Monday, 15 April 2019

April 2019 - How's the new dosing going?

I thought I would do a quick update on my progress on my new dosing of 15-5-5mg of Hydrocortisone as mentioned in my last blog.

Plus, I saw something on my patient record recently - my original Cortisol level at initial diagnosis. The reference range for Cortisol at 9am (this differs slightly depending what you read) is 180-620 nmol/litre. In reality you'd hope your Cortisol level would be towards the higher end of this range at 9am because your body will have kicked in Cortisol production in the early hours getting you ready for the day ahead. I had my first Cortisol blood test back in February 2013, blood taken around 11am. My Cortisol level was 40, it was described on the form that came back from the lab as "very low". I should say so, my GP described the level as "how are you still walking"!! (RIP Dr Newman, he was a brilliant and lovely GP)

(there were 4 levels highlighted by the lab in all, Luteinising Hormone at 0.7 when it should be 3-8, Follicle Stimulating Hormone at 1.6 when it should be 1.4 to 18.1 and Testosterone at 0.4 when it should be 8.4 to 28.7)

Having Adrenal Insufficiency is a condition you do need to constantly manage, taking a set dose of tablets every day isn't always going to work. I'd mentioned in my last blog about feeling fatigue a bit more than I used to and when I spoke to my Endocrine team in December 2018 they suggested increasing my dose from 10-5-5 to 15-5-5 daily, which I have done. Without a shadow of a doubt, it has made a positive difference - I've been on the new dosing for 4 months now. 

I still do a lot of reading about Adrenal Insufficiency as well as participate in various Internet forums and I am always learning. The main issue is trying to sort the wheat from the chaff in terms of advice that is good and not so good. At the end of the day it may come down to personal preference, but it is sometimes difficult to navigate through all the information out there. As an example.....

"I've got a headache" - this is a common thing that anyone in the entire world could experience. Someone like me with a specific medical condition also has to consider "is my headache due to my condition, or is it just a headache". It sounds stupid, but it does happen. Of course any number of things can cause a headache, and upping my fluid intake and a few Paracetamol will sort it out anyway. But it is a flippant example.

More realistically, "I'm feeling tired/fatigued" is what I face. Of course everyone gets tired for lots of different reasons, but the same scenario comes up, why am I fatigued and is it because of my AI. It is annoying. I have to think "is this fatigue reasonable?" What have I been up to, have I been walking for miles, doing heavy gardening, am I mentally under any stress. If I answer "yes" to any of those things, depending what time of day it is, do I need to take a bit extra Hydrocortisone.

Say it is 09:30, I took my 15mg dose at 7am and suddenly I'm fatigued (this is a fictitious example, I don't think it has ever happened). I shouldn't be because my morning dose should be in full swing, am I ill (harbouring a bug that hasn't manifested itself yet) and should I increase my dose? Probably I would for just one day take an extra 5mg to see what happens.

Say it is 11:30, I took my 15mg dose at 7am, but here I am fatigued again. This time I've had a long walk with the dog, it's a bit hot outside. Fair enough, my dose ran out early so a drink and a sit down, early HC dose and everything is fine. No problem with this scenario, this is a real example and it happens a lot less now I'm on 15-5-5.

It is the former scenario that could cause issues though, not the latter because that is fully explainable. In the former scenario, let's say the next day I'm still not obviously ill but still not feeling 100%, what do I do. Do I take extra Hydrocortisone and see where that leads me? I know the buzzing feeling that too much HC gives me, I never feel that which must be a good thing. So the chances are the 10-5-5 dosage wasn't quite enough and the 15-5-5 is just about enough, because it has made my fatigue symptoms better. But what those odd days that don't make sense.....the advice in some quarters is keep on top of your HC dose, "too much won't harm you in the short term". I agree with that, but I'm also cautious of that approach. There has to be a reason for low Cortisol symptoms, so if they persist then the first port of call has to be your doctor of choice, that's how I feel anyway.

A very sensible suggestion I had recently was that if your Hydrocortisone replacement is robust and correct, then you shouldn't have frequent 'crashes' or under replacement issues. So making sure your baseline dosage is correct is very important. Easier said than done of course, I consider my version of AI fairly straight-forward even though it annoys me at times. Other people with similar conditions have a much different and more complex experience.

A bit of a ramble here, but for me the summary is I'm generally feeling a lot better on my new dosage. I was advised I could move to 20-5-5 If I needed to, although perhaps I'd go for 15-10-5mg - indeed on the odd occasion where I know I'm having a hectic emotional/physical day, I have done and it helped. But where is that line you cross between not quite enough HC and too much, a difficult line to tread. I know how I feel about it, but it is a complication I could really do without.

Finally I wanted to share a diagram that I stole from Amy Bojar, I hope she won't mind, but I really like it. It is a good visual aid of what symptoms a person with AI might have and when these are 'just' low Cortisol and when they are more critical and suggesting an Adrenal Crisis. I wanted to share this because I've found it useful and I have now saved it on my phone to refer to, "just in case". I'll admit, I find it hard to read the last few entries at the bottom..... :-(


  1. Hello Carl

    Over the course of this Easter weekend I have read your entire blog. I just wanted to thank you, as I start on my non secreting pituitary macroadenoma, (we think) journey, (I have my MRI next wednesday, but everything is indicating a macroadenoma).

    Many of the things you've mentioned over the years are identical to the symptoms I have been experiencing so it's been amazing and very helpful for me to realise I'm not the only person feeling as low as I do / did.

    I say did, bercause I've been on Hydrocortisone (20mg) and Testosterone (six pumps - I use gel in a pump canister)for a month now and they have turned my life around. I start on Levothyroxine today as well because my Thyroid gland has virtually stopped working too.

    I've heard people say they feel really rough with low Testosterone, I've heard people say they feel really rough having low Cortisol, I've heard people say they feel really rough having low Thyroid hormones. You, and I realise you CAN imagine how I feel having all three.

    Thank you Carl for your blog and I will look forward to the next installment even though I realise your acute phase is behind you now - thankfully.

    Regards Adrian.

    1. Hi Adrian, I'm glad it has helped. Although initially I did the blog for me as it was helpful in coming to terms with what had happened, I did also hope that the blog would be useful to others because there aren't too many Pituitary blogs around. I'm sure I will still update the blog from time to time. All the best on your journey too, I'm on Twitter too if you ever need to get in touch

  2. Carl,
    I like the diagram .. But I too am hypopituitary so all 4 hormones are in the firing line ..currently on 3 hormones awaiting a 3rd test for cortisol... My query is how do you decide which hormone is responsible for the symptoms? Cos the diagram is manly Cortisol..I can only presume you are happy at the levels of the other 3 and have been for some time?

    1. Hmm, its a really good question. At diagnosis my Testosterone was non-existent and Cortisol really low, those two issues remain. I also had low thyroid plus other wonky results but those have resolved once I recovered (according to my blood tests) from the surgery and the treatment kicked in. Things like fatigue can be down to low Cortisol or low Testosterone, mood swings the same. So it can be difficult to attribute which hormone is to blame, assuming it is any of them! My blood results for Testosterone are in range so I tend to blame low Cortisol most of the time because I can at least alter the dosing, not so easy with T because it is a 12 week injection.