Secondary adrenal insufficiency

[McPammy]

Hi, please can anyone help me.

I have recently been in hospital on 2 separate occasions lasting 12 days. I collapsed and was taken in. My cortisol level was 68. They then did a short synacthen test on me. I passed.

They then sent me to a cardiac ward for 5 days. All tests came back negative. With the exception of a tilt test showed up adrenal insufficiency. I was then discharged with postural hypertension. Joke!

I could still not walk properly. My energy and strength nearly none existent. I went to see my GP who sent me straight back to emergency. I had a further short synacthen test done. Again I passed however, this time, as I was an outpatient I left the hospital as though nothing was wrong with me. Struggled to walk in there left with a strut on. Incredible. I thought well that’s it then. The signal from my pituitary was not being sent to my adrenals. I then had a head MRI and abdominals CT scan the following week. Nothing showed up as wrong. I had further 3 blood tests in one day for cortical as my weakness was getting worse. 9am = 270. 12.30pm = 144 and 6pm = 69. I staggered into the hospital for these tests. The following day I was really unwell and crashing out. My phone rang at same time. My GP asking me could I get myself to hospital straight away as cortisol too low. I got there with the help of my partner fast. Then for 5 days nothing happened only keeping my blood press., heart rate and oxygen levels updated. I requested they do more blood tests. This was point blank refused. I couldn’t understand as it seemed important to know where my levels were. My consultant on first 2 days seemed not that bothered and said he may never know what is wrong with me. I said I hoped so as normally I am a fit and healthy woman and have a full time job. I do have under active thyroid but the levels appeared to be ok. I was about to discharge myself and go private when on my last morning in hospital a new consultant arrived as my previous consultant had gone on holiday for 3 weeks and didn’t even mention that. The new consultant finally understood where I was coming from and understood my condition. He ordered 6 shots of B12 loading and hydrocortisone 10mg. Told me to go home for proper rest as not good to be in hospital with autoimmune disease too. I went home and within 24 hours got worse. I have started my hydrocortisone a week ago now. There is a slight improvement from laying in bed or laying in the sofa daily. Walking via my hands and knees to get to the toilet. Wheel chair to get my B12 injections at GP surgery as NHS refused to send out a district nurse to my home saying my case, although I couldn’t walk or sit up and live on my own, was not worthy enough.

My new consultant had told me to increase my hydrocortisone to 20 at 8 am and 10 at 2pm. Still only slight improvement. As I am also taking 75mcg of Levothyroxine daily. Will this interfere with each other is one cancelling one out or something. It does say in the warning to not take together due to contraindications.

Has anyone had similar experience. I’m desperate to get back to normal and get back to work. I’ve bern off work now for 7 weeks with no pay as I’m set up as a Limited Co presently with my current employment in the UK

Sorry for long story I just want to reach out to see how long this illness takes to recover and if underactice thyroid and low cortisol issues are resolvable.

Many thanks. P.

[greygoose]

Do you have copies of your blood test results - adrenal and thyroid? If so, it would be a good idea to post them her - with the ranges - so that we can see what's going on.

[McPammy in reply to greygoose]

Hi

Firstly thank you for responding. I am so desperate right now. This all started in late Feb early Mar feeling really tired, dehydrated and confused.

My readings are as follows:

On 27 March 18

T4 = 15.4 range 7.86 to 14.41

TSH = 1.45 range 0.35 to 5.50

9am cortisol = 307.

At this point my GP increased my Levothyroxine from 75mcg to 100mcg - looking back I think it should have been reduced or stayed the same at least. When I took the first increase. That day my system went haywire. I was overloaded with what I think was cortisol. I was in a state as it lasted over 6 hours. I went to A&E. They said nothing was wrong and sent me away.

23 Apr 18

T4 = 12.9

TSH = 0.6

Cortisol = 221

17 May 18

Short synacthen test results

Cortisol = 215 09.39am

485. 10.09am

527. 10.39am

Free T4 = 13.6

TSH = 0.22 low

Free T3 = 3.90

TGAABS = 0.3

5 June 18

Cortisol 9am = 270

Cortisol 12.30pm = 144

Cortisol 18.30pm = 69

Hope this helps and hope this is what you need.

