[mykena]

#1067785

I, too, would like to hear other people’s experiences about this. I was experiencing symptoms that were very much like my initial symptoms and my labs were completely normal. My doctor was prepared to start backing off of the dose of methimazole to see how I would respond but my symptoms (irritability, sleeplessness, heat intolerance) were way out of wack. I was under a huge amount of stress at the time and I told her I couldn’t determine if the stress was making me feel that way or my thyroid. She recommended that I maintain my dosage and knowing that the stress would decrease in the coming weeks, we would just wait it out and see what happens. Well, I went hypo while waiting it out, but my hyper symptoms went away when the stress went away. I’m still trying to understand how it all works.

At my next visit, my symptoms were gone and I was hypo so we backed the dosage down to try to bring things back in line. Since then, I’ve been having symptoms again and generally not feeling all that great but I’m not due for another set of labs until mid Nov.

[Bobbi]

#1067786

You might try keeping a symptom log — like a diary, if you will, noting when you experience the "bad" days, or hyper-like symptoms. Doctors are trained scientifically, which is both the good and the bad news. It is good because they tend to be somewhat objective; it is bad because symptoms that are not "measurable" (i.e. heart rate is definitely measurable) don’t have the impact on them that they should. It might help you to home in on what else is going on in your life that might be affecting the symptoms. One woman on this board, long ago, kept a symptom log and discovered that her bad days were definitely associated with her menstrual cycle. THAT was concrete enough for her doctor to pay attention.

Second: a typical situation for all of us is to go to the doctor with symptoms that we think are thyroid related, and have the doctor tell us precisely what your doctor told you. It isn’t helpful. We don’t feel well, we want it fixed. What I said to my own endo when this situation came up was, "OK. I was hoping it would be thyroid, because that is easy to fix at this point . But if it isn’t thyroid, what IS it???" When the doctor says "It’s not your thyroid," his/her thinking stops. And the problem is that you don’t feel well, and you would like to have it fixed, so you need to keep the doctor thinking about what IS going on.

Wishing you better days, soon.

[BMSol]

#1018909

Hi everyone. I am 29 and I was diagnosed with Graves disease in 2005 and have had my lab values in normal range for a year and a half. I have stayed regulated by taking only 10 mg/day of Methimazole. I just came home from my endocrinologist appointment feeling like a hypochondriac and almost a little crazy and upset. I am actually one of those people who won’t go to the Dr. until they must and I refused to take my medicine for the longest time not wanting to admit I had the disease (stubborn and silly I now know ” title=”Wink” /> ). I am an extremley active person…I’m a single mother, have a busy demanding job, and an avid runner and enjoy working out routinely. I try to stay healthy, but I still experience the symptoms of my graves…or at least I thought. I will have what seems like ‘bad days’. I will wake up with my heart rate elevated, have shortness of breath, feel very anxious. I will drop things and my mental clarity just seems off. I often describe it as a feeling like I am coming out of my skin. And it feels like there is a tightness in my back when I breath which I just associate with the elevated heart rate and shortness of breath. I experienced all of these symptoms while my labs values were out of control… and on a ‘bad day’ I feel just as I did when I was unregulated. I asked my endocrinologist at my appointment today if this was normal and he said it was not and I must have something else going on. He does not explain anything to me and truthfully never has. He just said…that is not how the thyroid works. Those symptoms must be related to something else. If you are taking your medicine regulary and your levels are in normal range… you will not have these symptoms. He has never had very good bedside manner…which I have accepted bc he is considered one of the best specialists in the area. But I have read other posts from people that say they experience ‘bad days’ exactly like I have. Does anyone else experience symptoms while their lab values are regulated?? My endocrinolgoist didn’t explain anything to me and just directed me to see my primary care physician. I am very confused and down about this bc these symptoms are real and I experience them often but yet it feels like my Dr. is telling me they are not. I will get my lab values back in a few days and see if maybe they have changed but I have a feeling they are still regulated. Any thoughts or stories would be very appreciated!

