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in reply to: 1st Appt – What should I expect #1067443
Hi,
I would also recommend you start getting copies of all your lab results and start keeping a record of how you feel at various levels (specific symptoms, how often etc.) as you go through your treatment. Also, get a copy of any labs your GP ran to help diagnose you. It is at least something to do while you wait. It really helped me to have a notebook/small binder in my hand to write down questions and answers at my appointments and to track my labwork in.
Laurel
in reply to: Hyperthyroid again #1067450I once had a pharmacy try to give me a prescription for somebody else (same last name). I always double check now to see that I have been given what I was expecting before I leave the counter. Mistakes happen.
in reply to: Not genetic #1067688Hi Lucy,
They have identified the gene that ALL people with an autoimmune disease have (not just Graves patients). Only people with this gene are predisposed to an autoimmue disease. Having the gene does NOT necessarily mean that you will ever get an autoimmune disease. Many people who have the gene will never get an autoimmune disease. To actually go on to develop a disease, something else needs to trigger it. They are still trying to determine what these triggers may be an how it actually sets off disease. So far the theories include stress, homone fluctuations such as puberty, pregnancy/post-pregnancy, menopause, viruses, etc.
Even if there is not autoimmune thyroid disease in your family, you may find someone with allergies, MS, psorisis, etc.
I hope that helps.
Laurel
in reply to: no shining lights, only sharp pains #1067749Please consider NOT doing anymore exercise until you have been checked out by your DR. You could be doing your heart irreperable damage. Many of us are put on heart medication (beta blockers) in the early course of treatment to protect our hearts from working too hard.
Laurel
in reply to: Recently Diagnosed with Graves #1067777Hi,
I was 8 months postpartum when I was diagnosed and started methimazole. I was on it for about a year until I became pregnant with our 2nd (a bit ahead of our schedule) and was switched to PTU which I was on for about a month and was able to discontinue entirely. I have stayed in remission ever since. Our ‘baby’ is now a happy and healthy 3 year old. It is possible to have a healthy pregnancy on an ATD but I wouldn’t recommend it. It was very worrisome. Both methimazole and PTU are catagory D for pregnancy due to an elevated risk of birth defects. Pregnancy is hard enough without the added stress of concern that medication that you MUST have could harm your baby.Another issue to consider is breastfeeding your baby. Both of these drugs will also pass through the breast milk. I was able to continue nursing our first but had to have her thyroid levels monitored via regular blood tests to ensure that she remained in normal levels. All the doctors (my endo, my PCP, my baby’s Dr), did agree that continued nursing was likely a very small risk and the benefits far outweighed the risks but still, another worry. The recommendation on breastfeeding may vary depend on the ATD dose and the age/weight of your baby.
While I luckily have remained in remission, the first year postpartum I was followed fairly closely as this is a common time for Graves to flare up due to the ramp up of the immune system postpartum.
The right level of thyroid hormone is critical to the development of babies. It is much easier to regulate replacement hormone than to trying to control excess thyroid during pregnancy.
I have a good friend who had thyroid cancer. She had surgical removal of her thyroid and a much higher dose of RAI than Graves patients receive. She is going to deliver a very healthy baby in a couple of weeks.
The ATDs worked well for me and I am glad that I went that route as I still have a functioning thyroid gland. They gave me time to learn about my options without making a permanent decision. At this time in my life , I would still consider all of the threatment options if I were to come out of remission. Right now I would likely try ATDs again. If that didn’t work, I might lean towards surgery as I have small children and might balk and the restrictions with it. If my kids were older, I’d be more OK with RAI. I think you really need to consider where you are in your life and pick your treatment based on what feels right to you.
Regardless of which treatment you ultimatley choose, be sure to tell your OB & your new baby’s doctor of your Graves history. Even if you have had RAI or surgical removal of tyour thyroid, there is a teesny weensy teeny tiny itty bitty risk of the auto-antibodies in your blood crossing the placenta and causing a temporary condition called neo-natal graves. It is just something they will want to know so thay cankeep a closer eye on the baby. This is a very very very rare occurence.
