Thank you everyone. My wife read all the current posts last night and was on the phone with her sister immediately. Yes, Vitamin D supplements...even though she is outside running or playing with our boys nearly every day. She's always been told she has to be on BC in order to manage the endometriosis. This is a great thread for me because I'm finally starting to understand what is going on with my wife. We have received more information in this one thread than from any clinician we've ever seen. We at least are in a position to start asking the right questions and being able to be involved in the decision making about my wife's care. Thanks to all.
Iamask... I would also be prepared to have your clinician not acknowledge anything autoimmune. It took over 15 years to get a Dr. to FINALLY help me with my Hashi's... 15 years of terrible exhaustion, and me not having a clue as to what to do about it. Still a little bitter about it! Getting to an endocrinologist was for me ideal. My antio bodies were through the roof... my Dr. still wanted to ignore it... and wait until I managed to completly destroy my own thyroid. Seriously, I felt like he was saying, your cholesterol is out of control, and you have chest pain, and we can see blockages... we'll just wait 'till you hit the floor before we do anything. I pretty much shamed him into referring me to an endo. When I called and explained my symptoms to the RECEPTIONIST... first words out of her mouth... "oh, do you think you have hashi's? Yeah, we can help you with that..." it was so weird to have someone acknowledge the problem, and not tell me it was no big deal...
Just wanted to mention - I have endometriosis and by far the best thing I did for myself was get off of ALL processed food and grains, and reduce carb intake (I was lower carb but not low carb). It was a miracle.
I wish your wife the best!!
Since your wife must be on BC pills make sure she has her[B] free[/B] T4 and [B]free[/B] T3 checked. The estrogen in the pills MAY mean she needs more thyroid meds because estrogen binds the thyroid hormone making it inactive. TSH, as well as total T4 and total T3, can come back normal but some of the hormones levels shown by these tests are not available for use at a cellular level.
As an example, I am on HRT for perimenopausal issues. When looking at my thyroid tests, my TSH is almost undetectable, my total T4 and total T3 are out of their respective range HIGH. These tests would suggest I am hyPER and in need of a med decrease
However my free T4 and free T3 are about midrange in their respective ranges. This shows that a portion of my total thyroid hormones are being bound and not usable.
Her OB/GYN just checks thyroid function and tells her if it is high or low. She is going to request the full report now so that she can better understand. He only tests it once a year but has her on the synthetic.
A new doc is in her future.
IAMASK - I didn't see the comment before that your wife was told she needs to be on BC to manage the endometriosis.
I was told the same thing.
Now, everybody's case is different and I won't say she should get off it, but getting off of the BC was key for my recovery. I was initially put on BC to manage the pain but the pain only got worse; since endometriosis is generally an estrogen-dominant condition, taking the estrogen in pill form isn't really a great thing. I know the docs figure by suppressing ovulation they are preventing the growth of wayward endometrial tissue, or something like that... Anyway, I would urge her to do more research into this matter.
I have been off birth control since before my diagnosis. I had only one surgery (which served as both to diagnose and to remove some of the tissue), which was 4 years ago. So it is possible to live with this condition and do well. Again, everybody's case is different, I won't pretend to know what it's like for your wife since I know some women can have stage 4 and no symptoms, and some women have stage 1 and are debilitated. It's unpredictable. Just do lots of research!
Glad you're looking into changing docs. Once a year for checking on thyroid levels is not nearly enough unless you've been on the same med levels and have lower symtpoms for a long time.
My best suggestion is get yourself fully informed. The more you know the better your questions can be and the better able to interview doctors you will be. My rule of thumb is if the doctor gets irritated when you ask questions regarding information you've learned, they're not the right doc for me!
And just to add it's completely awesome you're so involved in the process! Having family support is super important and it can be difficult when you're suffering and exhausted and everybody around you looks at you like you should just buck up and deal. :-)
Just to affirm Minxxa's recommendations. I, too, went 5 years without a diagnosis, constantly being told that I was 'normal' when I was hypothyroid. It is essential to be pro-active in your care. Get copies of ALL bloodwork and tests and retain them in a file for yourself. If a doctor has you on thyroid meds and doesn't schedule regular check ups (mine are every 4 mos), find another doctor.
If you take any other hormones--birth control, replacement, etc.--you must get FREE T4 and T3 tests, not just total. Otherwise you don't know how much of your thyroid hormones are available to you.
Some doctors don't bother testing antibodies for Hashimoto's because the treatment is the same as for any other type of hypo. Also keep in mind that the blood test is not conclusive. If the antibodies don't happen to be attacking the thyroid when the blood is drawn, you may not show enough for a diagnosis.
I have nodules, and when one was large enough for biopsy, the pathologist diagnosed Hashimoto's. After he got the results, my endo commented that he would not have made a diagnosis based on my bloodwork because the level was too low, but biopsy results are conclusive.
On diet--I feel best eating primal (no grains, starch, sugar, etc.), but the number of carbs is, I think, unique to individuals. I know a lot of folks who cannot lose unless they stay <20g carbs a day, but I actually lose best on closer to 30g (all veggies). In fact, if I go too low with carbs, I actually feel ill. However, in order to lose, I have to eat VERY low calorie, regardless of how clean and primal my eating is. Of course, I'm also post-menopausal, and that plus the hypo, really compromises my metabolism. But I[I] can[/I] lose and have been losing regularly.
Has she tried supplementing with iodine? I have read a lot of great things about iodine addressing the underlying issues (not just the symptoms) of hypothyroidism.