Adrenal Insufficiency Support Group

Have just joined this forum after reading several posts and I can see that I am really going to need the help of others with this condition as I don't have a Doctor that has any experience where I am living.

I have just been diagnosed a month ago with panhypopituitarism & central hypocortisolism. I was already diagnosed with hypothryodism a few years ago. They kept mentioning the low tsh and how it must be coming from the pituitry gland but never once mentioned that it should be looked into...

I was so ill that by the time I flew a short distance to get the ACTH test I really thought I would just not make it. I was so ill getting through the airport and on the way home I looked so ill at check-in they just called for a wheelchair straight away. It was actually a relief because I just was too exhausted to walk the miles through the airport.

Now I am in a situation where there is not a decent endocrinologist in Country that has any experience. The one that I had seen here had just looked at me and said because I was not thin with low blood pressure I couldn't possibly have hypocortisolism and did not want to test.

I have a list of what to do as far as stress dosing and carry the hydrocortisone injections etc but have already had three visits to the ER. They give me the injection but no saline, even when they struggle with getting the canula in because of the dehydration. I have an upset stomach everyday, I am very dehydrated and just can't fix it, I wake up with my mouth so dry that my tongue feels like its stuck to the roof of my mouth. I have nausea a lot of the time and my blood pressure is high. My weight is going up daily. And of course the worst thing is the tiredness. I wake up exhausted and have dark circles everyday and just look ill all the time. The only Dr I have is a specialist in Internal Medicine but he thinks that I should not have the emergency injection when I get ill because it makes my blood presure high!!

Sorry this is so long but it's just so hard to get round this emotionally and mentally.

What I really need to know is:

If I feel really ill and exhausted/dehydrated/nausea/stressed/shaking etc does that mean I need the extra injection or is that just something that you have to live with everyday?

I am on 35 mg of hydrocortisone - 20, 10 & 5. 150mg of thyroxine.

Debs

Generally speaking if the AI problem is "simple" you will certainly feel some fatigue/tiredness etc cycles but will feel reasonable. Injections really are only needed for major illness or trauma. Constant nausea/shakes etc indicate some other problem of HC dosage mismatch. 35mg of HC might however a lot as that equates to around a 100-120kg person. That may of course be a "repair level" dose since you were only DX'd a month ago.

Its also worth noting that your older DX of hypothyroidism and replacement T4 may actually be the culprit. When you fix the adrenal side up you have to review thyroid as that system tends to get overpowered by the now correct level of cortisol. In simple terms hypocortisolism can cause hypothyroidism and your Thyroxine may need to be reduced or even stopped. The symptoms you have described match this state.

Please tell me your height and weight and I'll follow up with more info.

Bob

I am 1.7m and am now up to 131 KG.

I feel tired as soon as I wake up and it just gets worse as the day goes on. Sometimes I just have to go back to bed in the afternoon but then I can't get back up again and just sleep til the next morning. I have an upset stomach everyday and feel sick on and off at different times. I also get a lot of leg cramps, headaches and sometimes migraines.

One of the visits to ER was when my business was broken into - a day of police everywhere just was too much but I think I am more worried about what will happen if you need the injection and don't act fast enough. Sometimes I feel so ill I can't help but think maybe its because I need more and it comes with a really strange feeling like your body is just shutting down on you - if that makes sense. (None of this even makes sense to me)!!

It's also now above 40C here everyday and climbing so the heat when you get out of your car to just get inside somewhere quickly is exhausting as well.

Thanks

Debs

Kind of long...

I finally get to meet someone on here that is the same weight as me. Time to compare notes!

My first gut feel now is that rather than thinking you might be on too much HC, you may not be on enough. I am 135kg at 193cm. That puts our BMI's roughly close. Since I found a reference that says BMI 30 and up carries at least an extra 50% dosing due to body stress I now factor that into dosing.

