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clemmie

Feeling Helpless

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clemmie
Posted (edited)

I am stuck in Saudi Arabia at the moment due to suspension of flights since mid-March. Hoping to get on a repatriation flight at the end of this month finally. I’ve been unwell since Sunday and was this morning swabbed for Covid 19 even though my symptoms aren’t “typical”. Yesterday I increased my hydrocortisone to around 80mg a day in line with the guidelines for treating AI along with the virus and, although I didn’t feel right, I still felt better than I had on Monday. I saw the British GP yesterday on the compound where I am staying and whilst he is very nice and obviously caring, he isn’t knowledgeable when it comes to AI ( I know, not many GP’s are) but he spoke to an endo here who said that was too much and I should only double dose, even though I gave him the ADSHG updated guidelines and also a copy of the study done by Prof Arllt (I think). So, against my better judgement, I reduced down to double dose today and have gradually gone downhill over the course of the day. This evening, I feel so poorly, spaced out, tearful and have a sense of doom, feeling that I’m going to die here before I can get home. So my husband said I should do my emergency injection Which I did and although I still don’t feel a hundred percent, certainly feel better than I did. I spoke to the GP shortly before I did the injection (he called me to see how I was) but, even though I said I felt that this was a low cortisol issue, he really didn’t want me to increase any more than double dose. So I haven’t told him I’ve done my injection and don’t really know what to do. I’m not sure I’ve got enough hydrocortisone to continue at quadruple dose until I can get home - don’t even know when I’m going to get home, really, and the compound medical centre have already tried to get me more but have failed and said that I will need to go to hospital to get it prescribed but I know that the hospitals are “dire” (the doctor’s own words!) at the moment with Covid cases and I was hoping to avoid all those sick people. I’m sorry, I know there’s really no advice you can give me, but I just feel so low at the moment. Thanks for reading this even if you can’t help.

Clemmie
 

*Update*

The doctor has just called me and said he’s read the info I gave him and recognises the urgency in treating promptly and that I should go back to quadruple dosing. 

Edited by clemmie
Update

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suep1954
Posted (edited)

Hi Clemmie

 

I was very recently admitted to hospital for three days because of crisis. They immediately tested me for coronavirus and started me on 80mg hydrocortisone daily, ie 4 x 20mg (6hrly) in case I tested positive. 

I stayed on 80mg for 48 hrs, until the results (negative) were received. 

 

That is standard practice here in the UK, lovely A&E doc explained and emphasised several times! 

 

If I were in your shoes I would definitely continue on 80mg. Its good that the local GP has now recognised the importance of that updosing regime until your coronavirus test results received. 

 

I'm sorry you are feeling so downhearted. I imagine it's the result of stress, missing the UK, not having the confident help you need locally  and, most importantly, undermedication. You will probably find you struggle to sleep at night on 20mg 6 hrly but it will keep you safe if you are unlucky enough to have contracted coronavirus. Several of our members have now had the virus and come through it fine.

 

Dont forget to get your prescription renewed so that you have plenty of tablets to be going on with. And have you got plenty of injection ampoules.?

 

One step at a time. Keep talking to us Clemmie. You are a long way away.... but not alone. 

 

Sue

 

Edited by suep1954
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annelben

Hi Clemmie

I'm glad you're now cleared to updose as advised. I hope your Covid test is negative and you'll be home soon. 

Anne 

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clemmie

I had a bad night, woke at 2.45 with severe nausea, retching, abdominal pain, loin pain then diarrhoea. I took 20mg hydrocortisone and settled a little but the dizzyness was so bad I couldn’t even sit on the toilet. I woke again at 6 with all the symptoms again so took another 20mg and also ondansetron for the nausea. The dizzyness and spaced out feeling and pain continues now at 8.30 am. I’m eating salt because I’m craving it (I don’t take Fludrocortisone but have always had salt cravings since before diagnosis). I really don’t know what else I can do to help feel better. I don’t think this is Covid, I think it’s an adrenal issue, maybe I’m not absorbing properly because I did feel much better after I injected. Any advice?

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suep1954
Posted (edited)

Hi Clemmie

 

 

Two possibilities.... 

 

1. You have picked up a diarrhoea bug. These are notoriously hard on the body if you have adrenal insufficiency because they cause the 'wash out' of your fluids and salts, particularly sodium. 

 

2. It's the other way round. Your sodium is very low and you need fludrocortisone. Low sodium means your body cannot hang on to fluid and it shoots straight through as diarrhoea.

