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    Old 01-09-2006, 04:41 PM   #1
    pixiek
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    Trouble adjusting to Meds: Calling all resistant

    Hi, I noticed that at least, myself, Sco24, and Scott all seem to have trouble "adjusting" to meds. I was wondering if we could share stories and help each other a bit? I will start with mine:

    Briefly, Graves, RAI, hypo symptoms but "ok" numbers. Started at 50mcg, felt worse and then increased and even changed to pigs until I went overdose. Felt really really bad on overdose, TSH very low and FT4 and FT3 very high. Slowly decreased hoping to stop where I felt better...never did at least in terms of brain fog. Some symptoms did get better including fatigue, but I still suffer with foggy head and before med that would clear in the PM, but now on meds I get even less of that relief.

    After the decrease I stopped pigs as my T3 was way high and T4 lowish. Started over again on synthroid. Now I am on 37.5 mcg of "synthroid" having raised from 25mcg. I am working with holistic doc and recently finished a liver detox. I continue to have brain fog and feel "jet lagged" recently when I wake up. I also have sore heals. By far the worst and most prominent symptom for me is the constant brain fog. I take my med at night as when I take it I immediately feel "drugged" and this side effect sometimes lasts for hours.... I don't know why I have this nor do I know why I continue to feel so brain fogged.

    My plan is to increase my meds very slowly until I am in the upper 1/3 to 1/2 of the lab ranges ...but I will only do this if I do not feel worse. I have not ruled out trying other brands, but I suspect this is not my problem of allergy to fillers.

    Well, the sad truth is the meds are not helping after 9 months all together, the way I thought that they would. I am running out of test to take and things to consider. Most other blood tests are really quite "normal"...pretty sure all my trouble is thryoid, but doc is giving me stress on that....latest thing he told me was to "live with it" aND GET A HOBBY AND SO FORTH... I am sticking with him, believe it or not, for the time being because at least he "humors me" and lets me try what I like...at least I do have my holistic doc in the states to fall back on it... ...I just want to feel and think..

    Believe me, if I find out why I am NOT benefiting from the meds the way others apparently do, I will let you all in on the big secret!!!!! anyone else? Pixiek

    Last edited by pixiek; 01-09-2006 at 04:46 PM.

     
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    Old 01-09-2006, 05:19 PM   #2
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    Re: Trouble adjusting to Meds: Calling all resistant

    Your not the only one having trouble..Im stuck at 37.5 and cant go any higher if i do so . I tremble , shake and anxiety imceases..Sucks the major one!
    Take Care...

     
    Old 01-09-2006, 06:50 PM   #3
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    Re: Trouble adjusting to Meds: Calling all resistant

    Hi, sorry you are not feeling well at 37.5...me at the same amount.

    Though I do not have these problems, here are a couple of suggetions that have helped other folks to be able to increase their thyroid meds:

    1. adrenal support (find out if you need it by saliva testing)
    2. Ferritin raising (below 50 for women is suspect...raise to 50-70)
    4. careful of diet and supplements: no soy, iron and calcium away from when take meds.

    This might help some folks...as it turned out I was ok on these issues...though always room for improvement!

     
    Old 01-09-2006, 07:25 PM   #4
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    Re: Trouble adjusting to Meds: Calling all resistant

    yeah it is strange. it started for me with the ACL surgery and meniscus repair. im 23, and was in perfect health before this.. but 2 weeks after surgery i started getting off balance, lightheaded feeling all the time.. really horrible.. hit me outta the blue too, when i woke up one night to use bathroom, couldnt walk straight. ever since then i've had it, and certain times it feels better, like in the morning when i wake up, or when i work out seems to clear up.

    so after that dizzyness garbage, i started getting tingling and muscle weakness, twitching. so anyway, the only thing they really found was thyroid. so now on 50 mcg of levothyroxine.. i've taken it now 3 times, and pix i do as well feel "drugged" for a bit after i take it.. like my head feels slow and my eyes feel lazy. and my off balance feeling feels worse, i dont really feel fresh in the morning or when i work out as much as before meds.. why? frustrating.

