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Just Got Diagnosed With Fibromyalgia


mythreesuns

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georgie Enthusiast

Armetta, The tests are on www.stopthethyroidmadness.com but what is really important is your TEMP and SYMPTOMS. If your Dr doesn't recognise this you need to find a new Dr that does. Synthroid has a reputation for not working. Armour does. Once you make the change you will get well. It can be a rocky road for a while as you get your dose right - and this is where you need a good Dr. But - if you don't - STTM people can help a lot. They have treated 1000s like you. Told them where to find a good Dr, what this means and that. It saved my life.

Did you know that the blood tests for Thyroid were only invented in the 70s. Same time as Synthroid. They tested them on male medical students. Now they are wondering if women covert Thyroid meds differently to men ( DUH).For 30 years people have suffered as Drs are treating patients according to these blood tests. Now .... it seems that blood tests may not be accurate. It was Broda Barnes that predicted this prior to the 70s. His book predicted this world wide calamity of Drs not understanding Thyroid, using inferior synthetic medicines, and treating patients as blobs of ink on a piece of paper. The temps I have seen here this morning are among the worst I have seen.....

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angelina2975 Newbie

I am brand new to this site and I can't even tell you how relieved I am to find people that understand what i'm going through (and I wouldn't wish this on my worst enemy!). I've had a borderline (by test standards) hypothyroid for my whole life (severe constipation, dry skin, eczema, easy weight gain/difficult loss, thinning hair, cold cold feet/hands .low body temp). To combat it I used to keep a very healthy diet (I am not a celiac but do have a wheat allergy) of non processed foods, lots of veggies/fruits and fish (sometimes chicken). I've also kept my minerals in check ~ extra selenium, coq10, tyrosine, zinc. But the one thing that I did to combat the weight gain was a very intense exercise program. After about 10 years of constantly going going going, my adrenals went!!! I was recently diagnosed with adrenal fatigue by an alternative M.D. who also put me on armour. All of my hormones were bottoming out; low estrogens,progesterone, testosterone, pregnenolone. My adrenal test showed sufficient amounts of DHEA, but lower cortisol. I don't know what my cortisol levels were when this all started (this doc was the 3rd one I went to). My hypo symptoms were all intensified with the addition to a few new ones, such as crazy allergic reactions to just about everything, and extreme, sudden weight gain (30lbs in 6weeks) in addition, the mood swings made me a different person (one that flew off the handle and would cry at the drop of a hat). I was told to take and adrenal supp in addition to the Armour (I used Isocort); I stopped using the isocort after a few months and continued with the Armour ~ I still haven't lost a lb even though I am low cal most of the time. I still get dead tired if I go to the gym for a cardio workout (usually low intensity on the eliptical) and I also do some yoga a few times/week. I am now going to an internist, who also does alternative. She is putting me on homeopathic supplements for adrenal and thyroid and decreasing my armour dose (from 180mg/day to 120mg/day). I was wondering if anyone else has had results with homeopathy. As you can all understand this is very frustrating, I went to bed a thin, healthy person one night and woke up 30lbs heavier and sick and tired. I am also going for acupuncture treatments.

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CarlaB Enthusiast

Hi Angelina. I battle with the weight the other way, even though my thyroid is low, I struggle to keep the weight on. I guess with adrenal problems it can go either way. I read a book called Tired of Being Tired by Jesse Lynn Hanley, MD. It was very good and had a lot of suggestions. I'm not working with homeopathic meds, but I am using supplements, diet, light exercise (no cardio!!), sauna therapy, and lots of rest. I'm making progress each day.

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angelina2975 Newbie
Hi Angelina. I battle with the weight the other way, even though my thyroid is low, I struggle to keep the weight on. I guess with adrenal problems it can go either way. I read a book called Tired of Being Tired by Jesse Lynn Hanley, MD. It was very good and had a lot of suggestions. I'm not working with homeopathic meds, but I am using supplements, diet, light exercise (no cardio!!), sauna therapy, and lots of rest. I'm making progress each day.

