Addisons and hashimatos

Any idea of proper dosing on helping w Addisons. I do not want the doctor to give me too much steroids and then that create another problem. I am 99% sure I have addisons (possible severe adrenal fatigue)

My 24 hour saliva test showed these results

8am- .012

Noon- .059

4pm- .010

Midnight -.010

This is not much cortisol output at all. When the doctor showed me the graph it was basically a flat line and was I. The dangerous zone basically.

I need help however I'm being faced w one doctor saying as we age we all get tired. I'm waking up tired. I could sleep 24 hours however some nights I have insomnia. At this point I just feel weak. I have not left my bedroom in over 4 days. I'm sick and becoming more sick. Why am I being faced with people that say you just have to push through life. My body is not producing cortisol and on top of that I have hashimatos. Being managed w 300 grains of Nature Throid

If anyone has suggestions I'm willing to listen and learn.

I have basically zero estrogen and testosterone. I'm in menopause. So I'm a hormonal mess. Does anyone think I need an MRI to look at adrenals or pituitary gland to figure out the actual cause of why I feel so so bad. My lower back hurts like on each side, my right shoulder is weak. Almost like there is something wrong w rotary cuff but now I believe it's just muscle weakness.

Any thoughts would be appreciated

Thanks

68 Replies

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  • I don't know anything about Addisons but very many thyroid patients have vitamin deficiencies, sometimes severe and I don't suppose adrenals will function well if this is the case. Have you looked into absorption problems as your levo dose I'd quite high. Could it be that you have coexisting coeliac disease or anaemia?

  • I don't know. I don't think I have anemia. Not sure what coleiac disease is. I will check. I'm on lots of vitamin B, vitamin c, 10,000 units a day of vitamin c as well as adaptagens Trying to give me some type of energy and heal the adrenals if only fatigued. I have a while before I can be seen by the doctor again. I know it takes time. I thought I would get better but I seem to be getting worse. I can't figure this out but intend to keep searching. There has got to be a dr. That can care enough to help me.

  • I have read that adsptogens lower cortisol. My daughter has had adrenal insufficiency and postpartum hypothyroidism confirmed by a doctor in London.

  • I can't even imagine taking 300 grains of Nature Throid. That would be 11 400 mcg T4 and 2 700 mcg T3. Surely that's not possible. It's the second time you've said it, but it can't be right. Do you have copies of your blood test results you can post?

    Have you had a synacthen test to confirm Addison's? I think it's really important to do that. You shouldn't start dosing to treat Addison's if it's actually adrenal insufficiency. I think an MRI scan would also be a good thing to do, so that they know exactly what they're dealing with. So many assumptions are made in endocrinology, without the right tests to back up the theory.

  • Maybe is 3 grains. Im so sorry. My bottle says 195.

    My tsh numbers are now in line at about 2.0.

  • I really think I have addisons. There is absolutely no way I can describe this as just fatigue. This is complete exhaustion and I have done nothing. I don't even want to eat.

  • But 'thinking' is not good enough, you need to know for sure because it changes the manner of your treatment. You can't mess around with adrenals, they're not nearly as forgiving as a thyroid. You need all the right tests.

    Have you had your vit D, vit B12, folate and ferritin tested?

  • Vitamin d was an 11 they checked vitamin b and it was low. I have not had the other test. I'm hoping to press for them on the next dr. Appointment. I called back and they are seeing me tues 2:00 pm eastern time. I will write those names of test down. That is if I make it till Tuesday. I'm almost ready for my husband to take me to the hospital. I know that you can not feel like pure death just from fatigue , but am I being dramatic. I want to be healthy. I'm 47 years old and have two teenagers. I feel like a 95 year old woman. 😌

  • Of course you want to be healthy. We all do. And that's why I'm asking these questions, to get to the bottom of things. Before you can get healthy, you have to find out what's wrong.

    You haven't actually said what your doctor is planning to do about your cortisol. You said you didn't want him to give you too much in the way of steroids, but you didn't say what he was planning to give you. Has he said?

    That's why I'm saying that you need to know if you actually have Addison's before starting treatment. If you do have Addison's then you will need HydroCortisone, small doses throughout the day. If you have adrenal insufficiency, you need HydroCortisone in the morning - just the morning, nothing after 1 pm or the adrenals will shut down. Do you see what I mean? You're right to worry that he will give you too much, but in order not to take too much, you need to know what's wrong with you.

