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Actually if you have a total thyroidectomy you make no hormone at all and as soon as what you have in your system is gone you are hypo. This is not the case with a partial where some is left and you are then correct. Hypo may or may not happen. Depends on how much is left and how well it works.
But a total removal will make you hypo very fast. There is no hormone being released at all. So hypo is fairly rapid.
If I remember right one or more of our bulletins address the need to have blood work shortly after TT so the patient does not go really hypo.
1. TT really is the “fastest way” to move forward with a plan to conceive. It is most likely a mistake for Jake to say that you’d be hypo a week after the surgery, so I disagree with that,and a good surgeon or endocrinologist can give you some statistics on that.
This is actually a fairly common question back in the day when we started this board.
Some doctors want to do RAI or surgery right away and not give antithyroid drugs a chance to work.
With you trying to get pregnant it is hard when levels are out of whack or changing. At your age they may have recommended the surgery to give you the best chance to conceive once on replacement hormone (about six months post surgery).
The other thing to consider with a confirmed diagnosis of Graves’ disease is the thyroid is not healthy. It will not get better with time. It can stay the same or get worse, it will not get better.
There was a BIG argument and probably still is about RAI or thyroidectomy to treat Graves’. Many sites would harass you saying you were removing a working thyroid and caused many a great deal of stress.
Truth is, your thyroid is not healthy. It can stay the same or get worse. If it stays the same you can try medication to slow it down or speed it up to a normal thyroid level and make pregnancy more likely.
If you wait, you may get pregnant but it may be harder with fluctuation levels.
If you have surgery to remove the thyroid you do hypothyroid in less then a week. You go on replacement hormone to get your levels normal. That is where the six months comes in I was talking about. Any change to thyroid levels takes 21 days to get into the blood stream and read as new true thyroid levels.
It is a lot to think on. But, we are here for you. Hope to hear you are looking for a new bundle of joy soon. But in long term, think about a treatment option.
in reply to: Thyrotoxic Myopathy #1181512Nancy asked me to pop in and give a reply.
I had a real problem with this when hyper and after treatment. I think she asked me to stop in because I had three cases transient paralyses due to my levels being off and a lot of STRESS. I had muscle wasting and kept pushing myself and just plain wore myself down to the point that my muscles just shut down for a brief period. One case I happened to be on the highway crossing a bridge at 55 miles an hour.
Listen to your body. If you need rest take it. if you think you are too tired get back to the doctor. In my case I was in the low normal range and needed more synthroid. It just wore me out. Once my levels went up my muscle mass came back and I had no issues.
I too took almost three years to get back to normal after RAI. It may scare you to know it can take some time but know that we did not get sick overnight. We do not get better overnight.
But over 20 years later, my hyper and hypo hell is a distant memory. I have been well for over 16 years. I just retired and now have time to write more and do things I want to do. I have Graves’ and life is good, no life is fantastic. When I was first diagnosed I never thought I would be where I am today and how good I feel.
Give it time, rest when you need to and made sure your doctor listens to how you FEEL not just your labs. As always we are only a click away.
Jake George
Co-Author, Graves’ Disease In Our Own Words.in reply to: Urge to tear my muscles out. Help. #1181462Nancy asked me to stop by and see if I could be of help. I found different muscle groups spasmed when I was at different levels. Biceps, thigh and buttocks. As I moved from hyper to hypo, I found different groups reacted to different levels.
Try aspercream. It worked wonders for me to calm the jumpy muscles. Also a hot bath helped.
I have not been by in ages. Retired a few months ago and life has been great. It did not happen over night. Just try to remember we did not get sick in a week or month. So recovery takes a long time too.
in reply to: EYELID SURGERY, ANYONE???? #1063202Sorry I did not get a chance to answer this earlier.
I have had the hard pallet graft that you are asking about. It is done with a twilight drug. You need to be awake enough to be able to move your eyes, blink, etc. You will also need to be awake enough to use your tongue to put pressure on the dressing they will put on the roof of your mouth to stop bleeding.
Ask your doctor to make an appointment with a dentist to have a stint put in. The stint is like a partial plate that will protect the graft site and give you a ton of relief. I did not ask for the stint and in hindsight it was one of the greatest errors I have ever made.
The graft site will be VERY tender for months. I could not eat any food that was hotter than room temp for almost 4 months. It was almost a year before I could eat spicy. Without a stint you will not be able to use a straw, due to the sucking pulling on the graft location, for months.
With a stint you do not have the hot food, spicy food or straw problem. Well worth asking for the stint. Did I say the stint was the way to go? Just do it.
As for the recovery time for the eyes? It was quick and the results were amazing. I would do it all over again. With a stint this time… Gee I mentioned a stint again.
Also another side thing that the doc did not tell me until later. The graft will produce plaque. I will appear as pink and fuzzy when you pull your lower lid down to look at it. Plaque is good because it shows the graft is healthy. Every few months the plaque will sough off and it feels like I have something in my eye for a day or two. But it is a good thing because the graft is healthy. Feel free to drop me a message here and I will answer any other questions. By the way. Ask for the stint.in reply to: Driving and Ted …Conflicting Advice..cont… #1062673I believe they were referring to me. I have had the orbital decompressions. I needed three follow on strabismus surgeries to clear out the double vision as much as possible. I do have permanent double vision but ground in prisms have that covered.
