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LIVEN2BPINK's Photo LIVEN2BPINK Posts: 4,156
1/23/11 1:53 P

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I am on VIT D2 50,000 units per week and take VIT D3 2000 units per day. One of my sayings had been the shades are down..which is how I felt, now the shades are up or half mast :)
:) I don't like fish...can tolerate tiliapia but not on a regular basis!
Medically I have slipped through the cracks, but I have found my way. Luckily I have an ENDO doctor that listens. I don't sit on the pity pot or blame anyone for my well being, although I would have a few choice words to a few doctors that I had...but only in that I would want them to learn to help others in my situation.
I keep much of what I have been going through to myself. My family is very supportive, but don't think they understand it. The most successful I have been is eating a balanced carb/protein ( diabetic diet), low carb, low fat, low sodium for best results in how I feel and losing weight. Now with meds I don't need to be so restrictive which is nice but the more on track the better.
Much of what I have learned and shared with my ENDO has benefited my well being. We all need to be active in our health maintenance. That is how I was put on combination meds for my thyroid.

What a lazy Sunday!
:) Deb

In giving we receive...so give to yourself.


Be the Pursuer of Your Own Happiness

There will come a time when you believe everything is finished. Yet that will be the beginning."


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PHROSTBYTE Posts: 25
1/23/11 11:58 A

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My doctor recently attended a seminar, and he said that if you're low on vitamin D, you may have to take up to 3000 IU's 3 days a week to replenish your stores.
I googled it, and sure enough, it's something a lot of ME sufferers actually do, and they find it helps them.

It also explains why I, despite eating fatty fish like salmon(which I hate). never got my levels adequately up. I am trying the vitamin D thing now, and I have to admit, it's the first winter in years where I haven't completely hibernated.

I did get metformin for my PCOS in 2006 - I asked to be taken off it, as it seemingly impaired my vision, I kept seeing tons of tiny black dots in front of my eyes whilst on it.
The metformin made me extra crashy. Or that's how I recall it, in any case. And the irony was that I was on a NutriSystem-diet thing, with low-GI food delivered weekly, and I passed out even after 3 grapes.

I don't think any of us are whiners. I think we are having issues with out thyroid and autoimmune or endocrine systems which are hard to diagnose and fix. And I think the more we talk, the more we may take back to our doctors and specialists to see if they make anything of the data we provide.

And just to put it out there:
I've done the alternative medicine thing. I tried raw for a year, and it had no major effect on the crashes. My skin glowed, tho ;-) I've tried a veriety of diets, chiropractors, naturopaths, et al.
I've also been to "stop the thyroid madness" - and even though I understand the site owner's rage, anger and general ill disposition towards the medical profession, I disagree with some of her tenets.

I do, however, believe in empirical evidence, and NOT giving up, it's what's been working for me the last year :-)

/P

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LIVEN2BPINK's Photo LIVEN2BPINK Posts: 4,156
1/23/11 11:35 A

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Hi,
I suspected the thyroid might be part of the vitamin delima, but also the Metformin ( for insulin resistance) that I am on affects B12 absorbtion, as well as the NAFL ( fatty liver) hinders the absorbtion of VIT D. I was taking 1000mg 2x per day of the B12 and doing well. My labs came back super and she said to cut back to 1x per day. After this last crash I have gone to taking 2500 sublingual daily which has helped get me back on track. Still the fatigue is a problem. Online I read that the byetta injections ( for blood sugar levels) and metformin cause tiredness and fatigue. I am nowhere near the energetic person I was...it's been over 2 years now.
No more sleepathons, but naps and fatigue....we could go on and on I'm sure. Would be nice to have a thread for this problem....I'm not a whiner but perhaps sharing can help others.
deb

In giving we receive...so give to yourself.


Be the Pursuer of Your Own Happiness

There will come a time when you believe everything is finished. Yet that will be the beginning."


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PHROSTBYTE Posts: 25
1/23/11 10:45 A

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Hi Liven2BPink :-)

I have no diabetes 2 diagnose, even though I am currently in a risk zone for it, with my BMI.
My endocrinologist tells me that when the thyroid isn't working well, it prohibits your body in absorbing the vitamins it needs, like calcium, vitamin B, vitamin c, iron, selenium, manganese, vitamin D and zinc.
I am low in all of them, which is why I am on supplements.
I'm not seeing any major improvements as of yet, though.

