Madwolf my GP said yes

Discussion in 'Fibromyalgia Main Forum' started by tansy, Aug 6, 2003.

  1. tansy

    tansy New Member

    to 5mg hydrocortone twice a day. She was very hesitant and looked up all the info and considered every side effect and precaution. I had cut and copied your comments and referrred also to Dr Sarah Myhill's use of this drug these did help sway her intial reluctance.

    So we came to an agreement on a 4 week trial, then we can discuss whether it will be prescribed for longer.

    Thanks for pushing that and explaining why it should be tried.

    She was less sure about thyroid so I will probably have to pay for free T3 test and more if I continue to experience low thyroid symptoms.

    Oestrogen is apparently far too low, had PE so we were trying to avoid HRT but we've now agreed on the lowest dosage patches Estraderm 25mcg over 24 hours and 12 days in 28 on 1mg Norethisterone.

    With these and all my supps and herbs I should be flying soon.

    Will let you know when I do!

    Thanks so much for all the info and opinions given so generously to those of us who would feel at a loss without your expertise to draw upon.

    Thank you hugs


  2. nickname

    nickname New Member

    .......brilliant!!!!!!!I want to join your GP's list - why, oh why can't they all be like this. Good for you.

    Send us updates.

    best wishes
  3. tansy

    tansy New Member

    over 20 years to find a decent GP, Consultant wise it's been a different story, not seen a knowledgable or accepting one yet. Only two decent doctors I'd seen before were those I paid for privately many years ago and they did help; not as much was known then as now, but it was still very worthwhile.

    One of these doctors got my son back on the slow road to recovery when he too became very ill. He's just been round and looks so well (he's started on some new supps and a different diet) and has a new girlfriend! All smiles and positive about his very demanding final year at Uni just coming up. At the same time he'll be running the security at the venue where he works evenings and is social secretary for the uni's rugby club. He's also going on a course to learn how to be a coach and will spend time in a local school running a touch rugby session. Phew!!! My final year, decades ago, was so much easier.

    When is Dr H going to start getting your hormones back on track? Would like to hear of his treatment choices. I'd done the herbal and supp HRT and it clearly did not work well enough. Would have preferred to go alternative route on hormones but cannot keep finding yet more money. My GP does not like using HRT unless it's really necessary and goes for the bare minimum which suits me.

    Hydrocortisone wise I started on 2.5mg today, will try 2.5mg twice tomorrow and for a few days, then double first dose only for a few days, then go up to 5mg. To be honest she wasn't that keen but being so human and empathetic she is really trying to help. Even though heat so disasterous there have been modest improvements and she noticed them, think this has made her more confident that I know what I'm doing. Not sure I'm that clear on as much as she thinks I am but I'm getting there.

    Do keep me informed on how you are getting on, I know it's been so galling for you of late but I think you are seeing the best Dr in the UK and it's clear he will search for answers on your behalf. He does seem very thorough.

    Take care now and keep cool


    [This Message was Edited on 08/07/2003]
    [This Message was Edited on 08/07/2003]
    [This Message was Edited on 08/07/2003]
  4. pinkquartz

    pinkquartz New Member

    hope you start to feel the benefits soon.
    i had just a four week trial to begin with . make sure you drink plenty, i always drink loads and needed extra for a few weeks.

    interesting you are low in estrogen.
    thats what we want to test me for, after years of self prescribing progesterone cream my nutritionist has got me to come of it, and do the hormone tests. except i can't do the tests yet. got to wait for the dhea dose to be stable.
    just today i have been trying to read and understand what i am reading. !!!
    from the book Screaming To Be Heard, the doc writer says estrogen deficiency is more common than is recognised.
    i am busting to find out if i am . like you i want to be flying LOL, however i will just have to be patient a little longer.
    love, pinkquartz
  5. tansy

    tansy New Member

    showed up on my saliva test. The NHS should be able to test for levels too. You can always do the special tests later but in the meantime you might be able to get an indication without having to pay.

    Actually I started to wonder when I looked at Dr Roby's site. A lot made sense but then there were some major gliches, like-wise other sites I looked at. My progesterone is low too but not so significantly. I started to get very confused so was glad my GP picked it up so quickly, but this is one of her specialist areas within the practice.

    I think we end up being low in just about everything once we've been ill for some time. Klutzo's learnt she's low in most of the neurotransmitters and I'm sure this applies to most of us.

    Thanks for the advice on drinking more water. My GP did warn me that I might put on a bit of weight too, and I think that's due to the hydrocortisone, the oestrogen is a low dose.

    By the way low oestrogen causes insomnia, for us this becomes a double whammy because the sleep problems are already there.

    I'll know within a few weeks whether this is really going to help, if not I'll try to treat them another way.

    If you look at the best results from doctors treating CFS and FM it does seem to be those who use both orthodox and complimentary treatments that have the best results. We need what both have to offer.

    Hope you get your hormones sorted soon. I recognise this is a natural event for most women but we seem to suffer more and it does make our DDs worse.


  6. pinkquartz

    pinkquartz New Member

    for my doc to come back to work, she's off sick.
    maybe i will wait or maybe i will ask her husband. i will have to wait a couple of weeks as have 3 other appts. next week and can't do more than that in one week.

    did you see the new interaction? theres a short piece on a young woman found to be low in oestrogen and cortisol. she is just 25 !
    she was tested cos she is longterm bedbound and has oesteoporosis.
    she has regained bone desity with the HRT.
    her mother points out that no doc will take an interest in why she is low cortisol.
    this just gets more and more interesting.

    love, pinkquartz
  7. tansy

    tansy New Member

    and I think it's very significant that no one seems interested in investigating it further. If they did they would have to start treating us instead of fobbing us off with antidepressants, CBT, and GAP from health professionals who have no understanding of these DDs.

    In other words they would have to accept CFS as a real illness instead of just playing lip service to this fact.


    [This Message was Edited on 08/07/2003]