[Kestrel August 13, 2012 at 5:52 pm Post count: 3]

#1059278

I feel like I need to give a little bit of history here. I just found this site today and I am hoping that it gives me some hope. I am very discouraged right now and feeling like I am in a no win situation.

I was in the ER about three years ago with a broken shoulder. The nurse (not the doctor) asked me if I had a goiter. I had no idea what that was and said I don’t think so. But of course it concerned me. The ER doctor told me to follow up with my regular doctor so I did. He tested my TSH and told me it was normal. So then I asked well what do I do about this lump in my neck? I was starting to get symptoms of fatigue, pain and numbness in my hands, increased sweating and intolerance to heat. I had had these symptoms for a while and thought that it was because I had gained weight. I have three children ages 5, 7 and 9.

So the doctor did an u/s and told me it was a goiter but since my TSH was normal, I did not need to do anything about it. Luckily, I had a neighbor who had just been through thyroid cancer. With my insurance, I do not need a referral and she suggested that I see her Endo. and I did. She tested my T3 and T4FREE and started me on 10 mg of methimazole. She said that I had a condition called Grave’s disease. I went in for blood work every two months and remained at 10 mg for a year. She also did an u/s of the goiter and discovered about 20 goiters in my neck. She did a fine needle biopsy on the largest one and it came back benign.

Then my blood work changed and she reduced the methimazole to 2.5 mg The fatigue increased dramatically as well as the pain and numbness in my hands and feet. I could not sleep, I could not think, I could not get out of bed. I called her with my concerns and she put me back to 10 mg

All was going well and the months in between needing blood work was getting longer and longer. Then about two months ago, I noticed that my largest goiter was growing. I already had an appt with the endo and it takes me 2-3 months to get in to see her so I just waited. I told her that my fatigue had increased and my goiter was growing. She told me that they do not grow. It is a cyst and has no reason to grow. So I thought it was just in my head. She did an u/s and told me it has grown. So now she wants to do another fine needle biopsy. I burst into tears. She asked me what was wrong. I told her that the biopsy was the worst thing that I had ever been through and I did not want to do it again. She had told me that if it started growing we would do surgery. She said to me “you would rather have surgery than a biopsy” to which I replied “yes, it was worse than child birth”. She told me that no one has ever told her that before and she would prescribe me a valium. I told her that she had prescribed me one before and it did NOTHING for me. She told me that I must not have taken it long enough before the procedure but I know that I did. I had called a friend of mine who is a doctor and gave him the dosage she prescribed me. Based on my weight, he told me that it will not be enough. So I am having severe anxiety about the biopsy but if I have to have it done then I do. I asked her why when I already had one in 2010. She told me that there are better tests now and they will able to test the tissues and tell me what my chances are of it turning into cancer. If my percentage is greater than 50% then we remove it, if not, we keep an eye on it. So I accepted my fate even though I was not happy about it.

So then I get a call two days later and she tells me that she wants to lower my dose to 2.5 mg. I told her that the last time she did that, I felt awful and could not function. She told me to reduce it anyway and call her if I start feeling bad. So it has been a week and I can barely get out of bed. I am emotional and feel like my head is in a fog. I can not concentrate. I am frustrated because I home school my three children and we are starting school on Wednesday. I was ready to go until this hit again. I called her today and told her that I am feeling awful and that I cannot function. She told me that my fatigue and the way I am feeling is from the 5 mg and not from the 2.5 mg. That it will take six weeks for the 2.5 to take effect. So I said “I have to suffer like this for six weeks?” She told me that she cannot raise it back to 5 mg because then the goiter will keep growing. So I feel like I am in a catch 22. At a lower does, I feel really awful and cannot get out of bed. On a higher dose, my goiter will keep growing.

So I started doing some research on line today. I was a little confused about all of these numbers and terms anyway. Most of what I read tells me that Grave’s Disease cannot be diagnosed without a radioactive iodine uptake. I have not had one of those. I also looked up symptoms of Grave’s and I have about 80% of them but the doctor keeps telling me that those symptoms are not from Grave’s. I am not trying to bash my doctor but I am also very confused.

So I have been in tears all day. I cannot think straight and I am confused about where to go from here. I want a second opinion but I know that it will take 2-3 months to get in to see another endo. In the meantime, do I have the biopsy done? Won’t the new doctor want to do his/her own? How many biopsies will I have to go through? Is it normal to have one every couple of years? For anyone who has had their meds reduced, did you feel this way with the fatigue and being in a fog. The doctor makes me feel like all of this is in my head but I know it is not.

I did ask for my numbers even though I do not understand them. In January they were:

TSH = 0.67 T3 = 2.9 T4Free = 0.9

Last week:

TSH = 2.15 T3 = 2.6 T4Free = 0.7

So I see that the TSH increased and I am assuming that is why she lowered the medication. I can understand that. But is there anything else that they can give me to help me feel better? I was doing so well. I am so discouraged.