I love and dislike the cortisone I am on - I love it because I have a crutch, I can *do* stuff and I feel good.
I dislike it because it may be harmful to your adrenals in the long run, and it pudges you out. and yes, it does raise your blood sugar, but I work hard to keep it under 6 mmol/L
I managed to work out thrice this week, which I havent done in a long time, but I did pay for it with 14 hr sleepathons ;-)
i'm a big fan of excergaming, it allows me to feel my way back into gettig fit again, so I am going to try for three or four workouts next week.

If we have the same symptoms, and I have never had cancer, maybe it's not the chemo?

I do think I know exactly what you mean with the bits and pieces, though. I can have really really good days too, and I act like normal, walk, work, work out, and then BAM! down I crash.

If there are more of us crashprones around, maybe we should get together and create a thread or post with crash symptoms? Maybe it'd help us help ourselves if we had something experienced in several sufferers with the same issue?

/P

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LIVEN2BPINK's Photo LIVEN2BPINK Posts: 4,156
1/23/11 10:27 A

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Hello,
The thyroid issue, I was doing great and had increased my exercise and started Crashing with extreme fatigue. Thought right off it was thyroid, but family doctor said it was fine. Suffered for another year and went to a specialist. It took a year to get my numbers down....and I am feeling better. The crashes continued and found I was low on some vitamins. This has helped. I am also type2 diabetic, had good control and then it went all over the place. Am now on injections which has helped. Could your blood sugar levels be elevated from the steroid use? I still feel tired, and can crash. But I am more active than a year ago, can work out again. When I reach the overdoing part...I crash. I have thought that perhaps it could be something more, like the adrenal issue. Seems like something more is going on.
I am still not my old self, only in bits and pieces.
I also have POCS, had breast cancer 7 years ago...think the chemo might have caused some of my problems.

Good Luck to us all, Debbie

In giving we receive...so give to yourself.


Be the Pursuer of Your Own Happiness

There will come a time when you believe everything is finished. Yet that will be the beginning."


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PHROSTBYTE Posts: 25
1/14/11 7:44 P

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Thanks for the support, it's very appreciated :-)

US2BAGODESS: I actually went the other way around:

I was diagnosed with PCOS in 1995, Hypothyroid in 2000, so I've had this a while.
My regular physician told me a few years that this was all in my head, stop being such a neurotic, but I've since changed healthcare providers and reported ex-physician to my local authorities for his downright lethally sh**ty attitude. (I reside in Norway, we have a patient ombudsman taking care of stuff like this)

I've been symptomatic at the very least since 2005.
It escalated over Christmas last year, and I have been on sickleave since.

As of August last year, I've been in the care of a specialist in thyroid and endocrine disorders, and he is the one who started taking cortisol tests when I told him his initial hypothyroid treatment regime just wasn't working.
I am undiagnosed as to what it is as of yet - I responded well to morning cortisol a few times after the initial low values, and I also tested ok on the synACTHen/ACTH test.
I also tested within range on aldosterone, progesterone, and testosterone and anti-21hydrolxylase (I actually didn't have much a21HO at all)

I have been on cortisone since Christmas, and I am noticing that I am less tired, it helps my "fog" and I am managing to remember things now, but the fatigue and crashes remain.
I also can't go outside in winter without feeling as if there is a film on my lungs - resulting in a hacking, ugly cough - the cortisone helps that too.

What is compound cortisone? I don't think I have heard of that before ?

I really, really recognise what you are saying re: the body shutting down - it's what it felt like in November for me, and I also recognise what you are saying about spending time on the couch - personally I commuted between bed and the computer, as it at least felt as if I was doing *something,* you know?

As for reverse t3 - I will ask for a test - I started taking T3 last April, and I have to admit I am not noticing all that much of an effect, but I have been blaming that on my general state.
I have been wondering whether it's pituitary failure on my end, or something on the APS axis, as the pituitary controls both the flow to the thyroid and elsewhere.

