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in reply to: All of a sudden I’m hypothyroid #1185697
Has anything changed for you in the past six months? Gained weight? Menopause, perimenopause or hormone replacement? Started new meds, like PPIs (Nexium, etc) for example? Anything that might affect your absorption of levothyroxine or your body’s requirements for it could make you trend hypo.
in reply to: Thyroid problems causing “insect bites”? #1185683Could be a contact, food or even inhalant allergy. If the eruptions skip your trunk (areas not covered by clothing) and are only on exposed areas like arms, legs, I would go for contact or even photosensitizer (allergy that appears when exposed to sunlight, basically) or of course insect. Have you changed things like laundry soap, nail polish, cleaning products. A dust contact allergy can hit exposed areas too. It is so hard figuring these things out, good luck.
in reply to: Methimazole side effect – terrible joint pain #1185671https://www.ncbi.nlm.nih.gov/pubmed/31134536
This journal article describes myalgia, arthritis, etc as “minor” adverse effects of methimazole. I am pretty sure people having these side effects are not considering them to be minor!
As a suggestion, you might schedule an appointment at the University you mentioned with an ENT surgeon who does a lot of thyroidectomies. I gave up on methimazole after six months and have never regretted having a total thyroidectomy.in reply to: Synthroid to generic -what to expect? #1185664I have been on generic levothyroxine since my TT 7 years ago. Last year the manufacturer switched from Lannett to Amneal but I noticed no change in my TSH. There is a tiny difference in absorption rate between manufacturers and there was one study indicating the brand name to be more consistent batch to batch but any difference is very small. Remember your body at different times has different requirements for T4, even when you had a thyroid, and this may have more of an effect than any minor inconsistency. Staying on one manufacturer, whether generic or brand, is best and you can adjust the dose accordingly. I notice a slight seasonal change (my TSH runs lower in winter), dose varies if I gain or lose weight even just 10 lbs, and of course if I have to take PPIs like Nexium, stop or start morning coffee drinking, or any of the other things that interfere with absorption. The secret is consistency. For example, if you always drink coffee in the morning, even if you wait an hour after levo, know that it reduces absorption and you may require less levo if you quit coffee. Bottom line, the generic is way cheaper (I pay zero thru insurance and it runs $12 without) and I have found it to work just fine. I have been on 88 micrograms since 6 months postop TT.
in reply to: TED surgery – kaiser? #1185659Dr Raymond Douglas, one of the top Graves oculoplastic surgeons in the country, is in Beverly Hills but as far as I know, he is not in any insurance network. He did my surgeries and he is truly amazing.
in reply to: Breast Cancer Radiation Therapy and Graves #1185646Radiation for breast cancer can cause fatigue in people with or without Graves although it usually only lasts for several months. I had orbital radiation for 14 days for Graves ophthalmopathy with no ill effects but the dose of radiation must be much smaller than for cancer. Maybe your hormonal levels have changed too. I do not think Graves has anything to do with it unless your thyroid levels have changed putting you in the hypothyroid range.
in reply to: TED or Glaucoma #1185631Your intraocular pressures can rise due to increased size of eye muscles from TED. As muscles thicken, they take up more space in the orbits causing pressure on the eyeballs. If this is the reason for the increased pressure, it will return to normal after more space is created in the orbit via orbital decompressions. People with TED whose eyes do not bulge forward very much (thus also creating space) tend to have elevated pressures. Your ophthalmologist can determine if your glaucoma is from this increased pressure from TED or from the usual causes of glaucoma like narrow angles, etc. If you have doubts, see an oculoplastic surgeon who can check for muscle enlargement and/or a glaucoma specialist. Latanoprost has the great side effect of making your eyelashes grow!
in reply to: High TSH and High FT4 #1185620I am 5 years post TT and I have not had free Ts tested for several years. I could have high FT4 and a high TSH or on the same dose of levo, a low FT4 with the same TSH. If I dosed by FT4, I would be changing my dose constantly. It was of no use to me. After thyroidectomy, your FTs may not be reliable. The following is one of the best articles I have read regarding thyroid hormone replacement. The physician authoring the article also suggests that FT4 monitoring post thyroidectomy is not useful after the initial postop period. Hope it helps. You have to go by how you feel.
