Very upset over years of not being able to sleep at NIGHT! Anyone solve this?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by bretzie, Jul 17, 2014.

  1. IanH

    IanH Active Member

    10mg Amitryptiline with 2mg melatonin SR. (NOTE melatonin SR and melatonin have very different effects and side effects. You should not take melatonin! It has a very short life and the sudden drop in level during the night is not conducive to better sleep).
    You could add oxytocin 20IU nasal spray

    Or if the melatonin SR is a problem then substitute with the oxytocin.

    All before bed

    Works very well for most people. Talk to your doctor about this combination. Your doctor must consider the interactions between this combination and the certraline you already take.
    Last edited: Aug 1, 2014
  2. bretzie

    bretzie Member

    I
    Hi kbak

    Thank you so much for your response. I'm way behind on everything. With CFIDS, I can do one thing a day and that's about it, ugh.

    I want to respond to everyone tomorrow or Monday. I'm copying everyone's great responses and I'm SO SO grateful for your kindness and generosity in taking the time to comment.

    Update: On August 30th, I started taking 2 drops of Melatonin with water before bed. On waking, I take 15mg of DHEA. I'm going ASAP to my CFIDS MD for saliva tests on Melatonin, DHEA, Cortisol, etc.

    Small progress -- sleep's occurring a bit earlier, 630AM vs. 9AM and I'm waking up earlier too, 230PM vs. 5PM. I'm thrilled with this. So far the little bit of Melatonin has not interacted (as far as I can see) with the Zoloft.

    You guys give me the courage to TRY things. And I have to say I DO feel somewhat better overall.

    Hugs :)
  3. munch1958

    munch1958 Member

    As soon as I got on growth hormone, I was finally able to sleep a very deep sleep. I had not been able to sleep since second grade. I tried all the band-aids like ADs, melatonin, anti-histimines, sleep meds, etc. The marker for a deficiency in growth hormone is a low IGF-1. I had to take a stim test and my endo has to write the prescription but my insurance does cover it.
  4. bretzie

    bretzie Member

    That's great!! I'm keeping a record of all the wise things you people are saying. OK so low IGF -1 is an indication for growth hormone. I don't have an endocrinologist and I doubt Medicare would pay for growth hormone. But can put on the list of things to check. Thanks!!!
  5. bretzie

    bretzie Member

    Hi Nanie,

    OMG, my brain is totally gone. I already answered you. I'm so sorry. Just going to leave this though. A very belated THANK YOU for all your info and feedback. My brain's as tired as the rest of me. Having big crying jags lately. Fun Fun. I agree it's the whole system that''s wacked out. Wish I could get to a doctor who does bio-identical hormones as this CFS mess started around menopause. I'll bet I could benefit from hormones like estrogen, progesterone, testoserone, etc. These doctors are not in the Medicare system, so out of my league.

    I'm sure my adrenals are shot! DHEA sounds needed too. I started taking a 15mg of DHEA when I wake up (about 230PM) - til I can get to the Kinesiologist and have my saliva tests done or even to my CFIDS MD. Frustrated as everything helpful requires me to be UP during the day. I'll get there, just so damned slow.

    No money for a Functional Medical Doctor - only have Medicare which doesn't cover that except for a tiny tiny amount.

    But will be going to this welll regarded Kinesiologist soon. He has a very low fee. When I can be awake to do this. He's not nearby, about an hour away. Sorry to sound like excuses excuses excuses, but I'm very weak and so depressed. Exactly why I should force myself to get there ...

    Cytozme is that the same as Cytomel ... the other thyroid component when you're taking artificial thyroid med. I take Armour 90mg/day. Also need that tested as well.

    Thanks again
    denise
    Last edited: Aug 7, 2014
  6. Nanie46

    Nanie46 Moderator

    Hi bretzie,

    Cytozyme AD is a supplement for adrenal fatigue. It is Neonatal Adrenal Complex (bovine).
    I just went to a new Dr for my bioidentical hormones, thyroid and adrenal fatigue because my other Dr who was managing those things retired.