I would be happy to answer any questions you may have about my experience. I promise that whatever treatment your do choose, your sill start to feel better.
Laurel
in reply to: Still experiencing symptoms…but labs are normal? #1067789Hi,
Other things to consider:
1) You may be in the normal range but it is not YOUR normal.
2) Maybe your thyroid has occasional days that it works overtime but they are not frequent enough to substantially change your overall numbers.
3) Just fluxuating IN the normal range can produce symptoms.
Just some other ideas.
Laurel
in reply to: Is Doing nothing an option? #1068150Hi Hockey,
Yeah. Graves sucks. None of the treatment options are risk free. I understand the small children issue as I have a 2 & 4 year old. For me, the possibilities of untreated GD (permanent heart damage, crumbling bones, even death) were much scarier than the much much statistically smaller possible risks of any of the treatments.
You mention that you had issues with PTU. Have you tried the other ATD Methimazole? Sometimes people tolerate one of the ATDs better than the other. Also, the symptoms you describe could have been based on the size of your dose. Did they try reducing your dose to see if the side effects could be reduced and still maintain an acceptable thyroid level? It is common to be started on a fairly high dose and then to be able to taper down in a couple of months to a much smaller maintenence dose.
A possibilty of remission also exists with the ATDs. Remission usually takes 1-2 years to acheive – and may not last. There are many many people who opt to use a low dose of ATD to long term control (years and years) and it is working very well for them.Sugery is another valid choice. Usually people are out of the hospital in only one to two days and your children can come visit. This was probably my 2nd choice option.
I had a friend who had thyroid cancer and got to experience both a surgical thyroidectomy and a very high dose of RAI. Based on discussions with her on her experiences I was less anxious about both of those a possibilities. As my children get older, I seem more willing to consider this option.
What your children need most is to have a healthy mother around for a long long time. Please don’t let fear (and Graves makes us extra anxious over stuff), rob you and them of that.
Laurel
in reply to: New to Grave’s Disease #1067969On a practical note, I had to get a pill organizer to remember if I had taken my meds. My short term memory was shot. It has since recovered. Let your Dr know about the heart palpitations. It is OK to get a second opinion too if you are not comfortable about your treatment.
in reply to: Is it ok to be fearful of having RAI? #1068013Hi,
Don’t forget that Graves Disease is heightening all your anxious feelings. It was when I started crying and couldn’t stop myself that I figured out something was wrong and went to the Dr. It is really hard but try to remember that this disease robs us of our normal thinking patterns. After you have been treated, you will get back (in time) to feeling healthy and strong. You ARE a resiliant person.
Consider letting more of your family in on what you are going through. You have Graves. You could use a little extra support right now. It is OK to ask for it. Would you want a family member to not tell you if it was happening to them and there was something you could do to help? They also need to know for their medical histories since there is a genetic componant for people with auto-immune diseases. The next time your kids have their physicals, be sure it is added to their records as well.
These icky feelings will go away. Really.
Laurel
in reply to: New to Grave’s Disease #1067967Hi,
Treatment for Graves is often frustrating when trying to normalize your levels. With Anti-thyroid meds (methimazol & PTU) it can be a bit like the pedulum in a clock. You start hyper on one side and are started on a dose of ATDs then swing over to the hypo range. The Dr then decreases your dosage and you just have to wait about 6 weeks to see how high the pedulum will swing back again the other way. With some luck, it will only take a very few dosage changes to get that pendulum (your thyroid levels) to stop swinging and come to rest at your normal level. I went pretty hypo too after about 8 weeks on ATDs and my dosage was reduced. I think we tweaked my dosage about 3-4 times before I was consistant. It felt like it took forever at the time but in hindsight (and my normally patient nature returned), it wasn’t that long.
