# Endocrinologist doesn't understand me!



## halle (Sep 7, 2012)

I have been suffering from Hashimotos for 15 years. 15 years of hell. And finally after a dozen endos, I went to Cleveland Clinic Foundation.

Since June, my TSH has been steadily dropping.

June: 1.86
July 1.14

And now in September: 0.93 and 2 weeks later: 0.78

My Free T-4 is rising and going up this whole time.

I am having HYPERTHYROID SYMPTOMS, HOT FLASHES FROM HELL where I am drenched in sweat, night sweats, palpitations, tremors in my hands, stomach aches like I have to go to the bathroom more often. My hair is dry, my skin is getting hives.

My new endo says "you are in normal range." I agree I am. But that's only by his laboratory standards.

As a rule, my TSH is about 2.47 to 3.50. Anything below 2.27 usually indicates I'm going to have another bout with hashitoxicosis. I believe sincerely this is what is happening.

I am finding it difficult to function. I have brain fog, and depression, get nervous and angry very easily.

He said to keep watching TSH and if it hits below .40, he will treat with Methizole? sp? I tried Tapazole years ago and it did not work. He can't understand anything I am saying.

He then mentioned radioactive iodine to try to destroy the thyroid and I agree. I AM NOT GOING HYPER AGAIN. After 15 years enough is enough. This disease has ruined my life. Being hyper for me is sheer torture and yet, they still do not believe me when this TSH starts to drop, that it is going to happen. It always does.

Upon examination, he touched my thyroid and said it felt normal. News to me. I had a ultrasound a few years ago and it revealed an enlarged thyroid! It also hurt when he pressed on it. I have been hoarse lately and losing my voice, I have some difficulty swallowing, have lost a few pounds but nothing major.

Please don't tell me to go to another doctor. This is the Cleveland Clinic. What more can I do? I am SO ANGRY. :sad0049:


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## webster2 (May 19, 2011)

I am sorry that you don't feel well and the doctor fluffed you off. Have you had other antibody tests run? It is not unreasonable to ask for another ultrasound. How soon are you able to have RAI?

Finding a good endo is like finding the needle in the haystack, IMHO. Hang in there!


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## Andros (Aug 26, 2009)

halle said:


> I have been suffering from Hashimotos for 15 years. 15 years of hell. And finally after a dozen endos, I went to Cleveland Clinic Foundation.
> 
> Since June, my TSH has been steadily dropping.
> 
> ...


It is time to ditch that bad thyroid. Given that you have some symptoms of cancer, I would strongly suggest surgery rather than RAI.

Thyroid cancer symptoms
http://www.medicinenet.com/script/main/art.asp?articlekey=53303

http://www.cityofhope.org/patient_care/treatments/thyroid-cancer/Pages/symptoms.aspx


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## halle (Sep 7, 2012)

how does one get tested for thyroid cancer?:sad0049: my father had thyroid cancer and all they did was feel his neck and felt a nodule in the center. He had total thyroidectomy.

my lymph nodes are not enlarged, he thought swallowing problem could be gastrointestinal!!!!!!!!!!!!!!!!!!!

I am thinking of contacting the main endo at Cleveland Clinic. I do not think he is taking me seriously. Also, the last few months I have been very hot and flushing. my face is horribly red!


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## webster2 (May 19, 2011)

Testing can be done by fine needle aspiration. Or, the pathology after surgery. A second opinion is a good idea.


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## CA-Lynn (Apr 29, 2010)

Just out of curiosity, are you menopausal?


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## halle (Sep 7, 2012)

Yes, I am post menopausal they think. I had taken estrogens for 6 years and nothing ever worked so now I use nothing and since my TSH is dropping, I am getting these "explosions" of heat. They are so severe. They started when my TSH was 1.86. This is too LOW for me!

I told him about this sudden burst of intensive heat that covers me from my upper thighs to my face. My face turns red and I sweat right through my clothes. He said that is menopause and the thyroid has nothing to do with it. I am not so sure I believe it.

I do have hashi and Graves antibodies. Was flagged for Graves about 6 years ago but yet, they did nothing. I have had two radioactive iodine scans. They always claim uptake was not enough to explode the gland. This could lead to surgery but this new doctor is saying that even if we destroy the gland, I still will feel hot. I don't understand this because if I stop hyper symptoms how could I feel any worse?:a1Thyroid: I have decided to get in touch with the chief of endocrinology at the Cleveland Clinic. I want another endo. And just to show how cold he is, I asked him if he would write me a letter and get me excused from jury duty and he said "that is not a good enough excuse!" I think it is. I am so sick. How on earth can I possibly handle driving downtown, going through metal detectors and listening to some court case? I think he's being very, very unreasonable. I don't even work I feel so sick. Why should I have to go to jury duty?