Any advice or encouragement would be appreciated. I know and understand that no one can give medical advice and that can only come from a doctor. I am following my doctors orders (kicking and screaming) but I am still discouraged and do not understand all of this. I just want to feel normal. And I know that with hyperth, weight loss is a symptom but I have gained over 50 pounds since being diagnosed with this. Thank you for listening to my long rant. I really needed to get this all off my chest.

Kes

[KimberlyOnline Facilitator August 14, 2012 at 11:48 am Post count: 4294]

#1173827

Hello – Antibody testing (TSI or TRAb) is often used to get a definitive diagnosis for Graves’. However, for patients who are definitely hyper, but don’t have conclusive antibody test results, the RAIU uptake & scan can help identify other causes of hyperthyroidism, such as thyroiditis and hot nodules.

We are all fellow patients here, not doctors, so the decision on whether to proceed with a biopsy will need to be made between you and your own doc. If you don’t have confidence in this individual, then a second opinion could certainly be helpful. If your general practitioner calls another office directly, that can sometimes help cut through the waiting process. You can also ask to be placed on a cancellation list if your schedule is somewhat flexible. If you’d like to look for other endos in your area, you can check out the “Looking for a Doctor?” thread in the announcements section of the forum.

I wish I had a better answer for you on the terrible experience you had with the last biopsy. The vast majority of nodules are benign (a certain percentage of the population lives with nodules their whole lives and never even know it), but a doctor will need to help you make the call as to whether the ultrasound findings indicate a need for further study.

Weight issues are complicated. It’s more common for patients to lose weight while hyper, but some do gain (either before or during treatment), and it’s not well understood why.

Please check back and let us know how you are doing!

[Carito71 August 15, 2012 at 9:15 am Post count: 333]

#1173828

Hello Kes,

Welcome to the forum. I’m sorry you are going through so much right now. I hope you get the answers you need soon.

As for diagnosis, I was diagnosed with a TSI test. No iodine uptake scan was performed.

Our Drs. tend to lower the dose of Methimazole when our #s have started getting lower because being hypo is also dangerous and because the ultimate goal is to get us euthyroid.

Without a normal reference range it is impossible to tell if you are hyper or hypo but comparing your #s from January and the ones from last week, your T3 and fT4 have decreased and your TSH has increased. The TSH is what lets our thyroid know what to do. Whet it is elevated our thyroid knows to decrease production and when the TSH is low, our thyroid knows to produce more thyroid hormones. It is all a balancing act and with the methimazole it is too b/c it decreases the thyroid hormones. Last week my labs also changed. My TSH increased and my fT4 decreased. My Dr. changed my dose from 30mg/day to 10mg/day because I have become hypo. I don’t have a goiter nor nodules though.

If you feel like you should get a second opinion, you should go for it. The Endo I’m seeing now is the 2nd Endo I see. I stopped trusting the first one after he wanted to stop the Methimazole cold turkey and not see me again until 8 weeks later. My 2nd Endo believes in close monitoring and that works better for me. The general Dr. is a great source. If you have one please talk to him/her if you want to see another Endo so that he/she can help you get in sooner. Keep in mind that the sooner you make the appt, the sooner you’ll see them.

My personal advice is to learn as much as possible about GD, your labs, etc. I have a chart with all my labs and I’m plugging in my #s so that I can see how things are changing. I’m also documenting my symptoms to see when I experience what in comparison to my dose and my lab #s. We are our best advocates, and if we want to, we can be partners with our Drs. A patient can be a great source of information to the Dr., specially if they understand some of what is going on. The Dr. is the expert but the patient can have some knowledge, which will at times ease worries about why certain things are done.

Please keep us posted. Hope you feel better soon.

Caro

[Kestrel August 15, 2012 at 8:23 pm Post count: 3]

#1173829

Thank you Kimberly and Caro for responding. It is clear that I need to educate myself better on GD. I understand why my doctor lowered my medication but I just wish that it did not make me feel so awful. I just wanted to know if is normal to feel this way and how long does it take to adjust? I have three small children and I home school them plus have a disabled husband. I feel like I cannot function and the exhaustion is horrible. Just curious if this is normal or is something else going on with my health. Any advice is appreciated. Thank you.

[adenure August 15, 2012 at 9:23 pm Post count: 491]

#1173830

Hi Kes!

I’m a homeschooling mom as well! I have 4 boys (almost 9 y.o., 7 y.o., 5 y.o. & an 8 month old baby I was diagnosed with Graves after my 4th was born. My endo. did antibody testing and also did an uptake scan to confirm Graves instead of postpartum thyroiditis. I was on methimazole as well (5 mg daily); my hormone levels evened out after 7 weeks, but the drug raised my liver enzymes 8 times the normal amount, so I had to stop methimazole. Six weeks later I had a total thyroidectomy. That was 8 weeks ago. Now I’m on Synthroid and working towards getting that dose right. I had a nodule, but it turned out to be benign.

