Notes with Gena Lee Nolin --More FAQ on Thyroid

Thyroid Sexy FAQ's

by "Thyroid Sexy" on Monday, November 28, 2011 at 11:22am ·
How long have you had Hashimoto's disease, and what medication do you take?
I believe I was misdiagnosed for at least 20 years, based on symptoms I was experiencing over that time. I was diagnosed in 2009, and after being on Synthroid, I switched to Armour Thyroid. I am currently on Nature-throid.

What is Hashimoto's disease?
Hashimoto's is an autoimmune disease. Hypothyroidism is the result of it. Hashimoto's antibodies slowly destroy the thyroid gland by the autoimmune "attack." In the process, it is possible to experience symptoms of "hyperthyroidism" as the gland "struggles back to life", but eventually the gland becomes non functional, rendering one completely hypothyroid.
**The majority of thyroid illness is due to an autoimmune disease, whether it's Hashimoto's autoimmune induced hypothyroidism, or Graves' autoimmune induced hyperthyroidism**
**You can have Hashimoto's disease and test negative for the antibodies on blood tests. The only conclusive way to determine it is through a biopsy (ultrasound is recommended for any patient with Hashimoto's/hypothyroidism to determine if there are nodules, goiter etc.  'Most' nodules are benign, but malignancy needs to be ruled out)**

Who is Linda?
Linda is an administrator on TS, as is Mary Shomon. Just as I, they both have Hashimoto's disease, and Mary was instrumental in helping me after my diagnosis!

Resources to find good Dr.?
Thyroid Sexy has an ongoing list of patient recommended Docs under "Notes" at the top of the page.
Mary Shomon, Thyroid Patient Advocate FB page - Mary has a top docs list, google "Mary Shomon's Top Docs" ( Leslie is Mary's admin and moderator of her about.com thyroid forum/s)
The Coalition For Better Thyroid Care FB page under the "Resources" link. (Geri is the Executive Director of the Coalition page)
Call pharmacies and compounding pharmacies in your area. Ask if there are Docs who are prescribing Armour, Nature-throid, T4/T3 combos etc.
Word of mouth!

What tests do I need run? 
To start out:
TSH
Free T3
Free T4
Reverse T3 (Not all practitioners test this, ask)
For hypothyroidism - Thyroid Peroxidase Antibodies, Thyroglobulin Antibodies (Tests for Hashimoto's disease)
For hyperthyroidism - Thyroid Receptor Antibodies, Thyroid Stimulating Immunoglobulins (Tests for Graves' disease)
Iron
Ferritin
TIBC (Total Iron Binding Capacity)
Vit D
Vit B12
Adrenals (8 AM serum cortisol test at the minimum, 24 hr. saliva cortisol test at best)
Reproductive Hormones (If you are a woman who is still menstruating, the reproductive hormones should be tested 19 to 21 days past the first day of your last period)

Why does a Dr. diagnose and base treatment on the TSH test?
The TSH test (which stands for Thyroid Stimulating Hormone) is a pituitary hormone that sends thyroid stimulating hormone to the thyroid gland to 'get to work' - Generally, the higher the TSH goes, the harder the thyroid is working to produce hormone, but it can't do it's job. The TSH test became the "Gold Standard" test many years ago and it has caused many problems in the diagnosis and treatment of  thyroid disease. If it's very high, it can be a useful diagnostic tool. But if you're one of the millions whose TSH falls within the reference range, and your Dr. continues to treat you (or not treat you at all, because you're 'in range') based on that, you may have continuing hypothyroid symptoms. The best way to determine your thyroid hormone levels are the Free T3 and Free T4 tests. That is the actual circulating thyroid hormone available for cellular use. If you're seeing a Dr. who insists on diagnosing and/or treating you based soley on the TSH test, it's time to find a new Dr.

What is the difference between total T4 /T3 and Free T4/ T3?
The totals are the bound hormone. The frees are the unbound hormone circulating and available for cellular use. The frees are what you want tested.

