I have secondary adrenal insufficiency.

I started posting on this platform about two weeks ago. I had hardly any idea as to what was wrong with me. I now know I have adrenal insufficiency and it’s secondary not primary. The doctor put me on 5 mg of prednisone daily. I thought and so did the doctor I would feel better. He said it would be immediate. It’s been 5 Days. I told the doctor I didn’t feel any better. They are scheduling me for an MRI of my pituitary gland. I’m not sure why the prednisone did not make me feel any better at all. If anyone has any thoughts on this feel free to give me your opinion.

Thanks

Still trying to feel better

😔

Angela

108 Replies

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  • Hey sorry to hear that you are not well but interested in following your thread.

    How did you get diagnosed? When I suggested adrenal insufficiency to my doctor as a possible cause to my symptoms she just dismissed me.

  • I was dismissed as well. I have hypothyroidism so when my number finally came into line and I still didn’t feel well. (My numbers were low-I know the range is wide). I am so lethargic I don’t wake up. I’m not functioning and blood pressure running low. Usually it’s 70/51 about something like that. I went to an endocrinologist and basically said I don’t want alternative medicine. I would just like a real definitive yes or no if I have adrenal insufficiency. He said ok. You probably don’t but we will test you within in 10 Days the Dr.has finally seen I’m not just another fatigue, overwhelmed, overworked mom. My number was 13. Anything 18 and above is considered not adrenal insufficiency.

    Then they did a second test. This came back a couple days later revealing not primary adrenal insufficiency but secondary adrenal insufficiency. Which means something else is causing it. They are setting up a time for MRI this week. Check for possible tumor on the pituitary gland. The prednisone 5mg has not helped at all. The doctor said it would be immediate but that has not been the case. 😔

  • I also have adrenal insufficiency. My Dr put me on Hydrcortisal 15mg in morning and 10mg by 4pm. It will help build up your cortisol. My levels are at 8 in the morning. I found out that I had this because I went thru Adrenal Crisis and was in the ICU. Brain scan and adrenal test proved that was my diagnosis/ Addison Disease. I Hope that you find the right Endocrinologist to help you.

  • Got some good news just been to the docs and she has agreed to look in to my adrenals! I've ordered a saliva test kit and am going to take results to her as I believe the blood test is not reliable unless your at addissons stage!

  • That’s great. From what I was told saliva test will rule out cushings. I had saliva test but then was sent to hospital to have a drug injection into me. They took a blood sample first. Then an IV where the injected a drug that is suppose to mimic something your body does and then measures the ACTH in your blood. They took more blood in 30 minutes and another sample at 60 minutes. I’m in the United States. The endocrinologist told me that if the results came back on first test lower than 18 then you are considered to have adrenal insufficiency. Mine was 13. So yes I was adrenal insufficient.

    Then the second test they run from those blood samples told if I had primary or secondary. My number was lower than 5.4 which meant it was secondary. If the number would have been high it would have been primary. Secondary means something else is causing it. They are setting me up for an MRI to see if there is a tumor on my pituitary gland that would make my pituitary gland not function correctly.

    The saliva test you are ordering. ??

    Is it for a 24 hour test.

    Or the one over a 3 day period of time.

    The endocrinologist told me that the saliva test (24 hour) was not the same test that measures cortisol that goes to each of your organs. There is a difference. I only say this because I couldn’t get treatment with just the saliva test. They had to do blood work too. Otherwise my insurance would not medically pay for it.

    I don’t really understand all of it. But I’m learning. My saliva test basically came back flat. My saliva in a 24 hour period, if you looked at a graph was flat for 24 hours. So it showed the tiny bit in my system. I don’t understand the statement saliva cortisol test is not the same saliva that goes to your organs. However the saliva test taken over 3 Days is a better indicator. I would love to hear results when you are finished with Saliva test.

