Addison's new diagnosis and very confused

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Sorry for asking so many questions but is it normal to not feel hungry at all? Even with the steriods I don't want to eat. Maybe it's because when I do eat my stomach hurts so bad. I've had so many stomach problems. I had to have 5 bowel obstruction surgeries in the last 2 years. They ended up removing 2 ft of my large intestine in December. So I am constantly in pain everyday. I figured I'd have felt better by now. I've been on the steriods for 4 days now. 20mg in the morning and 10 in the evening. I took my 20 mg this morning and within and hour I had to go lay back down. I slept till 5, took my 10mg and made the kids dinner. Now my stomach hurts to the point of me doubling over And I'm really light headed. I don't want to go back to the hospital but is there anything I can do? I thought taking the steriods would help give me the energy I miss so dearly. I just feel so exhausted all the time. Someone please help. I am so lost.

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  • Posted

    I've only been diagnosed for 5 months. I can tell you that I was first put on hydrocortisone only and then ended back up in the hospital. I told the doctor that I thought I should have been on Fludrocortizon. The doctor started me on the 100milligrams per day it helped balance everything out. Ask your doctor about Fludrocortizon.

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  • Posted

    Hi Nichole

    Look, there are things I am sure of. Other things I do not know about, I do not answer to the 'new discussion'.

    First  of all: are you taking anything for your bowel obstructions, for the pain? do you have lots of intestinal gas? If the answer is Yes, then perhaps you could take flax meal with your breakfast cereal. It has helped me a lot !!!. I Tbsp or whatever they recommend in the packet/pot you buy of it in your country. (I live in Australia).

    It takes time for the steroids to work... are you taking HC (Hydrocortisone? If so: DO NOT TAKE MORE THAN 20 mg/day of HC 10 mg at say, 8 am and another 10 at 4 pm. NEVER TAKE MORE THAN 20 mg/day of HC. I can explain why another day when you feel better. You know that you must not eat refined carbohydrates do you not? or things with sugar or fruit. Eat protein and veggies and coconut or almond milk, eat nuts, but NO BREAD OF ANY KIND. Do you eat gluten? Do you know about gluten? Just as an experiment eat without gluten. You may get instant relief from that. Do not take your HC with empty stomach. Of course drink your 8 glasses of water a day. I have had surgery like you. I have irritable bowel syndrome... I hope this email helps you. Please let me know. Ah! one more thing: are you hypothyroid?

    Be good...

    monsie

    PS HC is the medication recommended by the World Health Organisation for the treatment of adrenal insufficiency or Addison's disease. No other steroids please!.

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    • Posted

      If your endo prescribes more than 20mg a day, then after 8 years in med school, specialist training and residency, I think they are more likely to what you need than anyone on here!

      Please remember that hydrocortisone/fludrocortisone are copies of cortisol, the natural steroid. that your adrenal glands should be producing when working properly. So if you got sick or had an accident, normal adrenals would pump out many times extra to help the rest of your body deal with the drama. Hopefully your endo told you that if you get sick, you need to double your dose. If you are in an accident, you need 100mg injection asap or you will have an adrenal crisis that can be fatal. Cortisol (and its copies) are anti-inflamatories so hopefully things will settle down in a few days. Make sure you eat or at least have lots of water when you take them because they can irritate your stomach. I assume you've been told to keep off ibuprofen and aspirin for the same reason.

      For people with normal adrenal function, Monsie is right about strictly limiting dosage but your case is different.

      Flax seed is also known as linseed. It has to be ground eg in a coffee grinder as otherwise it will just go in one end and out the other unscathed - and it doesn't keep long in powder form. I have no idea whether or not it has the cleansing effect suggested but it is very nutritious.

      Please don't hesitate to ask your doc to call, you clearly are not a time-waster,

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    • Posted

      I was recommended to take 30 mg of Hydrocortisone a day. I have had some side effects well known to doctors such as a bad osteoporosis just to name one. In my case I was diagnosed Addison's disease in June 2015. In September 2015 I was told by another endocrinologist at I did not have Addison's. He could see that only looking at me. No tests done. He said he wanted me to give up HC immediately. HC cannot be stopped suddenly because it can lead to an adrenal crisis. So, 2 different opinion from to different doctors...!!!   As for 8 years, when a person has Addison's disease, the 8 years is not the rule. The person has to take it for life. But NEVER MORE THAT 20 mg/day which is called the  dose. I do not know about 'copies' of cortisone. What I know is that the World Health Organisation recommends HC as a first choice for adrenal insufficiency and Addison's disease which is the autoimmune version of adrenal insufficiency. I also know that fludrocortisone (I am not sure of the spelling), also gives side effects... of a different kind to the HC.

      Different doctors have a different vision and approach and agenda... depending in many, many factors an pressures and vested interests so to speak.

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    • Posted

      I just want to jump in here as someone who also has Addison's disease. 

      Telling people that they should take NEVER MORE THAN 20mg/day of HC is terrible advice and should not be listened to.

      Primarily you should be taking the dose specified by your endocrinologist (usually around 20-25mg of HC per day), along with fludrocortisone (0.05-0.1mg per day). Again, this is just an average and every case is different.

      But more importantly, Addison's patients also need to be able to listen to their bodies and adjust their dosages accordingly.

      Having an overly stressful day or exercising an excessive amount -> increase your HC.

      Sick with a flu/virus/fever (not just a head cold) -> you should be DOUBLING your daily dose of HC.

      A daily dose of 20mg/day is on the low side of average for a patient with Addison's Disease, not a strict DO NOT EXCEED limit. To tell people so is frankly dangerous and grossly ill informed.

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    • Posted

      Hi, look, 20 mg is the physiological amount of cortisol produced by the adrenal glands. When a patient takes more than that, its effects are of 'medication' instead of support to the adrenals. I do not know the correct words for it. Fludrocortisone is only necessary if in the Electrolytes blood tests  sodium and potassium are not in range. My partner and myself have never had problems with sodium and potassium, they have always been within range. Because we have had more than 20 mg/day of cortisol, we are now finding it very difficult to come out of it.  Our own cortisol production is very low, we are dependent on hc We were listening to our bodies and increasing the amount of hc. Our body symptoms were from hypothyroidism. Adrenal insufficiency (we have not been diagnosed Addison's by any of the 8 endocrinologists we have seen since Sept 2015), and hypothyroidism symptoms can be mixed up.

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  • Posted

    Nichole:

    I forgot to answer your question. Yes it is common not to feel hungry. Just eat what you can... pick and choose things that take your fancy within the restrictions...lol

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