[lhc11]

in reply to: Want to have baby #1062986

Hi smj78,

Glad these comments have helped you a little. Trust me, I did not like the thought of surgery either; in fact, I felt like I was caught between three unfair and terrible choices (continued ATDs, RAI, surgery). For what it is worth, it helped me to think of my ultimate decision to have surgery as a "parenting" decision; I think I wrote about that in one of my postings to this board back in May. And I can tell you that even though I had moments after I made my choice of thinking I was completely crazy to have chosen surgery when a non-surgical option was available to me, I have absolutely NO regrets about the choice I made. One thing to ask your endo tomorrow is for a referral for a surgical consult. That way, you can go talk to whomever would be doing your surgery should you choose to go that way and ask some more specific questions (somewhere on this board is a list of things to ask a surgeon about, or the folks here can re-constitute it for you). I found that very helpful in making my decision (even though the surgeon freely admitted that since he’s a surgeon, he likes to recommend surgery!). Let me emphasize again that surgery should really only be an option if you have access to someone who specializes in thyroid surgery and does 50 or more thyroid-specific surgeries a year (I think that is the general number); generally, that’s an endocrine surgeon, not an ear/nose/throat specialist.

If you are looking for my posts, make sure you search for lhc11 (not, as some easily confuse it, lch11).

Hope tomorrow’s appointment goes well.

lhc11

[lhc11]

in reply to: Graves, TED, throidectomy and steroids???? #1063269

Hi Rebecca,

I don’t really have any advice for you but I wanted to offer my sympathy and encouragement, and also say that for someone experiencing fluctuations in her levels/symptoms for going on five years that you actually seem to have it very together; when I was hyper I couldn’t write a coherent two sentence email!

If I were you I would want to ask your doctor what he means by saying that you "wouldn’t tolerate" surgery and what makes him think you would fall into the minority of those who can’t take Synthroid. I’m not saying I don’t believe your doctor, and maybe he did tell you why already, but I’m just curious. I know it happens–one of my neighbors has Hashi’s and then it took forever for her to convince her doctors that she needed to take Armour rather than thyroxine, though this was a long time ago. I asked my doctor about it prior to my surgery in June and she was not concerned (but, as you say, we have access to Armour in the US) — and as it turns out I have been lucky and Synthroid works fine for me. Of course you would not want to take the drastic step of undergoing treatment (RAI or surgery) that would put you in a position of needing a drug (Armour) that you can’t access where you live! So I can certainly understand being scared and sad; maybe asking about PTU is a good idea, if you have not.

On a more cheerful note, many congrats on quitting smoking! That is a HUGE achievement, especially for someone going through what you are, and you should reward yourself with whatever makes you feel most good (other than smoking or any other addictive substance, obviously) right now.

Hang in there,
lhc11

[lhc11]

in reply to: Want to have baby #1062979

One other thing I should have added to my note above is about your puffy eyelids. Before you make your decision about treatment, you may want to confer with an ophthalmologist who knows about/deals with patients with TED (thyroid eye disease, once called GED). It sounds like you might have some of that going on (as my new ophtamologist said, almost everyone with Graves has some eye involvement even if it’s not visible to anyone other than a doctor). The reason I mention this is that there is some small amount of evidence — Bobbi or one of the other facilitators on this board can speak more authoritatively about this than I can — that RAI can worsen already present eye issues while surgery does not (at least, not right away — there are people on this board who have had surgery with no problems and develop the eye issues much later in life). I am so sorry to have to add this to your list of things to think about — Graves gives you a lot to learn about all at once right when you are not in much condition to think about it well — but you want to get an opthalmologist familiar with the disorder in any case even if you don’t have eye involvement.

