[WWWI2]

in reply to: Low Dose Naltrexone #1178592

when someone mentioned it to me initially I too thought how bizarre to think that an opioid antagonist would have anything to do with AI disease, let alone provide any positive impact. However, on further reading, there are legitimate studies being conducted on just that.

There is currently a pilot study to evaluate the safety and tolerability of low-dose Naltrexone therapy in children with moderate to severe Crohn’s disease was conducted at the Penn State College of Medicine.

And while these are preliminary studies, there has also been research on the use of LDN in treating fibromyalgia, hiv and autism.

I’m not suggesting it’s a cure, because I certainly don’t know. But I was just putting it out there because, for myself, I would rather consider something and reject it (or accept it) than not know about it in the first place.

[WWWI2]

in reply to: Thyroid Supplement: Bioidentical hormones #1178533

Raristy, why exactly are you looking for something different? What are the issues that are causing you to seek something else?

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[WWWI2]

in reply to: Just added T3 to my block and replace regimine and it’s helping. #1178219

Actually that’s what my doctor said as well. However since the block and replace technically makes me hypothyroid by blocking the thyroid hormones and while controversial (I’m still not sure why), adding T3 can be used in the treatment of hypothyroidism it kinda makes sense. All I know is if they ultimately have to take my thyroid out, for the first time since getting sick, I actually think I might be ok. I have a sense of wellbeing that I have not had in a very long time. Now if only my hair would stop falling out it would be all good

[WWWI2]

in reply to: Auto immune trigger – questions #1178041

I was diagnosed with my first AI in 2008. I have no solid proof, but the medication I was taking at the time has been implicated in several studies as the trigger. I have no real AI disease’s in my family tree. They also say that once you have an AI you have a predisposition to more. 2010 I was diagnosed with Celiac and this past August (2012) Graves’. So I would hypothosize that the increase in AI diagnosis has a connection to environmental factors (meds, foods, toxins) for some of us. But it’s just a theory…

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[WWWI2]

in reply to: Hair loss and doctor’s response #1177679

ChristinaDe,

Thank you so much for taking the time to respond so thoroughly, honestly and eloquently! You have not only given me hope that this mess can be righted, at least more so than it is now and I feel validated.

I was not aware of the “thyroid crash” and I appreciated being able to anticipate that.

I hope in the future you would be ok if I picked your brain. And I’m going to ask in advance that you forgive me if I repeat the very same questions at a later date lol.

Thank you, again, so much for responding as you did

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[WWWI2]

in reply to: Hair loss and doctor’s response #1177677

Kimberly – I think I will pursue your suggestions. I had thought that if I went to another endo I had to drop this one, but you are correct, there is nothing wrong with simply getting a 2nd (or rather 3rd) opinion. I can always jump ship later lol. Thanks for the support and suggestion and especially the validation.

ChristinaDe – Thank you for that explanation. That makes a lot of sense as to leveling out. I JUST got my levels into the normal range about 3 weeks ago. I was put on Meth in August when I was finally diagnosed, bypassed the normal ranges and went into hypo territory for 3 months. So it would seem to me that I’m awfully early in the normal territory to gauge whether things can stablize or not. And despite the small chance of remission, I’m certainly going to shoot for that. It just felt as if his reasoning for “alternatives” was based on the inconvenience to him since I’ve only been within normal ranges for such a short time.

I appreciate knowing that your experience mirrored mine. Not excited that I may be moving on to Endo #3, but that it confirms that I’m not wrong to suspect that this may not be a good fit for me either. And that my concerns are valid ones.

If you have a surgeon that would indicate that you went through TT. How was that for you? How are you feeling now? How recently did you go through it? Why did you choose that method? I’ve probably asked you these same questions before, but the cog fog is thick right now lol. I’m leaning towards TT if that’s where this goes so am very interested to know all! How long until you were functional? did you need a lot of support during the early days after your surgery? Inquiring minds want to know

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[WWWI2]

in reply to: Hair loss and doctor’s response #1177674

I also had serious nail issues about 1.5 years ago that I now attribute to Graves’. They have since gone away. My hair changes follow my illness changes pretty closely.

But it’s his “sureness” and kindly patronizing attitude that make me question myself. HE is supposed to be the expert, not me. I’ve done all kinds of research and yet I feel constantly dismissed and invalidated.

He’s my 2nd endo since August. I have my concerns that if I do pursue a third, that it’s not going to be any better. And yet, despite that he’s been practicing for many, many years and in some ways seems to know a lot, in others it appears he knows very little.

