# New here--Frustrated that no doctor can figure this out!



## oldrose (Sep 21, 2014)

Hello everyone,

I have been lurking for a few weeks. I have been trying to research as much as possible. At this point, I am about to throw in the towel, but maybe someone here will know what is going on with me. Recently, I had a partial hysterectomy. I kept ovaries. I had a smooth surgery and recovery. About three months later, I started having some anxiety. I went on vacation and when I returned, I had a slew of symptoms: Exhaustion, headache, flushes of heat, and buzzing all over. This would happen usually at the end of a very active day. Then I would relax and for the next few days would be fine. After a month of this off and on, I went to my family doctor. He tested me for everything and put me on doxycycline because I mentioned that a friend of mine had Lyme Disease and maybe that was it.

It only got worse. Soon I was having extreme insomnia and anxiety in the middle of the night, early waking, or simply not able to go back to sleep. The buzzing all over was the most disturbing. I had pressure in my head, headache, neck pain. I had sudden blurry vision. I had pains everywhere some days better than others. Some nights I would sleep fine, others would be impossible. I got my tests back and my TSH was 11.42. I had been, according to my endocrinologist, "borderline hypo" for a year or so, so I didn't think much of it. But I went to him and asked if these symptoms could be related. He said no. I left with Synthroid 75 mcg.

I finally saw a Lyme specialist (LLMD) and he said that he thought I had Lyme, but that I was probably having a reaction to the Doxy that was causing most of my symptoms. So, I stopped the doxy, started the synthroid, and started eating non-gluten, sugar, milk, caffeine, alcohol. I was put on some neuropathy meds (gabapentin and trileptal) and a ton of supplements. I started to feel so much better!

The blood test came back with Hashimoto's: Thyroglobulin antibody 4.8 (ref range 0-0.9) and TPO 205 (0-34). I also have Ebstein Barr Virus IgGs- past infection. I also had low vitamin D, my complement c4a came back as quite high. I found out that I have had Hashis for years, but my endocrinologist never told me (I got his records)!

I went to a bio-hormone replacement doc just this week to treat the thyroid further (since I ditched my other doc) and she said I was also post-menopausal from the surgery. Low estrogen, progesterone, and testosterone. I explained that I kept my ovaries and that they told me that I wouldn't go into menopause. She said that most everyone goes into menopause after the surgery. So I called the surgeon. She reviewed the blood work and said that my levels look fine. My estrogen are low normal, Progesterone low normal, and testosterone completely normal. She says I am peri menopausal and that maybe it is just starting to happen for me, but probably not causing my symptoms. They recommended not treating the hormones until the thyroid is regulated.

So now I still don't know what is going on with me! Could all of my symptoms, my SUDDEN symptoms just be that my thyroid finally had it after all of this time? After the surgery? Could these weird symptoms be hashi? This week I upped the synthroid to 88 mcg and I feel almost normal! But, I have to wean off of the neuropathy meds. If I wean off of them, I am afraid all of the horrific symptoms are going to come back. The Lyme doctor here says that he thinks I have Lyme (and that is based on a low CD 57). He is taunting me by daring me to come off of the meds and then come back and tell him he is right. But I have a top Lyme doctor in the country that says that he is not convinced I have Lyme (he saw all of my blood work).

Does anybody have any ideas? Why can't I find a doctor that knows what is wrong with me??

I would really appreciate any words of encouragement! Thank you!!!


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## joplin1975 (Jul 21, 2011)

Have you ever had your free t4 and free t3 run? Have you had an ultrasound of your thyroid?

Folks on this board (myself included) don't put a ton of stock in TSH results, but I think most of us would say a TSH of over 11 is way beyond "borderline" hypothyroid.

It also sounds like there are a lot of moving pieces here and that makes it really hard to sort out. Since the thyroid is the master gland, many people try to focus on getting optimal and stable thyroid labs first and move on to other hormones and/or issues.


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## Lovlkn (Dec 20, 2009)

Welcome to the board.

You sure to have alot going on with you. I had a similar experience prior to my Graves diagnosis. Your situation does certainly point toward hashimoto's but one test you need to be very concerned about is



> Thyroglobulin antibody 4.8 (ref range 0-0.9)


You need insist they do a ultrasound of your thyroid and see if there are nodules.

Your initial TSH was very high - not mild in any sense. You need to re-test in 6 weeks after starting your medication and insist they run the FT-4 and FT-3 along with the TSH at your next visit.

FYI, I went through a menopause after an endometrial ablation procedure - about 3 months after the procedure. I think once you start taking out female parts or ablating them, anything is possible.


