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Old 08-15-2009, 02:54 PM   #1
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Help a new Hashi Mom buy lab tests

DD is newly insured medically. Last labs were in April, 09. She has Hashimoto's. Removal of half her left lobe in 2005 due to cancer.

Because of insurance restrictions, she could not see an endo without referral, which her PCP would not give. She could not stay on the Synthroid that the endo surgeon ordered, due to the PCP not allowing check ups with endo, so she had to accept the generic: levothyroxine.

Her numbers change drastically. She presently has four different dosages of the levothyroxine and is still not well--dated May, 09.

With school approaching and her work schedule, fitting in a doctor appt is not easy. I want to avoid meeting the endo, bringing old labs, he/she ordering new work, wait for results, make new appt to see endo, endo treats.

What blood tests would be beneficial for her? Any and all that could help her. I believe her to be having serious depression issues, weight issues, possibly digestive/food allergy, anemia, brain fog - maybe some nutritional issues as well.

Thank you so much.

 
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Old 08-15-2009, 03:52 PM   #2
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Re: Help a new Hashi Mom buy lab tests

You're going to have to stiffen your spine here, in order to protect your daughter... or she will, if she is no longer a minor child. The following advice is directed to whichever of you is legally in charge of her health.

She has had thyroid cancer, therefore her TSH must be suppressed in order to prevent recurrence. That's a medical given... no ifs or buts about it. If generic levothyroxine isn't suppressing her TSH the way it needs to be, and if Synthroid did that, you absolutely must fight with that PCP to get her back on the med that works the best for her... even if that means you have to pay more out of pocket for it.

That said, there is plenty of professional evidence that levoT may never work as well for her as the brand name has been doing. I can't post the link to the info, so you'll have to look this up on your own:
"Joint Position Statement on the Use and Interchangeability of Thyroxine Products", written by the American Thyroid Assn, the American Assn of Clinical Endocrinologists, and the Endocrine Society. In it, they question the FDA's methods that arrived at the declaration that all thyroxines are bioidentical. They aren't. They also declare "Best Physician Practices", which says that patients should be maintained on the same brand name levothyroxine product that works best for them. If the brand of levothyroxine medication is changed, either from one brand to another brand, from a brand to a generic product, or from a generic product to another generic product, patients should be retested by measuring serum TSH in six (6) weeks, and the drug reiterated as needed. Since small changes in levothyroxine administration can cause significant changes in TSH serum concentrations, precise and accurate TSH control is necessary to avoid potential adverse iatrogenic ("iatrogenic", meaning caused by the physician's ineptitude) effects. If levels control can't be maintained on the different product, the patient shouldn't be forced to switch.

I would print a copy of the statement and provide it to the stubborn PCP who apparently would rather risk a recurrence of your daughter's thyroid cancer in lieu of benefiting the financial interests of the insurance company. Don't allow that to happen! There should be an appeals process if you still can't talk sense into the MD. Use it, if need be.

I have little doubt that most of your daughter's troubles are being caused by her med that isn't working for her. I wouldn't put a lot of money, time, and effort into finding individualized remedies for each of them until it's learned whether the right amount of the right brand of thyroid hormone will alleviate them on the whole.

 
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Old 08-15-2009, 05:20 PM   #3
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Re: Help a new Hashi Mom buy lab tests

Only if only I could, for I would.

She has since moved back home. While she was there and with that particular doctor, I tried to get her to demand the Synthroid. (Which would require a referral to the endo by her PCP, an appt with the endo that would not accept insurance and a four hour drive total - there and back). She was having such difficulties with the separation/divorce, college/work, health and moving out of her home - as well as the endo was two hours away (the closest one available but he, too, would not accept the military's insurance), she gave up all hope and did the best she could.
Now, we are trying to find a NEW endo since she has insurance that does not require her pcp's referral. I am going to buy some blood work so she can have the latest to hand to the new endo. But what?
We already know she has Hashi's, so what else? Ferritin, vitamins, other hormones, Lipids? Chem? Just thyroid panels? Antibodies? What would the doctor need to know coming in? The old blood work was just the run of the mill. Her pcp wrote notes all over it along with a new dosage of the levothyroxine!!
I am thinking of ordering THEM ALL, for once the doctor is aware she is having problems and has test results to prove it, they will need to be addressed.
I am appalled at her pcp's total lack of knowledge of Hashimotos and her arrogance that she knew what to do based only on the numbers on lab tests!! She was the one that also treated dd for depression with wellbutrin when it's common knowledge here and on thyroid sites that depression goes hand in hand with thyroid woes, especially hypothyroid issues.
My dd is living with me and her dad now and we are going to get her the best possible care.
Current blood work is the first priority. For she can bring it to the new endo appt. And the naturopath who is also an MD.

 
Old 08-15-2009, 05:38 PM   #4
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Re: Help a new Hashi Mom buy lab tests

Quote:
Originally Posted by starryGal09 View Post
Only if only I could, for I would.

She has since moved back home. While she was there and with that particular doctor, I tried to get her to demand the Synthroid. (Which would require a referral to the endo by her PCP, .
Hello, normally, PCP should be able to prescribe Synthroid. Also, they should be able to suppress TSH to an appropriate level.

Last edited by Summer2928; 08-15-2009 at 06:08 PM.

 
Old 08-15-2009, 07:40 PM   #5
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Re: Help a new Hashi Mom buy lab tests

Quote:
Originally Posted by Summer2928 View Post
Hello, normally, PCP should be able to prescribe Synthroid. Also, they should be able to suppress TSH to an appropriate level.
Not back then. It was a circus with her military insurance. The endo wanted daughter to take Synthroid exclusively, not a generic. But she couldn't get her PCP to all her to see the endo.


The PCP claimed she didn't see a "need" to prescribe the name brand and that..."they are the same."

OMG! I would love to enlighten that woman. But she has been on Permanent Pregnancy leave and left her practice up in the air.

Last edited by starryGal09; 08-15-2009 at 07:43 PM.

 
Old 08-15-2009, 08:07 PM   #6
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Re: Help a new Hashi Mom buy lab tests

Quote:
Originally Posted by starryGal09 View Post

The PCP claimed she didn't see a "need" to prescribe the name brand and that..."they are the same."
I feel for you. You should push for Synthroid and check TSH until it is properly suppressed. It is vital in your situation.

Last edited by Summer2928; 08-15-2009 at 08:26 PM.

 
Old 08-15-2009, 11:48 PM   #7
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Re: Help a new Hashi Mom buy lab tests

Each doctor has his own pet set of tests. Even though they might not always use the best possible ones, they likely wouldn't know what to do with any others you might've gotten. Endos are generally notoriously stubborn and egotistical, so they might take particular exception to any DIY attempts at testing on your part. Don't expect an endo to address any lipid or nutrition issues or testing, as they are rarely interested in symptoms. Most just want to get the "numbers" into "normal" range and let you languish there whether symptoms have been alleviated or not. I am most hopeful for your DD that she will find an exceptional gem of an endo, however. They're out there, just few and far between.

For thyroid, ideally you'd want TSH, free T4, and free T3 tests. Antibodies tests would likely be moot at this point, as she already knows she has Hashi's. I'm not an expert on treatment following thyroid cancer, but I believe that a measurement of thyroglobulin might be in order.

She might learn more of the valuable basics from Thyroid for Dummies (Dr. Alan Rubin) to prepare her for the endo visit. Please stress to her from us here in the trenches that she needs to learn everything she can possibly absorb about her condition. We don't always get what we need if we let all treatment decisions solely up to the MD.

 
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