[WWWI2]

in reply to: Armour #1180263

Thanks for responding and for the link. Just to elaborate, I was put on block and replace (Meth, T4 and T3) by my previous endo. That has been stopped by this endo and I think it was reasonable. However, until the T3 was added late in the game, I felt pretty miserable on just Meth and T4 and I responded well to the addition of T3. This could be that something was off with the block and replace dosages, but in my mind this suggests that perhaps I’m one of those who don’t convert T4 to T3 well.

My new endo took me off all drugs to get a new baseline a few weeks ago since she didn’t agree with endo #2 protocol. We are also attempting to see if I’m in remission since I’ve been on Meth for 11 months.

My fear is that ultimately I will required either RAI or TT and since she doesn’t believe in T3’s benefit or need, I will either have to agree to her protocol or find yet another endo.

I’m with you all on all endos being on the same page….

[WWWI2]

in reply to: Hair loss and muscle cramping/spasms #1179007

Kimberly,

Thank you for the post. It was very helpful.

WWWI

[WWWI2]

in reply to: Hair loss and muscle cramping/spasms #1179004

Talley – Why is it so hard to find a good endo? That’s a VERY good question. Why do they know so little about Graves is my question. Had an interesting turn of events, sort of lol. Since the insert on the medication said that “Hair loss can occur the first few months of taking this medication. If it persists ask your doctor or pharmacist.

So since I had already asked my doctor and he was a boob-head, I went and talked with the pharmacist. Sadly he was also unaware that Levothyroxine can do this. However, as he was reading the insert he paused and explained to me that he was hypothyroid and had been on Levothyroxine for a long time. When he first started on this med, he too started to lose his hair, and apparently until I brought this in he had never understood why and that it made all kinds of sense.

He seemed to understand and have empathy for my plight in that this is a drug I have to take, for the rest of my life. The nice and helpful thing was that he said that I will most likely not lose all of my hair and that my body will adjust in time. That was the most hope I’ve gotten from any professional out there. It would have been SO easy for my endo to have said that instead of saying 1. He didn’t know what was causing it but 2. This definitely was not related to my thyroid or thyroid meds. That still makes me very angry.

The hard part of leaving him is always the second guessing, considering he DID go to medical school and he is supposed to be the expert. My brain has trouble getting around the idea that someone with such a good reputation and who has practiced for 30 years, could know less than silly little me lol. but it’s a leap of faith to go elsewhere and i’m taking it.

Vanillasky – For what it’s worth, I was on Ativan for over 10 years so I absolutely understand your perspective. If and when you decide that you no longer want to take it, it has to be entirely your decision and on your time frame. You have a WHOLE lot going on right now and this isn’t the time to worry about it. Part of it is that I’m very sensative and frustrated by the consequenses of the drug for me and so whenever I see someone else on the drug, I respond very strongly. The only thing you should focus on right now is getting as healthy as you can and feeling better. My heart goes out to you right now with so much going on in your life. Just take care of you k?

WWWI

[WWWI2]

in reply to: Hair loss and muscle cramping/spasms #1179001

Gabe – I have questioned the medications and what they could be contributing too. I also think how increadibly crude it is in the last 50 years the only way still to treat Graves’ is kill or remove the thyroid, which cures nothing really.

Vanillasky – I am not a proponent of benzodiazepines (Ativan, valium, Klonopin) for longer than 2-4 weeks. It is highly addiction. Iwas put on Ativan (a sister to Klonopin) for over ten years and have been spending the last two years trying to withdraw from it. For me the experience has been equivilant to that of Graves’. I am telling you this not to scare you but to consider looking into alternatives if at all possible. Doctors can get you on, but rarely are they helpful in getting you off the drug. If you want ANY information or support with dealing with withdrawal when and if you decide that’s what you want, I can offer you many online resources. Ask anytime…

As far as menopause, I’m doing something I believe is somewhat risky. I’ve been on continuous birth control since 2008 as a result of severe PMDD. It has stopped my cycle completely and my intention is to continue to take it until I have finished the benzo withdrawal, gotten the Graves’ resolved as best I can and perhaps try and ride it through some portions of menopause. I’ve been sick since 2008 with the first of 3 AI disease and at the moment the idea of dealing with menopause on top of Graves’, benzo withdrawal and lymphocytic colitis is more than I can handle.

