# Thyroid diagnosis has ruined my life



## HyperHypo (May 22, 2011)

Hello everyone. I'm new here and could really use some help in understanding what is causing my problems. I appologise for my fist post being so long. I'm a 59 year old male.

About 9 years ago I felt great. I had lots of energy and stamina. I rarely went to the doctor and then only for things like the flu. I got a new insurance plan at work that allowed a free annual physical and I decide to take advantage of it. After giving me the first complete physical exam I had ever had, the doctor said that I had hypothyroidism and prescribed 50 mcg per day of Levothyroxine and started having me come back every 90 days for blood test for my thyroid. Over the span of a couple of years I went from a dosage of 50 mcg to 200 mcg. As the the dosage increased so did the hell that I now suffer with every day.

Although I'm being treated for hypothyroidism I have the symptoms of hyperthyroidism. Moderate physical exertion, like walking on a warm summer day, causes me to start feeling like I'm overheating and I start sweating profusely, especially from my head, and sometimes I feel weak like like I have exercised enough to be exhausted. Sometimes when not exercising I experience heart palpitations and pounding at times. (The doctor has sent me for three or four treadmill stress tests that showed I have a strong heart) I'm very emotional and have mood swings that go from periods of depression to periods of anger toward family members over trivial things. Sometimes I feel like crying for no apparent reason.

I have discussed all my symptoms with my doctor many times and he always tells me that my lab readings are where they should be and he says that is what he must go by to treat my condition. He says he can't treat me according to the way I feel. About a year ago I decided to prove to myself that the Levothyroxine was causing the problem. I stopped taking the Levothyroxine for six months. As the medication got out of my system I started to feel better. At the end of the six months I felt great with the exception of sometimes feeling a little sluggish. The sweating profusely went away and I felt normal again.

When I returned to the doctor for testing after being off the medication for six months my doctor hit the ceiling. He said that I was going to die if I didn't stay on my medicine. He agreed to drop the dosage down to 175 mcg but said he wouldn't go any lower based on my test results. I went back on the meds and started feeling terrible again. I asked him to send me to an endocrinologist which he did. After a huge battery of test the endo agreed with my doctors dosage and sent me back home.

If I could just get rid of the sweating so I could exercise normally I could live with the rest of the symptoms. I'm thinking of going off the medicine completely and suffering the consequences or trying to find and alternative to the Levothyroxine. I have ordered some raw bovine thyroid supplement to try.

I know that the first question will be, "what are your lab results", which I can't answer. I go get my blood drawn and I don't hear from the doctor until the next visit if the tests are good. He has mention tsh and t4 levels but he doesn't give me a copy of the results. All he says is all the levels are in range. Any help of comments would be appreciated.


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## Andros (Aug 26, 2009)

HyperHypo said:


> Hello everyone. I'm new here and could really use some help in understanding what is causing my problems. I appologise for my fist post being so long. I'm a 59 year old male.
> 
> About 9 years ago I felt great. I had lots of energy and stamina. I rarely went to the doctor and then only for things like the flu. I got a new insurance plan at work that allowed a free annual physical and I decide to take advantage of it. After giving me the first complete physical exam I had ever had, the doctor said that I had hypothyroidism and prescribed 50 mcg per day of Levothyroxine and started having me come back every 90 days for blood test for my thyroid. Over the span of a couple of years I went from a dosage of 50 mcg to 200 mcg. As the the dosage increased so did the hell that I now suffer with every day.
> 
> ...


Oh, my gosh! So good to see you and glad you made it in. Sorry for any previous inconvenience!










Oh, my goodness!! Has this doctor never done any antibodies' tests? You see, there are blocking, binding and stimulating antibodies. One keeps the other down, another comes along and pops it up again and so on. This seriously skews the regular thyroid panel of TSH, FREE T3 and FREE T4.

If you can get copies of your most recent labs and post the results and the ranges, we probably can get a better idea. We must have the ranges as different labs use different ranges.

You do sound hyper to me. And this test will prove it out or not.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.

http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Please understand that w/ the above test you should absolutely NO TSI period EVEN if it is below the range. The range is just to detect movement either up or down.

And these other tests are highly recommended as well.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

If your doctor won't run these tests; #1, consider finding a new doctor and #2, you can see if you have this lab in your area and get your own tests.

