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1220571 tn?1274841195

Thyroid epidemic? Or???

Goofy question, but I just had a lady come to my house, and has been diagnosed with Thyroid, and on meds...and she said, nearly every woman she talks to has a thyroid problem......Is there a common thread? I've experienced the same as her...I've talked to so many when I feel like going out, even men with thyroid issues....I'm only wondering, what would happen if we did nothing, if there are no other issues except thyroid, as in we're older, and tired.
All of this is mind boggling to me...please know that I am not writing this to complain, or put anyone or anything down, I'm just writing because, it seems with so much of it, they're must be a cause that we have missed.
Again, I'm just processing. I know I sure have been sick for several months...my thyroid counts were normal, and my Dr. put me on 100MCG Levo. and I have a very slow metabolism...my counts are still way off...as in TSH is 0.011, Low normal at my lab is 0.450. Quite a difference...I've not been well since starting the medication...except for 2 days.
I found a new Dr. and he is turning over every stone, as in tests, tests, tests...Since Dec. I have had 2 good days, the others I've been pretty much homebound except to go to the Dr. or hospital, or lab...My new Dr. said, he does not believe in treating symptoms...he wants to find out what is causing all of my problems...Thanks for letting me wonder online...I've always been intriged by medicine and the humans body...and what makes it tick...
Have a blessed day, all who read this....I care, and my thought and prayers are with you, as I know how sick I have been, and I have lost over 20#. I didn't have it to loose...and how I wish some of you could share with me what you want to loose and I could gain back at least 20#. I'm rembling so, time to stop....Sharon
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1220571 tn?1274841195
I had intended for the above post to be private, but was too long...sorry...
Helpful - 0
1220571 tn?1274841195
I started Levo. on the 19th. of Jan...so not quite 3 months. It seems like much longer.And yes, it was brutal, I've not been well at all since!
My symptoms when he started me on the med...(though he did not know the symptoms as he would not listen to me....so I just shut up...and let him do it his way...and, I had no idea what I was facing...or I probably would not even have taken the first pill. I had no appetite, I had to force myself, and would use Ensure, to make sure I had some nutrition, off and on what I call my  heart weirding out, like lots of butterflies turned loose in my chest. It would only last moments...I've experienced this as long as I can remember, so I just figured it was anxiety. All kinds of gut problems, IBS. I just plain felt awful. Reading below may explain some of it. The Dr. I am seeing now says we have to go off of it slowly as the risk for heart attack or stroke are too risky.
more to follow.
In Oct. 4th. I broke off a relationship with a man I have grown to care for, who had leukemia, I did great once his treatments were done, that took 1 yr. once he was told he was in remission, and in his case possibly cured...He started lying, drinking and smoking...those are not acceptable to me...I took a dive, emotionally, physically, spiritual...I had started treatment for PTSD before Aug. 09. My granddaughter had been killed in 06. My psychiatrist with the help of my therapist, diagnosed the PTSD. and I began treatment for that in July '09 I had been rear ended twice in less than two years, and kept telling the Dr. when he would squeeze my sholders that I felt a chocking sensation....told the physical therapist and chiropractor the same thing, of course, you know they all said, oh, it is just tight muscles from the whiplash, in the first accident, then darned if a little old man didn't nail me in Taco Bell parking lot, and insisted it was my fault, and that he did not need this...I was in tears, and said, fine, I'll take the blame! My ins. office was just across the street so I drove over there once I gained my composure, as I could not believe three accidents in two yrs...none of them my fault...I took my keys in in tears and told them, I am so done...I don't ever want to drive again....of course I am, but I was really upset, at the time! So, I know you did not want to hear my life story, or the past 3 yrs....and you can feel free to tell me so. I have called the girls PO who was driving the car, Mandy was killed in, at least 4 times, sent a couple of e-mails...all with no response, so called her boss, and today, she returned my call, this gal has not been doing the conditions of her parole...This is a long story so won't go into it....so here is where I believe my thyroid became a noticable issue for me, though I never thought of that as being the problem, I thought more like tumor, or some such thing....so finally one day at the end of last yr. I was looking in the mirror and saw this small lump on my neck, and I gently manipulated it, and behold when I pushed it toward my wind pike, the same sensation...so back to the Dr. I said, I have this lump on my neck...his first question? Get this....how did you know you had a lump on your neck, my answer, I looked in the mirror. So I know I have had this for at least 3 yrs. He said, you need to go downstairs, as soon as you leave here and get a blood draw, so I did, then the marathon started, ultra sound, 2 day thyroid uptake scan, then fine needle biopsy. And, he went on vacation so I had to sit on it and wait for him to get the results...My psychiatrist, just happens to rent a room in his office as he comes down from Eugene every Thurs...I told him what had been going on, and he asked if I would like for him to tell me, and he went to my chart, and told me, no cancer...etc.
At the rate I am going off of this, and the # of refills he gave me it cold be just over 5 months. He said, he wants blood draws every 4-6 weeks, he said, he kind of prefers 6. So I will keep those up...
I'll quit now, it has been a tough day for me emotionally...I'm so angry at that man, (Dr.) I've just felt anger, furstration, I hate taking the pills, but know I have no choice...it has just been one of those days for me...and I really appreciate your comments and questions....thank you, so very much...I'll check later, in the event you write again...
Helpful - 0
Avatar universal
Unfortunately, that's a total T4 test, not a free T4.  TT4 is considered an obsolete test.  However, it is within reference range.  TSH also looks very good.