    so im thinking maybe it has to do with titanium allergy, since they put titanium screws in my knee.. maybe that has caused the thyroid debacle. im gonna get a MELISA test to see if i am allergic.

    also, i've completely changed my diet, no dairy, gluten, refined sugar, etc., so i highly doubt its food related anymore.

    also, i've just bought selenium to try and take that. i heard it helps thyroid and flushed toxins out of the body.. we'll see.

    i also, totally agree that the worst symptom is the damn head problems.. my doc says she's seen it before, but i want it to feel better, really annoying. im gonna talk to her tomorrow about possibly being allergic or sensitive to the levothyroxine, and maybe cut the dose down to see if that helps. or maybe if i stick with it this all will go away.

    or maybe the ligthheadedness has nothing to do with thyroid? but what else? another autoimmune disease.. God only knows, but i'm thinking it might have something to do with the THYROGLOBULIN antibodies i have.. Hashimotos. . so would this make sense,

    if the antibodies are high, or causing the head symptoms, then even if you take levothyroxine, its not going to stop the antibodies, so then why would it stop the symptom of dizzyness or lightheaded or brain fog or whatever? wouldn't it just keep going like it is now, until the antibodies are gone? or have nothing else to attack?

    but yea, i want some damn answers.. im tired of this.. least tell me what's causing it and why it aint going away..

    so maybe its a question of eliminating all allergic things such as food, metals, etc. from your body, then maybe the antibodies will go away, or decrease significantly. i need those two tests.. MELISA, AND ELISA (for food allergies), then i'll keep my body clean and hope it heals itself.. cause this is getting rediculous.

    scott

    Last edited by Sco24; 01-09-2006 at 07:27 PM. Reason: misspell

     
    Old 01-09-2006, 09:28 PM   #5
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    Re: Trouble adjusting to Meds: Calling all resistant

    Quote:
    Originally Posted by pixiek
    Hi, sorry you are not feeling well at 37.5...me at the same amount.

    Though I do not have these problems, here are a couple of suggetions that have helped other folks to be able to increase their thyroid meds:

    1. adrenal support (find out if you need it by saliva testing)
    2. Ferritin raising (below 50 for women is suspect...raise to 50-70)
    4. careful of diet and supplements: no soy, iron and calcium away from when take meds.

    This might help some folks...as it turned out I was ok on these issues...though always room for improvement!
    Hi , ive had my adrenals tested they were fine a little to fine actually.. my levels were a bit high.
    Ferritin could be low , im not for sure though im a strong protein eater..lol
    Also I dont take meds by mouth , I take my in a transdermal form..I think my body is just down right stubborn,.
    Maybe this madness will end for all of us that is suffering.. Take Care

     
    Old 01-10-2006, 03:29 AM   #6
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    Re: Trouble adjusting to Meds: Calling all resistant

    heres a thought likeme: when adrenals are "too high" I heard, this is what they do just before they "burn out". In other words, the fact that they are too high indicates that they are working overtime to make up for what your thyroid isn't doing...and if you give them some support this time it will save bigger trouble on them later...now look, this is only what I read and have heard about adrenals...if you are interested in this theory, you might take a look online. You can get over the counter glandular suppor for adrenals...I had read many folks doing this as well ....don't know...just a thought...Pixiek

    Scott: hope the meeting with the doc goes well...no doubt you need some meds, just a matter of how much and how fast, and what kind...probably !

