I tried ordering isocort from the US and just got a call from the company and they are unable to ship to Canada as it will be stopped on the border. I'm so frustrated and angry i could just scream, but i dont want to weaken my adrenals any further. deep breath!!!!!!!!!! another deep brath!!!!! OK ..........so we'll just continue the present adrenal support and hope for the best as i try to get my adrenals on track so i can switch to armour.
ps. for you in the US.........dont wish for govenment run health care....its failing us badly.........
im now going to make an apointment to see an osteopathic doc in michigan to get the help i need. im thinking of moving to the us while im at it. maybe i could meet some nice american man and move there..... dont mind me im slowly losing it!
my story ....readers digest version....
i have been diagnosed as hypo 6 years ago. my doctor refuses to see me as having anything wrong with me other than my hypo, depression and very high cholesterol (i tried statins and had bad side effects, so ive given up on them).
an endo i saw basically agreed and said i should continue taking my synthroid each monrning and that i did not have addisons disease. big help.
so, 3 years ago i saw a naturopathic doc who diagnosed me as having adrenal weakness (i also have primary ovarian failure and have since learned that pof can be a precursor to adrenal failure/addisons disease) and recommended various things such as diet, vitamins, exercise, breathing techniques for stress as well as adrenal supplenment.
the adrenals supplement made a big difference. though i was still unable to work due to streess, i was able to function well enough to care for my own needs.
recently i found the stop the thyroid madness webstie and it explained that isocort can be purchased otc in the usa for those who dont have access to cortef from a doctor. it also appeared that isocort might be more potent and effective than the present porcine glandular adrenal supplenment im on. ive also learned that the synthroid im on may not be helping matters where my health, both thyroid and adreanl are concerned and the importance of cotisol to convert t4 to t3, etc.
so i proceeded to order the isocrot from the usa and the company called me yesterday to say they could not ship it to canada as it would be stopped at the border due to our customs/excise laws.
so, back to the ole drawing board.
i live on the usa border so im now considering going to an osteopathic doc in michigan who will hopefully get the picture and see what is truly wrong with me and give me a small dose of cortef to build up my adrenals and after weeks or months (however long it takes to build them up) begin the process of switching me from synthroid to armour. the **** book explains in detail the process involved here.
this way i will not be breaking any laws as cortef is legal in canada, but i havent been successful in lassooing a doctor and convincing him/her that i need it desperately. i must be living in the 'quack' zone where docs are conventional docs are concerned. (Excepting my wonderful naturopathic doc who ahs done more for me than all the others put together...but she too has to go by canadian rules and is unable to give me cortef or armour or isocort....)
there you are..........my story.......abridged.
thanks for asking.
i need a rest now after typing all this....im whipped.
cosette, I feel for you, Doc Direnfeld will help, have you read the book adrenal fatigue, the disease of the 21 century? by denis wilson, a must read... are you taking vitamin B5? how about some rhodiola or ashwaganda? tell me your naturopath's name. Are you tired in the a.m. when you get up? have you had a 4 point cortisoll test? YOu need a holistic doc, the rest are junk.... there are afew in T.O. but they're hard to find. please keep in touch....Call the doc up and tell his secretary your story,,, he is VERY busy....cath
Dearest Cathy,
i so appreciate your response........im nearly in tears as i sit here, but i dont like to cry as it makes me feel worse.....so ive resorted to, like a wacky lady, laugh instead as laughter builds the adrenals.
first, i found out about dr. direnfeld 2 months ago thru the **** website and i called their office and he was booked until end of oct. and not taking new patients. i was crushed!!!!!!! he was my only hope. so i sent him a letter explaining my situation via snail mail and asked if he could at the very least put me on a waiting list. he sounds amazing. i read all the posts on top doc list and i was so excited, but my hopes were dashed. dr. drienfeld has not responseded to my letter yet ..... and i wait......