  • The general practitioner would only say I think you have Addison's but would not make the diagnosis. She is sending me to the endocrinologist. I researched the internet and on this forum and saw that too much steroids would make it worse. So thank you for the amounts. You are right. I need to know what wrong but I have to wait to see the doctor before they will give me an official diagnosis. I tried my best to get them to see me sooner and they said they could not. I tried two different doctors. So I'm going Tuesday and definitely will be going in aggressive w wanting or basically needing answers. Not too aggressive because then some doctors get ticked off. Thank you grey goose for your concern. If I could only get a doctor to act like they cared that much. I have been saying to my current doctor "I believe there is something wrong w my adrenals" and I was just given the salava test recently. I thought I had Cushings. She said no I think you have addisons and I have to send you on to the endocrinologist for that. The reason she waited was she was trying to get my tsh t4 and t-3 under control. She said she had to do that before giving the salava test. So I have been waiting a long time on the dr. And trying to get back in on their schedules is insane. This week I'm at my worst and found this forum last night. I decided to post to see what other people thought. Why she waited to give me a cortisol test? I have no idea

  • I have no idea, either. But, one thing you have to understand is that the average doctor knows very little about thyroid. There was absolutely not reason for her to mess about with your levo dosage before testing the adrenals - in fact, that should have been done first. Hopefully, the endo will test for Addison's when you see him.

    Oh, and she hasn't sorted your levo dose out, yet, because you are still under-medicated.

  • Also as far as treatment goes , is it important as to why the adrenals are not functioning properly? Or is the treatment usually the same. I have read there are three types of Addison's and without further testing I have no idea which one it could be

  • I'm not an expert on Addison's. I had, and was treated for, adrenal fatigue, and it was my specialist that explained to me about the difference between treating Addison's and adrenal fatigue. I don't know about the different types, and I don't know about any treatment other than HydroCortisone, sorry.

  • Thank you. Yes the doctors direct quote I can't treat your adrenal problem or see if there is one until we get your hashimatos under control.

    She still wants me to come back October 14th to check on symptoms

    And then she said she would refer me. I went ahead and made the appointment w endocrinologist

    They called me back. I go Monday now at 3:15 pm eastern. I thought that was pretty good. My insurance does not say I need a referral

    Thanks for your help. I will let you know what happens. 🙏🏻

  • Yes, do let us know! I shall be keeping my fingers crossed for you!!! x

  • Greygoose that is not correct about needing Hydrocortisone only in the morning if you have adrenal insufficiency, that shows a lack of understanding of the condition! Addison's is primary adrenal insufficiency, other causes are secondary adrenal insufficiency. There are various causes for adrenal insufficiency, usually because of Cushing's disease or syndrome, caused by a tumour either in pituitary gland or adrenal gland. I have adrenal insufficiency due to this & need to take my Hydrocortisone throughout the day, i I don't I am likely to go into adrenal crisis, collapse & die if not treated quickly enough.

  • I think it is a terminology problem.

    Patients talk about adrenal fatigue when their adrenals do work but are producing very low levels of cortisol. Recovery is possible weith the right treatment.

    Doctors don't think adrenal fatigue exists. As far as they are concerned, adrenals are capable of producing cortisol or they are not. There are no grey areas.

    Some people treat adrenal fatigue with HC just in the morning when the demand for cortisol is at its greatest.

    Adrenal insufficiency = Addison's, which is when the adrenals have failed.

    The above is my understanding anyway. I could be wrong.

  • It's slightly more complicated than that. For me my adrenals are fine but my pituitary doesn't produce enough ACTH to stimulate the adrenal glands to produce cortisol which is then called secondary adrenal insufficiency. This was due to having surgery to remove a tumour from my pituitary gland. For those that have had a tumour in their adrenal gland (usually in just one) that affected adrenal gland doesn't produce cortisol so they will also need to take Hydrocortisone as their other adrenal gland won't be making enough. In both situations this may improve if & when the pituitary or the adrenal gland "waked up".

  • Exactly, that is why I'm saying that the OP needs the tests to find out exactly what is wrong with her.