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## oldrose (Sep 21, 2014)

Thanks for your messages. I really appreciate having your knowledge in this area. Ok, a little more info. I was first diagnosed Graves Disease in 2006 after the birth of my son (6 months after the birth). Doctor wanted to do radioactive iodine, but I was worried about it being possibly post partum thyroiditis. He said that wasn't possible. But I waited a little while and during that time he put me on meds. I went into remission a year later- he was shocked. Then, after the birth of my second child in 2010, he told me that I went borderline hypo. Turns out now that I got the records, that I had antibodies back then, but I didn't know it. He has been telling me my TSH, and it has been climbing, but I never knew then to look at all of the tests. I was pretty asymptomatic, so I didn't worry about the high TSH at all. Well, I guess now looking back- I had a hard time losing weight, sluggish, etc. Joplin1975--The last test that I had with a full picture was Dec 2013. This is what it says. T3 uptake 30 (22-35), T3 Free 3.2 (2.3-4.2), T4 7.0 (4.5-12) Free T4 2.1 (1.4-3.8) and TSH 6.35. I was told that these are old ways to test, so sorry if this is not clear.

The next thing I know, it is August and my TSH is 11.42, but he didn't test any of the others. Put me on synthroid 75 mcg.

Went to a new doctor. This was after taking synthroid for 6 weeks: TSH 1.43 (.35-4.94), Free T3 2.86 (1.71-3.71), Free T4 1.17 (.70-1.48). She said she would like to see me a little bit lower, so my dose was increased to 88 mcg and I just started taking this dose three days ago. I feel much better, but still have some symptoms. I hear it can take about 3 months to fully absorb into your system, right?

Unfortunately, all of this is timed so unfortunately! I wish that my doctor had talked to me about the antibodies earlier, especially before the surgery, so that I could have been able to at least know which one was causing my symptoms. My surgeon said that I may be experiencing a few of my symptoms from the low side of normal estrogen. What is weird is that I talked to a girl that had her ovaries removed and she had ALL of my symptoms, so makes me wonder... (Lovlkn)...!

I am seeing a new endocrinologist in a week or so (it takes forever to get in)... so will have a re-test and ultrasound. I really appreciate having you all.


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## Andros (Aug 26, 2009)

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/
(Copy and paste into your browser)

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

Welcome to the board! I agree with the others. FREE T3 and FREE T4 plus and ultra-sound.

All 3 of the above are very very important!


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## joplin1975 (Jul 21, 2011)

You labs are decent, but could stand for some improvement. So i think the increase to 88mcgs was a good one. It can take up to eight weeks to feel the full effects -- thyroid labs move at a snail's pace. But I would reassess at eight weeks for sure.

I also agree that an ultrasound is imperative. Have you had your antibodies tested?


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## Whisperwindkat (Jul 31, 2014)

the bio identical doc sounds like they know their stuff. Low progesterone can feel just like thyroid and if you have both going on then you really feel lousy. Get the frees tested and try some bio-identical hormones. Bio-identical progesterone made a huge difference for me. Now, that I am going through the ringer withmy thyroid gain I think the balance in female hormones is the only reason I am still functioning.


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## oldrose (Sep 21, 2014)

Joplin1975--Thank you so much. I am hoping that since I am feeling better and better, that this will be a big piece of the puzzle for my symptoms. The last antibody test I had was right before I started the synthroid. Thyroglobulin antibody 4.8 (ref range 0-0.9) and TPO 205 (0-34). I had an ultrasound, but that was about 2 years ago. I can post that if it helps with the whole picture. I will insist on another when I go to the new endocrinologist. From what I understand, I want my free T3 and free T4 to be at the bottom third of the range, is that right? I SO agree with you to retest at 8 weeks. Should that be 8 weeks from the increased dose then? I am about 7 weeks from the initial dose now. I see the new endo next week, so he probably will run labs anyway.

Whisperwindkat- Thanks! I thought she was great, but now am having reservations since my surgeon basically said she was wrong and "was probably trying to sell me something." It helps to hear that you have the same sort of experience.On the other hand, the bio-identical hormone doc said that gynecologists don't know all that much about hormones. I hate not knowing which direction to go in. It sure would make complete sense as to why I started having anxiety soon after the surgery. My TSH was rising and rising since last year. I have had the antibodies since 2006, but my doctor diagnosed me Graves (I guess because my TSH was so low?) and then in remission and then to hypo, but never told me about the antibodies. I only found out by getting the records and saw that I had been tested for the antibodies.

