[Liz1967]

in reply to: Have you found generic Synthroid to be inconsistent? #1184777

I have used Kroger pharmacy and the manufacturer has never changed in three years. Costco uses a different manufacturer and Walgreens also uses Lannett and has for years. I check the bottle each time I get a refill just in case. Should ask your pharmacy if they notify people of manufacturer change as it does matter. The difference between manufacturers is slight, has to be within government regulations, but some people are sensitive.

[Liz1967]

in reply to: Have you found generic Synthroid to be inconsistent? #1184775

I use generic levothyroxine made by Lannett. It is actually more bioavailable than Synthroid. The bioavailability is different by manufacturer but remains consistent within the manufacturer. The lab making the generic is listed on your prescription bottle so if the manufacturer has not changed, it should be consistent. You have as much chance of name brand being inconsistent as you do generic due to some kind of manufacturing error. In fact, in 2013 Synthroid had two recalls due to incorrect product labeling, leaving some people taking a higher dose. Tirosint, which is liquid levothyroxine in a gel cap, is supposed to help with absorption issues. As to why you are suddenly hypo, no clue. I always wonder if thyroid remnants are left after TT producing some hormone and they eventually die, similar to after RAI, leaving you more hypo but that is pure conjecture. Being hypo is miserable.

[Liz1967]

in reply to: New to Grave’s Disease/Please Help #1184760

Sorry you are having such a bad time. Wellbutrin works on dopamine, unlike the seratonin uptake inhibitor antidepressants. If you stop it suddenly, it can cause problems, but is usually easier to get off of than the SSRIs. Was postpartum depression a factor in this? Depression can cause anxiety too. If the hives are an allergic reaction, they can switch you to another antithyroid medication until things get sorted out as long as you are not pregnant.
Sounds like you have a lot going on and stress just makes it all worse. If it is Graves, it is treatable and you will get things adjusted and feel normal again, either with meds or a thyroidectomy or RAI. If it is thyroiditis, that will go away. Either way, these are fixable conditions. It is hard to think straight when you are hyperthyroid, but it is temporary, it is treatable. Hope you get things adjusted and feel better soon.

[Liz1967]

in reply to: 25 weeks pregnant – flu shot??? #1184751

I have never seen anything in the scientific literature about Graves disease as a contraindication to getting a flu shot, nor have any of my doctors mentioned this. I have had Graves for three years and get a flu shot every year. I would think any risk during pregnancy would be the same for any nonGraves pregnant woman.

[Liz1967]

in reply to: Blood tests before or after taking medication? #1184746

Your FT4 is highest in the two hours after taking the levothyroxine. FT4 measures how much hormone you have in your blood and since you are not producing it, it reflects how much levothyroxine you are taking. TSH remains stable regardless of eating, activity, etc. It may be affected by time of day, but the studies I have seen are conflicting, some saying lower in middle of night, some morning, some evening, some saying not at all, so i just get blood drawn about same time of day. I pretty much ignore the FT4 as long as it is somewhere within normal range. I would be consistent if you pay attention to FT4.
Levothyroxine has a half life of seven days, which means it is not totally gone for a month at least. Dosing daily or skipping a day will not matter as of the long half life. It may lower FT4 slightly on the skip day or next day as opposed to getting labs within two hours of taking it. It will not affect your TSH, which reflects more of your body’s demand for hormone over time.

[Liz1967]

in reply to: Whether to have a thyroidectomy #1184718

The remission I was referring to is remission of the Graves disease itself, where you can get off methimazole, which is less likely to occur in people with the eye disease.
Latest studies are indicating that thyroidectomy does hasten the burnout of the eye disease. In my case, the eye disease stopped within 8 months after thyroidectomy. Of course, the hyperthyroid stops immediately when you have no thyroid.

Here is one study. It basically says thyroidectomy patients had a higher rate of early deactivation of the eye disease than methimazole patients.

