I have noticed several of you mention that you have Hashimoto's. My Rhuemy found two types of elevated antibodies against my thyroid at my first visit six months ago and diagnosed me with Hashi's along with SLE. My TSH was and remains normal around 1.0.
My G.P. seems unconcerned and only wants to see me for an annual physical. My Rhuemy will probably throw on the TSH test if I ask him during my quarterly bloodwork. He didn't request it last time.
Do I just wait for these antibodies to continue to attack my thyroid until I become hypothyroid? I have read that some people choose to get treated with low levels of (synthroid?) and it lowers the antibodies attacking the thyroid.
I also read that going gluten free can reduce the antibodies as well. I asked my Rhuemy about that and he thought it was not unreasonable to give it a try. It is a pain though.
I would love to hear any advice.
The latest research supports early treatment with synthroid regardless of TSH levels. I had no luck with diet or supplements. If you are getting treatment for Lupus, you will likely do better than I in regard to the Hashi. For whatever reason, the doctors I have found are resistent to treating the autoimmune component of this disease. My disease continues to progress, but my thyroid specific symptoms are better. I wish you well.
I've had Hashimoto's for over 10 years, and my anti-body levels are still elevated everytime. My synthroid level is at 185, and has been for about 2 years, but we'll probably be moving on up higher before long. I also have to take cytomel at 20mg a day, to keep the t4 (??) level up (I can't remember what's for what hardly anymore... sigh). Anyway, since I've been on plaquenil, I was hoping for a reduction in the levels of *all* antibodies in me. No such luck thus far, but I go next Monday the 7th to the rheumy for more follow-up, and we'll see then.
If your gp doesn't want to do it, ask the rheumy to do it. Do the *full* battery though, including fasting lipids, so they get an accurate picture. Just doing TSH and T3 doesn't give the whole picture. You need a couple others (the names escape me at the moment... sigh). Be sure and have the rheumy share the tests with your gp, and have the gp share their tests with the rheumy. If you don't tell them everytime it seems, they tend to forget...
I have Hashi's too. It is possible that you are not hypothyroid with your Hashi's yet but you should have your hormone levels checked because TSH does not tell the whole picture... or even a good partial one. The TSH is only the thyroid stimulating hormone that your pituitary thinks your body needs and it can be off. I was badly hyp with a TSH of around 2.7 but my doctor dismissed my hypo symptoms and did no further testing. Your doctors should be looking at your T4 levels, and more specifically, your Free T4 levels which shows the T4 available to your body (to be converted into the useable T3). You should also have your T3's checked; Free T3 is most important. Hashi's patients usually report feeling their best when their T3 and T4 is at about 75% or the normal reference range; the reference range is waaayy too broad for Hashi's patients.
If your doctor is just looking at your TSH, they will probably be reluctant to do more testing or give you any meds because your TSH is about what docs consider perfect... and many live and die by the TSH test. This video emphasizes that fact... and is disturbingly funny at the same time: http://tpauk.com/articles/2509-our-h...ible-tsh-test/
I have read in a couple of places, although I can't remember the sources, that being treated with T4 (synthroid), and possibly T3 (like cytomel), can slow the progression of Hashi's. If your Free T4 and T3 are around the 75% point of the lab's reference range, unless you have hypo symptoms, you would not want to treat with synthrod to slow the disease because the synthroid could give you hyper symptoms which can cause a bunch of problems.
... the problem is that Hashi's and SLE have a bunch of the same symptoms so it's hard to tell what is causing what.
Thanks everyone for responding. I guess I need to print out some research from valid sources to take to my GP so I can get him to run more than just the TSH. These autoimmune diseases are so darn complex!
Hi Nicole - I hope you are doing a bit better - I also have hashimotos for about 9 years now. NVSmom is right - at this stage if your TSH is at 1.0 this is within the normal range but to get a good image of what your thyroid is doing the doctor needs to test for T3,T4, TSH and if they really want to do it right add reverse T3 aswell. Most gp's will only prescribe T4 medication like Eutroxsig which is the non active hormone however if your thyroid once it receives the T4 meds does not convert that using T3 your body wont metabolise correctly and you would still have symptoms. so I guess at the very minimum T4 and T3 needs to be tested. Also true is that hashi's immune system issue never gets treated so the attack on the thyroid continues while you take (in most cases) t4 meds. I have asked so many times for NDT (natural dessicated thyroid hormone) which is not the synthetic one I am on currently but not many doctors (that bulk bill) well I have not found one yet will prescribe this medication and its prescription only so go figure -sigh.
ANyway I guess they should keep monitoring you antibodies and TSH and if your symptoms get worse maybe a very low dose 25mcg is worth trying (if gp recommends it) but ultimately going on the
t4 meds could send you hyper (severe anxiety, body temp issues etc) which you would not want as I believe its worse than hypo - so get them to keep monitoring every 6 months or so unless your symptoms change severely.
for a natural suggestion kelp and iodine are very important to correct thyroid function so eat more oily fish and or get yourself some herbal medicine from a naturopath or health food store to start treating / and or preventing thyroid destruction.
goodluck and I hope you don't have to suffer with this illness as well as the lupus! :)