Thanks Carla!!

How long have you been dealing with adrenal issues? I have read that adrenals can cause weight gain and weight loss. From what I've seen is that when the adrenals are in the first stage of exhaustion, excess cortisol is pumped out and this could cause weight gain and loss is in the next stage when there isn't enough. I think my gain is also due to hormonal imbalances due to adrenal. My estrogens have been high low high low! :blink: so you can just imagine what that is doing!

Thanks for the book suggestion, I'll definitely have to check it out. If you haven't read the Schwarzbein principle, that is good also. She deals with damaged metabolisms in general but does mention adrenal issues.

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loraleena Contributor

Do you think I have adrenal also? My temps go up and down so much. I sent you a personal e-mail as well. I actually had been feeling great a couple years ago and then got sick twice and never recovered. I found out I was gluten intolerant and that slowly made me better and better. Until, this summer. I feel like hell most of the time, but have some good days. My brain fog is back big time. I also have bad chemical sensitivities. Not only am I cold intolerant, but, I get overheated easily to. That does not seem like a thyroid symptom. What do you think?

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CarlaB Enthusiast
Do you think I have adrenal also? My temps go up and down so much. I sent you a personal e-mail as well. I actually had been feeling great a couple years ago and then got sick twice and never recovered. I found out I was gluten intolerant and that slowly made me better and better. Until, this summer. I feel like hell most of the time, but have some good days. My brain fog is back big time. I also have bad chemical sensitivities. Not only am I cold intolerant, but, I get overheated easily to. That does not seem like a thyroid symptom. What do you think?

There's a pretty extensive written test in the book I mentioned. Even if you didn't want to purchase the book, you could sit at Border's or Barnes and Noble and take the test.

Thanks Carla!!

How long have you been dealing with adrenal issues? I have read that adrenals can cause weight gain and weight loss. From what I've seen is that when the adrenals are in the first stage of exhaustion, excess cortisol is pumped out and this could cause weight gain and loss is in the next stage when there isn't enough. I think my gain is also due to hormonal imbalances due to adrenal. My estrogens have been high low high low! :blink: so you can just imagine what that is doing!

Thanks for the book suggestion, I'll definitely have to check it out. If you haven't read the Schwarzbein principle, that is good also. She deals with damaged metabolisms in general but does mention adrenal issues.

This is the fourth time in my life I have had this so bad that I can't get out of bed. This time, though, I know what it is so it's going to be the last!!! My doc diagnosed me two months ago, and I can do much more than I could do then, but I still have a long way to go to be completely better. They say it takes a year or more to recover from this.

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Ursa Major Collaborator

My temperatures seem to be going down, and they were already way too low. Yesterday morning it was only 34.9 degrees Celsius (94.82 Fahrenheit), and even in the afternoon wouldn't go above 35.6 C (96.08 F). Previously it would always be 35.3 C (95.94 F) in the morning, and by the afternoon it would be 36.3 C (97.34 F). I measured many times yesterday and the day before, and this morning, and this is what is happening consistently. It can't be a good thing that my temps are getting lower, right?

I guess right now I am doing everything I am doing 'in cold blood'. :blink:

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CarlaB Enthusiast

Ursula, it could be part of the healing cycle, don't you think? My doctor said that as the system balances itself back out there can be discomfort. From what I've read, your body compensates when one system isn't doing it's job, then as it decompensates, there can be discomfort. Let's just hope it's that. You might mention it to your doctor.

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georgie Enthusiast

Ursula, Absolutely. Its a sign that your Thyroid is screaming for help and probably adrenal function as well. Have you read 'Safe Uses of Cortisol' by Jeffries. Low dose HC is safe and necessary to heal Thyroid. Armour is the superior med.

It can't be a good thing that my temps are getting lower, right?

Lora leena, Yes. Sounds like you need to get Adrenals checked and treated and then think of Armour. Have answered your PM.

Do you think I have adrenal also? My temps go up and down so much.