    As HB says, the terminology is difficult. If you say 'adrenal fatigue' you get a slew of people saying you shouldn't call it that, because doctors don't believe it exists, you should call it 'adrenal insufficiency'. So, this time, I called it 'adrenal insufficiency', and now you're telling me i shouldn't call it that. It's very difficult to know what to call it.

    My opinion is that adrenal fatigue does exist, I had it, I was diagnosed with it by one of France's top doctors. And, as I said, he explained to me that in my case, I should not take HC all day, just in the morning. Just to give the adrenals a helping hand at their busiest time. I did not have Addison's, nor an adrenal tumour, but my adrenals weren't making enough cortisol. After a couple of years, I was able to come off the HC with not problems, and now my adrenals are fine.

    So, my point is, the OP needs to know why her adrenals aren't producing cortisol, which is what I said to her. The rest is rather by the way. :)

  • its all quite educational what you are all posting as its helping me.I was yelled at by an endocrinologist this week in central Scotland for having done salivary cortisol tests privately which showed phase 2 adrenal fatigue,the short synachithin done by general medic normal.The person who posted this first question needs short synachithin.but I also understand TB can cause adrenal problems as they are posting eastern time that needs excluded too.

  • I hope you yelled back at him! He's not supposed to shout at his patients, it's most unprofessional. You wouldn't get a bank manager or a car mechanic shouting at his customer, the customer would never come back. What makes an endo think he has special privileges? It makes me sick.

    So, is he going to do anything about your adrenal fatigue?

    The short synachithin test would came back normal, because it's not designed to show adrenal fatigue. :)

  • no.he is doing nothing.I was in another city,had graves,initially missed u till I had angina,treated with carbimazole,knocked my lymphocytes and neutophils to permanent neutopenia.wasnt taken off it when that happened.several years later developed hashimotos subclinical hypothyroidism been on levo 3 years blood tests ok but no improvement.very puffy face so gp did morning cortisol which was normal but lower level.then general physician did short synachithin which ok but referred me to endocrine.no I did not yell back but put him in the picture as to how poor and outdated his medical care is.my hormones systems total mess as with many on this forum.surgical menopause age 38 due ti endometriosis.no replacement possible.overtreated prior to that with goserilin.I do not seem to do well with any synthetic hormones.hypothyroidism

  • Oh dear, how do they manage to get it all so wrong! That's why they shout, you're living proof that they're not the genii they believe themselves to be!

    So, are you looking after your adrenals yourself? Plenty of vit C and B vits and protein early morning. Not forgetting the salt, of course.

  • Thanks,I will do that.good to have some help.nany thanks

  • You're welcome. :)

  • Hi,

    I am bit of an expert in Addison's Disease as 3 of have it in this house. Plus my father has Secondary Addison's.

    GP's & Endo's are remarkably poor at understanding their own blood tests re Addison's.

    What was your early morning cortisol level - you said it was at the low end of normal ?

    Also what was the result of Synacthen test ? Start level plus the other results related to same test ?

    Do you crave salt or salty food or foods with hidden salt i.e. cheese , pickles , olives etc.

  • I have the salivary tests.The printout of others not available to me.The Gp thought I had Cushing's as face blown up.so did morning cortisol.low end of normal.The short synachthin I responded to up to 600.Yes I crave olives,peanuts,cheese but I dont add much salt in cooking.I will try to find some results and post.thankyou and sorry to have seemed to hijack someone else's post very rude not meant and someone I hope getting med care as very ill.will try ti post separately.

  • Hi,

    Yes find out what Blood Cortisol was from Gp was please. NB if you were stressed at the time of the test in any way then you will have spiked your own cortisol level - so GP will think you are not in danger - this is a major issue with Addison's Diagnosis.

    Also how long ago was this ? Addison's Disease takes a while to progress to full failure.

    Do you know what baseline i.e. the first blood draw was of cortisol before they injected you ? of the Synacthen Test was … & Again how long ago was this test done ?

    Salt craving is a warning that you may be heading towards addison's .

    Do you have any tanning ? i.e. skin looking grubby or being tanned when you haven't been in the sun ? NB however not everyone gets the tanning.

    If you start another post please tag me as I'm not on here often.

