Hydrocortisone - is this normal?

[Jemimabea]

Hi I started taking hydrocortisone, levothyroxine and desmopressin nearly two weeks ago.

All was well then one morning a few days ago after taking the medications I became foggy, confused, dizzy, feels like my body is buzzing, heavy and like I can’t catch my breath, that my heart is beating too quick. Also I am constantly hungry.

I’ve felt like this for two days now and I’m starting to wonder if it’s better to not take them.

I’m guessing they are side effects but will they go away?

Thanks for reading

[Emyloulou]

Why are you taking the hydrocortisone and how much are you taking? If you’ve been diagnosed with adrenal insufficiency you can’t stop taking it or you’ll become very ill. Being dizzy, shaky etc are how I feel if I have low cortisol, usually due to illness of some sort or a shock and unfortunately it can make you feel hungry but that should go eventually so unless you can afford to put weight on you’ll need to try and ignore it. Hope that helps x

[Jemimabea in reply to Emyloulou]

Thanks for your reply.

I had a pituitary tumour and have therefore been diagnosed and treated by a specialist.

I take 2x 10mcg on waking and one at 4pm.

The symptoms sometimes subside a little if I eat but I’d need to constantly eat to stop feeling bad.

I’ve read in here that taking the hydrocortisone in regular, smaller amounts may help so I’m going to try that.

I just didn’t know if this is “normal” If it is I need a better way to manage it as it’s quite debilitating.

Thank you x

[Emyloulou in reply to Jemimabea]

That’s a seems like big dose of hydrocortisone, most people start on 20mg spread through the day and that’s probably why your feeling hungry. Have you had a day curve that shows you need 30mg?

You also need to spread it out more as it only last for approximately 4 hours when it’s replacing cortisol. I take 10mg about 30 minutes before I get out of bed then 2.5mg every 4 hours so at 11,3,7 and bedtime. When I didn’t take the small dose at bedtime I’d wake up shaking x

[Jemimabea in reply to Emyloulou]

I’m afraid I don’t know what a day curve is. I’ve just followed the instructions given by my Endo.

I have started to take smaller more regular doses to see if that helps.

So the shaking, heavy ness and fuzzy brain is when the cortisol dips? That would make sense. Thank you!

My Endo says it’s a black art and isn’t hugely helpful, so I’m very grateful for any advice x

[Emyloulou in reply to Jemimabea]

Definitely splitting your dose up more will help, the largest one first thing in the morning. If I’m an hour late taking one of my doses I start feeling really nauseous and shaky so I don’t know how your managing with such a big gap.

My endo doesn’t care how I split my dose during the day as long as I try not to go over the 20mg but I do sometimes have to take an extra 2.5 if something happens or I do lots of exercise etc. You should also have enough to stress dose if your ill x

[Jemimabea in reply to Emyloulou]

Thank you ever so much!

That all makes total sense and I feel so relieved!

I did have a day curve ( had to google it)

I’ll begin in the morning splitting the doses up so I take it more regularly and hopefully I’ll be able to get out of bed and function tomorrow!

They have given me plenty of extra just in case.

I’d felt so much better taking them so it was a worry I wasn’t suited to them. But you’ve really helped me, thank you! X

[SeasideSusie Remembering]

Jemimabea

Did you start taking them all at once? When starting multiple medications (or supplements) we should start with one, if no adverse reaction after a week or so, add the next one, if no adverse reaction after another week or so then add the next one. That way, if you do have any reaction you will be able to pinpoint what caused it.

Do you take them all together? Levo should be taken on it's own, 2 hours away from any other medication so that it's absorption is not affected.

Have you checked the patient information leaflet for all of them to see what possible side effects they can cause?

[Jemimabea in reply to SeasideSusie]

Thanks for your reply.

I did as I was instructed and started taking them all in one day. I’ve since read about Levo being taken separately and have started to do that. I didn’t know to introduce them separately.

Ive read everything I can but I’m having difficulty concentrating so I just wanted to hear from people with experience if this will subside or if this is my new normal.

All the symptoms I’m experiencing are listed. I just wanted to check if there was any way if managing them or doing things different or if I just have to be patient and wait for my body to adjust.