I take roughly 60mg of HC equivalence per day. Its actually 250ug of Dexamethasone plus 48-54mg of HC. (I also take 50ug thyroxine and 5mg testosterone daily) I am not suggesting you jump your dose up though. There is more to check through first. Oh my BP is about 135/95. Thats fine says my cardio. I have to pump it a long way up hill! My endo is happy with 60mg. His answer was, "well you are a big guy!"

I am reasonably active. I don't drive a car, I walk between 2 and 8km per day and also ride a bicycle. I mention this because higher physical activity needs more cortisol. My personal research on this roughly indicates 10% difference between a sedentary day vs an active one. This of course only applies to my body system. I expect that others will be different along with the definition of "active".

Low cortisol based in a secondary condition can also carry the "risk" of adrenaline panic reactions. ie the central nervous system and hypothalamus get together to react to low energy/blood sugar. Something to keep in mind with the shaking etc symptoms. The most obvious effect are heart palps of course. You can of course also get them from high HC doses and the solucortef shot.

Its about 1C here right now (3AM) and mornings are below freezing!

There is also a hypopit group on MDJ. Might be worth posting there as well.

Being dehydrated and high BP are contras. Generally speaking an AI state trends (in your case maybe by underdosing) to low BP from water volume loss. This makes it difficult for me to judge which thinking direction to go. How "high" does your BP get?

I am sure you are aware that eating salt (ie dietary) will allow you to retain water and raise BP. You can however "feel dehydrated" from HC dosing. I measure my hydration state by my heart rate and in more extreme cases by the onset of leg cramps. The heart rate method is based on a known exercise level. ie if it is higher than usual walking to the shops I know I am dehydrated. If it is lower I know I am overhydrated. I had to develop "the numbers" for me for this method so passing the data on wont be meaningful.

I think it safe to say that hypopit needs far more precise management. Many of the "rules" for a simple AI case will get confused in the light of other systems. I'd suggest that your case hasnt been dose tuned well enough yet.

I'd suggest some more testing if you havent already. If your fatigue/shaky state existed prior to your HC use then it is less likely to be the thyroid/adrenal interaction I mentioned. You should ignore TSH and go for T4 and T3 testing instead. (Since your pit is suspect) You should also look at insulin to see if it is getting too high. That can have the effect of converting "too much" blood sugar to starches. ie weight gain and tiredness at the same time.

The idea is to look at blood sugar and BP in tandem and adjust dosage to get them into a good range. Its difficult for me to be specific sorry, too many interdependencies. It is however something a good systems thinking endo should be able to figure, which is of course your biggest issue!

If it were me experiencing your symptoms and was unable to get useful professional help or testing I would "try" increasing HC and decreasing thyroxine in small amounts. I'd also watch my BP and control that with salt etc. I would have to do things slowly because thyroid hormone changes can take 4-6 weeks to stabilise. The weight gain side I would handle by precise KJ intake. I should point out though that I dont have information about your state to even start that experiment.

Bob

Thanks You so much for your reply. I have printed it so I can read it carefully.

My blood pressure is getting up to 160/100 but now I am on 160 mg of diovan instead of 80 mg to see if that helps.

I am sure it is a lot to do with stress as I am self-employed and am getting so tired trying to keep everything going.

I don't walk ever here as it is too hot. I do have a multi-gym and a stepper but only managed 2 minutes on it the other day and just couldn't do it - pitiful.

The weight has been going up badly the last two years, I think the pituitry has been failing for years but the last two I knew something was really wrong.

The endo in Country ( I just can't bring myself to see him ever again). Refused to test me because he said I should be thin with low blood pressure to have a pit problem. Everything is so cut and dried for them - if you don't match up to what their book says!!!

I am going to fly back over to Dubai this week to see the specialist endo who diagnosed me to go throiugh a whole list of things.

Before I was diagnosed I have had years and years of being so tired and when I got dx with thyroid a few back I thought that was the explanation but just the beginning instead.