yes, in 2005 i found out about the book adrenal fatigue on the net and bought it right away and all the way thru the book it was me, me, me, me, me, me (except the part about periods as im on continuous hormones and dont bleed since 2001). it wsa hard reading at the time as i wasnt on glandular adrenal, but i battled thru it and read it over months later when the glandular adrenals kicked in.........however now it looks like my glandular adrenals just arent strong enough to help me. im not familiar with rhodiola or ashwaganda....what can you tell me about them?
btw, i updated my profile so you could see where im from.....500 miles from TO, but if need be ill hop on a bus and get down there, but i wont unless i know for sure he'll help me, someone like dr. direnfeld, as ive been to 3 other endos who have not helped me over the years....im learning that endos are not the be al end all where the endocrine system is concerned.....
my naturopathic doc is amazing, but she is limited as to what she can do for me given shes not a medical doc. her name is Terry Lutes, ND.
yes, yes, yes, my mornings are as you say....soooooo tired.....and my sleep is getting poorer and poorer all the time. sleep for 1 to 2 hours, up for 1 to 2 hours, etc, etc, etc and can barely nap in the day.
have been seriously watching my diet for the last 3 years.....no caffeine, no sugar (or extremely very little), good proteins, proper breakfast with good protein, lots of magnesium, b-complex, vit c.....Terry gave me the run down back in 2005 about exercise, diet, deep breaths for stress, vitamins,etc.....she's a smart cookie
im basically waiting in my apartment for my adrenals to get so bad that i will be addisons.........and the worst part is the answer is out there clear as a bell, but my nurse practitioner thinks i need a psychiatrist..... and you, being a canadian know the doctor shortage is bad in our country so im basically stuck with her and she wont even refer me to an endo anymore. shes basically given up on me. i feel like im in the twilight zone over here. the sad part is im a bilingual, intelligent person with a beautiful singing voice (folks keep telling me that.......some have told me i sound like ann murray) with so much to give and love to help the elderly and visit them in nursing homes, etc. and here i sit pining away and fading away.
im thankful for my church family who help me with groceries as i have no family in the city.
if it wasnt for my faith in Jesus, things would be worse.
(thanks for bearing with me in this long post....with typos, no caps for the most part as im so tired.......)i also keep editing as i keep for getting stuff....brain fog............
Cathy,
i've been doing some research on the net about ashwaganda and adrenals and i noticed it is also referred to as indian ginseng. this sent a red flag up for me as i had a bad experience before i went on the glandular adrenal.
in august 2005, when all the pieces were coming together that a had adrenal fatigue and my family doc wasnt helping me, i headed to my favourtie health food store and picked up a product called adrenasense. well, after a week or so, i was surprised as to how this product had helped me, but it soon sent me into what i now term as 'overdrive'.....not only did i have more energy, but my brain wouldn't quit and it was almost like i was ocd or something.....it was scary.... so i quit taking it and later discovered that the ginseng in this adrenal vegetarian product must have had a bad reaction with my anti -depressant. so for now i'm kinda leary of trying anything like that again. It was in October of 2005 that i discovered the porcine glandular adrenal product that ive been on now for almost 3 yers. theres no question it has helped me greatly, but when i had bouts of stress it felt like i was hit by a mac truck and i now wonder whether i should have been put on armour a few months after i started the glandular adrenal and then i wouldnt be in quite the fix im in now. i didnt have the book 'stop the thyroid madness' at the time and im sure we can all agree that having an illness which causes brain fog, poor concentration, poor memory, etc. makes it that much harder to put work through all this info and make sense of it all.
That's why having a good doctor is so vital!! and i've yet to find that one, but i have not given up even tho ive hit a wall after another wall after another wall......although ive never gone horsebackriding, i often use the phrase 'ive been back on the horse so many times, ive lost count'.
I must say again that i am soooooo thankful for this website where we can find like minds and folks who really and truly know what we're going thru and offer comfort like no one else can. God bless you all!!!!!
Hey Cathy,
You're a real sweetie!! btw, cossette is my board name. Les Miserables is one of my fav movies and one of the characters is named cossette and i took a real liking to that name. My real name is Rachel.