Thanks,
B

[BMSol]

#1067787

Thank you so much for your advice. I will start keeping a more detailed daily log of my symptoms…but I have already been monitoring the ‘bad days’ and I, too, noticed they would occur the week before my period. I brought this up to my Dr. at my appointment yesterday and he immediately told me the thyroid has nothing to do with those symptoms and does not function that way…and that the symptoms were probably related to PMS. He stated that if I am taking my medicine as instructed…my levels would not fluctuate due to my menstrual cycles to the point to which I would experience symptoms. But what I am experiencing are my hyper symptoms…I am probably experiencing PMS as well but PMS doesn’t explain my rapid heart rate, heat flashes, shortness of breath and trouble concentrating. They are my classic hyper symptoms and since I have begin monitoring them for the past 3 months, they have become consistenly noticeable right before my menstrual cycle. You mentioned the individual who told their Dr. this…that their Dr. showed concern-and mine told me they were unrelated. I am just confused and thinking of changing Endo’s bc mine does not explain anything to me or give me any treatment options. I am not looking for more medicine or anything like that…I just would like my Dr. to tell me what all is involved in my disease and if the symptoms are just something I have to deal with then I will. Does anyone know if the menstrual cycle has an affect on Thyroid function/Grave’s Disease? And when he would tell me it’s not my thyroid…I did ask ‘what is it then’ and he said I should go ‘see a lung guy’. He didn’t refer me to anyone or give me any direction. My Dr. makes me feel like I am searching for their to be something wrong with me when in fact it’s the opposite. I am just frustrated and venting…thanks!

[ewmb]

#1067788

Hi,
It does affect the amount of estrogen that you have in your system. I can’t remember where I read it but I was always telling my doctor’s the same thing. My gyn finally told me that I was right. He said he didn’t understand exactly how it worked but that having more or less estrogen affected the amount of thyroid hormone that was available to be converted or something like that. I wrote a few other posts about it when I was writing a lot more on the board at one point. You can click on my signature to see all my posts at once. Keep telling them what you feel. They don’t all know what they are talking about and I got bits and pieces of useful information from several kinds of doctors when I was first really sick.

ewmb

[LaurelM]

#1067789

Hi,

Other things to consider:

1) You may be in the normal range but it is not YOUR normal.

2) Maybe your thyroid has occasional days that it works overtime but they are not frequent enough to substantially change your overall numbers.

3) Just fluxuating IN the normal range can produce symptoms.

Just some other ideas.

Laurel

[gdoregon]

#1067790

Hi B,

So glad you posted this. We are presently having the same problem with my daughter and her endocrinologist. She is 19 and was diagnosed a year and a half ago. She went into remission about 4 months ago. A few weeks ago, she started having symptoms again. Her father and I noticed, as well as her younger sister. She went in for her blood test and it came back normal. She e-mailed her endo and told him that although she had a normal TSH (on the low side of the range), she was developing symptoms, palpitations, crying, nervousness, irritability. She asked to be put back on meth but he e-mailed back that since she was in the normal range, he would not prescribe any and that she should see her GP.
I searched through our old medicine drawer and luckily I found her unfinished meth from before. It’s been 4 days now and she is getting noticeably better. I’m switching endos and will keep on switching until I find one that sees her as an individual and will take the time to see her.
A good doctor will not be so dismissive and maintain that his/her word is the end all. I can say this because my husband is a physican and surgeon, trained in Europe and he is often disappointed with how many doctors here fail to examine, listen and inform the patient.