Angelina, Is your Dr blind ? You are HYPO and need MORE Armour not less !! I was borderline Hypo too all my life and exhausted adrenal function. Isocort is too mild for people like us. You need cortsione to treat Adrenal function before you can get the Armour to work and get into your cells. Most people seem best on 20 - 25 mg HC, and 3- 5 grains of Armour. Its an indiv thing - so you titrate the dose slowly until your temps are stable and SYMPTOMS disappear. Blood tests are simply NOT ACCURATE. Read 'Safe Ues of Cortisol' if you have concerns re HC. Also read www.stopthethyroidmadness.com and go to link that says 'Mistakes Patients Make'.

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angelina2975 Newbie
Angelina, Is your Dr blind ? You are HYPO and need MORE Armour not less !! I was borderline Hypo too all my life and exhausted adrenal function. Isocort is too mild for people like us. You need cortsione to treat Adrenal function before you can get the Armour to work and get into your cells. Most people seem best on 20 - 25 mg HC, and 3- 5 grains of Armour. Its an indiv thing - so you titrate the dose slowly until your temps are stable and SYMPTOMS disappear. Blood tests are simply NOT ACCURATE. Read 'Safe Ues of Cortisol' if you have concerns re HC. Also read www.stopthethyroidmadness.com and go to link that says 'Mistakes Patients Make'.

Thanks Georgie; I will have to ask my doc about the HC, but I have a feeling she won't go for it. What kind of dr. are you treated by? I was at 3grains of Armour and I didn't see any difference, that is why she pushed it back down to 2 grains. I know everyone usually doesn't go according to blood tests, but my TSH is low, below normal range and my t4 is about 2x's above the range; so when she suggested lowering it I didn't question it at all. I've just been through soo much in the past 8 months that I guess I'm getting sick of researching and questioning everything.

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georgie Enthusiast

My Dr is a normal GP but also a naturopath. She also has Thyroid disease herself and read and researched Thyroid extensively. Its possible that you will need more than 3 grains. I am at 3 1/2 grains now, and need more I think. And I know some that take 4 , 5 1/2, ...even 11 grains of Armour. However, you need to understand adrenal function and low dose cortisone therapy. Or at least your Dr does :) The HC allows the Armour to get into the cells and work. The best test for adrenals is saliva testing. Its hard to find a Dr that understands all this. www.armourthyroid.com has Drs that use Armour. Ring first and ask if they test for and support adrenal insufficiency. Have you had B12 tested ? Pernicous Anaemia can co exist with Gluten issues. I have all 3 :( That can make you feel pretty yukky too.

Was the T4 test for Free T4 ? TSH should be as close to 0 as possible with Hashis Thyroid - to supress the Antibodies attack.

Thanks Georgie; I will have to ask my doc about the HC, but I have a feeling she won't go for it. What kind of dr. are you treated by? I was at 3grains of Armour and I didn't see any difference, that is why she pushed it back down to 2 grains.
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chgomom Enthusiast

Have you had a bone density scan to check for osteopenia or something similar??

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angelina2975 Newbie

Georgie, the test was free t4 and also free t3; the TSH was real close to 0.. I don't have it in front of me so I can't tell you the exact measurement. I do know that t3 was just a point or two above the range; t4 was about 2x's/above.

What kind if any test have you had for your adrenals. I've had the cortisol/dhea saliva testing which was ordered by my previous now retired doc. The new one accepted it and said yes, even before she looked it over it was apparent from my symptoms that it is adrenal. I am thinking maybe if I asked for another specific test she would be more motivated for some aggresive treatment. Right now she is putting me on homeopathic meds for thyroid and adrenal and also an adrenal formula with some bovine adrenal in it (very minimal). I know that adrenals take some time to repair, but I would rather get treatment that is going to work quicker rather than slower. I do make sure I take supps. that support the adrenals, i.e., extra C, pantethine etc. and I just think that by now I should be feeling a bit more like my old self or at least seeing more results (some weight loss would be fabulous or maybe hormones being back in normal levels!)