    Let us know which type of test and the time, day and result level of each test. I’m in the United States so let me know where you are from as well. ❤️Good News they are willing to look into things. Nothing worse than being blown off and handed a script for anti depressants. Much luck to you. 🍀

  • Doctors always think the relief is going to be immediate! They can't tell the difference between hormones and aspirin. Perhaps you're just going to need an increase in dose. :)

  • Grey goose

    Did they do an MRI of your pituitary to check for abnormalities putting pressure on the pituitary, like a tumor?

  • I did have an MRI - in fact, I think I had three, over time - but I can't remember the exact reasons for doing them - it was a long time ago! I also had a full body scan... I had so many checks and things that it's all a bit of a blur, now. :)

  • Nothing showed up?

  • Nothing. Just a touch of arthritis on my right hip. I don't know if I was pleased or disappointed. lol

  • At least you knew there was nothing drastically wrong, and that in itself is reassuring. Ruling out "nasty" conditions is always a positive. So your problems must have been linked to you thyroid dysfunction....

  • Absolutely. Everything down to that. Just goes to show...

  • GG do you know if secondary adrenal insufficiency can cause the hashimatos or can the hashimatos hypothyroidism cause the secondary adrenal insufficiency-or neither is correct. ?? I was just curious if one causes the other?

  • I think it's being hypo - low T3 - that puts the strain on the adrenals. But, I'm not 100% certain.

  • Ok. Thanks

  • GG, you had a full body scan? I suppose this was in France as can't imagine it happening in the UK?

    Hope you're keeping well. x

  • Yup. It was like a photocopier for people! lol

  • Quite! 😀

  • Considering U have had renal TB/meningitis(14 years ago) should I ask for adrenals and pituarty to be checked. I am told meningitis can't touch the adrenals but can the pituarty!Would this account for ongoing thyroid symptoms or should I just be patient?

  • Well, I'm not sure that real TB/meningitis would touch the pituitary, either.

    However, it's always good to check cortisol, because being hypo can affect cortisol levels.

  • have a shunt fitted in my brain and believe after 5 months in hospital am sure I had real TB/meningitis Advice on pituarty from Neurosurgeon who fitted shunt. The pituarty on brain scan didnt show an enlargement but as I had a CT scan not a MRI, am wondering how clear it all is.

  • OK, well, I don't know anything about that.

  • Thank you!

  • You're welcome.

  • Seems GP is reluctant to give me Vit blood test until March 2018. VIT D DEFICIENT (& treated )in last test. .......03 May 2917 VIT B!2 & folate said to be normal at 358ng?L (180-799ng/L)but not according to Forum advice . Nothing on Ferratin.........how should I tackle this?

  • Are you in the United States or UK?

  • I am in UK(stilll not Sure if directed at me as just getting used to site )

  • Yes Diddums. I was asking you. Lol. I’m new too. I’m in the US so the way we have to jump through hoops and get medicine is a different set of hoops in the UK. If that makes sense. I’m sure it’s hard for you to understand the way I have to get approval here in the US with insurance companies as I’m not familiar with how the UK does things. Just didn’t want to try to offer non helpful advice. GreyGoose you are so right. Doctors are so stupid to be so smart. 😂😂😂 picking up my hydrocortisone today. Starting immediately and not taking the prednisone.

  • :o) DOH! Understand now and thanks for contact......appreciate your time! :o)

  • By the way good luck diddums at the doctors office.

  • Thank you!

  • Tackle the low B12? 1000 mcg sublingual methylcobalamin (B12) daily. Plus a B complex to keep the Bs balanced.

    Your doctor says it's 'normal' because it's in what is laughingly called 'the normal range'. But, that's all he means. It's in-range. He has no idea how truly normal that is, because he knows nothing about nutrition. But, we know that anything under 500 can lead to irreparable neurological damage.

    I cannot imagine why he won't test your ferritin until March 2018. Something to do with his budget for testing, perhaps?

  • Thanks again...........am seeing a private endo (recommended) tomorrow and GP next Mon,My sister is coming along to GP as my advocate (I will mention ferratin then)

  • Good idea. :)

  • Thanks again!

  • You're welcome. :)

  • Have you also optimised vitamin levels? Nothing might work very well if vitamins are insufficient. As Greygoose says, it might take time to sort out.