I have had frozen shoulders in both shoulders - from start to finish a total of 5 1/2 years of pain, loss of movement etc. That only cleared up a few months ago but am always ill with something. Never feel well and by the time I went for the acth test I thought I would just collapse at Dubai airport as I walked miles and miles and then stood in a long immigration queue feeling so ill.

I get so hot and then you start sweating from the head downwards and then when I sit in front of the ac until I cool down I am left with an exhausted drained feeling like I've climbed a mountain. I've noticed this happens more when I am somewhere with lots of people - like I just can't cope with lots going on..

My insulin tests were all ok. Have never had a problem with blood sugar.

I can't remember feeling shaky before the HC but am just as tired as before I was on it. Also, after emergency shot I didn't shake at all. In fact I expected I would feel great after a shot but I didn't really feel much difference, just a little bit more able to cope but they throw you out of the ER without even any saline so I just felt really dehydrated.

Sorry to go on...this really plays havoc on the brain.

Thanks, Bob.

So, you are somewhere freezing and I am somewhere red hot - both equally a massive challenge..

Have just had cotiscone increased to 55 mg a day now because of my weight - hopefully will ore chance of controlling the tiredness now.

Also will be starting on GH soon. Hopefully that will make a big difference and help the weight to come off.

Debs

Excuse my jump-in, but you have helped Debs so much I wanted to ask.

I am 6foot, 170 lbs taking HC now at 10,5,5 for 20mg/day - do you have a BMI/HC chart?

BTW, I feel better increasing my morning dose from 7.5 to 10, and after I settled into HC I could not tolerate T4/T3 alltogether - as you discuss above.

Thanks for any input.

BMI wise is not particularly remarkable. ie pretty close to mid range so no real adjustment for HC dosing needed. (You are 23.1, Underweight = <18.5 Normal weight = 18.5–24.9 Overweight = 25–29.9 Obesity = BMI of 30 or greater)

The above came from the USDHHS/NIH site

170lb is about 77kg. The University of Sheffield paper I work from states the HC dose as 17.5mg total as 10/5/2.5. I have always found it to be a little low sided though. I get the impression more for a sedentary lifestyle. You really have to tune on symptoms and fitness though and it seems reasonably critical for QOL as well. I use 48mg/day for inactive days and 54mg/day for "more active". If I stick to 48mg on active days it takes about 3 days for me to get into a major fatigue state. Conversely if I do the opposite it takes about 3 days for me to see OD symptoms! My dosing is of course more dynamic than that as "how active" I am is never a fixed amount.

The University of Sheffield paper is in my webspace, named "Weight adjusted HC replacement in AI Clin Endo 2004"

Bob

Just want to mention that before and shortly after I was first diagnosed I had high blood pressure. I was not optimally replacing the cortisol with my prednisone, I was taking too little. Too little for me at least raised my bp. I think it was just because of the extra stress all of my body systems were under. Now that I'm sufficiently dose, I have perfect bp, runs 117/80 most of the time.

It's a balancing act to find out what your own optimal dose is. You have to become very attuned to what your body is telling you, what symptoms you experience when you are running low. And they change as your body changes (weight loss or gain for ex.) or as your health changes. An infection, for ex, will cause you to need a lot more. I recently had sciatica and did not get better until I started upping my dose every day, so even something like that will cause you to need more. Lastly, I lost 60 lbs over the last couple of years (plus I had started on synthroid) and my symptoms of being low have changed. It used to be the classic, fatigue coupled with either some cramping, stomach problem, cold intolerance, or blurry vision. Now, it's a milder kind of symptom but if I don't pay attention - fatigue for ex. - I get heart palpitations. Feels like my heart is beating slower but harder if that makes sense to you. I don't get the blurry vision and cold intolerance anymore. So this vigilance to your body has to be every day, for the rest of your life. But you get used to it.

Deb