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mythreesuns Contributor

I keep opening this post thinking there was a response about fibromyalgia only to discover more discussion about adrenals and thyroid. :P

Anyway, how do I find a doctor who would be willing to talk to me about all this stuff? I love my GP, and he will refer me to anyone I ask, and since you have all stimulated my very active imagination ;) now I think I want to see a doctor who knows about adrenals/thyroid to see if I have a problem with it or not.

So, how do I know if a doctor knows about all this stuff without going to him/her and finding out the hard way that they don't?

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angelina2975 Newbie

awww..Toni, I'm sorry, I think we all just went off on a tangent. I re read all the posts and I have a question for you, were you ever 100% diagnosed with Fibro?? Quite a few months ago that is what the docs thought I had. First it was a regular GP, then my chiropractor, then at first my alternative md add FM to the increasingly long list of things I might have based on symptoms. I was in so much pain, I was trying to find relief everywhere (going to the chiro 3x's/week with no results) and it turned out to be due to my adrenals and thyroid, but more so the adrenals because I didn't have enough of the necessary hormones to combat the pain. It may not apply to you, but I figured I'd share my info anyway. Since I've been on armour and going for weekly accupuncture the pain is a thing of the past. Still dealing with a few other symptoms but I am sure they'll work their way out sooner or later <_<

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mythreesuns Contributor
awww..Toni, I'm sorry, I think we all just went off on a tangent.

No, don't apologize! You all got me thinking. I was 100% diagnosed with FM by a rheumatologist (after all the blood tests ruled everything else out) but like you said, with my temps running low (for years!) I think I ought to get the adrenals and thyroid checked out as well.

My GP didn't diagnose it, but after he ruled out everything he could think of he referred me to the rheummy, one he knew was familiar with FM so I think it was in the back of his mind that that's what it might be.

My chiro thinks FM is bogus and told me just to focus on the food issues because that's prolly where it all comes from anyway.

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CarlaB Enthusiast

Toni, most of the time conventional doctors only look at your adrenals as being a problem when they're actually diseased. I'm going to an MD who also practices holistic medicine. I know Georgie is sold on cortisone supplementation, and no doubt it's working for her, but I'm not sure it's the best route for everyone. I take glandular thyroid and glandular adrenal -- plus the dietary, exercise, and rest recommendations of my doctor, who diagnosed me with hair analysis.

It takes time to get the adrenals working again. Google adrenal fatigue and adrenal burnout and you will find a lot of information. Also, go to Barnes and Noble or Borders and flip through the test in Tired of Being Tired by Jesse Lynn Hanley, M.D. -- it will give you a good idea if your adrenals are giving you a problem.

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georgie Enthusiast

Sorry Toni if we appear to be drifting here but know that most cases of Fibro are related to Thyroid and poor adrenal function. The STTM site has cured 1000s in the last 5 years by using Armour and low dose HC therapy. I understand the folks here going 'yuk' re HC but its often necessary. Natural adrenal support may work for mild cases but usually by the time people get CFS and Fibro - they have been Hypo for a long time, and are severely Adrenal damaged. In the old days this didn't happen as people got Armour at the first sign of trouble. Drs use to dx Thyroid very easily back then. But now - they look at blood tests too much and get confused which often makes the patient suffer for many years until they are at the point of collapse. I went another 9 years after my Fibro before dx as Hypo. And had been dx as Hypo 20 years before that. 29 years w/out meds ... I used natural cures along the way - they didn't work for me. If I had my life over again I would have started my treatment regime 29 years ago, and would have avoided CFS, Fibro and infertlity. Too late to go back - but hope to 'spread the word'. 'Safe Uses of Cortisol' by Dr Jeffries is a reference book used by many new thinking Drs. Broda Barnes etc.

And Hashis Thyroid is Autoimmune like Celiac and once you have one autoimmune conditiion you can get more ... Don't just let a Dr say your Thyroid test was 'normal' Get the paperwork. Post it to the STTM site or some other Thyroid forums. See if your Dr or lab report is 2006 trained or using training from 1970......

