I was diagnosed with Graves Disease in July of 2001, my TSH levels back then was .01. Out of my three options, surgery, RAI or ATD's i chose the latter even though my endocrinologists thought the RAI would be best for me at the time. I was on ATD's for 12 months before i acheived remission. My TSH over the past four years has run between .6 to 1.5 and my Free T4 has stayed around 1.1 to 1.3. I was not able to see my regular endocrinologist this year and had my family doctor do my blood test last week and my results were TSH 5.7 and T4 6.3. She says that my thyroid seems to be going the other way, to hypothyroid.
I am to be retested in six weeks.
(I am not on any medication what so ever for my thyroid nor any thing else and have not been for four years.)
My question is:
Is this a natural progression of Graves Disease and if i become hypothyroid will i ever have to worry again about my hyperthyroidism returning?
Even though i would prefer my thyroid to stay normal, it would be quite the celebration if i never had to worry about the hyperthyroidism coming back.
Thank you in advance for your answer.
This is not the typical progression, but I have seen in several times. Most likely you have antibodies that both stimulate (ie, Graves with positive TRAB or TSI) and ones that destroy (ie, Hashimotos with positive Tg and TPO antibodies). If the Stimulating is in remission or burnt out then the destruction antibodies may make your thyroid tend towards HYPO. I have seen cases swing back & forth which is tough to manage -- this is rare however. If patients go back & forth, I have recommended I-131 to definitively treat the thyroid then achieve stability with thyroid replacement medication.
Hi! I suppose that the old adage of "the grass is always greener on the other side" is highly applicable in this case. I, am hypothyroid & feel like **** most of the time. I love to be active & happy & have healthy hair, nails & (forgive me....) bowel movements - I've always wondered why I couldn't have the "graves" disease and gone that way (hyper) instead of hypo!! & you are thankful to be hypo now!! I just re-read that, & it sounds a bit "snotty" - IT IS NOT MEANT TO BE!! I am actually just laughing at how funny life is for everyone, & realizing that we ALL go through things that frighten us or make us want something different. So, please accept my apology if I sound sarcastic (truly not meaning to!). As for your question, as you can tell, I am not a Dr., so I will let the doctor in this forum answer your question. I hope, however, for your sake that you do NOT become Hypothyroid. Maybe if you're lucky, your numbers will just be "normal". Good luck to you!!!!
Hi. I know having hypothyroidism is certainly no picnic. I have two sisters who have struggled with hypo for years. My sisters, like you ... think they would prefer the Graves Disease...but dealing with hyperthyroidism can be far harder for the doctors to control. I was given the choice five years ago to go on the ATD's to try and put my GD in remission, but was also told that if the ATD's didn't work or my hyperthyroid symptoms came back that i would have no choice but to have surgery or RAI...ATD therapy would not be an option. I have no desire to be put through either, knowing that the ultimate out come would most likely be hypothyroidism anyways...so if my body has taken care of that transition all on it's own... well then, i think you can understand my 'excitement' a little better. :o)
You sound a lot like me, although the time span is different.
I had Graves over 20 years ago, and also chose to use the ATDs (PTU) over RAI. My endo was very annoyed that I chose that treatment, although I saw no problem in trying the drugs first and then doing RAI if they didn't work. Well, they DID work (and then she told me that I would become hypo over time - but I never did while I was still her patient. Needless to say, I no longer see her).
For the last 7-8 years, my TSH has been between 3-4. I knew I didn't feel quite "right" (once you've had a thyroid issue, I think you become very attuned to the signs and such). But naturally I was always told everything was normal since my TSH fell within the reference range. Even though I brought up the continued controversy about the reference range, it was ignored and I just got used to a new "normal" for me of feeling tired, gaining weight, etc...
Finally, last spring, my TSH jumped out of the reference range (STILL not adjusted to the new recommendations) at around 7.5. I saw a new endo who is very much with it and on top of the latest in thyroid research, etc.. I've started Synthroid and feel like a new woman. :)
When I asked about going from Graves to hypo, the progression, etc., she said that is what she finds is the norm for her patients. She also suspects that I may have spent a little time swinging between the two, which she feels is more common than we believe.
For what it's worth, I would MUCH prefer being a tad hypo than hyper. I felt absolutely horrible hyper (it was severe initially, but I still hated the feeling when it got a bit better). I haven't forgotten what it felt like, even that long ago. It wasn't worth the 20 pound weight loss, believe me! (And that weight comes back anyway). Just the *thought* of going back to that hyper state where you don't have control over your physical and mental states - well, that scares me! At least I felt in control of myself being hypo.
I too will never forget the first year that i was diagnosed with GD. Before i knew what was wrong with me, i remember showing up at my husbands place of employment and telling him that i didn't know what was wrong with me, but i felt like i was going to die.
