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Old 02-10-2013, 09:32 AM   #1
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Unhappy Starting Fresh - looking at thyroid removal

Versus going through 50 plus pages of stories, I want to put mine out there. I have spent the past 20 years having nodules monitored, testes with biopsies, ultrasounds, etc. This started in 1993. By 2001, one side of my neck developed a goiter. I did not notice any thyroid disease side effects, but I had just been through a nasty made for TV movie, where I lost over 30 pounds, took care of 2 young children and worked a new job full time. I was too busy to be tired and I exercised regularly. I was fine, all my levels indicated I was normal.
Then in 1999, I went on a search for second opinons and someone that could tell me why I should put up with the unsightly goiter. I was starting to put weight on and still working out and keeping a fast paced life. I was tired. Docs said that my lifestyle would make anyone tired. I could'nt focus in meetings, I couldn't concentrate on reading material, I wondered if I was ADD...
Finally a radiaologist read an ultrasound and sat me down and said the nodule had caused the gland to increase by 2/3's in size and that was reason enough to remove it.
Thinking that the entire gland would come out, I was reassured that only one side would be removed and we would monitor my levels. I thought the entire right lobe came out, and found out, over 15 yrs. later, that only part of it came out and there were many other modules and the doctor was sorry I misunderstood that. MISUNDERSTOOD? I was TOLD the info I knew. I didn't make it up.
The doc was getting more and more extreme in behavior each time I saw him. I didn't feel good, ever, starting about 2006. He kept saying my levels were fine, he couldn't help me, but he wanted to see me now twice a year. In 2010, having just accepted that stuff in life was causing my moodiness, 40 pound weight gain, fatigue, tired feeling muscles, really brittle nails, really dry skin, sensitivity to cold, despite being menopausal, nope, no hot flashes and no night sweats ever, he felt nothing was wrong. He even, in 2010, was disgusted with me because I was reading Datis Kharrazian's "Why Do I STILL Have Thyroid Symptoms" book, he told me nothing was wrong and blood tests said so.

What blood test? The one I just had. I have not had one for a year, I said. He was so upset about the book that he misread his own records. I got a copy of all my records from them the next week and have moved on to a different endo.

I did not see an endo for 2 years. I now am seeing a new one, highly recommended in this area, who says that blood work still says I am fine but that she can feel how large the nodule is and it needs to come out because it's restricting my airway. She says it should come out. My question to her was, you say my levels are normal, but for whom? There is controversy on what "normal levels" are.

I am now concerned, having joint and soft tissues issues, working out is more difficult and I can' t just GO for it anymore, already 40 pounds + overweight, what will happn when they remove all my gland and put me on synthroid? I can't gain any more weight, I just cannot. I am now the size I was at full term pregnancy with my youngest and I find it disgusting. What will happen now?

 
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Old 02-10-2013, 01:46 PM   #2
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Re: Starting Fresh - looking at thyroid removal

You probably have had thyroid disease/hashimotos all these years. Why don't you post your blood results with the lab ranges here, and people can help you?

"Normal" for thyroid blood work is not like other "normal" blood work in ranges. My sister had a tsh over range, everything else at the low end of range, and then she found an endocrinologist that decided to try treatment and she was much better for it. Usually regular doctors, not endos. are better with this. Many doctors are obsessed with tsh.

You likely need thyroid meds.---You might need that thyroid out, but what I would do while figuring it out is ask the endo. for a trial of thyroid hormone at a decent dose to see if it shrinks your goiter. It is a good chance it won't, but it will help you start treatment. Also, if you get your thyroid out, you want a good doctor to help you manage your medication levels.

If you have a good "manager" that works with you until you feel right, not just watching ranges, you may even be better off than with your thyroid, as you are starting from "scratch"

You can post your tsh, free t4, free t3 and antibody levels here for people to help you with.

Last edited by Reece; 02-10-2013 at 01:53 PM.

