# I'm new here and at the end of my rope.



## Falstaff (Mar 27, 2012)

Hello!

I am extremely frustrated, even angry, with my doctors and I feel like screaming. My research supports my suspicions that I am hypothyroid. My doctors, (primary care, gyn, and several endos over the years) insist that there is nothing wrong with me or say things like:

"You're not 20 anymore"
"Avoid lipid consumption" 
"You must be a closet eater"
"I know women want to stay attractive for their husbands, but you must accept that you're middle-aged"
"Your hair looks ok to me."
"Try Jenny Craig"

My symptoms:
10 years ago an unexplained weight gain of approx 70lbs. In one year. I have not been able to lose it. Not even a few pounds.
Onset of severe depression - it has waxed and waned
I am cold all the time. Really cold. I'm not comfortable unless it is at least 80 degrees. My body temp is usually between 95 and 98 degrees. 
My cognitive ability has declined. Severe short term memory loss. It's worse than "brain fog". I often have to reread sentences, I often have trouble articulating or formulating complex sentence structures. 
I am exhausted all the time. I get through the day, but I always feel as if I've climbed a mountain.
My tongue is swollen to the point that I've got bite marks on it. It started out as just scalloping on the edges; in the past year it's swollen to the point my teeth close on it. 
My hair has been thinning for several years. In the past year it's gotten so bad that my scalp is starting to show. I'm leaving hair everywhere.
My nails are brittle.

Diet and Lifestyle:

I do not eat any junk food or packaged food. No soda, little sugar. I raise my own meat and most of my vegetables. (I operate a small farm) Eggs from hens pastured on grass, the beef is finished on grass, the pork is finished on acorns. I am active all year round doing farm work almost all day long. I only relax in the evening or if the weather isn't conducive to farm labor.

I also exercise - several times a week I exercise to a video - cardio plus weights. It's only 45 minutes 3 x's a week. I worked with a personal trainer at a gym for one year - but not only did I not lose any weight - the long drive to and fro was interfering with the farm work - so I quit. I've also been to a nutrionist. There is nothing wrong with my diet but I cannot go below 1200 calories a day or I get lightheaded. I stay between 1200-1700 calories a day.

My sport is horses - not plonking around in an arena or a trail but a high risk competitive sport that is seasonal in nature. My horses are fit athletes - they and I are more akin to jockeys and racehorses than a backyard pleasure riders and horses. (only trying to illustrate that I AM active all the time - I'm not sitting around watching tv and eating pizza)

I cannot lose one pound. And the hair loss has gotten so bad people are remarking on it and my weight - everyone assuming I'm lying about what I eat.

Tests show I'm "normal". My most recent tests show the following results:

Fasting glucose: 87 (range 70-99mg/dl)
TSH 3rd Gen HS 1.66 (.34-5.60 mIU/ml)
T4 Free .82 (.60-1.60 ng/dL)
Total T3 1.30 (.60-1.81ng/mL)

B and D vitamins ok
Lyme test negative (I am tested often as my occupations places me at risk)
Cholesterol is excellent.

At my insistence my gyn did an ultrasound to look for cysts on my ovaries - nothing there.

There is no indication I am insulin resistance or diabetic. My only other health problem is that I have some facet joint arthritis and thinning of the disc at L4/5 but given my sport and occupation - not exactly surprising I've got osteoarthritis. It doesn't bother me much.

So are all my doctors right and I'm 100% healthy but just experiencing misery,horrible weight gain, balding and other hypo symptoms for no reason? 
Because I tell you what, I cannot live like this anymore. And if one more doctor pats me on the head and tells me to take an anti-depressant I may just tell him exactly what I think of him.

Any thoughts? Suggestions? Thanks so very much.


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## joplin1975 (Jul 21, 2011)

Have you been told the horses do all the work? Because I get that all the dang time. 

Welcome. They are others who are better with lab work, but have you ever had your TPO and/or TSI tested? (blood test) and, have you ever had an ultrasound of your thyroid?

