• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. R

    Adrenal Insufficiency Testing?

    Hi Roxie, I think repeating ACTH and Cortisol is a good idea, there is always a chance of a lab error with the ACTH test. The ACTH test is the important one, failing it shows that the problem is caused by something wrong at the level of the pituitary or hypothalamus (secondary or tertiary AI)...
  2. R

    Adrenal Insufficiency Testing?

    Hi Ema re With respect, I think it is very important that we should not be giving non medical opinions, and only stick to what the experts say. Pituitary tumors can and do cause the underproduction of hormones including ACTH, growths in the brain can lead to an under production of ACTH...
  3. R

    Adrenal Insufficiency Testing?

    Hi Ema, RE Many cases of secondary AI are caused by things like pituitary tumours, only an MRI will show these, in which case surgery can be required, just providing hormone treatment for any of the forms of AI without finding the true cause can be very dangerous. The cause has to be...
  4. R

    Adrenal Insufficiency Testing?

    Hi Roxie, not sure where exactly you live, but my feeling is you need a endo who specialises in the pituitary. The Pituitary Network Association has a website here http://pituitary.org/ on these pages it has a list of pituitary specialists they recommend...
  5. R

    Adrenal Insufficiency Testing?

    Hi Roxie, if the advice in the decision tree was followed you would not have even had a ACTH stim test. It says if serum Cortisol is under 5, then order ACTH blood test, if ACTH is under 10, then Pituitary failure is likely so MRI/CT the pituitary. Your serum Cortisol was 2.1, so under 5, your...
  6. R

    Possible to be hypothyroid but have normal tests?

    Hi Roxie, I’m no expert on thyroid meds, but going by Dr Mirza’s recommendations, “In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH by 2 digits. This simple math will allow you to have a rough estimate of levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.”...
  7. R

    Adrenal Insufficiency Testing?

    Hi Roxie, sorry to hear you are going through this, I recommend getting a second opinion from a new endo as soon as possible! New doctors can frequently have very poor knowledge of certain issues. My understanding is that Base line ACTH should have been done, and the test should have been done...
  8. R

    Adrenal Insufficiency Testing?

    Hi Roxie, my understanding is that in healthy people Cortisol results will double with ACTH stim test, in primary AI the results are less than double, in secondary AI, which your initial blood tests indicated, results can more than double, this is because the adreanals are intact but have not...
  9. R

    Adrenal Insufficiency Testing?

    Hi Roxie, because your levels are so low I doubt you will have any trouble with an indeterminate ACTH stim tests. The medication is normally for life, this is nothing to worry about once the right dosage is achieved it is only replacing the adrenal hormones that would be there naturally. I know...
  10. R

    severely low hemoglobin, hematocrit and ferritin, no help from PCP

    Hi oh-nos RE . Have you been tested for adrenal Insufficiency with a ACTH stimulation test? Low Cortisol and Aldosterone means that it is very possible that you have Adrenal insufficiency, this is very serious, but very treatable if you have it, you need to see an Endocrinologist so they...
  11. R

    Mildly reduced cortisol, mildly increased ACTH

    Hi A.B., RE Many doctors do not understand these tests, they are not trained in them, Cortisol can still be in normal range but you can still have severe Addison’s To find out for shore if you have AI you need an ACTH stimulation test which you get from Endo’s. This involves being...
  12. R

    Adrenal Insufficiency Testing?

    Hi Roxie, RE Excellent news Roxie, take it easy till next wed and hopefully the endo will sort it all out for you quickly. All the best
  13. R

    Very high aldosterone level

    Hi Helen 1, re That’s good news, Aldosterone is an important test and failed results can indicate some serious problems, which need diagnosing quickly, hope your doc sorts it out for you soon! All the best
  14. R

    Adrenal Insufficiency Testing?

    Hi Roxie, re Cortisol AM serum 2.1 range 6-23 ACTH 7.0 range 9-52 Low ACTH and low Cortisol makes secondary or tertiary Adrenal Insufficiency very likely. Normal Aldosterone fits with Secondary AI. Keep pushing for Endo appointment and ACTH stim tests. Is it possible for the nurse...
  15. R

    Very high aldosterone level

    Hi Helen, re Have your doctors followed up on this result? high aldosterone can be caused by the diseases listed here http://en.diagnosispro.com/differential_diagnosis-for/aldosterone-serum-lab-increased/11843-154.html If it hasn't been followed up on, get a doctor who will find the cause of...
  16. R

    Adrenal Insufficiency Testing?