So if I just had surgery, with a TSH rising, antibodies present, and all my hormones being messed up, this should explain a sudden crash with all of these symptoms, right? I am just worried about the sudden presentation more than anything. Does that happen? Does your body just start to shut down if it is screaming at you for treatment? For the month I was trying to figure everything out, more and more symptoms presented. It was really so intense that I am worried that it is more than hormones, but if you look at my antibodies and the fact that I haven't treated this thyroid for years, would that be reason for a sudden miriad of symptoms?

Thanks for your advice. I really appreciate it!


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## Lovlkn (Dec 20, 2009)

> From what I understand, I want my free T3 and free T4 to be at the bottom third of the range, is that right?


Nope - you have it reversed. You want your Free's to be toward 3/4 of the top of range.



> Thyroglobulin antibody 4.8 (ref range 0-0.9)


You need to insist they do another sonogram of your thyroid. Post what your last results were please.


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## oldrose (Sep 21, 2014)

Sorry I haven't been here. Been trying to cope with symptoms and keep up with all of the medical stuff. OK, here was my last ultrasound June 2013: It was of the medial and lateral neck. Bilateral lobes have moderate heterogenous echogenicity. Right lobe 1.7X1.4X5.3 cm. Left lobe 1.1X1.4X3.5 cm. Impression: Thyroid is overall normal size, but hetergenous. She has increased vascularity throughout. This appearance is common with an autoimmune thyroid disease. There are no worrisome features.

OK, so here is my question. I have all of my labs back to my first child. When I was 6 months post partum, I was diagnosed with Graves. But my labs show that TSI was in range 112 (range 125 or less). My TPO antibodies, however were high at 113. I can't read the range.

As the years passed, I went into "remission" and then after second child in 2010, had a high TSI 289. I had a high TPO (illegible) in 2013. TSI went back to normal in 2013.

My TSH continued to climb and climb until my body crashed (read symptoms above) with a TSH 11.42. At that time, my TPO 205 (0-34) and Thyroglobulin antibody 4.8 (0-0.9). Started Synthroid 75 mcg.

6 weeks later, went to a hormone doc that tested again, and my

TSH 1.43 (0.35-4.94)

Free T3 2.86 (1.71-3.71)

Free T4 1.17 (0.70-1.48)

TPO 210 (0-34)

She increased my Synthroid to 88 mcg. I then went to a new endocrinologist. In the short period of time I was on 88 mcg, I started having anxiety and palpitations. He told me to decrease back to 75 mcg. I have remained on that dose. I have been on Synthroid a total of 11 weeks. I am still feeling a little bit of buzzing in my feet, and aches in my legs, sometimes back and neck pain, exhaustion. I have moments of a sort of dizziness when I get over fatigued, and sometimes I have sort of chills on my legs. I just don't know whether I am on the right medication. My body was slammed, so maybe it takes a while for my body to heal? As a reminder, I also had the partial hysterectomy, so other hormones may be playing a part as well. Thanks for any interpretations. The new endo doesn't want to see me again until January and he didn't even do any labs for the last visit. I just feel like it is a long time to wait while I am trying to regulate. Thanks!!!


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## joplin1975 (Jul 21, 2011)

To be honest, my feeling is that once you have TSI in your system, all bets are off...and you likely won't be able to stabilize on any dose. I don't mean to be so pessimistic, but it will be exceptionally difficult to have any qualiy of life with that particular antibody. You doctor should be testing you every six to eight weeks until you are stable...waiting until January is on the longer side of things, but no labs is really really worrisome. How do you feel about getting a second opinion?


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## Andros (Aug 26, 2009)

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
(Copy and paste into your browser)

Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/
(Copy and paste into your browser)

Please read the enclosed info.

Has your doctor offered the option of ablation? It might be a good idea!

I personally don't like the idea of "vascualar" and the presence of Thyroglobulin Ab. Have you had FNA and Thryoglobulin and Thyroglobulin Ab lab tests recently?

You may benefit by seeing an ENT about all of this. Humble opinion.

Hugs,


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## oldrose (Sep 21, 2014)

Thank you both. So, am I to understand that since I have had both antibodies high at one time or another, that I must have drastic swings between Hyper and Hypo? What I don't understand in all of this is that this goes back to 2006. I really had no symptoms at all until this past July. And then my entire body crashed and I was terrified with extreme symptoms. Why suddenly? Did my body just have it after all of this, or maybe because of the surgery at end March? My other hormones are very low and my surgeon said they will most likely come back up. But is there something else underlying or is it because I have both types of antibodies that just makes my body completely messed up?

