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Thyroid  (Expert Forum)
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Naturally progressed from graves to hypothyroid
Answered by
Mark Lupo, M.D. - Thyroid Nodules, Thyroid Cancer, hyperthyroidism, hypothyroidism, Thyroid Ultrasound
Thyroid & Endocrine Center of Florida Sarasota - FL
Questions in the Thyroid forum are answered by Dr. Mark Lupo. Topics covered include goiter, graves disease, Hashimoto's thyroiditis, hyperthyroid, hypothyroid, thyroid cancers, thyroiditis, and thyroid stimulating hormone (TSH).
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MedHelp Member's Question

Naturally progressed from graves to hypothyroid

by Gravestohypo, Jul 27, 2006 12:00AM
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.

Doctor's Answer

by Mark Lupo, M.D., Jul 27, 2006 12:00AM
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.
Member Comments (14)

by Free Bird82, Jul 27, 2006 12:00AM
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!!!!

by Gravestohypo, Jul 29, 2006 12:00AM
To: Free Bird82
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)

by zyphoid, Jul 29, 2006 12:00AM
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.

by Gravestohypo, Jul 29, 2006 12:00AM
To: zyphoid
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.

by soooconfused, Jul 30, 2006 12:00AM
To: Free Bird82, Gravestohypo, zyphoid
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