[ely2009]

#1071148

Hi there. I, too, have found this board to be incredibly useful – informative and supportive. It’s SO nice to know that we are not alone and that we can’t just "snap" out of it. We may not look sick, but we can feel terrible at times (or all the time). I feel guilty that my husband has to carry more than his fair share, but am lucky that he has never once complained. Good luck and hope this board helps.

Emily

[brendacoble]

#1019360

Hello to all,

First, thank you to all who have posted and replied on this board. I think anyone who is new to this board could get almost any question answered just by searching or reading through the topics.

So my story …………. I have been dealing with GD for almost 3 yrs now, I was diagnosed when my youngest child was 4-5 months old and she was 3 in March. Until recently I have only been treated by my family doctor, who in a weird way also had GD and went right to RAI and that was his suggestion to me. But I choose to try my first round of tapazole treatment (i was also on Inderal for a few months because of my racing heartrate) first to see if I would go into remission without the drastic measure. So I went through that treatment and then after 9 months or so I was weaned off of the Tapazole and was good for about a month or 2, so it’s been so long. Well, yes you guessed it my symptoms came back and I have been on the Tapazole ever since but that was more because I was too unsure about having any other treatments done. That is until recently, I went to my family doctor because of some concerns of bruising and he took my blood for more tests but I said I wanted to be referred to an Endo, so I got one! Yeah, I was so happy. I’ve had one visit so far and saw the NP, who was fantastic. She had all of my counts from the week before and said that I’ve been on Tap. too long and we’re going to have to do something else. She had me go off my Tap completely, which was just changed the week before from 30 mg a day to 25 mg. a day, because I was too hypo. She thinks I will get back to Hyper pretty quick, probably by my next visit. I have to go back on the 26th to see the Doctor and see where all of my counts are and where we go next. In the mean time I have to have a bone density (dexa) test done, another thyroid ultrasound and a whole lot of blood work.

Whew, that was good to open up about that in here. Now the only thing I didn’t get into too much with the Nurse practioner was what route we would take. She did mention that if "this" has happened I might not be able to do the RAI and would probably have to have surgery but Idon’t remember what the "this" was, my terrible memory shut down on me right then. She also didn’t want to talk too much about which treatment to do until they have all my readings back.

My biggest concern right now is to help my husband to understand what I am going through. We have 2 children, a 4 1/2 yr old and a 3 yr old and he has been off of work on a work related injury since Dec and he has been a real trooper going to his PT and taking care of the kids most of the time while I work. But there are some days that I just feel terrible, I don’t want to get out of bed or I don’t want to do the laundry, etc. You all know what I,m talking about. Yesterday we spent half the day at the Pittsburgh Zoo and now today I paid for that, I was completely wiped out and sore. We do have a friend at work who’s wife had thyroid cancer, she had hers removed with complications but she has the same doctor that Ijust went too. I have talked to him alot on different situations and now I just need him to talk to my husband to help him understand what I am going through and how they see it on their side of GD.

I have to thank God for my children because if I didn’t HAVE to get up everyday to take care of them or have them to enrich my life, I truely don’t know where I would be today.

Thank you to all for letting me get this off my chest. I will try to keep posting updates on where everything stands.

Stay strong. Brenda

[Kimberly]

#1071149

brendacoble wrote: She did mention that if "this" has happened I might not be able to do the RAI and would probably have to have surgery but Idon’t remember what the "this" was, my terrible memory shut down on me right then. She also didn’t want to talk too much about which treatment to do until they have all my readings back.

Hello – I know this is an extremely frustruating process, but definitely ask questions and understand the pros & cons of all the options before making a final decision.

Some patients do have success keeping their thyroid levels in check through long-term use of Anti-Thyroid Drugs. So you might press a little further as to why your doctor doesn’t want you to do another round of Tapazole. If you have issues with liver function or white blood cell count, those would definitely be reasons to NOT continue on the ATDs…but other than that, it should be your choice as to which of the 3 treatment options you want to pursue.

Best of luck!

[hyperm]

#1071150

Hi Brenda,

Welcome! I can completely sympathise with you having kids and GD is just not a great combination when you are feeling so unwell somedays but like you say my kids give me a reason to keep on going.

just a quick note to say hang in there! dashing out just now but will send you a PM later.

M xx

[mamabear]

#1071151

I am popping in as well to say hello. I am "supposed" to be in bed (it’s almost 11pm here) but I am up and going as soon as I post this. Hang in there, I have 4 kids!!!

[nmasay]

#1071152

Hi there. I also have two little kids and was diagnosed when my second was 4 months old. I think the best thing to do with husbands is that thank them often. I’m lucky in the fact my husband will cook, clean and do the laundry . He deals with it much better if I show a lot of appreciation and do as much as I can do. Good luck, hth.

[npatterson]

#1071153

I like what nmasay says: "…thank them often". We vasilicate between telling them EVERYTHING that is going on, or not telling them enough. Having this forum to explore possibilities is a great help.

It would be worthwhile to have an appointment with the Nurse Practitioner and you and your husband both go. Just to have someone who has the skills for explaining (while we get all tangled up and confused) seems like it would be an invaluable experience.

The, ask the NP to write it all down and send it to us!