But either way, he’s SO sure he knows what’s right for me and yet he comes up with things that go against general knowledge. He told me it didn’t matter when I took the methimazol and levothyroxine during the day and it didn’t matter if I ate food or didn’t. Conventional endo journals do not say that.

But he also put me on a block and replace regimine that seems to be if not totally cutting edge, still fairly forward.

Then at this last meeting, when I told him I still didn’t feel well, he told me that if things didn’t right themselves with my symptoms, then it was time to consider alternatives. The alternatives being RAI (which he’s for and I’m not so sure) or TT (which he’s opposed to but I’m not). I responded by saying if we can’t get the meds stable now, what gives me any assurance that they will be stable when my thyroid is gone. He said, well you don’t seem to be in a place to let me “teach” you about this so perhaps we’ll have this conversation at another time.

I’m scared and angry and confused. I know better than to trust anyone blindly. But to some degree I have to have faith that someone more knowledgable knows what they are doing. I just don’t know what to do!!

[WWWI2]

in reply to: Significant hair loss #1177337

Thank you all for your replies and support. I’m not as distressed as when I initially posted.

Angry hair (Apparently mine is furious lol). But that’s helpful to know. I think I was expecting as soon as I hit normal levels, this would resolve and not continue. That apparently was unrealistic. But it explains why I’m continuing to lose hair and perhaps means it’s not a permanent condition.

You do give me hope that since I don’t have bald spots, just pretty much thinning everywhere, now that the levels are somewhat normal, there is a chance whatever hair decides to remain will be sufficient until, it starts growing back.

I’ll definitly check out biotin.

Thanks!!

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[WWWI2]

in reply to: Significant hair loss #1177334

On the warnings of all of these drugs, hair loss is included as well as being a symptom of Graves so at this point I can’t rule anything out. Although knowing it’s less common helps a lot. I’m glad to hear that for the majority it does grow back.

Heard from my Endo’s nurse. Her first comment to me was “It’s possible that you’ve just suddenly developed female pattern baldness, perhaps it’s in your family?”. Then she said, while they can test me for vitamen deficiencies, perhaps my best bet is to go see a dermatologist, since this is not really in their pervue.

When I suggested that perhaps it could be related to the fact that my thyroid hormones have been going nuts for a significant amount of time and I’m now on a plethra of medications, and perhaps it SHOULD be in their pervue she told me if I wanted to change out my meds for alternatives to see if that might make a difference, I (me?!?) just have to let her know which ones.

I had made the silly assumption that before she called me back, she may have discussed this with the doctor. However, as she ended the call she told me to make sure that at my appointment next week I should mention it to the doctor. So apparently she didn’t feel it necessary to discuss this with the doctor before telling me it was probably just a coincidental emergance of female pattern baldness.

So far there has been NOTHING about getting Graves’ that has been simple.

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[WWWI2]

in reply to: RAI Concerns #1177321

Kimberly,

Sorry about posting a press release. I didn’t check thoroughly enough apparently. But thank you for posting the actual study.

I realize this is not the only disease out there but since it’s one that I have, it frustrates me that the methods of treatment are still so crude. Destroying a thyroid, which is not the source of the disease, since they apparently don’t know what the cause is, seems just wrong.

I think in the phases of grief, I’m in the anger one at the moment. I’m going to have to make a decision, all of which contain risk, for something I don’t want to happen. I realize in life there are lots of these choices, but that doesn’t mean I have to like it.

Thanks for letting me vent.

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[WWWI2]

in reply to: Levels within normal range, but I’m not #1177048

Kimberly, I’m trying to have more patience and wait this out but some days… Thank you for the resources and suggestions. After the last few years I’m a little nervous about going to the doctor to check things out as each time I do I come away with additional diagnosis, Graves’ being the most recent. But you are right and better to know than not.

Cat – That brings up a question. If there is a problem feeling well in normal levels pre TT or RAI, how does one have confidence they can get them to a “good” place post? I do understand why getting it over could be appealing but I too am hoping to be in that 10-20 %. What fun this all is lol Sending you good thoughts on feeling well soon

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[WWWI2]

in reply to: 6 days post TT- menstruation/pregnancy question #1177061

Not to be glib, but you may want to tell your neighbor that your ovaries and uterus are NOT in your neck.

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[WWWI2]

in reply to: Unsure about response from Endo re: Eye problems #1176628

catstuart7 wrote:

WWWI2 wrote:

I just feel like I don’t have the capacity to deal with this right now. This is my 3rd disease diagnosis in 4 years (not counting the ruptured appendix in July) I’m scared, I’m exhausted and I’m running out of organs.

