[MaryI]

#1018032

Thank you for this forum!
I have been reading the forum now for a few weeks and am curious about how you each know which direction to take. My endo said that usually patients change their minds about how to treat the Graves, and that it is too soon for me to make a decision on a definitive treatment. I am almost 10 months using the ADT(meth) and still feel anxiety, heart stuff, sweating, fatigue. Someone said they could see my heat beat thru my blouse the other day. Does this go away if you do the RAI or remove the thyroid. Or do other uncomfortable symptoms take their place.
Of course I feel way better than before, but am wondering if this is as good as it gets.
Another question- do most also see their family doctor on a regular basis – I haven`t been for about 7 months. The range of symptoms that come with this illness makes me feel like a hypochondriac and I think I am too embarrassed to go. I live in a small town and don`t want everyone to know that I am sick, as I have a business and employees.
Thanks ,if anyone can give me some advice!

[Bobbi]

#1062317

The point of taking the ATD is for it to make you well again, not just slightly less sick. So, after 10 months on the meds, and still feeling symptoms, I would be seriously questioning the doctor who is monitoring your treatment.

For instance: When you are taking an ATD, you have to be on just the right dose, and fluctuations in antibody levels can alter how much you need from time to time. So if you are not feeling well, you might need to change the dose of the medication.

Or (and this is what happened to me), the medication itself might be presenting complications which make you feel poorly. There is another ATD (I don’t remember if you said which one you are on, but there are two), which might work better. And there is definitely removal of the thyroid as an option. The replacement hormone IS thyroid hormone, and side effect issues are limited to whether or not we are taking the correct dose, they don’t arise from the body’s inability to process the chemical efficiently.

If the GP is the doctor who is monitoring your thyroid medication, you have to put away your concerns about people knowing you are ill and go back. You ARE ill, but we do get well again with this disease. That is what you should expect from any of your treatment options, including the drugs. Don’t be fooled by the sound of online forums like this one. The people who post on these forums are the newly diagnosed (like you), or the relatively few people who have lingering complications. But they are NOT representative of the entire Graves community. People who get well again, go back to their lives and they stop posting on boards like ours. NGDF has people who have gotten well again act as moderators here to provide some perspective. Kimberly (on meds), Ski and I (RAI) have monitored this board for years. And I can tell you that if you go back into the archives, you will see the same stories over and over again — the names change, however. Because once the effective treatment is found, people no longer need our support.

So expect to feel well. And if you are not, go back to your doctor to find out why not.

[Irishgal]

#1062318

Hi there –

When I read your post I felt I couldn’t help by reply. My situation is a little different than yours in that I was never able to take ATD. Thus, I spent a good bit of time evaluating my options before ultimately deciding to have Radioactive Iodine Therapy. It was a tough call to make, but given that your systems are in overdrive which places a lot of stress on your organs and heart function you have to think long term.

Living outside of Washington DC, I have access to NIH and Hopkins is nearby in Baltimore MD. Thus, I exhausted my options prior to having the treatment. What I can share (and everyone’s experience is unique), is that Graves requires you to be your own advocate because so much of what is happening to you is internal. So, you have to push when you don’t feel you are getting the information you need.

Moreover, I believe your doctor is correct in that you should evaluate your options before having RAI. It may be that ultimately you can bring your thyroid function into control and can hold off on having RAI for a long time. However, the Chief of Endocrinology at Hopkins did share with me that typically in the studies they have performed ATD and the other drug usually only hold off a patient needing RAI. In other words, needing RAI is inevitable for the bulk of people diagnosed with Graves. I don’t have the statistics to prove that, but I have certainly talked to enough people since my diagnosis in May 2008 that I trust that statement.

Lastly and maybe most importantly, while you will get better I think it is better to see GD and recovery as a process. This is not to scare you but whatever treatment plan you choose be patient and prepared for recovery to take time. If you have RAI your GD symptoms will go away fairly quickly. Then you will have to wait as your thyroid function dies off. This was probably the most challenging part of the process for me because I went from feeling like a speedball to a turtle. I was incredibly hyper though. Again your experience will differ. While the time spent waiting for my thyroid function to cease was tough because I had low energy, fatigue, and gained weight, once the doctor started my on levoxyl (same thing as synthyroid), I started to feel like myself again. There were 2 months for me overall that were challenging, but that was by far better than spending another summer sweating, feeling like I was jumping out of my skin, and all the lovely symptoms of GD. Now I can honestly say I am glad I bit the bullet and suffered through 2 months of lethargy (but just lethargy, not aches and pains) and have my life back on track. I find now between working out, proper rest, a good diet, and ongoing monitoring of my TH4 etc. that my life belongs to me and not the dark passenger of GD.

Best of luck to you,

Beth

[MaryI]

#1062319

Thank you Bobbi for your reply. You are right to say that I should be asking questions about why I don’t feel good. The endo monitoring my levels is a 5 hour drive away and I see him soon, but haven’t seen him since October. It was once a month previous.
Should I see my local Family doctor with any of this or is it a waste of time. Who should be co-ordinating any extra tests- the Endo or the GP. Before this happened I hadn`t seen a doctor in 6-7 years so am not sure of the protocol.
Thanks so much for your help!

[snelsen]

#1062320

Hi Mary,
I echo Bobbi’s comments.

Glad you wrote. I have a few questions for you to add to your questions. And a comment or two.
1. What is your heart rate? This should be reported, I am wondering if you should be on a beta blocker (decreased the heart rate.) A rapid heart rate can be very concerning. And it sounds like you are on an ATD, but not anything to help you with tremors and heart rate.
2. Do you get copies of your labs and reports from your doctors?
It’s a super good idea, and you can learn what they indicate. Labs, plus how you feel, will be part of your life for the rest of your life.
3. Labs. THere is no reason why you cannot have them done locally. At certain times you need labs pretty frequently, to regulate your ATD dose. And you will always need labs, but at the end of the road of all of this, it will not be very frequently.

5 hours is a long way! But I am assuming that you live in a small community? At some point, when you decide whether to manage Graves’ with ATD’s, surgery or RAI, you probably will need to be at a major medical center for surgery or ATD’s.
If you find a good endo who is engaged, informed and cares, you can do most of it long distance, as long as you have good email or phone communication with him/her. At this point, you certainly should be much better than you are. No, this is NOT as good as it gets! Keep writing! Keep us posted, and continue to read posts.
Shirley

[Kimberly]

#1062321

MaryI wrote:Another question- do most also see their family doctor on a regular basis – I haven`t been for about 7 months.

Hello – I’m on anti-thyroid drugs and I see my endo about every 3 months to get labs run. I still see my family doctor for annual checkups. Some general practitioners are actually comfortable working with Graves’ patients and adjusting the dose of Anti-Thyroid Drugs. It might be worth asking your GP if he/she would be willing to work with you on this, since your endo is a 5 hour drive away!

[MaryI]

#1062322

Thank you all for your comments. I think I have a better sense of direction now. This has been very helpful to me.

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