Thanks for all your info!!!!!!!!!!!!! And for giving me the tip re Dr. Direnfeld. i did try licorice last fall and it did help some....i felt my brain fog and depression lifting some, but without the care of a physician, i wasn't sure how much to take and for how long to take it and i had read on the net that it is only to be taken for a shot period, not long term. I haven't been seeing my naturopath for 3 years now as it was getting too expensive to see her on a regular basis and she can't give me armour or cortef, so i think i was just getting partially treated and tho it wasn't her fault, i was left freustarted.
I'm not familair with WTS, but will look into it. Speaking of temps, my ND had me take my BBT's back in 2005 for a week or amonth (can't remember) and they were low and fluctuating which seems to confirm that it is both my thyroid and adrenals. For a while there my BBT was around 95 degrees F. ive since learned that its no wonder i woudl wear 3 to 4layers to bed at night with wool socks (I have quite a supply of wool socks that i wear from about October to May) and head band and duvet cover as i was pretty close to being hypothermic.
Since being on the glandular adrenal my BBT ranges from about 96.5 to 97.5.
My brother and his fam. live in Waterdown, so i may be able to stay there for a while and commute to Scarb. to see Dr. Direnfeld. Believe me, i'll find a way somehow.
Thank you ever so much! God bless you for all your help!!!
Thanks again Cathy for all your help. If this works out i don't know how i will ever be able to thank you. i've been on a wild goose chase for several years with this, being diagnosed as hypo in 2002 after being sick for years even before that and here we are in 2008...well, let's hope that's all behind me now. On Tues. I'll call Dr. Philip Niemi DO in Sault Ste. Marie Michigan and go see him. Now i forgot to mention to you that i had seen a different DO in Sault Ste. Marie, michigan back in Sept.2004, and he seemed to be a bit clueless about thyroid intricacies. It wasn't his area of expertise to be sure and I too sure didn't have the wealth of info i now have, but figured my .088 mg synthroid was too low and i wasn't getting anywhere with my Nurse pract. and so i asked this DO if he would please increase my synthroid to .100 mg. and he agreed. Two months later he did the following tests:
T3 uptake 26.5 (24.6 - 35.8)
T4 (doesn't say free, so i'm guessing its total) 16.20 (4.50 - 12.00)high
TSH (we all know that was a total waste of time) 0.019 (0.490 - 4.670)
(I'm guessing the money i spent on these labs would have been better spent on a nice bottle of wine or a new outfit)
Anyway, he kept me on .1 mg and gave me a years supply. It still didn't help the way i'd hoped it would.
So, anyway, this is a different DO, and i'm going to i ask him to:
1- change my synthroid to armour - beginning with 1 grain
2- follow up with the free T3 and free T4 tests 2 months later. (i'll make sure to NOT take my armour the morning of the blood work and try to get in to the lab by 8:30 a.m.- hope the international bridge isn't too busy....i'll leave early)
Do you think that's a good course of action to start with? I don't know how soon i'll be able to see him and i'm guessing he will have limited knowledge on thyroid too, so i'm leaving my options open as to Dr. Direnfeld. I'll let you know how i make out on Tues. and i'll take it from there.
Also, Cathy i have so many files and paperwork on my situation the past 6 years, i just don't know what i should bring to the DO besides my list of symptoms. Any suggestions? I want to be well prepared before i walk into his office. Should i bring the **** book with me? I just ordered the Mark Starr book, but it may not get here before the appointment.
Well, you have made my day, big time, Cathy!!!!
Have a great evening!!!
Your message was loaded, I hope I can remember everything.....
I don't understand much other than FT3 and FT4, this is the amounts of hormone that are unbound and free and usable, so those are the lab tests that most doctors use and understand.... so I can't comment on the ones you gave me....