    I was lucky to find the new Dr who is a family practice Dr who is knowledgeable of bioidentical hormones, is attending ILADS conferences to learn more about tick-borne diseases and is testing her patients for Cpn. She is really looking for the root cause of her patient's problems, which doesn't always happen.

    I will be switching from Cytomel to Armour soon.
    I hope you can find a Dr to help you. Read as much as you can about those conditions and do as much as you can for yourself.
    Investigate family doctors too, since once in awhile, one may have training in bioidenticals.
    I looked on the A4M website for practitioners.
  7. bretzie

    bretzie Member


    Oh Nanie, I can't use any product that comes from a baby animal (neo natal - newborn). Yeah I use Armour and not happy to do that, but I do my best to avoid products from animals in general as I love them. Just me.

    I'll check that A4M site. Yes check out family doc's and enquire re bioidentical hormones being in their treatment bag.

    I can't read one more thing as I'm also plumb worn out. Also not sure what the problem is. I know I need to be tested for all the hormones.

    Wish I could afford private insurance, but can't, so will have to just keep on keeping on. My big hope is this kinesiologist who is raved about and so reasonable ($47/visit). I plan to get to him right after I get my cat to the vet for much needed toofie cleaning.

    So glad you have this wonderful new doc. Did you find her on the A4M site? She sounds just like a doctor SHOULD be ... looking for the causes not just shutting you up with bandaids. Good luck on this and everything.
  8. Nanie46

    Nanie46 Moderator

    Thanks bretzie!

    I knew about my new Dr from a friend, but I did note that she is on the A4M website also.

    You might want to investigate adrenal supplements that don't come from animals. There are bound to be some out there.

    I really hope that kinesiologist can help you. Blessings to you!
  9. Nanie46

    Nanie46 Moderator

    I listened to 14 hours of lectures online in June during the Thyroid Summit. Those practitioners agreed that one's TSH should be around 0.1-1.0.

    I just saw a new Dr....actually I saw her CRNP, but she wants my TSH around 0.4 which I totally agreed with, since it was higher than that last time it was checked.

    The presenters said that the acceptable value set by the Endocrine Society that most doctors use, was based on the last 1000 tests and represents a group of sick people (those with thyroid disease or suspected thyroid disease), so therefore it doesn't make sense to use that value.
  10. LadyCarol

    LadyCarol Member

    It can be very difficult for some people to achieve a steady state TSH below 1.0 or even close to it. The risk of the person becoming Hyperthyroid becomes an ever increasing risk as TSH trends below 1.0. The problem is many with low thyroid have an autoimmune issue with their hypothalamic-pituitary-thyroid (HPT) axis which means it doesn't properly control thyroid levels in general. As a result if someone takes too much thyroid med/supplement the thyroid isn't able to respond accurately as in a person with HPT function. As such it is safer to air on the side of caution and ensure there is sufficient influence from the feedback loop that involves the HPT axis.

    Nanie, did the Thyroid summit discuss the link between too low a level of the combination of T4 and T3 (irrespective of TSH level) and active Hemolysis ?

    Hemolysis can lead to haemolytic anemia and that alone will make a person feel tired and exhausted, it can also be life threatening if not stopped.
  11. Nanie46

    Nanie46 Moderator

    Hi LadyCarol,

    No, that was not discussed in the 14 hours of the Thyroid Summit that I watched. There were 8 hours of presentations per day for 7 days. I only had time to watch 2 hours per day.

    They talked a lot about how to help your body convert T4 to T3, such as taking selenium.
  12. Kelly Blue

    Kelly Blue Member

  13. bretzie

    bretzie Member

    Hi Tiger Lilea

    Sorry for the long delay. I WILL ask my CFS MD when I see him 10/13, but my guess is he'll probably tell me to talk to a gyn first. I definitely will followup on this progesterone. Sleep hormone sounds great.