P

[lulu72]

#1067791

Hi Everyone,

I am new here and trying to find some answers. I was diagnosed 2 years ago at 35 years old and almost 2 years ago I did the radioactive iodine treatment. Once I became hypo I gained about 15 pounds. My labs have been normal for close to a year and I am taking Levoxyl. For the last six months I have been exercising regularly (never did before) and watching what I eat. I have always been thin, so 15 pounds is a huge deal. So it seems no matter what I do I can’t lose this weight. I haven’t even lost a single pound. Very, very frustrated. Also, within the last three months I have been tired alot more. Of course my endo says it has to be something else because my labs are normal. I did see my GP and he said that I should continue what I am doing and take more fiber to feel less sluggish. So I have been doing this religiously and don’t feel any better. Long story short, I spoke to another woman who was on Levoxyl and didn’t feel much better, but her labs were normal. She then convinced her doctor to switch her to cinthroid (sp?) and she says she now feels much better. I am wondering what other think about this. I did mention it to my endo and he thinks I am doing fine on the Levoxyl because of my labs, so I don’t know if he would switch my meds and I don’t know for sure if that is the answer. I would appreciate any feedback. Thank you!

Lulu ” title=”Smile” />

[Ski]

#1067792

The differences between meds (Levoxyl vs. Synthroid) can be subtle, but in the end the improvement you heard about may just be that your friend’s body metabolizes Synthroid differently so that whatever dose level she was put on affected her "just right," and more (or less) of the Levoxyl could have served just as well to help her feel better.

Typically doctors do NOT recommend switching between brands (or to/from brand name and generic) because small differences in the fillers can result in your body metabolizing the dose differently, so you actually begin an entirely new process of adjustment to find the "right" spot for you.

It’s true that you need to find YOUR normal before you will really feel right on replacement hormone, and it’s best to have a doctor who will support you in that search. It will take time. Each dose change needs 4-6 weeks for your body to completely adjust and for blood tests to accurately reflect what’s happening.

Also, once you’ve hit "your" normal, it STILL may be a while before you really, truly feel better completely, because your body can only then BEGIN to heal from the effects of hyperthyroidism on your body, which are many and as varied as the Graves’ patient themselves. We are all different, and nobody’s experience can conclusively say what will happen with you. Best to know what you’re doing, and proceed accordingly.

[lulu72]

#1067793

Thank you so much for your input Ski!

-Lulu ” title=”Smile” />

[jlw]

#1067794

About two months ago I was feeling this same thing. I was diagnosed with Hyper last August ( about year and a half ago). This past summer I was still feeling hyper/hypo – just not right. I kept telling my endo that I wasn’t right, but my levels were normal. I finally asked myself (seriously) if I’m better, why don’t I feel better? It took a friend to say that she was concerned about me. I went to my PCP and she explained that thyroid hormones and seretonin can become entwined. She gave me an antidepressant. I can honestly say that after two months I feel great! I haven’t felt that in years. I feel 100% comfortable with taking the antidepressant. Obviously for me, my hormones are not normal regardless of which one it is. I was feeling frustrated with my endo as well, thinking it must be thyroid related. This Graves stuff is stressful and crazy.
I am getting wary of being taken off the meds in March. A little nervous about what may happen, but I will hope for the best.

[BMSol]

#1067795

I haven’t been able to check these posts as I have been out of town with work and of course overwhelmed with life as we all are!! But it is so nice to log in and have other individuals who understand where I am coming from make comments back and share their experiences… so just wanted to say a quick thank you!

Also, over the past few weeks….I have recently starting reading about the thyroid. I am currently reading "Graves Disease: A Practical Guide" by Elaine Moore and "Living well with Graves’ disease and hyperthyroidism : what your doctor doesn’t tell you– that you need to know" by Mary J. Shomon. I cannot explain to you the amount of insight I have gained from just beginning to read these books. I have a Bachelor’s degree in Nutrition/Exercise Physiology so I have a basic understanding of how the body functions (I do not practice currently and am in a different field now so unfortunately you definitely lose what you don’t use!) So as I read these books, I am starting to piece together my symptoms and begin to make sense of this disease and how INDIVIDUAL the treatment must be. I have decided to changed endocrinologist as I don’t feel he is treating me and my disease fairly. I suggest everyone become actively involved in their own treatment plan. While I feel it is the responsibility of the Endocrinologist to educate me to the best of his ability…I also think we need to educate ourselves.
Have so much more to say but must run…hope everyone is feeling well!