Unfortunately, that was my THIRD opinion. I cannot find a doctor here that knows anything about this. One was even on the list here. I am terrified that no one seems to know how to treat me. My new doctor did not mention ablation, and didn't even look at my labs. He did a full body exam, and said that my thyroid was "unremarkable." He said he didn't want to do an ultrasound because it only "finds things that scares people unnecessarily." I have only had the antibodies checked, not the thyroglobulin or FNA.

I do have an ENT that I have been to several times for other issues. Perhaps that is my best bet? I feel like such a rare case that I am trying to find an endocrinologist that knows their stuff. Off to research docs....

Thank you so much for the info!!!


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## oldrose (Sep 21, 2014)

OH, another question. Are you suggesting the possibility of removing the thyroid? Would that at least help the hyper swings? And if so, which method? Radioactive iodine or surgery? I am a professional flutist and the surgery scares me, especially considering the possible damage to vocal cords, etc.


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## joplin1975 (Jul 21, 2011)

oldrose said:


> OH, another question. Are you suggesting the possibility of removing the thyroid? Would that at least help the hyper swings? And if so, which method? Radioactive iodine or surgery? I am a professional flutist and the surgery scares me, especially considering the possible damage to vocal cords, etc.


Yes! 

I am an advocate of surgery. With RAI, it's a bit of a guessing game...how big of a dose and then did that dose really kill off everything? Sometimes you have to go back for repeat doses, all the while you are experiencing the up and down swings. Not fun!

A highly experienced surgeon can talk you through the risks. If you get the surgery now, rather than when your thyroid becomes more inflamed, the risks are minimized. The more "messy" the thyroid, they more risks. I was yelling at my dog two days after surgery.


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## oldrose (Sep 21, 2014)

Joplin1975- LOL, don't yell at that pup!  Did you read the post above that last one? I am wondering about these sudden symptoms.


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## Andros (Aug 26, 2009)

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
(Copy and paste into your browser)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

TBG (thyroxine binding globulin) up, hypo............down, hyper
http://www.nlm.nih.gov/medlineplus/ency/article/003374.htm
(Copy and paste into your browser)

TBII
http://www.ncbi.nlm.nih.gov/pubmed/9364248
http://en.wikipedia.org/wiki/Anti-thyroid_autoantibodies

Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/
(Copy and paste into your browser)

Do see your ENT. You already have a good history w/this doctor and that is a plus!

I am always amazed at how some doctors can do a body exam and pronounce that they did not find anything remarkable w/the thyroid! Is he Darth Vader w/x-ray eyes. You already know from previous ultra-sound that you do not have a healthy thyroid. Don't get me started.

Your numbers are erratic and so are your symptoms because of binding, blocking and stimulating antibodies and immunoglobulins all of which I will list above for you.

See that ENT. I will say a prayer for you!


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## joplin1975 (Jul 21, 2011)

oldrose said:


> Joplin1975- LOL, don't yell at that pup!  Did you read the post above that last one? I am wondering about these sudden symptoms.


Trust me, she's hell on paws. 

Yes, I did and it's just so hard to say. The antibodies do such a weird thing to our bodies. If I could answer the "why," I' probably be making a heck of a lot more money than I am now.


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## oldrose (Sep 21, 2014)

Thank you, Andros. I will read all of this when I get the kids in bed and I really appreciate the prayer! I really need it right now. Joplin1975- maybe you should go back to become a thyroid doc. We surely need a good one. But you must move near me! OK, I re-visited my calendar of symptoms and I guess it wasn't SO sudden. I mean, I was already over TSH 5 by Dec. March 17 I had the hysterectomy. By June I was experiencing beginning of panic attacks. That I found weird, but I didn't put two and two together. By beginning of July I had the exhaustion, headache, muscle aches at the end of a long day. And only once every several days. Usually after bringing the kids to the pool. Possible chlorine connection? I don't know. Then it only got severely bad when I was put on Doxycycline. My doctor said that sometimes antibiotics interfere with thyroid hormone. Not only that, but I had huge side effects to the doxy. So probably a lot of it was just that, and all the while not treating the thyroid! Today I scheduled an appointment with a new doctor on Wednesday morning. I will let you know how it goes. It is a female wellness practice, bio-identical hormone doctors, and I guess I would feel more comfortable with an endo, but that is all I can find for now. Wish me luck! THANK YOU THANK YOU THANK YOU for your knowledge in this area.


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