The Effect of Early Thyroidectomy on the Course of Active Graves’ Orbitopathy (GO): A Retrospective Case Study.
Meyer Zu Horste M1, Pateronis K1, Walz MK2, Alesina P2, Mann K3, Schott M4, Esser J1, Eckstein AK1.
Author information
Abstract
The aim of the work was to investigate the effect of early thyroidectomy on the course of active Graves’ orbitopathy (GO) in patients with low probability of remission [high TSH receptor antibody (TRAb) serum levels, severe GO] compared to that of continued therapy with antithyroid drugs. Two cohorts were evaluated retrospectively (total n=92 patients with active GO, CAS≥4). Forty-six patients underwent early thyroidectomy (Tx-group) 6±2 months after initiation of antithyroid drug (ATD) therapy, while ATD was continued for another 6±2 months in the ATD-group (n=46). These controls were consecutively chosen from a database and matched to the Tx-group. GO was evaluated (activity, severity, TRAb) at baseline and at 6 month follow-up. At baseline, both cohorts were virtually identical as to disease severity, activity and duration, as well as prior anti-inflammatory treatment, age, gender, and smoking behavior. At 6 month follow-up, NOSPECS severity score was significantly decreased within each group, but did not differ between both groups. However, significantly more patients of the Tx-group presented with inactive GO (89.1 vs. 67.4%, * p=0.02), and mean CAS score was significantly lower in Tx-group (2.1) than in ADT-group (2.8; * p=0.02) at the end of follow-up. TRAb levels declined in both groups (Tx-group: from 18.6 to 5.2 vs. ATD-group: 12.8-3.2 IU/l, p0=0.07, p6months=0.32). Residual GO activity was lower in Tx-group, associated with a higher rate of inactivation of GO. This allows an earlier initiation of ophthalmosurgical rehabilitation in patients with severe GO, which may positively influence quality of life of the patients.

[Liz1967]

in reply to: Whether to have a thyroidectomy #1184716

Regarding methimazole, people with TED have less of a chance of achieving permanent remission. Even without TED, only about 50% achieve remission, and some of those relapse leaving the rate of permanent remission less than half. Of those who achieve remission, some end up having to take Synthroid anyway because of the damage done to the thyroid. Levothyroxine is chemically identical to the hormone your thyroid makes. Methimazole is a drug, not made in the body, and has side effects.

[Liz1967]

in reply to: Whether to have a thyroidectomy #1184710

I had the TT partly to stop the eye disease. It was very active when i had the surgery and within 8 months after it burned out. I have posted elsewhere on this forum several recent studies indicating that the eye disease burns out faster, usually within 12 months, than on methimazole. I was on steroids before and after due to optic neuritis prior to the TT. As for recovery, everyone is different. I was sleepy the day after due to the general anesthesia, felt fine on third day. I think there may be activity restrictions, i really dont remember, like dont run a marathon for a couple of weeks! I felt good immediately, better than I ever felt on methimazole. It took a year of minor levothyroxine dose adjustments, mainly because of my endo. I started at 112 and I have been at 88 for past two years. A nurse practitioner in my internists office manages it now. Once the right dose was found, I went from feelng good to feeling totally like myself. My daughter in law who does not have Graves, just a hypoactive thyroid, will not wait for coffee so she drinks it right away and just takes a bit more synthroid. Coffee interferes with absorption, so as long as you are consistent and either wait or drink right away, you can adjust your dose accordingly. I would wait 30 minutes though on food. You can also take it at night as long as several hours after eating, or if you usually wake up at night to go to the bathroom, you can take it then. With no diseased thyroid to suddenly pump out more or less hormone, your hormone level is pretty stable. Weight has only been an issue when steroids are involved. Of note, I dose only by TSH, which needs to stay between 0.5 and 2 for those with no thyroid. That was my problem the first year with the TSH too close to 4. TSH came up from nondetectable to normal at first labs 2weeks post TT.
It has been so easy since the TT. No worries about thyroid storm, agranulocytosis, vasculitis, liver issues, frequent labs and dose changes and feeling hypo or hyper. If I did not have the eye disease, I could forget I have Graves. The eye disease is plenty to cope with by itself. I eat what I want, do whatever activities I want, sleep well, do not take a bunch of supplements, basically dont think about it.