 
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Old 02-10-2013, 02:48 PM   #3
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Re: Starting Fresh - looking at thyroid removal

Hey there, sorry for the issues that have brought you to the board but welcome!
I do not know much in the line of goiters as though I have nodules none are suspicious so I have not had reason to delve into it!
TSH for most healthy people is in the range of 1-1.4 (regardless of lab range used and this has changed)
Frees (T4/T3 and frees are best to go by) should be about mid of lab range or above
Have you had antibodies tested? You should.
As Reece says, post your labs, you can get a lot of help with that and research your choices before taking a big step.
Checking cortisol DHEA, iron vit D3 etc may be of help as if adrenals are stressed thyroxine will not work so well so adrenals should be sorted before if possible.

Thyroid hormones have good success is shrinking nodules. Not everyone does as well on thyroxine, quite a few people have needed the combos, armour is very popular. It is a combo of T4/T3. (Or a synthetic mix of thyroxine and T3)

If you get thyroid removed you will not be producing thyroid hormones and it can be easier to replace as there are generally no fluctuations to deal with but you will go fully hypo. Which is why you need the replacement to replace what your body can no longer do.

It sounds like you need to research good docs in your area, check at compounding pharmacies for those that prescribe natural dessicated hormones, these are generally more progressive in treating by frees, symptoms and are more open to viewing adrenal fatigue if it is present.
And keep reading and informing yourself as you will need to know all you can to understand your options. Good luck

 
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Old 02-11-2013, 06:42 AM   #4
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Re: Starting Fresh - looking at thyroid removal

I know the iron is fine, I take D3 supplements and a lot of others...I have been taking kelp tablets for a while as well. Cortisol DHEA...not familiar and will have to look up and into. Have a call in to the doc now to get the levels to post here. I have actually tried synthroid, in the past, and it did nothing at all for me or the nodules. Right now, it's the size I am concerned with here because it is most definitely in the way. I have wondered about Hashimotos. Thyroid issues run in my mother's family. She and 2 of her 4 siblings had surgery, but in the mid to late 60's, so they just took it all out back in those days. My mother has never had any issues with weight, but has had hair loss over the years. She says she never noticed a problem after her surgery. One Aunt had a goiter, sibling 4, but never had anything done about it. She was then in her 70's and felt no need to look into surgery. Mom has asked family, at reunions, who has had thyroid issues, trying to figure out where this is coming from, and it seems it has stayed just in her immediate family.
Thanks for the info. Researching further and will post levels soon.

 
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Old 02-11-2013, 09:52 AM   #5
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Re: Starting Fresh - looking at thyroid removal

I'm sorry that your ignorant doctors have kept you ill all these years. Keep pushing until you find not just treatment, but optimal treatment for your hypothyroidism.

The fact that you once tried Synthroid and it didn't help is meaningless. It likely wasn't at the right therapeutic dose. Or you might have needed T3 in addition to the T4-only Synthroid. You could completely recover with Synthroid if it were the right dose for you. Or a natural dessicated thyroid might be a better fit. It isn't just a matter of throwing a tiny prescribed bit of hormone at the problem. It has to be the right amount of hormone for your body's needs.

You may want to rethink the kelp tablets. A Hashimoto's ravaged gland can't make use of that extra iodine. Most Hashi's patients feel far worse when they take it. Hashi's isn't a matter of iodine shortage; it's often due to iodine overload.
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Old 02-11-2013, 01:49 PM   #6
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Re: Starting Fresh - looking at thyroid removal

Here is the thing....this doc and the past one are the most highly recommended endo's in my city. Richmond, VA. They have the top ratings.
I just got a call, Free T4 is 1.28, TSH is 1.1 and she said she never does a T3, "you don't do a T3, you never do a T3", she said. Also, those Jan readings were almost identical to the readings in 2010, according to her.

