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Hello – Hopefully, someone who has had a thyroidectomy can jump in here with their experiences. It sounds like you have travelled quite a difficult road with your Graves’, so it’s possible your body is still going through the healing process. Here are a few other thoughts…
I tend to feel run down when my levels are falling – even when they are within the wide range of “normal”. You didn’t list prior values for FT3, but is it possible that your levels have fallen over time? My GP told me that our bodies tend to get used to running at one level, and when things change dramatically, that can require an adjustment period…even if our levels are still within the “normal” range.
Also, the “normal” range is fairly wide. It’s possible that while your FT3 is in the “normal” range, this might not be the OPTIMAL point for you.
It would also be worth getting a complete physical, just to rule out any other issues besides your thyroid. Hopefully, you have a GP who would be willing to work with you to get to the bottom of your fatigue issues.
We don’t advise going against a doctor’s dosing recommendation. However, you should definitely have an open dialog with your doctor if his/her recommendation seems to be going against your symptoms. It would be helpful to come armed with a symptom diary of specific issues you are having. For example, the fact that you are sleeping 10 hours a day and are still tired is good information.
As for adding T3, a few patients swear by this. However, there were a couple of patients at our last conference who had tried T3 and had swung seriously back over to the hypER side…so they were dealing with the frustration of trying to get their levels stabilized again. Adding T3 to your daily regimen is something that needs to be done under your own doctor’s close scrutiny and continually monitored.
Best of luck – definitely keep us posted!
in reply to: Treating the underlying autoimmunity #1065372Hi Corinne – If your levels are stable, you might just make a quick call to your doctor’s office to see whether you should change up your vitamin routine. I think this is a bigger concern for new patients who are still trying to get their hyperthyroidism under control. In that situation, adding that extra iodine is like throwing gasoline on a fire!
I actually take a multi that comes in a capsule, then I break open the capsule and mix the vitamin with juice. (You can also do this in a blender). I also have to take it with a bit of food, or I find that it upsets my stomach. I’m not thrilled with my multi, as it has a ridiculous % over the recommended RDA of certain nutrients. If you do find a better option, definitely check back and let us know!
in reply to: Treating the underlying autoimmunity #1065370Also – A quick note on Vitamins…those of us who are on anti-thyroid drugs need to look for a multivitamin that does not contain iodine, as this will reduce the effectiveness of our meds. Our thyroid glands will gobble up the iodine and turn it into *extra* thyroid hormone…which is the last thing that we need!
in reply to: POSSIBLE EFFECTS OF PTU #1065390Hi Sara – Sorry to hear that you are struggling, but glad that you found this site…this bulletin board is a great place to get encouragement and support.
I would put all of your symptoms in writing and provide a copy to your doctor. Joint pain is a possible side effect of PTU; however, since your doc knows your full medical history, he/she is in the best position to help you put the puzzle pieces together and determine a cause for your symptoms.
Joint pain can also potentially be a sign of hypOthyroidism. You mentioned TSH, but are you also having Free T3 and Free T4 tested? For patients who are on anti-thyroid drugs such as PTU and Tapazole/Methimazole, FT3 and FT4 are actually better benchmarks for determining dosing than TSH, as these tests measure the actual amount of thyroid hormone that is available to your body. TSH is a substance produced by the pituitary gland that tells the thyroid how much thyroid hormone to produce. However, TSH can remain suppressed for quite some time in patients who are treated with anti-thyroid drugs.
Another possibility is that once we have one autoimmune condition (Graves’), we are statistically slightly more likely than the rest of the population to end up with a second autoimmune condition.
As the members of this board can attest, you CAN get your life and your health back after Graves’! However, it does take a large dose of patience…and sometimes some extra detective work to figure out if there are other factors at play. Hopefully, you have a doctor who will work with you to get to the bottom of your symptoms and get you back on the path to wellness again.
in reply to: Kidney Stone… update 5/27 #1065542UGH, sorry for the extra complications.
” title=”Sad” /> Take care of yourself, continue to take things slowly, and definitely keep us posted! Sending {{{hugs}}} your way!Hi Shirley – Hopefully, someone who has been through the process of adjusting their synthroid dosage will jump in here, but I just wanted to mention that I *have* heard of gastroparesis being connected with hypothyroidism.
Your symptoms are certainly puzzling, with your labs the way they are. Perhaps your body is reacting to the significant cut in replacement hormone over the last 10 months. (Testing for Free T3 might help shed some additional light.) However, it sounds like you have a doc who will keep working with you to help find a solution, so that is good news. If you get some answers from today’s test, definitely keep us posted.
in reply to: Incidence Rate of Thyroid Dumping After RAI #1065420Just a couple of comments…
1. Your relationship with your endo is going to be a long-term one, so it’s definitely worth your time to find one who will treat you as a partner in your journey back to good health.