     
    Old 01-10-2006, 04:08 PM   #7
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    Re: Trouble adjusting to Meds: Calling all resistant

    Quote:
    Originally Posted by pixiek
    heres a thought likeme: when adrenals are "too high" I heard, this is what they do just before they "burn out". In other words, the fact that they are too high indicates that they are working overtime to make up for what your thyroid isn't doing...and if you give them some support this time it will save bigger trouble on them later...now look, this is only what I read and have heard about adrenals...if you are interested in this theory, you might take a look online. You can get over the counter glandular suppor for adrenals...I had read many folks doing this as well ....don't know...just a thought...Pixiek

    Scott: hope the meeting with the doc goes well...no doubt you need some meds, just a matter of how much and how fast, and what kind...probably !
    Yes, Ive Heard that as well..Ive been trying to take some B-vitamins to support them..However I think my adrenals went high b/c of the nature throid i was on..I was kinda thinking since it shot my t3 up so high it threw a curveball in on them..I pray that was the reasoning b/c I really dont need to end up with adrenal fatigue as well..Come to think of it I need to recheck them..Here is some old labs..
    11/09/04 9:00 AM 14.7 ranges 5-25 / 3:00 PM 15.5 ranges 2.5 - 12.5

     
    Old 01-10-2006, 08:22 PM   #8
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    Re: Trouble adjusting to Meds: Calling all resistant

    Sco24,

    Dizziness and muscle weakness can be related to adrenal fatigue - especially if you experience it after a surgery (which has put great stress on your adrenals). I had symptoms like that which cleared up for me after I began taking 20mg/day Cortef - salica test showed below normal cortisol production. Have you had a saliva test for your adrenals?

    Pixiek,

    I'm so sorry you are continuing to not feel well. Like you, I have not received quite the symptom relief I was hoping for - and I've tried so many different thyroid meds and combo's. Just finished doing about 6 weeks on a 98%:2% ratio of T4:T3 - lost more hair, and had some horrible heartburn and anxiety, so went back to my Armour with gladness. The anxiety, heartburn, and hair loss cleared up right away.

    The main symptoms which I wanted to clear up are the ones that have disabled me - made it impossible for me to work. Muscle/joint/soft tissue pain, leaden paralysis, and overwhelming fatigue have not cleared up with thryoid treatment. I have brain fog as well, but it is tolerable for me - I'm not as quick as I used to be, but I can still do a lot. It just takes me longer!

    Tomorrow, I am going to try a new medicine, Cymbalta - it has helped some "fibromyalgia" patients with their pain, and sleep problems, so I am hoping it will help me. This year, it will be 17 years that I have been in constant pain, with no relief at all - even with strong narcotic pain meds. I am half afraid to take the Cymbalta - I am afraid I wll fall into deep despair if it doesn't help me. I am already pretty close to despair.

    If I tell you to "hang in there," then I will have to do that myself, so, I guess I'll say: "Hang in there, Pixiek." Sooner or later, we will find the cause of our problems, and a treatment. I just pray it's sooner, rather than later!

    Love and Prayers,
    Ora

     
    Old 01-10-2006, 11:39 PM   #9
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    Re: Trouble adjusting to Meds: Calling all resistant

    Oh, Ora, it does all get tiring doesn't it! I had an "I have had it!!" day today and I think that is also becasue I am 47 and my mom when though meno at 48 and I am probably heading that way. All hormone blood tests checked out ok, but I get some kind of PMS two weeks before my period...I am sure the interplay between the thyroid and the female hormones are giving me lots of fun.....

    I hope your new med works for you..prayer coming your way right now...............there done. Yes, let's hang in there ...what else can we do? Pixiek

    Likeme: Yes, I agree that dosing, too much or too little, can throw off the adrenals and I think other hormone tests as well...I have at least one blood test, ferritin, that was thrown off by overdose on thyroid meds...so I wouldn't be surprised if it would do the same for others.

    Sounds silly but I HOPE to find something else wrong and then I can take a pill and "fix it"...yeah, right....

    Sorry I can't offer more info on the adrenals...lost a bit myself on that as well ! Pixiek

    Last edited by pixiek; 01-10-2006 at 11:43 PM.

