I NEED HELP. THYROID

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I had my thyroid remove in 2013. There has not been a time when my thyroid level been NORMAL or I felt NORMAL. I did have cancer they say it was soooooo small which had me puzzled. Which I wasn't having and signs and at the time all my levels was normal it was I fell and hurt my neck and then they found a few nodules on the MRI....AGIAIN LEVELS WAS NORMAL.I had blood work last week my TSH was 0.04 and T3 325 so they lowered my  Armour thyroid to 150 now my  anxiety is so HIGH. My life is in The dump since I had my thyroid removed. If anyone have a  suggestion please please HELP

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13 Replies

  • Posted

    I too lost my thyroid to cancer, in 2001. Because I had thyroid cancer, my endocrinologist keeps my TSH no higher than 0.05 and requires that it must be at minimum detectable. My TSH is typically 0.01.

    Each day I take Synthroid 125 mcg plus Cytomel 10 mcg.

    Were you anxious before you lost your thyroid? Or is this a new symptom that began after you began Armour's Thyroid?

    Because I must always be in this state of hyper, I also take sertraline 50 mg. It took quite a while for me to settle in with my new normal.

    Perhaps you can work with an endocrinologist who is highly trained in these matters.

    In the meantime, consider avoiding things that have caffeine in them...coffee, most soda pop, energy drinks, and the like.

    hugs

  • Posted

    Hi Laya, Armour comes from pigs (porcine), which have a much higher ratio if T3:T4 than humans.  This can cause anxiety. To elaborate, thyroid anxiety can be caused by several factors: 1) low thyroid, 2) low T3, 3) high T3, 4) non biological T3:T4 levels (if say your T3 is at the high end of normal and T4 is at the lie end, for example), 5) your thyroid disease us advanced to the point that the rest of your endocrine system is affected and you have adrenal exhaustion, 6) your medication is increased or decreased too fast, 7) medication side effect.

    You say they lowered your meds based on TSH being too low and T3 being high? What was your T4? My guess is it's not in the high end. If your T4 is low, you'll have brain fog. 

    Also, three years since your surgery and the meds still aren't right? Shop around until you find an Endo that can get the dose right. 

    Im trying ThyroGold for my mom, which is a non prescription Bovine glandular supplement.Shes had her thyroid removed and I've struggled with helping her get her meds right, along with my own struggles. I'll keep you posted on how that works. 

    Also, there are many dietary and suplements that can help a lot. So add those to your list. There are many posts on this site that have great advice! High protein and glutenfree diet, minerals, amino acids... 

    Lastly, all this thyroid roller coaster stuff is really hard on the body and causes the rest of the endocrine system and hormones to go haywire. Get yourself a good hormone book, and acupuncture so you have some ways to get your system back on track more quickly.

    • Posted

      My T4 1.0.... I just found this Endro she took me off that  Synthroid and put me on Armour Thyroid and all the pain in my knees are gone I was almost in a wheelchair if I didn't find this lady... but now my A1C is high and my cholesterol is high 

  • Posted

    I was on  Synthroid when I first had my thyroid remove that was the WORSE... I couldn't walk I was on 9 different meds just from my thyroid,, like pain pills,anxiety medicine, sleep medicine, muscle relaxers,  steroid injections in both knees . Then when I got off Synthroid and they put me on Armour Thyroid all those meds besides this anxiety I feel like I am one pill away from falling off 

  • Posted

    At first, Synthroid felt all wrong to me...but my endocrinologist told me to work with her and that together we would find s balance.

    When your thyroid is first removed, it is like pulling a plug. And thyroid medication take six weeks to effect a change measurable in the blood. At one time I was on 212 mcg, now I am on 125 mcg.

    A responsible endocrinologist wull slowly increase thyroid replacement medication. Inirially, I had blood work every six weeks for about three years. My medication was slowly adjusted every six weeks.. A small amount of medication can overshoot the desired result.

    Fortunately, my endocrinologist understood the difficulties adjusting and was so reassuring.. I would say, I am loosing my hair...she would say, promise this is just temporary, your hair will return ...and so it did. The crying jags, the so tired but can't sleep, the dry skin, the diarrhea, the constipation, the I just can not settle ALL have resolved. And now I have blood work every 6 months and the only time I must repeat a test us if my antibodies increase. I used to gi batty when they would increase, but now I just know to give them a couple of weeks and they will come back down.

    If your endocrinologist is not on board they way mine is, perhaps you should reconsider your endocrinologist

    • Posted

      Wow! That's amazing!  So fortunate to find someone so diligent. You are honestly, the only person I've ever met who was able to work with the levo. Seriously. I know a lot of people with thyroid disease.

    • Posted

      We are a society that wants everything at warp speed...thyroid is ploddingly slow.

