I have secondary adrenal insufficiency, and a few months ago in February due to my low cortisol level my Endo decided to change my Meds from Prednisolone to Hydrocortisone 10mgs waking, then 5mgs 1pm and 5mgs 5pm, however I am still feeling very lethargic . As it's only approx 3 months since the change should I give it more time ?
When I had the change over of meds, the Endo said for me to have an ACTH test in 6 months time, which will be in Aug. which seems a long time ,
I have found that the spacing suggested by the Endo didn’t work for me as I have a fast metabolism so I now divide my daily amount into much smaller doses and spread it out through he day. I take my largest dose between 5 & 6 am, then the next dose at 9am, the next at 12 midday, then at 3pm and the last dose at 6pm. This has worked so much better for me- I still get fatigued, that never seems to leave me, but I still feel better if my cortisol levels remain at a more even level. It’s all very much a trial and error thing with AI because everybody needs a different amount at different times.
Clemmie
Maybe I should try spacing my tablets more over the day, but it just seems that my whole day is dominated by medication, especially with other tablets I take which need spacing, It wasn't too bad over the lock down as I was inside, I suppose if I go out for the day I will have to remember all my meds, and a bottle of water , I also have to carry a cortisone injection, At least I have managed to cut my tablets OK with a sharp small knife, the pill cutter wasn't very good
Thank you for your reply
As do I - I take a total of 7 different medications daily, along with Methotrexate injection once a week and Benepali injection once a week and I, along with everyone who suffers from AI, carry the hydrocortisone emergency injection. But if you want to feel better then you have to do these things, I’m afraid. Yes, it’s a pain taking my hydrocortisone every 3 hours but that’s the way it works best for me so I have to accept it.
Clemmie
Suggest you get FULL Thyroid and vitamin testing done
Low GFR (kidney output) linked to being hypothyroid, mitral valve murmur linked to autoimmune thyroid disease, and adrenal exhaustion linked to being hypothyroid
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
What vitamin supplements are you currently taking
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies or test privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
My last blood test was all OK re Thyroid,, all done before my change over to Hydrocortisone I have been on vitamin D and calcium for over 20 years [ I was on prednisolone for over 20 years which gave me secondary adrenal insufficiency ] and my vitamin D levels are normal , I take ferrous sulphate for slight anaemia , I do have regular blood tests , and a GFR done every 3 months,
I also have heart disease, and a mitral valve leak, and have had 3 coronary heart stents,
I see a Cardiologist every 6 months for my heart disease, in fact I am seeing a cardiologist this Fri, at Papworth due to my recurring breathlessness, so may need more stents ???
I also have stage 3b kidney disease, So my health issues rather complicating .
Thank you for your reply
Please add actual results and ranges
TSH
Ft3
Ft4
Have you had BOTH TPO and TG antibodies tested
Optimal vitamin levels are essential
Vitamin D at least around 80nmol
Folate and ferritin at least half way through range
Serum B12 at least over 500
Low GFR and hypothyroidism
academic.oup.com/jcem/artic...
Mitral valve common with autoimmune thyroid disease
webmd.com/heart/news/199911...
Breathlessness can be low thyroid/low ferritin/low iron
TSH is totally unreliable on prednisalone and hydrocortisone
ncbi.nlm.nih.gov/pmc/articl...
pubmed.ncbi.nlm.nih.gov/114...
Absolutely essential to always test Ft4 and Ft3 (plus Both thyroid antibodies at least once)
Central hypothyroidism is not as rare as originally thought and is often undiagnosed
Like Bowler, I split my HC into smaller doses but more often as I too metabolise very quickly. HC only lasts between 4-6 hours in the body & is at the optimal level around 90mins after taking it, so by taking your HC at 5pm you are going a long time without any cortisol in your body. It suggested that you take your first dose at least 30 mins before you get out of bed too. I needed more than 20 mgs a day to function - one size doesn't fir all as some of the Endo's like to think! I also take a small dose around 3am to "kick start" my body before taking 10mgs at 7am. Depending on the cause of your AI, it might be worth getting other pituitary hormones checked such as growth hormone. The adrenal hormone DHEA may be low as well, so you could ask your Endo to check that, I'm precribed it by my Endo as my levels were low, but not all will prescribe it but you can buy it from Biovea & it does help with fatigue.
Maybe I need to speak to the Endo clinic, before my Aug appointment, I know I have only been on this dose for a few months but I thought I would feel better, but like you say "one size don't fit all," My level of cortisol was 117, I became adrenal insufficient due to long term use of Prednisolone of 20 years, I take 10mgs, half an hour before getting up, around 7.30,
then at lunch time 5mgs around 12.30 to 1 pm,
and my last 5mgs at 5pm
I am most lethargic around 3pm so that's only 2 hours after my lunch tablet, Maybe the Endo will up my dose ? I have also noticed I have some anxiety, and no motivation, I just want to sit . I feel reluctant to buy any over the counter meds, due to my heart disease, Like I said " I really need to speak to someone before my Aug appointment "
Thank you for your reply.
I would get in contact with either your Endo or Endo nurse to see if they can adjust, regardless of how much you take it will still be out of your system in the same time frame. I find I also go low around 3-4 pm, it might be worth taking 2.5mgs off your morning dose & then taking the next dose of 5mgs around 11.30- 12.00, then 5mgs around 3pm & then 2.5mgs around 5.30-6pm. As long as you don't change the dose you've been prescribed it's worth playing around with timings to see what works for you. I've probably asked you before if you are on Facebook to join the UK Addison's & AI info & support group.?
Thank you PaulineS for you reply and support. I will try your dosing as from tomorrow, I am not on face book, I will look into Addison's info and support group,
Just one thing, some nights I am awake till 1am then the following day I feel really washed out, and then that night I sleep right through, I seem to alternate . I know when I was on Prednisolone it messed up my sleep especially when I was on a very high dose,
Sometimes you actually need to small dose of Hydrocortisone just as you go to bed, even though many Endo's say it will keep you awake. There was a study that gave some healthy subjects 100mgs of HC so of course they didn't sleep, that seems to have gone down into the text books, however we take replacement doses as we don't make cortisol & much smaller amounts then they used in the study. It's a case of trial & error, you would have been on a lot higher dose of Pred than HC, so it might be worth taking just 2.5mgs HC as you turn off the light. I find it helps but others don't. As long as you don't go over what you have been prescribed it's worth seeig what works best for you.
Thank you, I'm taking on board all what you say. Like you say as long as i don't take more than I have been prescribed,
Sorry to be a pain asking your advice.
I was given a couple syringes and needles to use if needed with my Hydrocortisone
but are there any fixed needles I can ask for that would be easier, and are some sharper than others, I dread the thought of injecting so anything that makes it easier would be good, I need to get my husband to see what to do if need be. he's 79 and I want something easy for him
I don't have much support from my surgery re adrenal insufficiency , they just say call the Edno clinic,
Thanks
Sadly there isn't an easy injection kit like an Epipen style. So it's a case of a 2-3ml syringe, you need a green needle to draw up the HC & a blue needle to give it to you. There are two forms of Hydrocortisone injection, there's a liquid sodium phosphate one & Solu Cortef which is s powder you have to mix with water, which is prescribed .
Oh that's a shame, an Epipen would be so much better, and quicker, I have the liquid form
Thank you
This is a link on how to give the HC injection. youtube.com/watch?v=NXXB3w1...
many thanks you for that, it was very informative, I will get my husband to look at it, much better than the piece of paper I was given with the instructionsthanks once again., you have been a great help
Does Dr Skinner believes in adrenal insufficiency/fatigue?
Low cortisol/adrenal insufficiency