HealthCheckUSA

http://www.healthcheckusa.com/

Most of all, you need the TSI and if you can provide your most recent numbers (results and ranges), we should be pick up on something.

I must encourage you to be proactive with your medical care. You are entitled to copies of your labs. Only the most recent labs should suffice so that should not be a huge hassle. You can call and ask them to mail or stop by in person.

In the future take a self-addressed, stamped envelope with you so they can mail your copy to you promptly w/each lab.

When the doctor continually increases your medication and you are still sick, one would think that the doctor would wonder why this is! Clearly this doctor is not helping you.


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## HyperHypo (May 22, 2011)

Thanks for all the information. It is nice to find someone who seems to care about the way I feel instead of just about getting the numbers right.

When I said TSI what I meant to type was TSH. I apologize for that mistake. I will follow all the links you provided. I have never heard about the antibodies and will certainly read up about it. I will try to get a copy of my last test results and post it here.

Can you give me any info on Natural Sources - Raw Thyroid. I was wondering if it supplies T3 and if it is worth trying. Could it replace Levothyroxine or supplement it to relieve some of my symptoms? Many people on amazon.com swear that it has helped them but maybe they don't have the same problems that I do. Any comments are welcomed and appreciated.


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## Andros (Aug 26, 2009)

HyperHypo said:


> Thanks for all the information. It is nice to find someone who seems to care about the way I feel instead of just about getting the numbers right.
> 
> When I said TSI what I meant to type was TSH. I apologize for that mistake. I will follow all the links you provided. I have never heard about the antibodies and will certainly read up about it. I will try to get a copy of my last test results and post it here.
> 
> Can you give me any info on Natural Sources - Raw Thyroid. I was wondering if it supplies T3 and if it is worth trying. Could it replace Levothyroxine or supplement it to relieve some of my symptoms? Many people on amazon.com swear that it has helped them but maybe they don't have the same problems that I do. Any comments are welcomed and appreciated.


There is Armour, NatureThroid and WestThroid in the U.S. of A. They are dessicated porcine. Then there is Thyroid® mfg. by Erfa in Canada. Porcine as well.

I like the Armour. Have been on it for years.

I do believe that you should have that TSI test and some others before embarking upon a journey w/T3. It could land you in the hospital. I am not entirely certain you are hypo and you don't seem to be certain of it either.


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## lainey (Aug 26, 2010)

You really need to see what your TSH values are, and the Free T4 and T3 levels. These measure the amount of thyroid hormone in your system.

These are necessary to really evaluate your situation.

As for the raw thyroid, the symptoms you have are more from having TOO MUCH medication, rather than not enough. ADDING MORE medication to the mix by taking the raw thyroid is not likely to improve your situation.

Find out the lab values, and then you will be able to make decisions.


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## Lovlkn (Dec 20, 2009)

HyperHypo,

You need to get copies of your lab results -the doctor has to give them to you and going forward have them drop a copy into the mail after you are tested. You need to insist they run the FT-4 and FT-3 which shows current active thyroid hormones in your system. Never ever dose by TSH as it can lag up to 6 weeks.

Never ever go by the "your test results are normal" comment - many times they may be in range but not in "your" optimal range. I went 3 years undiagnosed with the "your labs are normal" comment.

It sounds like you have been over medicated.

Have you considered switching doctors? Many GP's or Family doctors can treat hypothyroidism.


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## HyperHypo (May 22, 2011)

Thanks for your replies. I admit that I don't know for sure if I'm Hypo or Hyper. I seem to have some of the symptoms of both. I agree that I should get more testing and I intend to do that. Right now I'm trying to figure out the tests that I should get. I intend to get the latest results of the thyroid tests my doctor routinely does. Any other test I guess will come out of my pocket. I doubt he will order them done based on me wanting to have them done.

On the Hypo side of the board I have:

Sluggishness
Infrequent bowel movement
Depression
Lack of thirst
On the Hyper side of the board I have:

Always hot compared to others around me
Sweating profusely at the least amount of exertion
Feel like I'm exhausted after moderate walking
Heart skips beats and beats hard at times
Lack of stamina during exercise
Trouble sleeping
Anxiety and feelings of unexplained emotional episodes
Puffy, baggy eyes
I was think of using the raw thyroid as a replacement for Levothyroxine for a while to see if the syptoms get better and as a way of telling if the Levothyroxine is causing the problems. Would that be dangerous?

