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Old 07-31-2014, 08:55 AM   #1
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Doctors and endocrinologist have no answers for me

Hi, I am new here.

I'm hoping to get some answers as my doctors and endocrinologists don’t seem to know what to do with me despite me feeling so ill.

Here are my blood test results from November 2011 to July 2014:

November 2011

TSH – 5.2 (0.2-4.2)
Free T4 – 16.8 (12-22)

January 2012

TSH – 2.2 (0.2-4.2)

January 2013

TSH – 0.69 (0.2-4.2)
Thyroid Autoantibodies – 84 kIU/L

May 2013

TSH – 22 (0.2-4.2)
Free T4 – 10.9 (10-22)
(Started on Levothyroxine at 25mcg, then 50 and then 75mcg)

August 2013

TSH – 4 (0.2-4.2)

(Levothyroxine increased to 125mcg)

November 2013

TSH – 4.3 (0.2-4.2)
Free T4 – 15.3 (10-22)

(Stopped Levothyroxine because I had worsening hypothyroid symptoms and my Free T3 started to drop)

Free T3 – 5.5 (4.1-6.8)

(The Free T3 didn’t drop as much I had expected because I had only been off the Levothyroxine for a little under 3 weeks)

December 2013

TSH – 4.6 (0.2-4.2)
Free T4 – 15.6 (10-22)
Anti TPO antibodies – 41 kIU/L (0-34, negative range)

January 2014

TSH – 2.7 (0.2-4.2)

February 2014

TSH – 3.6 (0.2-4.2)
(Restarted Levothyroxine at 50mcg for 3 weeks and then 100mcg)

March 2014

TSH – 1.87 (0.2-4.2)
Free T3 – 4 (4.1-6.8)
Free T4 – 16.8 (12-22)
Anti-TPO antibodies – 33.5 (0-34, negative range)
Anti-TG antibodies – 103.5 (0-115, negative range)

(Stopped Levothyroxine again because of worsening hypothyroid symptoms)

May 2014 (Private blood test)

TSH – 5.01 (0.2-4.2)
Free T4 – 18.9 (12-22)
Free T3 – 5.2 (3.9-6.7)

June 2014

TSH – 4.5 (0.2-4.2)
Free T4 – 19.3 (12-22)
Free T3 – 4.6 (4.1-6.8)

(I took the Levothyroxine once at this time because I knew I had to take it, just didn’t want the worsening hypothyroid symptoms)

July 2014

TSH – 2.5 (0.2-4.2)
Free T4 – 15.7 (12-22)

July 2014 (new doctor)

TSH – 0.36 (0.2-4.2)

Symptoms when on the Levothyroxine:

- Constipation
- Cold intolerance
- Cramps
- Heavy periods
- Weight gain (weight rose from 7.3 stone/46kg to 8.4 stone/53kg when on it.
- Fatigue
- Headaches
- Migraines
- Hair loss

Symptoms when off the Levothyroxine:

- Heat intolerance
- Weight loss
- Tremors

Why does my FT3 drop when I take the Levothyroxine and I get an increase in what I can only assume are hyperthyroid symptoms when I am off the thyroid medication?
And my endocrinologist says I have Hashimoto’s but my antibodies are now not in range from the positive range they were in December 2013 yet my thyroid hormones are quite low, I don’t understand?

Thanks
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Old 07-31-2014, 11:52 AM   #2
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I am not sure what you expect if doctors "don't seem to know." All I can do is comment based on my own experience with this--I have Hashimoto's.

First of all, I don't know why anyone would be advised to 'go off' thyroid replacement hormones (Levothyroxine) if symptoms were increasing. Didn't your doctor suggest changing to another brand? I take Synthroid now, but I took Levoxyl for many years, and I do well on both. But when my pharmacist persuaded me to take Levothyroxine, I had a return of symptoms. I don't tolerate Levothyroxine--and that's not unusual. All brands are not the same. So normally, if the patient doesn't experience relief with one form of T4, the doctor will try another. Going on and off would just complicate everything.

As for your antibodies 'not now in range,' that's not unusual. They tend to be stronger at some times than others--which is why a diagnosis is often difficult from blood tests alone.

Finally, if you have Hashi's, many people will go back and forth for a while between hyper and hypo--and that could be why you were experiencing 'symptoms.'

Everything I just wrote is what every good thyroid doctor knows, and I find the handling of your case extremely puzzling.
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Old 08-01-2014, 03:41 AM   #3
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I am not sure what you expect if doctors "don't seem to know." All I can do is comment based on my own experience with this--I have Hashimoto's.