  • I was vitamin D def. but that is better. I don’t know if anything else

  • I would definitely get a copy of all your test results so you can see what's going on. For example, what tests did your doctor do to establish adrenal insufficiency? Ok, I can see some of the results on the previous post but what about vitamin levels did the doctor test those too? What was the outcome?

  • They did the test in the hospital

    They took a blood sample then injected me w a drug that does what your pituitary gland is suppose to do, which is basically tell adrenals to make cortisol. They checked me at 30 min and another blood sample at 60 minutes.

    If cortisol level was below 18 you are considered adrenal insufficiency

    My number was 13

    Then a second test was done.

    That number was 5.4

    If it would have been high then they said I would have had primary adrenal insufficiency

    But it was only 5.4 which means my problems are secondary to something going on with the pituitary gland

    So the next step is MRI

    To check for tumor on the pituitary gland.

    If I tried to guess at spelling the names of the test I’m sure they would be wrong

    I will start getting the test name in writing.

    It’s all very confusing.

    Just want to feel better.

    I’m 47

    I have two teenagers

    I’m missing the last years of their childhood Because I feel so awful all the time.

  • Yes, I would ask for a copy of results as you go along as it will help you to understand what is happening, what has been tested and what evidence your treatement is based on. I know what you mean about missing your teenagers' last years of childhood, that was how it was for me too. I felt they got the raw end of the deal. I hope you are soon feeling better. It sounds like more tests to come but at least they're on your case now so you're moving forward. Hang onto that if you can. Light at the end of the tunnel. Go back to the doctor if you still don't feel well. They need to know your symptoms as they won't give you a shout so you have to keep turning up to them.

  • Thank you

  • Sorry to read your story and I hope life gets kinder

  • I hope life is kinder soon.

  • I was told I would have to wait until March 2018 for next Vit check BUT thankfully it has been brought forward to next month. Only ferritin level has 2010 as year it was checked and was raised at 358, but have mentioned ACTIVE and INACTIVE B12 as reason to question 'normal' range!

    BTW Thanks for your help!

  • Hydrocortisone or cortisone is the preferred medication for Primary or secondary adrenocortical insufficiency, according to this link :

    drugs.com/pro/prednisone.html

    so I'm surprised you were prescribed prednisone.

    According to this link you are on the absolute minimum dose possible for an adult with your condition, so perhaps it isn't surprising that you aren't feeling super-wonderful. Perhaps it is time to ask for a raise in dose?

    drugs.com/dosage/prednisone...

    Usual Adult Dose for Adrenocortical Insufficiency

    Dosing should be individualized based on disease and patient response:

    Initial dose: 5 to 60 mg orally per day

    Maintenance dose: Adjust or maintain initial dose until a satisfactory response is obtained; then, gradually in small decrements at appropriate intervals decrease to the lowest dose that maintains an adequate clinical response

    Comments:

    -Exogenous corticosteroids suppress adrenocorticoid activity the least when given at the time of maximal activity; consider time of maximal adrenal cortex activity (2 to 8 AM) when dosing.

    -The delayed-release tablets act similarly to the immediate-release tablets except for the timing of drug release; active drug is released from the delayed-release tablets approximately 4 to 6 hours after intake.

    -Alternate day therapy may be considered in patients requiring long-term treatment; it may be necessary to return to a full suppressive daily dose in the event of acute flare-ups.

    Uses: As an anti-inflammatory or immunosuppressive agent when corticosteroid therapy as appropriate, such as for the treatment of certain allergic states; nervous system, neoplastic, or renal conditions; endocrine, rheumatologic, or hematologic disorders; collagen, dermatologic, ophthalmic, respiratory, or gastrointestinal diseases; specific infectious diseases or conditions related to organ transplantation.

  • I’m very confused about hydrocortisone and prednisone

    My doctor said it’s the same thing.

    5mg of hydrocortisone is equal to 1mg of prednisone

    But I realize there are different ingredients

    He said if I give you hydrocortisone you must take it twice a day

    If I prescribe prednisone you take it once in the morning. I’m on 5mg of prednisone

  • I'm afraid I don't know anything useful about the benefits or disadvantages of one or the other. I can just pass on links that people can read for themselves.