    Thanks so very much
    bretzie
  14. GvMeStrgth

    GvMeStrgth Member

    Hello Bretzie,

    I too did/do the same with sleeping odd hours, usually cycling around the clock ex. 4am - 8 or 9am then to say 9 or 10 am - 2 - 4pm until I was sleeping early evening until I eventually would get to night, sleeping the hours most others do until I would go through it again at any given time. I maybe would be able to sleep early am hours but would wake very early and couldn't get back to sleep, eventually napping later. And I wasn't on any anti- depressives at the time.

    Please hear me out per my opinion may not be a popular one. I've suffered with Fibro/CFS since about 1997 and more recently Myofascial Pain Syndrome. I never improved and seemed to be getting worse. I moved out of state and my docs from that state never found a problem with my thyroid, but I felt more than likely there was since my mother suffers from thyroid disease and it tends to be hereditary besides I was hoping a pill could solve my problems than dealing with this mess without a cure.

    I would press my doctors for a thyroid test only for them to tell me the test results were normal. It wasn't until I saw a doctor after my move did I finally get confirmation. That doctor's name was Dr. Kellman, he's an expert in thyroid disease he also touts he uses a different testing method than a lot of doctors, a more sensitive test. My personal theory is Fibro is a result of a malfunctioning thyroid gone untreated, and in our cases it may or may not be reversible to a certain degree. Once I was put on a thyroid pill I had high hopes it would solve my problem but that wasn't the case. I improved some but was still tired and achy.

    Then Dr. Kellman suggested I take supplements, Metagenics Thyrosol, this is when I began to feel more like normal but I hadn't made the connection. I knew I was anemic and just thought since I was finally taking iron pills regularly this was making me feel better along with the thyroid pills. I started working 2-3 days a week, then I ran out the Thyrosol. I started to go back to that old self and couldn't keep up with working. I didn't know why, I thought maybe I just experienced a remission just prior, the reason I could work. Due to Dr. Kellman leaving and his new practice not accepting my insurance another doctor "stole" me to her small office. She didn't carry Thyrosol and I couldn't find it until much later. Had I known this was what I couldn't live without I would have searched harder and made sure in my small budget to allow for them being on the top of my list.

    I'm happy to have been able to see Dr. Kellman especially since he's expensive and at the time he accepted Medicare, but he knows his stuff. Although I recommend him I don't think it's necessary for everyone to see him. If you Google him he gives his recommendation on what type tests to get for the thyroid. I think this is key being that most Fibro/CFS sufferers have undiagnosed thyroid disease. There are some doctors that use the same sensitive test but they are hard to find.

    O'k, now for Dr. Brownstein, this doctor I've never seen but I happen to run across advertisement regarding Fibro. He had a video I was curious to watch simply because I wanted to see what the next magic potion was. Yes Dr. Brownstein was selling a product but I wasn't interested, well not until after the end of the video explaining why thyroid disease was going untreated and how he explained how and why our bodies were behaving like it was. He explained everything I had a feeling was happening and some of what I knew from Dr. Kellman. See it's not only Adrenal fatigue although it's a part of it being that they thyroid controls every aspect of our bodies after the pituitary gland, but once receiving messages from the pituitary gland and the thyroid is off then everything else goes haywire in our bodies including the adrenals, our intestines (IBS), muscles, joints, nerves well you know the deal.

    I'll try to say as much as I can remember (at the moment I'm trying to build back up my energy since I missed taking my Thyrosol for a month and I'm paying for it now--it's been a slow process) but his video told of doctors switching types of test for thyroid in the 70's, the USDA not requiring a type of food ingredient in bake goods that attributed, and Americans not getting the needed iodine needed and not satisfied by the iodine in salt. He said what was needed was iodine, Selenium, Zinc, Vitamin E and D, Riboflavin and Rosemary Leaf and other minerals needed. These among other things are in my Thyrosol supplements and is in the product he was pushing. This is when I took interest in his product, especially since it's cheaper than my Tyrosol. I might be willing to switch although I'm afraid to since I don't want risk and go back to feeling dead tired again.