I didn't know whether i should go to my family doctor or have him take me to the mental ward. It was horrible. I never felt so out of control of my own life before. Even a couple of years after i was taken off the ATD's i still didn't feel 'quite' right. I always felt best when my TSH was between 1 and 2.
I have a friend who also had GD and has naturally gone hypo, with no intervention.
I was diagnosed with thyroiditis in 2001, which returned like the flu. My type of thyroiditis resembled hyperthyroid for the majority of the duration of the illness. I finally had RAI in March/2006 in hopes of stopping the volatile fluctuations (which were reaking major havoc on my heart) but my thyroid "faught back" with a vengeance and I went more hyper than ever before. My T4 shot up to 51 (norm 11-22) and my TSH <0.01. Had to take 3 beta-blockers a day and ativan.....to no relief. Five months later, my most recent test showed that I am now hypo (T4 6, TSH shot up to 115!!) but as with previous blood tests, I am not confident that this will remain. As zyphoid pointed out, we can often fluctuate between the two before leveling out. Due to my hypo state, I started Synthroid and within a few days, my palpitations/tachycardia started coming back. Unfortunately, I don't have an endo who admits to the fluctuations (even though they happen to me at each blood test) and didn't even believe that I was hyper after the RAI treatment. It took me 2 months of suffering to get the blood test that showed my T4 at 51 and TSH at <0.01...for some reason a description of my symptoms alone doesn't seem to be enough. The reality is that my symptoms have been the only accurate indicator of what was happening in my body or of what was to come. He often tells ME how I should be feeling vs. giving me a simple blood test when my symptoms are clearly hyper. It has been a frustrating experience and one that I've been going through for 5 years. What I am 100% confident of is that my periods of hypo have been 1000000 times better than my periods of hyper. I can't even imagine the hyper coming back. I know that many people who have not experienced hyper think that they would prefer it because hypo causes brittle nails, constipation, possible weight gain, etc. But the reality is that it is a NORMAL functioning thyroid that they really want...not hyper. Nice nails, a more balanced metabolism, a healthy digestion system etc. comes with a healthy thyroid, not a hyper one. When someone is hyper they have the opposite extremes....diarrhea, severe heart palpitations/tachycardia, insomnia, tremors, anxiety, fatigue (imagine having a racing heart/anxiety while you're exhausted at the same time....you feel like you're going crazy), muscle weakness, hot flashes, menstrual changes, etc. I can't eat a cracker without my digestion reving up and my heart racing/staying elevated for several hours (not fun feeling like you're having a heart attack for 90% of the day), acid-reflux, feeling like we are on crack, wanting to scream b/c we are so wired up. It is not good to have any disease; but at least when I am hypo, I can listen to my body and rest. I can read a book, sleep, watch TV etc. When I'm hyper, I can't read, I don't sleep for several days at a time, can't walk across the street without my heart feeling like it will bust out of my chest, my digestion is completely volatile, my hands don't stop tremoring. It is like our body is running a marathon inside......but it can't be stopped with rest. Try sitting on the couch or going to sleep in the middle of a marathon run when your heart is 180 bpm I often try to explain to Doctors. I welcomed my hypo symptoms b/c for the first time in 5 years, I was able to rest/relax and felt more myself than while being hyper and feeling like I was on crack (I know I'm using the crack analogy a lot but I have actually never used drugs). It is just a sketchy feeling. What my hypo friends are really saying when they think they want to go the hyper route is that they want to be normal b/c any of the symptoms they list are actually as a result of a normal functioning thyroid and not a hyper one. Now that I've been both, it was horrible enough to be hyper that I would choose weight gain and all the things that come with hypo ANY day. I can't imagine living through another period of hyper. I wish I never had to start on synthroid as it is reving me up and I am having a taste of hyper again, which completely frightens me. Any disease is awful, but once true hyper has been felt, most people stop caring about weight gain and brittle nails and would trade it in a heartbeat for rest. Sigh.
Wow!! You have all enlightened me. As I said in my first post, however, I in no way wanted anyone to think that Hyper was "better" than hypo! No way is EITHER GOOD, and I fully understand that. I am so sorry if I gave that impression to anyone. I guess, however, you were right to say that if we don't know, what we think hyper to be would be better than hypo, but I now realize that it's not.
Are you getting better? Is there anything else they can do?
I have a question for anyone out there who may be reading this: If, for some reason, my Synthroid dose was too high & I then went into a hyper state, could it be adjusted to bring me back to normal? I have been diagnosed with the Hashimotos disease, so I was just curious. I honestly just want to feel normal - not HYPER - not HYPO - as I'm positive that we all do. We must stick together.