     
    Old 01-11-2006, 09:07 AM   #10
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    Re: Trouble adjusting to Meds: Calling all resistant

    Pixiek I can really understand what you're going though. When I was first given T4 it was a COMPLETE nightmare. Rage way beyond control. Had to take my wedding ring off 24 hours after starting meds and I still can't wear them (I didn't have any problem during my pregnency). Brain fog to the point of hallucinations. Parinoid and fear beyond belief. Hypoglycemia as well. I ended up quiting my job because i was on the verge of a nervous breakdown. Periods stopped within 3 months. I had several bouts of laying in bed for about 4 or 5 days with a major headache, dry mouth and body pain to the extreme like I had just fallen down a flight of stairs. On the forth occasion this happened my husband finally called an ambulance. They immediately gave me a shot of cortisol and my headache went away almost instantly. They made me drink tons of water every day but I was urinating as fast as I was drinking the stuff. I was off of my meds for 4 days and finally started to feel better. Then the docs put me back on meds. I literaly went CRAZY in the head. I begged for the nurse to get the doc. He didn't come. I walked out of the hospital and stopped my meds for about 3 months. TSH went to 29. new doc tested my pituitary. ACTH and growth hormones were non responsive - the doc was shocked. I was put on cortisone and back onto thyroid RX but this time Armour. The doc told me to get my armour up to full dose within 2 weeks - major setback. The cortisone also didn't help.
    Stopped my meds again. Then they put me on estrogen. Now I'm back on Armour and slowly, VERY slowly increasing and started to feel some hope. I have stopped the cortisone and the estrogen. (they still say I have polyautoimmune disease...I think I had a strange toxic reaction). Oddly enough taking selenium causes the same reaction as synthetic T4. I've been to over 20 docs and it's amazing the rude./stupid comments I have heard. It's also amazing my husband is still my husband...LOL.

    I will probably never know why I had such an extreme reaction to T4 - it started to completely shut down my pituitary. But I am very certain that my low cortisone was causeed by the synthetic T4 and NOT the other way around. I do feel however, this reaction was because there was something else going on that was missed. The synthetic T4 was EXTREMELY toxic for me. Probably my body couldn't convert T4 to T3 so the T4 was just building up. However this was never proven with blood tests.

    Try reading 'adreanl fatigue in the 21st century'. It's possible that because of all that you have been through your adrenals as weakened. Which is NOT the same as having addison's but makes adjusting to thyroid RX nearly impossible just the same. If you cannot get a saliva test done you can always start by trying taking vit C to the bowel tolerance (taking 1000 untis every hour until you have the runs and then reduce the dose slightly). I found this helped a lot for me. Some people can take as much as 10,000 untis or more before reaching bowel tolerance. You might even want to try the addisons board on HealthBoards. They were a lot of help for me. If you are able to have a doc do some testing of you adrenals be sure you are WELL informed about the testingt methods. Many docs do it wrong!!!

    You might also want to see if mercury is an issue for you. Do you or did you have amalgams? I know you did detox but you said this didn't include mercury. Mercury can block thyroid hormones.

    As for me, I'm stilll not out of the water yet but I'm just about at the 3 year stage and I'm slowly starting to feel a sense of hope. Although I have setbacks almost every other week. But at least I'm staying out of the hospital. My biggest problems are all over body swelling and the rage. Plus part time depression.

    Hang in there and good luck,
    Robin

     
    Old 01-11-2006, 03:15 PM   #11
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    Re: Trouble adjusting to Meds: Calling all resistant

    Thanks robin, your story helped! Can't believe so many doctors think that thryoid meds are so innocuous and on the other hand other docs are so stingy with them! What they don't get is that this is not a simple disease that is "cured" with a little pill.

    I totally agree with you, with what I have been through as well, that going slow will give the best results....no one knows in advance if they will have intolerance issues or not...and once you overdose, you are just going to have to put in the time on the other end coming down off that anyway!