HUGS to you! While I’m not running out of organs I can relate to feeling like it’s all too much. Like the level of smartness and assertiveness required of me to avoid the pitfalls may just be too much given how I feel most of the time. Still it sounds like you are doing an awesome job learning about GD and exploring your options, I don’t think you’ll get railroaded and I won’t be either. Stay strong sister!

I could not have put that better myself CatS (I literally could not have). Of the many things I have lost over the last few years, I miss my brain the most

Thank you for your confidence and I believe (and hope) you are right

Thank you my fellow She-warrior !

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[WWWI2]

in reply to: Unsure about response from Endo re: Eye problems #1176626

Kimberly,

That was very helpful. Thank you. I believe I read it when I was first diagnosed but I understood even less then I understand now. so again, thank you.

It appears that my TSH should be in the normal range and a there is a secondary TRAb test prior to attempting remission :

“Measurement of TRAb levels prior to stopping antithyroid drug therapy is suggested, as it aids in predicting which patients can be weaned from the medication, with normal levels indicating greater chance for remission”

This is really good to know. They also, as you said, suggest 12-18 month trial with ATDs, along with the test results as mentioned above at a year (or 18 mo), try for remission, potentially for a year. If that doesn’t work, there is no reason not to try another 12-18 month trial of ATDs, if that’s what I so choose.

And while I couldn’t find any percentages about GO (Graves’ Opthamopathy) starting or not starting AFTER Graves’ has been diagnosed, I’m going with ya’ll on this one.

Despite that he told me it didn’t matter when I took the meds, I’m following what I’ve read ON THE BOTTLE.

It also said it’s essential to get the levels stable as quickly as possible and while I don’t exactly fault him entirely for letting me hang in the wind for so long, I do think I am less of a priority than I should be. If he can get me stable, I’ll stay with him. If not I’ll find another, but that requires lots of waiting until there’s an opening, new tests, waiting for lab results, waiting for the meds to kick in so hopefully stability is somewhere soon in my future.

I have asked him how much flexibility he has with this “1 year clock” and he says he could “spontaneously” give me an additional month or two. So I think that means if (and when) I’m not ready for “the final solution” I will move on then.

But I do feel calmer and more informed. Thank you

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[WWWI2]

in reply to: Unsure about response from Endo re: Eye problems #1176624

I am not one to trust a doctor blindly. I’ve had my share of misdiagnosis and severe consequences as a result, including losing my gallbladder for no particularly good reason.

That said, this site being an amazing resource, I have to trust, at least to some degree, a doctor. This is my second one (and most likely not my last). He has been practicing for many years, comes highly recommended (although more for his years of experience as an Endo, not specifically Graves’) and when I asked him his experience with Graves’ he told me of his many, many years working with Thyroid Cancer patients ( tho I’m still not sure what the connection to Graves’ is).

The things I find concerning are that he has told me not to worry about when I take the levothyroxine and methamizol (night or day, empty stomach or not), that it’s not possible to get TED, specifically Graves’ Opthamopothy if I don’t already have it. Additionally, when he discussed my options (ATD’s, surgery, RAI) he presented surgery as nothing but risk and RAI as the real only way to go.

And probably the thing that is concerning to me most is that he has given me a year to go into remission. I was diagnosed in August and in November, my TSH hit normal range on one test (it has now gone south deep into hypothyroid land). That is when he “started the clock” on my one year. I have yet to be stable and my clock has started (no pressure there). The more I read the more it seems that it has more to do with TSI ranges in order to determine when to wean of the meds to see if remission is possible. Not some arbitrary TSH test. But I could be wrong.

He seems to be receptive (sort of) to my input, but seems to have my path already determined. If he’s right, I’m good with that. Perhaps he just knows more than I do and has years of vast experience. But, I’m really scared I’m going to get railroaded into something because either I don’t know enough to stop it or he “knows what’s best for me”. It seems when he talks to me, he’s given this same discussion to many other people over and over. And while he ‘seems’ receptive, I am not entirely sure he’s hearing me.

My gut says to hold on until decisions have to be made, hope he can get me stable by then and then when the clock strikes the time to make a decision…RUNNNNN

I just feel like I don’t have the capacity to deal with this right now. This is my 3rd disease diagnosis in 4 years (not counting the ruptured appendix in July) I’m scared, I’m exhausted and I’m running out of organs.

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