Hydrocortisone not helping, please help

[Roxanne73]

Last week I was finally prescribed HC by a dr in Belgium and I thought it was the answer to my prayers as my cortisol saliva results are pretty bad and I was feeling really badly ( no thyroid meds yet).

I have taken the hc for 5 days now and the first 2 days were good, but now it's just making me ill. I feel weak, ill and sometimes anxious and shaky. I took 20 mg the first 4 days and today 25 mg hoping it would get better.

Is there any chance this will improve or should I just stop taking them? I'm afraid to continue with them and afraid stopping them...please advice. ( I'll see the dr again in 3 weeks). Can I stop taking them at once?

Thank you

[Hidden]

Hi

I'm not sure but my suggestion would be could you not get an earlier appointment? I'm sorry not much help but wanted you to know I was thinking of you. Love and hugs Lynne xxxx

[Roxanne73 in reply to Hidden]

Thank you

[Hidden]

It takes some time to get the right level of Hydrocortisone. How often are you taking it? HC only lasts in the body for between 4-6 hours so it needs to be spread out throughout the day. You take the largest amount about an hour before you get up for it to stat working, then split the rest through the day. Have you been diagnosed formally with adrenal insufficiency? Taking HC for a long time will stop your adrenal glands working totally so you will then be dependent on steroids. Adrenal Insufficiency is a life threatening condition where you need to carry an emergency injection & have to take extra steroids if you are ill. I have secondary adrenal insufficiency due to removal of a pituitary tumour.

[Roxanne73 in reply to Hidden]

Hi, Pauline, I was diagnosed with low cortisol and doing pretty badly. I even went twice to the ER here in the Netherlands as I couldn't eat and had abdominal cramps but they do nothing. They scheduled me for an Sinacthen test in 6 weeks but I was too desperate to wait and went to this private dr in Belgium.

I am taking 10 mg in the morning, 7.5 g after 4 h and so on, every 4 h until I reach 25 mg.

[McPammy]

Hi. I do feel for you. I’ve had low cortisol readings and collapsed many times. I’ve also got Hashimotos thyroid disease. I also had low B12 and low ferritin results. Have you had your thyroid and vitamins also checked. B12, D, Folate, Ferritin. These are very important too for optimal thyroid and cortisol. Like Pauline said you need to be very careful taking Hydrocortisone as it will eventually make your natural cortisol/adrenals go to sleep and you have to be very careful tapering down the Hydrocortisone if you want your adrenals to wake up again. I’ve have 2 synacthen tests. The first I was border line Addison’s the second I was ok. When you have your synacthen test make sure you have no Hydrocortisone 48 hrs before hand or it will inflate your results falsely.

I’ve avoided Hydrocortisone hoping my adrenals come back. Ive been prescribed liquid thyroxine and very recently with a lot of hardship I’ve got T3 privately. As in UK it’s virtually impossible to get on our NHS due to high costs for it here.

If I was you I’d get your synacthen test done first. I know it’s a wait but you may not have Addison’s or secondary issues. Sometime cortisol is low and your adrenals recover. Since I’ve been on T3 medication I feel a whole lot better. My cortisol was 68 (155-607). I had a terrible time with complete weakness but now I’m on the mend. Most days I couldn’t walk. I lost my brilliant job with Rolls-Royce. Today after being on T3 for 3 weeks I feel alive and fit again.

So what I’m saying is that it may not be adrenals it could be something else effecting them if your cortisol is low. The way I explain it is my thyroid is my energy and my cortisol is my strength. They are closely linked in your Endocrine system.

This is just my own recent experience. I do hope this may help. I’d get a synacthen test privately if you can’t wait. I got my first one done in hospital after I collapsed and was taken to emergency. Maybe you could go to your emergency dept if you are feeling so bad and they can do it there and then instead of waiting 6 weeks. Just a thought.

Can you call your private Drs secretary in Belgium explain your symptoms or email your Dr it’s all biochemistry and often Endocrinologist just go on symptoms and blood results As he’s prescribed the Hydrocortisone he should be able to advise maybe your dose is too high or you’re not spreading the doses out evenly throughout the day I think you need to follow the circadian chart

I know it’s s very difficult time and you must be struggling.

Take care and be kind to yourself. Sleep helps cortisol and rest.

Pam

[Roxanne73 in reply to McPammy]

Thank you Pam for your kind words. I'm sorry you lost your job, but most important is that you are doing better!

Unfortunately I cannot do a Sinacthen test any more as I'm taking the hc right now. I don't know why they didn't do it when I went to the ER. The test doesn't seem reliable anyway and many people get different answers like you did.

I'm feeling a bit better now and hopefully my body will get used to the hc. I think I will have to take it for a long time as I was doing really badly.

Love and hugs to you

[caledoniancat]

You should probably be checked for Addison's disease, if you have this, you will likely need fludrocortisone in addition to hydrocortisone.