Hi,
I am diagnosed with secondary adrenal insufficency (diagnosed in UK via a synachten test which I failed pretty badly)
My endocrinologist is pretty old school and not really interested in returning me to any kind of high intensity training, he says the max dose of HC I can be on is 25mg.
After educating myself I believe this is insanity for someone like me, I’m 6’4" 90kgs with a massive sweat rate whenever I train, 25MG would be the same possible dosage applied to a 60KG sednetary office worker. He keeps saying any higher should not be needed, I can just about survive on 25mg if I go to work and come home and do jack shit, but anything else and I feel like horseshit. I went to see another endo who was no better.
I believe that the phys exercise/sweat rate means that for me 40mg could be considered a physiological dose when training
I have done a full day in hospiatl doing a cortisol day curve, but that was a while ago when I did feel really bad and all I did was lie there waiting for the next blood draw.
Anyone else on here diagnosed / dosages / advice?
thanks all
Hey,
I have had addisons for 10 years. What are you training for? I have a couple Triathlons coming up this summer. Although I am not of medical background I would have to agree with you on your dosage change.
I found this really interesting:
http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&ved=0CDEQFjAA&url=http%3A%2F%2Fwww.nadf.us%2Ftools%2FFOR%2520ATHLETES.pdf&ei=Q7ILUfPrBsjC0QXDnICYCw&usg=AFQjCNElsHjRSQD1cSOEbJIFm3BBqQdiGw&sig2=My-QeA4Drb0E8P41JVGQmQ
Your doctor is cautious for good reason, the effects of to much cortisone are pretty horrible. It needs to be a careful balance. However your addisons shouldn’t be holding you back from your sporting needs. I find it very important that I excise regularly.
Cortisone has a big impact on your aerobic capacity so you should make sure you are getting enough if your pushing yourself hard. After reading the PDF in the link I increased my cortisone before my 2 hour swim club work out, this gave me a big improvement in performance and recovery the next day.
Sweating alot? This could mean you need more fludrocortisone the day of the work out.
As for your endocrinologist I would say vote with your feet. If your unsure see a different one. the advice he is giving you has a huge impact on your daily life so make sure he is the right guy for you.
My endocrinologist is Professor K Chatterjee who works at a hospital in Cambridge. Although I live in London i still travel up to see him as I think he is one of the good ones.** **
It would be very interesting to hear how your getting on.
Is your HC long-acting? Not sure if Plenadren is available now in US. You might have to get it in Europe.
Thanks for the reply and the link - interesting - I have used Dusty’s support group in the past when I was first diagnosed.
I went to see another NHS Endocrinologist - to complicate matters I also have Seminiferous Tubule Failure and as a result have low testosterone. So I am on HCG injections for the low testo though it doesn’t appear to be doing much, Also diagnosed with Chrons disease.
Back to business;
Training for Time Trials (10, 25s and 50s) this year as my knees need a rest from running
As I’m secondary AI I don’t take Fludrocortisone
I basically told the NHS endo that I was not willing to stick to 25mg and just about had a row with him but held my composure and he agreed to up it to 40mg a day with the proviso that I try not to use that much and also try to reduce the dosage, he then wrote a letter to my GP to cover himself saying he had warned me about “pharmacologic” dosages.
The relief of knowing I dont have to struggle on 25mg was immense, whenever I do a heavy session day I am on 40mg that day, other days I tend to be on 35mg, as I said I’m a big active guy and I think thats the minimum for me to function normally - what are you on??
I have 2 leads that I need to follow up and try and speak to - articles I have seen.
- A Specialist Endocrinologist in the UK who has a special interest in exercise and addisons (saw an article in addisons uk newsletter)
- Another article I saw about a gymnast with addisons who competed in the 2012 olympics, who was on prednisolone as it has a longer 1/2 life than HC and allowed him to train better - If I remeber rightly he was 10-15mg Pred/day which is equivalent to 40-60mg HC
From the bottom up:
From what I have heard Pred isn’t as good as Hydro. It is slower releasing which I guess wouldn’t be great as it would take its time to kick in. I don’t know what mornings are like for you but they are a problem for me.
“The Specialist Endocrinologist in the UK who has a special interest in exercise and addisons” I would be very interested in talking to him to! What is his name?
I take 10,10,5 hydro on a normal day not training. Hard swim training I do 10,10,10 which seems to help. I am 74kg at the moment and 5’11. I do understand why you wanted to increase, you could well be right too, just bare in mind that increasing Hydro would make most people feel better… Just ask Lance (cortisone being one of his drugs).
On your next check up I would double check on the need for Fludrocortisone as it has a direct relation between salt retention and sweating which might also make you able to train harder.
As for low testosterone, have you tried DHEA? its a drug that my Endocrinologist put me onto years ago. I think it is supposed to have an effect on testosterone.
Yes - on DHEA off my own bat (micronized version), 50mg /day and it definately seems to help, does your endo prescribe it? - I was told it was not available on prescription in the uk as its unlicensed?
I’ll dig out that name - though we’ve recently moved house so may take some finding.
He didn’t prescribe it just recommended it.
I can’t help but wonder if someone with addisons has ever completed an Iron Man? I’m not suggesting I could, but it would be inspiring if there was someone crazy enough.