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in reply to: checking in/questions re: TSH level shift #1063103
Hi lhc11! I remember you very well! Glad you are on the other side of your surgery, for that is the beginning of your path to trying to conceive! Certainly the proctitis is not a bit fun. Are you being treated with either antibiotics, steroids or both? It usually goes away with treatment, best wishes in that area.
I would think your reproductive endo could answer some of your concerns. I know you are well versed in all of this, but he seems like the guy to discuss this with, especially because you re seeing him today or tomorrow.
I think you are very typical of someone who is really trying to get pregnant, and each month seems like a year! I know time is of the essence. But you have a pretty good battle plan laid out already, I think. Have you and your husband decided a atime line for trying with no assitance, then moving to fertility options? That is what my kids did. The tried for 3 years, then they went to IVF, and that took a relatively long time (5 tries) before babies, which she had when she was 40+. She says now that she wishes they had not tried so long before moving to IVF. You have gone through a lot, to get to the stage of actively trying to conceive. I have no idea if these small thyroid lab fluctuations mean anything at all. You might ask if there is good EVIDENCE BASED literature to support anything related to minute changes.
I seem to remember that you two are living at different academic centers because of work? Is that correct? I did not go back to review all your posts. If so, perhaps there were times when timing was a bit off? And, if you had an unusually heavy period, it is possible that it was an early miscarriage. I know I had that experience a couple of times,and there is no way to really know for sure when it is so early, we could just hypothesize this is what happened.
So, those are my random thoughts. Look forward to hearing from you again..
Shirleyin reply to: Going without meds #1063113Bobbi’s suggestions are great! Send her a private message. I am sure that everything about your world will improve when you get on the right dose of thyroid replacement. As Bobbi says, the way you feel, and your symptoms, are related on your Graves’ and in this case, it sounds like you will be soooooo much better when you get some thyroid circulating through you.
Do you have any other lifelines that you have not pursued? I am so sorry that you re in this situation. But if you can begin to address the medical issue, then you will FEEL like looking for a job. Have you lived there very long? Are there any options in your world for moving someplace else, or do you want to? Maybe closer to family? I know that is not a magic answer, I am just casting about for options for you in this predicament.
Sure am sorry, glad you joined this site. There a lot of good people here, and they may have more good ideas.
My state and my city is full of free medical clinics and has a state Basic Health plan, so there are more safety nets here.
Shirleyin reply to: surgery- tub in neck #1063127Great. It is probably @2, a penrose drain. If it is there, it probably will be out by the time you go home. At any rate, you have had good explanations by your doc and the nurse at the hospital.
Shirleyin reply to: New Here: What to ask endo at first visit? #1063120Hi, and welcome!
I am presuming you have your Graves’ diagnosis based on labs, plus symptoms. Do I understand that your only single symptoms is a slight hand tremor when you hold your hands out straight in front of you? That is the usual way it is tested, and yes, it is one of many symptoms. Do you FEEL any different? Do you know your blood pressure? Are you familiar with your heart rate? Is it pretty fast? Do you feel nervous, antsy or anxious?
So, I am asking these questions which do relate to your first visit with your endo. For she will be asking these questions of you. Good to have some answers ready. Based on the fact that you have read a lot, you may have decided for yourself that there is a lot of junk on the internet, as well as valid information, including this site, which is GREAT for support, hearing from others, and learning things. Another good resource is any main academic center. The Mayo clinic comes to mind, but most major medical centers are good.
And, yep, you are right! Broccoli and yoga won’t do it. Your thought to have anti thyroid drugs is probably what you can expect to be prescribed by your endo, plus a beta blocker to control your heart rate if that is an issue. Graves’ is serious stuff. I can’t tell from your post how you are really feeling, how your everyday life is, having Graves’, taking care of a couple of kids, and generally, dealing with your world. Being hyper can be very hard.Endo questions I think of
First of all, when you go, sign a medical release of information form that they will have at the front desk. Write that you want dictated reports and labs sent to you so you have a file for reference.