First of all, I don't know why anyone would be advised to 'go off' thyroid replacement hormones (Levothyroxine) if symptoms were increasing. Didn't your doctor suggest changing to another brand? I take Synthroid now, but I took Levoxyl for many years, and I do well on both. But when my pharmacist persuaded me to take Levothyroxine, I had a return of symptoms. I don't tolerate Levothyroxine--and that's not unusual. All brands are not the same. So normally, if the patient doesn't experience relief with one form of T4, the doctor will try another. Going on and off would just complicate everything.

As for your antibodies 'not now in range,' that's not unusual. They tend to be stronger at some times than others--which is why a diagnosis is often difficult from blood tests alone.

Finally, if you have Hashi's, many people will go back and forth for a while between hyper and hypo--and that could be why you were experiencing 'symptoms.'

Everything I just wrote is what every good thyroid doctor knows, and I find the handling of your case extremely puzzling.
Thanks for your reply. My doctor didn't recommend another thyroid medication to me, no. I was told to come off the Levothyroxine firstly by a nutritionist and secondly by my previous doctor.
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Old 08-01-2014, 05:31 AM   #4
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I would never take medical advice from a nutritionist!

And I would stop seeing any doctor who told me to come off thyroid Rx completely.

As I mentioned, it is fairly common to have problems with one or more of the thyroid brands, and it's standard for doctors to switch a patient who continues to have symptoms to another brand.

Keep in mind that this is a lifetime situation--especially if you have Hashi's. So you would do well to find a good thyroid doctor ASAP. I've been with my current endo for almost 10 years, and we have a great relationship--partners in my thyroid care. For example, a couple of times he was reluctant to increase my dosage based on the lab numbers, but he trusted my report of the symptoms I was experiencing, and it turned out that the increase was the right thing to do. When you don't have a long-term relationship with a doctor, they tend to rely totally on the lab numbers, and with thyroid, the labs don't tell the whole story.

You really need a good thyroid doctor when dealing with a chronic disease like Hashimoto's.
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Old 08-01-2014, 07:25 PM   #5
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I'm wondering if maybe you would benefit from the addition of some T3 medication, such as Cytomel. If you Hashis then maybe you aren't converting well, which seems to be common. That should help to bring up the FT3 levels.
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Old 08-13-2014, 03:30 PM   #6
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I would never take medical advice from a nutritionist!

And I would stop seeing any doctor who told me to come off thyroid Rx completely.

As I mentioned, it is fairly common to have problems with one or more of the thyroid brands, and it's standard for doctors to switch a patient who continues to have symptoms to another brand.

Keep in mind that this is a lifetime situation--especially if you have Hashi's. So you would do well to find a good thyroid doctor ASAP. I've been with my current endo for almost 10 years, and we have a great relationship--partners in my thyroid care. For example, a couple of times he was reluctant to increase my dosage based on the lab numbers, but he trusted my report of the symptoms I was experiencing, and it turned out that the increase was the right thing to do. When you don't have a long-term relationship with a doctor, they tend to rely totally on the lab numbers, and with thyroid, the labs don't tell the whole story.

You really need a good thyroid doctor when dealing with a chronic disease like Hashimoto's.
Thanks, well, my thyroid doctor has been suggesting some pretty strange stuff I should do.

She told me to go on contraception and she didn't want to do a gastroscopy because she didn't want to put me through an unpleasant procedure.

The doctors I see at my practice are reluctant to declare me unfit for work with my symptoms and one doctor says all her other patients who take levo feel much better and have full time jobs. I don't know why I am any different.
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Old 08-13-2014, 03:38 PM   #7
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I'm wondering if maybe you would benefit from the addition of some T3 medication, such as Cytomel. If you Hashis then maybe you aren't converting well, which seems to be common. That should help to bring up the FT3 levels.
Thanks, I don't think my doctor will prescribe me T3 and my endo did not put me on a trial of T3 because she needed a lab sample of my FT3 which she couldn't do because her labs ranges keep adjusting and may skew my results. But her labs are the same ones I used for the private blood tests!

I thought that I no longer have Hashi's if my antibodies are out of range... They are only just out of range however.
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Old 08-13-2014, 07:51 PM   #8
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As I understand it, if you have Hashis, you have Hashis. It flares though, so sometimes you will have antibodies, and sometimes you won't (or not as many).

Have you ever had your reverse t3 tested? That was my issue. My t3 and t4 were "in range" but barely. My reverse t3 was high though so I didn't have t3 for my cells to use. Taking a t4 med on top of a reverse t3 problem will just compound it because it gives you more t4 to convert to the wrong thing.

