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in reply to: May be a strange question #1171802

Cryocuff! That’s it! Thanks Shirley! I have had 4 shoulder surgeries and only got it on my last one and man, I will never have another surgery like that without one – even if I had to buy one on my own. Mine was “rented” to me for a week (paid for by insurance) and then I had to return it and use regular ice packs. I have some very good large ice packs, but I sure missed my cryocuff machine! When my dad had knee replacement, Medicare paid for a Cryocuff for him, but he would never use it. I considered taking it from him and most certainly will borrow it if I ever have to have another joint surgery (which for some reason I feel is highly likely ).

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in reply to: May be a strange question #1171800

I know you are probably tired of me hijacking your post and then talking about shoulder stuff, but I can just relate to it so much… Re the pain after shoulder surgery, it can be pretty intense. ICE ICE ICE. It is the one thing that will get u through. If you can get the dr to write a script for one of these auto ice machine things (sorry I have no idea what it is called – its like a small cooler that u fill with ice and water and then it is connected to a hose then to a pad that wraps around your shoulder and runs continually – honestly it saved me the first few weeks or so). If you can’t get that, just go get some ice packs before you go in for the surgery, something bendable or even bags of frozen peas or corn works really good. ICE is the key. My first dr for my first 2 surgeries never told me to use and it and with my next 2 it was like a different experience. AND find a place to sleep sitting up for a while – such as a recliner or just a position on the sofa where you can prop yourself up. Keeping that shoulder up with no pressure on it works wonders. Have clothing on hand that buttons up (not slips on over the head) and wear that to the hospital the day of the surgery and have easy food prep stuff on hand that you can open / prepare with one hand.

By the way, there is a remote possibility your other pain is Graves related. The way they found mine is that I was having a lot of muscle pain and weakness and went to a rheumotologist who among other things checked my thyroid. It had just been checked in July and was fine but with this test the following December TSH was virtually undectable. That lead me to an endo and eventually the Graves dx. The only reason I didn’t respond earlier is I think mine my have been related to taking statin med so I dont know which issue it is.

So sorry you are going through so much! I also feel like when it rains it pours! I have been nauseas and dizzy and achey all day and I have no idea if it is the new Synthroid I am taking, hormonal issues, sudden high blood pressure, a drop in blood sugar, passing another kidney stone or just plain stress because I have had a huge (but good) change at work. If I knew which one, I might know what to take or who to call, but mostly I just want to crawl in bed and sleep.

Best of luck on Friday. You’ll pull through great. You sound like a real trooper. Keep us posted on how you are doing.

[NLBatten]

in reply to: Graves and pre-op – what a mess! #1171750

Not sure I track back to what the nausea is from, but with regards to Zofran it does work great. I got it after I had kidney stone lithotripsy and proceeded to vomit all night with bilateral ureter stents in. Not fun. Dr did finally give me Zofran (sublingual is best as someone said) and it stopped the nausea right away. I make sure now that I get it anytime I have anaesthesia. Just be sure you tell the anesthesiologist. (Just an FYI, Zofran is the nausea med not the twilight med they use in colonoscopy. That is 2 different drugs. I think it is just a typo in Shirley’s post.) I am not sure that they will just give Zofran for any reason but you can certainly ask your GP. It is prescribed for use after anaesthesia or for nauseau associated with chemotherapy.

Re your shoulder surgery, it seems crazy to me that they wouldn’t use general anaesthesia. Trust me – 4 shoulder surgeries. I cannot imagine how they could do what you need without knocking you out. The nerve block I have had AFTER I was already under was great as it lasts about 24 hours which makes the worst of the post-surgery pain less – and trust me you are very aware when it wears off. I just don’t see how you can just be “awake” for a shoulder surgery. Not trying to scare you but I just wonder if they didn’t explain it very well. Surely they have to give you something – even if the “twilight” type med for colonoscopy. You might ask them to clarify.

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in reply to: Graves’ plus PCOS #1171641

Not sure on the relation to GD, but if you are speaking of endometrial ablation (such as Novasure or Thermachoice), you cannot (or rather should not) get pregnant after that procedure. Endometrial ablation basically carterizes the lining of your uterus and it isn’t an environment where the egg can survive. I am considering this procedure (in fact discussed with my ob/gyn and did lots of research just this week) and have been told I will need to have tubal ligation before (or at the same time as) the ablation to ensure I do not get pregnant. Perhaps you are speaking of a different procedure, but if not, this is not one you can consider if you intend to birth children. Just my 2 cents…..

