Update

Some of you will remember my post re adrenal test, cut a story, I was at the hospital today for the results, seems that my adrenals have now packed up,, and I will be referred to an Edocrinologist I was rather upset at the result but wasn't entirely surprised as I was getting some of the symptoms, I am on 6 mgs and to stay on that till I see the Endo, don't know how long I have to wait to see him/her as the Dr will now write to my GP then I have to be referred by him, what a waste of time, so another wait.

Does anyone know what I could be doing for this or should I just carry on until I get an appointment to see the Endo, I don't want to mess things up as I was thinking of taking iron supplements for the lethargy.

thanks bowler

31 Replies

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  • Just keep taking the tablets - it is now a replacement therapy in the same way thyroxine is used for hypothyroidism. I doubt iron will help - the fatigue and lethargy are due to the low level of corticosteroid in your body: in the form of cortisol it is essential for your body to function properly. You may well feel much better on a slightly higher pred dose - the perception is that the dose that is equivalent to what the body produces is about 7 or 8mg and it is possible that the endocrinologist will say that.

    polkadotcom is the expert here - she has the same problem.

  • Thank you PMRpro

    Perhaps I should up my dose, as I have recently had a really bad chest infection, second one in 2 months, and just finished yet more antibiotics.

    The Gastro Dr. who has ordered all these test, did say if am poorly again I should up my Pred. He has been so good, I have been craving salty peanuts and crisps

  • Which I suspect may be to do with a degree of adrenal insufficiency!

    You are going to have to take pred at some level - you might just as well take a dose that leaves you feeling rather better than you feel at present.

    Most of what you describe could be accounted for by your corticosteroid levels being low - and the craving for salt is an effect of that. Taking a bit more pred is the way to redress the imbalance - taking salt is just glossing over the problem and not addressing the cause.

    Hydrocortisone is a shorter-acting corticosteroid. The effect of pred in the body lasts longer and so we tend to take just one dose a day. Hydrocortisone is effective for a just a few hours - so it is easier to use to replicate the normal pattern of cortisol secretion in the body, a biggish dollop in the morning to get you going and then small amounts during the day to deal with other "stresses" (normal events really). HC is often taken 3 ties a day in adrenal insufficiency.

    Other than replacing the corticosteroid there isn't much you can do - it's like kicking a dead battery, the only thing that will make the item work properly again is replacing it.

    Here is a list of the symptoms you may be experiencing:

    Addison's disease symptoms usually develop slowly, often over several months, and may include:

    Extreme fatigue

    Weight loss and decreased appetite

    Darkening of your skin (hyperpigmentation)

    Low blood pressure, even fainting

    Salt craving

    Low blood sugar (hypoglycemia)

    Nausea, diarrhea or vomiting

    Abdominal pain

    Muscle or joint pains

    Irritability

    Depression

    Body hair loss or sexual dysfunction in women

    Your low BP has been a sign they should be linking with the test result - you also mention the salt craving and depression. Honestly - a bit more pred is probably the answer until you see the specialist.

    Look on the bright side! You no longer have to worry about reducing your pred dose - you NEED it for other reasons!

  • Thank you PMRpro

    I can relate to 8 symptoms on your list. perhaps the aches and pains/headaches , were due to the adrenals and not PM /GCA no wonder I couldn't get completely off Pred. over the years. I was so happy when reaching 6 mgs on the slow method which I have been on for 3 months, and seemed to be doing ok but the adrenal symptoms have been creeping in recently, the fatigue is awful and the recent chest infection really knocked me out, I realise now that I should have upped my dose of pred, at the time, but didn't know then how bad my adrenals were.

  • Yes - the onset of Addisons can be sudden and life-threatening or creep up on you slowly. The sudden version is when the supply of steroid stops from one day to the next and can happen if you just forget your pred dose a few times - like going on holiday, forgetting your pills and thinking it doesn't matter. Or suffering a really severe trauma of any sort, emotional of infectious as well.

    The chronic version happens when the amount of steroid is slightly below what you need and your body doesn't top it up - so probably at 7mg you were fine, but at 6mg it isn't quite enough and over time the leak in the bucket has let the level creep down slowly to where your body is struggling.

    I've said several times in various forums that if you get below 7mg or so and find the fatigue is increasing rather than decreasing you need to be firm with yourself and the GP, mention it and get it looked at!

  • Rheumatology knew I was struggling getting down on my Pred. years ago, they tried me on methotrexate and Azathioprine but never offered an adrenal test, I did mention that I thought my adrenals may be packing up due to long term Pred, and the answer I got was Probably. Oh well what's done is done, and if it wasn't for the gastro Dr, I would just have carried on, so thanks to him.

  • "Probably..."

    So they were aware - but one can only assume they didn't bother to think of the long term consequences. Obviously didn't listen to their physiology lectures and forgot all their endocrinology background on turning into rheumies.

    Huh!!!!

  • Hi bowler,

    Sorry to hear your latest news. I think part of the treatment is Pred anyway, so as PMRpro says you may help yourself if you go back up to 7 or 8mg whilst waiting for further info.