I think I'd try a new doctor. Like Leo said, any good thyroid doctor knows this stuff, but there are too few good thyroid doctors out there.
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Old 08-14-2014, 03:25 AM   #9
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Yes, if you've been diagnosed with Hashi's--you have it. The antibodies wax and wane. In fact, my own Hashi's was diagnosed via a biopsy because my blood level of antibodies has never been sufficient for diagnosis.

As to the FT3 test, what you report your doctor said makes no sense at all. My endo told me that the 'free' tests are more expensive, but that's the only issue involved.

But there's no reason to consider T3 Rx since you don't seem to be at all established on T4. You should ask for Synthroid, since it's the brand (not generic) and the most reliable.

No one is going to declare you 'unfit for work' based on a hypothyroid diagnosis (if that's your goal) because there are millions of us, all functioning normally with supplemental hormones.
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Old 08-14-2014, 04:22 PM   #10
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As I understand it, if you have Hashis, you have Hashis. It flares though, so sometimes you will have antibodies, and sometimes you won't (or not as many).

Have you ever had your reverse t3 tested? That was my issue. My t3 and t4 were "in range" but barely. My reverse t3 was high though so I didn't have t3 for my cells to use. Taking a t4 med on top of a reverse t3 problem will just compound it because it gives you more t4 to convert to the wrong thing.

I think I'd try a new doctor. Like Leo said, any good thyroid doctor knows this stuff, but there are too few good thyroid doctors out there.
Thanks. No I've never had reverse T3 tested. I'll look at getting a new doctor, I guess.
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Old 08-14-2014, 04:26 PM   #11
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Yes, if you've been diagnosed with Hashi's--you have it. The antibodies wax and wane. In fact, my own Hashi's was diagnosed via a biopsy because my blood level of antibodies has never been sufficient for diagnosis.

As to the FT3 test, what you report your doctor said makes no sense at all. My endo told me that the 'free' tests are more expensive, but that's the only issue involved.

But there's no reason to consider T3 Rx since you don't seem to be at all established on T4. You should ask for Synthroid, since it's the brand (not generic) and the most reliable.

No one is going to declare you 'unfit for work' based on a hypothyroid diagnosis (if that's your goal) because there are millions of us, all functioning normally with supplemental hormones.
I can ask for the Synthroid, I don't know if it's available in the UK. But if I say not the generic one then maybe I'll get somewhere.

I have other outstanding issues as well as my thyroid. I am iron deficient and barely eating anything.
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Old 08-14-2014, 04:27 PM   #12
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And no, a doctor declaring me unfit for work is not my goal, I hardly feel able to function most days, am underweight and iron deficient.
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Old 08-15-2014, 04:38 AM   #13
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I see I'm on the wrong site and apparently forcing my doctors to declare me unfit for work. This is not so, I have had fellow thyroid friends telling me to not return to work due to how ill they've said I look and I will not stand for being told I am faking it.
I wish you all well and thank you for your advice, but don't feel inclined to visit this site again.
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Old 08-15-2014, 05:18 AM   #14
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Jaycee-

I'm sorry that you were offended, but you were the one who mentioned that doctors were unwilling to declare you unfit for work. I was not accusing you of 'faking' anything, just commenting that in the USA (I didn't realize you were in the UK) hypothyroidism would never be considered a condition that made one unfit for work. I was just surprised that this issue was raised, but you were the one you mentioned it.

What I DID question was your medical care--again, my perspective is the U.S. Although we have terrible thyroid care in general, it's fairly common for people to be unable to tolerate a specific brand of hormone (like Levothyroxine), and no doctor would simply take the person off Rx hormones but would try another type.

In fact, it's commonly assumed that once you're taking Rx thyroid hormones, it's for life. You stated that doctors have 'no answers' for you, and that's rather disturbing because there are obvious remedies for the issues you presented. But I'm unfamiliar with UK healthcare.
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Old 08-16-2014, 10:22 AM   #15
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Sorry you feel that way Jaycee but I agree with Leo in that you brought it up. I don't think any of the posts alluded to you faking anything.
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Old 08-23-2014, 01:33 PM   #16
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Jaycee, I too got worse on Levo and Synthroid as well so I understand your predicament a bit.
I hope you can get the the help you need.

you may be dealing with adrenal fatigue as well which when treated helps the thyroid to improve.

Last edited by maybell; 08-23-2014 at 01:36 PM..
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Old 09-11-2014, 02:41 PM   #17
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What type of lab tests do they do for adrenal fatigue?
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Old 09-25-2014, 09:26 PM   #18
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What type of lab tests do they do for adrenal fatigue?