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in reply to: Latest Lab #’s #1171617

Sorry to hear you have to have shoulder surgery. I have had 4 of those in my lifetime. 3 on 1 shoulder / 1 on the other. Most recent was about 18 months ago – pretty good size rotator cuff tear.

Just a note though, my understanding is that you really need to talk to the anesthesiologist if your thyroid is unstable. If you can find out who it is, see if you can at least speak to them the night before. Having said that, I was at my ob/gyn this week discussing a procedure she wants me to go through and I asked where my thyroid level would need to be in order for her to consider surgery, and she said as long as TSH was under 4.5 and my endo was ok, then she was ok. Also, I had a surgery for kidney stones with general anesthesia in November of last year before I knew I had Graves, but would guarantee you that I already had unstable thyroid and just didn’t know it and came through fine. (I wouldn’t recommend that though. I was just really lucky.)

Bobbi has told me before exactly what you dr said which is retesting too soon wouldn’t help to show accurate results. I had my very first shoulder surgery post-poned (12 years ago) because the dr was sick and I can’t tell you how disappointed I was, so I completely understand how you will feel if they do postpone, but just remember if they do, it is for your safety and better in the long run. Just as emmtee said, you need to mentally prepare yourself for that possibility.

Best of luck. Keep us posted.

PS if you want some shoulder surgery recovery tips, email me at address in my profile. I am an old pro after 4 of those surgeries. :0)

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in reply to: How long to normal after RAI? #1171592

I am very new to this ride (DX 2/21/12; RAI 2/24/12), but for what it is worth, I felt a lot better within about 3 weeks – at first anyway. My first labs were 4 weeks after RAI and TSH still registered <.008 with slightly improved T3 & T4, but I had more energy than I had in a very long time and and the beta blockers had stopped my tremors, so she took me off them and I did fine. About 3 more weeks (i.e. 6 weeks after RAI), I started feeling tired, nails were peeling, was very cold (not at all like me), gained 9 lbs in 8 days....clearly HYPOThyroid in my mind anyway so I asked them to go ahead and redo labs as I was headed out of town and worried where the numbers were. I retested at 6 weeks and TSH was already 7.8 with low T3 and T4, so they started me on Synthroid (7 weeks post-RAI as they were a bit slow in responding to my test). Apparently Synthroid takes a few weeks to take effect, so I am trying to wait patiently. I don't feel awful but I don't feel as good as I did a few weeks ago. Hoping the Synthroid works soon.

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in reply to: Maintaining employment while dealing with Graves Dz #1171457

Hi Tammy. I don’t have anything really important to add other than I will be praying for you that you get that job. Sounds like it could be perfect for you. Keep us posted.

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in reply to: Kidney issues & GD? #1171526

26 stones??!! Oh my goodness! You poor thing! I wish I had some good words of encouragement for you. I hope your insurance works out soon. The ESWL is VERY expensive (especially if you have in both kidneys). I realize that I really take my situation for granted and am very grateful for my company’s insurance right now – between a major shoulder surgery, kidney stones and Graves Disease all in the last 18 months, they are spending an awful lot on me….

Keep me posted!

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in reply to: Kidney issues & GD? #1171524

I have kidney stones. First discovered stones last June. 3 ESWL (lithotripsies) later still trying to get rid of them completely. Battling a 4mm currently trying to pass. 9mm in other kidney will have to have another ESWL later this summer. These are same stones as last year not new ones – they were so large when urologist found them, she said they had probably been there 2 years or so. D/x with GD Feb 21 of this year. I am told by both urologist and endo that there is no connection, but I’m not convinced. My stones are also garden variety (as my dr calls them) i.e. calcium oxolate. I don’t appear to have other calcium issues that I am aware of though I do have a severe Vitamin D deficiancy that is currently being treated with high does Vit D for a few months. It was that dr (rheumotologist) that found my low TSH and eventually led to GD dx by other dr.

I read somewhere that kidney stones could be associate with parathyroidism but it was speculation and parathyroidism isn’t necessarily connected to GD. Would love to hear if you or your dr turn up any connection.