    I think it can also effect your blood pressure, so if you are craving salty things that may be an indication of low pressure - my DIL has that and was told to take sodium replacement tablets. It's dissolved in glass of water every day and to eat crisps! Think you can buy tablets in chemists/ supermarkets. Might be worth looking into.

  • Hi. DL

    My blood pressure [ Diastolic ] was quite low and I was taken of one of my blood pressure pills, I was also dizzy when I stood up, that's all OK now however the blood pressure is a little higher than I would like especially as I have stage 3 kidney disease. I had a blood test a couple of days before my hospital appt. all was ok with that apart from ESR 21 and CRP of 11, but those numbers have been like that for ages so i wonder if they are normal for me

    Thank you for your info on the salt tablets,

  • Hi,

    Hope you're feeling a little better having upped your dose. My ESR was never very low, except when first started on v.high doses of Pred, usually in the mid to high teens. Over the last few months, both on low and zero doses it runs around the low 20s. GP not particularly bothered - taking into account age -69 and fact I have rampant arthritis!

    Take care, hope you soon get some definitive answers.

    As others have said, if you are on a set dose of Pred, at least you don't have the worry of anyone nagging you to reduce! Plus it will improve your mental state.

    We all have this love/hate relationship with Pred, but the truth is - for lots of people it really does give us our life back.

  • I'm very jealous Dorsetlady. I'm just (?) 69 too and my ESR is mid 70's. I understand there is a calculation of finding what a 'normal' ESR level is using age etc must find out and report back. However, no two people are the same, regardless of age. I'm reading from you wise people that one has to be patient and listen to your doctor but listen to your body, carefully too.

  • It's been disregarded - if the ESR is higher than about 20 it suggests there is an inflammatory process going on and investigation is needed, it isn't an inevitable part of ageing.

    However, for men it was age divided by 2 and for women it was age plus ten and the total divided by two, So at 70-ish that would be up to 40 was OK. On any count - yours is still high!

  • bowler, not what you wanted to hear, I'm sure, especially after the many years you have been battling through this contrary condition. If it were me, I think I would be inclined to try an increase to 7.5mg, for the same reason suggested by PMRpro to see if the lethargy improves - the latter probably not helped by the recent chest infections either.

    When I was feeling rubbish at one stage during last year, and, like you, also craving crisps (not usually part of my diet), blood tests revealed reduced sodium levels, possibly caused by a certain blood pressure pill I was on at the time. So, if you haven't had your sodium levels checked recently, perhaps doing so might provide the answer to the craving.

  • Thank you Celtic

    Hi Celtic

    No I didn't want to hear the news but somehow in the back of my mind I was expecting it, I am also feeling very low mentally. I don't know if that goes with adrenal failure,? I will certainly look into sodium levels,

  • Hello again

    Forgot to say that I have upped my dose to 7,5 this morning.

  • Hello again, bowler - yes, the Hydrocortisone that Mrs Nails has mentioned is a form of steroid. At a vasculitis symposium I attended a couple of years ago, a rheumatology professor recommended switching to hydrocortisone in cases of adrenal insufficiency at 5mg Pred and below. Although that might be an option for you in the future, as you hadn't quite reached that 'magic' dose when the adrenal insufficiency was diagnosed then it seems the best path for you to take at the moment is the increase in the Pred.....and that does seem to be the Gastro Doc's advice too. Hope you soon feel some relief from the 7.5mg, and hope your Endo appointment comes through soon - perhaps your GP can chase it?

  • Hi Celtic

    I have just read the print out of my last blood test 24/1/17 which I took to the hospital yesterday.....serum sodium level 4.4 [ range 3.5~5.3 ] so in range.

    I haven't felt so tired today, and I didn't have a nap , so upping the steroids have really helped.

    bowler

  • Oh that's good to hear, bowler, especially when it's only a small increase in dose as well. But it's around the equivalent dose of natural steroid that our bodies make when well, so it sort of answers the question doesn't it. I hope you continue feeling better now.

  • Hello bowler

    My Mum was on high does of steroids for years, inhaled & oral for asthma. After successfully stopping the oral steroids she suddenly collapsed following a trauma to her leg & was admitted to hospital, she was seen by several Consultants, eventually they realised what the problem might be & she was put on Hydrocortisone 3 times per day, we're going back 20 years now.

    But once she started her Hydrocortisone therapy she was like her old self again & did really well.

    She was also craving salt in the run up to the collapse & was very dizzy, so it's good you are still on the Prednisolone.

    Hope it all goes well for you & you get to see an Endocrinologist soon.

    Mrs N 💅🏼

  • Hello MrsNails It was encouraging to know that your mum did well on her treatment, I assume the Hydrocortisone is another form of steroid. ?

    I hope I don't have to wait too long before I see the Endo.

    bowler

  • Hi Bowler

    Yes, it's another form of steroids, they classed what happened to my Mum as an Addisons Crisis & Hydrocortisone Tablets were the prescribed treatment.

    Initially they gave her an injection of a fairly high dose & it was amazing watching the transformation from a very sick & weak lady to someone practically jumping around the ward!