Saliva testing is the best/most accurate. They give you a kit with 4 vials and you have to fill each vial with spit at very specific times of day. Directions come in the kit. You either return the kit or mail it directly to the lab, depending on your doctors preference.

Doctors that order a single blood test for adrenals, don't know squat about treating adrenals.
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Old 09-26-2014, 07:39 AM   #19
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[Quote}
Doctors that order a single blood test for adrenals, don't know squat about treating adrenals.[/QUOTE]

Completely agree!!
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Old 09-26-2014, 07:52 AM   #20
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I'm not sure that I'd agree, and I'd hate to have someone second-guessing their doctor based on this thread.

I'm hypothyroid and have a superb endo (board certified and trained at a major medical center). I've been with him for over ten years and received excellent care. When I was having some other 'vague' symptoms, he checked adrenals (and some other glands) via blood test.

[My tests were negative, and my symptoms resolved without treatment.]

There's a lot of 'adrenal fatigue' hype on the internet that's not recognized by mainstream medicine, and I'm always wary of such issues. I realize that mainstream medicine can be flawed--but the internet can also spawn medical information that isn't accurate, too.
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Old 09-26-2014, 01:31 PM   #21
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There are many highly respected MD's (Dr. John Lee, Dr. Lam and the MD who I see as well) who agree that a one time blood test is not enough information to diagnose Adrenal Fatigue with.

Perhaps you are confusing Addison's Disease with Adrenal Fatigue? I had stage 4 adrenal fatigue and have since healed. Our cortisol levels are changing throughout the day so having your blood taken once during a 24 period isn't going to be comprehensive enough to determine the state of your adrenals.
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Old 09-26-2014, 01:53 PM   #22
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I don't doubt that some doctors diagnose 'adrenal fatigue,' but my point was that doctors who deal solely with adrenal insufficiency (which IS diagnosed via blood test) are not the terrible people being portrayed here.

THIS is from the Mayo Clinic website:

Is there such a thing as adrenal fatigue?

Answers from Todd B. Nippoldt, M.D.
Adrenal fatigue is a term applied to a collection of nonspecific symptoms, such as body aches, fatigue, nervousness, sleep disturbances and digestive problems. The term often shows up in popular health books and on alternative medicine websites, but it isn't an accepted medical diagnosis.

Your adrenal glands produce a variety of hormones that are essential to life. The medical term adrenal insufficiency (Addison's disease) refers to inadequate production of one or more of these hormones as a result of an underlying disease.

Signs and symptoms of adrenal insufficiency may include:

Fatigue
Body aches
Unexplained weight loss
Low blood pressure
Lightheadedness
Loss of body hair
Skin discoloration (hyperpigmentation)
Adrenal insufficiency can be diagnosed by blood tests and special stimulation tests that show inadequate levels of adrenal hormones.

Proponents of the adrenal fatigue diagnosis claim this is a mild form of adrenal insufficiency caused by chronic stress. The unproven theory behind adrenal fatigue is that your adrenal glands are unable to keep pace with the demands of perpetual fight-or-flight arousal. As a result, they can't produce quite enough of the hormones you need to feel good. Existing blood tests, according to this theory, aren't sensitive enough to detect such a small decline in adrenal function — but your body is.

It's frustrating to have persistent symptoms your doctor can't readily explain. But accepting a medically unrecognized diagnosis from an unqualified practitioner could be worse. Unproven remedies for so-called adrenal fatigue may leave you feeling sicker, while the real cause — such as depression or fibromyalgia — continues to take its toll.
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Old 09-26-2014, 02:43 PM   #23
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The Mayo Clinic article is referring to Addison's disease. There is a "gold standard" blood test used to determine Addison's but not Adrenal Fatigue.
In Adrenal Fatigue Cortisol is still being produced but it might be low at night, high in the morning etc. which is the opposite of how it is supposed to be.
This can cause a whole heap of symptoms and also pulls on the thyroid gland and makes it work harder which can result in hypothyroidism.
I recently had a friend come back from the Mayo Clinic. She was there a week, went through extensive testing and came home with what has since proven to be a misdiagnoses. The whole family is in an uproar over how inept the Mayo Clinic is now.
My point being that I think it is important to keep an open mind regarding medicine and since I have had experience with Adrenal Fatigue and have healed from it I feel qualified to share about my experience with Saliva Testing vs. blood testing.
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Old 09-26-2014, 03:40 PM   #24
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And I appreciate your sharing your experience, Maybell. That's the purpose of these forums.