    For those who have read this far I don't have a connection to any company or doctor I mentioned, I'm no longer a patient of Dr. Kellman and Tyrosol certainly isn't paying me or giving me a deal on it's price. And as I stated before Dr. Brownstein I've never met or used any of his products.

    There are those who take these ingredients singularly and I guess you could in this case knowing the amounts needed for each so buying these products may not be necessary but for me it's just convenient.

    If you do decide to try Throsol, first talk to your doctor to see if you can, if so make sure you take 2xs a day (used to be 3xs a day for the first 2 weeks then 2xs for the duration). It takes awhile before you are at your optimal. At least 1-2 months before you may feel a big difference but you may experience small improvements in say 3-4 weeks.

    A 180 supply of Tyrosol cost about $64.00 @ Vitacost.com, Amazon sells them too, even cheaper, but I wouldn't recommend them there being I had a bad reaction once from one seller and wondered if it was a imitation so I stopped taking them. Buying them direct from the Metagenics company cost more.

    Again, if you decide to take them give it time and good luck. Oh and I now am sleepy at night instead of during the day. I'm able to function during daylight hours without that groggy feeling throughout the day.

    P.S. I'm trying to locate that video of Dr. Brownstein's but I can't find it (I looked at it on another computer but it might be on YouTube). I couldn't even remember his name until I Googled and I haven't located that particular product he was selling either, but he does have a site also.

    For those who have an ear to hear I'm only trying to help.
    Last edited: Oct 4, 2014
    bretzie likes this.
  15. bretzie

    bretzie Member

    Hi there ....

    You are so kind to offer such complete info. Suggestion: a summary would be great. I am definitely going to copy your reply along with others who have been so kind in sharing their wisdom here.

    Thyrosol huh? What's in it do you know? You say it helped your iron deficiency (I have that too).
    Do you need an RX from your doc to order it from Metagenics ... ???

    OMG, I just realized who you saw ... Raphael Kellman!! Oh boy I had such a horrible experience with his office years ago. They were AWFUL. Yes he does the TSH (Thyroid Stimulating Hormone) test. BUT he did not see me himself and he had a raft of awful part time doc's who were clueless. I was so angry and disappointed. He also had me go through many needless tests (to make money from Medicare of course) such as bone density, for example, wasn't needed then.

    I'm glad YOU had a good experience with him. Whoah, gives me the shivers thinking of him.

    Does the supplement by Dr. Brownstein give you the same great results as Thyrosol???

    Right now I'm taking 70mg Armour Thyroid (probably way too low). Going to my CFIDS MD on 10/13 and will get a bunch of blood tests (I know what thyroid measures to ask for). Getting a low normal reading on a thyroid test IS an indication your thyroid is hypo. My doctor is very willing to work with his patients.

    Thanks so much for your interest and efforts ... will be interested in your response.

    bretzie
  16. bretzie

    bretzie Member

    I just talked yesterday to what sounds like a very good and savvy naturopath in MA. I live in NYC. She was discussed very favorably on my NYC CFIDS/Fibro Meetup Group Board. Since I haven't had a "session" yet with her, I'm not going to mention her name til I see how things go.

    Having my first phone session on Tuesday and we'll see what happens. She's in Womens Health, deeply into herbs and sounds excellent as well as very empathetic. I told her all my issues and she's sure (as am I) that adrenals are involved in my sleep issues. May not be the total answer but I'm sure they are a part.

    I'll let you know how it goes.

    bretzie
  17. GvMeStrgth

    GvMeStrgth Member

    Sorry for the long response. Well it could have eventually put you to sleep.lol

    Oh and you're welcome. Just hope that it can help others as it has helped me. Great you are seeing a neuro doc. I'm also hypo, I started on armour but now take synthetic 100mcg. I like it as I know many don't, armour wasn't doing a thing for me.

