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Old 05-10-2006, 06:55 PM   #1
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One Week Later

Hi everybody. It has been seven days of being dx and treated for Hashi's. Levoxly or something like that. The third and fourth day I felt sooo much better. I didn't have to shuffle so bad when I walk ect. The n last night the mucles started twitching again, (maybe that never stopped) but just feeling in general flu like. Aching, foginess you guys know the drill. I thought I was supposed to keep getting better everyday.
Maybe I do have fibro as well as Hashi's.
Does anyone with Hashi's have zapping pains in pelvic region? Just had a pap so I think I am good there. Just the all over hurting. And sooooo tired.
Plus Brandon, my kindergartener, is sick with a high fever. Of course didn't know this until after his class today. I volunteer in his class on Wed's.
Thank you again for any input.
Deena

 
Old 05-11-2006, 05:19 AM   #2
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Re: One Week Later

I have Hashimoto's (found out in Sept.) and have not yet felt much better. I am on my 9th bad cold since December. I know it can take a LONG time to feel better. Mary Shoman (thyroid advocate) says that if you were hypo for a long time it will probably take a long time to repair your body. I dont know if I've found the right medicine yet, and I'm going to ask my endo to test FT4, FT3, and reverse T3, because the TSH # alone won't tell you everything (if you convert T4 to T3 well, etc.). My RE had me on .100mg Synthroid for 2 wks in Sept. and I went hyper to .01 TSH. Then he had me on .075mg for 2 wks and I was still hyper @ .03. Then he had me on .05mg for 2 wks and I was still hyper @ .03 again. I never felt any better during this time and was having a lot more dizziness and nausea, and I was blacking out whenever I stood up or crouched down. I also had a really red face and oily hair and skin. The only good thing was I did lose some hypo weight. Well then he took me off meds for 2 wks and I went up to .22 TSH. He kept me off another 2 wks and I went hypo to 8.34. I gained back the weight and felt HORRIBLE. Every hypo symptom was magnified x 10 and I could barely function. He put me on .05mg for 2 wks and I went down to 3.15 TSH. He told me I was normal. I still felt horrible, although much better than @ 8.34. So after 2.5 months I went to this new endo and my TSH was 3.84. I thought he would be more up-to-date re thyroid treatment b/c he was a member of the AACE, but he only tested the TSH and told me I was fine @ 8.34. Sooo, I'm looking into a new endo b/c I am still feeling horrible and am sick all the time. I am trying to wait a few weeks to see if suddenly I'll feel better, but I have a feeling I need Cytomel or something else, but I won't have an idea til I see my other numbers (FT4, FT3...).
I've read some people notice a difference in a few weeks but for others it may take several weeks (6-8 or more). I found out that my RE should have started me on a low dose first and should not have tested me so often.
You might end up needing a higher dose or T3 supplementation (although I've read very few people do need it)...or even a different medication might work better. But, you'd probably have to try out this dose a little longer. Next time you are tested (TSH) I would ask for addtl tests to see if you are converting T3, or if you are processing the T3 well.
GL!

 
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Old 05-11-2006, 05:37 AM   #3
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Re: One Week Later

Hi Deena,
Sorry you are having a setback!
Yes, you could have fibro in addition to thyroid problems - many do-and CFS also. Could you have the same bug your son has? Also, I found what I eat and when I eat it makes a BIG difference. Eventually, we are supposed to get regulated, but until then, I think we will have up and down days (hypo people - not sure about hashi's) because...............of whatever in our lives. Stress is another factor. It affects thyroid and fibro. IF you do have a bug, the fibro and thryoid can be reacting to the stress your body has because of the bug. SO many things.............
Hope you are better today!!
Take care.
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Old 05-11-2006, 05:39 AM   #4
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Re: One Week Later

Quote:
Originally Posted by MOMOFBOYZ
I thought I was supposed to keep getting better everyday.
Deena... Sorry to say, that isn't how it works for the vast majority of people.