Going from 0 to 100 is brutal, especially since you've said you have heart issues.

Were you having hypo symptoms when he started you on the 100?  Thyroid or other neck pain?

I'd just continue getting off the levo slowly and make sure to have bloodwork about four weeks after every decrease to make sure your thyroid is kicking in and making its own hormone.  It may take some time for the thyroid to start working optimally again.  How long have you been on levo altogether?
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1220571 tn?1274841195
Oh, crumb forgot to say, he said, I needed the medication to keep the goiter from growing!
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1220571 tn?1274841195
Sorry, my thinker, processor is off today...I just re read your question and see that HR is heart rate....
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1220571 tn?1274841195
Here are some of the labs he used to justify putting me on medication...FNB I'll send the COMMENT: The fine needle aspiration slides are remarkable for occasional small clusters of bland thyroid follicular epithelial cells. The cellularity is relatively low. No repeated microfollicular complexes to suggest follicular neoplasm are seen. No cytologic or architectural features to suggerst papillary carcinoma are seen. No psammoma bodies are identified. Hurthle cells with admixed lymphocytes to suggest Hashimoto's thyroiditis are not identified. The findings are most consistent with nodular hyperplasia. Clinical follow-up recommended.

Labs minimal at best are: TSH  1.210    Normal 0.450-4.500
                                              T4        8.3      Normal   4.5-12.0
I'm assuming by HR you are meaning heart rate! It was 108, that visit.
That's it..he did some liver tests, CBC, Comp. Metabloic Panel
There was one H and one L, there, the blood work was otherwise normal.

Yes, I have a goiter, and yes, I went from 0 to 100. And my body, has been miserable since...      
Helpful - 0
Avatar universal
If your HR is high, that does not indicate the need for thyroid meds...usually, lowered HR is a symptom of hypo and needing meds.  If you have a heart issue, starting at 100 mcg without a slow buildup is not recommended, to say the least.

However, we do know that just because your labs are in normal range does not necessarily mean that you are not hypo.  We are not all comfortable ANYWHERE in the range.  Some of us have to be in the low end, some in the high end, etc.  I'd have to see the labs that caused him to put you on meds to comment further.  

The aim of treating someone who is hypo is not to make them hyper and then get them "back to normal".  The aim is to get them normal WITHOUT making them hyper.  This is why dose changes should be in very small increments...25 mcg at most.

