# Please help, at the end of my rope with dr.



## ogauthier (Jul 15, 2011)

I have been seeing my endocrinologist for 4 years now (live in an area where she is the only one available for several hundred miles). I am so very unhappy with my care and don't think she is helping anything at all or very willing to do anything. She takes blood work about every 8-12 weeks and in that time my thyroid has "caused me all kinds of problems". I am constantly tired to the point of exhaustion, can't control body temp at all (always cold), severe headaches (taking topamax to control migraines) been to neurologist and they found nothing, following gluten free diet because of severe diarreah and stomach cramps after eating most foods (she suggested I try this diet since a gastrointerologist found nothing wrong), The only thing my endocrinologist has done in the past 4 years is to "tweak" my levothyroxin every 8-12 weeks when the numbers come back all wacky. She is now accussing me of either not taking it at all or taking too much of it to throw off my labs!!! Here are the tsh numbers over the last few years. I have numbers for EVERYTHING else since she does a ton of blood work every 8 weeks.
Tsh- on 7/11/11= 20.88
Tsh- on 5/3/11= 4.32
Tsh- on 11/4/10= .94
Tsh- on 9/28/10= .04
Tsh- on 8/9/10= .03
Tsh- on 7/23/10= .05
Tsh- on 7/6/10= 36.05
Tsh- on 6/11/10= .01
Tsh- on 3/30/10= .02
Tsh- on 1/25/10= .41
Tsh- on 12/8/09= less than .01
Tsh- on 9/22/09= .55
Tsh- on 8/18/09= .07
Tsh- on 4/29/09= less than .01


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## lainey (Aug 26, 2010)

Well, you are either very hyper or very hypo. There seems to be no in between here. Your symptoms are likely from being at both ends of the scale, as they are similar?

Do you have any free T4 or T3 numbers to go with the TSH? What are the dosages that go with these numbers? What brand of medication? Have you had antibodies tests--both TPO and TSI? A thyroid ultrasound? This would give a clearer picture of what is going on.


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## Lovlkn (Dec 20, 2009)

ogauthier,

{{hugs}}

Please post additional lab's with ranges.

You especially cannot dose by TSH based on your movement of TSH you likely have stimulating and blocking antibodies at work.

Does your doc run any "free" T-4 or Free T-3 tests?

What is you diagnosis?


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## Andros (Aug 26, 2009)

ogauthier said:


> I have been seeing my endocrinologist for 4 years now (live in an area where she is the only one available for several hundred miles). I am so very unhappy with my care and don't think she is helping anything at all or very willing to do anything. She takes blood work about every 8-12 weeks and in that time my thyroid has "caused me all kinds of problems". I am constantly tired to the point of exhaustion, can't control body temp at all (always cold), severe headaches (taking topamax to control migraines) been to neurologist and they found nothing, following gluten free diet because of severe diarreah and stomach cramps after eating most foods (she suggested I try this diet since a gastrointerologist found nothing wrong), The only thing my endocrinologist has done in the past 4 years is to "tweak" my levothyroxin every 8-12 weeks when the numbers come back all wacky. She is now accussing me of either not taking it at all or taking too much of it to throw off my labs!!! Here are the tsh numbers over the last few years. I have numbers for EVERYTHING else since she does a ton of blood work every 8 weeks.
> Tsh- on 7/11/11= 20.88
> Tsh- on 5/3/11= 4.32
> Tsh- on 11/4/10= .94
> ...


Hi and welcome!

On these..................................Tsh- on 7/11/11= 20.88
Tsh- on 5/3/11= 4.32

Do you have any other labs to go with them? If so, can you post the results and ranges?

Have you ever had any antibodies' tests such as the ones listed below?

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/

Has your doctor ever run your ferritin which could account for not only being cold but preventing benefit from your thyroxine replacement?

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

Have you ever had a sonogram of your thyroid? Or RAIU (radioactive uptake scan?)

And, may I just say that any doctor can treat thyroid. All they have to do is have a desire to get their patient well and think outside the box.


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## Andros (Aug 26, 2009)

ogauthier said:


> I have been seeing my endocrinologist for 4 years now (live in an area where she is the only one available for several hundred miles). I am so very unhappy with my care and don't think she is helping anything at all or very willing to do anything. She takes blood work about every 8-12 weeks and in that time my thyroid has "caused me all kinds of problems". I am constantly tired to the point of exhaustion, can't control body temp at all (always cold), severe headaches (taking topamax to control migraines) been to neurologist and they found nothing, following gluten free diet because of severe diarreah and stomach cramps after eating most foods (she suggested I try this diet since a gastrointerologist found nothing wrong), The only thing my endocrinologist has done in the past 4 years is to "tweak" my levothyroxin every 8-12 weeks when the numbers come back all wacky. She is now accussing me of either not taking it at all or taking too much of it to throw off my labs!!! Here are the tsh numbers over the last few years. I have numbers for EVERYTHING else since she does a ton of blood work every 8 weeks.
> Tsh- on 7/11/11= 20.88
> Tsh- on 5/3/11= 4.32
> Tsh- on 11/4/10= .94
> ...