But the Mayo Clinic article is referring to Addison's precisely because of THIS comment about 'adrenal fatigue' it isn't an accepted medical diagnosis

I've only posted this because I wanted people to understand that medical professionals are divided on this issue, and that it's unfair to claim that doctors who test blood (for a degree of insufficiency that may not yet be Addison's) should not be portrayed as not knowing 'squat.'

And it's not only the Mayo Clinic (I used their site because it was simply presented). Most of the mainstream medical sites similarly ignore 'adrenal fatigue.'
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Old 09-26-2014, 05:44 PM   #25
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All good Leo!

I have to say though that Fibromyalgia didn't used to be widely accepted; nor was Atkins

I don't set much stock in what is widely accepted or not because if I did I would have never gone on Thyroid replacement (My tsh was at a 5 which at the time was considered okay) and would have just gone along with my Endo but I kept looking for answers.

It was actually a healer who diagnosed me with hypo (before going to the Endo for blood work) and a homeopathic MD who finally was able to help me get regulated. As we all know now a TSH of 5 is considered HYPO haha

When I had adrenal fatigue, I had to search for answers there as well and I feel really grateful to some brilliant physicians who have actually brought adrenal fatigue into awareness.

Because of them I was able to get proper treatment and heal the disturbing symptoms I was having that traditional medicine wasn't able to help me with.

I think Nutritionists, Homeopaths, MDs, Healers etc. are all valuable and I would never discredit one over the other as each perspective is valuable.
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Old 09-27-2014, 12:41 AM   #26
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Yes, I would never discredit a medical practitioner easily, but that's exactly what previous posts were doing by saying that any doctor who did not do saliva testing didn't 'know squat.'

Good medical care is a complex issue, as you know from your thyroid experience. There are poor practitioners in both mainstream and alternative medicine, but all any of us can do is share our own experiences and allowing other posters to decide for themselves whether to question their medical care.
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Old 09-27-2014, 12:42 PM   #27
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In Adrenal Fatigue Cortisol is still being produced but it might be low at night, high in the morning etc. which is the opposite of how it is supposed to be.
This is actually normal. Cortisol is low at night and high in the morning. Which some people believe can explain why most heart attacks happen in the early morning hours, when cortisol is spiking.

Might I also ask, how has your adrenal fatigue been treated? How was it diagnosed exactly?




To all:

I am so intrigued by everything in this thread for numerous reasons. I started as a lay person who was convinced I had hypothyroidism. Started low dose Synthroid as a teenager, but saw a DO who switched me to Armour. I have been on Armour since I was 17 (now 31). During that time I was on this board and read all about natural thyroid hormone, adrenal fatigue, yeast overgrowth etc. and got very caught up in natural medicine. I ended up going to medical school, am now board certified in Internal Medicine, and will be an endocrinologist in 9 months (currently in my fellowship).

Part of me understands all the hype stating doctors don't really understand thyroid disease, etc., mostly because I know MDs are against Armour/dessicate thyroid hormone, but I feel so much better on it. However, a lot of them are coming around to natural thyroid hormone replacement after hearing how quality of life is better (despite no major difference in labs).

I also get very angry reading on here how much endocrinologists are "idiots", don't understand thyroids or adrenals. Really, guys? I am doing my fellowship at a major academic US institution where there are thyroid and adrenal experts everywhere. This is their entire life. And to say because they don't subscribe to salivary cortisol testing to test a subclinical form of adrenal insufficiency they are total idiots really enrages me.

I appreciate the comments Leo has been making, regarding the complexity of medical care and how not to discredit practitioners so easily because they aren't gaga for adrenal fatigue syndrome.

I understand how traditional dogma shouldn't be considered as "gold", but neither should homeopathic dogma.
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Old 09-27-2014, 01:59 PM   #28
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Originally Posted by maybell
"In Adrenal Fatigue Cortisol is still being produced but it might be low at night, high in the morning etc. which is the opposite of how it is supposed to be"


This is actually normal. Cortisol is low at night and high in the morning. Which some people believe can explain why most heart attacks happen in the early morning hours, when cortisol is spiking.

You are absolutely correct, sorry I was having a dyslexic moment

I was diagnosed by my doctor who is an MD and I had Cortisol issues throughout all times of the day which a saliva test revealed.
I took Isocort for some time and I still take ashwaghada, rhiodiola and licorice for it. I feel 100% better most of the time and my cortisol levels are normal.

I have watched 2 people around me struggle with Adrenal issues and go to Endocrinologists to have their blood taken and be told that they are fine.
Once they do the saliva test and get a more comprehensive view they have both gotten proper treatment and feel totally cured.


I haven't read through the entire thread lately (it was started a while ago) but don't remember anyone calling endocrinologists idiots.
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