You will feel better...you just have to find a doctor who knows what he's doing with thyroid.  Some are clueless.  Try magnesium for the constipation...you want elemental magnesium.  If it's any other type of magnesium, you have to check the actual elemental magnesium content in the capsules, which can be quite different from the nominal weight of the entire capsule.  I take this for other reasons...300 mg, one after lunch and one before bed.  I believe others on the forum take more, but it seems to work for many of us for constipation and can also help with muscle aches and insomnia.
Helpful - 0
1220571 tn?1274841195
Yes, it is correct that he put me on 100mcg  of Levo my counts were all within range, as was my TSH...etc...and his nurse said now we are going to take you the other direction, as in low...then we will try to get you back to as close as normal as we can.......Before I left him, as a physician, he reduced the Levo to 88mcg, My pharmacist has lots of first hand experience with Thyroid...pharmacist said, based on my high counts that was not much of a drop at all.
Dang, now within minutes after I take the Levo. I get heartburn and indigestion, and it stays with me pretty much all day...I do take Tagament before eating...I'm getting so tired of this...cause it makes me not want to eat...and it doesn't seem to matter how bland, BRAT diet or ? is, I still go through this...so my counts must be coming down...
I'm sorry, but I hate this...!!!!!!!!!!!!!!!! Am I ever going to feel good again.???? I kow you can't answer that. I just had to say it.Then there is the constipation issue...I not being uplifting in the least today, for others....Sorry!
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1220571 tn?1274841195
To answer your last paragraph above, I agree that stress can aggrevate any illness...and actually cause many of the, like you mentioned autoimmune diseases.
The Dr. who put me on 100 Levo. had my labs and they were normal...he said, he had to put me on medication to keep the goiter from growing...that was his reasoning. End of story, he wrote the scrip and left the room. I did not have a clue about Thyroid issues, so just assumed he was doing what I needed. As for symptoms, I was not doing well, but we did not discuss my symptoms..he just commented I see your heart rate is a little high there, it was 120. It always went up when I went to see him, so did my BP. Maybe he did know what he was doing, but forgot about how my body does with meds, and how I have to start with lowest dosages and work up...I'm allergic to some many, and often have the rare side affects...Another of those genetic issues...
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Avatar universal
Your doctor is supposed to order the tests, and you are not supposed to write them in.  However, in the spirit of doing whatever it takes to get what you want and need, many of us have resorted to "ordering" our own labs by crossing things out and writing things in!  I always ask to see my lab forms before I have blood drawn (my doctor uses electronic medical records, so no paper for me!), and I make sure everything is on there that "I" want to see.  After all, I'm paying for it!

I just saw something I missed up there.  Your FT3, FT4 and TSH were in range, and your doctor put you on 100 mcg of levo?  Is that correct?  Were you having hypo symptoms?  Did you go right from nothing to 100 mcg?  Do you have a goiter?

Yes, those are the TPOab and TGab, which are both within range, so you don't have Hashi's.  However, with your low TSH and relatively high FT3 and FT4, I still support Deb's idea of doing the TSI to rule out Grave's.  

My endo feels that stress is the number one factor in precipitating the onset of autoimmune disease or its worsening.  However, it almost sounds like your doctor who put you on the 100 mcg originally had no basis (either lab work or symptoms) for doing so.  Am I interpreting that correctly?  
Helpful - 0
1220571 tn?1274841195
Now, I did say, I may be a candidate for memory care, didn't I? I try to be humorous when I can, as I know it is health...I just looked again at my last lab...and there is a:
Thyroid Peroxidase (TPO) Ab it is 7 normal being 0-34
and a:
Antithyroglobulin Ab   <20  normal being 0-40

I can't thank you enough, this site is awesome. And so are all of you, who encourge, and give needed information to us nubies.

By the way, my new Dr. and psychiatrist both indicated that I am overmedicated. My counts were normal when the former Dr. put me on the 100MCG...he said, something to the affect to keep the goiter from growing. My new Dr. said he never would have put me on that medication....He wants to find out what is causing all of these symptoms...as he said, to my daughter, we know she had the thyroid, we know she has the heart, but I want to know what is causing all of these symptoms..as he said, I have so many issues, his impression as of lat weeks visit, he is leaning toward my have an autoimmune disease...my issues, chronic severe depression, which is now been changed to PTSD, IBS, Fibromyalgia, CFS, unexplained weight loss, unable to eat, without forcing myself., which started when my granddaughter was killed, then I spent 1 yr. as a caregive for a man on chemo for Leukemia, started a relationship with him....when they told him he is in remission...out came the booze and cigarettes...deal breakers for me, and I had to end it. (maybe I should not be writing this kind of stuff on here) That is when my health issues, really took a dive, if you will...
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1220571 tn?1274841195
No the order was not for "microsomal ab", but is for "microchondrial Ab". I was not aware that you can write in tests on the lab slip yourself. I assumed the Dr. had to do it. Or did I missunderstand what you were saying?
My new Dr. now has me on 44MCG of Levo. I've been at that level since Mar. 16th. after one mo. on the 100MCG, my previous Dr. dropped it to 88MCG  on Feb. 18th. When the pharmacist looked at it, he said, he sure didn't take you down much, at all.  When I saw the new Dr. he reduced it to 44MCG. He indicated that we have to work off of it slowly, if I understood correctly. I have a blood draw around the 17th. 10 days before I see him, again.
Going through all of this sure is no picnic...a seemingly ok day can turn into a miserable day, quickly.
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1220571 tn?1274841195
I will be the first to admit that I probably heard wrong what was said, about my metabolism...as I just looked this up...and you are right,,,,,,I cannot have slow metablism, not with my weight loss...BP, Pulse, etc...
When making reference to whatever the Psychiatrist and my former Dr. said, the commented that I have to start with a very low dose on all meds...actually my psychiatrist referres to me as the minimalist. So know, without a doubt that I missunderstand things and forget easily..especially since being ill. Many days I feel like I am ready for the memory care unit.
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1220571 tn?1274841195
Very good question, you are all giving me information that I did not know to ask about!
I will write these down and take them with me to my appointment.
I don't even see FREE T3 and FREE 4 Or TSI nor those above written by goolarra.
I will write all of these on my list of questions?
Interesting comment regard the low metabolism.
No where on any of my labs do I see any of the above mentioned tests...
Thank you, so much for sharing you wisdom and knowledge with me...
I just read thru my biopsy report..it says, in part.....No psammoma bodies are identified.
Hurthle cells with admixed Lymphocytes to suggest Hashimoto's thyroiditis are not identified. The findings are most consisten with nodular hyperplasia.
Clinical follow-up is recommened.
Thank you, again, so much for your comments.
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Avatar universal
I totally agree with Deb...make sure your doctor is ordering free T3 and free T4, not total T3 and total T4 (these are considered obsolete tests and pretty much a waste of money).  