    Yes! That's him, Dr. Raphael Kellman. I saw him years ago when he was on Park Avenue in Manhattan, then he moved to 23rd and Madison but only stayed for a short period. I think he has difficulty with other doctors. I would try to keep up with his moving so I could get my supplements but he never stayed in once place too long. But I didn't experience running a lot of test thank goodness.

    Yes, in some of those offices there were quite a bit of young doctors just starting out and he meshed out patients to them. I found him pleasant and accommodating when I had a question regarding supplements. It was one of those doctors with her own practice that asked me to see her. I later stopped going to her since I felt she was only interested in money.

    No, I also take Metagenics Hemagenics for iron. No, I've never used any of Dr. Brownstein's products.

    Here's what's in Thyrosol.

    Vitamin A . . . . 3000 iu
    Vitamin D . . . . . 400iu
    Vitamin E . . . . . . 100 in
    Riboflavin . . . . . . 3mg
    Niacin . . . . . . . . . .4.5mg
    Iodine. . . . . . . . . . .76 mcg
    Zinc . . . . . . . . . . . . .10mg
    Selenium . . . . . . . . . . . 150mcg

    Rosemary Leaf . . . . 79mg

    O'k and this other stuff I can hardly pronounce, but it's vegetarian! :D

    Other ingredients: Microcrystalline cellulose, cross armed lose sodium, silica, stearic acid (vegetable), and coating (water, hypromellose, medium chain triglycerides, and hydroxypropylcellulose).

    www.metagenics.com
  18. GvMeStrgth

    GvMeStrgth Member

    Now I'm sleepy. Going to say goodnight.
  19. GvMeStrgth

    GvMeStrgth Member


    I re-read your response and corrected a few more errors in my original post and saw a question I didn't answer. Dr.s that carry Metagenics usually won't dispense w/o approval, not necessarily needing a rx script but you do need your dr.'s approval since monitoring your t3/t4 levels is important. The reason I always say get your dr.'s advice.

    With me taking both the thyroid pills and Thyrosol for over a year my most recent t3/t4 levels were still in the normal range when tested by my ob/gyn. It Lifted my levels some without going over. In no means am I saying it's a cure-all. It simply makes life more functional. . . at least for me.

    I'm thankful to Dr. Kellman for being one of the few dr.s who acknowledges the problem with thyroid tests and speaks out about the TSH test. There are just too many arrogant dr.s out there that refuse to make changes citing nothing is wrong with their test, meanwhile everyone suffers.

    I had it with many dr.s, the protégé I saw from Dr. K's office gave me the same feeling you had from him, unnecessary testing and when I would repeatedly call her office just for a refill to be called in the response was to come see her first. Mind you, I wasn't calling in for opiates, it was a refill on thyroid pills. No, my thyroid levels didn't need to retested since she constantly monitored and took blood test for levels. I explained my energy level was low and climbing subway stairs wasn't going to happen, I was too fatigued. I thought she was sadistic, and what happened to that do no harm oath she took? I was already seeing her regularly with only weeks in between so it wasn't like I wasn't seeing her in months. I finally stopped going to her especially since her office waiting room would be filled with geriatric patients. I'm sure she ran the gambit of test on them being they more than likely had more ailments in advancing age. Dr.s. . . .ugh.

    Too many of them find ways too squeeze Medicare for every penny at our expense that's for sure.

    Had to edit, dang autocorrect.
    Last edited: Oct 4, 2014
  20. GvMeStrgth

    GvMeStrgth Member

    Hi Bretzie,

    How are you doing? Did you decide what protocol you would take?

    I forgot to suggest taking a multi-vitamin too. I always get a script from my doc, I just feel the prescription vitamins are better, but I ran out and hadn't had them for awhile. Just started taking them again and noticed the boost it has given me. I also take other vitamins and supplements. You could look up my list under I think it's what works for you thread if you're curious.

    I'll apologize in advance if you respond with any questions since I don't know when I'll be back on the computer....long story but I'll try to get back here again soon.

    Take care.