Guest guest Posted August 18, 2003 Report Share Posted August 18, 2003 Marlene, Don't want to dampen your spirits, but it does take several years after RAI to come to normal ranges in blood work, and to have a steady even keel feeling. Every time the doctor makes a change in meds, make sure they have you back no later than six weeks to recheck blood work. Even though I was off Inderal within 2 months of RAI, I got a little hyper once, was back on for a week and then off again. I still had " hyper " restless feelings for another year even though my levels were saying that I was a little hypo. Eventually the " hyper " feelings went away and the doc added T3 (cytomel) with my synthroid, and I became a new person. If your entire body hurts, your levels are not right, but it takes time between bloodwork, and med changes for your body to improve. I was diagnosed April 2001, and didn't get my life back until Feb 2003. Hang in there, and don't back off the doctor, keep at him every six weeks. Jen M doctors visit today > Hi, > Just got back from the doctor, and just needed to write to people who > understand my mood right now. I do not think my husband " gets it " no > matter what I explain to him, print off for him, etc.! > Diagnosed: June 2003 > T3 298.23 Range 40-150 > TSH <0.01 Range 0.30-5.0 > Thyroxine, Free 2.10 Range 0.8-1.7 > RAI June 13, 2003 hurried me in...wish now I didn't do it. > Put on Inderal LA > > Next visit July 19, 03 > > T3 224.28 Range 40-150 > TSH <0.01 Range 0.30-5.0 > Thyroxine, Free 2.26 Range 1.8-1.7 > Put on Ambien to help me sleep. > > Today's visit: > T3 43 Range 40-150 > TSH 0.84 Range 0.30-5.0 > Thyroxine, Free <.50 Range 0.8-1.7 > > Given Levoxyl 1.25 > Taken off Inderal LA. Blood pressure sky high. Put on Lotensin, 20 > mg. > I have gained 8 pounds in the past two months..which scares me it > won't stop!! I have TED. Have tried Punctal plugs. Worked well for > the two days they stayed in!! They are going to try them one more > time. For now I use Patanol drops 2x a day, plus over the counter > lubricant drops to ease discomfort. My muscles are cramping; Siatica > is killing me..etc. All this just hit me today that this may be > my " life " from now on. In my past I never went to the doctor unless > I was really sick. Figured all my symptoms were allergies, old age, > overwork. Little did I know it was Graves. I questioned the doctor > about natural remedies to help with the drugs..no answer. Told him my > concern about the weight..answer was most weight gain IS NOT from > Thyroid problems. Made me feel like crap..it was all my fault. > Basically came out very depressed, and my husbands comment > was " you'll be O.K. as soon as you take the new pills. > I ordered Elaine s book, and can't wait to get it. I have > decided that I AM the only one that can take control of this disease > and get myself better. If you have any suggestions of what works for > you, please send them my way. > Thanks for all your information, > Marlene > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2003 Report Share Posted August 19, 2003 Mirela, I am so sorry you are feeling so terrible. I, too, got married in May of this year. And, this does take a toll on a relationship. He tries, but just doesn't understand. He has had 2 back surgeries and has tangible evidence to his feeling bad,unlike us! We still look somewhat the same, although I can see some changes in my looks...and then there is the " inside " of our heads. Your doctor sounds terrible. You need to be able to go in and see him/her physically. I am considering changing mine just because they do not answer the phone. Everything is done by messages. I live in the Seattle/Edmonds area and there are too many to choose from to not have the best. Good Luck, Marlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2003 Report Share Posted August 19, 2003 > I just hopped on board yesterday. I have been diagnosed with graves > aMay 2002, when I almost died because of an undiagnosed thyroid > sorm. I also have TED big time. I went thru 2 RAIs, one in November > 2002, which did not work, and one in April 2003, which seemed to > have worked. My levels a month ago were still very hypothyroid. T > TSH=48. > I have gained 27lbs since I became sick and I have not seen my > endocrinologist since last November. She prefers the phone over the > office visits. She did give me free reign in when to do my blood > tests. I scheduled the surgeries(orbital decompression) for the TED > for the end of October, as this diod not get better and it is very > painful. > I