https://www.ucsfcme.com/2012/slides/MFC13003/14SchneiderControversiesInThyroidDisease.pdfin reply to: 21 years post RAI and symptoms of Graves return #1185605As you get older, your body changes and your thyroid requirements do also. Your symptoms are more typical of hypo but your labs indicate hyper. Everyone is different. I lost some weight, only ten pounds, but I felt like I was hypo when in reality I was hyper so you have to go by the labs. It seems unlikely but not impossible your “dead” thyroid would reactivate. That being said, thyroid cancer is treated by thyroidectomy not RAI because they have to be sure all the thyroid tissue is gone totally so it can happen that your thyroid is suddenly producing hormone. Your female hormone status could be changing too as you approach perimenopause. Maybe you stopped taking something that interfered with absorption, such as proton pump inhibitors. Hopefully your endo can sort it out.
in reply to: New here…allergies to Methimazole and questions #1185609I had a thyroidectomy six months after my Graves diagnosis six years ago. Best decision I ever made. The eye disease, which began within two weeks of starting methimazole, burned out pretty rapidly after thyroid removal, which several studies have found to be the case. The surgery was really easy, outpatient on a Friday, out to lunch with friends on Monday. It was done by an ENT surgeon who did many thyroidectomies. I saw a neuroophthalmologist at first but the majority of my extensive eye care was with an oculoplastic surgeon , so my best advice would be to find a good oculoplastic surgeon and see him. Hopefully you will avoid the eye involvement.
Thyroidectomy does make it much less likely to get the eye disease, but it does happen. Having had TED and undergone multiple eye surgeries, my advice would be to find an oculoplastic surgeon who is very familiar with Graves. This ophthalmologist would be the one managing your care should the eye disease progress. This may mean travel to a larger city or a university based medical center, but experience with thyroid eye disease is vital. The most important decision you will make is your choice of ophthalmologist. This disease does its own thing and about all you can do is be patient and find the most experienced eye docs you can.
in reply to: Orbital Decompression #1185045I had my orbital decompressions done by Dr Douglas at Kellogg Eye in Ann Arbor, Michigan. We met his fellow, Shannon Joseph, who is now an attending surgeon there. Since she trained under Dr Douglas, she most probably does the procedure in the same manner he does and she might be a good choice. We were impressed with her. We drove to Ann Arbor from Cincinnati. You are close to Indianapolis and I know Dr Douglas recommended a surgeon there for emergency follow up should I need it after his move. You might ask his office who he recommends in Indianapolis, I forgot the name he gave us. I email Dr Douglas with any issues and that has worked well so have not needed to see anyone else.
in reply to: Blood Pressure problems and Graves Disease #1185594Once my hyperthyroidism was resolved with thyroidectomy, I have had no BP issues. However, long before Graves, I had two benign issues that affected my BP. White Coat Syndrome, where the minute you hit the doctors office your BP goes up. This is resolved by not having it checked in doctors office, or if you do, do it toward end of visit not at beginning. On the other end, I have postprandial hypoglycemia. I drink no sodas or juices, no waffles, syrup, etc because two hours after ingesting a sugar load, my glucose plummets making me dizzy and BP drops. Also, stress of any kind raises BP but I got my BP down to 100/60 in dentists office awaiting a tooth extraction by doing yoga breathing! So there is a rather significant mind/body component.
So if your thyroid hormone levels are in range, there should be no BP issues related to Graves.
in reply to: t3 and t4 in range, TSH low #1185586There are lots of drugs beside anti-thyroid drugs that can cause hair loss. This article lists some of them, in case you are taking any other meds.
https://www.dovemed.com/diseases-conditions/drug-induced-alopecia/
I was only on methimazole for six months before choosing thyroidectomy. Maybe wait to see how it goes for a bit longer if you are trying for remission before choosing definitive treatment like RAI or thyroidectomy. I chose TT because I had the eye disease too.in reply to: t3 and t4 in range, TSH low #1185584Are you on methimazole? It is a drug and one of its side effects is hair loss, irregardless of thyroid hormone status. Hypothyroidism causes hair loss, but if your free Ts are normal and TSH suppressed, this would not indicate hypo.
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