I did not drive with double vision without an eye patch. Using one eye fixed the double vision issue and took due responsibility on my part to look closer when I drove.
Yes I did eye muscle exercises with great success and I learned a new hobby at the same time. My eye doctor started having me do yarn and plastic canvas stitching to help my eyes focus. I started with 7 holes per inch, went to 14 holes per inch and then went on to counted cross stitch on 24 count French linen.
Now I do Native Bead work and porcupine quill work and my eyes are fine for it.
It all takes time. I know we type A’s hate to hear that but patience is a virtue.
I do not check in as often as I used to when I started this bulletin board almost 12 years ago… But I can truly say I have Graves’ and life is good.
Since I have joined Toastmasters I have won the Humor speaking contest two years running for my club and have presented at district level. This year’s presentation was "Better Living Through Pharmacuticles, Farmacuticles, pharmecu… Drugs.
I would love to speak to the group and tell them there is life after Graves. Published author, partner in a publishing house, Pow Wow dancer, flute player and maker. And still working as a Civil Service Logistics Test Engineer.
I have Graves’ and life is good.
in reply to: Has anyone else developed a shellfish allergy? #1063848ME!
I became allergic after many years with Graves’ disease. I cannot say it is due to Graves’ but the thing that most are allergic to is shellfish is the iodine. After so many scans and iodine Cat Scans, I suspect that had an impact.
So now I eat fish while everyone else is eating lobster. But I am still vertical and sucking air. I have Graves’ and life is good.
in reply to: NEED TO HEAR FROM OTHERS RE THEIR EYE SURGERY #1063910I had a number of strabismus surgeries. The discomfort only lasted a few days. You are over the worst part, or at least should be. If you are still having the dirt in the eye feeling tomorrow call your eye doctor.
Also are you using an antibiotic eye lubrication? That will help a great deal too. Also try frozen baby peas wrapped in a thin towel or a few layers of paper towels.
I remember those days well and am glad I had them done to get an upperhand on the double vision. Let us know how you are doing in the next day or so. The red eye will last well over a week. It will go away in time. It is just blood trapped in the outer layer of your tears and lubricant.
in reply to: Recommended Reading #1065772Dr. Nancy Patterson and I wrote "Graves’ Disease In Our Own Words" a number of years ago. We realized that with people asking the same questions over and over again that the medical community was not addressing our needs. We wrote the book to answer those questions.
It is well worth the price and is available from Amazon and Barnes and Noble on line.
in reply to: Can surgery trigger TED? #1065830In a word, no. TED occurs in about 15 to 20% of people with Graves’ disease. Higher TED antibody levels can be brought on by stress or your thyroid levels being high.
With the thyroidectomy, your thyroid levels should not be high unless you are taking too much replacement. The antibody levels should be low or nil since your thyroid is no longer there. Higher antibody levels can raise the TED antibody levels.
So bottom line, no thyroid, no increase in chances of TED. You run the same as anyone else with Graves to be in the above percentages.
in reply to: About to go off meds #1066040Let’s hope for the best and that remission is in your future. I do however, understand your concern. Give your body time to adjust and pamper yourself for a bit. You know what to look for in symptoms, but don’t freak out. Relax, take a bubble bath, get a pedicure and chill.
Even if it does come back, life is still good and worth living even with Graves’ disease.
in reply to: Husband died of Graves #1066350On an episode of "Dr. G Medical Examiner,” two months ago had a florist in Orlando that died unexpectedly. As the show talked about what was happening before the woman died of congestive lung failure, I sat there and told Jan, “That woman was hyper thyroid for a long time.” When you go down the list of symptoms on our home page, she had all but two.
Sure enough when the labs came back she was extremely Hyper Thyroid. Cause of death was undiagnosed Graves’ disease. That is why we spend so much time on education here and support. Doing nothing is not an option.
And yes, Bobbi is right after my cousin Tiger died at age 23 I felt I had to do something. Losing one person who could have been saved is too many.Sorry to hear of your husband’s crossing. But know that you will be together again…
in reply to: strabismus surgery #1066407Kim,
Prior to my decompressions, I worked a haunted house and I worked an eye machine that had like ten eyes that followed the people as they walked through.
During a break one of the other workers asked how I was able to get my eyes to bug out of my head. I opened my eye lids as far as they would go, which was pretty far, and said," Whats wrong with my eyes?" I acted like it just happened. The poor guy freaked until I started to laugh and explained Thyroid Eye Disease to him. The next night I played the part of Hell Raiser with the coolest horns that weighed about 30 pounds and wicked looking eyes…
in reply to: Retracted eye lid #1066205The nerves that serve the eye lid, ear and jaw are all effected by an irritated or dry eye. When I get an unexpected ear ache I think "Have I been using my eye drops enough or do I need to use them?"
It is usually dry eye in my case that mimics an ear ache. Talk to your eye doctor about what eye drops would be best to use. See if using eye drops helps the pain in the ear and jaw.
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