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in reply to: Newly Diagnosed #1072357
Hi Christy,
It’s really normal to go through emotional stages when first learning we have a disease that will be with us (in one form or another, if nothing more than the need for a yearly blood test) the rest of our lives. It will take time to process those emotions, which will follow the same path as in the grieving process when we lose a loved one or a relationship. Why? Because we’ve lost something important: the perfect health of those affected parts of our body.
For anyone who isn’t familiar with the stages of grief,
The stages are:
1. Denial:
* Example – "I feel fine."; "This can’t be happening, not to me!,"
2. Anger:
* Example – "Why me? It’s not fair!"; "How can this happen to me!"; "Who is to blame?"
3. Bargaining:
* Example – "Just let me live to see my children graduate."; "I’ll do anything for a few more years."; "I will give my life savings if…"
4. Depression:
* Example – "I’m so sad, why bother with anything?"; "I’m going to die . . . What’s the point?"; "I miss my loved one, why go on?"
5. Acceptance:
* Example – "It’s going to be okay."; "I can handle it with change"; "I can’t fight it, I may as well prepare for it."My suggestion is that you let yourself work through this process in the way that makes sense to you. As long as you don’t get stuck too long in any phase of the process, it’s all very healthy. It’s even normal to move back and forth between some of the stages for a period of time. The only thing that might be bad is if you should find yourself feeling angry or depressed, unable to move on to acceptance. In that case, counseling would be in order. I’m sure you’ll do just fine though.
For most of us, finding support on this board is a helpful way to help process some of the emotions. For me it was a lifesaver when I was diagnosed 13 years ago. I’m feeling well thyroid-wise, still dealing with eye issues, but very much in to the acceptance stage of the emotional adjustment. I was angry for a long time in the beginning, though.
Hang around here and keep us updated on how you’re doing. You’ll get lots of support and help understanding what’s going on.
Best wishes and big hugs,
Dianne W
in reply to: Orbital Decompression Surgery #1074437Beena,
Most doctors recommend six months to a year. Talk to your doctor and see what he thinks. My eyes were showing good improvement in six months, but even more in a year.
If the drops are causing the lining of your eye to be more swollen then you might be having an allergic reaction to something in that med. I’ve had that problem with two different ones (where the prescription eye drops actually caused me chemosis: an inflammation of the lining of the eye). Talk to your doctor about that; perhaps he can change you to something else. That’s what my doctor did.
I suppose you’ve already seen the doctor by now and perhaps he’s done something to help you. I didn’t read your post until today, unfortunately. I’ve had things going on and haven’t been on the board much recently. Let us know how you’re doing.
Patty and Judy–glad to hear you’re both doing so well. Yes, those frozen peas are the greatest! I’ve had 9 surgeries with another one coming up later this month (to reconstruct a lower eyelid I lost to a complication 2 years ago) and I’ve used them every time, thanks to that suggestion from someone here on the board (probably Jake or his wife Jan). The numbness? Mine took around 9 months to clear up.
Please stick around and share your positive attitudes and support with the others who are following in our footsteps with this.
HUGS,
Dianne
in reply to: Endo asked about Charlie Horses?? #1072305I had muscle cramps (charlie horses) both hyper and hypo, and have them now all the time with normal thyroid levels but caused by autoimmune neuropathy, a nasty condition. So anyone who has these continue when thyroid levels are normalized should be sure to have their cause investigated further.
What wonderful, wonderful answers so far! Posts like this are great support for newly diagnosed people who must be feeling scared and angry (at least, that’s how I felt in the beginning). Please everyone, keep thinking on this topic and add your own thoughts.
I’ll add mine later when everyone else has had a chance. I have a VERY LONG LIST!
HUGS for all,
Dianne
Hi Cathy,
I have never seen anything in the literature about a link between Graves’ Disease and migraines, but I do know that I didn’t ever have migraines at any time in my life until after I had Graves’ Disease.
Are you coming to the GDF Conference in Charlotte this year? If so, let’s be sure to ask this question to the experts there this year. This isn’t the first time someone has wondered about the relationship on this Bulletin Board, so I wouldn’t be surprised if most doctors have been asked this question before.
in reply to: phew…thought the website had been shut down! #1072415It is strange when unable to connect, because one never knows if everyone else can get on and it’s only oneself that can’t! I had to email Ski and Peter to see why I couldn’t get connected. i felt so much better to discover there was a real reason.
Hyperm, I’m so glad to hear you’re heading the right direction and that perhaps soon you’ll have this behind you permanently. Some people seem to get more than their fair share, and you’re one of them. I’m so glad you can keep a sense of humor about it all. That’s probably what’s getting you through this.