Many have autoimmune issues and the various antibodies (and, um, other things which I rarely understand) skew the results of the standard thyroid panel. My free t4 and free t3 were in range, but my thyroid was a hot mess.


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## I DClaire (Jul 31, 2011)

I'm sure I've probably posted more than once on this site that I was at the end of my rope! There have been times when I felt like using a rope to hang somebody but either I am getting better OR I've simply mellowed to the point where nothing much gets to me anymore.

I believe with every ounce of my being that my thyroid problems started probably 20 years ago when an EN&T specialist said I had a "bruit" in my thyroid and prescribed Synthroid. A few months later my Internist said no, my blood tests didn't indicate I had any thyroid problem and she wouldn't let me stay on Synthroid. If I'd known then what I know now, I would have beat a path to another Internist!

I don't know what to tell you other than you are not alone with your worry and frustration. Personally, I have little faith in thyroid tests. One month after being told my latest lab results were "biochemically euthyroid", in other words normal with medication for hyperthyroidism, I had my thyroid surgically removed. It was three times bigger than normal and contained cysts, nodules and a tiny papillary cancer. I'd also had probably a half a dozen ultrasounds and the same number of nuclear scans.

Now I'm fighting another battle - I cannot seem to get either a thyroid hormone replacement I can tolerate OR enough that I don't feel woefully under-medicated.

Thyroid disease seems to be another one of those health issues like depression. I don't think anyone can truly understand what it's like to have thyroid problems unless you've experienced them firsthand. If one more doctor had told me my complaints were "age related" I'm not sure but what he (or she) might have found themselves at the end of my rope!!


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## lainey (Aug 26, 2010)

Has anyone ever run any thyroid antibodies--such as TPO (thyroid peroxidase antibodies) on you?


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## Falstaff (Mar 27, 2012)

Thanks so much for your replies.

The only tests that have ever been run are the basic blood tests. No tests for antibodies, no ultrasounds, nothing else. Basic blood tests, a pat on the head and a patronizing comment, and a kick out the door. I kid you not.

TSH, T4, T3. I didn't even know there was a test for antibodies until I started doing independent research. I wouldn't even know how to ask for more tests, or how to insist upon specific tests.

Nice to see another equestrian - (waves hi!) When I talk or write about horse sports I always launch into that explanation - non horse people don't get it. Doctors especially.


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## Andros (Aug 26, 2009)

Falstaff said:


> Hello!
> 
> I am extremely frustrated, even angry, with my doctors and I feel like screaming. My research supports my suspicions that I am hypothyroid. My doctors, (primary care, gyn, and several endos over the years) insist that there is nothing wrong with me or say things like:
> 
> ...


Oh, wow..................never mind the numbers. You are hypo. You have macroglossia!

http://emedicine.medscape.com/article/873658-overview

http://en.wikipedia.org/wiki/Macroglossia

You barely have any FT4 which is what converts to FT3. Here is info on that.

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

http://www.drlam.com/articles/hypothyroidism.asp?page=2#diagnosis: standard laboratory test

http://www.thyroid-info.com/articles/freet3woliner.htm

Dr. Mercola (FREES)
http://www.mercola.com/Article/hypothyroid/diagnosis_comp.htm

And because there are blocking, binding and stimulating antibodies it is possible that your TSH result is false due to an attack on the receptor site.

So, I strongly suggest you get antibodies' tests!

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

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/

I got sickened when I read your post for I was told exactly the same things for 20 years by every doctor I went to. 20 of the best years of my adult life.......................or let's just say they were supposed to be.

Something tells me Polo? Am I right? Love to guess at things.

Also, an ultra-sound would be a very very good thing to do as cancer must always be a consideration.

You are in serious need of medical intervention but I don't know how to help you find a doctor to listen to you.


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## I DClaire (Jul 31, 2011)

Falstaff said:


> Thanks so much for your replies.
> 
> The only tests that have ever been run are the basic blood tests. No tests for antibodies, no ultrasounds, nothing else. Basic blood tests, a pat on the head and a patronizing comment, and a kick out the door. I kid you not.
> 
> ...