What are optimal ranges for thyroid and other tests?
Labs can only reveal so much! How you FEEL is what is most important!
Everyone is individual, but it has been reported that many patients feel best when:
TSH - 1 or below (However, if you've had your thyroid removed due to thyroid cancer, the TSH should be suppressed)
Free T3 - mid range to above (some feel better when it's more towards the the upper end of the range)
Free T4- mid range or so

**Note - different labs use different reference ranges, so when posting results to get feedback from others, please include those**
Reverse T3 is a controversial issue. Some feel fine with high RT3 if they are able to keep their Free T3 and Free T4  higher in range. My doctor, Alan Christianson, is providing an ongoing video series for TS, if you look through the links under "Notes" you'll see a video he did specifically addressing high Reverse T3, and what may be some underlying causes.
Iron -70-100 (higher end is generally better)
Ferritin - 70-90
Vit D - 55-80 (55 is the lowest end of 'optimal')
Vit B12 - Higher end of the range, Most experts suggest 500 – 2000 pg/mL should be the target range
*Always ask for copies of any labs to keep for yourself*

What Thyroid Medication is best for me?
There is no best! What works for one person doesn't necessarily work for someone else. It's best to work with a knowledgeable practitioner who can help you determine, (often through trial and error) what medication is right for you.***It takes at least 6 weeks for medication to stabilize in the body, so you have to be patient, the same for dose increases, until you reach an optimal level where you feel well!***

Thyroid Medications:
Desiccated Thyroid also known as NDT or NT (Natural desiccated thyroid/Natural Thyroid)
Armour
Nature-throid
Wes-throid
Thyroid by Erfa(from Canada)
NP by Acella
(Compounded Natural Desiccated is also used by practioners to "fine tune" the amounts to patient need)

Synthetic T4
**There are patients who experience T4 to T3 conversion problems. T4 is the less active/storage hormone, T3 is the active hormone. We need that T4 to T3 conversion to feel and be well! If you have been on a T4 med only for any length of time, but still do not feel well, the addition of a Synthetic T3 med (below) may be helpful. Switching to a desiccated thyroid brand (above) has helped many as well, as it already contains both T4 and T3 (and T1 &T2) ** 
Synthroid
Tirosint (Liquid Gel Cap)
Levothroid
Levoxyl
Levothyroixine (Generic)
Eltroxin
Synthetic T3
Cytomel,
Liothyronine. (generic Cytomel)
SR T3 (Slow release synthetic T3)
(Compounded synthetic T4 and T3 is also used by practitioners to "fine tune" the amounts to patient need)

When should I take my thyroid meds?
This is very individual. Some take it in the morning, some split their dose, some take it at night. It is recommended that you take thyroid medication one hour prior to food or drink (coffee included) with a large glass of water, and at least 2 hours after food or drink, with a large glass of water. Talk to your practitioner about what may work best for you.

What Vitamins and supplements should I be taking? 
This is very individual. A good practitioner will help you decide what is best for you, based on your health needs. **Note** If you are in need of an iron supplement, it is advised to take Vitamin C along with it for best absorption. Iron and Calcium supplements should be taken 4 hours away from thyroid hormone replacement medication. Iron and Calcium supplements should also be taken at different times of the day, as calcium can hinder iron abosorption.

Should I be on a Gluten Free diet?
It is recommended that anyone with autoimmune thyroid disease should eliminate gluten from their diet. Talk to your practitioner about testing for gluten intolerance/Celiac's disease. You can also eliminate gluten from your diet for a trial run to see if you notice any difference. I sure did!
What about hair loss?
 Hair loss is a common problem with thyroid disease, even some of the medications can cause it. Many have found getting thyroid hormone levels in optimal ranges helps to restore growth. If you look under "Dr Christianson Videos" in the links here under notes, you'll find a helpful write up he did on hair loss.

Where can I find a list of hypothyroid symptoms?
The symptoms are vast!
T.S. has a symptom list and other info under "Notes"

 **ALL thyroid patients are welcome at TS! If you have Graves disease which causes hyperthyroidism, the following website is an excellent resource for you!**   http://elaine-moore.com/Home/tabid/36/Default.aspx

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