[mvk]

in reply to: All normal but feeling terrible. #1181538

Hi,

I haven’t posted for a while but your post today hit home with me. I do wish someone could explain to me this phenomena of getting a medication change, feeling great for a while and then feeling just as bad or worse. I had my tweak in September, felt so much better and the last week or so have progressively been feeling worse. I am going to go do labs tomorrow and have an appointment the next week with my endocrinologist. I hope I can make it that long. Honestly, I just don’t get it at all. This has been going on since I had RAI in April of 2012. I am sharing your pain and looking for answers with you. I think part of my problem is that I am 63 and my endocrinologist is very cautious about my med changes. Tiny increments at a time. I just don’t understand why initially the change works. Almost immediately I feel better but it just doesn’t last! Hopefully someone can explain!

[mvk]

in reply to: Help with understanding test numbers please #1175732

Hi Beach45,

I needed to hear what you just said. I think I may be one of those people and my endo isn’t even testing my free T3. Always just the TSH and free T4 testing. I felt better for a while when I went up to .175 Levo and then right back to where I was before. I’ve been trying to ignore it frankly. I just get so tired of feeling like crap. Any clues on how to approach the endo on testing my freeT3? I already know she doesn’t think it is necessary. Also, if anyone can give me some thoughts on what OTC products are helping with the dry eye problem. I’ve been using CVS extra strength drops and the gel ointment at night. I don’t think they have been very effective. I am eating as healthy as I possibly can. Also taking a selenium supplement which is supposed to help and I upped my fish oil supplement as it is supposed to help with inflammation. Thanks for any and all help.

mvk

[mvk]

in reply to: hypo after RAI #1175682

Hi Janis4,

There are some real early birds on this forum this morning! I thought I would give you my history as well so you know how crazy this can all go. I had RAI on 4/23/12 and my TSH after was still lagging behind until around 4 months when I tested and it was 72. I think because of my age (62), my endo started me on a really low dosage of Levo (.025) in July which obviously didn’t help. I am now on Levo .175 and my labs look a whole lot better. You are right in my opinion that few people out there know about Graves much less understand it. I do think my TED got worse when my TSH skyrocketed. I am trying my best to control it with drops, gel at night and eating a good diet. I am also taking fish oil which is supposed to be an anti-inflammatory. Time will tell I guess. You are right, this forum is really a good source of information and I think companionship via the web. I am very grateful for it many times over. Good luck on your journey.

mvk

[mvk]

in reply to: Few things to help you feel better. #1175495

Naisley,

Thank you for your synopsis of things we need to do to keep our progress going with Graves disease. It is very helpful. I have changed a lot of things in my life since my diagnosis and continue to try to do the best I can do for my health and well being. It isn’t an easy task but of course there are so much worse things that could happen to you. I find that you just have to focus on Graves so much in your everyday life and it gets frustrating for me at times. The thing that probably gets to me the most is people don’t really think you are sick because you are functioning. I am not one to remind people that it is not really all that easy everyday. I am back exercising which really feels great but need to add an element of yoga and/or meditation to my daily list. I also need to do the journal. It sounds like such a pain in the butt to do it but like you said you start seeing patterns and that would be a good thing.

mvk

[mvk]

in reply to: Sub-clinical Hyperthyroidism #1175459

Hi Amy 3820,

I had RAI in April, 2012. I have had several months of trying to regulate my replacement Levothyroxine therapy. This week I had blood draws and my FT4 is 1.9 (norm 0.8-1. and my TSH is .71 (norm .40-4.50). These are the best results I have had. I am up to .175 Levo/day. It has been 7 months post RAI. I feel a whole lot better and have had ups and downs in these past months. I am a lot older than you (62) and decided that RAI was the best option for me. It is interesting to me that before, during and after this whole ordeal I have always been cold. I never had the hot issues even during menopause. The last couple of weeks I can’t say I’m warm, but I’m certainly not as cold as I typically run temperature wise. No more muscle or joint pain, a lot less anxiety, not so tired and I have actually lost a couple of pounds. It is a huge decision to make and I wish you the best in making yours and hopefully feeling better soon.

mvk

[mvk]

in reply to: Average mCi dose #1174793

Good Morning,

I had 26 mCi on April 23, 2012. It sounded like a lot to me at the time and I questioned the radiologist about it but he insisted that was what I needed. I will have another ultrasound of my thyroid at some point but that has not happened yet. Now the issue, of course, is trying to adjust my Levo to the right dosage which hasn’t happened yet. I just drew labs this morning and have another endo appointment on Halloween. Right now my dosage is .15 daily. I feel better but not great. I hope this information helps you in your care plan. It is not an easy one to make.

