LOW CORTISOL ADDISONS DISEASE: hi everyone I have... - Thyroid UK

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LOW CORTISOL ADDISONS DISEASE

hi everyone I have hashimotos and PA currently on T3 and T4.

feeling weak and extremely tired. My endo sent me for a short synathen test , which revealed low cortisol. He has sent me for 2 more tests short synathen antibodies and ACTH test. Which came back abnormal. I’m to get the results shortly through the post. I’ve been to see him today and he’s diagnosed adrenal fatigue. Addison’s disease and started me on 10 hydrocortisone in the morning and 5 at 3pm.

He’s told me it’s very rare and I will be on this steroid medication for life. I’m not happy about taking steroids but just want to feel better.

Has anyone else got hashimotos and Addison’s? Any advice about what to expect from the steroids greatly appreciated

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sorry I don't know much about this but I'm am surprised he has said treatment for life. I hope someone answers youbpost soon but read up what you can and that may give you an idea what questions you need to be asking.

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Hi I have Hashimoto since 1983 and Primary Autoimune Addisons since 2015. Yes, Addisons is rare, in the UK (where I live) its 1 in 10 000 people. But there is excellent support through ADSHG, Addisons Disease Self Help Group that group has been my lifeline. I would really recommend you to join. But even without becoming member you can read lots of excellent materials. addisons.org.uk

There are also 2 excellent support group on Facebook that I find very helpful and very supportive. UK group is UK Addisons Disease Support Group and group US based (but open to anyone) is Adrenal Diseases Support Group.

Yes, with Addisons Disease we need to take Hydrocortisone for life, it is,fyziological replacement of Cortisol that are adrenalin glands cannot make. If we stop Hydrocortisone we will have Addisons Crisis and die. There is lots to learn, but there is,lot of great support online and most peoole live life without many problems.

Best wishes

Jana

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Thank you so much . I will join there. It’s funny I’ve both have hashimotos and Addison’s. Yes he told me it was rare. Just getting my head round the steroids. I’m dairy and gluten free it says they contain lactose . So not sure about that

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Hi Sporty-mi,

I am sensitive to gluten and lactose (not celiac) so I chose gluten free and lactose free diet. I think there is brand of Hydrocortisone that does not contain lactose, but I cannot remember which one. if you ask at Facebook group you will receive reply usually very soon. I am fine with Hydrocortisone and Fludrocortisone with Lactose in it as I can tolerate small amounts of Lactose.

Both Hashimoto and Primary Addisons are autoimunne endocrine ilnesses so they often go together and we and our GP and endocrinologist need to watch for us in case we might start developing other autoimunne endocrine illnesses (such as diabetes type 1). You dont need to worry about it its just important to be aware it can / but does not have to happen

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Hi Sporty-mi,

I take hydrocortisone for secondary adrenal insufficiency, Addison’s is primary adrenal insufficiency caused by failure of the adrenal glands. Mine is caused because there is a problem with my ACTH caused by failure of my Pituitary. Both conditions are the same but with different causes.

It is rare and GPs don’t really understand the seriousness of it. If I was you would join the Addison’s support group, I belong to the Pituitary Foundation.

The good news is I started hydrocortisone in 2012, it made such a wonderful difference to my life losing the tiredness and feeling so weak. Feels like I’ve been reborn.

I started on the same dose as you, but neede to experiment and now take 15mg at breakfast and 5mg at lunch.

If I am unwell have to increase my dose, and have an injection kit in case of collapse. Best find out about sick day rules. My endo has advised the ambulance service about me. Found it a bit daunting initially but now my life is so much better and I can do so much more it’s no problem.

Hope it helps you to feel better.

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Thank you so much for your reply. Yes I will join them. It’s a bit scary and overwealming at the mo. I hope I’m like you when I’ve taken the tabs. I’m fed up feeling so I’ll and I’ve had to go part time at work. And struggling financially as well as fatigue.

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Hope you find like me you feel you can climb mountains again. Not that I can but it’s a good feeling.

Suggest you speak to your endo about your fears, because if you have true adrenal insufficiency if left untreated you can die. Don’t want to frighten you but best be safe.

