I would like to ask anyone who had adrenal insufficiency what kind of symptoms you had and how did u deal with it!?I have seen Dr P and he has put me on Adrenavive 11 and iam starting it tomorrow.I have hissing in ears for many month diahrea stomach pain ,dizziness anxiety phobia palpitations and low blood sugar drops high bp which is eased by something sweet but I ain’t got diabetes.Iam currently on 1/2 grain NTD and 1/4 grain afternoon (not optimal dose as can’t raise due to my adrenal issue).Dr P did some tests and said I have got definitely adrenal issues which needs addressing ASAP so I can’t raise my dose -feeling worse.Anyone who has any advice for me or anything upon using adrenal supplements or what you had when you realised adrenals are the cause!? How long it took for you to be ok and did u start with a lower dose? Thank you
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There is a difference between Adrenal Insufficiency and adrenal fatigue. Adrenal fatigue is not considered to be an actual medical condition ( don’t shoot the messenger - I am only say!) whereas AI can lead to a medical emergency and death. If Dr P really believes that you have AI then it is remiss of him not to ensure that you have a SST to check whether your adrenal glands are able,to produce cortisol. I have AI and felt like I was dieing. When I had a SST I was told that it was flat and I had to start taking hydrocortisone immediately which I will have to continue for the rest of my life. I suggest that you need to speak to your GP about your concerns and request a referral to an endocrinologist to get a SST done.
What is SST? Iam having some kind of adrenal injection test tomorrow where they take a blood sample and than give u injection and than after 30min take another sample and after 30min again another is this the one u r talking about?did u have hissing in ears and painful spine joints and stomach pain sharp?i had cortisol saliva test it was producing cortisol but it was a bit on low side
Yes, that is a Short Synacthin Test, that you are having, that’s good news. I had severe nausea, loss of appetite, loss of over 2stones in weight over 3 months, crushing headaches, abdominal pain, hissing in my ears ( but had that for years,) salt cravings, no energy ( couldn’t even lift my arms up to wash my hair in the shower!) , shaking. As I said, I really believed that I was dieing! When I saw the endocrinologist she said “you poor thing, you must have been feeling so ill!” But now, taking the hydrocortisone has made such a difference to my life. I still get extremely tired but it’s still early days ( only diagnosed end of November). All I know is that I couldn’t have continued the way I was feeling and I thank God every day that my gastroenterologist suggested the SST when he did. I was lucky, I was only really ill for 5-6 Mo the, there are many who are unwell for much much longer. When you have your SST don’t walk around too much in between the blood tests and don’t eat or drink. If it turns out that your cortisol is very low, you will hear pretty quickly - I was called the following day and saw the end that afternoon. If it’s borderline, you may need further testing.
What did they do first? Did u have some kind of injection to fix it? Iam having exactly same thing as u?has hissing gone and abdominal pain pressure in head and dizziness fainting attacks? I can’t handle this anymore I feel so ill...pain ins tomach with faulty smell stool and lose stools yellow colour coming! I am internally cold all the time shaky dizzy low sugar ! Did u have any side effects on that adrenal medication? Dr P is trying to put me on natural Adrenal thing called Adrenavive 2 from tomorrow! Should I start it or?
Please answer on my pervious questions I was asking I really need support and u know how I feel so dreadful at the minute I feel also like Iam dying anxiety shakiness stomach in such a pain sharp pain I can’t deal with this hissing in ears is just crazy so loud
As Clemmie says below, don't take any medications or supplements before your test tomorrow. Just rest. Go to bed early and let the doctors do their work tomorrow.
I have answered your questions. I certainly wouldn’t start any of the stuff from Dr P until after the SST. Then if it shows you have AI you will start the correct medication - anything else could hide the real symptoms.. I was immediately given hydrocortisone tablets.
Thank you I hope for the best tomorrow also scared from injection
I'm glad that they are testing you for adrenal insufficiency, I got worried that you were talking about adrenal fatigue which isn't a recognised condition. The SST will determine whether you have adrenal insufficiency or not. If you do have it they will start you on Hydrocortisone which you will probably have to take for the rest of your life. I also have adrenal insufficiency but from a pituitary tumour but the treatment is the same. let us know what your results are & Barrister & I will try & help & support you. Good luck for tomorrow - it will be fine.
How did u find out that u have adrenal insufficiency? Any signs symptoms?iam literally crying everyday from pain in my abdomen back and everywhere else .I can not live liek that .Iam Hashimotos and hypo and can not find the right medication and right dose for me .i am trying to raise the dose slowly and i can’t as Iam having adverse effects NDT ,T3 and Levothyroxine....I was on t3 and it gave me shakiness diahrea stomach pain dizziness and all sorts even on a small dose now trying ndt Nature Thiroyd and cant up the dose as having adverse side effects-again sharp stomach pain dizziness hissing in ears(that’s for a long time now ) .Does it sound like adrenal issues.i am weak no power at all for anything .
Hi there I have had my SST results back before test cortisol 227nmol than after 30min 516 nmol and than after 60min 623.when I was asking him ranges he couldn’t answer just said iam in range any suggestions ?
It's showing that your adrenals are working well to produce cortisol as they responded to the injection. I think this rules out a diagnosis of adrenal insufficiency.
Have a look on the Addisons.org.uk website or if you are Facebook then go onto UK Addisons disease help & support group, there are some knowledgeable people on there.
My adrenal insufficiency came as a result of treatment for a pituitary tumour which caused Cushing's disease which is high cortisol, once the tumour was removed I then didn't have enough cortisol so need to take steroids to live. Low cortisol will cause weakness & feeling faint, you may lose weight as well. Have you had the results yet from the SST?
I have Hashimoto’s and that’s very common when you have another autoimmune disorder.
I, too, looked for Addison’s in this group, but wasn’t too surprised to find that there was no mention of this horrible disease.
You see, we are very rare indeed. About 5 of us in a room of 1,000,000. Most people have no idea what this is. Most doctor’s don’t either. Because it’s so rare, research 🔬 dollar are not allocated to us, Med school teaches our future doctors about us in less than 30 minutes in a lecture one day out of years. Nurses, nutritionists, PT, OT, ER doctors, hospitalists, etc. don’t know either. It is a very lonely disease indeed.
I won’t lie to you and tell you it gets so much better, but I will tell you that you need to become your OWN best advocate to survive. If you’d like more information or questions answered, just let me know. I’ve been diagnosed from my deathbed 10 years ago. You aren’t alone now.
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