Topic: Wilson's Temperature Syndrome-Has anyone treated hypothyroid/Hashimoto's w/ T3 only?
Rumigirl
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I am having trouble with Hashimoto's Disease, considered an autoimmune thyroid condition that creates a hypothyroid condition that sometimes alternates with hyperthyroid, as it attacks and destroys the thyroid.
I don't have a dr that can adequately treat this, and regular endo's would be inadequate. I also have numerous other endo issues that need to be addressed by a top-notch LL endo (or ideally LL).
I have a few possibilities. But I am interested in the Wilson's Temperature Syndrome treatment, which treats with T3 only, and often short-term, to get your temperature up to normal.
Has anyone here done it? If so, what is your experience? Who did you see? My temperature is still quite low, despite a high-ish dose of Nature-Throid.
Plus, right now I'm having horrible hyper symptoms, that may in part be coming from the hyper swing of Hashimoto's. Argghh! I've reduced the dosage, but need the help of someone really top-notch. Thank you.
Posts: 3792 | From around | Registered: Mar 2008
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I have Hashimotos. I was on only bio-identical T3 for three years. Then my dr. added a small amount of Levothyroxine.
My temperature never went up; in fact, it continued to drop. I am usually b/t 95.7 and 97.1.
Levo is generic Synthroid from a regular pharmacy. It is just T4. Honestly, I can't tell any difference w/the T4 added.
My thyroid levels still swing high and low from the Hashi's, so I have to adjust the bio-identical T3 every few months.
This has been my experience; I know it doesn't really directly answer your Wilson's temp question.
Posts: 331 | From West Coast | Registered: Jan 2012
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Rumigirl
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debilyn, thank you. So have you been able to manage the high and low swings? It's really tough! It takes me a while to figure out that it is the thyroid, when I get these high swings. Do you have a dr who is adequately helping you with it? Is it an endo?
So I assume that you get your bioidenitical T3 compounded? Do you have different strengths on hand for the swings? (Sorry for all the questions, just trying to figure out how to deal with it). Of course, I shouldn't be having to figure it out myself, I need to find a dr who can navigate this with me.
How much do you go up or down at a time? I was on 2 1/2 grains of Nature-Throid (like Armour) for a long time, but now it's too much. I went down 1/4 grain, but either it is still too much, or I have to give it time.
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Yes, the swings are tough. I don't know that I manage them that well.
My doctor who takes care of my thyroid and other hormonal issues is one who specializes in fibromyalgia, hormones, and fatigue. He also is ILADS informed.
He doesn't take insurance, but my insurance doesn't really cover the bio-identical hormones; yes, they are compounded.
I do have dif strengths, but I found that I can either skip a day or add extra on a day I'm feeling poorly from thyroid fluctuation.
If I am feeling palpitations and jittery like my thyroid is hyper, I skip a day of meds. That usually levels it out.
If I'm extra cold and sluggish, I take a double dose of T3. Right now I am on 75 mcg bio-identical T3, but I have been on as high as 200 mcg a day.
I haven't taken the Armour before, so I am not sure how it relates to the bio-identical.
The T3 compounded costs me about $30 a month.
I'm hoping as my lyme treatment progresses, my thyroid will settle down.
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Rumigirl
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Thank you, debilyn. I've got a road ahead of me to figure out who to see, and get help with this.
Have you done the no gluten thing, that is supposed to help Hashimoto's? I may have some sensitivity to it, according a test once. But when I've gone without for long periods of time, it didn't help in any way that was discernible.
Anyone else have experience with Hashimoto's and T3 only treatment (or not that particular treatment)?
Posts: 3792 | From around | Registered: Mar 2008
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I toyed with going gluten-free when I just "had" Hashi's, FM and Lupus. I worked it during the week but wasn't careful to stay away from gluten on the weekends.
Also, I ate much more sugar before my Lyme dx.
Now, I will say I'm 95% gluten free and 80-85% sugar free and dairy free. The sugar is the hardest for me to manage.
I come from a long line of sweet tooths. I didn't really notice much dif limiting these foods more severely when I started treatment in Feb.
But now when I eat gluten I get bloated and fatigued. I am still struggling with sweets. I just love them. I think these are lyme and co issues, not necessarily just thyroid.
The key for me was finding the right doctor to balance not just my thyroid but the other hormonal issues as well.
PM me if you want my doctor's info. I'm not sure where you are, but he has several offices in CA. Or they may be able to refer you to a like doc in your area.