    I'm pretty sure drugs.com is a well-known and reliable source of information.

    You'll have to do some reading. Or do you have a partner or family member who can be relied upon to do research for you?

  • Just me. 😔thanks. I will research

  • l am awaitiing tests and results for what l suspect is secondary Adrenal. Had wait 6 months for best Hospital Endo. Pituitary Foundation are bril on advice for this as adrenal probs come from pituitary and hypothalamus not working well. They told me l wd likely need ?Hydrocortisone- supplied by only one company. It cost 70p for month supply in 2008 then went up to £88/month later, and now Pharma company has been sold 2x. This could explain why they are trying other drugs first Suggest you speak to The Pituitary Foundation - excellent free helpline

  • I’m so confused by all the things I read, my doctors knowledge and then my family. Lord help me. My sister is an Ob/Gyn and thought I was faking

    Really??? I’m so dang disgusted and confused. I just want my life back. A life back. I don’t function. 😔

  • Could your sister attend tests/appointments with you?

  • Unfortunately she is always “busy “. We are not close physically or emotionally. I just stopped talking to her about it. Considering she is a doctor. She could be helpful. Unfortunately that has not been the case. I’m starting to feel more confident with this endocrinologist. He’s on the ball. So it’s going to get better. Thank you. I appreciate you. ❤️

  • Take Care! x

  • Hi Angela2121 - I also have the same adrenal insufficiency issue you are experiencing. My Dr put me on 10mg of hydrocortisone for the past six weeks and had me take another blood test before coming in to see him next week to see how it's improving (or not). It is improved but is still deficient. Hydrocortisone is the more usual treatment but apparently prednisolone has its benefits as an option as well, although it's usually used as a secondary option after using others meds first as it has quite a few negative side effects if taken long term. Take a look at this:

    csrf.net/doctors-answers/st...

    In any case, all this to say that you aren't the only one who won't have it solved quickly or easily (as seems to be the case for all these hormonal issues!) and to try not to worry too much. Just see your Dr (if you're happy with your current Dr) and allow him a chance to adjust the meds. If you're not happy with his approach, don't feel obliged to stick with him. Change Drs and move forward. Go for any follow up testing but try not to worry until you've given things a chance to be tweaked and then for your body to adjust. Hope this helps!

  • Thanks Chantal75. Just feeling really upset about things. Thanks

  • I totally understand. And it's true that you should be feeling some at least tiny improvement usually when taking any sort of cortisone. The fact that you still don't feel well probably does mean that the dose or type of med isn't sufficient for you. Did they actually do a blood test to follow up and see whether your levels have at least improved? I understand that levels and symptoms are two different things, but am curious as to whether they're doing any tests/measurements as well. Do you know when you get to have your scan? At least that'll answer all the remaining questions!!

  • I have only been on 5 mg of prednisone for 5 Days. The nurse called me on Friday to set scan up for next week. The doctor said the change is immediate. They were surprised I felt no different. That’s why I of course thought it would be immediate. So to answer your question

    I have not been on medication long enough to have follow up blood test.

  • Well at least they are taking things seriously and quickly moving things along. Maybe it's better than tests and adjusted doses and taking a bunch of time to see if other things work first. They are taking you seriously and moving things along - this is the good news :)

  • Very true. I have been living this way a long time. It took a while before endo would do the test. So I am happy about the swiftness in the last 2 weeks

  • Hello I was just reading about the use of progesterone to help treat adrenal insufficiency last night it was quite a long article and my attention is so bad I was unable to read all of it but read quite a bit. It was written by Dr. Lam and also has information from Dr. Lee

    I just tried to post the link but was on successful I will try again. I am suffering so much and I’m on able to get the tests necessary to confirm but have had severe panic anxiety since I was a teenager and I’m now 46 years old.

    I am actually going to walk to the health store today and buy some organic progesterone cream out of desperation. My cycle just started this morning so the timing is perfect.