Have a great week!
-B

[stargazer]

#1067796

I used to write to this board when I was first diagnosed with Graves 7 years ago. I had RAI and I also suffer from TED but only when my levels are off. My life changed after a few years and I got more used to how to deal with my thyroid and I stopped writing to this site. I have had some ups and downs with my dosages throughout these 7 years even though my lab results are always "normal". My doctor and I have finally come to realize that my level has to be much more in the center of the charts than wavering off in either direction..therefore my dosage amt. has to be very accurate in order for me to feel "normal" and they don’t make the meds in my dosage. The closest we can come is that I need 93.5 mgs. of synthroid which means I take a 25 mg. pill and half of a 137mg. pill each time. I also have come to realize that for my body its best if I take the exact same amt. every 24 hours without variation. Therefore, for me it works best if I take my meds at 3:00 a.m. It sounds weird but by that time my stomach is totally empty (4 hours are needed to empty the stomach) and I do not eat anything for hours afterwards so no foods can interfere with the absorption. Its a ritual that I have come to accept as normal..waking up every night to the alarm and taking my pills with a good sized glass of water. I keep bottled water and my nightly dosage next to the bed.
However, I have recently been going through an extreme case of HYPO symptoms. One year ago I was feeling better than I have since I was first diagnosed. I finally had my meds figured out and my schedule of how to take them and I was flying high…my hair was thick and luxurious feeling, my skin was soft, my nails were hard and long, my eyelashes and eyebrows were good, I felt super healthy and like I said, ON TOP OF THE WORLD – no mood swings, my eyes were great, everyone gave me compliments on how well I was looking. Then, about 6 months ago, I decided that I should go on a healthier eating regimen just because I wanted to do the best I could for my body. I created healthy muffins that I eat 2 or 3 of every single day. They are loaded with everything that the experts say are good for our bodies, organic fruits and berries, organic vegetables, nuts and healthy flours and whole grains – no fats, no sugars, no salt..just totally healthy. I also make homemade soups that are loaded with kale, mustard greens, rutabaga, brocolli, cauliflower, garbanzo beans, brown rice…I could go on and on listing tons of healthy foods that I have incorporated into my diet. Long story short, for the last three months I have been losing hair to the point that I am just like I was when I was first fighting Graves, my skin is dry and my nails have all broken off, my eyelashes are almost gone, I have heart palpitations, rapid heart beat, night sweats and day sweats, I am anxious, I am depressed and most of all, my TED problems are back and everything is blurry and my eyes hurt and are bulging a bit and I see double. Three months ago I had 20 – 20 vision and I did not need reading glasses for the finest of print..and I am 64 years old. ……I could go on and on and list all the other symptoms of HYPOTHYROIDISM that are causing me trouble because I know that is what this is. I am perfectly healthy in every other respect. I have had a thorough medical checkup with tests and I am good on all counts except that there is no answer to my problem. My lab tests came back normal for TSH and for T4 but my T3 shows that I am just at the edge of being HYPO. My doctor upped my dosage of Synthroid by just a teensy bit but so far I am still having all the same problems. Today, I was so exasperated I googled "Graves Disease and Soy" because the only thing I can think of is that my diet has changed. Most articles stated that there really is no relationship to soy or other foods regarding the thyroid, unless you are eating them close to when you are taking your meds. Then I found an article that contradicted that information. It said that soy, walnuts, high fiber foods, kale, brocolli, cauliflower and other cruciferous foods can all play a part in how your thryoid hormone works during the day. I do not know if this article is written by reliable experts or not…but it sure does explain to me what has been happening to my body. I am convinced that I am eating these foods in excess and that I need to cut way back on them. Another article said that if you eat these foods you should also be getting iodine into your system to counteract their affects..especially soy. Well, I have cut way back on salt in my diet and I do not eat shellfish because I thought Iodine was bad for the thyroid. My source of anger here is that no one ever told me this stuff and I had to learn it on my own. I realize that I have gone overboard in my zealous efforts to be super healthy, but why don’t doctors at least tell us thyroid patients that there could be a problem when we over indulge in what I thought of as super healthy foods?
It was hard enough to find a doctor who truly understands how important it is to have the correct dosage and how important it is to not be wavering on the charts. My doctor finally believes that even if the lab tests show "normal" it does not mean that that is where my "normal" is. I think that there are millions of thyroid sufferers out there who do not realize that the charts are not always completely accurate in regards to their particular body. That we all have different bodies and different lifestyles and that we do not all fall into the same exact categories. I think there are a lot of thyroid sufferers out there that do not even realize that they cold be feeling even better than they do if they had more accuracy with their dosages. I am 100% convinced that tons of the diagnoses that are made about our health are actually misdiagnoses because doctors do not realize how truly precarious the thyroid hormone is in our bodies and how important it is to keep everything regarding our thyroid levels completely correct. Instead they tell us we have heart problems and need heart meds, or that we are depressed and need meds for that, or that we have other diseases that require meds, when in effect, we have these diseases and symptoms because our thryoid levels are off. And if they could get us to a "normal" thyroid level and keep us there, then we would not have to take all these other meds.
I dont really know why I am writing except that I feel like someone has to address these issues and we have to keep addressing them until greater strides are made on our behalf. Thank you for letting me get on the soap box for a while.

