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    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. clive powney

    CFS/ME and intracellular hypothyroidism

    TPO was < 10 range 0 - 35 TG WAS < 20 RANGE 0 - 40 Both well into the good areas of the range
  2. clive powney

    Daily Mail 20th March: CFS, thyroid hormones, PACE and the Lightning Process

    Hi hixxy. Have you tried running your thyroid panel results through the SPINA software? There are a few posts on the forum that may help you understand (and also help to evaluate the usefulness of the software)...
  3. clive powney

    CFS/ME and intracellular hypothyroidism

    is there any way we could get a whole load of people on here to run their numbers through this ? I suspect that the majority of people here would have had a thyroid panel done sometime recently. It is also interesting that it suggests that I need to take t3 or triac (optimally) and the on ly...
  4. clive powney

    CFS/ME and intracellular hypothyroidism

    Hi pattismith - I have added in the units
  5. clive powney

    CFS/ME and intracellular hypothyroidism

    @pattismith the second link is the same as the first one. It is interesting your comment on TH resistance maybe a consequence of immune reaction after an infectious trigger, as both my wife and I developed symptoms within a few months of each other and whilst they are not the same there is a lot...
  6. clive powney

    CFS/ME and intracellular hypothyroidism

    just found this link :- https://clinicaltrials.gov/ct2/show/NCT02060474 Not that we have the syndrome, but potentially where there has been something happen to us to upset the balance of our hormones, possibly a similar syndrome could develop with different symptoms if developed in later life...
  7. clive powney

    CFS/ME and intracellular hypothyroidism

    Additionally - I just ran my wife's panel from may 2014 through the software and she was also out of range on the TTSI - 319. She has very similar symptoms to me apart from excessive sleepiness and does not see any improvement particularly on T4. She hasn't tried T3 yet as she is not as...
  8. clive powney

    CFS/ME and intracellular hypothyroidism

    I just ran my thyroid panel results from a few years ago through the SPINA software (before I was on any thyroid replacement therapy) and all of my values were in range - apart from my TTSI which was 296 - way out of range. After this panel I tried :- T4 - any dose of which above a very small...
  9. clive powney

    CFS/ME and intracellular hypothyroidism

    sorry bit of a misunderstanding. my tsh was at this level before t3 even though my thyroid had (according to the consultant) been in quite a poor state for quite a while - I was trying to show that even a tsh with an almost "normal" reading doesn't really mean anything. It was the scan of the...
  10. clive powney

    CFS/ME and intracellular hypothyroidism

    Don't forget we are in the UK :bang-head::bang-head::bang-head: What do you treat your immune system with and how was it diagnosed as problematic?
  11. clive powney

    CFS/ME and intracellular hypothyroidism

    how did you get immune system and infections diagnosed??? I have been pretty much everywhere except to see an immunologist. A way in to see one of these consultants eludes me.
  12. clive powney

    CFS/ME and intracellular hypothyroidism

    hi - my reverse t3 was on the high side of normal, and my free t3 was on the low side of normal. As I understand it, the important thing is the ratio of free t3 to rt3. If your t3 is low and rt3 highish then there may well be a problem. My tsh was under the top of the normal range around 4 and...
  13. clive powney

    CFS/ME and intracellular hypothyroidism

    I have been ill with ME/CFS for approx.14 years now , going downhill bit by bit for the first 11, having the need to retire on ill health grounds about 8 years ago. I tried a protocol from a book "Recovering with T3" by Paul Robinson. The protocol suggests that T3 is the major issue with many...
  14. clive powney

    Lesser Known T2 Thyroid Hormone Activates Mitochondria

    haven't been on here for ages but would like to chip in here a little. I have been taking quite high doses of T3 (75mcg in equal doses per day - in line with Paul Robinsons book "recovering with T3). I have moved from an average 4 on the bell scale to about an average of about 6. I had always...
  15. clive powney

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    thing I am struggling with at the moment is the mtor inhibitor question. There have been statements that some of the mtor inhibitors have made people feel good eg itraconozole anti fungal , and I for one feel slightly better when taking some of the things on this list - alcohol for example (only...
  16. clive powney

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    I now have spare no2 black and l-citrulline (more than enough for a trial) if anyone want them please PM me
  17. clive powney

    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    just donated $75 - around £53. My mitochondria were tested by Dr Myhill in the UK about 10 years ago and found to be only working at around 25%. She has done loads of work on this subject and it's relationship to ME/CFS and it's severity. Unfortunately I never found any of her treatments useful
  18. clive powney

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    been on this supplement for nearly a month now and unfortunately there has been no improvement whatsoever. My symptoms have waxed and waned as per usual so I am stopping. Hey ho!
  19. clive powney

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    ok so I started to continue with my gardening and felt ok till lunchtime, Them I felt my usual wave of tiredness and feeling crap and had to rest. It wasnt a crash, but it was something that my body was doing to stop me continuing. I felt rubbish for the rest of the day. The last three days I...
  20. clive powney

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    Looks interesting from a cost and ingredient perspective. Keep us up to date I have also seen these which would cut out the need for me taking a lot of other supps I currently take ...
  21. clive powney

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    woke up this morning after having had problems getting to sleep for some reason (need to keep my eye on that as I have been sleeping quite well of late) and feel no worse than I do when I have done nothing, even though I have spent a very busy 3 days gardening. I intend to paint the fence and...
  22. clive powney

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    been on these tablets since 18/4/16 (started at 1 per day and moved up by 1 per day until I was on 8). I am doing quite well at the moment and seem to have a bit more energy and have the willingness to do things and have been quite busy the last 3 days or so and enjoyed mowing the lawn and...
  23. clive powney

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    I have tried ldn about 7 or so years ago - no luck whatsoever. I might look into aspirin, although there have been some issues with long term use from what I remember.
  24. clive powney

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    I was tested positive for lyme approx 10 years ago in both an Amercan and German lab and was on ABX for over 2 years - all sorts of variations , but they never really worked and I continued to decline. red wine is a favourite of mine for relief and as you have said, if I travel abroad in the...
  25. clive powney

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    Gregh286, Reading your posts , your pathway to sickness seems to be quite close to mine. I was a very sporty person and was still v fit at around 39 - probably doing too much. I then got shingles and I had a funny turn on a squash court whereby my body panicked and I thought i was having a heart...
  26. clive powney

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    Hi Gregh286, I am becoming more and more intrigued by this vaso dilation idea , the more I read. I am looking at trying this product but have a couple of questions: where is the fluge and mella paten for no2 patent - I can see one for generalised NO treatment? is there any evidence on long...
  27. clive powney

    Lecture by dr Hanne Thürmer - RituxME and current development

    This is the first time that I have read on here that alcohol has a positive effect on anyone. It has always been that by far the majority are alcohol intolerant. I have said from the very start of my illness that 99% of the time when I drink alcohol I feel so much better. It has to be more than...
  28. clive powney

    Dr Amolak Bansal & Jorgen Jelstad TV interview at ME conference/Dr Bansal's research

    @SOC It is great to hear that you (and maybe your daughter) have recovered enough to lead a normalish life. Have you got a "story" of how you managed this (sorry if you have done this before). Also is there any single resource that you can point me in as to the current thinking of the experts...
  29. clive powney

    Detection of Mycotoxins in Patients with CFS

    Thanks PSZ. Any chance of giving me an indication please of how you got this done? Please PM me if you feel it is not for forum (or non forum users) eyes.