Yes, your plan sounds good. Take everything with you and put it in a briefcase or backpack, etc. but I highly doubt he willl need much of your past labs..... yes, the book will be good, but because it's not written by a doc, he may not like it, but show it to him anyway. When you get and read the mark starr book, definitely show it to him (I know Doc direnfeld has it) Make sure you stick as much as possible to the **** method of dosing, starting low and quickly increasing so as not to prolong your hypo symptoms, it will take afew weeks to notice a change in symptoms. If you feel too hot, sweaty, nervous, diahreaa etc. you know you've gone too high. **** says you should be in the upper 2/3 of the range... when you take your bloods at 8:30 a.m before you take your meds...please keep me in touch, if you want, you can stock up on armour when your're there, I hear it's not too expensive... please keep in touch.... Remember what I told you about topping up your FT4 with synthroid once your FT3 is nice and high.... then you may need only.088mg of synthroid once a day to do this. The girl I met on the net said she feels really good with a high FT3 and a mid range FT4... says she has plenty of energy... etc. please keep in touch. Because your adrenals are shot and your hormones are not produced by your own body, you may require an amount of dessicated thyroid that is more or less than most people.... so you need to go by your symptoms and your blood levels... everyone is different.... I'm still not stable and I've been working on this for years...cath
So sorry to hear you're not stable yet Cathy! I hope and pray you do get stable soon.
Thanks again for going the extra mile for me. I really appreciate it.
I'm sipping on some bedtime tea. Sure hope it works....the last week i've had between 3 and 5 hours per night.....im surprised i can still function at all.
Hey Cathy,
Just remembered that the **** book emphasizes the importance of looking after the adrenals first before dealing with treating the thyroid and i've read that over and over from others on this board. Without adequate cortisol, the T3 will just pool in the blood and not be properly utilized......so, i'm just wondering if switching to armour right now is the right course of action if my cortisol is low. i'm thinking the saliva test should be first.
Then i'll try to get into the doc in Sault Michigan to get on a small dose of cortef which i will be gradually increasing to build up the adrenals. The **** book explains all this in detail. You mgiht want to get a copy.
At the very least if none of this works out i'll try to get my nurse pract. to up my synthroid.
Hi cossette,
I think that the endocrine system doesn't work well untill everything is balanced: if the adrenals aren't working, the thyroid is stressed, If the thyroid doesn't work well, the adrenals are stressed, so my opinion is to work on one thing, and then as quickly as possible, work on the other, ideally, I'd work on both.... For now, you can up your dose of synthroid so that it's about .125 mg or .150 mg which will normalize you more... if you get your blood tested on this larger amount, let me know..the results.... in the meantime, you could double your dose of .075 (which is so low I don't know how you can survive on it) you will be getting .150 mg .... that's a good amount. Watch for symptoms.... within that 6 week period. I wouldn't wait too long to up your dose....
let me know and keep in touch... I have read wilsons book, I have it here at home, and I've read every single page of ****. I may order the book, but my hubby is pressuring me to go out and get a job right now.... he gives me very little money....:-(
cath
Thanks for that reminder Cathy that the adrenals and thyroid do work together and the way i'm feeling right now i know my synthroid is definitely too low, however, i'm a little nervous about doubling it to .150 mg or even
.125 mg as my T4 showed as being over the range the last time i was on .100 mg which was back in 2004.
I'm really hoping i can get into this doc in Michigan to start raising the synthroid, strengthen the adrenals and eventually get on Armour by the year is out. Again your help is much appreciated.
Cossette,
T3 uptake 26.5 (24.6 - 35.8)
T4 (doesn't say free, so i'm guessing its total) 16.20 (4.50 - 12.00)high THis is looking like a total T4 value and range. Free T4s tend to be in the .8-1.8 range these days. Are you on birth control pills? Estrogen, progesterone, or any steriodal supplement? Any of these and more will effect your thyroglogulibe binding capabilities and artificially inflate your TOTAL T4 values. Total T4 values are indirect measures of your actual T4 and should be taken with a grain of salt.
TSH (we all know that was a total waste of time) 0.019 (0.490 - 4.670) If your pituitary gland is functioning appropriately then you are hyperthyroid. This indicates you either have too much T4 or T3 or both in your system.