    I hope you don't have to wait too long

    Best Wishes

    Mrs N

    PS It was a Chest Physician who joined up the dots & worked out what was wrong with her, then the Endo Boys took her over.

    I've just read PMRpro's excellent reply, l meant to say my Mum had her Hydrocortisone dose 3 times a day as PMRPro says it's a sorter acting Steroid.

  • Yes, it's a nuisance, but in the long term no more than that. I do take thyroxine too, so they are my early morning meds and that is really that. Perhaps I'm lucky, but my consultant is also my rheumatologist, so no referral needed.

    Just carry on as you are I would think would be the right way to go so that the Endo sees you are you are now. As PMRPro says, I wouldn't take anything extra at the moment as it might muddy the waters.

    I do have the permission of my Rheumy to take more than the 6mg I am currently on if circumstances call for it.

    The one thing a would say you need is some form of medical ID - bracelet, watch, whatever suits you, to tell the world that you are steroid dependent and in an emergency not to be messed with. I have a bracelet from a reputable company/charity and I have worn one for years.

  • FYI John F. Kennedy had Addisions Disease and he got to be President. (For a while anyway).

  • Nap1 - yes you are right. My memory of seeing JFK's life history suggested he struggled with serious health issues, Addisons being just one of them - he battled on with tenacity ~

  • Hi Bowler,

    A serious side effect of taking pred is that it increases the loss of potassium in the urine. In my case, I experienced muscle fatigue, (mostly in the legs), overall fatigue, rapid heartbeat, and palpitations from a potassium deficiency. I now carry a card and record my potassium intake from foods each day. If I meet my goal of at least 4000 mg, I can avoid the aforementioned symptoms.

    While it is impossible to know if this is contributing to your fatigue, it might be worth a blood test to check it out.

    When I experience symptoms, I drink 12 ounces of “low sodium” V8 vegetable juice (1200 mg of potassium), or one tablespoon of Plantation brand Organic Black Strap Molasses in 8 ounces of milk, (1000 mg of potassium) and within 1-2 hours my symptoms improve.

    Over the past week, I was waking up with significant fatigue that lasted until midday. For the last three nights, I have been taking V8 before bed and have not been experiencing fatigue in the AM.

    Please note: Original V8 has nearly 1000 mg of sodium and must be avoided, and if you have blood sugar issues, the molasses contains 10 grams of sugars. Lastly too much potassium can be as bad as not enough so care must be taken when supplementing.

    I hope this helps.

  • Thank you Admiral6

    I checked my potassium from my last blood test [ 24/1/ 17 ] it was 4.4 so in range, as was my sodium levels, I did have a very high potassium several years ago and had to go to hospital but that was due to a blood pressure tablet I was taking so once off that it went back to normal, it's such a balancing act with our meds, I also have to be careful with too much salt as I have hypertension, and stage 3 kidney disease, I cant win, When I was on a high dose of Pred, I also had bad palpitations. I assume my fatigue is due to my failed adrenal glands from long term use of Pred [ 17 years ] I will be glad to see an Endocrinologist to get things sorted.

  • There is no point doinig a synacthen test until you are at 5 mgs of preds or less, so said the endocrinologist when I was sent along by a rheumatologist after my first test. Until that point your adrenal glands will naturally stop working as the steroids are giving you approx three times as much cortisol as you need. When you get to 5 or less pred then ask for a referral. I am now at 3 mgs and had my second test last week and am awaiting results.

  • Hi.

    My first adrenal test 6 months ago I was taking 10mgs and was told then they were insufficient, and to have another test at 6mgs which I have recently had and the results came back saying my Adrenals have packed up and I am being referred to an Endo, I thought the adrenals make around 7/8 mgs of adrenaline a day,

    I am having all the symptoms of Adrenal failure and I don't think I could function on 5mgs, anyway I will see what the Endo says WHEN I get an appointment. Like Rheumatologist they probably all differ in their treatment.

  • As I said earlier, the test doesn't show whether your adrenal glands are producing cortisol, it shows whether they are CAPABLE of doing so, a very different thing. If you kick them hard in the acute absence of pred in the body they should produce some. You don't take pred for 24 hours prior to having the test and the amount they will produce is lower than if the test were done on someone healthy who is not on pred - that is why you need an expert endocrinologist who understands how to interpret it on someone still on a higher dose of pred. There are many who don't know about it and will tell patients they must stop their pred for several days - a very risky concept.

    There is also the bioavailability of pred to be borne in mind, which varies between 50 and 90%. You may be on 10mg but only absorbing 50% of it - the equivalent of 5mg, already less than the "physiological dose". If you waited to do the test until the patient was on 5mg, they would effectively be getting 2.5mg - seriously depleted.

    The basic sign for the test is when fatigue is increasing rather than improving as the patient gets below 10mg. Down to 10mg most people are OK but they can still identify that there is a problem and you need keeping an eye on. As has happened to bowler.

  • Thanks for your very clear explanation PMRpro, there seems to be a lot of mis-understanding and crossed wires over this important topic (including by some GPs and Rheumatologists too?)!

  • Here here, what would we do without PMRpro. ?

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