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in reply to: Antibodies still HIgh #1185132
Generally they will not do strabismus surgery if you require a small amount of prism because of the risk of you ending up exotropic (eyes going out rather than in). The problem with not having orbital decompression is that if the disease recurs at a later date, and this can happen years down the road, you can end up having to have decompression after your muscles and lids have been repaired and this can affect the results of those surgeries. On the other hand, orbital decompressions, especially if not done laterally through the lids, can worsen the double vision. Hard decisions. You are wise to get second opinions. Choose your docs carefully! Good luck!
in reply to: New diagnosis of graves with heart problems #1185231The best advice I can give you is to find the very best specialists you can, even if it means traveling to a bigger town. You need an endocrinologist who sees Graves patients, not just diabetics. I would recommend finding a surgeon who does a lot of thyroidectomies and have a consultation with him/her, in case you choose that route which will take hyperthyroidism off the table. I would also see an ophthalmologist or better yet, an oculoplastic surgeon very familiar with Graves for a baseline eye exam. Do not worry about the hair loss right now as that will resolve when your thyroid hormone levels normalize. There is no magic diet or supplement that is going to change things. There is some evidence for selenium supplementation, but some of the studies recommending that are in places with selenium poor soil. It did nothing for me, but wont hurt either. There are other Graves forums out there that would have you believe that getting rid of air fresheners or going on dairy/gluten/sugar/whatever diets are going to give you control over Graves. It is tempting to hope for that and I fell into that when first diagnosed. Trust medical professionals and science based evidence. This forum is good for getting fact based advice. Best of luck.
in reply to: Failed Radioactive Iodine Uptake Test #1185201Have you considered thyroidectomy? It is a definitive cure for hyperthyroidism and the hypo is easily managed with hormone replacement. It also tends to lower antibodies as the target, the thyroid, is removed.
in reply to: Dose change symptoms lessened by tranquilizer? #1185222Sue, to check for hypoglycemia, you need fed not fasting blood glucose. You eat high sugar meal, then blood drawn every hour. Mine plummets at hour two. I cannot even eat Total cereal without nearly passing out a couple hours later. I get really anxious, then dizzy, etc. Thanks Rob for the keto flu info. I had heard of it but since the only symptom I get is depressed mood, I never connected it to what I heard about keto flu.
in reply to: Dose change symptoms lessened by tranquilizer? #1185219I love how I feel and the weight I start to lose on less than 20 g carbs a day – for the first two weeks. Then I crash into major depression. I do practice yoga, exercise and try meditation (I fall asleep), but less than 50 g carbs a day and I am in trouble. I do think dopamine plays a big part for me in this process as SSRIs depress me whereas Wellbutrin works (dopamine). I learned this when I quit smoking 15 years ago. As I am reactive hypoglycemic, I have never done soda or candy or any kind of simple carb, so low carb works great for that but bad for mood. Maybe next time I need to lose some weight, I will try slowly reducing the carbs rather than starting out low. You are right that you do not need carbs for serotonin, but if you have been using carbs and suddenly stop, that would be a disruption if you are doing nothing else to replace it.
in reply to: Dose change symptoms lessened by tranquilizer? #1185217The mind is powerful. Are you anxious from anticipating problems with a dose change or is the dose change actually causing the anxiety? I have only had a couple dose changes but I was hypervigilant looking for the slightest differences in how I felt, which was anxiety provoking. Long before Graves, my TSH at yearly physicals would vary by 1 or 1.5 points and I never thought anything of it, but if it varies on Synthroid, we get all concerned. Also, you need carbs to make serotonin in the gut so if you have drastically cut carbs, that may be affecting mood. If the anxiety meds help, why not use them.
in reply to: Question regarding Endo visits since TT #1185171If weight loss moves tsh upward, just take more levothyroxine. With methimazole, you have a diseased thyroid chugging out thyroid hormone erratically. With levo, what you take is what you get, no thyroid to suddenly mess you up. My dose has been the same for four years, but my weight has never changed except when I take steroids, which is short term. Everyone tends to blame every bout of fatigue, headache, muscle pain, etc on thyroid, forgetting those things happened before Graves but tended to be ignored as most people do not feel totally wonderful every day! If I started focusing on a symptom, it took on a life of its own so I learned early to go by the numbers and not blame my normal for me allergies, headaches, etc on thyroid. So when I say I feel totally normal, I mean I feel exactly as I did preGraves, with my occassional migraines, joint pains, bouts of insomnia, dry skin, down days, etc., all normal for me!
I have been on Lannett labs levothyroxine all along but would love to switch as of price fixing thing they have going on with Mylan causing price to rise from $2 to $13! All I could find on bioequivalence between manufacturers is this excerpt from a 2006 article, but if your manufacturer is listed, maybe it will give you some idea if you will be getting slightly more or less. For sure, get labs six weeks after switch to see if any effect.