 

In either case, low sodium causes awful, reeling nausea,  which eventually becomes vomitting, and low BP. If untreated it leads to unconsciousness... and worse. 

 

The best thing you can do now, immediately, is use your injection....not only is that a sledgehammer dose of the cortisol your body needs but will also gives you the mineralcorticoid equivalent of 250mcg fludrocortisone, which you are craving. 

 

Then you really need MEDICAL HELP. You need an urgent  blood test for sodium. Even some secondaries need fludrocortisone. 

 

Use further injections if necessary (in hospital they would probably do this via continuous IV) or high oral dose. 

 

Sue

 

PS. Coronavirus does cause diarrhoea for some people so I'm afraid you can't rule it out just yet. 

 

Edited by suep1954
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clemmie

Thanks Sue. Just waiting to hear from the doctor and I will ask him to do bloods. I can’t keep on like this, I’ve been unwell since Sunday and it’s getting worse. The only upside is I’ve lost half a stone since Monday - most of what I’ve put on since we’ve been in lockdown.

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suep1954

Great Clemmie

 

It could of course be a reaction to an infection you are cooking up..... but getting sodium tested us the best place to start. Hopefully your GP will also test for infection markers. 

 

Let us know how you get on. 

 

Sue

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clemmie

I’ve had blood tests this morning ( although had to ask and give my reasons before they agreed) but they were done so hopefully that will give me a clue as to what’s going on. The doctor says he believes that I have an infection or a virus. Feeling better but not right but I’m taking 20mg every 2 hours whilst I’m awake. I tried 20 every 3 hours yesterday but that’s when I went downhill quite dramatically so I figure I need this at the moment. Hopefully I won’t need this high dose for too long. Thanks for your advice and encouragement.

 

Clemmie

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suep1954

Hi Clemmie

 

Hopefully the tests will show what's going on. Short term high dose does no harm. The important thing is to avoid crisis at all costs . Do keep let us know how you get on over  the next few days, till you feel better. Hang on in there. 

 

Sue

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clemmie

I spoke to an Endo late this afternoon and he said because my blood pressure hasn’t dropped low (although this wasn’t taken at the time that I’ve been feeling particularly unwell or in the night when I was close to crisis) that he didn’t think I needed to increase my hydrocortisone as much as I have been doing - is this correct? Im feeling a lot better on the higher dose although I’m getting more diarrhoea again this evening. I suffer from high blood pressure and have done for years before I was diagnosed AI and suspect that it was only ever really low shortly before diagnosis as that’s when I was really suffering as every time I stood up or walked upstairs I felt like I was going to black out. I’m terrified of having another episode as I did last night but he says he will call me again on Saturday to see how I am so I’ve got to at least try reducing. 
 

Clemmie

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suep1954

Hi Clemmie

 

20mg 2 hrly is very high yes. Until you get the coronavirus test result the advice is 20mg every 6hrs. That's on a 24hr basis so you would need to set your alarm so that you don't go past 6hrs. 

 

I was in hospital recently because of serious crisis, unconscious for a while..... injected at home and then the 20 x 6hrly in hospital was enough for me. 

 

However, for something like a raging UTI or chest infection they would probably put you on IV hydrocortisone for 24hrs , so that would mean 200-400mg. 

 

Sorry, it really is a case by case judgement. Only you know how bad you are. If your chronic, reeling nausea has gone or is much bettrr then I would say drop to 20mg x 6hrly.

 

It would be a good idea to draw up an injection to keep in the fridge so that it's ready should symptoms become scary again. An injection will last 80days in the fridge. 

 

Alternatively if you want it by your bedside, it will last 3 days at room temperature. 

 

Sue

 

 

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clemmie

Hi Sue, 

I know it was a high dose but I’m a fast metaboliser at the best of times so I spilt my usual daily dose of 27.5mg and take it every 3 hours as I find that waiting until even 4 hours I get symptoms of low cortisol such as slurred speech, dizzyness, nausea and generally becoming incoherent. So actually if it is Covid the recommendation of quadruple dose would be 110 mg a day so not much lower than what I’ve been taking. I’m still dizzy all the time, nausea, abdominal pain and losing weight like I did pre diagnosis - I’ve lost 4kg since Monday. But my reason for questioning the endo regarding his reasoning that my blood pressure hasn’t dropped so I must be ok cortisol wise is that I believe I’m one of those people whose B/P doesn’t drop until I’m actually going into crisis. But I’ve reduced my dose again so will see what happens today although not looking forward to it. 