    Hope this helps sorry if someone else already posted the link I am very unwell myself and just doing the best that I can.

    xx Jill

  • Hi Jill,

    Adrenal Fatigue and Adrenal Insufficiency are not the same thing. Angela's body is unable to produce sufficient cortisol under any circumstances.

    Progesterone is a sex hormone and may be helpful to people whose bodies can still produce cortisol, but it isn't an adequate replacement for someone who doesn't produce cortisol.

    Progesterone may help Angela in the future, but it won't be the most important thing for her now.

    Depending on the cause of Angela's cortisol problem there may be no possibility of recovery and she will be on cortisol substitutes for life.

  • Oh I see. I’m sorry for misunderstanding. I recently joined a group on Facebook and was told not to use the term ‘adrenal fatigue’ in the group, because adrenal insufficiency was the correct medical term for it.

    I’m confused much of the time and barely functioning.

    Between a friend of mine recently suggesting I try using progesterone, then seeing the article on it, and then Angela‘s post.. all within a few days I guess I was oversimplifying things.

    Thank you for correcting my mistake.

    🍁🍁🍁

  • People with adrenal fatigue can produce cortisol, although they may not produce very much. With help from the right nutrients and supplements, and treatment for low thyroid hormone if appropriate, their adrenal glands may be persuaded to work normally again.

    In adrenal insufficiency the adrenal glands don't function properly at all, and might never do again.

    Doctors only "believe in" adrenal insufficiency, they don't believe in adrenal fatigue. They only believe one of three things -

    1) the adrenal glands don't produce any cortisol, or

    2) the adrenal glands work normally, or

    3) the adrenal glands produce massively too much cortisol.

    Doctors don't believe in grey areas, and "adrenal fatigue" is a grey area.

  • humanbean thank you for explaining this! It’s very helpful information.

    I hope you get the help you need Angela. I’m following to see how you go🌷

  • Thank you The will of Jill.

    Yesterday was a bad day. I’m so ready to just give up. It’s like my life is already over. There is no more joy in anything. I’m tired and sick all the time. Maybe this week will be better. We can only hope.

  • Same here Angela 2121 but we can’t give up. Unfortunately progress is slow but I feel you are making some, as you have your diagnosis now, and that’s a starting point. Good for you that you made them do more tests.

  • drlam.com/blog/progesterone...

    Ok this time it worked. Here’s the link.

  • What a great article! Thank you for sharing that. Learned a lot. Shared it with a friend who I think will find it helpful.

  • I’m glad you liked the article 🙂

  • I’m sorry

    I know how hard it is to get the medical community to listen to you. I will look up the dr. And the article. Thank you. I’m 47.

  • The article is called progesterone cream and adrenal recovery. I posted the link above just a few minutes after I posted my first reply it is a very good article and I recommend reading it. I saved it to my phone and will read it again later. I went and bought some progesterone cream and applied it. 🐿

  • drugs.com/prednisone.html. I looked this up. It says predisone is an immunosuppressant and suppresses inflammation and it shouldn't be taken when there is, among other things, a thyroid problem.

    Having had adrenal fatigue, I found the only answer is to build up your immune system and deal with the inflammation with high dose good nutrients. It isn't a quick fix. Suppressing things doesn't mean the problem goes away.

    I use Sisel products, especially now something that has NAD in it, and would highly recommend them, but I would say at least look up natural ways to restore adrenals. Most diseases come from a deficiency of whatever nutrients and trace minerals your body has run out of.

  • Can you explain “trace minerals “ I’m completely lost with that. I am learning a lot. But that may Be key in helping me

  • Hi Angela

    We all know about the major minerals like calcium, zinc, etc but there are about 80 trace minerals that we used to get in our food, veg etc that are very difficult to get naturally and consistently today. We need very small amounts, but we need them every day. Even back in the 1930's the world health organisation said that these things were no longer in the soil. Crop after crop had been produced, and even then not enough minerals were being replaced. So the micro minerals weren't in our food. now fertilisers tend to be based only on NPK (nitrogen, phosphorous and potassium). Our body uses these micro minerals for specific things. It is always repairing itself, and if all the minerals are there it can make better quality new cells and things can work better. When we don't have them our body tries to cope but works less and less well as we run out of more as we get older.

