives, and know that you will, too. M's advice that you might need antidepressants is good - many on here have found that to be the case, so it is probably worth you consulting a doctor for that.

Post often and ask whatever questions you need to!

Deb

P.S. I'm a little brain foggy myself today but I wanted to tell you that I am one of those who does better on prednisone. It is longer-acting and so it may help you even out those spikes a bit. It sounds like you are already splitting your doses up into three doses, largest in am. This is important because you want to avoid that huge "hit" on your system - again this refers to trying to stabilize and avoid wild up and down surges in the levels.

Deb

You poor thing. It is so hard to feel so confused and emotional and fatigued all at he same time.

Take big note of this: do not drink alcohol with PCOS or with Adrenal insuficiency. Alcohol zaps your cortisol levels.

Alcohol causes hypoglycemia... that is what makes us feel drunk. Cortisol fixes it. If you are already low on cortisol and your dose is not well managed this is a recipe for disaster. Just as you've described.

Talk with you doctor... obviously... but in my opinion I'd get back on that hc quickly.... and then talk about prednisone as an alternative.

Noise sensitivity is a big alarm for low cortisol we've discovered. That and stress being overwhelming... from normally simple things..... confusion too. It's okay. You will be okay.

Ask about some antidepressants to help you through his process of getting the right dose. It will make a huge difference!

Sweetie, I'm the poster child for mental issues here, so know that you are not alone. Like the others said, depression comes along with AI, and I learned that having a good psychiatrist involved is imperative. AI is too rare and complex for a regular doctor to handle (in most circumstances) anti-depressants as well, especially if you are unstable and/or extreme. I was diagnosed with major depressive disorder.

Before my treatment for AI started, I had panic attacks and tons of anxiety. Once my dose was straightened out, they went away, and I have not had one since. There IS HOPE! I am also on prednisone, because I went into crisis on HC. My body just did not recognize it much at all. I think maybe that is what is happening with you. I gradually got "drunker and drunker" acting and feeling over a three week period. It was VERY scary. I finally told my endocrinologist to either put me in the hospital or put me in the mental hospital, I didn't care! (I went to the regular hospital, was treated with prednisone, and recovered fairly quickly with it.)

I recently for the first time stayed at the hospital on the psychiatric floor. I was there for ten days, and it's the best thing I ever did for myself. If you want to know more about it, just ask. I'm more than happy to talk about it.

Hang in there honey. It will get better.

Cynthia

Wow Sabra you just put another piece together for me. I could never handle alcohol! One drink and I was tipsy, two and I was under the table! Finally gave it up altogether when I was 20.

Deb

Cyn, I am so glad you got the care you needed at the hospital. Doesn't matter what department you were with, as long as the care fit the bill. I am hoping 2011 is a great year for you and all of us AIers. I remembered just prior to my surgery to mention to the GP I saw (who worked at the hospital in NYC) about my concern since my AI of March 2010. He took a blood test and it showed I was low within the normal range and I had HC in my IV for 3 full days. Wow, I am so glad I took care of that. Will be seeing my endo rather soon...need blood tests first.

Since I had back surgery my surgeon told me whenever I have dental work in the future, I must go on antibiotics. Ever hear of this? Thank goodness I just had a filling replaced by a crown pre-op!

Not for AI, but I have to stress dose before having dental work. Just a little bit for fillings, but for anything major, like when I had two teeth pulled, I had to double dose for three days before and three days after.

My poor dentist...I have a ton of dental issues, and he's never had an AI patient. The first time I told him about the shot - you should have seen the look on his face! But I think he weighed that versus sending his daughter to college, and I won! LOL He's been great with me, really.