Anyway, he kept me on .1 mg and gave me a years supply. It still didn't help the way i'd hoped it would.
You need further testing in my opinion before you change or increase your dosage of T4. You need to get your FREE T4 and FREE T3 run. Depending on the levels and balance between your FTs then additional adrenal/pituitary testing may be warrented. Did you have your adrenals checked before starting your adrenal supplement? What exactly is in you adrenal supplement? It is always best to have the blood work run first before trying to self-medicate. You can cause a lot of issues if you take too much of a good thing. Too much iodine can be toxic.. same with many other minerals and such. in the case of adrenal support supplements.. depending on the ingredients you may be causing your adrenals to shut down or over work. All in all we have to be careful when medicating and augmenting our endocrine system.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
I was diagnosed by a naturopathic doc 3 years ago and was taking the adrenal supplement under her advisement. She was a God-send after years of run-around from my family doc and endos who casually brushed me off and didn't do the correct tests. However, this glandular supplement, tho it gave me back my life, doesn't appear to be potent enough anymore and so that's why i had looked into getting the isocort while look for a decent doc.
My primary ovarian failure is often a precursor to adrenal failure as well. That's another piece of the puzzle that i have to deal with.
I agree with you that it may not be wise to radically boost my synthroid at this point.
My naturopathic doc, tho she has been a tremendous blessing, has her hands tied as to how much she can do for me as she's not a medical doctor and cannot prescribe cortef or armour. She recommended i go to the nearest Osteopathic doc who happens to be just across the border in Sault Ste. Marie Michigan. So that's where i'm headed next. I'll be insisting that he do Free T3 and Free T4.
Thanks too for pointing out the T4 test results being Total t4 and not free t4. I wasn't sure about that. Makes perfect sense.
cossete,
I agree with mkg, you really need the FT3 and FT4 readings before you do anything... is there no way you can get this done? What about a walk in clinic? They do this in Canada, so I don't know what the problem is.... you can cut your pill with a pill cutter and try that. You're certainly not going to kill yourself going a little higher...cath
cossete,
I agree with mkg, you really need the FT3 and FT4 readings before you do anything... is there no way you can get this done? What about a walk in clinic? They do this in Canada, so I don't know what the problem is.... you can cut your pill with a pill cutter and try that. You're certainly not going to kill yourself going a little higher...cath
Iwish it was that easy to get ft3 and ft4 when you live in a city of less than 80,000 which is 200 miles from the nearest city. This city i live in has a severe doctor shortage. The nurse pract. I have at present took me off a very long waiting list in 2002 after my doctor of 19 years left town to work elsewhere. at that point i had been without a doctor for 14 months. Our one and only endo in the city is a 'pardontheexpression' dweed. my doctor reluctantly referred me to him when i insisted that i still wasnt well after being on synthroid for 2 years... i soon discovered that his knowledge was very limited where thyroid was concerned. he said that adrenals and thyroid are not interrelated.....:ro lleyes: i don't have a husband to drive me here and yonder to a doctor. i'm on my own. i don't want pity, but i just want to explain my point of view. i am going for a tsh test tomorrow morning with my nurse pract. i know that tsh is useless, but its all ive got right now until i get my appointment to the doctor in our twin city in Michigan right across the border. i'm hoping it will reveal that i'm still very hypo. i cant drive anymore, i can barely get around in my appartment. lets hope and pray that this doc in Sault Michigan gets it right.
Also, i still very much appreciate your help Cathy!! and the reason i haven't used a pill cutter and increased my meds yet is i didnt want it to screw up the labs i will be getting in the very near future.
Thanks again to you both. Very much appreciated!!!!!
I'm not very happy to hear all this sad news.... my dear, can I send you my cortefs via the mail? I just wonder if I did that, would you take them? Please just double your thyroid meds.... you will feel better I'm sure, in afew weeks....the TSH is no help to you.... you're justing wasting good blood!
cath
dont mind me im slowly losing it!
big help.