best,
lhc11

[lhc11]

in reply to: Want to have baby #1062978

Hi smj,

I am sorry you’ve had reason to join this board, though you will find it a very helpful resource. I was diagnosed with Graves about six months after my first pregnancy in 2009 (which unfortunately ended in miscarriage); it is quite possible that that pregnancy triggered my Graves, as you think yours might have. One of my primary concerns about treatment options was exactly yours — wanting to get pregnant as soon as I was healthy again. I did a lot of searching of the word "pregnancy" in the search box of this website, which you may want to do as well; I learned a lot that way. One thing you should know that Bobbi didn’t mention is that doctors recommend 6 months of not conceiving after RAI because of any potential effects of the radiation upon the ovaries (they used to say 12 months, then 9, now it’s 6). I am older than you (now 39), and this delay factor played a large role in my decision to have surgery rather than RAI, because I was able to start trying again (this time, because of my age, with the help of a reproductive endocrinologist) a month after my surgery when my thyroid levels stabilized (I should emphasize that I would have waited until they stabilized no matter what, and I was lucky that they did so so quickly and that I got the go-ahead from my doctor at that point; it could have been a bit longer). I haven’t been successful conceiving yet and am probably moving to IVF shortly, but my lack of a thyroid is not a concern to my doctors other than the general need to keep a watch on my levels and make sure I stay euthyroid on the replacement hormone and don’t slip into hypo range (I only just had surgery in June) — but that’s a concern for anyone who has RAI or surgery, not just for those trying to get pregnant. For the record, while the "normal" range for TSH (thyroid stimulating hormone, produced by the pituitary gland) is anywhere from .5-4.5, for conception my doctors recommend as a ideal a range of 1-2.5. This is the number that will be very low (in my case, like below .003) if you are hypERthyroid, and will be brought up first with anti-thyroid drugs and then with either RAI or surgery. Some people on this board have chosen to stay on PTU (the other anti-thyroid drug) and get pregnant, and my doctor said he’d seen people do that, but ultimately it wasn’t something I was comfortable with, and it sounds like you probably aren’t either.

If you do a search for my username — lhc11 — in the search box, you will be able to read through my whole odyssey, my struggle with and anxieties about the decision, and ultimately my satisfaction with my choice of surgery (which, as I have noted to others, is really only a choice if you have access to an excellent endocrine surgeon who does a lot of thyroidectomies — as I did).

Hang in there and all best to you,
lhc11

[lhc11]

in reply to: Helping Friends with Graves’ #1063095

I just want to say that you are a really awesome friend. My closest friends were supportive of me when I was going through the worst of Graves last spring, but I think most of them Googled Graves once, saw scary eye pictures, were glad it wasn’t them, and that was about it. Less close friends/acquaintances knew I was ill but I found, after the fact, that I had to do most of the explaining about what had gone on with me and what Graves is. On the one hand that was therapeutic, and on the other hand I still feel like some people never really understood how unmanageable things were for me for about three months and how not in control of the way I was feeling I actually was. So, again, you’re a GREAT friend. I think what you are doing is in a way the best help you can give her–if she knows that you really know about Graves, then she knows she doesn’t have to "explain" herself to you. That’s a great gift. I could see how someone (I have no idea if this would describe your friend) could get annoyed if, when they were pushing someone away, were told "hey, I get it, you’ve got Graves" (a la the way we feel if/when men ask if we have PMS), but at the same time at least when she pushes you away, you still know why and so does she.

lhc11

[lhc11]

in reply to: New Here: What to ask endo at first visit? #1063123

Hi KimmiSue,

You sound very well-informed and ready to deal calmly with all that Graves entails, which is great; it’s also great that you don’t have any terrible symptoms and that it’s been caught before they manifest (which they probably would, given time). The only thing I would say about ATD’s and remission (which you already know, I think) is that it seems to me like *most* people who try for remission 1) need to spend at least 18 months on the ATDs before going off to see if they stay euthyroid, and 2) even if they do go into remission, they often slide out of it, sometimes to a worse degree of hyperthyroidism than before (one of the facilitators on this board, James, seems to be a very rare exception — but again, this is all anecdotal evidence based on what I’ve read primarily on this board–which is skewed towards people who are either newly diagnosed or who eventually chose RAI or had surgery, or so it seems–again, just seems–to me; let me emphasize that this is just my perception). And the ATDs, as you know, can cause damage to white blood cells or the liver over the long term, though some people do stay on very low doses (i.e., not strictly "in remission" because not off the drugs) and seem to be fine. I haven’t had children yet and both didn’t want to be taking the ATDs long term (I thought of them as "toxic" to my system) and/or while trying to conceive, which is a big part of what governed my decision to have surgery this past summer. I can totally understand not wanting to do either RAI or surgery — believe me, I felt really stuck between three rocks and three hard places on all of this, as none of the options seemed good at the time (but I’m ultimately very happy that I had the surgery). I think you and your endo will figure out the best thing, and of course if the ATDs don’t work out for you the way you hope, there are still the other options at your disposal. I don’t love taking my thyroid replacement every day, that’s for sure, but it really is no big deal, and I’m personally happier putting something back into my body that it’s missing, rather than putting something foreign into it to tamp down an overactive thyroid.