am presently on 0.1mg Synthroid and am feeling very sluggish and > frustrated. My body hurts a lot.Before I got sick I used to do body > sculpting with weights and aerobics. In the last 2 years I could not > do anything else but walk. > I have blurred vision at times. > My dilemma is wether to change the doctor or not, and wether to take > the Cytomel or not. > I got married 2 month ago, and the syptoms of this Gravews dises > started to take a toll on hte relationship. > What input do you have? Hi Mirela. I reprinted your whole post for the benefit of anyone who missed the first time around. What area of the country are you in? Maybe someone here can recommend an endo. You may also want to try the topdoc lists. I'm not going to say you can't work with her since I don't have enough info but am surprised at her management. What tests are you getting on a regular basis? MInimum is TSH and much more importantly, Free T3 and T4. At this point, with your TED you should have antibody testing done too and I urge you to research the importance of this. Maybe someone here can distill that for you. As far as your marriage goes, I think that on the homepage there's a Letter to the Spouse, or links to it. While it deals with how to care for a hyper mate, presumably your husband knew you when, so he knows a bit about the emotional effects of this disease, as well as the physiological components. Maybe he should be reading this thread also. He'll soon realize that you're making the best efforts you have so far to regain your health, so that the " in sickness " will be over with soon. I don't want to sound like i'm going bell on you (if you're old enough to know who she is ;-) but here's a suggestion that will really reap big dividends: make the effort to do something nice for him every day. Not anything major, just putting away laundry or taking out the garbage, something he'll notice and appreciate. (These are very loose suggestions based on arrangements you may have made.) You'll know that you have the capacity to be giving, even when it's difficult to do anything else, and he may start to feel nurtured enough to give you the nurturing you need through this. Take care, Fay ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2003 Report Share Posted August 20, 2003 Mirela, In my opinion, it is too early to think of eye surgery. Have you seen an eye specialist? Mine has given me Patanol drops and we have tried putting Puntal Plugs in the tear ducts..although they have come out twice for me. We are going to try it once more. During the day I use alot of lubricating drops to ease the dryness..and 2 days ago I quit wearing mascara (which I thought I " d NEVER do ) It seems to have helped too. Be sure to get to a specialist. They should do a battery of tests on you to see the back and insides of you eyes..no pain involved. Take Care, Marlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 Hi Mirela, and welcome, The home page for this group is at graves_support . You can also get lots of information at the Graves' board at Mediboard.com. What dose of thyroid hormone replacement are you on? A TSH of 48 means you are quite hypothyroid. It also worsens the eye problems, which means that getting your levels up will help and you should delay surgery until you are more stable (perhaps you won't need it at that point). Flaxseed oil from the health food store, 1 tablespoon per 100 pounds of body weight mixed with a bit of yogurt, can help reduce the inflammation and improve your eye symptoms. Some people have had dramatic improvement, and I find it keeps my symptoms under control, at least. You should also see a specialist in Graves' eye disease to get a baseline reading. Elaine 's book Graves' Disease: A Practical Guide covers the problem pretty much from A to Z. Plus there's a great wealth of knowledge here from people all over the world. Stress reduction techniques are useful in helping your immune system to heal. But until you get your levels up, no one, including your spouse, should expect you to be " cured. " After suffering briefly with a TSH of 8, personally I'm impressed that you're sounding so energetic. Let us know what you're taking (and if it's been four weeks or more at that dose, an increase in probably needed). In time, you may want a FT3 level as well as FT4, as some people need to fine-tune their meds accordingly, but for now you need to get back to the normal range. Best wishes, Quote Link to comment Share on other sites More sharing options...
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