 
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Old 02-11-2013, 01:58 PM   #7
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Re: Starting Fresh - looking at thyroid removal

Hi fed up,
Endo's are not always the best people for thyroid. If you have one who is not willing to test one of the most important hormones (FT3)which is the hormone available for your cells to use after conversion from T4.
Sometimes it is better to have a doc who has spent years dealing with thyroid or a naturopath who prescribes natural dessicated.
My doc is a general GP who just got tired of the mistreatment of his patients by specialists, and educated himself further and takes a more holistic approach. When my meds weren't working he tested adrenals and also RT3, both were causing issues and now they are being treated.

Maybe research good thyroid docs or look at Mary shomons thyroid info site for recommended thyroid docs in your area. It sounds like you need to!

 
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Old 02-11-2013, 02:03 PM   #8
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Re: Starting Fresh - looking at thyroid removal

What is your blood calcium?

 
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Old 02-12-2013, 04:53 AM   #9
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Re: Starting Fresh - looking at thyroid removal

I have absolutely no idea what my blood calcium is. Once upon a time, I recall that docs sent out your blood work report that had details of what was found. No more. Docs here now have their nurse call to simply say, Your bloodwork is fine, you are functioning normally. Asking the questions is new because I don't know what to ask for really.

 
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Old 02-12-2013, 05:25 AM   #10
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Re: Starting Fresh - looking at thyroid removal

Early morning call from Endo just now. 2008 ultrasound compared to last month's shows nodules AND the gland itself are much larger. Reason to remove, if I want. Gland, she says, is functioning normally, so no need for any other testing. She asked me what I wanted to do next. I thought that was her job.
She says if I want it removed, I need a surgical consult and she needs to know when surgery is so she can get me started replacement hormone first.

 
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Old 02-12-2013, 08:45 AM   #11
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Re: Starting Fresh - looking at thyroid removal

Quote:
Originally Posted by fedup20 View Post
Once upon a time, I recall that docs sent out your blood work report that had details of what was found. No more. Docs here now have their nurse call to simply say, Your bloodwork is fine, you are functioning normally. Asking the questions is new because I don't know what to ask for really.
Federal law guarantees you a right to a written copy of your medical records, including labwork. If the office staff refuses to photocopy your lab report, just whisper "HIPAA" in their stubborn little ear. They'll really hop to it, wait and see.

You can learn what to ask, just as those here who are being optimally treated have learned. Start with a copy of Thyroid for Dummies by Dr. Alan Rubin. It contains all the basics of thyroid function/dysfunction.

As Surfing mentioned, endos are the absolute pits at treatment of hypothyroidism. In the 10 years I've been a member here, I can count on two hands the number of good ones. It's doubtful that the "highly recommended" endos you've seen are good at much besides diabetes. You can do better on that count.

It's okay to be defensive - to a point - but it's better to be pro-active to get what you want. In the very beginning of my thyroid adventure, I tried fighting with my then-primary MD about my self-diagnosis. I had to self-refer to an endo [ um hum LOL ] who, to her credit, provided the diagnosis that the primary denied. But her method of treatment was a disaster. I then had to move on to a holistic MD who provides me to this day with optimal thyroid replacement.

That's my advice. Channel that aggravation and anger into a productive search for a better thyroid doc. They're out there. Try asking pharmacists around your area for names of MDs who prescribe Armour or Cytomel. Ones who do generally provide better thyroid care than ones who won't. (Endos rarely Rx these drugs, BTW.)
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Last edited by midwest1; 02-12-2013 at 08:46 AM.

 
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Old 02-12-2013, 02:14 PM   #12
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Re: Starting Fresh - looking at thyroid removal

So there is no defensiveness and I am not angry. I don't have enough hours in the day for anger. LOLOLOL I am just frustrated and looking for responses to assist me in research. Thanks, everyone seems to be doing just that.

Found 3 potential docs in this area so now phone calls will be made. I definitely want another opinion from one of them before doing all this. This is a small area and good docs are hard to find. Took 4 turns at pediatricians in the 80's and finding a good GP or internist is horrible. So this is, hopefully, a reliable resource for docs.

 
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