[Liz1967]

in reply to: Cholesterol control post TT #1184728

I will be three years post TT in December. So far no cholesterol problems.

[Liz1967]

in reply to: Whether to have a thyroidectomy #1184704

I had total thyroidectomy after six months of TED and methimazole. So glad I did. Taking Synthroid every morning is no big deal, most of us take something every day, like vitamins, calcium, birth cntrol, allergy meds, etc. Only downside for me is waiting an hour before I can have morning coffee! I feel exactly like I did before Graves diagnosis. I believe it helped TED, as it burned out less than 8 months after TT and I could begin reconstructive eye surgeries shortly thereafter. Latest studies do show a connection between TT and TED burnout. No bone density issues so far. I am 67, can barely see my scar, no sag. I am three years post diagnosis, I am done with the necessary eye surgeries, I get labs once a year, my TSH stays between 1 and 2, and my levothyroxine dose remains at 88 micrograms. I had the thyroidectomy on a Friday morning about 11, was back home by 4, was at the mall the following Monday for lunch with friends. I have had 5 eye surgeries and the thyroidectomy was easier than any of those surgeries. Be sure you choose a surgeon who does a lot of them. You want all of the thyroid tissue gone, so someone who operates for thyroid cancer is good. Absolutely no regrets.

[Liz1967]

in reply to: Do You Have Questions About Thyroid Eye Disease? Dr. Raymond Douglas to Host a Q&A #1184702

Dr. Douglas is amazing. He has done a lot of research on Graves. He did my orbital decompressions as well as lid surgeries.

[Liz1967]

in reply to: Rituximab #1184677

This is from March 2002 Thyroid journal. Not much to be found about inactive ophthalmopathy except that radiation is not very effective. I believe it should be done within six months of onset of TED. I was a bit past that window by two months but still saw positive results. I know a Graves patient who had bilateral decompressions to stop optic neuropathy, which did not help. She then had orbital rafiation which did stop the neuropathy. I had it hoping to stop diplopia progression, which it did, but did not reverse it. Maybe if I had it sooner, it would have. Docs here were not recommending it so I traveled to Emory in Atlanta. I was determined, as another poster said, to wrestle this thing to the ground! I am so happy to feel normal and after my last eye surgery, i see 20/20, single vision except in extreme left and right gaze. One eyelid a little lower than other one but look otherwise normal and eyes a bit dry, but other than that, I am done with this nasty disease. Finally.

Here is the article:

Orbital radiotherapy is a well-established method of treatment for severe Graves’ ophthalmopathy, because of its anti-inflammatory and locally immunosuppressive effects. It has been used for 60 years. Conventional external x-ray and cobalt therapy have been abandoned, and most groups now use supervoltage linear accelerators (4-6 MeV). Cumulative doses may vary, but in most studies a cumulative dose of 20 Gy delivered over 2 weeks was utilized. Successful outcome depends on the selection of patients, because recent onset, active ophthalmopathy is much more favorably affected than longstanding, inactive disease. Inflammatory signs, recent onset eye muscle dysfunction, and optic neuropathy respond well to orbital radiotherapy, while proptosis and longstanding eye muscle restriction respond poorly. Overall, favorable responses have been reported, with few exceptions, in approximately 60% of cases. Combination of irradiation with high-dose systemic glucocorticoids provides better results than either treatment alone. Orbital radiotherapy is well tolerated and safe. Preexisting retinopathy (e.g., in patients with diabetes) is a contraindication to this treatment for the risk of further retinal damage. No case of radiation-induced tumors has so far been described after orbital radiotherapy for Graves’ ophthalmopathy.