I forgot to add this as a "possible!"

The main symptom of RT3 issues is that of hypothyroidism that won't respond to treatment. If this sounds a bit like Chronic Fatigue Symptom then that's not unduely surprising.

Please ask for rT3 (reverse T3) test.

http://thyroid-rt3.com/whatis.htm


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## ogauthier (Jul 15, 2011)

I have as many test results as you could want! 
5/3 T4, FREE 0.7 (0.8-1.8 ng/dL)
T3, FREE 3.0 (2.3-4.2 pg/mL )
11/4 T4, FREE 1.1 (0.8-1.8 ng/dL )
T3, FREE 3.4 (2.3-4.2 pg/mL )
11/4 TSI 34 (<140 % baseline)
May 2009 THYROID PEROXIDASE ANTIBODIES 269 (<35 IU/mL)
June 2011 RHEUMATOID FACTOR 6 (<14 IU/mL)
June 2011 -ANACHOICE CASCADING REFLEX Negative
I have been to every -ologist known to man in the last year trying to find the root cause of "everything". Had lots of gastro problems this year, but gastrointerologist ran upper and lower gi's and found NOTHING! Had lots of problems with headaches/migraines, but neurologist for NOTHING! Many upper respiratory/strep throat/tonsillitis problems, but allergy dr nor infectious desease dr found anything! I did have my tonsils taken out this year on my endocrinologists recommentation that they could be causing some of my problems. It did not help!
I have ALWAYS taken levothyroxin and am currently taking .75 mg once daily. She just bumped that up from .50 from the last set of labs.


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## lainey (Aug 26, 2010)

Well, the fact that you have TSI (thyroid stimulating antibodies) and TPO (thyroid peroxidase antibodies) could be part of the problem. In autoimmune thyroid disease, some patients have both sets of antibodies--some block the thyroid, some stimulate it.

Depending on which are more active, you will get TSH numbers that can "swing" pretty widely--such as yours have. It makes it difficult to medicate the patient, because the replacement dose shifts much more than it should.

We have a folder in the forum for hashitoxicosis--which is a name for the situation where, because of antibodies shifts, the patient swings from hypo to hyper. You may wish to discuss the conflicting antibodies in regards to your results with the endo, and see what they think.


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## Andros (Aug 26, 2009)

ogauthier said:


> I have as many test results as you could want!
> 5/3 T4, FREE 0.7 (0.8-1.8 ng/dL)
> T3, FREE 3.0 (2.3-4.2 pg/mL )
> 11/4 T4, FREE 1.1 (0.8-1.8 ng/dL )
> ...


Okay.............................you do have antibodies and immunoglobulin indigenous to thyroid disease.

The well person should not have a single drop of TSI.

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

Since you have TSI (Thyroid Stimulating Immunoglobulin), I would be willing to bet that you also have these..........

Trab (Thyroglobulin antibody)

TBII (Thyrotrophin Binding Inhibiting Immunoglobulin)

All of this mess consists of stimulating, blocking and binding antibodies and immunoglobulins and that is why your "numbers" are going nuttso like they are.

Your body's immune system is fighting hard to right it's self. One reason for your myriad of health problems no doubt.


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## ogauthier (Jul 15, 2011)

Is there something different that should be done or more that can be done than just adjusting the same medication every 8 weeks? That is what seems to be killing my confidence with my dr. and I don't really have a choice about another endo in my area.


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## Andros (Aug 26, 2009)

ogauthier said:


> Is there something different that should be done or more that can be done than just adjusting the same medication every 8 weeks? That is what seems to be killing my confidence with my dr. and I don't really have a choice about another endo in my area.


For one thing, your endo should not accuse you of being non-compliant. If she truly understood what I am telling you about the antibodies and immunoglobulins, she would be a better doctor. Clearly this is not her field of expertise.

She should run these tests..................(if you have not had them done)

Trab (Thyroglobulin antibody)

TBII (Thyrotrophin Binding Inhibiting Immunoglobulin)

And as a patient, you need to press her for a comment about your TSI when you know (as per the link is gave you) that you should not have any TSI.

She should also order a sonogram (RAIU would be the best choice) to make sure you do not have cancer.

I don't know what else to suggest other than "any" doctor can help you; they just have to want to. Even my veterinarian knows more about the thyroid than I could ever possibly hope to know.

This is a horrible situation for you. Many of us have worn your shoes and that is why we are here trying to help so that others do not have to suffer so much.


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## ogauthier (Jul 15, 2011)

Thank you everyone for all your advice and help. I look forward to going into my next appointment armed with some information!


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## Andros (Aug 26, 2009)

ogauthier said:


> Thank you everyone for all your advice and help. I look forward to going into my next appointment armed with some information!


You can be your best advocate. Hard to do when you are ill but most of us here have had to do it also.

Tch!

Let us hear from you soon!


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