all best,
lhc11

[lhc11]

in reply to: checking in/questions re: TSH level shift #1063104

Hi Shirley,

Thanks for the response, and I hope you’re doing well, especially with your eyes and recovery from surgery. Re: the proctitis, I was treated in September (after a colonoscopy, blecch) with steroids (cortifoam) and Canasa, the aminosalicylic (sp?) suppository (no antibiotics because it’s not caused by bacteria, which is how they know it is autoimmune); the problem cleared up and currently I’m back on some Canasa because of possibly returning symptoms. I’m still in the process of figuring out where my body is with all that, and will have a re-check with my gastroenterologist in a few months or earlier if I/they think I need it. It annoys me to have this additional health issue more than I’m actually admitting here, but this isn’t a proctitis support board!

Re: conceiving, we’ve been working with a RE and assisted conception (that is, medicated and monitored IUI cycles) since right after my thyroid levels stabilized in July; we did that precisely because of our respective ages (I turned 39 this August) and because of our living situation, rather than waiting any longer to have it happen again naturally (as it did once, the very first time we tried to conceive, which was the first and only time I was pregnant in late summer/fall 2009, which ended in miscarriage–perhaps sparking, or perhaps caused by, the Graves, which of course I then had to deal with once it was finally diagnosed, putting conception on hold until this past summer). I set all of that up with the RE before I even had the thyroidectomy; given my age and our distance this September-May there was no reason to wait. So I have had 5 (unfortunately unsuccessful) IUIs since this August and will have my 6th (and last) in the next week (which is another reason why I wanted to check my thyroid levels); I was not ready to go to IVF before this last round (package deal) of 3 IUIs, particularly given that I got pregnant so easily (and naturally) the very first time around and because the RE was initially confident about this less-invasive mode of treatment for us (no problems on either side except age in my case!), but if the next IUI doesn’t work (and I’ve lost most hope about that at this point), we will have to take a break until May/June, when we will indeed do IVF (since, yes, we still don’t live together during the academic year, and I don’t want to do the injections for IVF on my own) if we don’t manage it naturally over a couple of free weekends that (may) match up with my cycle during the spring semester. BUT there is almost no way I can do as many IVFs as your daughter did; it is out-of-pocket for us and I have family financial assistance for 1 or 2 attempts; I’d be unable to afford it after that unless–and there is actually a small chance of this–work moves me to a state with mandated fertility coverage. I would certainly have started trying to conceive long before now if I could have, but I only started dating my now husband in fall 2007 and only married him in summer 2009. In hindsight, I certainly wish we had had an "accident" before we got married; then again, that might have meant the Graves setting in even earlier than it did, which would not have been good at all (I actually got sick, professionally speaking, at the best possible time, with no ramifications for my work life; a little earlier and that would not have been true). I don’t think my period this time around was unusually heavy, it was just both heavy *and* short, which is what made me concerned about my thyroid levels; plus, it was exactly on time, so I really don’t think it was an early miscarriage.