Best Wishes,
MVK

[mvk]

in reply to: Weight Gain #1174514

Hi Mariaboo,,

I had RAI 5 months ago. Since then I now have gone hypothyroid and am in the stage of trying to regulate my dosage of Levothyroxine. I went to the doctor this morning and my TSH went from 72 to 38 this past month (she wants me below 2) and my Free T4 is within normal limits at 1.2. We had a discussion about the “process” of getting within normal limits and feeling better. It seems really long to me right now but I am trying my best to be positive about it. This forum is a blessing to help me with this attitude. I am gaining small amounts of weight along the way since losing 35 pounds while I was hyper. I think in total over 5 months it is just over 5 pounds. Ugh! I am being extremely diligent about my diet and exercise. I don’t think I can do any better quite frankly. Beach45 is almost on the exact same timeline as me and it is great to share information with her but keep in mind, we are all a different story to be told. I always will wonder if I chose the right course of treatment but I did not want surgery. I also should tell you that I am 62 years old and that makes a difference as well. Best of luck to you and keep us informed.

mvk

[mvk]

in reply to: Hypo activity post RAI #1174360

Hi Beach 45,

I am sharing your pain it sounds like right now with these adjustments. I just feel awful. Hopefully, this last increase in meds will help all of our symptoms. I totally agree with you that I appreciate my endo listening to both me and my symptoms and the lab values whenever I recognize that things are not going well. My levothyroxine dose started at .025 in July when my TSH went to 7.74 (norm .4 – 4.5) and I felt horrible for the next month till my next appointment and it showed. My TSH went to 72. No wonder I felt so bad. She increased the levo to .100 and I felt OK for about a week and then plummeted again and this time I had the good sense to go get labs again and she increased the levo to .150 three days ago. There is no way waiting a month between doing labs worked for me. I, too, am having lots of muscle pain and my eyes seem much more irritated (which scares me a lot!). My weight is impossible to deal with right now. I am trying really hard to eat very healthy and exercise. I feel so weak right now and I hate all of this. I sincerely hope you start feeling better soon and I hope I do too. Keep in touch.

mvk

[mvk]

in reply to: First Normal Labs Since RAI #1174249

Gatorgirly,

I hope your pain subsides and you start feeling better soon. Bobbi, thank you for the comments about our “general” thyroid health and the timeline. My TSH was 72 a couple of weeks ago and I really was not feeling well at all. Endo wants my TSH at around “2”. I am 4 months post RAI. My endo increased my dosage of levothyroxine to .1 (from .025) so I’ve been on that dose for two weeks now. I can’t say I feel anywhere near “normal” but some days, like today, I question if I even know what that is at this point in my life. I feel somewhat better I guess. I may go draw labs next week if I don’t see any changes soon. I will say my digestive system is working better. I know that is an improvement!

mvk

[mvk]

in reply to: Confused – Post RAI on Synthroid Normal Experiences? #1174095

Good Morning All,

So I went to the endo this morning and thought I’d report what happened to the group. I am about 4 months post RAI now. Last month my TSH was 7.64 (above normal) and I started .025 daily dose of levothyroxine. I guess I should have realized sooner that my hypo symptoms were getting worse and I should have called the endo about it but I am the first to admit that I hate admitting defeat and feeling out of control so I did my labs last week and waited until my scheduled appointment. My TSH was 72 this time and , of course, my T4 is below normal. No wonder I have a litany of hypo symptoms now. Anyway, now up to 0.10 (4x’s as much) on the thyroid med and a better understanding that if I am feeling worse, this is not OK and I need to go get my labs and call the endo’s office that I did them. I should be feeling better soon I hope. Lesson learned. She did tell me this is kind of a guessing game now and can be like a roller coaster for a while. I did request a Vitamin D level test be drawn next labs and also got my flu shot today. She said it was no problem to get a flu shot. Also, warned me of the hyper symptoms if the dose is too high but I did assure her that I do know those symptoms for sure! Take care of yourselves everyone.

