Discussion in 'Fibromyalgia Main Forum' started by tansy, Jul 24, 2003.

  1. tansy

    tansy New Member

    Result from test is TSH 0.9 REF 0.35-5.5 This does not appear to be indicative of hypothyroidism. However on day of test still felt very shaky after previous day's reaction to heat.

    This is how it seems to go for me either really damped down or feeling shaky. Am aware that like klutzo I have what feels like adrenal surges but they are different from this. Could it be that I'm going up and down cos that's how it feels. This has been going on for nearly 5 years now and is not the same as my typical cfs fatigue. Every now and then things feel more stable but it never lasts for more than a few days.

    Would you still recommend thyroid and if so what form do you recommend? I know the more holistic drs like armour thyroid but this is more complicated to prescribe on the NHS, so not all GPs will prescribe it.

    In light of these levels ie not high enough perhaps for my GP to prescibe thyroid would it be best to pay for T3 and T4, can't really afford too many tests but if it's necessary I will do these.

    Thanks so much for your time and input. I feel taking some of the strain off my body's systems would give it a better chance of dealing with pathogens and the other things that have been going wrong over the years.

    What would we all do without you!



    ps seeing GP on 7th August, will discuss 5mg cortisol am and noon. Thanks for your explanation and recommendations on these.

    [This Message was Edited on 07/25/2003]
  2. tansy

    tansy New Member

    for Madwolf. Need all piossible info and suggestions before presenting all this to GP.



  3. tansy

    tansy New Member

    just wanted to be sure before trying for all of this. GP is supportive, thinks holistically, but is wary of drugs and anything that may rock the boat.

    No chance of seeing anyone else who's into all of this in the UK on the NHS so have to make the most of my GP who is human and does care.

    Ordered Teitelbaum,s book with a few others including adrenal fatigue from amazon, still not arrived will chase them up.

    You have actually helped a lot more than you might think, just needed some reassurances over safety I guess, had some bad experiences with prednisolone and other drugs. It isn't just my GP who's being perhaps too careful.

    Thank you hugs


    ps love your comment about normal just being a setting on the dryer.

    [This Message was Edited on 07/25/2003]
    [This Message was Edited on 07/25/2003]
  4. klutzo

    klutzo New Member

    ...that you may be hypoglycemic. Hypoglycemia often goes hand in hand with adrenal fatigue, and can cause surges of adrenalin even if your cortisol is normal!
    Keeping your blood sugar high enough to support life is a vital thing, and your body will use adrenalin to correct it if it drops too low. I'm not sure how this works, but I know it does, from reading Dr. St. Amand's book, and from my own AWFUL experience with a 5 hr. Glucose tolerance test after having fibro for a little while. I had GTT's before fibro and they were no big deal, but once I had fibro, the GTT made me so sick I thought I was going to die. I had to leave my car at the clinic and call a taxi to get home. Dr. St. Amand describes that 40% of fibro patients he tested had this strong adrenalin reaction to the glucose test, so he stopped using it in his practice, feeling it was cruel to put us through that.
    If you are hypoglycemic, a trial of a high protein/low carb diet will not hurt and you will know within a couple of weeks if that will help you. It sure has helped me.
    Also, there are drugs that can cause rebound adrenal surges. I know because I used to have a major problem with this since I am dependent on Xanax. Xanax is prescribed to take every eight hours. The problem is that most of it wears off after five hours. This causes a huge rebound problem that can result in the major adrenal surge known as panic attack. Once I learned this, I cut my dose in half, but I take it every five hours, and I have only had two panic attacks in the past two years (and both of those were really POTS, not panic)....
    That brings me to your mention of heat causing the adrenal surges....this sounds suspiciously like POTS to me! Many of us have Postural Orthostatic Tachycardia Syndrome as part of our autonomic dysfunction. Standing up quickly after sitting a long while, or standing for long times in the heat is a major trigger. One thing that seperates POTS from panic, is that a POTS attack is not over quickly, but can go on and on and on, and leave you feeling shaky and vulnerable to more attacks for 2 or 3 days afterwards. If you must be out in heat, keep changing position. When you stand up, clench your stomach muscles hard as you stand up. If you must stand for a long time, cross your legs and squeeze them together. These clenching and squeezing actions will keep your blood pressure from dropping and pooling the blood in your hands and feet, which deprives your brain of oxygen, which causes it to send out alarm bells, which releases adrenalin to get that blood up to your head, etc......
    I hope this gives you some ideas, and please keep us posted on what happens if you try the thyroid hormone. I know Dr. Lowe says on his website that some FMSers need to go all the way to a hyperthyroid TSH to get relief, but most docs won't do that. If you do take it, I'd recommend what Dr. Lowe does for his patients who have good TSH, ie. having a DEXA bone scan every 6-12 months. Better safe than sorry.
  5. tansy

    tansy New Member

    Yes I do have problems with hypoglycaemia and thought I had it pretty much under resonable control until this happened big time this summer. Am on high protein low carbs diet, for candida as well as well as blood sugar stabilisation. In more recent years sensory overload sets it off too in a different way from before but nothing like the heat has done.