No, don't apologize! You all got me thinking.
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celiac sucks Newbie
I keep opening this post thinking there was a response about fibromyalgia only to discover more discussion about adrenals and thyroid. :P

Anyway, how do I find a doctor who would be willing to talk to me about all this stuff? I love my GP, and he will refer me to anyone I ask, and since you have all stimulated my very active imagination ;) now I think I want to see a doctor who knows about adrenals/thyroid to see if I have a problem with it or not.

So, how do I know if a doctor knows about all this stuff without going to him/her and finding out the hard way that they don't?

Toni, an Endroconoligst would the doctor you want to go to if you suspect adrenal or thyroid problems. An Endroconoligist specializes in the endrcoine system which includes both the adrenal and thyroid glands. They mainly see diabetics but they also see patients with Addison's disease (adrenal insufficiency). Good Luck!

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georgie Enthusiast

These guys are the WORST for dx Thyroid and Adrenal. Can only see black and white blobs instead of patients. Most people I know have horror stories of 1000s of cases of bad Endos that kept them sick for another 10, 20 years until they stumbled across a decent Dr. This was the case with me personally. Would have cured my Fibro 10 years earlier except for that twit of an Endo that told me my Thyroid was 'normal.

Toni, an Endroconoligst would the doctor you want to go to if you suspect adrenal or thyroid problems.
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celiac sucks Newbie
These guys are the WORST for dx Thyroid and Adrenal. Can only see black and white blobs instead of patients. Most people I know have horror stories of 1000s of cases of bad Endos that kept them sick for another 10, 20 years until they stumbled across a decent Dr. This was the case with me personally. Would have cured my Fibro 10 years earlier except for that twit of an Endo that told me my Thyroid was 'normal.

I'm sorry you had bad luck with an endro. I have had extremely good luck with mine, I gues it all depends on your doctor.

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Lymetoo Contributor
Anyway, how do I find a doctor who would be willing to talk to me about all this stuff? I love my GP, and he will refer me to anyone I ask, and since you have all stimulated my very active imagination ;) now I think I want to see a doctor who knows about adrenals/thyroid to see if I have a problem with it or not.

So, how do I know if a doctor knows about all this stuff without going to him/her and finding out the hard way that they don't?

I have a great dr in Missouri who handles hormone testing [more than just male, female hormones] and knows alot about the thyroid as well.

Not all endocrinologists handle this kind of thing, though they SHOULD. Most of them focus on diabetics....so call ahead to see what their focus is.

-----------

Is "prolly" a word?? :unsure:

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mythreesuns Contributor
Is "prolly" a word?? :unsure:

ROFLMAO!!!!

It's my own cyber-speak version of "probably" because it's so long to type. LOL :P

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angelina2975 Newbie

In response to the question of what kind of doc and whether endo's are good are bad: I went to the so called "top" endocrinologist in my area a few years back (when I was exhibiting much of the same symptoms as know, which are "textbook" adrenal. All he tested was my thyroid and then when it was borderline, even though I had every single symptom under the sun (and not mild forms of the symptoms, I'm talking serious constipation, weight gain, ice cube feet in the summer!!! dry flaking skin..etc. etc. etc.) he brushed me off. Granted, this is the case of a bad doc, but this time around I didn't find any more success with endo's. I eventually found a great Alternative MD, who unfortunately is retiring, so now I am seeing an Internist/GP who does alternative practices. Some key words I look for with docs is alternative or bio identical hormone replacement (because my hormones bottomed out so bad then in the meantime while my adrenals get restored I need to be on hormone therapy. Its not easy finding a good doc, but the most important thing you can do for yourself is research research research!! My fave place is the library and I find out so much info on line too; this way you can at least tell if a doc is good for you by how he responds to your symptoms.

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Lymetoo Contributor
ROFLMAO!!!!

It's my own cyber-speak version of "probably" because it's so long to type. LOL :P

It's a pain to type!!

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