Thank you!

[greygoose]

Can I ask why you're taking desmopressin? Seems a strange thing to give someone on HC.

[Jemimabea in reply to greygoose]

I have diabetes insipid is due to damage to my pituitary.

[greygoose in reply to Jemimabea]

OK, so does your doctor check your sodium levels frequently? Which he should. The symptoms you describe could possibly come from low sodium levels.

Using desmopressin together with hydrocortisone may increase the risk of hyponatremia, a condition associated with low levels of salt in the blood. Symptoms may include nausea, vomiting, lethargy, weakness, muscle cramps, twitching, confusion, seizures, and even death in severe cases.

drugs.com/drug-interactions...

[Hidden in reply to greygoose]

This is very common for people who have had surgery to remove a pituitary tumour to need to take desmopressin as the pituitary gland stops producing enough AVP so have no regulation on how much the pass urine. Her symptoms are much more consistent with low cortisol rather than low sodium.

[Hidden]

Hi What ever you do, do not stop taking your medication as you will become very unwell! It sounds like you are under an Endo who is not very experienced with pituitary/adrenal issues! Taking hydrocortisone just twice a day will give you periods of high levels of cortisol & then periods of low cortisol. As Emmyloulou has said you need to split your dose into smaller but more frequent doses throughout the day, taking the largest dose first thing in the morning & then lower for the rest of the day, you may find that you don't need to take so much HC & can reduce the dose a bit but don't do this until you have tried with more frequent doses. HC only lasts in the body for between 4-6 hours so you are going long periods without any cortisol in your body which would account for some of your symptoms. I also have adrenal insufficiency due to a pituitary tumour, however I don't need to take Desmopressin. I take around 30 mgs of HC a day as I metabolise very quickly. If you are on facebook then join the Addisons disease UK info & support group where you will get much more help from people on there. I'm assuming that you have just had your surgery which is why you are on a large dose? Was your tumour secreting any excess hormones? Mine caused Cushing's disease, I now run a FB group for people with Cushing's disease to support them during testing, treatment, surgery & following surgery, it's called Cushing's UK. If you are not on FB then look on the Addison's disease website, there is a lot of information on there too. Also look at the Pituitary Foundation website too. pituitary.org.uk

I'm always happy to help as I'm now 4 1/2 years out of surgery in remission so have learned a lot over that time!

[Jemimabea]

Thank you! I was diagnosed and had the tumour in 1985. I took the medications up until about ten years ago but as I live in a rural area I had no access to anyone who knows anything about it. My doctor an specialists seemed to not think it was important and then six months ago I became unwell and struggled to do anything.

I was sent back to the Endo for tests, they confirmed everything and puzzled about how I’d been forgotten, but explained the importance of taking the medication. I started two weeks ago after not taking anything for a long time, so I was expecting changes and to begin with the changes were fantastic! I had lots of energy and then all of a sudden I feel awful!

I feel much better today spreading the doses into smaller more regular quantities. I’m so very thankful for the advice!

I don’t know very much at all about my tumour or the meds they have prescribed as they don’t seem to know!

I’m only just reading about emergency injections and wondering if I should have one just in case. I guess it’s al going to take time to adjust.

Thank you once again for all of your help! I’ll keep reading and researching!

[Hidden in reply to Jemimabea]

Yes you definitely need an emergency injection kit! Contact your Endo asap, he will have to prescribe it in the first place & send the request to your GP. It's important that you have one, especially at this current time when you might need to use it if you get ill. He needs to prescribe several of them so you have more than one. Your GP can't prescribe the syringes & needles but should give them to you from the surgery. Familiarise yourself with the "sick days" rule, you need to double up your steroids when you are on antibiotics, also you will have to increase your steroids if you get ill, look on either the Addison's website or Pituitary foundation website. Having adrenal insufficiency we are the same risk of the rest of the population getting the virus, however if we do get it then we are likely to have a more severe form of it due to needing to increase your steroid dose. As you had a pituitary tumour you should be having an annual MRI scan to make sure that they tumour hasn't regrown.