    This disease is hard sometimes on even the best relationships...I snapped at my husband yesterday, though he was only being kind..."are you not feeling well today?" he innocently asked.....to which I snapped "I DON'T FEEL WELL EVERYDAY"...nice eh,? So lock me in the closet!

    Still waiting to hear from my holistic doc..he said give me a week...I am counting the days, hope he does not let me down! Pixiek

    Last edited by pixiek; 01-11-2006 at 03:17 PM.

     
    Old 01-11-2006, 03:18 PM   #12
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    Re: Trouble adjusting to Meds: Calling all resistant

    Pixiek,

    Menopause really does complicate an already existing thyroid disorder - especially one that hasn't been treated. That's what happened to me. I was so sick for over 15 years, and then, I became bed-ridden, unable to put any pressure on my legs and feet (due to intense pain). My muscles were spasming in the neck and shoulders, and I was suffering horribly. My doc gave me a shot of cortisone, and I thought I had died and went to heaven! But, that shot of cortisone falsely decreased my TSH (which had always been normal, which is why I was mis-diagnosed for so many years), which led my doc to send me to an Endo, who FINALLY diagnosed me with Hashi's. The Endo confirmed that I had been suffering with thyroid disease for many, many years.

    So, I am sure that my nightmarish menopause symptoms were due to the undiagnosed, and untreated thyroid. You are fortunate that you don't have that problem complicating things for you right now, and can concentrate on the thyroid problem. And, your menopause may not be so bad, if you can get the thyroid controlled.

    Have you tried bio-identical progesterone? I forget...sorry. But it has been shown to be helpful with some PMS symptoms. The "estrogen dominance" theory. Are you familiar with it? It might be worth checking into, since you experience PMS.

    Thank you so much for the prayers. I took my first dose of Cymbalta today - no immediate lifting of the "leaden paralysis" like I had with Effexor XR, but that doesn't mean I won't get some benefit in a couple of weeks. A little dizziness, and stomach upset - why do we have to get the bad side effects before we even notice a GOOD effect? Sheesh!

    Love and Prayers,
    Ora

     
    Old 01-12-2006, 03:00 AM   #13
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    Re: Trouble adjusting to Meds: Calling all resistant

    Pixiek, because you went from hypo to hyper from too much meds your adreanls probably suffered a lot. Adrenal fatigue is really hard to DX and is often missed.

    My husband seems to tolerate the synthetic stuff fairly well but he always gets a small but needed boost from taking about 5 mg of hydrocort every morning.

    Do you think there is much chance you doc would let you try a small amount of hydrocort? Never go over 30 mg but if you could try 5 or 10 mg it might help. This would probably only be short term until you can find the correct thyroid dose. For some this small dose can make a BIG difference. If you want to do adrenal testing first do it BEFORE ever trying hydrocort. Many people/docs are afraid of hydrocort but if you take a low dose as mentioned above it is safe. (If you can read 'safe use of cortisone') Also, check your DHEA (usually a saliva test could test for cort, DHEA , estrogen and progesterone).


    In the book from Dr. Peatfield, he talks a bit about some people have toxic reactions to T4 and a course of T3 only helps. Have you given this much consideration.

    I know you said that pig and syntheitc both make you fill not so good but did you really give pig a good long and slow try? Or what about pig and synthetic mixed. I tend to be very much against synthetic. Without a doubt when I was taking synthetic I felt really close to death at times. And, although I have a long way to go, with pig I no longer feel that close to death. Although I am sensative to other meds interfereing with my armour (I stopped the mercury detox for this reason...I was nearly in a coma).

    Yeah yelling at loved one...I know that well. I screamed 3 times at my daughter this morning for really STUPID reasons. It wasn't just yelling it was actual screaming at the top of my lungs until I went horse.

    I wish I could offer more help but I'm so often just trying to get through the day and struggle to even help myself.

    Lots of healing hugs from Germany,
    Robin

     
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