  • thankyou.new brown spots on upper lip and never had freckles there in 54 years.no tanning elsewhere.will find results and post.maby thanks

  • Exactly, HB, I was going to say the same thing. :)

  • PaulineS you are correct, when taking hydrocortisone the usual amount prescribed is 10mcg in the morning to get you "going" especially if you are like me or Angela 2121 virtually flat-lining. Lunch time 5mcg and around 5pm 5mcg. I became so ill I made an appointment to see a GP - after weeks and weeks of the dreaded blood tests "all within normal range" and the only thing offered was anti-depressants (yes another Dr inferring it is all in the mind) I decided to see a doctor privately who had a special interest in Addison's Disease. .

    It was suggested I have a saliva test done. When the results of my cortisol levels came back I was told by my private doctor that because I had clearly been very very ill forsuch a long time and with the results of the cortisol test showing why, that I had Addison's Disease and that I must not waste any time in getting the right medication as the consequences were life threatening. I was given information where I could obtain either Hydrocortisone or Prednisolon as I knew there was no chance that I would ever get a prescription for the correct steroids.

    I bought Prednisolon which unlike hydrocortisone has a half life, I took 5mg morning 2.5 lunch time and 2.5 at 5:00 pm. I had a miracle recovery, (I did put on some weight).

    By a fluke a second GP discovered I was taking steroids that were not prescribed by them. I expected to be duly berated but was asked how I was and when informed about my recovery I was told that they would have no problem is prescribing Hydrocortisone BUT I must first see an Endocrinologist.

    Big Big mistake, as I can honestly say this was one of the most harrowing experiences I have every had - I sobbed all the way through the appointment. He was furious when I handed him my private saliva test results, saying "this is not the first time I have seen results from this company, and that British Endocrinology does not accept Saliva Tests - who told you to do this". I was crying so hard he got up and handed me a paper towel. Quite clearly we women (as it is mainly women who suffer terrible hormonal problems) have no right to try and make themselves well, and have no right to any opinion, or obtain information about their condition. This man was devoid of any thought for a patient's needs or feelings. He also said I only need to take one tablet a day, (I later found out he specialised in Diabetes. I was told that I should come off the steroids straight away and have the Synacthen Test done. I told him no as a Synacthen Test can cause an anaphylactic shock, and I tried to explain that I have terrible reactions to almost every procedure I have undergone. He also inferred that everything could all be in my mind.

    While attending this appointment they took more bloods even though he was told I was taking Prednisolon, and 100mcg Thyroxine (after prescribing for l4 years my GPs withrew this medication) so I had to purchase that as well. I was also injecting B12.

    Five months after my appointment with him, he wrote to my GP stating I did not have Addison's Disease, nor was I Hypothryroid and that I shouldn't be taking B12 injections, even though I had explained in the 70s I had undergone a vagotomy and a jedjunostomy (he didn't know what it was) I had to explain to him that it was probably the lack of intrinsic factor that I needed it, but in any case it was a water soluble vitamin.

    Since then I have had to carefully wean myself off Prednisolon as I can no longer find a trustworthy on-line pharmacy that sells it without a prescription, and yes I am back to square one and am so frightened and very very ill.

    The power that Endocrinologists have is terrifying as since his letter to my GP all communications from them have been ignored. Talk about "Do No Harm!"

  • he should be reported to the GMC.The behaviour is atrocious.There is an entity called patient autonomy which most doctors seem never to have heard of.You clearly at some stage had it in some form of balance.could you revisit private doc?

  • Wrong. Addisons is primary adrenal insufficiency and secondary adrenal insufficiency is from pituitary suppression. Both are diagnosed through the ACTH stimulation test and with primary and secondary the replacement of steroid is two or three times dosing a day. You are getting confused with adrenal fatigue which is not recognised as a medical condition. Proper testing needs to be done before anyone starts taking steroids as if you don't need them you will be shutting down your own production. Please remember that addisons and adrenal INSUFFICIENCY are life threatening, life changing chronic illnesses. Not to be confused with adrenal FATiGUE.

  • Well, I wasn't confused until you chipped in! Are you answering me? What did I get wrong, exactly, because you seem to just be saying what I said, only with less charm.

    A lot of people use 'adrenal fatigue' and 'adrenal insufficiency' interchangeably, as I said. But, I think we've covered all bases, by now, don't you?

    Bottom line is - as I said - the OP needs to know exactly what is wrong with her before she starts any treatment.