    Hi Roxie, 3.7 mcg/dl Cortisol is a seriously low result, your sleep patterns may have made the result a bit lower, but this result has to be investigated properly quickly!! AI is rare, most doctors are not very knowledgeable about it, I have even had one ask me what Addison’s is, so if your...
  17. R

    Adrenal Insufficiency Testing?

    Hi Roxie, sorry somehow didn’t see the tagged post a few days ago, things have been a bit hectic in my life, RE TSH - 4.758 FT3 - 2.9 (290) FT4 - 0.90 RT3 - 11.2 range 9-27 Cortisol (7AM) 3.7 Lithium <0.2 range 06-1.2 DHEA - 114.2 Just want to make sure, is the Cortisol result of 3.7 in the...
  18. R

    A great starting point for M.E. tests......

    Hi Sushi, this is not an ME site it is a ME/CFS site, ME is a neurological and muscular illness as described in the epidemics from which the name comes from, and as defined by the WHO. ME is not the fatigue based illness described by the CFS and ME/CFS criteria, CFS is just a collection of...
  19. R

    A great starting point for M.E. tests......

    Hi San Diego #1, sorry I haven’t received a PC from you, I will send you one and try to answer your questions. I agree most people don’t know that their doctor or dentists is bad until things go wrong. The problem with CFS is doctors can just say CFS patients don’t get cured, some treatments...
  20. R

    A great starting point for M.E. tests......

    Hi snowathlete, I would just like to point out that I have not mentioned any personal details from communication between us, and made it clear in my post that I would not, obviously I cannot mention on a public forum details of private communication, but I would suggest that you may like to re...
  21. R

    A great starting point for M.E. tests......

    Hi San Diego #1, I have had similar experiences with doctors some of them have been truly appalling, the key for me has been to learn that some doctors are very poor quality and to just sack them and get another one and to keep doing this until I found a good one. And to learn as much as I can...
  22. R

    A great starting point for M.E. tests......

    Hi all, in post 223 here http://forums.phoenixrising.me/index.php?threads/fatigue-is-not-a-disease-unger-responds-advocates-launch-petition.23688/page-12 I put a whole lot of information that people may find useful in finding the right diagnosis, most of this information has been covered in this...
  23. R

    A great starting point for M.E. tests......

    Hi Goodness to ME and San Diego, these are the new reference ranges mentioned by Dr Mirza TSH new reference range (0.3-2.5) About this Doctor Mirza says “1. True biological reference range of TSH should be 0.3-2.5. If TSH is > 2.5, especially when Thyroid Peroxidase titer is > 10, the...
  24. R

    A great starting point for M.E. tests......

    Hi Goodness to ME, yes that’s right I did write the article, I had posted Dr Mirza’s articles and some people seemed to have trouble understanding and believing them, so I put together links that explained in more detail what Dr Mirza was saying and tried the best I could to explain what he...
  25. R

    A great starting point for M.E. tests......

    Hi San Diego, re Great idea to forward the info to your doc, I hope they can organize testing for you soon, wonderful that your insurance company will pay for tests. Sorry to hear that you had such a bad time with a prominent CFIDS doctor, if they said you were in heart failure, did they send...
  26. R

    A great starting point for M.E. tests......

    Hi Sushi, RE I suggest you should research the tests and find out what they mean, and if the tests have been replicated and are valid science. I don’t have the time or energy to lay out all the research behind every single point I make, if people chose to not take a statement on face value...
  27. R

    A great starting point for M.E. tests......

    Hi San Diego, RE If this is the book you mean? http://www.amazon.com/Vitamin-Physiology-Molecular-Applications-Nutrition/product-reviews/160327300X the book is written by Dr Holick, the review is by Dr Mirza. There is a short article by Dr Mirza on the British medical journal site if you are...
  28. R

    A great starting point for M.E. tests......

    Hi Sushi, I’m certainly not saying that ME is not real, I’m saying CFS is not real, By ME I mean the 1969 WHO defined disease, the disease of the epidemics, but this is not CFS, it is a Neurological and muscular disease, with a known short incubation period. This incubation was found out because...
  29. R

    A great starting point for M.E. tests......

    Hi San Siego RE, There seems to be a misunderstanding here Dr Mirza has not written a book as far as I know and I’m not sure what you are referring to? Since I first wrote the article that Goodness to ME has reposted, the original links to Dr Mirza’s original articles in the British Medical...
  30. R

    A great starting point for M.E. tests......

    Hi Roxie, re Happy to help, I think most people here are at the end of their rope with their doctors, not many people seem to be getting good help, I’m sorry I haven’t done any research on Dr Lynchs views so I can’t really offer any advise at present. RE Does Mirza speculate on if the EBV...