I see that you wrote that you felt better after 2 or 3 days. I don't want to say that it may have been "all in your head", because we hypo folks are mistakenly told that so often it makes me sick. But in actuality, it takes longer to feel well than that. One or two days of T4 treatment don't really make a difference. It usually takes several months... and it isn't a straightforeward process, either. You may feel good for a couple of days, then have a relapse. Your symptoms may get worse than they were untreated, or you may experience totally new ones.

Only a few micrograms of the pill you take each day is absorbed into your cells. The rest is excreted. The amount that the cells absorb builds up slowly, over a period of weeks. It takes at least 6 weeks for any particular dose to have its full effect, and it usually takes several dose increases for the optimal dose to be reached. After that optimal dose is reached, it takes several months for the body to heal from the damage it incurred during the time it was hypoT.

It took me 9 months to find my optimal dose, and another 3 months before I felt like my old self again. It may take you less time than that, but I wouldn't expect you to feel significantly better before 3 months time, and not completely better before 6 months. Everyone is different, though, and I hope it will be soon for you.

I always hate to tell newbies this, because it sounds so discouraging; but I think most people who were hypo and have found relief from their supplementation will tell you the same thing. HypoT requires a patient patient.

 
Old 05-11-2006, 10:09 AM   #5
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Re: One Week Later

Hi Deena,

I have Hashi's, fibromyalgia, osteoarthritis & another autoimmune process that affects my musculoskeletal symptoms: joints, tendons, and muscles.

My first 2 days on Synthroid were heaven on earth. My pain was greatly reduced within the first 2 hours of taking the T4 med. I did a lot those 2 days ... then of course the fibro flared as I wasn't 'in shape' for all that I took on & did. Over a 2 week period, my symptom/pain level gradually returned to somewhat less than previously, but never again did I have the original high -- until I got a boost in my Synthroid dose. Then the cycle repeated itself. Two days ... wind down.

I was sure my docs would say "it's all in your head," but that was not the case. It's true that it does take about 6 weeks for your body to go through all the adjustments it goes through when supplementing T4, and to stabilize. But T4 can start having an effect the first day it is prescribed. One of those YMMV things.

I've asked both my Internal Med doc & my Naturopath about this & they agree that, though not common, it does occur. According to the IM doc, if you can convert the T4 immediately to T3 & if there are hungry receptors waiting to gobble up the T3, you can get results pretty quick.

Many people w/fibromyalgia have a biochemical condition where there is excess "substance P" in the CSF of the brain & spinal cord. Substance P is like a megaphone for pain signals -- it intensifies them. Guess what inhibits Substance P? Thyroid hormone. So it makes sense that, if one is high in SP, getting the thyroid hormone levels topped off, so to speak, will reduce pain by inhibiting SP.

But why doesn't the effect last? You take some T4 --> your body registers the good supply of T4 --> negative feedback loop from pituitary via TSH tells thyroid gland to slow down on its own T4 production. Net: it's possible for T4 total to then decrease. The back & forth loops are complicated by the fact that T4 usually has a half-life of a week, meaning it sticks around in the blood on average for 2 weeks, although in some conditions the half-life can be shorter. So you have an "accumulating dose" effect that is meshing with the feedback loops.

According to the Naturopath, negative feedback loops to the thyroid via TSH are not the only mechanism responsible for what I experienced. When there is an upsurge of any hormone, anywhere in the body, cellular receptors downregulate in one of two ways: 1) they become less sensitive 2) they become fewer in number. The converse of this is, when there is little hormone, receptors are more numerous, and more sensitive. So when you first start taking T4, you likely have lots of these hungry little receptors that just gobble the stuff up. But if there's lots of hormone, readily available, they can get a little lazy.

A third mechanism is the downregulation of T4/T3 conversion enzymes.

John Lowe has researched & written extensively about thyroid hormone resistance syndrome in fibromyalgia. His scientific reasoning is controversial, but fascinating. Be warned: The Metabolic Treatment of Fibromyalgia is over 1200 pages & tough going unless one has a fair background in biochemistry. I was able to borrow this book through public library inter-library loan. Otherwise, it's very spendy.