I did not have exhaustion or any issues with how I felt on methimazole except the liver issues. But, I remember how miserable I was when I was hyperthyroid and could not function either. I attempted to finish our school year the best I could with a lot of help from my in laws until my hormone levels balanced out, but it was very scary and I didn’t know what was going to happen. I had terrible anxiety, panic, insomnia, shaky feeling, tremors, heart palpitations- you just can’t care for your family when you don’t feel well!!! You know that though! It is frustrating when the doctors think your symptoms have nothing to do with your hormones. My doctors believed my hyper symptoms were bc of Graves once I was diagnosed, but at first they thought I had a panic disorder or postpartum depression. I kept saying, no I didn’t. But, no one really believes us until they see for themselves that our numbers are off.

Right now, I feel much better than I did before surgery, but it still isn’t easy as I’m still not quite right with the Synthroid dose. Like with methimazole, I have to wait 6 weeks after a dose change to check my numbers, so yeah- lots of patience… fortunately, I don’t feel too badly- mostly tired more easily and get headaches, but it’s okay. We started school last Monday, so we’re on our 2nd week. I do pretty well, but I’m not 100% yet.

Do you have ranges for your lab numbers? If your T4 & T3 are lower (lower end of the range) your symptoms would make sense- feeling tired, weight gain, brain fog. I would really ask for antibody testing to check for Graves and Hashimotos/ Hashitoxicosis (which can have one swinging between hyper and hypo symptoms). It is good to know for sure on this and antibody testing is helpful. Some say a scan isn’t as necessary. If your endo. doesn’t want to test for antibodies, I would find someone who will- it will help get a grip on what is going on.

Alexis

[KimberlyOnline Facilitator August 16, 2012 at 11:34 am Post count: 4294]

#1173831

@Kestrel – Every patient responds a little differently to the med. My worst time was the first few weeks after starting methimazole, and I’ve done pretty well since. *Anytime*, though, you notice a significant change in symptoms that is affecting your quality of life, I would definitely start keeping a written log and see if you can get into a doctor (either your current one or a second opinion) to get an updated set of labs.

Take care!

[Kestrel August 16, 2012 at 6:55 pm Post count: 3]

#1173832

Thank you Kimberly for the journal idea. I think that is great. It will give me something to actually show the doctor. I really do appreciate all of the advice.

Alexis-it is nice to meet a fellow home schooling Mom. I know that you must understand all too well what I am going through. It has been a really tough week and I am having a hard time determining if it is my meds or all of the stress that my family is going through. I did start school on Wed. but we are only doing half days for now. My husband’s Grandfather passed away at 4:00 a.m. this morning. We were with him for about six hours yesterday and we were able to say goodbye. This is the first funeral that my kids will be attending so it will be a tough week for all of us. The visitation is Sunday evening and the funeral on Monday. Of course I had planned on starting full days on Monday I keep telling myself to just take some time and it will all be ok. My children are also 5, 7 and 9. This is my first year home schooling all three and I am freaking out a little about that. My 7 year old has APD and is dyslexic. I suspect that my 5 year old is as well but it is still too early to tell. She will be six next month and still does not know all of her letters and sounds. It is very frustrating trying to teach two children to read who struggle with it so much. My son basically taught himself to read so it was so easy. We are also preparing ourselves to say goodbye to a very dear friend. He has been battling cancer for two years now and was put on hospice today. He has been our life group leader for the last two years. We met every Tuesday night to study the bible together. His faith through all of this has been unbelievable. His wife and 11 year old son are taking it all so well. I just keep thinking of his son losing his Dad and it breaks my heart. I went to see him today and it is so hard. I just feel like death is all around me right now. So I also had to break the news to my kids and of course it is harder for them to understand why Mr. Curt is dying. And then there is just the day to day of feeling lousy and unable to sleep.

I am always the strong one who is the caregiver for everyone else. My husband suffers with MS and I care for my 93 year old Grandmother. I have to be strong and hold it all together for everyone else. But the last week or so has been really really hard. I am exhausted both physically and mentally. So I think instead of doing school tomorrow, we will all just have a day of rest and family time. My husband’s brothers will be here from MS soon and we will have a house full of people staying with us. So right now it is hard to tell if it is the meds or life circumstances that are causing all of my symptoms.

I will ask for ranges from now on with my numbers and record them in a notebook with my symptoms. Thank you to everyone for explaining more of the numbers to me. I need to educate myself on it all more once life calms down. And thank you for letting me vent.

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