I'm good with the picture you paint - I have no patience for candy-coating, and I do find that a good, informed, can-do attitude today beats tomorrow's rainbow any day.

/P

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USE2BAGODDESS's Photo USE2BAGODDESS Posts: 2,703
1/14/11 7:13 P

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By the time I finally got diagnosed with Adrenal Fatigue I had permanently crashed. I took a saliva test (it is more accurate than blood tests for cortisol). The normal daily range for cortisol is from 5-10. My cortisol level at 8:30 am was .1 that's right less than 1. 8:15 am I felt somewhat ok, but 8:30 am I was dead asleep. At 3pm it was .2 and then at 6pm was 2.4 half of what it should have been.

I've read it takes roughly 3 yrs to recover from adrenal fatigue and its not always a guarantee. From AF I developed hypothyroidism (which they treated first and it made me worse) then I developed Chronic Fatigue Syndrome and then Fibromyalgia. It is like dominoes falling and knocking new ones down. They are related but each is separate and adds new symptoms.

After unbelievable amounts of research I decided to take compounded cortisol and stay away from pharmaceutical cortisol. It can shut down your adrenal glands permanently as can the compounded stuff if you take too high a dose. I went to the best and closest compounding pharmacy and asked to speak to one of the pharmacists. I asked for a recommendation for a good doctor.

I go to a hormone specialist. He helps me with my thyroid (T3) as well as cortisol. When my adrenal glands quit working I became low on testosterone, progesterone, estrogen, and aldosterone. All these hormones are produced by the adrenal glands. Basically what happens it that adrenaline and cortisol are life necessary hormones, the others are not. I supplement with all of these hormones which does help me to feel better and it puts less stress on my adrenal glands.

Have you been tested for Reverse T3 Dominance?

It is all part of the body slowly shutting itself down in order to preserve itself. The first thing that is impared is the thyroid gland by the production of reverse t3. I will post websites to read.

I spent 8 months of 2008 on the couch sleeping all day. At best, I had one day a week I could get up and do one errand. Go to the store, or see the doctor and then I was crashed out. A 45 minute visit at my brothers house required a 3 hr nap to recover. It was horrible. It comes and goes now. I will have good spells and then other times where I'm almost completely home bound.

Please feel free to contact me if you have any questions I can help with. I'm sorry if I painted such a dark picture. I didn't mean to but it is very serious and can be life altering. Finding the best help available as soon as possible is critical. I had no one to help me and had to do everything on my own.

www.stopthethyroidmadness.com/adrena
l-
info/


www.naturalnews.com/019339.html

www.canaryclub.org/home-test-kits/ou
r-
test-kits/469.html


I order an advanced Saliva test about every 6 months and test my hormone levels.

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LAURPUD's Photo LAURPUD Posts: 1,322
1/14/11 5:36 P

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I don't have any answers for your extreme symptoms, all I have is support
emoticon emoticon

Let's be nice to OURSELVES

A house without birds is, like, quiet


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PHROSTBYTE Posts: 25
1/14/11 8:49 A

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Hi,

I am Hypothyroid (and have PCOS), and I was wondering - has anyone else had issues with their cortisol (adrenal) values being all over the place when taking bloodtests?
I've had anything from 42 mmol/L (dangerously low) to 483 mmol/L(normal) during a 2 month period.

I was also wondering if anyone else "crashes" after eating - I am not talking 30 minute dinner nap, I am talking 4-5 hrs of basically sleeping off your breakfast, lunch, dinner, whatever in addition to sleeping at night after eating a meal (low or high GI)
Or just crashing - I went for a walk yesterday and promptly needed 12 hrs of sleep when I got home.
(Stuff like this works wonders for my dieting and exercise routines, let me tell you ;-))

I am being treated by a good endocrinologist, but it's taking time to sort me out, and I was wondering whether anyone else had experienced anything similar.


I am taking both synthetic t4 and T3, in addition to cortisone, extra iron,calcium, selenium, vitamin C and B - trust me, i am currently a walking, talking vitamin supply store ;-)

Grateful for any insights :-)

/P

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