2. Ask what labs will be monitered, and what they mean. (There are excellent resources on this board from the facilitators about labs.
3. Ask if you can arrange to have your labs drawn BEFORE your visit. Then you have something to discuss when you are GTHERE, rather than seeing her, being told to get your labs, waiting for the results, waiting to hear what it means. I always arranage to have any lab for any doctor ahead of time. It is something the docs rarely think of doing.
4. This first visit will be longer than most, and a lot of it is the endo gathering your history.A comment about minimal treatment and side effects. You re in the first stage of this process, and I want to reinforce that taking anti-thyroid drugs is a very important thing for you to do. Being in a hyper state is not a sustainable state.
Since you have done a ton of reading, you probably already know that the basic three treatments for Graves’ are:
1. Surgery
2, RAI (radioactive iodine)
3. Anti-thyroid drugs
Followed by labs, and if you do #1 or #2, a thyroid replacement hormone.
So you may have some thoughts already. Each person on this post has chosen their treatment based on their personal preference, biases, whether legitimate or evidence based it does not matter (i don’t want surgery, i don’t want radiation, I don’t want anti-thyroid drugs) It matters what you decide. Those are the options.
Main goal now is to get you to a point where you do not have too much thyroxine racing around your body!
Do write with more questions, or ask if I said anything that does not make sense to you.
Shirleyin reply to: surgery- tub in neck #1063125What is the source of information that has prompted you to think this will happen? I am going to put on my RN hat for a moment, and try to figure out what in the heck you are taking about. So I am going to tell you the information below, but it is most likely too much information, and irrelevant to your surgery. So do write back, give more info that prompts you to ask this question. Having said all this, if your surgeon has mentioned anything, it is a reference to #3 below.
1. i probably have taken care of more than 100 thyroidectomies over there years. I also had a thyroidectomy. No tube in anybody of any kind.
2. There are two possibilities that relate to tubes in a neck. The first one simply is not relevant at all, and that would be a tracheostomy or tracheotomy. It is a tube in a neck to provide an airway in emergent situations or for several cancer situations involving the neck, many caused by smoking.
2. THe second possibility is a small piece of soft rubber, called a penrose drain, which is sometimes placed in a wound (incision) for a very short period of time, to drain excess fluid or drainage.in reply to: lugol’s solution #1063131I recently wrote a post stating the reasons it is ordered before the surgery. Not sure if this site searches for the word Lugol’s
just in the title of the post, or anywhere in the content.
I had it before my surgery, too. Yep, the symptoms Bobbi listed are not uncommon. I think the metallic taste is universally common. But the good news is that it is for a short period of time, it has a definitive beginning and end, you will never have to take it again, and it contributes to a very safe surgical procedure!
Pretty soon Lugol’s will be history, and you will be on your way to feeling like your normal self again!
Shirleyin reply to: Hi Everyone #1074203Thank you Kimberly!!!
I fell asleep last night remembering that I intended to mention that, plus how important it is to us eye drops and eye lubricant at night.
Annie, when you see an eye doctor, ask for as many samples as they will give you of eye drops. You will learn which one you like the best. It is super duper important to prevent your eyes from becoming dry. I think I said in another post that this can be very very dangerous for your eyes, resulting in a corneal transplant. Keep a little bottle in the bathroom, the kitchen, in your purse, and a couple pockets of coats that you wear…..
Next year will be your happy new year as you grab your power and take care of yourself with the docs…
Shirlehin reply to: Hi Everyone #1074201Hi Dolphin/Annie,
I am sending my greeting and support to for the coming year 2011.
But Annie, PLEASE PLEASE read carefully the posts sent to you from Kimberly, Bobbi and myself. You will NEVER get better, stronger, happier, and all the other parts of life that you wish you could have, UNLESS you:
1-TAKE YOUR MEDICATIONS-this is how you will feel better.