  • As someone else also pointed out after such misleading replies, adrenal insufficiency and adrenal fatigue are not the same and they most certainly are not interchangeable.

    I have come close to dying several times over the last 5 years from secondary adrenal insufficiency and its important that people realise the difference between fatigue and a medically proven diagnosed condition. I couldn't care less whether or not that was 'charming' enough for you. I'm too busy trying to stay alive!

  • I don't believe I did give misleading replies. I don't think you've read all my replies on here. Which you should do before making accusations like that. I explained it all very carefully.

    I'm sorry you've got problems, but so have we all on here. We don't have to be nasty to each other, on top.

  • Thankyou for all your posts.it stops people like me just giving up an accepting a level of illness that is grim but not life threatening.I have a sick partner dependent on me staying well and 2 elderly parents too so you help 4 folk.The adrenal insufficiency is probable a bit like the subclinical hypothyroidism.in another decade it will be treated.

  • Thank you, melville, that's very kind. :) x

  • incorrect.you wont exclude all causes of secondary adrenal failure insufficiency nor fatigue by doing a short synachithin test.some doctors do recognise adrenal fatigue just read this forum.The failure of recognition by others is ignorance.my early morning fasting low but normal test was deemed to be done too late by the foul endocrinologist.however he went on to totally contradict himself.I have increasingly read this forum seeing why people are self medicating.

  • Many of usfind that Synacthen test absolutely useless. Plus i dont want chemicals pumped into me

  • Well, it is useless if you don't have Addison's. It's a test to rule it out. How else are you going to know if you have Addison's? I don't understand your comment.

  • Adrenal Fatigue is something people may be able to recover from with the correct treatment, and taking steroids (hydrocortisone - HC) to treat it should be kept to the minimum and should be taken in the morning only. It may be possible to come off HC eventually, if treatment works.

    Addison's is Adrenal Failure and is something that can't be fixed as far as I know, and taking steroids throughout the day for life is essential. People can't live without cortisol. If you were to be put under stress when you effectively had zero cortisol, you could go into crisis and die. Addisonian Crisis is a medical emergency.

    en.wikipedia.org/wiki/Adren...

    Your doctor sounds like she doesn't know what she is doing. I think it is far more important to investigate and treat your adrenals first and then fix the thyroid later than do things the other way around. Low thyroid is unlikely to kill you very quickly - it could take years. But low cortisol might.

    .

    By the way, saying your Vitamin D was 11 is misleading. We would really need to know the units of measurement and the reference range for the number to be meaningful. A result of 11 in the US doesn't mean the same as a result of 11 in the UK.

    The optimal result for vitamin D in the US is often quoted as being 40 - 60 ng/mL.

    The same level in the UK is usually given as 100 - 150 nmol/L.

    And both results mean exactly the same thing.

    If you put in your result of 11 (assuming it is ng/mL) and your weight in pounds on this page :

    grassrootshealth.net/?post_...

    it will tell you how much you should supplement by to raise your level to optimal in a reasonable length of time.

    There is also a calculator to convert from ng/mL to nmol/L and back again here :

    grassrootshealth.net/?post_...

    .

    Please note I have no medical training.

  • Thank you.

    Dr said minimum low was 50 and I'm at 11. So def vitamin D deficiency. They have said possible osteoporosis

    I have been diagnosed w osteopenia in the past. I was given prescriptions and then taken off but I assume my numbers went back down. I will check out the calculator to see if I'm taking enough vitamin D.

    Thank you for your help.

    I'm aware this can be deadly if I go into crisis.

    I have been checking my own blood pressure today

    It is low. It always is. And it's lower than normal and I have not passed out. My husband will be home from work soon. So he will definitely be w me until I can get to the doctor

    The Emergency Room will only see me and tell me to goto endocrinologist. So no need in doing that unless my blood pressure drops way low.

    Thanks again

  • Good luck. :)

  • Angela, if you start vomiting and or diarrhea you must go to the emergency room straightaway. You must learn the symptoms of an adrenal crisis, and make sure your husband and children know the symptoms too. It may be up to your husband to explain to medical staff what is wrong with you. Do you have any change in the pigment of your skin, like darker knees, elbows or generally look like you have a sun tan which isn't normal for you?

  • Angela, you don't give the range for the measurements shown, was this a private test rather than an NHS one as the usual ones for the NHS are in nmol/s & a higher range?