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## CA-Lynn (Apr 29, 2010)

Sure sounds like menopause to me.


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## halle (Sep 7, 2012)

Menopause is definitely in the mix, but sooooooooooooooooooo severe! debilitating most of the time on certain days. have tried all types of estrogen. Pills, patches, soy, blah, blah, nothing works after 6 years of playing around with it, I use nothing now.


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## Andros (Aug 26, 2009)

halle said:


> how does one get tested for thyroid cancer?:sad0049: my father had thyroid cancer and all they did was feel his neck and felt a nodule in the center. He had total thyroidectomy.
> 
> my lymph nodes are not enlarged, he thought swallowing problem could be gastrointestinal!!!!!!!!!!!!!!!!!!!
> 
> I am thinking of contacting the main endo at Cleveland Clinic. I do not think he is taking me seriously. Also, the last few months I have been very hot and flushing. my face is horribly red!


Try to see an ENT; this is ridiculous! And I am worried for you. Now that I know your father had thyroid cancer, I am doubly worried.

Get RAIU (uptake scan), get Thryoglobulin and Thyroglobulin Ab lab tests. If you are not uptaking, that could be a sign of cancer!!!!

Low RAIU uptake and cancer
http://journals.lww.com/nuclearmed/...cosis_Caused_by_Functioning_Metastatic.1.aspx

I think you said you have TSI?>????

Thyroid cancer in patients with hyperthyroidism.
http://www.ncbi.nlm.nih.gov/pubmed/12876418

Here is info on the lab tests.

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

Another Thyroglobulin and cancer
http://www.mdlinx.com/endocrinology...963/?news_id=811&newsdt=092010&subspec_id=419

Get armed with information and go to battle!!


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## lillia (Apr 24, 2012)

Based on other testimonies, it seems highly unlikely that a TSH of 1.86 is in fact too low for you. Perhaps others will confirm. I have experienced hot flashes from episodes due to Hashi's but nothing that severe. Are you currently on medication? It seems like something else is going on here, I would suggest following the advice Andros has given. If it is your thyroid, perhaps getting it out is the best option to relieve those debilitating hot flashes!
Best of luck hugs3


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## halle (Sep 7, 2012)

thank you for all your knowledge and help, Andros! Today, I reported the endo at Cleveland to their main unit and I am switching to the head of the department. He is the "big cheese" over there. All he does is thyroid surgery and work with thyroids. And as you said, the first thing he has ordered is a thyroid scan! But this is not until I can get back to Cleveland on October 12. We will see what he has to say.

Yes, I have both TPO and TSI. TSI has always been higher.


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## halle (Sep 7, 2012)

Lillia, thanks for your input. No, I take nothing at all. Nothing works on me. Went to hormone specialists and they thought I had a malabsorption problem. So I saw a gastrointestinal doctor at Cleveland Clinic and went through tons of tests. He said I have no malabsorption problem that he can see due to all his testing.

I then went to the endo there and he said that my thyroid problems have nothing to do with hot flashes! I don't understand this because when someone is hyper, they are HOT and I have always been this way. My doctor here at home believes that thyroid problems DO contribute to exacerbating menopausal symptoms and make them worse and I agree!

Also, I know for myself personally that when TSH drops this quickly and my body has always been hypo or normal with 3.90 or further up to 5.50, I feel much better. So dropping below 1.0 to 0.78 right now is definitely changing the way I feel. I have tons of anxiety, tremors and heart palpitations. My old endo said my body just isn't comfortable with a TSH that low. That's how I roll, I guess.
I knew a girl that was hypo and felt better with a small dosage of 25mcg of Synthroid and when they upped it, she always went hyper! So I think everyone is different and these hormone changes are a real shot in the arm for me to change SO drastically.


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## CA-Lynn (Apr 29, 2010)

In case no one's mentioned it, if you consume them, stop: coffee, tea, chocolate, spices......

They exacerbate hot flashes.


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## Andros (Aug 26, 2009)

halle said:


> thank you for all your knowledge and help, Andros! Today, I reported the endo at Cleveland to their main unit and I am switching to the head of the department. He is the "big cheese" over there. All he does is thyroid surgery and work with thyroids. And as you said, the first thing he has ordered is a thyroid scan! But this is not until I can get back to Cleveland on October 12. We will see what he has to say.
> 
> Yes, I have both TPO and TSI. TSI has always been higher.


I sure hope this is the "magic" we all are waiting for on your behalf. Oct. 12 is not that far away.

Glad to hear about the scan. Very glad!


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## sleepylady (Mar 18, 2012)

Maybe I should consume the chocolate, spices, etc. I am freezing all the time! LOL!


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## halle (Sep 7, 2012)

thanks everyone!

I am guilty of chocolate so I did stop that. Unfortunately, I don't see a difference.:sad0049:


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