    Yes I suspect POTs and my son would appear to have a milder form of it too, thanks for the advice on that. Been passing out and feeling like my sugar has plummetted on and off for 39 years now, used to get teased I could walk, run, or swim for miles but standing still for long caused obvious problems. When this happens it does takes days to recover not just a matter of hours so I'm sure you're right.

    Findings on disrupted circadian cycle threw light on some things too. During the hot weather it took until late afternoon to get blood sugar up and rehydrated. At that time the shakes and nausea would ease down to a more tolerable level.

    When I started to go into what seemed a relentless downward spiral 5 years ago fatigue was different, I had that awful frazzled fatigue and virtually no sleep. Knew I was dealing with either something different or my DDs were presenting differently. The cfs fatigue I have too is different from this.

    Hypercoagulation and chronic pathogens made sense due to history etc. Allergies, candida, gut dybiosis etc all there but I can manage those myself for the time being too. But the adrenal and thyroid thing at last seems to make sense of difference in last five years plus weight gain having been underweight before that. That's the bit I really couldn't understand because basic tests came back within normal range. Now I'm beginning to understand why.

    Phewwwww. Thank goodness: it was doing my head in trying to get the bottom of that. Wasn't A type, but POTs and hypercoagulation etc made sense of choosing more physical activity because I felt better health wise, cfs put an end to that.

    See my GP on the 7th of August so that'll be interesting, just hope I can persuade her to give it a try, thought suggesting a trial run might help. Doses are low enough I think for her to feel comfortable and Dr Mayhill's site in the UK suggests low dose cortisol too.

    Have you decided which probiotics to use? There seem to be so many, makers each claiming their's is one of the few that's as potent as claimed. We end up having to do so much research, with fogged and fatigued brain's that's no joke.

    Now that I'm also persuing this area I feel so encouraged by how much better you feel since addressing problems with PTA axis.


  6. klutzo

    klutzo New Member

    My new doctor likes Metagenics, but I told him I can't afford them on a regular basis. He also suggested iflora, but I looked them up on the Internet and they are expensive too, plus they are not delivered packed in ice, and it is 90 degrees every day here now, and will be until around October 15th or so. Heat, as you know, kills live probiotics. So, for now, I am just taking my NSI Probiotics that I've always taken, but inbetween meals, and taking 11,000 units daily instead of the 1,200 I used to take with meals. I always forgot to take them between meals, so I took them with meals instead, and that is probably one reason why they weren't doing such a good job.
    However, I wonder just how badly they are really doing! My candida result was +2, while my bifidus was also +2 and my acidopholous was +4.
    I was taught that everyone should have some yeast in their bowel, but that as long as the good bacteria were higher than the yeasts you are OK, and my good bacteria are quite a bit higher than my yeasts.
    So, I wonder if this doc isn't over-reacting. Also, it said on my test results that my yeasts are resistant to Nystatin, but that is the antifungual she gave me anyway. Seems like a waste of $40 per bottle to me, if it's not going to kill the buggers.
    I'll ask the new doc about this next time, now that I am seeing a doctor closer to home.
    It sounds like you have a handle on your problems and know what to do, but like you said, there is SO much to remember.
    As a member of my support group used to say: "Taking care of Fibromyalgia is a full-time job".
    [This Message was Edited on 07/25/2003]
  7. tansy

    tansy New Member

    and between meals is a good idea. Surprised at your doc's RX for nystatin when the candida's already resistant. Someone here posted about berberine complex, much cheaper and supposedly effective. I looked it up and it does look promising. You'll need to check on contraindications though. Changing and increasing my probiotics has paid off but still have a long way to go.

    Yes I now have some idea as to where I'm going thanks to you and others on the board BUT financing it and getting my GP to RX the necessary, is going to take some planning and will not be easy.

    Just done draft of letter for MP (UK govt) about ban on supps, founding starting from scratch too difficult so copied and pasted from a web site then wrote around it. I quite surprised myself. Slowgirl asked if I'd post something like this for others from the UK to base their letters on. We're running out of time otherwise I'd have left it for a bit longer.

    Well the temps gone down further and I had acupuncture today which seems to have helped too.

    Take care now.


    [This Message was Edited on 07/25/2003]
  8. pinkquartz

    pinkquartz New Member

    because they are so much better than any i have tried in 20 years.

    i get them from my nutritionist, and i keep them in the fridge.

    Tansy i don't know why the email isn't working.

    i expect you are away this weekend,

    love, pinkquartz