Anyway, all of the above, except my heavy/short period, is only tangentially related to my concern about my TSH level; having learned today that it is "normal" for conception I’m now not worried that it is interfering, I’m only worried about my overall physical state and whether this change in the level and my other symptoms are potentially indicative of the start of a slide towards the hypo end of things. But I guess that’s something only more time (and tests) will actually tell.

cheers,
lhc11

[lhc11]

in reply to: Hard to get pregnant long after RAI #1063223

I had my thyroid completely removed this summer and am currently trying to get pregnant; it hasn’t happened yet, but I am much older than you (39) which is most likely the reason — my reproductive endocrinologist is in no way concerned about my lack of a thyroid. I did get pregnant in July 2009, but had a miscarriage — which was either the trigger that activated my Graves’ disease or was perhaps caused by my Graves disease. For what it is worth, both my endocrinologist and reproductive endocrinologist wanted me in the EUTHYROID range (not hyperthyroid) before attempting to conceive. Being hypERthyroid for conception is, at least from what I’ve heard, likely to cause miscarriage, while being hypOthyroid can cause developmental problems for the fetus. I would ask your doctor to clarify for you what she means.

More closely connected to what you’re going through: I have a friend with Graves who had RAI in her early thirties and then went on to conceive and give birth to a healthy baby girl at the age of 41. She did have several miscarriages both before and after, but her doctors seem to have felt this had to do with her age, NOT the RAI which was not an issue they were concerned about.

At your age, if you try for a year to get pregnant without success, then it is time to consult with a reproductive endocrinologist; after the age of 35, the general guidelines say 6 months without success. In sum: I wouldn’t fret over whether or not RAI has made you infertile. There may be other issues of which you aren’t aware, unconnected to RAI, but you can conceive a child without a working thyroid in your body (or else I wouldn’t be trying!).

Best of luck,
lhc11

[lhc11]

in reply to: Just a few quick questions! #1063605

Krystal,

I definitely felt suicidal several times over while I was hyperthyroid–so much so that my primary care doctor twice wanted me to hospitalize myself (I didn’t, because I knew I wouldn’t act on it, but she wasn’t wrong to be worried). I remember, for example, making my next 6-month dentist appointment in March and thinking to myself, "sure, I’ll make this appointment, but I could easily not be here in November." Now, with that appointment coming up, it is hard to believe I ever felt like I did back in March. I didn’t feel homicidal but I can see how that could happen.

PLEASE: if you are feeling unable to control these feelings, or even if you just need to talk to someone about them, seek help from your doctor, who can refer you to a mental health professional if you are not already in touch with one. Even if you know the feelings are caused by the hyperthyroidism (and it is a 99% chance that they are), it can help to talk them out.

Best,
lhc11

[lhc11]

in reply to: One month post op –checking in #1063611

I have been wondering about you and am so glad to hear this! (Synthroid under the tongue is weird…I can’t stand the taste of it if it even gets caught in my throat so I’m glad no one has told me to do this…did your endo give you a reason?)

best,
lhc11

[lhc11]

in reply to: Will this get better? #1063661

@Krystal and Sarah — I have been exactly where you are. It took a full 8 weeks on methimazole before I felt at all like myself again; in the meantime, I too was beyond miserable, cooped up in my house, unable to do anything (except go to yoga class, which I believe sort of saved my life). I couldn’t read or watch TV because I had no attention span; I couldn’t garden because it made me feel like a failure; I couldn’t go to work because I would have lost my job; I couldn’t talk to friends because I was driving them crazy; I couldn’t eat because I had no appetite; I couldn’t sleep (as we all know)….I mean, really, until my hormones leveled out I was a hollow shell of my former self–hollow is exactly the right word. But it did finally get better after the longest two months of my life (even looking back now, it feels like it was two years), and then I had surgery on June 9th of this year, which went great, and I have felt great ever since. Krystal, regarding your point about what you’ve read online about people saying they’ve never been the same, it might help to remember something one of the facilitators here (I think it was Ski) wrote to me, namely: mostly, people who come to bulletin boards like these are people who are still having difficulty of one sort or another, so one can get the wrong impression of how the numbers skew. People who are fully recovered just go back to living their lives and don’t spend much time posting things on online bulletin boards about autoimmune disorders (unless they are facilitators or, like me, either procrastinating or wanting still to give something back in thanks for the help they were given while they were ill). So don’t assume that other people’s bad experiences will be yours; it’s scary, I know (believe me, I know), but you have to hope for the best, and the chances are that you will actually be fine once the medication really kicks in for you and you are able to make choices about your long-term treatment plans. As for how I feel: like one of the posters above said, I’m definitely not the same as I was before GD. I’m better–and that’s even despite the fact that I’ve recently been dealing with another autoimmune issue (proctitis, which is not especially pleasant, but not life-threatening either, and not related, at least not in any direct way, to GD). Because in addition to feeling well, I just so appreciate NOT being sick, depressed, and out of my mind with hyperthyroidism. And this will happen for you too. Hang in there.