Please let me know, & again, thanks for the learning experience. Good luck & I hope you (all) get better!!!
Yes, the synthroid is adjusted to a lower dose if the current amount puts you into hyper range. Right now, my dosage is still being slowly increased.
When my (new) endo and I discussed the reference range for TSH, what she considers "normal", etc., she told me that she's found that for the population who has no thyroid issues or history, a TSH of 2 or slightly higher seems to feel best to them; however, for those who have thyroid problems of any sort, she finds that a TSH of around 1 seems to feel most comfortable to them. So she tries to keep it around 1, depending on the patient.
I *will* say that every time I have an increase in synthroid, I seem to get temporary slightly "hyper" feelings - very alert, the tiniest racing heart, and so on. This scared me at first, because of those awful hyper memories. But each time, it has settled down after a couple of weeks and I feel good. I feel pretty good now, but I am losing weight (and really must) and feel pretty alert, so I hope when I go back in August my TSH is satisfactory to the endo. I think if I increase my current dose, it could end up being too much. Also, though, I think I have been so "un-alert" for so long that I've forgotten what "normal" feels like, so it feels hyper to me! :D
Again, for me personally, hyper was so bad that I've always lived in fear of it coming back. Hypo was bad, but at least I could control my body and my brain (albeit at a very slow pace). I remember going to my family doctor before the hyper dx and saying exactly "Either something is very wrong with my body or I'm going crazy". (I was young and resisted going to the doctor, but almost passed out at work which forced me to follow through).
So you can see how I pay close attention to what synthroid is doing. It's just a lot of trial and error, and time and patience waiting for dosage adjustments to kick in.
Hi! I can't tell you how I am looking forward to the weight loss part of it to kick in. I am actually NOT overweight, but would like to lose 10 lbs., but HONESTLY, I have not lost even 1 lb. in the last 3 yrs. Thank God I haven't gained, but WOW!! It's quite difficult when I'm the one exercising for NO LESS than 90 min./day, eating very healthy, light meals when others are sitting on their "duffs" eating pizza, carbs, etc.
I realize that many people SAY they exercise & eat right, but don't. I'm the one that actually does and has done faithfully for years. I arrange my exercising around my schedules for the day (ie: wake up extra early to jog on treadmill before church). Come home after various things to exercise before dinner. Walk the dog after dinner. I don't mean to go on, but it's just been crazy for me & I'd like to actually do what "normal" people do. I'd like to take one or two days off without fear.
Question for you ZYPHOID: What mcg. of Synthroid are you on & what did they start you on? You said it's been "slow", but you've lost weight (how long did it take to lose?) & now you feel good. I have increased myself to 75mcg. since DECEMBER 2005-too slow as far as I'm concerned. I know it takes time, but I think by now my TSH should at least be in the norm. I'd like a more aggressive approach done for me with the increases of Synthroid. When I adjust my dose, I too feel a bit "edgy", but the difference for me is it's a nice feeling since I had the other way previously. Personally,being as active as I like to be, the energy is a welcome friend.
Please write back if you have a minute. Thanks much!!!!!
I started on .050, am now up to .088. I go back at the end of August for another check. I was first put on synthroid in the spring (March, I think). I have lost 10 or so pounds since, without actively trying (and it fluctuates). That is why I am pleased - and, also the tiniest bit concerned because it's happening without directly trying. I don't credit the synthroid itself with causing weight loss. I credit the fact that the synthroid is working on the hypo which makes me feel more active and normal - and then I move more, feel more energetic, etc., because my thyroid is getting back on track!
I am quite overweight but was not inactive (except when very hypo when I basically slept all day under warm covers!). I blame myself for gaining weight, although I know the hypo problem made it easier (and when I was hyper, that 20 pounds came right back on as it was treated, which is normal - I was very slim then and that 20 pound loss made me look as ill as I felt).
Synthroid itself does not cause weight loss; that has been proven many times. What I do see is myself not falling asleep on the bed for three hours the minute I get home from work, and I've noticed a more regulated appetite (before it seemed to go from one extreme to the other). Because I have a history of kidney stones and this horrible heatwave is NOT kind to those prone to those, I have also been drinking a ton of water to help prevent that as well. So, I think just an overall improvement in my mental and physical feelings have all contributed to the the slow but steady weight loss.
When I have my appt in August, I hope to keep the synthroid at this level as it feels pretty good to me right now. I'm afraid that because I feel a bit "perky" the TSH may a tad too low, or if it's still high, an increase in synthroid may throw me into a mild hyper state - do NOT want that! So time will tell!