“For example, the Sandoz generic LT4 product is 12.5% more bioavailable than Synthroid® (Abbott Laboratories, Abbott Park, IL), but is 2.3% less bioavailable than Levoxyl® (King Pharmaceuticals, Bristol, TN).[9] Synthroid® is 9% less bioavailable than the generic product from Mylan Laboratories, and 3% less bioavailable than LT4 Lannett (the generic version of Unithroid®, Jerome Stevens Pharmaceuticals, Bohemia, NY).[9] “
in reply to: Question regarding Endo visits since TT #1185169Rob, that is really interesting and makes perfect sense actually. All about metabolism rather than weight. Even resting muscle burns calories. Maybe that is why they are figuring BMI into the formula.
PTU is a drug, not a hormone that your body produces like Synthroid, and as such can produce side effects like vasculitis, agranulocytosis, arthritis, etc so it is not totally innocuous, nor does it cure hyperthyroidism unless remission is achieved. It sounds as if it is working well at present for your wife and except for the frequent blood tests, is causing her no problems and controlling her hyperthyroidism. Should that change, thyroidectomy is a definitive option. I was miserable on drug therapy and opted for a thyroidectomy six months into the disease. That was four years ago. I take a thyroid hormone replacement pill every morning, get blood tests once a year and feel totally normal. Keeping thyroid levels normal is easier on Synthroid than antithyroid drugs as you have no erratic thyroid interfering with things. So even if her current therapy stops working, she can opt for thyroidectomy or RAI if no eye issues.
in reply to: Lid Retraction Surgery #1185180My lids are not numb. Actually, I do not think they were numb right after the surgery either as I could most definitely feel the sutures. You are really careful not to touch or rub the lids postop so there may have been some insignificant loss of superficial sensation without noticing it because you are not touching your lids. Numbness should not be a concern. More important concerns are postop position of lids and future retraction and swelling if the eye disease has not truly burned out. Best of luck! Do not feel rushed into any decision you make with Graves. Lids are usually the last reconstructive eye surgery and can be done at any time, even years later.
in reply to: Question regarding Endo visits since TT #1185166The average replacement dose of levothyroxine is 1.6 micrograms/kg/day. I always have to look up the conversion of kg to lb, can never remember my weight in kg! They talk about factoring in things like BMI, age and sex, but it remains a pretty good rule of thumb. I have always dosed by TSH as I have found FT4 to kind of do its own thing, not at all in sync with dose changes or TSH. My surgeon did my labs and dosing for first six months and he was spot on, whereas my endo was not much help.
in reply to: 12 year old with GD and moderate / severe TED #1185191I had severe TED and had both orbital radiation and orbital decompressions. I was losing vision also. Sometimes radiation is used after decompression failure. Orbital radiation carries some risk and is not generally used in the very young but each case has to weigh risks vs benefits. I had IV steroids, followed by thyroidectomy, then orbital radiation and oral steroids, and a year later, orbital decompression. The most important thing to do is to find ophthalmologists very experienced with Graves. If you are near one of the centers known for this, like Kellogg in Michigan or Univ of CA in San Francisco. Shiley, Wilmer, Emory, etc, usually a big university, I would go there. I had radiation done at Emory in Atlanta, rest at Kellogg. This disease is hard for an adult, I cannot imagine how difficult it is for a child. It took a lot of research to decide where to seek treatment but despite the severity of my TED, my rehabilitation is complete and I am left with minimal effects, so things certainly can get a lot better. Best of luck.
in reply to: New dx of graves at 28yrs old. Need advice! #1185185If he has any eye symptoms, surgery would be beneficial as it tends to shorten the course of the eye disease. Men seem to get more severe eye disease. I had a total thyroidectomy after 6 months on methimazole and in my case, it was absolutely the right decision. There is no advantage to long trials of medical treatment, so it is reasonable to opt for definitive treatment early on. Work with your docs to choose the best option.
Here is just one study supporting early TT. https://www.ncbi.nlm.nih.gov/pubmed/28681142
in reply to: Lid Retraction Surgery #1185176I have had one lid done twice and the other three times. Lids are extremely delicate and the muscles are thin. Both my lids were retracted and I had prior orbital decompressions through the lid and strabismus surgery, so my surgeries were more complicated. My oculoplastic surgeon commented that lids are much harder than removing bone from the orbits, so the important thing is to choose an oculoplastic surgeon experienced with Graves patients. I had one of the best surgeons in the country, an expert in Graves, and still had some complications as well as reactivation of the burned out eye disease itself. That being said, the relief from the dry eye caused by the retraction is tremendous and the return to normal appearance is also huge. One lid is slightly lower than the other but they are in normal position and the puffy lid thing is gone. The last surgery was done under local, no sedation, in the office. The others were local with IV sedation in OR. The surgery leaves a lot of bruising for a few weeks, but is not painful. I took the supplement arnica montana per docs suggestion before and after last surgery and it helped with bruising.
So consider it carefully if you are not troubled by dry eye or if friends tell you they dont really notice it. A millimeter difference in lid height is considered normal, which is where I am. I do not at all regret doing it, but it is not exactly the simple procedure it may seem to be. Most important is choosing a surgeon with Graves eye experience, even if you have to travel. You cannot go into lids too many times so be absolutely sure the eye disease itself is burned out and not changing in any way. Hope this helps.
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