[MS_DEE]

#1071154

I am new to this wed site as well. I was dignose with GD three months ago. I had lost 44 lbs, but now that I taking meds I"ve gained 62lbs. Thats right 62lbs over the cost of three months. Well, I wouldn’t say three months I did start gaining weight until a couple of weks ago and that was right after the doctor up my dose. Im scared and I stopped taking the meds altogether two days ago. I havent told my doctor yet. I went from a size 2 pant to a size 9. Something isnt right. Any suggestions? Oh yeah, I don’t eat a lot. Im average on the food. My body and skin feels tight. I look a lot better, I guess…. Is this normal? It seem excessive to me. Will I ever loss all of this extra weight? I guess I felt that if I stop taking the medicine then my throid will go back to hyer and I will loss some of this weight. There has got to be a happy medium. I know it properly sounds a little stupid, but its the truth. ” title=”Confused” />

[Kimberly]

#1071155

Hello – When we lose weight from hyperthyroidism, it’s often bone and muscle mass, which can cause a whole host of problems…so getting back to our “pre-hyper” weight is not necessarily a bad thing.

From personal experience, I know that gaining weight ABOVE AND BEYOND where we were when we started this journey is very frustrating. However, the priority for now needs to be getting your thyroid levels in check. There are many negative side effects from untreated hyperthyroidism…including thyroid storm, which can potentially be fatal.

Here are a couple of other things to consider, though:

1. How frequently are you having labs run? If you are early on in the process and still trying to get stabilized, hopefully it’s monthly…or perhaps even more frequently.

2. Do you receive copies of your labs at each visit? It’s important to check Free T3 and Free T4 levels, and not just TSH. Because TSH is a lagging indicator, it can remain suppressed long after FT3 and FT4 levels return to a normal range. Unfortunately, some doctors base dosing solely off of TSH, which can send patients into HYPO territory if the FT3 and FT4 aren’t monitored.

3. You might consider keeping a food journal, if you aren’t already. I am a lifetime member of Weight Watchers, so I count POINTS every day. However, for some reason, I still find that it has been a LOT harder to maintain my goal weight since I was diagnosed 18 months ago. I have waaaaaay more cravings these days for “comfort foods”, although I think the journal helps keep things at least somewhat in check.

Best wishes!

[brendacoble]

#1071156

Hello to all & thank you for all of the encouraging words.

I first have to say this – My hubby has been really great, he has helped out around the house and with the kids and I know he is trying to understand what I’m experiencing but unless you are going through this, like any other illness, it’s difficult to put themselves in our shoes. I do try to show him my appreciation as much as I can; I know that is important so he knows how much he means to me and our family.

Nancy has a great idea & I’m going to do just that, I’m taking my husband to my next appt. so he can hear what the doctor has to say and ask any questions that he has. This will benefit me too because I tend to get things mixed up or forget certain things the doctor has said.

Since I was diagnosed with GD almost 3 yrs ago I have gained 45 lbs and that is most depressing for me. Like most with GD and not knowing it, I lost weight but I don’t know how much was from the disease. Before the actually diagnosis I had just finish nursing my daughter who was about 4-5 months old, so I thought the weight loss was from having the baby & then nursing. It was all of the other symptoms that sent me to the doctor. Before I got pregnant with my first child 6 yrs ago I was a gym rat and worked hard to loose a lot of weight and become pretty fit. Now I feel just horrible and that is one of the reasons I wanted to be referred to an Endo specialist, I just want to get back to as normal as I can and not be so tired and run down. I have joined a new gym near our house and at first I was doing really well but then I re-injured my lower back in the beginning of March and after that I started to get really tired every day.

I’ve noticed recently that my bones are just achy, they just start hurting from deep in the bone. I’m wondering if this is because I’m off all the tapazole & because my body is going back to hyper. Has anyone else experience this kind of pain?

Good healthy to all.

Brenda

[susant]

#1071157

Hi Brenda,

I briefly read over your post, so please forgive me if I have missed something. In reply to leg soreness; I experienced incredible pain about 4 weeks after I started on anti-thyr drugs. It was particularly painful when I was at the gym (similar to giving birth out of my toes!!). I discussed this with my physio who consulted an endo, and came to the conclusion that it was due to a change in metobolic rate. I decided to take an anti-inflammatory (voltaren) and a vit c morn and evening. It calmed down after 2 to 3 weeks. I felt extremely frustrated about the fact that I was putting on weight (fast) and not able to work out to combat it. I have since come the conclusion that I personally feel that my mental stability is more important for me than extra kgs on the scale – again it is a very personal thing. Hope this helps, please consult endo about anti-inflammatory advice.

All the best.

Susan

[ewmb]

#1071158

Yes, I have experienced bone pain over the last two years at various times. Especially when I was first taking antithyroid medication to get my levels down. The pain starting coming back at times when I was off the medication hoping to be in remission. I have just recently had RAI- 11 days ago- and the pain is coming back a little. I assume this is from my thyroid dying and the extra hormone being released. When I have had great bone or muscle or joint pain it seemed to come with the inability to maintain my temperature. I have had very cold days with chills etc. that seemed to make the pain worse. It doesn’t really matter what the temperature is outside either. I wrap up in a down blanket and keep a scarf around my neck. I use a rice bag that my sister in-law gave me years ago. You can heat it up in the microwave and it gives you moist heat. You can also put it in the freezer if cold suits your pain relief better. If you don’ t have one you can make one from an old thick sock and some slow cooking rice. This is the cheap kind you get in a big bag at the bottom of the grocery shelves. Make sure you use a towel with it at first so you don’t burn your skin. It can get very hot. I usually do just 45-50 seconds in my microwave but yours might be of a different power so start with a small time and go up from there.

Hope that your pain subsides soon.

EWMB

[Author]

Posts