# Please help! Is it my hashi's acting up?



## usmc4myson (Sep 26, 2010)

Hi Everyone,
It has been a couple of months since I have been on the boards. I am really struggling. Up until 2 days ago, I had no idea that I was being given a slow death sentence with every levothyroxine script I have filled over the last 12 years. In other words, I feel like hell, but since my TSH is "in range"-it can't possibly be due to my thyroid. I've never questioned that reasoning...until 2 days ago.

I learned so much about my thyroid nodule when I was on the boards back in January and Feb. I never thought to take it one step further, and question the endo's judgment regarding how I was feeling vs. my lab values. I was literally crying for help in his office (he is a world reknown endo working out of a large famous hospital in Philly) and he sent me on my merry way, with a follow up letter to my doctor that spoke of my additional multiple health issues, and how he is sure that my doctor is able to take care of them. He biopsied my solid nodule, said my 112 mcg. levo dose was "perfect" and wants to follow up US, and test my TSH again in 8 months.

I am just so angry and sad. Last week I decided to take charge of my health, and joined my son's gym. The owner told me that with fibro, I should exercise for 5 mins at a time, then rest for 5, etc...and not more than 30 minutes total. I did that for the past 4 days. I experienced no pain while exercising, but at night, I was down for the count with so much tenderness all over my body. I stuck it out, and did this for four days.

Today, I am flushed all over, red, and feel lethargic. I have a rash under my arms, like an allergic reaction. This fluctuates with my hands and feet being ice cold and purple. Is this my body telling me to stop exercising? I also feel like my throat is very swollen...like it is more work to swallow than it normally is-and I also have high grade, high volume GERD (with no heartburn) that was recently diagnosed. I also have the urge to clear my throat way more than usual.

I spent the morning calling different doctors to see who was open to prescribing anything but T-4. Nobody was, and if they were, they conveniently did not accept any more patients with Keystone East insurance! Isn't that interesting??

Does anyone go to a really great doctor in the philly area that they can recommend to me? I have officially reached my tipping point, and I will not be told that my thyroid is ok, when clearly I am NOT OK!!! I will not be defined by lab values, or be told that salivary testing of cortisol is quackery, when science proves otherwise. I want my life back!!!!  I need help! I need a doctor who understands the oath he took!

I would so appreciate any ideas or doctor recommendations (are those allowed?) or PM me with them if they are not allowed to be posted.
Thank you from a toxic woman who longs to be nontoxic! explode

~Amy


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## Andros (Aug 26, 2009)

usmc4myson said:


> Hi Everyone,
> It has been a couple of months since I have been on the boards. I am really struggling. Up until 2 days ago, I had no idea that I was being given a slow death sentence with every levothyroxine script I have filled over the last 12 years. In other words, I feel like hell, but since my TSH is "in range"-it can't possibly be due to my thyroid. I've never questioned that reasoning...until 2 days ago.
> 
> I learned so much about my thyroid nodule when I was on the boards back in January and Feb. I never thought to take it one step further, and question the endo's judgment regarding how I was feeling vs. my lab values. I was literally crying for help in his office (he is a world reknown endo working out of a large famous hospital in Philly) and he sent me on my merry way, with a follow up letter to my doctor that spoke of my additional multiple health issues, and how he is sure that my doctor is able to take care of them. He biopsied my solid nodule, said my 112 mcg. levo dose was "perfect" and wants to follow up US, and test my TSH again in 8 months.
> ...


Amy..............we have not seen you for a long time. Do you have recent labs and ranges you can show us? Also, what was the result of the biopsy? Did the doctor never tell you?

What antibodies' tests have you had?

You sound really unwell; I am worried.


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## usmc4myson (Sep 26, 2010)

Andros,
As always, you are awesome. 

I had the biopsy, and the results were"compatible with benign follicular nodule (nodular goiter). The specimen is hypocellular and consists of follicular cells (predominantly in flat monolayers), Hurthle cells, macrophages, colloid, and blood. In my follow up appointment with that endo, it took like 5 minutes for him to tell me that it was nothing to worry about. Not cancer. Repeat ultrasound in 8 months, along with a lab slip to re-test my TSH, lipid profile, ALT, and a basic metabolic panel. He said my synthroid dose was "perfect". He also sent me across the street to ENT, where I had a series of tests which found esophagitis, a hiatal hernia, and high volume, high grade reflux. So I have been on a PPI since January...twice a day. I was still coughing at night and clearing my throat like a madwoman...so I saw on a forum someone recommended Gaviscon liquid. THAT product actually stopped my cough and throat clearing. 
So, my thyroid has been put on the back burner, until a few days ago when I happened upon a website called Stop the Thyroid Madness. That website really opened my eyes to what has been happening to me.

I have no brand new labs, just ones from 9/28/10 after my CT scan from he*%...where I reacted to the iodine.

I brought these results with me to the endo in Philly, and he made absolutely NO comment on them. No concern, whatsoever.

TPA 203H (<35)
Thyroglobulin AB 35H (<20)
T-3 uptake 29 (22-35)
T-4 total 7.6 (4.5-12.5)
Free T-4 index 2.2 (1.4-3.8)
TSH 2.90 (.40-4.50)

That's all that has ever been tested on me, except ANA, which was positive years ago, but now is negative? I also had active lyme's at that time.

My ALT and AST have come back high, as well as my hematocrit, granulocytes, and absolute neutrophils, and my spleen has been enlarged for no apparent reason...but no one ever has done anything except repeat the labs and watch.

I now know that my doctor is ordering all the wrong labs. Even the endo in the city is. My issue is finding a doctor who will help me.

I am so desperate to feel good. I will be 42 tomorrow, and I do not want to live the rest of my life in pain, fat, and so sub-par!!!! 
I did find an endo today who will treat me, my adrenals, my metabolism, and my symptoms, but he is not a participating provider, and it's 350 for first appt, 90 for every follow up. I might just put it on my credit card, and go. At this point, my health hangs in the balance!! 
I say...it's worth it. What do you think? Unless someone on this board can recommend someone else.

Blessings~
Amy


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