    I use Sisel's SpectraMaxx. A mouthful a day. It is a fruity tasting liquid. The important thing whichever supplement is used, is that the body can absorb it, or else it just goes straight through.

    Hope this helps!

  • I’m looking up the brand and I found on the Internet but I don’t see the liquid form of just the trace minerals I do see other brands. Do you have a website u order from each month?

  • I have sent you a message and info video

  • Thanks Sedum

  • Prednisone is not the same thing as progesterone

  • have they tried you on hydrocortisone? i am tertiary adrenal insufficiency and i find hydrocortisone four times a day helpful.

    have you had a CT scan of your adrenal glands? mine were thin and atrophic.

    have you had a short synachen test? or a base line of your ACTH at 8am in a morning without taking your morning sterid dose?

  • Yes to the ATCH. They know it’s secondary from the blood results. I am set for an MRI to see if there is a tumor on the pituitary gland making it not function properly. I am definitely going to see if he will switch me to hydrocortisone. I suggested it and then got some push back. I need to explain that I feel hydrocortisone has the lesser of side effects even if I have to take more often. I don’t understand what trace minerals are. Is that a liquid form and all minerals are together? Is it lots of different minerals you take individually? Any help in this matter would be great. Thanks

  • have you been on long term steriods? like steriod inhalers or steriod creams?

    i take it you had low ACTH.

    have you been given an emergency injection kit?

    have the sick day rules been explained.

    addisons.org.uk has lots of information.

    ask me as many questions as you want I will answer what I can.

  • I have only been on treatment of adrenal insufficiency for one week. 5mg of prednisone per day. Just once early in AM.

    I feel no different.

    MRI is being set up.

    I have not been on steroids in the past.

    I don’t know what you mean

    Emergency kit?

    Sick day rules?

    I don’t understand

    I’m sorry. Can you explain?

    Btw they said I don’t have Addisons

  • secondary adrenal insufficiency is the same treatment as addisons. it is clear which ever doctor you saw is not very knowledgeable. you need to be referred to an endocrine unit and ask to see an endocrine nurse.

    I am not addisons either.

    Can you go to your GP and ask to go to an endocrine unit.

    The condition secondary adrenal insufficiency is fatal if not treated correctly. You must not stop the steriod no matter what. You must take the 5mg prednisolone every morning even if you cannot feel it working. If you get a fever of 37.5 or more you must double the dose until you are normal temp for one whole day. This is the sick day rules. If you start vomiting you must go to hospital ideally to the endocrine unit but otherwise a and e and say adrenal insufficiency steriod dependant. you will be given iv fluids and iv steriod until you have stopped vomiting.

    Quite a lot of people manage not to be given the correct information you must see a specialist! it is vital. ask me as many questions as you want and i will do my best to answer. i was diagnosed as secondary in 2015 and tertiary only last tuesday.

  • Did they scan your pituitary? What is Tertiary? What’s the difference? What test did they do to tell the difference? Is your treatment now different? Do you feel better after being on medication? Do you think I will ever feel good again or is this life long? I’m thinking if they find a tumor-it can be removed and then maybe pituitary will start to function normally

  • i have been on steriods for 30 years due to asthma, allergies and excema. I had some blood tests and they showed my adrenals and pituary are asleep through lack of use this is secondary. my hypothalamus is also asleep. when your hypothalamus is asleep it means you are tertiary adrenal insufficiency.

    If you have a tumor your pituary gland will be removed meaning like me you will need steriods for life. You would be a lot better on hydrocortisone. I am. prednisolone did not help

    me like it is not helping you. Life will contain more fatigue but other than that you can live normally about two years after diagnosis.

    It takes the body about two years to get used to the hydrocortisone and you will need to learn the sick day rules and the vomiting rules but other than that you can live a normal full life. Just expecth to go into hospital if you vomit.

