reply for Satin1, from pinkquartz

Discussion in 'Fibromyalgia Main Forum' started by pinkquartz, Jun 6, 2003.

  1. pinkquartz

    pinkquartz New Member

    hi Satin,

    i have been so tired, am still not back to normal levels, but begining to catch up.

    I did the adrenocortex saliva test, with a company here in UK called NPTech. I am told they are as reliable as Great Smokies and they are cheaper as they are in UK.
    I do all this type of testing thru my nutritionist........if you want their address let me know.

    My G.P. did a blood cortisol test as well before she would prescribe the cortisol.

    In both tests i had very low cortisol.
    In the saliva test i also had my DHEA tested and that is also very low.

    I have mild hypertension so i can't take liquorice, at least not yet.

    I will be trying to take some DHEA tomorrow, we wanted to see how the cortisol went first.

    As you read i am having some problems....i found Madwolf's reply very helpful.....it does seem that i need to add in some estrogren, but i will have to save up for the tests, as i need a new mattress desparately [condition of one i have is making the sleep problem so much worse !]
    However i feel better now i have put the cortisol back up to 15mgs per day.
    The can't sleep problem is so bad. but the last 2 nights i have taken more painkillers and slept a little more......but i don't want to keep myself so doped up on painkillers so i am still looking for a better solution.

    Armour thyroid ..... i take 2 grains and 1and a 1/2 grains alternate days. and i split the dose,, 1 grain in the morning and the rest at 4 or 5 pm.

    I think you could try the liquorice in a stronger dose ie as a supp rather than a tea.....as you have low blood pressure.
    But if your cortisol is normal maybe not..........i will do some reading and let you know if i find anything relevant......
    i wonder how you can raise DHEA if you can't take it ?
    i am going to try just 5mgs....and i am nervous about it.
    i will get back to you.....

    have you tried melatonin ?
    Although like Slowgirl i feel that after 15 months its not as effective, it was really good the first year. and it still helps me..
    i gave up going to bed early....i felt i would just go insane lying in bed not asleep and as i get the classic rise in energy at 11pm......i go to bed at midnight.........

    i haven't done the test in the book....i am trying to understand how it all works....wish i knew all this 15 years ago !!!!, [ no good having regrets though is it. :-} ]

    like you i am hypoglcemic. am trying to eat little and often and to eat breakfast......it does help,
    so do you feel better having the salt and have you tried halving the capsules of pregnenolone ?

    i will get back to you but am tired out now

    best wishes
    pinkquartz
  2. pinkquartz

    pinkquartz New Member

    bump for satin
  3. Sindy-Uk

    Sindy-Uk New Member

    Thankyou for such a nice detailed reply. I have not been on the board for a few days. My GP started me on Amitriptyline 10mg on Friday, so I have been feeling really lethargic and drowsy, even though it has not helped me much with my sleep yet.
    I did not realise they do the adrenocortex saliva test here in the UK as well. I would appreciate if you could give me their address and tel no. I had my test done last July, so I think I should have one done again. I will ask my GP for the blood cortisol, if it can be done on the NHS.
    I have stopped the DHEA altogether, but I am taking the Pregnenolone twice weekly (10mg). I still am getting Acne which I have never had before, so I dont know what is causing this. Where did you get the 5mg DHEA from? At least its nice small dose and hopefully you will be fine with it.

    I have tried Melatonin, it does not help much. Infact I tried it again last night, as well as 5mg Amitryptiline, I woke up every 2 hours and I was getting really weird dreams. It also gives me a slight headache. It did work few years ago.
    I know what you mean about knowing all this 15 years ago. I used to read a lot and thought I had learnt a lot. But the amount I have learnt in the last year since finding this website, I have not learnt all my life. It has been a godsend. I found hope when I thought I had just about tried everything and had lost all hope.

    Regarding the salt, I did find my hands and feet have started getting really warm. Whenever I have checked my blood pressure at home in the past, it always seems to be upper between 80-115 and lower 60-70. So I always assumed I had low blood pressure. But every time I have been to see DR H it has been in a range 150-170 upper and 75-90 lower. I cannot understand if my monitor is wrong. Every time I check my husband's his is always high on the same monitor.
    So I am a little confused whether mine is high or low. I am thinking of getting another BP monitor, incase mine is faulty.
    Anyway, thank you so much again for replying and hope you start feeling better soon.

    Love
    Satin
  4. sb439

    sb439 New Member

    Hi Satin, me again ...
    I also used to have rather, low blood pressure when measured at home (my mother had one of these measuring thingies)but not at the doctor. One explanation is that the stress of going to see the doctor pushes it up artificially. I think that' more likely than that your metre is incorrect.
    love,
    Susanne
  5. nickname

    nickname New Member

    ...Dear Pinquartz...do u mind me asking if u get your Armour on the NHS or privately? I have been on this for 3 years getting it privately, but a couple of weeks ago, I found out exactly how to get it on the NHS, approached my GP but we came to BLOWS! I really don't mind if it can't be prescribed, but knowing it can, and he won't, really p'd me off. He gave me a prescrip for synthetic T3 to try - won't do that till I speak to consultant again.