Lowe, and other fibro specialists recommend the addition of T3 (Cytomel) in addition to T4 (Synthroid). I've been working on this with my doc for the past few months, but there haven't been any miracles. it's still taking a lot of time to get things worked out.

Bottom line: patience. It can take a while to find your optimal dose.

Best wishes.

 
Old 05-11-2006, 10:39 AM   #6
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Re: One Week Later

Midwest & Elmhar,

You are going to have to stop giving me all this info - I keep copying and pasting your info in the appropriate word docs on my computer - too much info to sift through - can't remember it all, that's for sure!

Serioiusly, I really really appreciate the time you take to educate all of us on this board! Thanks!!
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Old 05-11-2006, 12:30 PM   #7
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Re: One Week Later

thank you all for advise and input. I seriously have to get Dr. Lowes book. My t3 was low but endo said that wasn't the conerning part. Maybe I can convince him to try for the t3 pill as well. I need to learn more about fibro as well.
I really wasn't all in my head. I did feel better day three and four! Almost like I had found the missing secret for hundreds of people in pain. Then day five and six,seven......Although today I do feel a little bit better. Maybe did have some of Brandon's flu. I don't feel so in my gut though. Too many weird symptoms like the muscle twitchines. They almost always coincide with flu like feelings and the pain. I will say I haven't shuffled much at all since I started the Levoxyl. But whew!!!!!! I have seen healthier days.
I got my hair trimmed, gray coveres, bought a bunch of tank tops and new make up. Hoping to feel like a pretty woman again. It's hard to feel attractive when you are walking like an eighty year old.
Again thank you all for everything. I am going to start from the top of my post and reread what each of you wrote. Since I can't retain anything.
Love you all
Deena

 
Old 05-11-2006, 06:28 PM   #8
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Re: One Week Later

Everytime my dose is UPed, I get a high / burst of energy that lasts few days to week.

When I switched from Syn to Armour (tappering down Syn while UPing A), I felt better almost w/in 2-3 DAYS. But started doing afternoon crashes (B-A-D) after 8-9 days. So with Dr's ok, we added .25 mcgs of Syn (long acting, time released) along WITH 3/4 grain of Armour. I'm doing OK, but know that SOMEthing needs an increase. Doing labs tomarow mornin & seeing DelGado next Wed.

They do say that MANY thy patients feel BETTER after adding a t3 to their medicines. Synthroid isn't the only med out there, so don't let em shove you in that box IF it ISN'T WROKING for YOU.

Many {({({({ hugs })})})}) to you Deena, GLAD your taking care of YOU
Sue

 
Old 05-12-2006, 08:41 AM   #9
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Re: One Week Later

Hi Sudufu!!! How are you doing? How is your mom in law? I am sure she going thru hard times> My prayers are with your family.
This explain my day three and four feeling better and then downhill. But I am splitting 100 mcg tablets of Levoxyl and sometimes can't et split right. Today buying a pill cutter. See, Endo just gave me what he had in office. I think cause I paid cash. So they gave me four weeks worth of Levoxly and a box of Synthroid to take for the last two weeks until blood test and revisit. I will ask for the time relesed Synthroid that sounds good.
I hope your labs come back with answers to problems! I see Dr. Norman who dx with fibro. Still not sure if I have this for sure or thyroid damage that needs to be repaired. But he seemed nice enough. At least he believed the pain. Although he didnt feel labs were abnormal. Thats why I paid cash to endo.
Endo said my t3 wasn't that bad but it is low. I will push more about that at revisit.
Hope you are ok.
Had to cancel Disneyland. Brandon my 6 yr old still has a fever. Tyler my four year old took it so well! Troopers! Truthfully I am thankful. Blessing in disguise type of thing. Two hours at the fair liked to killed me a few days a go. But sorry for kids. We reschedlued in Sept. So maybe will have handle on thyroid.
Hope you have a beuatiful day. It is gorgeous in the high desert today!
Love and hugs
Deena

 
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