  • I’m in the United States but I can ask for an endocrinologist specialist Planning to but was going ahead w MRI to see results then asking to be referred to specialist in a larger city. (Charlotte, North Carolina)

  • this is an american charity has some good information

    aiunited.org

  • Thanks

  • any more questions and i will try my best it is a scary condition in the beginning as there is so much to learn. it is also quite rare in uk.

  • Evidently it’s rare here too. Can they not just remove a tumor off pituitary gland assuming it’s not inside the gland itself? What are trace minerals? How do I get my hands on them ?

  • unfortunately they have to remove the whole gland - not sure why though. the gland is behind your nose. never heard of trace minerals sorry. try google.

  • Yes. I am scared. I don’t want to feel this horrible the rest of my life. I don’t want to live if I have to live like this 😔

  • Hi Julie Victoria.

    Could you PM me with the name of your specialist? I'm secondary/ tertiary TRH/ TSH deficient but also having ACTH problems too.

  • Hi Angela. 3 years ago my daughter had very low cortisol after a severe case of glandular fever lasting 3 months. She had extreme brain fog, fatigue, weight gain, cold extremities, low blood pressure, terrible digestion, puffy eyes etc etc.

    We put her on the Paleo Autoimmune diet and some vitamin and mineral supplements. She's also tried to lower her stress level which has been very important. Her health has gradually improved and she is now 90% recovered. I know that "adrenal fatigue" is not accepted in mainstream medicine, however it makes sense to me that her adrenal glands may have been exhausted after three months of pumping out large amounts of cortisol to calm the inflammation caused by her infection. As a consequence her immune system went haywire and she lost tolerance for many many foods etc.

    She has gradually been reintroducing foods and can now tolerate and enjoy most things apart from gluten. It might be worth you looking into the Paleo Autoimmune diet: thepaleomom.com/start-here/...

    I feel the main benefit is that this is an anti-inflammatory diet so by giving your body a break from fighting inflammation it can put its resources into recovering health.

  • Thank you. Going Gluten free was my next step. I just didn’t quite know where to start. Thank you.

  • This book comes highly recommended and would be a great place for you to start:

    amazon.com/Hashimotos-Proto...

  • I had adrenal gland failure in January although my Gps denied that my CFS was caused by adrenal fatigue .. and just kept putting up my thyroixde which gave me toxaemia as my adrenals couldn't convert the T4.. so I sought private advice and came off all NHS drugs and started taking Metavive for the thyroid and Adrenavive for the Adrenals - now feel fighting fit after 30 years of ill health .. go natural your body will appreciate it and repair itself .

  • Glad you are going natural per say. But I don’t know metavive and adrenavive are. If I have a tumor don’t know if I do , I don’t know that would be the solution

  • They are natural cattle

    ( bovine ) and pig ( porcine) hormones so work with the body helping the thyroid and adrenals repair themselves.. as they repair then all the other parts of the body which have become dysfunctional due to hormone insufficency start to repair to.. So theoretically they should help reduce any tumour .. but it would also be based on your belief that you can heal your body by positive thought.. All the time I relied on GPs to dictate my health path with synthetic drugs my health problems never improved.. once I took charge of my own health path I started to heal.. It depends on the individual whether it would be the solution .

  • Where do i get these items. I have been trying to get help for over 3 years. So I more than realize how blind GP are to it all. I’m in the United States can you just buy that