mvk

[mvk]

in reply to: Confused – Post RAI on Synthroid Normal Experiences? #1174091

Hi Beach45,

I’m with you girl. I’m so frustrated with the hypo. It is really making me miserable. My endo started me on .25 dosage of levothyroxine. Your .75 sounds really good to me right now. I’ve already drawn labs this month and will see her on Tuesday morning. I am tired, gained 5 pound literally overnight when I started taking it and I cannot get them off. Joints ache, constipated, nails went to hell, etc., etc. As I said before, I am 62 and I guess they can’t go too high with the dosage but I know I am still way hypo without seeing any lab results. My diet (which has never been better I might add) and exercise are the only things keeping me sane right now I think. I’ll report in on Tuesday after I see her. Hang in there. I am assuming from everyone’s responses that it can only get better. Have a great weekend.

mvk

[mvk]

in reply to: RAI yesterday, how long after did you start to feel better? #1173402

Hi susanf,

I had RAI on April 23rd. The first couple of months not much change in the labs. July lab my TSH went from .06 to 7.74 and the others were within normal limits. I am now taking .25 daily dose of thyroid replacement. I didn’t have a sore throat after RAI, went hyper for a couple of days. Since then I can say I am feeling better. My eyes are still somewhat red, dry and itchy. I use the eye drops several times a day. My fingernails have gone to hell. They are thin, splitting and have ridges. This is a new symptom within the past couple of weeks. I usually have very strong, fast growing nails. I am still having some sleep issues. Some nights are fine. Others, I toss and turn and just have restless sleep. My weight is up a couple of pounds in the past couple of weeks since I started the thyroid replacement even though I am being so careful with my intake of food. I am back to exercising and off the betablocker. I suppose if I had to guess I need more thyroid. Another lab draw and doctor’s visit at the end of August-we will see if I am right. Good luck with your recovery. I hope it goes smooth for you.

mvk

[mvk]

in reply to: Vitamin D & Autoimmune Thyroid Disease #1173409

Hi,

I think Kimberly made a reference recently about Vitamin D levels in a study she referred to and I tried to search for it but can’t find it of course. If someone remembers when and where to find this information would you please post it for me. I think I should be asking to get a Vitamin D level drawn and want to be prepared when I see my endo the next time. Thank you so much for the help!

mvk

[mvk]

in reply to: Looking for others input of progress please Post RAI #1173129

Good Morning,

Well I went to the endo this morning and now I am going to start thyroid medication. My T4 is 5.1 (norm 4.5-12.0) and my thyroxine free direct is 0.9 (norm 0.8-1. but the surprise was my TSH is now 7.74 (norm 0.40-4.50). Last month it was 0.06. She doesn’t want it to go crazy so I am starting on a low dose .25 mg and will be monitored from there. She told me it usually takes 4-6 weeks for it to work so I will do labs and see her in a month again. Everything else seemed to check out fine with her. New step for me in this disease process. I guess I was a little surprised it happened so quickly as things seemed so slow since the RAI treatment in April. I gained a couple of pounds this last month as diligently as I am trying to watch my diet and now exercise. I will even try harder this next month. I feel pretty good overall I can’t complain. I know I feel a lot better than I did when I was hyper -that is for sure! Thanks you to everyone for the support and help. This forum is the best resource for me and believe me I looked at a lot of information in the past 5 months since my diagnosis. I’ll be back to let you know how the thyroid meds are going for me.

mvk

[mvk]

in reply to: Looking for others input of progress please Post RAI #1173126

Hi Beach45,

We are on the same timeline I think. I had RAI on 4/23/12. I’m going to the endo tomorrow morning at 7:30 so I’ll let you know how it goes then and my latest labs. If I were guessing, I’d said a little better but slow progress on my TSH. March 0.02, May 0.01 and June 0.06. FT4 March 3.6, May 2.1 and June 1.1. I had another draw last week and will let you know tomorrow. I feel pretty good most of the time but just last Sunday had a lot of muscle pain in my thighs and slight tremor in my right hand. What was that???? I am trying very hard to eat very good. I think my weight is fairly stable (up a couple, down a couple) but I’m really working hard at that issue. Back to exercise and I’m taking it slow and it feels great!

mvk

[Author]

Posts