The first endocrinologist I saw (mind you a woman with probably 25 years or more experience) gave me the bum's rush also. I've never seen a doctor be so flippant and I am thankful my husband witnessed what happened. She said, "Well maybe you've got Graves...or maybe you've got Hashimotos or maybe you're just depressed." She then left the room and eventually a nurse came in with an appointment card to come back in 6 months.

I handed it back to her and said I wouldn't be needing it!!


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## Falstaff (Mar 27, 2012)

Thanks for the information.

Unfortunately I have to wait weeks for an appointment, but will ask about these tests at my next appt in 3 weeks. When I told him about the swollen tongue, his reply was, "Lots of things can cause that."

No, I don't play polo but you're close.

I do exercise. I can't even lose one pound. Not one. All I've been able to do is slow the rate of gain. I think that if I was not an absolute slave to diet and exercise I would be 300lbs by now. But this is no way to live; which I think all of you can relate to. I feel like the best years of my life have been wasted because no doctor will listen to me.

Thanks for the information.


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## Andros (Aug 26, 2009)

Falstaff said:


> Thanks for the information.
> 
> Unfortunately I have to wait weeks for an appointment, but will ask about these tests at my next appt in 3 weeks. When I told him about the swollen tongue, his reply was, "Lots of things can cause that."
> 
> ...


We can relate; we sure can! Just know we are here for you!

So, why did not the doctor itemize the lots of things that can cause macroglossia? Too much trouble? Hmmmmmmmmmmm??

Go armed with information and knowledge. We will help you do that.


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## kimberllee (May 20, 2011)

I'm so sorry you're going through this. Your story sounds almost identical to mine in so many ways. All my tests were normal. Including the antibodies tests. High normal. But normal. Only a ultrasound was able to give me a diagnosis and confirmed with a fna biopsy. If your doctors aren't listening, fire them. They work for you. Not vice versa. Keep searching. I promise there is a doctor that will believe you and will get to bottom of it. I went to six doctors. Before getting diagnosed. I just marched up to mayo after having seven months of major complications. Keep fighting. You know your body better than anyone.


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## sjmjuly (Mar 23, 2012)

Falstaff said:


> Thanks so much for your replies.
> 
> The only tests that have ever been run are the basic blood tests. No tests for antibodies, no ultrasounds, nothing else. Basic blood tests, a pat on the head and a patronizing comment, and a kick out the door. I kid you not.
> 
> ...


You can order a TPO test online and take it yourself at home if you can't get an IDIOT doctor to order one. I contacted ZRT Laboratories, order the test, took it at home and received the results a week later. I took these to my naturopath and this is how I found out I have Hashi's. Just a thought in case you needed an option.


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## Falstaff (Mar 27, 2012)

Update:

Seems that in my state, there are several doctors who appear to consider more than just lab results when it comes to hypothyroidism.

I have chosen one and have set an appointment - it's in May so again.. more waiting.

In the meantime I'll keep my appt with the existing endocrinologist as he did order a repeat Thyroid panel and he won't release the results until I come in for the appt. He said after I meet with him he is willing to send a copy of the labs to another office.

Ten years of being shuttled from endo to endo, and my regular doctors dismissing my concerns in annual exams. I guess waiting another month won't kill me.

Thanks again for your help.


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## Falstaff (Mar 27, 2012)

It's been several months, and it's time for an update. Hopefully newbies at the end of their rope will read this and know there is light at the end of the tunnel. And it is not an oncoming train!

In May, I met with a physician who took one look at my labs (I'd ordered copies of all my lab results from every physician) and was horrified I'd been left untreated for so long.

I do have several vitamin deficiencies which are being corrected.

She started me on Armour; with a schedule for titrating up to 3 grains. But she stated that once I felt well, to stop titrating up.