Your doctor is ordering a lot of antibody tests, obviously looking for immune reaction.  He should also be ordering the thyroid antibodies, TPOab (thyroid peroxidase antibody), TGab (thyroglobulin antibody) and TSI (thyroid stimulating immunoglogulin), as Deb suggested.  The first two would indicated Hashi's and the last Grave's.

I think the most important thing you can do at the moment is test FT3 and FT4 and the three antibodies.  Your TT3 and TT4 are high, and your TSH is low, all indicating hypER.  However, you are also on 100 mcg of levo, so you might just be overmedicated.  If any of these tests isn't on the lab slip, write them in!  Sometimes TPOab is referred to as "microsomal ab" (is that what was ordered rather than "microchondrial" from your list above???).
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Avatar universal
Have you been tested for Graves Disease ? (TSI test)
And also why arent you being tested for FREE T3 and FREE T4 ?
The normal T's are of no value.
Also if you had a low metabolism, you wouldnt have lost the weight...you wouldve gained.
Helpful - 0
1220571 tn?1274841195
Thank you...there is no doubt in my mind that I am way over medicated, I have a slow metabolism, so have to start low and work up....
My symptoms, tired, I refer  to is as exhaustion..intestinal problems..horrible taste in my mouth, a grey coating on my tongue, sores on my mouth and in my mouth...cold, emotional, my BP and pulse are not right...as in my pulse will be 87-120 and BP within normal range, some of the time...oh and the hoarse voice, weight loss, very pale complexion, sometimes white sometimes greyish, often loss of appetite, indegestion,..No hand tremors, yet! My new Dr. has just ordered:
Anti DNA-DS
Anti microchondrial Ab
Anti SSa, SSb
Anti Am ab
Sedrate
Lyme Ab
CRP-cardiac
T3, T4
TSH 3rd generation. These will be drawn th. 18th. I see him the 27th.


My most recent labs, I was given on Tues. in his office. I realize that many of these test below are not related to the thyroid...my Dr. said he is leaning toward me having an auto immune disease...he said, we know you have the thyroid, and we know you have the heart, but neither of these are causing all of your symptoms...When I saw my Psychiatrist on Thurs. he said, he fells that when all is said, and done...he fells it will all be related to the thyroid. Both tell me I have to work off of the Levo. slowly, with my heart problem, to avoid a heart attack or stroke....Boy, when we are ill, we are at their mercy...My daughter has a saying, she said, Mom, why do you think they call it a practice, as in medical practice...
Celiacs was NEG though another part of it tested a weak positive..
Immunoglobulin A, Qn, serum is L
Eos is 8 H
Glucose serum is 104
eGfr is 51 L
Creatinine, Serum 1.04 H

Now for the thyroid:
TSH 0.011 (L) normal by my lab is 0.450-4.500
Vit D 70.1 normal being 32.0-100.0
Thyroxine (T4)  (H) 13.7 normal 4.5-12.0
Triiodothyronine (T3)  156  normal 71-180
I have 3 pages from the last blood work.
I don't even see a TPOab or TGab on my lab slip, possible tests that would have to be written in.
Thank you....
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Avatar universal
It sounds to me like you are overmedicated.  Symptoms are THE most important part of this disease.  After all, the object is to feel well.  Your doctor should be testing FT3 and FT4 as well as TSH.  Have you been tested for thyroid antibodies, TPOab and TGab?  What are your symptoms?  Do you have hand tremors?
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