[WWWI2]

in reply to: Eyes not bulging but eye problems nonetheless #1175903

This opthomologist did dilution and letter tests as well. But I had a nagging suspicion that there should be more diagnostic criteria in regards to the relationship with Graves’ related eye issues then simply lid retraction/bulging or by his measure, the “whites of my eyes”. You have confirmed those feelings.

Although I understand that you can provide no absolute reassurance that TED is not in my future, it is really helpful to know that eye stuff, not always resulting in TED, is not uncommon. (that’s a lot of double negatives, sorry)

Thanks all!

[WWWI2]

in reply to: Eyes not bulging but eye problems nonetheless #1175902

This opthomologist did dilution and letter tests as well. But I had a nagging suspicion that there should be more diagnostic criteria in regards to the relationship with Graves’ related eye issues then simply lid retraction/bulging or by his measure, the “whites of my eyes”. You have confirmed those feelings.

Although I understand that you can provide no absolute reassurance that TED is not in my future, it is really helpful to know that eye stuff, not always resulting in TED, is not uncommon. (that’s a lot of double negatives, sorry)

Thanks all!

[WWWI2]

in reply to: Graves’ and anxiety. husband making me sick? #1175715

I just wanted to add I was put on atenolol 25 mg 1 x a day, about 6 months before I learned that I had Graves’. I was experiencing tachycardia and the like. It was upped to 25 mg 2x a day and it has made a big difference. I believe the half life is about 6 hours, which means by 12 hours or so it’s pretty much out of your system. So if it is being effective, it’s only effective for half a day. Like I said, once I was put on two seperate doses a day, it made a lot of difference.

[WWWI2]

in reply to: Feeling unwell and a little scared it will remain this way #1175577

My take from what you’ve said is that this may be another “long haul” thing, Cat. I have another seperate condition that emulates some of the Grave’s symptoms so tracking can be a little complicated, but I think that’s a very wise suggestion Kimberly.

Thank you for taking the time to respond.

WWWI2

[WWWI2]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175424

Kimberly,

From what I’ve read, you are absolutely correct. I can’t find the link but it was suggested that in Japan it was a very, very strict protocol that went on over a period of years with very thorough and detailed methods that required constant tracking of the patient and levels to a very minute degree. It was suggested that here they may not have been adhered to as strictly and therefore unreplicable…or it’s related to sushi somehow maybe lol I don’t know

It may not increase my chance at remission, I don’t know, but if at the very least, it can make things more reasonable for me, then I’m content with that.

Actually now thinking about it, there is a condition associated with Grave’s, Thyrotoxic periodic paralysis, that strikes primarily men and of Asian decent. I won’t post the link cause it’s a WIKI but it talks about a gene mutation et al, so there may actually be more to what you are saying about Japan?

WWWI2

[WWWI2]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175421

WWWI2 wrote:

catstuart7 wrote:

WWW12, I’ve heard of what you are doing as called “add back” therapy as opposed to block and replace. Adding back…some thyroid hormone.

Catstuart,

That’s very helpful to know and gives me more ideas for my google searches. Thanks!

WWWI2

Excellent stuff Catstuart!

Found this http://www.nejm.org/doi/full/10.1056/NEJM199104043241403

Administration of Thyroxine in Treated Graves’ Disease — Effects on the Level of Antibodies to Thyroid-Stimulating Hormone Receptors and on the Risk of Recurrence of Hyperthyroidism….

I can’t substantiate the following and still trying to wrap my cog fogged brain around it but found this:

“Re: “Add Back” Thyroxine therapy improves rate of remission

If you understand what we think causes the TRab antibodies to be attracted to the TSH-Receptors, you can then see why Synthroid could indeed ward off the
return of TRab antibodies.

What we know: TSH binds to TSH-Receptors and stimulates them. During this usage, particles of these TSH-receptors can be “shed” and there is some evidence that
the shedding of these particles are what is often mistaken as “foreign” — and gets the TRab going.

So, by taking synthroid, you are reducing the activity on those TSH-Receptors (by keeping TSH activity to the low end) – which no doubt, slows down shedding
of TSHR particles too. And if you reduce the activity to those antigens, you are less likely to see an antibody reaction.

[WWWI2]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175420

Smashley1274 wrote:

I also had a doctor in cny try this. And I did do what he had requested. Also I approved the rai and now am 20 lbs heavier, tired all the time, headaches, depressed, my palpitations are back, my night sweats, itching, bruising its all horrible and I am on a new endo and my levels are normal. It’s been almost two years since the rai and they’ve sent me to a gastro had an endoscope polyp removed and still with all the side effects and feelings they say I am fine and my levels are normal…wish I could have started again this sucks so def get as many opinions as you can…

How did it go when you tried this? So you then went forward and had the RAI? Did you ever stabalize prior? For what it’s worth in the last month I have gained 10 lbs, which I am so not happy with. Do you think the RAI is responsible for how you feel? Have you talked with your doctor about levels, even when normal, may not be optimal for you? From what little I know, it sounds like your levels while normal, might be at either the higher or lower end. Will your doctor work with you?

[WWWI2]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175419

catstuart7 wrote:

WWW12, I’ve heard of what you are doing as called “add back” therapy as opposed to block and replace. Adding back…some thyroid hormone.