Within a week my hands and feet were no longer blocks of ice. Once I got up to 2 grains I noticed the swelling in my eyelids, my puffy face, hands and feet was a bit less - I can finally wear my wedding ring again. I started 3 grains last week and this morning I looked in the mirror and I realized that the puffy face is really gone. It's gone. I just look like a normal, middle aged person.

I can say that within the last couple of weeks, the depression has really lifted.

The other day I had to memorize a phone number - and I DID. I memorized it on the first try.

My resting heart rate is in the high 60's; no indications that my dose is too high (going back for testing in a few weeks). The heart rate does rise about 10bpm by nightfall - but my understanding is that a faster heart rate in the afternoon/evening is normal. In the high heat we've been experiencing - my a/c went out and my heart rate was in the high 90's - but I doubt that was too much Armour - I was a sweaty, miserable mess and couldn't breathe.

I have not lost weight - but what is remarkable is that I have STOPPED GAINING. The weight loss will come or not - but at least now I have a fighting chance. I am working out but have gotten lazy about it. The difference is that I am really being lazy. Not exhausted.

The swollen tongue has gotten a little better - I still have scallop marks on it but they are not as bad as they were.

My temperature is about 98.6.

The only worry I have is that the hair loss has not stopped. I'm still shedding a lot of hair and I haven't noticed any new growth - though I have noticed that my eyebrows aren't growing back either.

I am taking iron, lysine, calcium, magnesium, B-complex, and D, in addition to a multi-vitamin (at my drs instruction).

For those who have experienced hair loss - is this the last symptom to resolve? My understanding is that hair has a long cycle; so hair I am losing now (or in the past) may take a long time to grow back.

There doesn't seem to be a lot of information on that symptom. Only that yes, you do lose it, and yes, it should come back. But no real information on when a properly treated person should stop losing hair, and when such a person should see a return of hair growth. In other words - what to expect.

Thanks so much - and thanks for your assistance and support. I hope all of you are doing well.


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## Andros (Aug 26, 2009)

Falstaff said:


> It's been several months, and it's time for an update. Hopefully newbies at the end of their rope will read this and know there is light at the end of the tunnel. And it is not an oncoming train!
> 
> In May, I met with a physician who took one look at my labs (I'd ordered copies of all my lab results from every physician) and was horrified I'd been left untreated for so long.
> 
> ...


What wonderful wonderful news!! You will stabilize and will lose weight. It would help us help you if you could post your most recent thyroid lab results with the ranges. If you are at exactly the right place for you (euthyroid), you will lose weight if you chose a sensible diet and stay on that diet 7 days a week for however long it takes.

Taking Omega III can help your hair and it would be wise to have your ferritin checked.

Ferritin http://www.thewayup.com/newsletters/081504.htm
(should be 50 to 100; the closer to 100, the better)


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## Falstaff (Mar 27, 2012)

I have an appt next month and once I get the results back I'll post them.

I am taking iron but will have that checked as well.

Oh - another symptom that has disappeared is the all over body aches and joint pain. My body would ache so much I felt like an RA patient. I would take an occasional Vicoden because it would get so bad. I also took a lot of ibuprofen for the joint pain - which would get so bad sometimes it would wake me up at night.

I had been tested for Lyme disease many times - all tests were negative.

I have not taken any OTC or prescription meds (for pain) since about two weeks after I started Armour. The pain and aches just stopped.


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## webster2 (May 19, 2011)

What a great story! I am so glad you are feeling better! BTW, the hair issue does resolve. It takes awhile. I think because it is something we can easily view that maybe it becomes a primary focus, it sure was for me! I used to have great hair and then it got just awful, or what hadn't fallen out was awful! It is much better and has grown back in. I am glad you are feeling better! Thanks for sharing your good news!


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## Andros (Aug 26, 2009)

Falstaff said:


> I have an appt next month and once I get the results back I'll post them.
> 
> I am taking iron but will have that checked as well.
> 
> ...


Thank goodness! You are on the healing pathway now!


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