2-Follow the suggestions given to you regarding organizing your pills, and if this is too hard for you at this time, have your aunt or someone who knows how to organize your pills, help you with this.
3. There is no doctor who can""fix you, make Graves’s go away." It does sound like you have had some good care.
It also sounds like you are making many of your own problems by not taking your medications, going for labs.You have gotten a lot of supportive posts, you apparently have an aunt who is trying to help you. Read these posts again. But YOU have to wake up and small the coffee, and participate in your care. You WILL feel better if you take these meds. You will continue to do harm to yourself and feel crappy if you do not take the meds. You will find it is easier to remember things when you are not hyper. Because you take cardiac meds, AND smoke, perhaps some doctor can get you in a stop smoking program. This has gotta happen. There are others on this board who have recently stopped smoking. EVERYONE who used to smoke, know that it is hard work. So, here is a plan.
1. Decrease your smoking. It greatly increases your chance of TED. Believe me, as someone who has been struggling with TED, I can assure you it is hell, and you do not want to do anything that increases your chance of ending up with TED.
2. Take your medications
3. You have as much information as you are going to get regarding orange soda, or any other sweet drink. If it is critical to your state of mind right now, limit the orange soda to one a day. Now that you have this subject asked and answered, put your energy into the area of taking your medications.Another thing for you to consider about doctors. Imagine that you are a doctor. You have seen a patient with Graves’, and you know exactly how to begin to give back her quality of life back. You prescribe the right medications, and your patient does not take them, or forgets to take them. There is nothing a doctor can do in this situation. Annie, you are really very lucky to have your GP, to have someone recognize your heart problems, and see that you are prescribed the right drugs to help you. But you have to listen to them, and you have to take them. You have said that you have a long history of depression. This is a serious thing, and again, there are ways to help depression. Have you had medication and/or therapy to help you with your depression? When you are depressed, everything looks hopeless and impossible.
You have a lot of support, so this post is intended to be more support, but also give you the knowledge that you have to believe and act on to feel better again. Ya just gotta do it!
Shirleyin reply to: Hi Everyone #1074197This post is to Cindy.
Hi, how are you doing after your thyroidectomy? Things going ok? THere are some good posts about thyroidectomy written today and yesterday that I hope you are reading Have you gone hypo yet? Had any labs since your surgery? YOu have really had a crappy time with this darn disease. I think when you are ready to begin your thyroid replacement, that you will slowly begin to believe that you WILL go back to feeling like a normal person, get your life back. I can relate to most that you have experienced, except the RAI. I had only the surgery. But I have had, and still do, TED, and with most complications that one can have with TED.
Do write, give an update. You might want to relabel your post, so it relates more to your situation now. This thread has ended up being combined with another thread that is addressing different stuff with another person. Just a thought.
Congratulations on moving through another forward stage toward getting your life back, with your surgery.
Shirleyin reply to: Thyroidectomy finally. TY for all the good info! #1063133Hi Thila!
Whoooeee! Congratuations! Your post put a grin on my face, for except for the going hypo part, it brought back memories of my thyroidectomy, and how happy I was! But I have had one episode of being hypo, and it is as miserable in its’ own way, as being hyper!I pretty much followed your path post operatively, no pain meds after I got home, ate some regular, some softer food, for it is like having a sore throat when I swallowed. This resolved after a week or so. The net did not exist at all when I had my surgery, so I did not read any horror stories at that time. I felt confident about my decision, I was 24 years old, confident about my surgeon, and the outcome was just what I wanted. I hope jrusin70 is reading your post, and others that she can find in the search engine.
I take Synthroid, and this topic has been covered before, but since you are new to taking the drug,
I’d like to mention that it is important to take it first thing in the morning, on an empty stomach, with at least 1/2 glass of water. I keep the water and Synthroid by my bed, and the first time i wake up anywhere near early morning, I take it. You should wait at least 1/2 hour before you eat. And stagger any supplements, if you take them, especially calcium, at least 4 hours after taking Synthroid. They interfere with the metabolism of the thyroid hormone. This is easy to do, once you get started right, and then the subsequent labs that you have will reflect accurately the level of circulating and stored hormone.Welcome (back) to the world of feeling LIKE YOU! It is great. Sounds like you are having excellent care, and will have good follow-up. Remember to tell the endo how you are feeling, as well as getting the labs.