I agree that adding it to the 175 mcg of Levothyroxine would probably make matters worse. I think I already have too much medication in my system now.

I appreciate everyone taking the time to help me with this problem. I really need help. The Hypo symptoms are something I can learn to live with. They Hyper symptoms I listed are making my life miserable to the point that I no longer enjoy life. I feel fine when I go off the Levothyroxine but I don't want to die from it. Would I really die if I did? Has anyone here ever quit taking it for good?


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## Andros (Aug 26, 2009)

HyperHypo said:


> Thanks for your replies. I admit that I don't know for sure if I'm Hypo or Hyper. I seem to have some of the symptoms of both. I agree that I should get more testing and I intend to do that. Right now I'm trying to figure out the tests that I should get. I intend to get the latest results of the thyroid tests my doctor routinely does. Any other test I guess will come out of my pocket. I doubt he will order them done based on me wanting to have them done.
> 
> On the Hypo side of the board I have:
> 
> ...


How can the doctor refuse you the proper tests? I would raise holy you know what if that happened to me. Does this have to do w/your insurance? If so, I would raise a little if not a lot w/them as well.

You are the patient (customer) and the client (customer.)

If I had to narrow the field and pay for myself (which I do as we never had insurance), I would go for the TSI (thyroid stimulating immunoglobulin) and the TSH, FREE T4 and FREE T3. You must be "specific" about the FREEs.


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## CA-Lynn (Apr 29, 2010)

On the bright side: many people have thyroid disease at your age, so ask around, and of those who DO have the disease, ask for the name of their doctor if they have been satisfied and well controlled.

It's important to tell the doctor to put "cc to patient" on the lab order. This way the lab will send you the results at the same time the doctor receives them. Don't know what they mean? Publish them on this forum and you'll have lots of help.

I know there are a number of people who claim to have good GP's who treat their thyroid condition, but I'm a believer in getting a specialist [endocrinologist]. They see far more cases than a GP ever will, and therefore have much more experience and success with treatment.


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## HyperHypo (May 22, 2011)

Thanks again for all the replies.

The insurance will pay for most all the tests if the doctor orders them. The problem is that my insurance is an HMO and my doctor is touchy about ordering tests unless he thinks they are really needed. Maybe he gets a bonus if he saves money. I don't know. He is a good doctor that I have used for many years. He is a good listener but he is reluctant to let the patient lead him down a path of testing or treatment. Maybe I should look for another doctor but I'm reluctant to do that. He is considered to be one the best in this area by everyone I have talked to that uses him.

I have seen the endocrinologist who has the reputation of being the best in this area as well. He gave me a through examination and lots of blood tests and 24 hour urine test. He treats my neighbor who has had her thyroid completely removed with great results. She takes 100mcg of Levothyroxine and I take 175mcg. Seems very odd to me.

Both doctors agree that my diagnosis is correct and the medicine dosage is correct. I will see if I can get lab results next week and post them here.

Could someone please give me your opinion of using raw thyroid as a substitute for Levothyroxine for a trial period to see how it effects my symptoms? Any opinions on what the consequences of doing that would be?

Thanks for all the help!


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## bigfoot (May 13, 2011)

lainey said:


> As for the raw thyroid, the symptoms you have are more from having TOO MUCH medication, rather than not enough. ADDING MORE medication to the mix by taking the raw thyroid is not likely to improve your situation.


I believe this is your answer.


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## lainey (Aug 26, 2010)

>>Could someone please give me your opinion of using raw thyroid as a substitute for Levothyroxine for a trial period to see how it effects my symptoms? Any opinions on what the consequences of doing that would be?<<

It is my opinion that these, when sold as supplements, are not regulated for quality and dosage strength. Therefore, it would be difficult to arrive at a consistent dosage schedule, as needed by the patient.

I do not believe they are an acceptable substitute for proper medication.

You need to have a look at your labs, to evaluate your dosage. It is your doctors' job to help you feel well, not insist theirs is the correct path, or dismiss your symptoms. Regardless of how reputable your doctor is, if they are not taking your symptoms into account, they are not truly serving you, the patient.


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## HeidiBR (Apr 4, 2010)

Because of your age, has anyone mentioned testing your Testosterone, FSH and LH? This might be important as if the T is off or low, they might be affecting your thyroid function.


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