[lhc11]

in reply to: Newly Diagnosed with Graves in need of some HELP! #1063787

Hi Krystal,

Hang in there. I was diagnosed with Graves in late March of this year, and I remember feeling exactly the way you are now. Even after I knew what was wrong and that I was being treated, it felt like it would never get better; I felt crazy, and anxious, and couldn’t sleep, and everything you have listed. I promise you, IT DOES GET BETTER. But not quite in five days. In my case it was about 8 weeks before I started enjoying life again, and 10 weeks before I actually felt like myself; but you should start to feel at least some relief sooner than that (but every body is different). In the meantime, consult with your doctors about beta blockers and anti-anxiety medication (I am a big fan of short term Xanax as needed, as you will find if you type "Xanax" into the search box just above; everyone has his or her own take on that).

I am someone who chose to have surgery. It was a nightmare trying to make a decision while I was hyper and anxious, but the better I began to feel, the better I felt about my decision, for which I had very important reasons. And everyone, as has already been said, has to make his or her own choice, and every choice is valid. You can find my relatively recent posts about my odyssey by searching for "surgery," or just with my username, "lhc11." I have no regrets at all about the choice I made–but I think you will find that everyone who has made a choice is happy with that choice, which is just proof that there are multiple good ways of managing Graves’, which is a very excellent thing.

You *will* feel better. Here I am, only a little past 6 months since I was diagnosed, and I practically have to remind myself that I have Graves’ disease. That’s how little a factor it is in my life at the moment. It gets better!!! (And this board is a wonderful place for you to have found–I only wish I had found it as early in my experience as you have!). Again: take your ATD’s, read as much as you have time for on this board, post about your worries/feelings/symptoms/questions, and hang in there.

Best,
lhc11

[lhc11]

in reply to: flu shot? #1063861

Thanks, everyone, for the responses. I am very pro flu shot, not least because if I don’t get one, my mother nags me to death about it, and the college students I teach get the flu all the time. I just truly couldn’t remember what the story was vis-a-vis the vaccine. I’ll be getting my shot as always!

I have another similarly ignorant question about the dentist, but I will post that in another thread.

[lhc11]

in reply to: antianxiety drugs #1064045

Hi Shirley,

No, no conference for me. And yes, I couldn’t remember which category Xanax is — it is indeed Category D, while the SSRI’s are in Category C.

Marta: you should indeed make your own healthcare decisions, but I wouldn’t discount your doctor’s opinion either.

Best,
lhc11

[lhc11]

in reply to: antianxiety drugs #1064042

Hi Shirley — my pleasure! I am a bit embarrassed to have gone on at such length, BUT also, I should have added one thing above: Xanax should generally be avoided when one is pregnant and/or suspects pregnancy or is trying to conceive, unless a doctor feels it is ABSOLUTELY necessary. It is believed to cause birth defects, and while some pregnant women are prescribed small doses of it, my understanding is that it is something that really should be avoided in that particular and crucial case if at all possible. The jury is still out on SSRI’s and pregnancy; right now the feeling in the medical community seems to be that while it may not be the best thing to take them during pregnancy, depression also puts a fetus at risk (in some cases even more risk) and that at least through the first two trimesters, someone who has been taking SSRI’s regularly should not necessarily stop taking them (something I did not know when I got pregnant and did stop, though I probably would have anyway even had I known this at the time). There’s a bit of a worry about the third trimester and the possible connection of SSRI’s to pulmonary problems in newborns.

This has not so much to do with Graves’ disease, except for the fact that so many women experience Graves’ after or during a pregnancy.

Man. I am on some kind of a lecturing roll. Must be my profession (I’m a professor, school has just started…and, well, you see the results).

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