    If your levels are really that low then your GP should get you an emergency referral to an Endo for you or even send you to A&E, or even started you on steroids.

    With having Secondary Adrenal Insufficiency I have to be registered with my local ambulance service in case of an emergency - the key wording to them to respond is "adrenal insufficiency" rather than Addison's.

    I have secondary adrenal insufficiency due to Cushing's from a tumour in my pituitary gland. Since surgery I have needed to be on Hydrocortisone, I take it 5 times through out the day, the dose is a therapeutic dose, replacing what my body doesn't produce. if you have AI then this will be the same for you. have a look at the Addison's website, addisons.org.uk for more information. If you are on Facebook, then join the UK Addisons info & support group for lots of information. Good luck, I hope you get sorted soon.

  • Hi Angela

    I have Addison's, primary, autoimmune variety

    I agree with above, you need to have a diagnosis before medication; but not sure why the test is not being done asap

    I'm not medically trained but would like to give some advice to get you through till Tuesday

    Keep hydrated but don't drown yourself as you don't want to wash out your salts

    If you fancy salty food, go for it

    If you have sickness/diarrhoea, get emergency help

    Rest, don't stress (i know...impossible)

    In hindsight my thyroid situation was not great when I was diagnosed with Addison's, it didn't stop or defer my treatment for Addison's

    Sending best wishes

    Let us know how you go

  • I would just like to say thank you to all of you for your concern. The reason I reached out is because I feel like death. Thank you for all the advice that each one of you have offered. My appointment is Monday with an endocrinologist that was willing to see me ASAP. So they bumped it up to Monday at 3:15 pm Eastern time. So I am going in with a lot more questions and thats because all of you. I definitely will be staying hydrated. I do not have much of an appetite and I'm staying in bed. I am also watching my blood pressure because I realize if it dips too low it's an emergency situation.

    I will let you know how it goes Monday. Resting in bed for the weekend. 🤗❤️🙏🏻

  • Hello Angela,

    I have Hashimoto since 1983 and I have diagnosis of Primary Adrenalin Insufficiency since 2015. I am 47 now and live in the UK.

    As others said already, it is important to get checked your blood test for Cortisol, you need 8 am Cortisol test first and you need short Synacthen test and check ACTH levels to find out whether you have Adrrnalin Insufficiency and whether it is primary or secondary.

    It is really, really essential to get tested Cortisol levels. I say that because I nearly died in 2015 when doctors did not test my Cortisol and did not notice I had ALL the symptoms of Addisons (I had extreme weight loss, my skin turn dark brown, I had brown patched - pigmentation on skin, black gums, I had postural hypotension - my blood preasure dropped when standing up from sitting down, I had extreme nausea, no apetite, I was vomitting every morning, I was struggling to drink, I was extremely dizzy.... But my doctors thought it was my Hashimoto and increased my Hashimotos medication - Levothyroxine. Now I know they coukd,kill me that way because increasing thyroid medication without treating Addisons can actually make Addisons worse and cause Addisons crisis that leads to death.

    Angela, you reay need to get your blood test done as soon as possible, and do not worry about steroids. If you have Addisons Primary Adrenalin Insuffuciency then you will need Hydrocortisone to keep you alive, it will be physiological replacement of Cortisol that adrenalin glands cannot make. And as for dosing, it is different for different people, my absorption is very fast so I need to take Hydrocortisone 5 times a day in small doses.

    I found the most helpful addisons.org.uk

    I will find also leaflet for GP about diagnosing Addisons in the UK for you

  • Here is information about symptoms and diagnosis

    addisons.org.uk/articles.ht...

    and here is the guide for GP about how to diagnose Addisons

    addisons.org.uk/forum/files...

    As for me, it was my Mum, retired GP who saved my life, when we visited her for holiday and I looked like I was going to die, she took me to hospital, told doctors she suspected Addison and doctors did tests, diagnosed Addisons, started treatment and saved my life.

    Best wishes

    Jana

  • And this is website with information about Addisons in US

    nadf.us

    and here is some more helpful information

    clevelandclinicmeded.com/me...