[wacomom]

#1067797

Who made up this chart that says we are at a normal level??? I had RAI last August, my endo told me my levels were normal in November, now a year later I still don’t feel right. I have gained I don’t know how much weight, my eyes are still hurting, my head is still fussy at times and by 2:00 in the afternoon I am ready for a nap. I have tried to talk to my endo, but he says as long as my levels are normal there is not need to see him. How frustrating! He says I can’t be experiencing these things, because the level is normal, Normal for WHO? I am so sensitive to this synthroid that I can tell within hours of taking a higher or lower dose which direction I am headed, this too he says is impossible. It is so hard to find a good endo, but I think I need to find a new one. Has anyone ever tried a natural rememdy for this, if so please point me in the right direction, I have had it with Synthroid.

[Ski]

#1067798

There are several kinds of thyroid hormone replacement, but they’re all close to Synthroid in terms of efficacy ~ the truth is that the problem is probably NOT the Synthroid, it’s how MUCH of the Synthroid you’re taking. If your endo is no longer willing to see you in order to figure out the correct dose to make you feel right, your general practitioner or internal medicine doctor should be able to walk you through it. Most endos see their role as taking care of the hyperthyroidism, and once that’s done, they toss you back to your "regular" doctor to work with your thyroid hormone replacement dose.

Every time we change a dose of thyroid hormone replacement, it takes from 4 to 6 weeks for our body to completely equilibrate (adjust) to the new dose, and at first, we CAN feel up and down for a couple of weeks, but those effects are transient, and blood levels taken 4 to 6 weeks after beginning the new dose will show how your body is really reacting to the dose.

It can help, as you go through this process, to keep a daily symptom diary. That way your doctor can see which side of normal you are likely falling on (whether you are slightly higher than your own normal, or slightly lower), and they’ll know better which direction to adjust your dose.

It’s never helpful for a doctor to say to you "that’s impossible," it’d be much nicer if they could take a second to fully explain themselves. I wish more did. But luckily, you found us here, and we can help you through it. There is NO "natural" thyroid hormone replacement. There are different brands, and sometimes people do have issues with the fillers in the pills, so sometimes it makes sense to switch, but the majority of people are only looking at issues with finding the right dose. If you change brands, they are not necessarily equivalent in the bloodstream (due to the fillers and such), so it starts an entirely new process of figuring out the dose. It’s easier to start from your current point, get a symptom diary and a doctor who will help (general practitioners or internal med doctors definitely have the schooling required to help you through this part of it), and go for it! It takes a while ~ as I said, 4-6 weeks after a new dose in order to test to figure out where you stand, so even just a few dose changes pushes you out several months ~ but it is VERY, VERY worth it.

Wishing you the very best, and hoping for your improved health!

[Author]

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