    ...Dear Satin...Have not picked up the story re DHEA/ pregnenalone, but I think u mentioned acne. Once good levels of DHEA ar reached, a classic sign is acne. As pregnenalone is the mother hormone controlling all the rest, I presume it may be capable of doing the same, or maybe you were already topped up with the DHEA before u stopped it. I was on DHEA a couple of years ago because of under ref levels - gave me acne too - levels were then in healthy range, so I stopped, and the acne went away almost immed. Re melatonin - headache, nightmares and nausea are common side effects, all of which I got on .25 mg, so could not continue with it.
    Anyway, hope this helps.
    Best wishes - nickname
  6. pinkquartz

    pinkquartz New Member

    hi, yes i do get it on the NHS.

    What is your doctors problem ?

    The NHS funding is something we have all paid into..........
    ..........its not coming out of his budget is it ?
    i have read the synthetic T3 is also good, but i am happy so far on the Arrmour.
    tell us what happens next......will you get it thru your consultant ?

    cheers
    pinkquartz
  7. nickname

    nickname New Member

    .....I'll keep u posted re armour v synthetic t3/nhs v private.
    Best wishes
    Nickname
    [This Message was Edited on 06/15/2003]
  8. Sindy-Uk

    Sindy-Uk New Member

    Susanne- thanks for the tip on blood pressure. I need to buy a new monitor anyway, because the other one belonged to my sister, and I have given it back to her. I was wondering if I should buy an upper arm or a wrist one. Is the upper arm one more accurate than the wrist one?

    Nickname- nice to hear from you again. I also buy my Armour thyroid privately. I dont have much luck getting any medications on the NHS. I tried getting Imunovir and Zolpidem, but my GP would not prescribe them, even though I showed her the prescription from DR Hyams. I have not spoken to her about the Armour thyroid, but I am sure she will refuse. Regarding the DHEA, I started getting acne and dark facial hair about 5 days after I started taking it. Then I cut it down to 10mg every other day. Further tests, 4 months later showed that the DHEA levels had gone down even more. Now I am taking Pregnenolone 10mg once a week. I probably should do the saliva test again.
    I dont know about you, but I am just so tired of this illnes costing me a fortune, and still not feeling any better. Sorry to vent...just having a bad day.
    Take care,
    Love
    Satin
  9. nickname

    nickname New Member

    .......just a little reply to say, yes, I feel exactly the same. Years of cost, and very little payback in terms of real health - I've had m.e. since '94 officially and unofficially since '91. Got worse in '98 with ms syptoms and that had to be excluded, but have been bed bound ever since. Armour,Zolpidem and Trimipramine have been my life savers - but the NHS don't want to know about that. I think I read somewhere ages ago that you saw Dr Byles - me too and it was she who prescribed those, but I switched to Dr H because there was nothing more on offer - have to go where we can to improve, but yes, just way too costly. Came to blows with GP about Armour and just about everything else. Sent a personal email to Barb (slowgirl) because I just could not vent that bad on the board here - I'm only just calming down and don't want to be that wound up again, so I'm gonna stop.

    I presume Dr H has tested u for the coagulation defect on live blood - seems to be very common in us lot. Am just starting to see an improvement with Inflazyme Forte, ie my legs and feet are not so blue/mauve when I stand, bearing in mind that I can only stand for about 3 - 4 mins before exhaustion sets in and have to lie down. I've posted a separate message on the board to get some other feedback on this, because I'm not entirely sure what positive effects might be if the coag problem was being addressed. It sure made me happy though, and have been in a better mood for the past 2 days. Phoned the clinic for another prescrip as I don't want to run out - told them to tell Dr H I have white feet!!

    I don't know why your dhea levels would have gone down if your are supplementing with it - maybe it's something to do with cortisol. Re the amytriptaline - if u are not depressed, I can't see why u need it - it makes everyone I know whose on it, groggy and foggy. GP's use it because it's cheap. There are other things for sleep if that's why u need it - ask Dr H.

    Sorry - I've gone on a bit. Keep in there, because I DO know how you feel.
    With best wishes and support
    nickname
    [This Message was Edited on 06/19/2003]
  10. pinkquartz

    pinkquartz New Member

    i did reply to you i think it has got lost on another thread, i did put the addy for the test place in uk.
    i only take 5mgs of the DHEA.....i bought 10mg tabs and cut them in half.
    i have read that people who have the acne and facial hair side effect it means they are a lacking a necessary enzyme.......can't remember where i read it......but i think you shoud re test.

    i agree with your feelings re spending all the money and for what !?!
    i was never in debt before, now wow, can't say how bad it is....but then at least we are trying to get better.

    cheers, pinkquartz
  11. Sindy-Uk

    Sindy-Uk New Member

    Thankyou for your reply. I am doing a reply for you on another thread, which I will send tommorrow.

    love
    Satin