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Rumigirl
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debilyn, one other thing: is T3 only the only treatment that you've had for your Hashimoto's? That is, did you ever have Armour or Nature-Throid? I'm just wondering how much of a difference that makes. I'm sure that it's all very individual, however. Thank you!
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If you are not 100% gluten free, it won't help your thyroid issue.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Rumigirl
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But what about if you've done it for a long period of time and noticed no difference?
Lymetoo, do you, also, have Hashimoto's? If so, what has your experience been? Sigh. I DON'T WANT yet another dr!! But clearly I need to find one.
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Rumigirl
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up.
Posts: 3792 | From around | Registered: Mar 2008
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You need to figure out what, if anything, triggers the swings, and get control of that. If you are on T3, and it is being absorbed, it should have a suppressive effect on TSH, and hence on your own T4 production. Thyroid issues are very tricky, more so if you have auto-antibodies.
Posts: 60 | From Maine | Registered: Jan 2012
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Rumigirl
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Yes, docluddite (love the name!), my auto-antibodies are really high right now. I'm on Nature-Throid (like Armour), so that is T3 & T4. My T3 has been quite high for a long time now. (I really need to find a good Endo for this---but it can't be a run-of-the-mill variety Endo.
I've reduced my dosage, and gone a day here and there without taking it, when I feel like I will jump out of my skin if I take anything more stimulating.
I think that it is caused by both ramping up on treatment after nearly a year off treatment, and esp using rifampin for Bart. I've never treated bart that much with abx (mainly rife in the past). Plus, the rifampin interferes with sooo many meds, including thyroid.
So suddenly I have been hyper beyond belief, feeling like "my finger is stuck in a socket." Sleep is terrible, my meds are screwed up, because rifampin interferes with so many of them. Plus, I'm probably going through a bad Bart die-off. Detox does help, but only so much, or only so long.
I'm also ramping up very slowly to a high dose on clindamycin (first time with this abx).
Plus, I've just been going through an unreal amount of stress from work, health insurance, and home-nurse/infusion co hassles that are beyond belief. So it is impossible to know how much of this is coming from what---it's all in the mix : - (
[ 06-26-2012, 05:28 AM: Message edited by: Rumigirl ]
Posts: 3792 | From around | Registered: Mar 2008
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The auto-antibodies complicate things because they may be stimulating by actually binding to certain receptors, or because they are destructive and are cutting out the negative feedback of endogenously produced hormone, resulting in more TSH production. It can be very complicated and may never be entirely figured out.
What is certain though is that high auto ab levels are ab-normal. Try to trace back to their first appearance, to see if there was a trigger other than Lyme or co-infections.
Something that helps lyme & co.s is heavy metal intoxication. common sources are dental amalgams, immunizations, cosmetics, high fish consumption, high consumption of industrially raised chickens, tattoo ink.
Another thing that screws with auto-immunity is vitamin D deficiency, but something that makes vitamin D deficiency hard to reverse is auto immunity and resultant hypermetabolic states.
Chicken-egg questions are hard to resolve, but you can't have one without the other.
Posts: 60 | From Maine | Registered: Jan 2012
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Also, in such a hyper state your detox systems are working double duty simply clearing the normal by products of metabolism, you may need help in this regard. Liver support!
Posts: 60 | From Maine | Registered: Jan 2012
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Rumigirl
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I was first dx'd with Hashimoto's around '91. I didn't understand the autoimmune part then, only knew that I was hypothryoid, and I was put on Armour Thyroid and Lugol's. After a couple of years or so, my auto-antibodies went away. And I went off the thyroid meds for a long time.
I don't also test positive for the auto-antibodies. But I do now! One other thing I just thought of that may be significant: I'm on IVIG!! Which supplies IgG antibodies from literally thousands of donors! I've been on IVIG on and off, mostly on, since Oct. '10. I'm on it for Chronic Demyelenating Polyneuropathy.
So that may be another big cause (maybe yes, maybe no). I don't think it's always been positive even on IVIG though, but not sure (I'd have to comb through past test results).
Yes, detox and liver support is essential for me, esp now.
Posts: 3792 | From around | Registered: Mar 2008
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Some thyroid focused practitioners recommend iodine supplements (Lugol's and Iodoral) for this and claim autoantibodies will go away as iodine repletion happens, others say no iodine, especially if hyper symptoms are present, as this could precipitate "thyroid storm", a severe hyper condition. The jury is out. Technically you are getting iodine as part of the thyroid hormones you are taking, but not in pure form.
I'd say your situation is very complicated, given the demyelelination. Are heavy metals a concern?
Posts: 60 | From Maine | Registered: Jan 2012
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