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in reply to: Fast RAI results – Need Advice about Dr #1171291

Thank you very much Bobbi. That is exactly what I needed to hear. I just couldn’t get a grasp for how quick this stuff changed and since my TSH changed from <.008 prior to RAI to 7.8 only 7 weeks after RAI, waiting 6 to 8 weeks to check it again seemed strange, but I would much rather avoid the rollercoaster to which you speak. I knew I was a little panicky and frankly I get that way about a lot of things especially when I am going to be away from home for a week. I still think the dr's office needs to work on their communication skills and I may at least ask around about endo referrals, but promise to ride it out 8 weeks. Since it's my first time taking any thyroid hormone replacement, I just hope Synthroid is the right one for me and it works for me. If not, I will worry about that in 8 weeks.

Re appropriate timing of med, dr said in the morning with water at least 1 hour prior to anything else – food, drink, supplements, etc. I will definitely get pharmacists thoughts on that as well. I hadn’t thought of that so great idea.

Sincerely thanks. I really needed to hear that perspective.

Wish me luck in Hawaii and that those stupid kidney stones stay right where they are and remain quiet until I get back!

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in reply to: Fast RAI results – Need Advice about Dr #1171289

Thank you for validating my concerns! It is 3:30 a.m and I cannot sleep so I checked my email and dr emailed at 11:00 p.m. She says start 150 mg Synthroid and has called in script – thank goodness! OK, but she says no need to follow up for labs for 6 to 8 weeks. Does that seem right? Does it take that long for the Synthroid to work or should I be looking for someone who wants to check labs more often in the beginning until we get the dosage right?

Re the kidney stone, I have had 3 “blastings” since last June. Believe it or not they are getting better. Started out with 20mm stone on the left and 15mm on the right. Been pretty quiet for 6 months but because I am going out of town, of course they will rear their ugly heads. So good news is I am down to 9mm on the left and 4mm on the right. The 4mm is actually moving into the ureter tube and trying to pass. She said I can pass a 4mm and if I do pass this one then my right kidney will finally be clean. I will have to have the 9mm on the left blasted in a couple of months, but she needs me to lose weight first. Blasting doesn’t work when you are really heavy (and I am classified by the dreaded words – morbidly obese). I explained losing weight while trying to thyroid stable is going to be next to impossible. She said lets wait a couple of months and see what happens. We want to catch it before it grows to large but no anestesia with unstable thyroid (if possible). In the meantime, I am armed with pain meds and a copy of the xray to take with me to Hawaii in case something goes wrong and I cannot handle the pain. (I have done it so long, I think I can probably manage it if it comes up again. Haven’t had any real pain since Sunday.)

Thank you again! I know I am crazy sometimes, but I agree this is a little out of control. Thank goodness my other dr saw that I was requesting blood test or we would be too late to figure it out before I leave town.

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in reply to: Getting better or worse? #1170926

Your dr told you that you were lazy?!! Not ok. Find a new dr. And go see an endo if you haven’t. I had all of those symptoms – though not as severe. The muscle weakness / stiffness is why my GP finally sent me to a specialist – first a rheumatologist and she was the one that tested my TSH level. From there I got referred to an endo who told me that muscle weakness was definitely a symptom of HypER. I also seem to have been have a reaction to Lipitor even though I had been on it for years. I went off for a while and it took about a month to get out of my system, but I did start feeling better. If you are taking a statin drug for cholesterol, maybe talk to your dr (preferably one other than the one who called you lazy!) and see if you can take a statin “vacation”. It helps them determine if that is part of your cause of pain. Re the weight gain, that could also be the propanol. Even when used to treat blood pressure only, there appears to be weight gain associated with it. Most beta-blockers do cause this as they can change your metabolism. It is the beta-blocker that is helping with the tremors and pulse. See if there is an alternative OR you may need to consider the alternatives of RAI or surgery if the meds aren’t working (and it sounds like from your symptoms they are not). (FYI, please do not stop taking the Propanol without discussing with your dr and weaning off of it. I was told beta-blockers could not be stopped cold turkey.) You aren’t crazy or lazy. Don’t let anyone convince you that. Unfortunately you have to just keep pushing the drs and find one that will listen to you and do the right test and make some recommendations for solutions when the ATD don’t work.

So sorry you are going through all this. I have received great advice and encouragement from folks on here and felt much more empowered to make a decision once I heard all they had to say. Good luck. Keep us posted.