  • hello Angela,I how they can get on and sort things out.The short synachthin test needs to be done in a hospital especially as you are running very low.Also if you are in an area where TB is prevelant that needs to be excluded too.best if luck

  • I’m in the United States so I think I’m ok as far as TB. Thank you for the information above. The soonest I can be seen is Monday by the endocrinologist. I am 47 as well and they also increased my doses of Nature throid. I have a feeling that when an ACTH Test is done on Monday it will give a better snap shot of what they are dealing with. I knew when I did the saliva test, those results are in the first post, the adrenals is the problem along w hashimatos. I will updat everyone on results. Hope to get synacthen Test as well.

    Thank you

  • Your cortisol levels deifnately indicate sever adrenal fatigue/Addison's. Have you showed your GP your results? In my opinion you need your GP to review your results asap. They may ask for a morning blood cortisol level (this can be unreliable as it detects bound and unbound cortisol). From there I would imagine they would speak with Endocrinology and a synacthen test be performed to asses adrenal function (again this test has its flaws but with your levels I would think it would be highly likely it would show up some level of adrenal insufficiency). My experience in the NHS is that they only treat the two extreme sides of adrenal insufficiency - Addison's and Cushings. So u may need to be prepared for that.

    Can I ask are you on any medication which would affect your cortisol production? What was ur sleeping pattern like before the saliva test?

    There are options other than steroids, but if ur levels are a true reflection of what is going on with your adrenal glands then I'm afraid this is the only route.

    There is a yahoo group forum from which I have found to be a great support and body of knowledge to me and many others. Let me know if you would be interested and I will find the link for you.

    It's horrible feeling the way you are. I can completely relate. Take care. x

  • Ps please do not start dosing with steroids until u have some form of diagnosis as u will never be able to get a true reflection of how your adrenals are functioning prior to you starting.

  • The general practitioner had me do the saliva tests. It was a test she ordered. I waited on the results and to be seen again. And even. Tho they were basically flat she said I’m not quite sure. It was going to be another month and then she was going to have a blood test taken. She sold me lots of vitamins and supplements

    Adaptagens B vitamins D vitamins c vitamins. I have become very sick this week. I emailed her and ask if I could take the blood test early.

    She got offended. I went ahead and scheduled an appointment with an endocrinologist for Monday at 3:15 pm eastern. I’m just resting and trying to make it till Monday.

    I have never done any test on my own. She told me she could not help low adrenals and that I would have to go to endocrinologist

    I don’t understand why she didn’t send me when she saw the 24 hour saliva test.

    Anyway sleep has not been good in a very long time. This did not happen overnight. This is something I have been dealing with for 3-4 years. It’s just that this week I’m so weak I have not been able to get out of bed.

    So I’m hoping for help on Monday.

  • Apologies for having to repeat yourself I didn't properly read all comments. I'm still recovering and my brain fog hasn't lifted. It's horrendous isn't it. The lack of sleep just adds to that feeling of utter exhaustion. You literally can't lift your head of the pillow somedays.

    You were quite right to do what you did and get your tests moved forward. I hope that when these confirm your diagnosis that things will go a lot smoother for you.

    What I believe and the knowledge I have picked up along the way, your adrenal function greatly affects how your thyroid functions and vice versa, years of a poorly treated thyroid/undiagnosed thyroid condition can put extra strain on the adrenals causing insufficiency. Before you can properly and effectively treat your thyroid your adrenal issues need to be resolved. As like previous members have mentioned Thyroid medication can be very toxic to the kidneys. If you look on the contraindications for Levothyroxine for example it states 'must not me administered to patients with adrenal insufficiency'.

    Due to your cortisol levels being so incredibly low during the day, come night time your body starts running on adrenaline, causing severe insomnia. At times agitation, sweats, palpitations etc.

    Again like others have mentioned it is important to stay hydrated but not too much to wash out important electrolytes. High potassium and low sodium is often a good indicator of Addison's.

    Tests you can do at home is - lying and standing BP's, if there is a postural drop (lowers on standing) this can be another indicator for Addison's.

    If you sit down for about ten minutes then stand up very quickly. If you notice a sharp increase in your heart rate - again this can me another indicator.

    I will place the link for the adrenal support yahoo group down below for you. Honestly the main women who run it and incredibly knowledgeable they will help you a great deal. Even after diagnosis. There webpage is also very informative. The group is based in the U.S. x

  • *thyroid medication can be extremely toxic to the adrenals not he kidneys! (Sorry brain fog strikes again!)