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suep1954

OK Clemmie

 

Fast metabolism is a complication I haven't encountered thank goodness but the 110mg instead of 80mg for Covid dosing sound good in your circumstances. 

 

What a good job we are au fait with our condition.... eh? 

 

The continuing pain and nausea sounds more like a bug or infection.  Low BP usually accompanies 

very low sodium but again I have no experience of how high BP would affect that. 

 

Hopefully you will get test results soon and at least eliminate the obvious. If all OK, maybe get a stool sample done next to see if you have a bacterial gut infection? 

 

Sue

 

 

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marlo

Hi Clemmie

The stress of dealing with your condition in the current uncertain climate and not knowing when you can return are also likely to be having an impact on your need for  hydrocortisone. I know what finding yourself locked down away from home feels like. It was so good to be able to still have the forum available on the other side of the world.

I have secondary AI due to Pituitary reasons. I can empathise with you trying to cope with the fast metabolising of hydrocortisone. I try to get by on 22.5 daily and I am one on those few secondary people who take fludrocortisone (this is another story and it may be that I should have been taking more hydrocortisone instead but endocrinologist advised GP that I should be treated as he would any patient with my symptoms).

 

Anyway, back to the hydrocortisone.... I take it four hourly; 10mg at 7.00a.m, 5mg at 11.00a.m., 5mg at 3.00p.m. and 2.5mg at 7.00p.m.

I never go over the four hours because I begin to feel the need before the four hours is up. With this in mind I sought advice about Covid dosing. The regime for me to start with would be:

7.00a.m 20mg,  11.00a.m. 20mg,   3.00p.m. 20mg,  7.00p.m. 10mg,  11.00p.m. 10mg,  3.00a.m. 10mg

I think I would tweak down slowly starting with the 3.00a.m. dose then the 11.00p.m., 7.00p.m., etc. 

If the symptoms worsened I would go back and reduce more slowly (perhaps wait two day before each tweak).

 

We all differ in the way our bodies react so it is very important to recognise our own patterns. However, a problem is when we become unwell it is more difficult for us to think straight. I find it helps me to have prepared good guidance notes for myself and easily accessible to my nearest and dearest.

 

I hope the above makes sense and you find it helpful. Hang on to your determination to try to get to the bottom of what is going on and to get through this very difficult time for you. M

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clemmie

So, I’ve had the results from the Covid test and that’s negative which is good but still feeling extremely unwell. Awaiting blood test results hopefully today and fingers crossed they will show something. In the meantime I need to reduce hydrocortisone dose from the quadrupled dose. What is the best way to do this please? 

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annelben

Hi Clemmie

Very glad to hear it isn't Covid but hope your tests show up what else may be wrong. 

It's often advised to reduce from the late dose first then gradually work back to the morning one. 

Anne

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clemmie

I apparently have a gut infection and mild electrolyte imbalance (probably from the diarrhoea. So I now have 2 lots of antibiotics (unfortunately ones that I know make me as sick as a dog) so trying to work out when I can take them that I won’t be sick within an hour of taking hydrocortisone. Thanks for all your advice. 
Clemmie

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edithpaul

Clemmie, I haven't got any good advice but I was so sorry to hear how poorly you've been feeling.  I hope the antibiotics kick in soon, that you feel better, and can get home before long.

All best wishes. Edith

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suep1954

How are you Clemmie? 

 

Sue

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clemmie

Hi Sue,

 

Im gradually improving, thanks, so believe it was the gut infection causing low sodium which was making me feel so ill. I suspected that it was low sodium as I’ve had it before but it was like waiting for them to pull teeth to actually take blood to test it! I’d even been eating salt from my hand to try to keep it up. Never mind, I’m certainly on the mend now, thankfully. And I’ve also managed to get booked onto a repatriation flight at the end of next week which is a load off my mind although my husband will have to stay here until usual international flights resume and he can take some leave. At least we’ve had all this time together for a change.

 

Thank you all for your advice and good wishes.

Clemmie

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alison63

Good news.

Alison xxx

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suep1954

Excellent news Clemmie. Let us know when you are back in the UK safe and sound. 

 

Sue

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The Addison’s Disease Self-Help Group is the support group for people with Addison’s disease or adrenal insufficiency and their families in the UK and Ireland.The group was formed in 1984 and is a UK registered charity no. 1179825.

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