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in reply to: Thyroidectomy or Rai that is the question? #1170960

I am really new to this, so not sure how much advice I have. I can tell you that I was diagnosed on 2/21 had RAI on 2/24 and just 4 weeks later, I am feeling a little better with no real side effects – YET. It all seemed a little fast, but I didn’t want to go through the process of potential of meds working and was ready for a solution once they finally figured out why I had been so miserable. In my head, I thought that I could try the RAI with less risk than surgery and then if for some reason it didn’t work, I could choose surgery later. I think RAI is usually a pretty definitive solution, but to me didn’t seem as radical as surgery. Having said that, lots of people on this board preferred surgery as a permanent solution. Depending on where you live and what easy access you have to an experienced surgeon performing thyroidectomy might help you decide. If no very experienced surgeons accessible in your area, RAI might be a better solution.

If you will search for posts by me, you will find my first post and some great links Kimberly provided me that really helped me reach a decision. Maybe that will help. (Sorry I would repost them, but I am not quite sure how.)

Best of luck. I hope you are able to reach peace with whatever decision you make.

Nancy

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in reply to: UPDATE: 4 weeks post RAI – getting better already? #1170941

Thanks for the response Kimberly! It does concern me a little that she doesn’t plan on seeing me for 1 year. Of course I can see her anytime, but just the idea that she would only be watching my labs not my symptoms, worried me a little. I’ll just have to be very aware of my symptoms and call her for an appt if I feel I need to.

I will be vacationing in Hawaii (woohoo!) for 8 days starting in 4 weeks (lasting through 5th week). Any advice in case I have hypO symptoms start that far away from home? Anything that I would need to go to an ER there that couldn’t wait for my return to my dr? My dr didn’t seem concerned but frankly, while I like her a lot, I have gotten much more info from the patients here, so any advice / warning signs is greatly appreciated.

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in reply to: New with GD, lots of questions? Pills or RAI #1170814

Hi Sherry. I was diagnosed with Graves on Feb. 21 and did RAI on Feb. 24. I am same age as you and had similar numbers. (.008 TSH (range .3-5.1)/ Free T4 2.06 (range .73 – 1.95/ Total T3 215.47 (range 90-200) ). When I had the uptake test, they said the result was 53% uptake and that is what made my endo say Graves (the radiologist who adminstered the RAI told me over 50%, they considered to be Graves as 10%-20% was normal, 25% was considered high so 50% was way too high). I did not have antibody or any other test.

My decision to do RAI was very quick, but I read some info that Kimberly posted for me and based on those and my preferences, decided RAI was the way to go for me. The reason for me was 1) surgery just seemed too drastic / risky if there were other options and I have had a lot of other health issues and 4 surgeries in the last 18 months, so I didn’t want another surgery. 2) the meds seemed to me to be a temporary fix and I wanted a permanent solution. I have been sick and miserable too long. I have noticed lots of folks on this board have very strong opinions one way or the other, but I can tell you, that you are the only one that can answer that question. When I read through these boards, I sometimes question making the decision for RAI so quickly, but given the other options, I don’t think I would have changed my mind. I currently do not have any eye involvement either, so I am hoping that I don’t and will certainly keep an eye on it. I haven’t found any info about strongly one way or the other about seeing an eye dr to be sure there are no issues, but honestly from the way folks describe TED, I think you would know (and hope I would) if there were some eye issues.

If it helps, I have (so far) had no side effects from RAI. I HAVE gained 10 lbs which I believe is related to the beta-blocker Atenolol, but I am also VERY overweight and not active too begin with so I can gain weight very easily and the Atenolol brought my already messed up metabolism to a screaching halt. The Atenolol did make me feel much better right away though, so it was worth it for the temporary fix. I go back for my first follow up this Friday, so I am hoping (and will ask) if I can come off the Atenolol or switch to another beta blocker if she thinks I still need it.

Below are the links Kimberly gave me that helped me make an informed decision:

ATA/AACE Guidance:
http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/THY_2010_0417.pdf [thyroidguidelines.net]

“Different Strokes” article:
[url=http://www.gdatf.org/about/about-graves-disease/patient-education/treating-graves-different-strokes-for-different-folks/ [gdatf.org]

If those links don’t work, search for my post from Feb. 22 titled “Just diagnosed w/ Graves – need some reassurance” and you will see Kimberly’s response to me with those links and lots of other helpful comments. I have found the folks on here to be extremely helpful.

You can always try the meds first and see how it works for you and opt for RAI later if it doesn’t work for you. You just need to weigh the pros and cons for your personal situation. Good Luck with your decision and let us know what you decide.

Nancy

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