  • Hello, this is a very interesting post and I would be grateful for any more information. I have had Hashimotos for 16 year, I’m 46. It was only diagnosed last year. I have never felt well since my diagnosis and I saw the late Dr Skinner 6 years ago and started t3. I still never felt very well. 17 months ago I fell and sustained a concussion. I became very unwell and 6 months after I saw an Endo as my tsh was off the charts at 74. He did lots of tests as I was dizzy and felt so I’ll. I ended up on MAU having the short synathcen test which showed low acth. I had an MRI which showed no tumor. My Endo was only ever concerned about my t3 level being slightly over the level they have. I asked if I had Hypopituitarism or Addisons to which he said interesting question and couldn’t tell me. He said the tests I would need aren’t available in the Nhs. He said I’ll be on steroids for life. He hasn’t mentioned sick day rules, an emergency injection kit or a cat on my adrenals. I don’t think he’s actually that bothered as long as I take hydrocortisone. As I burst into tears when he said I’d bd taking steroids for life. I don’t know if my head injury contributed to this or my Hashimotos. I am suing the company where I fell and they have admitted liability. But I had to change solicitors as they were trying to get me to settle without my full injuries being taken into account. The Dr who wrote the Medical got it completely wrong and my new solicitor asked him to amend it. It has been a year since he’s been requested to do this, so I can’t have specific tests done yet at their cost and I can’t afford them. It’s so very stressful which doesn’t help a medical condition that stress affects.

  • This maybe irrelevant but.... I have secondary hypothyroidism due to a malfunctioning pituitary gland. Could this also be an issue on top of the secondary adrenal issues that you are having too? My adrenals verge on ok. I have the same test as you describe every 18 months or so to keep an eye on things. But I’m wondering if your thyroid is also affected by this? I fought a long tough battle to get the diagnosis of secondary hypothyroidism finally a few years back. Obviously testing I’ve now discovered doesn’t always show the true picture of what is truly going on. My bloods all say continually that I’m over medicated, but that isn’t the true story at all when proper investigation takes place. My endo is pretty ok’ish and we treat symptomaticly depending on how I feel and how everything else is functioning within the body too. This has been a god send for me. Since symptomatic treating I finally feel much better. I’d be lying if I said that I feel completely well, but I am so much better than I was when I was being treated according to blood results. Finally I have some kind of answer as to what the problem is. As well as feeling like I do have a little bit more control over things now too. I just wondered if your thyroid is also just not receiving the correct info being sent from the pituitary gland, and that this is also adding to how unwell you’re feeling...

  • I’m not really sure of anything. It’s possible that I’m now overmedicated with hashimatos because the doctor kept trying to make me feel better without a cortisol Test. I don’t have a clue if I have a good endo right now. Newly diagnosed and waiting on MRI to be done. I did take a second dose of 5 mg prednisone this afternoon. I took one this morning. Now my heart is racing but is that how it feels when cortisol starts kicking in. It’s not a horrible feeling, not great either. Another doctor said maybe your dose needs to go up. I don’t know what I’m doing. Just trying to feel better.

  • I just got off phone w doctor I’m trying to get hydrocortisone instead of the prednisone. They are setting up an MRI scan to check on the pituitary gland

  • Hi Angela

    I’ve read through this thread and there are lots of areas covered; I wasn’t sure where to put my ‘bit’...so here I guess 😄

    I have Addison’s diagnosis. I take hydrocortisone split through the day. The idea is to mimic the normal production of the adrenal glands

    (I’d ask for a day curve when your on a regular routine, gives an idea of how you’re doing. Also a baseline bone density scan so you can judge over the years and reassure yourself that you’re not over medicated)

    I remember feeling an initial boost from taking my medication, but it did take a few days, maybe a week

    I totally understand the missing out on life...yours, family, friends. Sending best wishes and hope you feel some improvement soon

  • Thanks for giving your information. I don’t have Addisons. They just changed my medicine from prednisone to hydrocortisone

    I’m hoping that it will be better long term. Still waiting on mri to be scheduled. Should be in a couple days. I’m ready to find out what is going on and what has caused these problems.

  • Hi everyone

    So here’s my update

    If anyone has these types of symptoms let me know. I have been on hydrocortisone 3 full weeks.

    I didn’t feel any better. The doctor told me to take a stress dose for three days. Yesterday was my first day. In the afternoon I felt like I needed oxygen. My breathing was off. I laid down and finally went to sleep for about an hour.

    I felt better as the evening went on.

    Then last night I couldn’t sleep whatsoever and I have this wired but tired feeling. I’m jerking because I have not slept. Has this ever happened to anyone. The stress dose also made my heart race but is that what’s suppose to happen? Let me know. Thanks to everyone on this forum. You guys are great.

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