What a great way to begin 2011!
Shirleyin reply to: Support Group Leader Training #1066873I am so sorry about your flood! Did you get a brand new house out of it?
Do you know when the next facilitator training is?
I know your post is in 2009, but I was viewing unanswered posts!
Shirleyin reply to: Finally maybe an end is in sight! #1063162Hi, it is so nice to hear from you again!!
Being hyPO is equally life changing! Just different. i am so glad you are moving toward believing that you really will be feeling good soon! It is a darn long trip to get to this point. Best wishes to you, looking forward to hearing from you again.
Shirleyin reply to: Hi Everyone #1074190Hi Dolphin, I have no idea why drinking orange soda is contraindicated with Graves’. What is your reference for this piece of information? Of course, drinking one orange soda is waaay different than drinking many! That would be true of any soft drink, which, generally are loaded with simple sugars and all carbohydrate, which nobody needs, especially to excess.
Hi Annie, welcome to this site. It has saved my sanity during the past year and 1/2 since I joined. You will get a lot of support, and good information from the experiences of all of us. I am not sure where you are with Graves’, and what pills you are taking. The three basic treatments, after the hyper stages is controlled with anti thyroid drugs and a drug for fast heart rate, are:
1. Surgery-many people on this board have chosen this option.
2 radioactive iodine, or RAI-many people on this board have chosen this option.
3. Continuing with antithyroid drugs, ATD’s, and some have chosen this option.So the big point is here, that it is a personal choice, but treatment should happen, in the hyper stage and afterwards.
The goal is to feel like you used to feel, have the labs agree with this/ With the surgery and RAI, the goal is to decrease the amount of thyroid hormone that has made us whacky and sick. Generally, there might be a hyPO phase, which is just as bad as the hyPER phase, and this is the time to believe you really will be OK AGAIN! The endo doc will prescribe the thyroid hormone which we all must have, BUT in the right amount that our bodies used to make before all this awful Graves’.
One name of the drug is Synthroid, that is what I use, but the generic name is levothyroxine, and it comes in generic forms as as well. Do write and tell more of your story!
You are in the right place. Life WILL GET BETTER, REALLY! Maybe we can help you!
Shirleyin reply to: Do any natural/alternative treatments work? #1063332Well, your eyes are changing every 5 minutes because you are in the hot phase! Pretty soon, the measurements will be more consistent, and you will notice less variation from day to day. Deciding when you are in the cold phase, is pretty much dependent on those two variables, the objective measurements, and what you are experiencing. The very frustrating thing form me, was much concern about making a mistake when the hot phase was over, and basing further surgeries on eyes that still might be changing. So I wanted to wait a long time, even though I was so anxious to have the strabismus surgery, hoping to have less double vision. And it DID work! If you know anyone who has had the graft for lower eyelids, tell them to write!
in reply to: problems after OD surgery #1063186Hi Marit,
I see your point about not being able to raise the head of the bed, unless you can convince your husband that he would love it that way! Otherwise, using a foam pillow/wedge or anything that will elevate your head at night WILL help the fluid accumulation, as you have seen by the fact that it is worse in the morning, much better at night. The only other solution I can think of is to sleep in a recliner if you have one. At least you know that this will resolve over time! really!
The prisms work very well for many people with double vision. They did not work for me. I hope they make big difference in a wonderful way when you get them. It sounds like you had the same approach to your OD’S that I had. I had an eye surgery and an ENT surgeon. The ENT surgeon did the medial side, and the eye surgeon did the lateral side.
It sounds to me like you are beginning to see some progress with the swelling, even if slow. At least is not getting worse,a nd that is a sign that it is getting better!
Shirley -
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