My problem is that I cannot walk fir more than about 6/7 steps without my legs crumbling beneath me. My arms and hands are very heavy. I feel nauseous every evening. I’m best laying down flat. Think this helps with my low blood pressure. This has been going on for 7 weeks now. I live alone but have a partner to come and help. Without them I don’t know what I would have done. Every little thing even making a cup of tea is draing what little energy I have. Today I have taken 20 then 10 hydrocortisone and still feel very weak along with my 75mcg Levothyroxine.

I feel I am out of my depth with this and would love to hear if you or anyone feels this way and how to deal with it. My mind and mouth seem to be fine except when I get depressed when levels run very low. It seems to pull me down not only in strength but mood also.

Thank you so much for your previous email

Pam x

[greygoose in reply to McPammy]

You're FT3 looks very low. Do you have a range for it?

[McPammy in reply to greygoose]

Ye, it did look low! Didn’t notice that!! The range is 3.7 to 6.00 mine was 3.9

What would that indicate please, do you know

Thank you !

........

[greygoose in reply to McPammy]

Well, it's low FT3 that makes you hypo and causes symptoms. Nothing to do with the TSH. But your FT4 is over mid-range, so you really don't convert very well.

[McPammy in reply to greygoose]

Thank you for high lighting about my T3. I’m seeing my consultant on Friday. I will point this out. I will also get the results from the 2nd SST which I passed and see what those results could reveal

Many thank again

Pam

[greygoose in reply to McPammy]

OK, but don't be surprised if your consultant tells you your FT3 is fine. They have no idea!

[Hidden]

You quite clearly have secondary adrenal insufficiency - the first Endo clearly did not have enough experience of pituitary/adrenal issues!! The second has been a bit better but is still not well versed in it but at least he is treating you with Hydrocortisone, however I bet he didn't give you a great deal of understanding of the condition & how to treat you. It's old fashioned to give Hydrocortisone just twice a day, most of us with Primary & Secondary adrenal insufficiency take out HC at least 3 times a day , splitting the total dose into smaller doses. Did he tell you to take the first dose at least an hour before you get out of bed? People with normal function start to make cortisol around 3am in the morning so that cortisol is at the highest level when we need it ie getting up. Your cortisol levels at 8-9am in the morning should be around 400-500, yours certainly isn't! Cortisol drops during the day but there is always some in your body even overnight. HC only last in the body for between 4-6 hours so by taking it just twice a day you will have long periods without any HC in your body. Hang in there it will improve but does take time. If you are on Facebook then join the UK Addisons info & support group as you will get lots of hep & advice on there with people who are living with it on a daily basis. If you want to message me feel free. Pauline

[Hidden]

Although you stimmed on the SST test by doubling the results the low cortisol still point to secondary adrenal insufficiency.

[McPammy in reply to Hidden]

Hi Pauline. Yes it would seem so. We still haven’t found the cause as yet unfortunately.

Thank you!!

[McPammy in reply to McPammy]

I managed to get bloods done today at hospital. I will let you know the outcome. Thanks Pauline. You’ve been brilliant

Pam

[Supul]

I'm sorry, I can't help you with knowledge.

However, I experienced some of your symptoms 4 years ago. A reflexology practitioner loaned me Dr Peatfield book, how to look after your thyroid, after telling me my body was shutting down.

I cried as I read the book, was too weak, ill, to see him. I stayed ill for weeks, then read the book again. I immediately booked an appointment with Dr P.

In my opinion, he is your man, in the area of both thyroid and adrenal dysfunction.

Google him. Buy the book. Make an appointment face to face or telephone (if that's allowed first time). I think he can help you. He does have the knowledge!

Good luck. Wishing you well soon.

