[GravesRookie]

#1182087

sunshineH20 wrote:

Hi Rookie Graves, I too am a rookie, I was diagnosed with Greaves only a week and a half ago. After 9 years. I will see a specialist on Wednesday. I was just wondering how long you waited till you got your RAI treatment after being diagnosed. I have been in bed for 4 weeks now cause I lost so much muscle and I get only a couple hours a sleep a day. I have been off work for 6 months, no money coming in and I have to get back out there and live.

Hi sunshineH20,

Sorry for the late response. Also sorry to hear you are going through this.

I actually only waited about maybe two weeks…my thoughts were “get this done”. After the Doctor explained my situation and my options I went for it. I am older, not REAL old 😆 59. I don’t care for surgeory, so I chose RAI. It was a breeze for me. Looking back it seems like just a bump in the road.

I too had lost a lot of weight, almost 40 lbs in what seemed like overnight….but it was a course of maybe two months. It just started happening, pretty scary.

I still have not started any thyroid meds as you could see from my last post. My last trip to the Doctor, he told me it could be a couple of months before everything is to the point to begin medication, much like buriedsunshine.

I can say to you right now, it does and will get better, hopefully soon, so you can be back to your old self and start enjoying a since of normality (if that is even a word)

I wish you the best with what ever treatment you decide. Again, sorry for the late response.

as a side note: I still feel great

[sunshineH20]

#1182088

Thanks Kimberly,
I am going today to see the specialist, I don’t even know if he is an endocrinologist or not. But I am going in there with a lot of info and I think that since it has been so long and it has advanced so far that the surgery would be the best for me. I was thinking The RAI would be better but I like the idea of it taking affect right away as I Have lost a lot of my life to this already.( And it did almost cost me my life).

[sunshineH20]

#1182089

Tank you buriedsunhine, I appreciate your input. and I am getting so much info and it helps me to make choices I would never have been able to make without sites and input from people like you.

[sunshineH20]

#1182090

Thanks Graves rookie,
I don’t remember what normal is any more, But I will, for the moment settle for just being able to sleep and have less pain. I was able to deal with the pain as long as I could sleep. So once the sleeping pills no longer worked, I had no control. I sleep only and average of about 4 hours a day and most of that is broken. That has been like this for close to 5 weeks now. I am not big on the surgery either, and thought I would opt for the RAI. When I read that the results from surgery were right away, that changed my mind. I know there are risks, but I was more than ready to die before my diagnoses. I am going in a few hours to meet the specialist and am armed with so much information, I may know more than him. I sure no more than my doctor and internist who were supposed to find what was wrong in the first place. Where I live, depicts who I can see as a doctor and specialists so I have to work with what I get. But this time I will not let them tell me anymore what is best for me as I had been trying to get further testing for my thyroid as long as 3 and a half years ago, but they wouldn’t listen to me. I was only diagnosed when I went to an ER and the doctor saw how fast my heart was racing, My blood pressure and the weight that I had lost. He put it all together. A great big Thank you to Dr. Jeffrey Sirzyk at the Hawkesbury General hospital in Ontario. and thank you GravesRookie.

[GravesRookie]

#1182091

sunshineH20

Best of luck to you, you do have to make the choice based on what is best for ‘you’

By the way, in an earlier post, my technician told me the day I did my RAI that I probably don’t even remember what feeling good is like anymore…:lol: I have to agree

Hope everything works out great!

[sunshineH20]

#1182092

So I went to see the specialist, and like I said I don’t have a choice in who I get to see. He is an Internist and he said almost right after looking at the labs that were done 2 weeks ago (TSH was .23 T4 14.5 WBC 17.1 NE# 13.1 MO#1.1) and without any of my history, I don’t have Graves. He thinks it is Hashimoto’s Thyroid. But wouldn’t I be hypo not hyper? He also didn’t think I needed any treatment. I can’t believe he didn’t have my complete history, Of my high RA test or any of the tests I had in the past 7 years. even though he had the file from my doctor who is in the same office. I have more records than him. Once I showed him my bone scan and told him a bit about my history he decided to do a complete blood work, an ultrasound of my thyroid and a bone density test. I will only see him in a month. That means no treatment. How am I supposed to survive another month?

[sunshineH20]

#1182093

So I went to see the specialist, and like I said I don’t have a choice in who I get to see. He is an Internist and he said almost right after looking at the labs that were done 2 weeks ago (TSH was .23 T4 14.5 WBC 17.1 NE# 13.1 MO#1.1) and without any of my history, I don’t have Graves. He thinks it is Hashimoto’s Thyroid. But wouldn’t I be hypo not hyper? He also didn’t think I needed any treatment. I can’t believe he didn’t have my complete history, Of my high RA test or any of the tests I had in the past 7 years. even though he had the file from my doctor who is in the same office. I have more records than him. Once I showed him my bone scan and told him a bit about my history he decided to do a complete blood work, an ultrasound of my thyroid and a bone density test. I will only see him in a month. That means no treatment. How am I supposed to survive another month?

[Kimberly]

#1182094

Hello – It *is* possible to be hyperthyroid with Hashimoto’s, particularly during the early stages of this condition. Hashi’s usually settles into permanent hypo. There are tests that are *specific* to Graves’ disease, though, including antibody testing (TRAb, TSI – which is done via a blood test) and a Radioactive Iodine Uptake & Scan (that shows how much iodine your thyroid takes in during a 24-hour period).

I understand that you have limited options in terms of health care, but I would encourage you to please be persistent in getting someone else to review your case. Is there some type of oversight board for the system that you are working within? Local media outlets that might be interested in your story? You know your body and you know that something isn’t right!

[sunshineH20]

#1182095

Morning Kimberly,
I think am in even more of a pickle if it is Hashimoto’s, because I had a DVT in my leg when I was 16 and I have Osteoporosis. I can not take most hormone replacement medications. I am so tired and can’t sleep. And when I do something as simple as driving to my appointments I come back completely drained. I am thinking That I will take all my file and go to another clinic. I would have to start all over again, but at least I have somewhere to start this time. I will have to wait at least one month before I see the Internist. What do you think?

[Kimberly]

#1182096

Hello – If you don’t feel that your current provider is addressing your concerns correctly and in a timely manner, a second opinion wouldn’t hurt!

I don’t know about the clinics where you are, but most will let you go on a cancellation list so that the office can call you if they have a last-minute cancellation. That might get you in the door a little more quickly.

Take care!

[sunshineH20]

#1182097

I will send a letter to my family doctor and ask for a copy of my history. I am going to go to the clinic here in my town. I should have more test results to bring with me. I will see what they say and hopefully they will help. I am so upset (Grr) with my family doctor that he didn’t even give the internist my complete file. I may have to stick with the internist but how can I stay with a family doctor who doesn’t even keep a record of my past history?

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