      If I make a change in thyroid medication today, my blood will not show the full results of that change for 6 weeks. It is preferred to gradually increase every 6 weeks because if you overshoot optimum, the symptoms of hyper are going to be just as troubling as those of hypo are. So once T4 and TSH were where she wanted them, she increased T3 only. Think radio station, you have reception... and static. So you fine tune the reception with T3 and lose the static.

      Only considering patients on Levothyroxine-Synthroid, about half will feel great improvement if their T3 is about 75% of normal range, for me that level is about 3.7.

      Remember, my endocrinologist exclusively prescribes Synthroid not Levothyroxine. Her prescriptions specifically prohibit substitution.

      T4 (Thyroxine), named for it's 4 iodine atoms, maintains a relatively stable blood level and is therefore termed long acting.

      T3 (Triiodothyronine), named for it's 3 iodine atoms, fluctuates and is therefore termed short acting.

      Let us ingest T4 (Thyroxine) Through chemical reaction, our body takes in T4 and converts the T4 into T3 (Triiodothyronine) through chemical reaction, our body takes 4 iodine atoms and converts it into a new compound with only 3 iodine atoms.

      So from a strick biological & chemical viewpoint, many say if I can use one chemical compound to make the other chemical compound, I only need T4.

      But, many studies have shown that about half of the patients on T4 feel better on both T4 and T3.

    • Posted

      No no no that is not true. I was at my worse on that  Synthroid. Days I mean of getting on Armour my mental  status was so much but yes my blood levels was high. It's not about a fast fix it about feeling halfway NORMAL. Like I said I didn't have any  symptoms of a bad thyroid... before they removed my thyroid my LEVELS was normal. It's just after they took it 

    • Posted

      Interesting when we put thyroid disease into context of it takes a while for the meds to work. You're right, for disease, people want it cured fast, but disease takes years or decades to develop, so takes often years to heal.

      I was horribly I'll on the Synthroid. Tried it and levo in various forms for several,years. None of it worked and I wound up with a massively larger cyst and such brittle bones that I was bedridden for months with a broken foot. I went back to the NDTs at that point. Then later to a glandular. A little better, but not much. My background is molecular biology and chemistry, so once my head was clear enough to think, I started looking at other possible ways to intervene in the thyroid feedback loop. The amino acids seem to help, so I tried skipping the glandular one dose and immediately felt better. So I dumped it and continued with the amino acids. Seriously. I've spent my life struggling with thyroid disease due to low protein? Urge!

    • Posted

      No wonder we click....we are both science nerds!

      The take away here is not ALL PEOPLE, but about half feel improved with supplemental T3.

      When your thyroid is removed, it is like slamming the breaks on in the car .everything stops suddenly. The thyroid is the thermostat of the body...if it is winter, the house develops ice cycles, the water in the pipes freezes, the water pipes burst and when the thermostat is replaced, you still have a lot of repair work to do...all of the ice melts and now you have water damage as well as pipes to repair.

      I absolutely understand everything each of you have had to say...I agree with you that the emotional aspect makes one feel out of control. I was truly blessed that Susan Henley was up to date and on her game, that she stuck with me even when I cried buckets full in her office. Cytomel was a hugh turning point for me. Tweeking the dose brought a complete sigh.

      I lost my thyroid on September 12, 2001. I under went full body radiation on March 12, 2002. I had blood work every 6 weeks for a couple, three years...then it was every 12 weeks, now every 6 months. I lost my hair, I went down to 82 pounds, I couldn't wake up, I could not sleep, I could not stop crying, and I had an endocrinologist who would not let me give up.

      I took Armour's thyroid for a short time in 1971...That is much too long ago to recall. Armour's Thyroid is a discussion I am interested in reading and learning about.

    • Posted

      One grain of Armour's Thyroid is 60 mg and contains .038 mg (or 38 mcg) of T4 and 9 mcg of T3 , plus unmeasured amounts of T2, T1 and calcitonin.

      Synthroid is all T4

      This proves the T3 point.

    • Posted

      Wow, you've been through hell. I guess we all have. Each our own uniquely similar thyroid hell.

      I'm not sure I agree with your conclusion on the T3!  exactly. I feel the synthetic T4 is not biologically active or just plain doesn't work. My experience was that it shows up in blood tests, but little or nonrelief from symptoms, so not really doing anything other than showing in blood work. I didn't try the cytomel. My guess is the levo works very minimally, if at all. The cytomel might be more biologically active. Also, we think we know how everything works as far as what does what. T4 converts to T3, etc. But I can tell you from the various meds and supplements I've taken, that there's a ton to be discovered yet. So much of what I've dealt with for the thyroid is, "that doesn't work the way we think it does."

      Also Synthroid, specifically contains a bunch of stuff that triggers the immune system, including acacia, dyes, dairy or wheat. Can't remember ecactly, but basically at least three major allergens. Put this with a tweaked biological and it's a recipe for cancer or at the very least, severe autoimmune disease.

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