WWWI

[WWWI2]

in reply to: Hair loss and muscle cramping/spasms #1178998

I will be 50 in October and I am NOT ready for menopause now. I have too many other things to contend with at the moment. I REFUSE to have menopause now. lol

[WWWI2]

in reply to: Hair loss and muscle cramping/spasms #1178994

Hiya Vanillasky

Kmart HA!

When I didn’t know what was causing it, I was scared to try anything. Now that I know what’s causing this I will probably pursue Rogaine. Thanks for the suggestion Im so sorry you are going through this as well.

There are few things worse than being in significant distress, having to trust someone in authority to help you, have them tell you that not only are they right but you are wrong, only to find out they were wrong and you were right all along…

WWWI

[WWWI2]

in reply to: Question on Cytomel dose added to levo #1178870

Mombert,

I am absolutely not a doctor but from what i’m reading it has been suggested that a 4 to 1 ratio appears to be within reason.

Keep in mind that Liothyronine (cytomel) is four times more potent than levothyroxine. Levothyroxine 100 mcg daily would be equal to 25 mcg of liothyronine.

To add liothyronine to levothyroxine, the dose of levothyroxine may need to be lowered first. Someone taking levothyroxine 100 mcg daily might be changed to levothyroxine 75 mcg with liothyronine 5 mcg daily. This would be roughly the same as 95 mcg of levothyroxine, not exactly the same dose but a close approximation.

Please check this out on your own as I am not prescribing nor suggesting just offering one gauge to compare too. But based on this, 25 mcg does appear to be significantly higher than elsewhere I’ve seen. Additionally, it doesn’t appear your doctor is having you lower the levothyroxine either which I would certainly investigate as well.

I am only going based on what my doctor did and upon the addition of 5 mcg of lothyronine he lowered my levothyroxine from 100 to 75 mcg.

Cytomel addition may or may not be what helps you to feel better, but for me it has made all of the difference. I had been a human yo-yo for a while, but even when they got my levels in the optimal place, I felt no better than I had when I was hypo from too much Methimazol. Within a day or so of being on the Cytomel, color came back, my body started to respond in all kinds of ways and it has continued to. I hope you find the resolution for you, whatever it turns out to be. Good luck

npatterson – As one who does not convert T4 to T3 correctly I have to say that your response appears to be as a result of clearly never needing T3.

And I think it is unkind and in fact condesending to say “Please don’t become a walking, talking campaigner for T3. It is great for some folks, but is not a harmless, feel-good pill.” You are dismissing and minimizing a whole segment of people. We don’t have the support of the AACE or the ATA and I think it is extremely unhelpful to treat those who have benefited from the use of T3, lowering depression and significantly improving quality of life as simply “Rah Rah cheerleaders”. Unless you genuinly understand the impact for those of us in this group, between T4 alone and t3 with T4, please don’t speak as if you are an authority.

Additionally whether it’s 10% or 40% of us that deal with it, if you are in this group, it doesn’t matter what the percentage is.

http://www.eje-online.org/content/161/6/955.full In this study 49% of the patients preferred the combination treatment, and only 15% preferred levothyroxine-only treatment. I don’t know about you but that’s NOT a small percentage

Kimberly,

I didn’t see your post before I posted mine. Sorry for any redundancy.

WWWI

[WWWI2]

in reply to: My Thyroid is Talking but My doctor isn’t listening (Communication Difficulties) Please Share your stories!! #1178707

Why does the phrase “That is not thyroid related” flow so easily off the tounges of Endochronologists?

When my methimazol dose was dropped too low and during subsequent raising and lowering of the meds, each and every time, and NO other time, my body begins to ache and my lower back spasms enough to keep me in tears for days and yet “That is not thyroid related” and there is nothing they can do for me.

When I was hyper, my hair changed it’s texture and what was straight became wavy. As soon as I went hypo and was put on Levothyroxine, my hair began to shed rapidly. I was informed I probably had a sudden occurance of female pattern baldness because “that is not thyroid related” and there is nothing they can do for me.

I can’t decide whether they are lazy or simply ignorant….

WWWI

[WWWI2]

in reply to: T4 to T3 conversion #1178650

No hijacking here..I’m thrilled by the input!

Thank you for posting the study!

I too believe nutrition is, for me anyway, key. I’m at the tail end of a (very long) process of withdrawing off of a drug that I became Iatrogenically dependant on. As a result, my CNS is compromised and I respond badly to many suppliments and in line with a compromised CNS, I’ve read that large infusions of cortisol (as a result of this withdrawal) can also compromise coversion of T3. I should be off this medication within a few months and am expecting? hoping? that the conversion will improve. Either way I now know that T3 is a very viable option for me.