[Ari3]

I do agree with Supul what he/she said about dr P.Yes u should see him .Iam treating my adrenals with him I had few set backs and still iam only in the beginning of my jorney but I know I will get there.i reached 1 capsule of Adrenavive II and got temp 37.2 and had jittery feeling so it meant that my adrenals started to work and had thyroxic symptoms so had to stop everything and start with 1/4 Adrenavive only ( I was on 1/4 ndt and 1/4ndt too) but had to stop all.as it started to work so quickly that in two weeks time my tsh went from 11 to 5 only on 1/4 ndt and 1/4 ndt ( had started second dose two weeks ) so it will help you greatly .if u need his contact details I will pm you.I am so sorry to hear you struggle I wish I could help you in any ways and give u a huge hug saying that u will get better! Dr P is a great man and he knows what he is doing !

[McPammy in reply to Ari3]

Thank you for your message. I am seeing my consultant this Friday. He is supposed to be brilliant. I hope so much that he is as I cannot live out my life like this. I’m determined to get this sorted. I will keep you posted!!

Btw I’m dreadful today.

Thanks

Pam

[Angel_of_the_North]

Much the same thing happened to me, although I wasn't quite as bad as you. At least you got HC. I was just discharged. Took me many years to get right using adrenal glandulars, lots of rest and meditation. Still have to be careful. I also run a Ltd Co so I know what you mean. At least your GP seems to be on your side. Mine just said the blood tests were normal and it didn't matter if I was unable to get off the floor, there was nothing wrong with me.

[McPammy]

Oh my good god. That is awful. I do not understand why people are turned away when clearly they are so unwell. I have only got to getting attention I believe due to reporting my first admission in May to PALS. This is a NHS complaints service. And being persistent in going to GP and double checking my test results and challenging anything I see that has not been explained or tests showing low etc. You can request all your hospital notes at anytime now too. I just wish this disease was properly managed by the NHS. Also don’t get it that they only take one cortisol blood test at 9am when this is the highest it will go. What about lunch time and end of day too. They just want to turn away as many people as they can unless it’s a crisis it would seem. I still can hardly walk with lack of strength even in the mornings. Just been for full thyroid bloods and cortisol again after pleading with the Dr who didn’t want to do it. I said I cannot understand as if a patient had a heart condition would you leave them and not do any tests. This to me is the same difference. I do not know why adrenal issues are left to crisis point and people just get sent away. It’s crazy. I read somewhere that 75% of cases are diagnosed from post mortams!!

Hope your feeling ok today. I seem to be getting worse.

Take care

Pam

[Ari3 in reply to McPammy]

Someone needs to shout out loud about this issue this is crazy and against he same question goes to Nhs and doctors -WHY?

[Ari3]

This is what they did to me checked if I ain’t got Addison’s that’s all SSt test said all is good where as I wasn’t at all faint and diahrea feeling powerlesss dizzy it is nightmare.I did 24 hrs cortisol test private one and it showed very low cortisol nearly all readings but it wasn’t below normal but it was pretty low.So addressing adrenals is such a big thing I can not stress out

[endomad]

I have a good endo (3rd one) he us great ref my thyroid which was removed 2009 but knows nothing of adrenal. 2015 my 9am cortisol 105 (150-550) within 30 mins of sst 650 (150-550) my then endo said it was near enough!!! I was way under and then way over. Sst made me seriously ill for 7 days blurred vision vomiting shaking. My gp was spooked by it but again endo said nothing wrong. Last October new endo did cortisol test 9am result was 95 so it has dropped further. I have refused 2nd sst as so ill last time. Tbh I don't think they know what to do. My saliva test Dec 2017 are all under range. Endo gave me HC for emergency stress but he and I agree don't want to rely on hc for life. I started adrenavive 111 few months back but still lack energy and strength. I wonder whether too low cortisol for 3 years has done permanent damage to adrenals as I am no longer able to tolerate stress and get really tired easily. I am argumentative because I don't want to spend time discussing stuff lol your results are better than mine cortisol wise so be open to it may be something else or a combination of things as us so usual for hypo/adrenal stuff. All they seem to understand is addisons/cushions but not what's leading up to it. I think most long term illness these days are self research and self treat xx I hope you find some answers x