Best wishes,
in reply to: GD & Joint pain / loose joints..any link #1072426Catsmum,
When I was hyper I thought I had arthritis. All my joints were sore, and one reason I delayed seeing the doctor is that I just assumed I was aging and getting arthritis, which ran in my family. (I was just over 40 at the time.) Your daughter may find that these joint problems improve when her thyroid levels are normal. If not, she can be tested for associated autoimmune conditions. Her doctor may want to test her for those anyway. Be sure he knows about the joint problems.
Her eye grittiness isn’t uncommon for people with Graves’ Disease. A high percentage will have at least this much eye involvement. This doesn’t mean she will have a serious case of TED. She should use lubricating eye drops frequently and she’ll be much more comfortable. It would be a good idea also for her to see an ophthalmologist who is familiar with Graves’ Disease patients, who can do a baseline evaluation on her eyes. He can monitor whether she is experiencing any changes over time. It can be difficult for the patient herself (or even family members sometimes, who see the patient on a daily basis) to tell just how much the eyes are changing. The doctor can measure the changes from one visit to another.
The odds are good that your daughter will never have a serious case of eye disease. 80% of those who are going to get it already have it when they are diagnosed with the thyroid imbalance.
Best wishes to you both,
in reply to: Could this be EYE DISEASE????? #1072437Lin,
If the lining of the whites of your eyes become filled with fluid and sag into the outer part of your eye, that is known as "chemosis", and is a sign of active TED. Grittiness can also be. You might be better off seeing an ophthalmologist who sees Graves’ patients regularly.
If you’re having some TED 7 years after treatment then it’s a good idea to meet with your endocrinologist and make certain that your thyroid levels really are where they should be. If you’re a little hypo or a little hyper, either way, it could contribute to the problem. Hypo would be more likely to be the culprit.
YOu say using lubricating eye drops haven’t helped the grittiness. You may not be using them often enough or long enough. Try being more persistent and see if that helps. If you wait until you’re feeling the grittiness to start using the drops, it will take several days of consistent use to get rid of that feeling. Dry corneas will feel gritty whenever the eyelids pass over them, which means whenever you blink or turn your eyes. Once you get the corneas healed with lubricating drops, keep using the drops so they don’t dry out again.
Hope that helps.
in reply to: Prednisone: Eye De-Puff Success!!!! #1072443I understand how difficult the sinus issues are. I went through 4 years of complete misery with sinus problems and had two sinus surgeries during that time. My double vision has fluctuated with the severity of my sinus problems. Experts have not been of any help, nor have they taken seriously the relation of the sinuses to the double vision. Fortunately, the pain has eventually settled down over time, and along with it the fluctuations in double vision.
Prednisone did seem to help settle down my sinus issues for a time, so I hope this will also be true with you.
You may get by without any serious Prednisone side effects on the dose you’re taking. I hope so.
Best wishes,
in reply to: Prednisone: Eye De-Puff Success!!!! #1072441Hi Melissa,
I’m glad it’s helping. You probably won’t have the nasty symptoms unless you’re on the Prednisone for a really long time. I’ve been on a high dose (tapering down) for six weeks with no problems at all. But everyone’s different. How long are you on it for? What dose?
The sad part is that when you taper off, the problems will more than likely return to one degree or another, and you can’t be on it forever. It definitely is nice while it lasts, though. Are you having trouble sleeping?
in reply to: Graves disease in Males #1073313Aravindh,
Is your doctor now recommending RAI without giving you a chance to have a remission on methimazole? If so, I just want you to know that you don’t have to follow that recommendation. The choice is yours.
in reply to: Graves disease in Males #1073312Just to clarify issues with radioactive exposure to both sperm and eggs following RAI:
The ova that are closest to maturity are most susceptible to radiation damage, but ALL ova do receive a very tiny amount of change to DNA from RAI just as they do from ANY radiation source. The same applies to the sperm. So the question is not whether the DNA of the ova and sperm receive damage from RAI, but how much, and what it means; and this is what we have to keep in perspective.
All of us receive radiation every day from many sources, and medical sources are an extra source that we try to keep to a minimum and use only when the benefits clearly outweigh the risks, since usually medical radiation adds to the cumulative exposure very quickly at high rates. Comparing the amount of radiation in RAI that goes to the ova and sperm to that of other medical technologies, you’d find it’s higher than most. A 5 milicurie dose of RAI is approximately equal to a couple of barium enemas in that regard. However, the theoretical risk of birth defects is extremely low, and in practice, no increased birth defects have been seen.
One of the reasons birth defects haven’t been seen in babies born to parents who had RAI is that most mutations in DNA are recessive, so it would take a defective gene from each parent on the same gene to cause a birth defect. The odds of this occurring are extremely low. If RAI patients began to marry only each other and their children mixed only in this same gene pool, birth defects might show up more often, as they do in birds living in the area damaged by the Chernobyl nuclear accident.