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You may also be interested reading about steroid withdrawal and the devastating effects that long term steroid use can have on your body! I went through this in 2014 which is why I prefer to try complete lifestyle changes to manage my thyroid issue instead of being subject to yet more side effects from medication. Of course, it's a personal choice but I believe that doctors are too quick to give out medication and in the background 'big pharmaceutical companies' are making millions. Once you take steroid medication your adrenal glands will no longer make cortisol, what we need to do in my opinion is work on kickstarting our adrenals naturally. Check out steroid withdrawal, red skin syndrome and ITSAN website. It will tell you the truth about both topical steroids and predinisolone etc. Good luck

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God that sound awful 😢. I would prefer to try some natural help but I’m not sure what is out there. What are you taking josie I’m in the uk

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I don't take anything! I stopped steroids in 2014 after using them topically and in tablet form on and off for around 40 years. Since then my skin and asthma has improved dramatically with only dietary and lifestyle changes. Unfortunately, now though I have had a goiter for over 11 months and now lots of pain in my left arm which I believe is connected. My bloods have come back pretty much normal but I clearly have some problem with my thyroid. I also had a scan which showed the goiter is a 3 on a scale of 1-5, I live in France and if it gets bigger I'll need surgery to have it removed. I'm just fighting against going on meds because of my history and the devastating side effects some of them can have. Cleaning up your diet is essential, sugar feeds disease, and I have started taking apple cider vinegar daily, there is so much information out there, its very hard to cut out the things we enjoy and easier to take pills but our bodies are crying out for nourishment.. I've also started meditating to see if that might help! Good luck

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Thanks .. I’m already dairy and gluten free and eat healthy diet. Will see how I get on. Thanks again

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HC is the most natural thing (better than prednisone, for example) - it's a bit like thyroid hormones: it's replacing something that your body cannot make and without which you will die.

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If you have Addison’s your adrenals cannot make cortisol that’s what causes the problem. However, you are right and why it’s dangerous to supplement without having proper investigations because your adrenals will stop working naturally.

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If Sporty -me has been diagnosed with adrenal insufficiency by a recognised test then she will need steroids to live - her adrenals are already compromised. It is dangerous to tell her not that she may not need to take steroids! I have secondary adrenal insufficiency & have to take Hydrocortisone to live - it is a replacement drug not an additional one so if it is taken as suggested by the Endo then she will not experience the side effects that you have described.

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Hi sporty

I have primary addison's and hashimoto.I have been taking hydrocortisone and fludrocortisone for 16 years and like mullionaire said have been fine with it.When i found out I had addisons I had lost 3 stone in weight,I felt light head when standing and exhausted.As soon as I started to take the steroids my weight came back and my energy levels up. Don't worry you'll soon be back flipping to work.

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Thank you brew for taking time out to reply. Very kind. I’m on T4 and T3 for hashi and he’s just started me on hydrocortisone but I’m not on fludrocortisobe . Not sure what that is ! Should I be on it ? Lol I you sound full of life. I hope I’m as upbeat as you x

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From what I understand, your overall health should improve if your adrenals are supported. Many Hashi's patients have issues with their adrenals which, although it falls short of Addison's Disease, can be a barrier to them getting well unless addressed. The meds you have been given are just replacing what your body can't make itself.

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If it is Addisons, it is an autoimmune disease like Hashis and so it won't go away. It can be very dangerous, so you should carry a card or pendant explaining that you have it. You may also need an increase in HC if you do anything stressful, so you don't end up in a coma, but your GP should explain all that to you.

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Thanks angel for taking time to reply. Really appreciate the support. As I’m on my own trying to take it all in !

Yes they told me I need an id bracelet or something. I wasn’t taking it all in. I said I don’t like the idea of taking steroids as well as all thyroid drugs but he said if I didn’t I would go into crisis and die ! X

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You'll only be replacing cortisone to the level that your adrenals should be making it, so don't worry about the side effects that people with working adrenals get from long-term steroid use - it's not the same.

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I think your doctor will tell you this is a rare condition as partly - the medical community doesn't join the dots with this type of illness - and there will be hundreds of thousands of people in the world who are undiagnosed with this condition.

Autoimmune disease means antibodies attack certain glands -that's what starts things - that can be the thyroid just as much as it can be the adrenals. Stress and diet are contributors to this. I can guarantee its more common than people think.

Im only on fludro - its changing my life so far, but am considering hydro as well, Im noticing less energy overall but Im finally retaining salt and water, and bringing my BP up.

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Sporty-mi,

When you are taking steroid medication such as HC your GP should monitor your potassium levels. Steroids can lower potassium and low potassium can make you feel very unwell. If your potassium is low you would need to take slow release potassium... I hope you will start feel much better soon. Take care

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Thanks everyone I’m currently sat in Docs for blood tests. Fingers x

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I was diagnosed with Addison disease in September, after being very ill, it took ages to get a diagnosis. I take 15mg of hydrocortisone daily split into 2 doses. The hydrocortisone makes me feel so much better, although I have put on weight but to be fair I have been over eating! I get a repeat of the short synth test tomorrow, so will see what they say

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