So basically I’m dependant on food to be my medicine, but I’ve now come to believe that unless it is clear there is a deficit, supplimentation at best becomes very expensive pee and at worst can alter, as you Harpy mentioned, the balance of things. So food it is

I will look further into the link you provided. Thank you again Harpy!

WWWI

[WWWI2]

in reply to: T4 to T3 conversion #1178640

Kimberly – I’m so glad to hear that things are progressing with the realization of T3’s importance. I can only go by my experience and say the difference has been remarkable and dramatic for me. It scares me sometimes that had I not asked for T3, that I would have gone on feeling as poorly as I did as well for many out there without this info or that option.

Harpy – That’s extremely helpful and makes a lot of sense. So to clarify, you are saying it may be possible to see the conversion issues if perhaps my rT3 is also fairly high? In googling rT3, I’m reading that if the rT3 is too high, which from what I’m reading from you may counterbalance a normal range T3, there are many symptoms, which, among others, but most significantly to me, has been hairloss. So there is hope for me yet This is getting good!!! Thank you!!

WWWI

[WWWI2]

in reply to: T4 to T3 conversion #1178637

Kimberly,

Thank you for responding. That’s what’s so perplexing, both my t4 and t3 were inline with each other and at the higher end of the normal range.

I wonder if perhaps no effective testing method has been identified or developed to date which may explain why T3 is not typically considered as part of the American standard of care?

WWWI

[WWWI2]

in reply to: Low Dose Naltrexone #1178602

Thank you Harpy

[WWWI2]

in reply to: Low Dose Naltrexone #1178600

snelsen,

Thank you for the link. And even tho I have Graves, once on the methimazol I went hypo and got stuck there for a few months, which is why I’m on endo #2. With Graves’ my hair texture changed, it was when I went hypo that it started falling out. But yes there are other causes. It just seem awfully coincidental that as my Endo’s nurse suggested, I acquired a sudden case of female pattern baldness.

And while I think he’s not a bad endo, and pretty smart I’ve come to believe not everything he has said is gold. For example, he said, if I don’t have TED by now, it won’t happen. He also said, the extreme muscle pain I have everytime my meds are adjusted has nothing to do with my thyroid or the meds and then the hair thing.

On the flip side he’s willing to do block and replace with the addition of T3 which has allowed me for the first time since before my diagnosis, to feel almost human. So he’s willing to work with me. I have begun to lose faith that there are Endos who actually know anything about Graves’ specifically so I am hesitant to look for another and end up in the same place.

Thanks for taking the time to check my med out and to respond

WWWI

[WWWI2]

in reply to: Low Dose Naltrexone #1178597

snelsen,

I really do hear what you are saying and am so sorry that you are suffereing the consequenses that you are. We are so often told things are safe when they are not and only after the fact learn the price we have to pay. It’s horrible what you are having to deal with.

Although not as dire, I was on an anticonvulsant (for a misdiagnosis) that has been implicated as a causitive agent for another AI disease that I have acquired. So when you talk about being hesitant about drugs, even those that are tested thoroughly and have been used for years, I’m exceedingly hesitant.

Currently my hair is falling out at an excellerated pace. My Endo said it could not be thyroid related (I am not convinced however). So he has offered me a drug Spironolactone that is supposed to help. He says there are NO side effects (all drugs have s/x).

I don’t want to end up with no hair and yet, everyday I stare at that bottle terribly afraid of it not taking the drug and watching my hair progressively thin out.

So I’m right there with you about drugs. And yet, the hope that there would be something that could, in theory, allow me not to have to kill my thyroid, does stir my interest.

WWWI

[WWWI2]

in reply to: Thyroid Supplement: Bioidentical hormones #1178538

I have not tried Armour, but after 8 months of treatment with t4, two weeks ago my Endo added T3 and the difference really has been remarkable. I’m on block and replace which means they have fundimentally shut down my thyroid and are treating as if it were hypothyroid, with T4.

I too was exhibiting very similar symptoms of hypoT as it appears your daughter is, depite the fact that my levels appeared normal as of a little over a month ago. After the T3 addition, fairly quickly I began to feel as close to normal as I have in probably 2 years. Hopefully adjusting the T4 and T3 as Kimberly suggested will provide your daughter with some relief.

WWWI

[Author]

Posts