Lake Lover: As far as I know, I have one elevated t-antibody (don't know about the other) and had autoimmune thyroiditis episodes, which gave me thyrotoxicosis (apparently a couple of different ones...hashi's, painless etc.). Can you tell me a little more about the antibody connection? My endo doesn't feel that there are any symptoms caused by the elevated antibody alone. I question that. My reasoning is that an immune system that creates an antibody to constantly attack the thyroid must be reaking some havoc in the body and contributing to the reving up feeling that hypers have due to the constant distruction and attack taking place in the body. Then, after the anti-b destroys the thyroid during the thyroiditis episode, it starts the process all over again. Do you know anything further from your research/doc's? Also, I am wondering if the best way to decrease these antibodies is through a thyroidectomy vs. RAI. I wish I had the thyroidectomy option available to me in order to totally destroy the thyroid as RAI at this point has only put me into fluctuations between hyper and hypo and it is difficult to figure out a synthroid dose. My endo (even though he knew how much heart disturbances I had and how many beta blockers I am taking) chose to start me on 50 mcg of synthroid (I am only 130 lbs)....I see from most posts that others (even without the heart disturbance of hyper-t) were started between 12.5-25 mcg and built up from there. After a week of 50 mcg of synthroid, my diarrhea, heart palpitations, nervousness, and digestion problems are back. I wonder how your fluctuations went in the early stages or if you can comment any further on the duration of your antibody elevation after treatment (I see you mentioned that it was elevated for a year after thyroidectomy) and how it contributed to your symptoms. SO sorry about all the questions you just seem to have some knowledge about the antibody connection that my docs are not aware of.
Free Bird 82: My understanding is that your synthroid dose can be adjusted. A great specialist (not an endo) suggested to me that my synthroid dose be based on my symptoms within the normal range. I.e. I don't feel great when my T4 is in the high end of the range and TSH on the low end. I feel better when I am in the normal range but closer to hypo than hyper. Most others (without such a touchy heart to deal with), feel better when their TSH is around 1. In any event, you should be able to decide where your comfortable level is within the norm range and if your symptoms are getting too hyper/hypo, ask to reduce/increase for a trial period. It is trial and error that we figure out OUR OWN PERSONAL happy mediums b/c the range is only a range. It is based on 100 people. What is normal to one body type is not to another. I have already been told that I am in the 1-2% of people who don't fall within the range (i.e. I've tested in the upper end of the T4 range of blood tests, which suggest a normal thyroid, but had a highly elevated uptake scan that would reflect hyperthyroid....hmmmmm, puzzling). A range is only a range based on a handful of the population and we need to be proactive to determine where we fall in that range.
zyphoid: I am relieved to hear that the hyper-t symptoms you felt after an increase in your dose were temporary!! As I mentioned above, my endo started me at 50 mcg, which feels high for me at the beginning stages and I am feeling hyper again. I am hoping it is temporary, as it was for you. I question whether I should have been started at 12.5 or 25 mcg and moved up from there....especially with such a touchy heart. It is odd to still be taking beta blockers every day to pull me down, while taking synthroid to rev me up. Perhaps an unnecessary tug of war if the synthroid could have been started lower (I just started 8 days ago).
I was recently diagnosed with GD. I am going crazy! I am on 10mg of tapozole a day. I desparately want to get pregnant but the doctor want to wait until I have stable levels before the surgery. Should I just wait to see if I will go into remission?
Thanks for the advice. I am going today to get more blood work. I wonder if I can request the hospital lab to call me with it or must I wait for my doctor who is only in the office 2 days per week????
Also, I am very frightened, because I truly do NOT feel any better. I feel the same or WORSE than I did when first diagnosed & on meds. Does anyone get this way? My head is so dizzy/lightheaded, and only had this symptom since thyroid diagnosis....I feel as though I'm really drunk!! I'm not joking. I am actually afraid to drive because I feel drunk - and AM NOT!!
Also, I've noticed in the last week, that I retain water more often - although I'm sweating, I drink water & don't seem to urinate like I used to.
One more question for anyone out there: My creatinine level was .04 (.06-1.4) - a tad bit on the low side. Every other time I've gone it's stayed at a "steady 0.8" until this last time. Does anyone know if I have anything to worry about? My Mother was diabetic (I am not) & hypothyroid. Anyway, she died at an early age (59) from kidney failure & complications due to Juvenile Diabetes. Her creatinine levels were very high though.
Thanks everyone for your help!! I love this forum...
Well i'm not a doctor and i fortunately already had my children before my Graves Disease hit. Personally i would reccommend ATD Therapy to try and achieve remission first and would only consider surgery or RAI as a last resort. BUT, choosing ATD Therapy may not be a good option for you, since you are wanting to get pregnant. If the ATD's put your GD in remission, you would still have the risk of it returning possibly while you were pregnant and that could pose a great health risk to you and your unborn child. I would seek out a good endocrinologist and have a long discussion with them about this.
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