[Liz1967]

in reply to: new to this- need help supporting loved one with Graves #1184690

Anti thyroid meds make a lot of people feel crummy, at least until they reach remission and that could be years. My endocrinologist assured me she could manage me on 5 mg of methimazole. She was wrong. I felt bad. I saw a surgeon on my own, she did not recommend it. Surgeon told me eye disease would burn out a year after TT and Synthroid easier to dose to feel good. He was right, at least in my case, and I immediately felt sooo much better. So if she is aware of the risks and the drug makes her feel bad enough to risk rampant hyperthyroid, maybe the meds are not for her. She could have thyroidectomy or radiation, although if she has eye symptoms, RAI not a good choice. You may love her doctor but she apparently does not, so to get her in a less dangerous state, help her explore other options besides staying with a plan and a doctor she is resisting. Maybe if she sees a quicker end to feeling bad she will be able to resume the drugs long enough to get her in shape for a definitive end to the hyperthyroidism.

[Liz1967]

in reply to: new to this- need help supporting loved one with Graves #1184686

That is rough. It is hard to think straight if your thyroid hormones are out of whack. You might suggest she consult a thyroid surgeon to explore thyroidectomy, which is a shorter process to feeling normal than the anti thyroid drugs. It does remain her decision, all you can do is make suggestions. Remaining hyperthyroid can be dangerous for her. If she doesnt like her doctors, encourage her to find a different endocrinologist or a surgeon. There are options with this disease and people do get back to normal. I certainly did. It is always hard to get an unexpected diagnosis, but she certainly isnt alone. You can support her, but she has to choose her course and the medical professionals she feels comfortable with. Good luck. This forum is a good source of legitimate science based information so you have come to a good place for help.

[Liz1967]

in reply to: TT and eye disease symptoms #1184599

Early thyroidectomy does seem to shorten course. I just read in the GDATF August newsletter that the new Guidelines are recommending thyroidectomy for people with active moderate to severe TED.

Horm Metab Res. 2016 Jul;48(7):433-9. doi: 10.1055/s-0042-108855. Epub 2016 Jun 28.
The Effect of Early Thyroidectomy on the Course of Active Graves’ Orbitopathy (GO): A Retrospective Case Study.
Meyer Zu Horste M1, Pateronis K1, Walz MK2, Alesina P2, Mann K3, Schott M4, Esser J1, Eckstein AK1.
Author information
Abstract
The aim of the work was to investigate the effect of early thyroidectomy on the course of active Graves’ orbitopathy (GO) in patients with low probability of remission [high TSH receptor antibody (TRAb) serum levels, severe GO] compared to that of continued therapy with antithyroid drugs. Two cohorts were evaluated retrospectively (total n=92 patients with active GO, CAS≥4). Forty-six patients underwent early thyroidectomy (Tx-group) 6±2 months after initiation of antithyroid drug (ATD) therapy, while ATD was continued for another 6±2 months in the ATD-group (n=46). These controls were consecutively chosen from a database and matched to the Tx-group. GO was evaluated (activity, severity, TRAb) at baseline and at 6 month follow-up. At baseline, both cohorts were virtually identical as to disease severity, activity and duration, as well as prior anti-inflammatory treatment, age, gender, and smoking behavior. At 6 month follow-up, NOSPECS severity score was significantly decreased within each group, but did not differ between both groups. However, significantly more patients of the Tx-group presented with inactive GO (89.1 vs. 67.4%, * p=0.02), and mean CAS score was significantly lower in Tx-group (2.1) than in ADT-group (2.8; * p=0.02) at the end of follow-up. TRAb levels declined in both groups (Tx-group: from 18.6 to 5.2 vs. ATD-group: 12.8-3.2 IU/l, p0=0.07, p6months=0.32). Residual GO activity was lower in Tx-group, associated with a higher rate of inactivation of GO. This allows an earlier initiation of ophthalmosurgical rehabilitation in patients with severe GO, which may positively influence quality of life of the patients.

[Author]

Posts