Catstuart,

That’s very helpful to know and gives me more ideas for my google searches. Thanks!

WWWI2

[WWWI2]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175418

Since the August diagnosis, I went from severely hyper, to almost normal, back to hyper and now with a low t4, hypo, with occasional good days in between, because of the dosing strategy of a doctor I now believe knows little about treating Graves.

This morning I took the first levo…. and while I have minor tinnitus (which could be related to something else), and despite the fact that the doctor I saw yesterday said it will take up to 6-8 weeks for the levo to become fully effective, I have noticed some differences. Mainly, I’m getting glimpses of clarity, from the heavy cog fog I have been in for a while. My eyes are no longer red and oh so tired looking. They still look tired, but shine is returning.

I still don’t feel well, but it kind of feels like I got a small burst of something. Not sure what but I feel like there is possibility and hope. Part of it may be the placebo effect of having found a doctor who appears to grasp the intracacies of what my body is going thru, but I am thinking it’s more then that. It’s minor improvement and a lot remains to be seen, but my vision and my brain are noticably clearer.

I don’t want to offer false hope as this could just be some trick for all I know, but if this is an indication of what’s to come, I’m really good with this.

WWWI2

[WWWI2]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175414

I wish I could answer that question, but considering I initiated this post with questions, I’m probably not the best source lol. But for me, to be absolutely candid, I was really traumatised by the previous drop (20 mg to 10 mg) and duration and level of pain and feeling of being out of control and totally abandoned when I needed help, by my previous doctor, that for me, good reasoning or not, if I can avoid another drop of the methimazol in the near future and instead gently “tweek” my levels as needed, that works for me. I’m sure this is not my doctors reasoning, but for me I’m good with this. Only time will tell if this is truly effective.

[WWWI2]

in reply to: T4 OK, but T3 Not behaving #1175403

Bobbi,

It’s amazing how much I learn here! That helps me understand the difference really well

Thankyou!

WWWI

[WWWI2]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175412

Vanillasky, thank you for helping me get a better understanding of what this was about. I’m already down to 15 mg Methimazol and while I don’t remember the dosage of the Levo, it seems much lower than what you were given. From both doctors I’ve heard that methimazol is sometimes hard to stabalize on because the dose is in 5 mg increments which does not allow for much fine tuning. I hope whatever treatement you are receiving, is working for you

Kimberly

That is HUGELY helpful. Thank you! It actually makes a lot of sense to me. This doctor wants to be gentle with the increases and decreases as opposed to my other doctor who I’m guessing now just didn’t know what he was doing and as a result I ended up in a a world of hurt unnecessarily. It’s nice to know that there is a way to adjust and fine tune this.

It may or may not work, but it was not an option that I was really aware of prior to today. It makes me feel that at least this doctor is knowledgable about grave’s as he claims, keeps up with what’s going on. Your answers have made me feel more confidence with this doctor, something I never had with the last one, a gut feeling that I should have trusted.

For the first time since this whole thing started, I feel like if it is possible for me to stabalize this is my best shot. He does go on to say that there are some who just never do and then RAI or surgery may need to be considered. But I’m not doing the cart and horse thing just yet, at least not today.

Thanks SO much.

WWWI2

[WWWI2]

in reply to: T4 OK, but T3 Not behaving #1175401

I should probably add that as of last week, my T3 (apparently total t3) is within normal range (although it sounds like that may not be good information since it’s not free t3) and my t4 is low.

[WWWI2]

in reply to: T4 OK, but T3 Not behaving #1175400

Today I met with a new endo. Unlike the first one, the first question I asked was “Have you ever successfully treated someone with Grave’s?” Bottom line is he has treated many, over many many years in practice. So whether he’s any good I don’t know but he’s certainly ahead of the last one.

It also turns out that the previous doctor was testing my total T3 and not my free T3 which he explained gives a squewed picture of what’s really going on. Not sure what that means but going to google to find out. This doctor didn’t seem concerned that the t4 and t3 are out of whack.

Kind of an interesting twist tho.. He’s going to keep me at 15 mg Methimazol but he’s adding .02 mc? mg? of Levothroid to the mix. Something about Methimazol bringing my levels down and with managing levels is like trying to move a mountain and therefore controlling the levels by using levothroid to help regulate things. I’m not sure if this is what they mean by the block and replace method or not. Gonna google that too.

Not sure how the above will work, but considering I have been absolutely terrified that he was going to once again drop the Methimazol, considering how incredibly badly it was handled by my previous doctor (Dropped from 20 mg to 10 mg and when I called to tell him that I’d gone hyper again and was in horrible pain, the levels were confirmed by the tests, he told me he never told me to go to 10 (liar – Like I’d drop to 10 all on my own), to go up to 15 mg and since I wasn’t seeing him for another 6 weeks, to go see my Primary care doc if I was having any problems, which I was) I’m glad I dont’ have to drop again. I’m almost phobic about it at the moment.

So anyone ever heard of adding levothroid to the mix?

[WWWI2]

in reply to: RAI and cancer risk #1175321

What I still don’t understand is why doctors in the US appear to significantly prefer RAI over surgery and why in most other parts of the world doctors significantly prefer surgery over RAI.

There seems to be a bias, but in both directions. Why? Cost? Effectiveness? Risk? Ease of use?

Anyone?

[Author]

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