I was told that remission usually takes 1-2 years on ATDs to achieve if it is going to happen (it did for me).
Ignoring Graves can have serious permanent long term affects including but not limited to heart damage and osteoperosis. Please don’t ignore this. It will take some time, but with treatment, it will get better.
in reply to: New here…TSH low & waiting on endo appt. #1067978There are a small number of other things that could cause hyperthyoidism but Graves is the usual suspect. Your endo will likely do some further testing which could be an uptake scan or auto-antibodies in more bloodwork to get a definitive diagnosis but all you symptoms sure do sound like most of us. The good news is of course that if it is, you should have a choice in treatment and with treatment you will get better (in time).
Keep us posted.
in reply to: Any suggestions- Graves’ child behavior #1068038It is hard for adults to deal with GD. I can’t imagine the difficulty a child would have in processing what has/is happening to them. I think it could be immensly helpful to have a third party (not a parent) to talk to. A psychologist/psychiatrist would have specialized knowledge & resources to draw from that could assist is this rocky time to give your daughter a safe place and tools to deal with her questions and frustrations. At 8 she will just not have any life experience to fall back on to allow her to frame this current difficulty.
I also agree with suggestion in other posts that the entire family consider counseling (siblings too if any – it can be easy to overlook the impact of a sibling’s illness when parents are in crisis mode). Everyone is affected.
Finding the right individual may take some trial and error. Just like any other medical specialist, we just click better with some than others.
Sometimes as parents we have to make decisions that are not popular with our children but for me, health and wellness (including mental health) are non-negotiable. How you present it of course can greatly impact her receptiveness. You may want to go alone first before she is seen so that you can get some coaching and support.
You as her parent will know your child best. Go with what your gut tells you you need to do.
Hi,
I was well controlled on ATDs for a little over a year and heading toward remission. I then became pregnant with out 2nd which likely cinched the deal and was off ATDs within a month of becoming pregnant. I have been in remission ever since and our ‘baby’ is now nearly 3 yrs old. The only issue that I may have had was that I developed hives right when I became pregnant. Was it the methimazole or the pregnancy? My gut feeling is that it was the pregnancy because of the timing, but we’ll never know. I was switched to PTU for that last month and had no problem with it.
I was happy with the ATDs and would consider it again should the need arrise. They worked well for me. They gave me time to learn about GD and my treatment options and I am now comfortable with considering all of the treatment options should I come out of remission. My decision would just be based on my circmstances at that point.
I know that I have seen posting from others who opted for long term use of ATDs (usually at a low maitenence dose) who have done very well with that route too. You may want to look for older threads on long term use.
Hope that helps some.
Laurel
Hi,
I so sorry to read your news. One of my very best friends had thyroid cancer in her mid-twenties. We are both now approching 40. For her, they knew they were treating cancer from the start. She did not have any other thyroid issues. She had a complete thyroidectomy and a bit stronger dose of RAI than Grave’s patients typically receive. She also had follow-up testing for 5 years to ensure that there were no traces of thyroid tissue left anywhere in her body. I know that there is a thyroid cancer organization web site
http://www.thyca.org/
that you may find useful. She also became involved in Gilda’s Club and benefited from a lot of support from there.She is really doing very well today and you would never guess that she had ever had cancer. I remember her saying that her doctor told her that if you had to have a cancer, this was the one to get because they are so successful with its treatment.
I am wishing all the best for you.
Laurel
in reply to: Need Help!! #1068503Michael,
As Lyn said, make sure your little one is safe. This may mean that your wife should not be left alone with her. I understand that this may be difficult to do but it may be necessary.
If you cannot get your wife into her regular Dr you can also take her to an emergency room. She needs mental health help as fast as possible. It sounds like her mental heath is as seriously compromised as her physical health and both NEED to be treates as soon as possible.
I am so sorry that you have to go through this. I cannot imagine the stress you must be under.
I’m praying for your family.
Laurel
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