2. I haven’t seen much research specifically on the "dumping" phenomenon following RAI, but anecdotally, it appears to be fairly common. I have read of a few *very isolated* cases of thyroid storm following RAI treatment. When this happens, there are usually outside circumstances that were complicating factors (such as an underlying illness in addition to Graves’). If you do notice your symptoms of hypERthyroidism getting significantly worse following RAI, I would suggest checking with your doctor. The solution might be as simple as a temporary prescription for a beta blocker to control your symptoms…but it’s worth erring on the side of caution.
Hi Shirley – Sorry for the tardy reply, but I have been travelling and just got home last night.
The book that I mentioned only discusses chemosis in passing as one of the many signs associated with Thyroid Eye Disease. So yes, it could potentially be an indicator that the active stage is still ongoing, but this is an assessment that would definitely require a doctor’s involvement. Perhaps you could get an additional doctor’s opinion, as you seem to be getting conflicing advice on whether to proceed with the strabismus surgery now.
Also, FYI, as I was researching chemosis, I ran across a study that said that TRab testing (this measures antibodies against the TSH receptor) was useful in about 50% of patients in determining the course and severity of Thyroid Eye Disease.
Sorry for the ambiguity…unfortunately, as we’ve all learned, there aren’t many black and white answers when it comes to Graves’!
Hello – We got a great book on Graves’ Eye Disease at last year’s conference. Unfortunately, I don’t have the book with me at the moment, but I will check to see what it says about chemosis as soon as I can.
in reply to: OCTOBER CONFERENCE DATES, QUESTIONS #1065416Hi Shirley – I spoke to Peter on an unrelated issue recently, and he mentioned that the info should be appearing on the web site any day. The dates are definite…the Foundation is just waiting on the folks with the tech skills (which would NOT be me
) to get the information posted on the web site.Hope this helps!
Hello – Sorry to hear of your Graves’ diagnosis, but you have definitely come to the right place for support! I agree with Ski that a good old-fashioned "pro" and "con" list is helpful. In your first post, you mentioned a desire to get pregnant — if you are hoping to conceive in the near-term, that will end up influencing your decision. RAI is not recommended if you are looking to become pregnant within 6 months of treatment. I’ve heard some say as long as a year, but 6 months seems to be the most common approach.
Also, if you choose to stay on Anti-Thyroid Drugs, PTU is the preferred drug during the first trimester of pregnancy, due to the increased risk of a specific birth defect for women who take methimazole during the first trimester. The downside is that PTU comes with a higher risk of liver complications than methimazole. This is a *very rare* side effect, but is something that should be factored into your decision.
And, as you said, regardless of your treatment choice, you are smart to want to wait to conceive until your thyroid levels have been stabilized.
in reply to: Surgery affects on TSH #1065431Hi Cindy – {{{Hugs}}} to you and your family…and kudos to you for such a selfless act! I agree with Shirley that it’s worth it to get your levels tested before your September appointment. If your TSH is out of whack, then you can go ahead and adust your meds. If it’s *not* your thyroid, then you can at least start down the path of finding the real cause. You certainly *deserve* to feel good after giving this life-changing gift to your brother!
Hello – Sorry you are still dealing with all this frustration. The suggestion from ewmb to keep a symptom diary is great advice. Try to make it as specific as possible. Then if you can get copies of your labs, you might be able to correlate experiencing certain symptoms with having your levels in a certain place. Symptoms and labs don’t *always* correlate exactly, but at least it will give your doc some "food for thought."
On the T3 issue, sometimes as patients, we have to fight for that test. I was initially told that my insurance company wouldn’t pay for it. So I said I would pay for it out of pocket…but as it turned out, my insurance company *does* pick up the tab for this test. It would be unusual, but not totally unheard of, for your T4 to be in range and your T3 too high. If you can pinpoint that as the cause, then you can start discussing appropriate treatments with your doctor.
You deserve to feel well again, so I hope that you will keep fighting until you find a doc who will work with you to get to the bottom of your symptoms…and get you on the path to wellness again.
Best of luck!
in reply to: Confirming that posts have been restored #1065584Just bumping this post up, as I received an e-mail from a new member whose first post seems to have gotten lost in cyberspace. If there is anyone else in the same boat, *please* re-submit your message, and we will get it reviewed as soon as possible. There are several facilitators on this board who periodically check for new messages, so it would be unusual to have a new message go longer than 24 hours without being reviewed and posted. Thanks!
in reply to: Kidney Stone… update 5/27 #1065540mamabear wrote:Surgery done. recovery slower and more painful than I expected but hey it’s out! will post soon{{{Hugs}}} to you. I’m glad to hear that the procedure is over and done with! Best wishes as you go through the healing process.
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