  • Thanks so much. That link will be appreciated

  • rt3-adrenals.org/index.html

    At the top left of the page is the link to the yahoo group. You will need to request to join and explain the reasons for wanting to join the group.

    They are on moderator break till the 7th of October unfortunately but you can use their website as a reasource in the meantime as it is full of information which will benefit you and maybe guide you for when you see the doctor. Take someone with you to help fight your corner as I know it's difficult to put up a fight when your a feeling so so unwell.

    Not a problem. Anything to help. Please let me know how you get on.

    Take care x

  • The muscle weakness might be due to another autoimmune disease such as arthritis.

    There are 200 different types of arthritis but some present with back ache. If not then may be

    it is your kidneys. If it is arthritis some types respond to cutting down on red meat including beef lamb and bacon. If you are producing too much uric acid, you can get gout, which affects your kidneys and gives rise to aches and pains.

    If you have any type of infection such as a chest urinary tract, or kidney this will give rise to pain

    in the back. Look for tenderness round elbow joints and round hip joints as well as back.

    May be a water test is indicated to check for infection as exhaustion takes hold with urinary tract

    kidney infections. The odd thing about infections is that you may get a swelling in another region of the body. I had a chest infection for over six weeks thinking nature would cure all but my right leg was swollen. I was taken aback to find that the leg swelling was due to a chest infection.

    Muscle pain and fatigue can also be associated with diabetes - so a urinary test would reveal

    sugar in the urine infection or high uric acid. Hope you can get these tests done on the spot to rule out any other causes for your ill health.

  • Ok i need to ask a very serious question

    Has anyone ever known it to be true that 24 hour saliva test to be an unreliable test for cortisol output or production. My sister who is an ob/gyn just told me in a text that 24 hour saliva test are unreliable and do not really tell you anything. If you read some of my other comments you will know my sister has not been very supportive. She said adrenals is all alternative medicine. So I’m curious has anyone on this forum ever been told that or believe that to be true?

    Thanks

    Still waiting patiently until my endocrinologist appointment on Monday.

  • See what Prof Hindmarsh has to say on his site re Saliva testing - He is world expert in Adrenal Issues. Quote below. Link to his site below quote.

    He is my son's endo

    Can you use saliva samples to do a 24 hour profile?

    We do not use the cortisol measurements in saliva for several reasons; the main being that the cortisol measured in saliva is not the cortisol level that is going to the organs, which is the measurement we are interested in. It is rather like a ‘by product’ and it can also be influenced by other factors, such as caffeine from coffee, tea or certain sodas and fruit juices.

    cahisus.co.uk/pdf/24%20HOUR...

    cahisus.co.uk/Addisons.htm

  • Just wanted everyone to know I just got back from endocrinologist and I have to goto hospital for more tests. The endo doesn’t think its Addisons however did feel that if the test came back lower than 18 then I’m considered adrenal insufficiency and he would be giving me medication. He was nice and not arrogant. I told him that I was just looking for some logical answers to why I feel so bad. They are suppose to inject me with something then wait and perform the test. I’m sorry I can’t remember the long name of the test. Will update when results are in.

  • I have a crazy question. The cream hydrocortisone? Is that the same hydrocortisone they give for adrenal insufficiency ? If you rub that on your wrist enough is it the same. ?? Lol. I know I’m being silly. I’m just curious if anyone knows. Thanks

  • I just wanted to let everyone know. I just got off the phone with doctor. I do have adrenal insufficiency and will be taking hydrocortisone. Daily. I am still waiting on test to find out if it’s primary or secondary. I know this sounds crazy. Praise God I have a diagnosis. I was so afraid the results were not going to show anything. I’m not lazy. It’s not in my head. Yes I’m finally diagnosed. I don’t have Addisons. Normal level would have been anything of 18 and above. Mine was 13. That’s the level of cortisol after they injected medicine to tell my pituitary gland to tell my adrenals to produce cortisol. I’m so happy to have some answers. Thanks for your support that last few weeks. ❤️

  • Let us know how you feeling after hydrocortisone.

  • Doing well on hydrocortisone after 14 Days. I feel ok. Not 100 percent but definitely better. MRI set for November 2nd to see if there is something putting pressure on pituitary gland

    But medicine is helping me.

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