The bottom line is that every patient who has RAI and then has children is probably introducing some tiny extra DNA changes into the gene pool, above and beyond those that would occur in the normal course of living, and theoretically it’s even possible for a birth defect to be caused by RAI, but it would be statistically impossible to know that was the cause, since the chances are so small. But this is a case where each patient must decide whether the therapeutic benefits of RAI are worth risks that are mostly theoretical.
Until recent years RAI wasn’t given to patients who still wanted children because doctors know all radiation causes changes to DNA, but now that many years of treatments of patients of childbearing age have shown no increased birth defects, many doctors will recommend it. Others still don’t. I think it should be the patient’s choice, but I think each patient has the right to know exactly what the facts are.
in reply to: Synthroid -questions…. #1072449Mickey,
Another opinion: You’re wise to stick with a T4 pill at the beginning and see if you can feel well on that. ONLY if that doesn’t work for you should you consider Armour or any other product containing T3, because to do well on those they need to be spilt into at least 3 daily doses to remain stable in your system.
This is what I did. I didn’t feel well on Synthroid or Levothyroid, and my Free T3 was tested and found not to be in the normal range even with my Free T4 at above normal, and a TSH at the low end of normal. Switching to Armour allowed my Free T4 to go back into the normal range and brought my Free T3 into the normal range as well, while allowing my TSH to come up a little higher. I felt TONS better. But the trade-off is taking a thyroid pill every 8 hours without fail. Not many people want to do this. It requires managing meals so that all three pills are on an empty stomach.
All the studies that have been done so far on the advantages of T4 meds vs. combination T4/T3 meds so far have been done taking the T3 portion of the drug only once per day, which will make the patient hyperthyroid part of the day and hypothyroid the rest of the day. I’m not surprised that the studies found there was no advantage in the combination therapy. But still, most people will have trouble taking a thyroid pill faithfully more than once per day, and most people don’t need to. Recent studies show that most people have normal T3 levels when they take a T4 pill. Give that a chance. It’s much simpler and safer for most people.
You don’t have to take Synthroid, but you should stick to whatever you ARE taking, and generics should be avoided since you can’t be assured that the manufacturer wouldn’t be changed without your knowledge. (That’s the problem with generics in thyroid meds. It wouldn’t be a problem if you could be assured of the same brand every time.)
I personally have no knowledge of buying from Canadian pharmacies or what the legalities are, or what their standards are for drug quality. Perhaps some of the Canadians on this board could help with this one. Elf? James?
in reply to: Eye surgery #1072607When I had young kids I was just the way you are. I had unreasonable fears about anything that might take me away from them. I couldn’t take even short trips without suffering horribly from that fear. Fortunately, my surgeries were after they were old enough that I knew they would be okay if I died. I’m like you—would have had a zillion kids if circumstances had permitted it.
Just keep in mind that the anesthesiologist is there specifically to watch over your vital functions and to make sure you remain alive. Everything else that happens during the surgery takes a back seat to that, because if for no other reason your anesthesiologist is not about to have a death on his/her record. You WILL be taken care of. He or she is a fully qualified doctor, and is the one to talk to about any of your concerns of this nature before you go under. Be sure to have an honest discussion about your feelings and the reasons for them, and if for any reason you don’t feel good about the person in whose hands you are trusting your life, don’t hesitate to ask for someone else (someone more empathetic).
I almost always have had a phone call from the anesthesiologist the day before surgery, so be ready to discuss any concerns then, in case you do too.
Perhaps it would help ease some of your fears to make sure that you have all loose ends tied up just in case you didn’t make it through the surgery. After all, no one has any guarantee of making it though another day anyway, so when one has children it’s not a bad idea anyway to have arrangements made in case something should happen to oneself. That is, make certain that they would be raised by the person/s you would want to have raising them and that your will was in order. Perhaps that would help you feel more secure? We can’t control everything, but in this case you would be making every choice that’s in your power to make under the circumstances. Also, you can sign a power of attorney for health care to someone you trust and discuss in detail what you’d want done if you aren’t in the condition to make your own decisions.
When I fly on airplanes now I simply don’t allow myself to think of what might happen. I have some good techniques for doing this. If I allow my mind to start in on all the airplane noises, I can create a disaster movie of gigantic proportions. It’s much better not to let those thoughts get started.
I hope you get a little help from what has helped me, but I realize we’re all different and you may have to find your own methods. Best wishes to you.
in reply to: Desperately need advice #1072700I’m sure that some doctors would "operate" that way (pun intended).
As much as I refuse to bow to the notion of doctor as god, I still hope to believe that a good share of them are there with good motivations, wanting to help their patients, and making recommendations that they believe are best for their patients. This will probably be as with anything else in life: you can find all kinds. But at the end of the day, they all have to look at themselves in the mirror.
At least, I hope that there are more good doctors than bad ones.
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