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6/9/13 8:54 P

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Yes, one of the things I liked about this endo is he was willing to let me try the antithyroid meds even if the scan did not confirm it. We discussed that possibility prior to the scan.

I also talked to the pharmacist about Methimazole and he said it is safe. There is a rare instance of white cell suppression, so if I have any fever or persistent sore throat, I am instructed to get blood work done immediately.

I just realized that you were probably assuming that I am in NY. No, I am in Texas.

Yes, the cytokine research is fascinating. I've had the good fortune to meet some pretty interesting people from Russian scientists to genetic microbiologists.

MZZCHIEF's Photo MZZCHIEF Posts: 9,268
6/9/13 5:20 P

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Sounds good Ny!

Based on what you told us in your first post, anti-thyroid medication seemed to be the most sensible course of action... good to know your scan confirmed it!

My understanding is that Methimazole is the medication that has the least side effects for the greatest amount of people.

Glad you're saving money on Labs. NY is one of the States the restricts patients ordering labs without the consent of a prescribing physician.

Sounds like you have a wonderful diet and have checked all the usual suspects.

What an annoyance to be allergic to garlic and onions! Yes... they are fairly ubiquitous in any savory food. Since I have to watch gluten, I've got an idea what that's like for you... its... pesky!

So cool that your husband does cytokine research. I definitely got into the wrong field in college, too late for me now. You two must have some fascinating conversations on a variety of health oriented, medical topics.

Best of luck with all of this.
: )
Mzzchief





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6/9/13 4:14 P

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Finally getting a chance to post an update. First I'd like to say that I did go back to my spark page and turn on Recent Message Board Posts. I have kept all my posts on this thread though, so it's pretty much the whole story. Also, I have not forgotten your request for more information on the antivenom post, Mzzchief, but have not had time. I will get to that once I things settle down.

The endo once again impressed me. He had the results from the scan on Thursday afternoon after my last scan that morning and called me to go over. I did not have to make an appointment with him to go over the results, which meant not having to pay for a doctor visit. The results from the scan showed "diffuse uptake" rather than hot and warm nodules as he expected and he was rather surprised. Based on that, he started me on Methimazole. He also suggested that I go to a local lab for the blood tests at the end of July and bring them to him. This once again means a savings to me as my insurance pays for the local labs at a very low rate and do not have to pay the charge at his office. He feels that the anti-thyroid meds are my best bet right now as there is a 30% chance of remission. The chance of remission goes up considerably if the thyroid is only slightly enlarged (as mine is) and treatment lasts 1-2 years. The chance of remission is much less if the treatment is for only 6-9 months. After that if my levels remain normal for at least 6 months, there is an 90% chance that recurrence will not happen.

The interesting thing to me is that while my blood work indicates that it is not Graves (T3 is elevated rather than T4 and negative for thyroid antibodies), my radioactive iodine uptake scan is more in line with Graves than with Toxic Multinodular Goiter.

Here are a few links:

www.mythyroid.com/medicationshyper.h
tm
l


www.uptodate.com/contents/antithyroi
d-
drugs-beyond-the-basics?source=see_link


http://www.uptodate.com/contents/hyperth
yroidism-overactive-thyroid-beyond-the
-basics?source=see_link

To answer some of your other questions Mzzchief:
My vitamin D levels have been checked for several years and are fine.

I have not looked into vitamin k2, silica, or retinol, but will research.

I have taken a calcium supplement with boron for a number of years.

Yes, I do usually get adequate dietary calcium, protein and probiotics. I normally cook primarily lean proteins, lots of vegetables, whole grains along and try to have greek yogurt (active cultures) at least once a day.

I have been tested for food allergies and am allergic to garlic. If you ever look at food ingredients you will see that almost everything has some sort of garlic or "natural flavorings" which is usually either garlic, onion or both. This requires me to stay away from processed foods as much as possible.

My husband's company where I also work is involved in quite a bit of medical research involving pro-inflammatory cytokines, so I am quite familiar with damage that inflammation can do. I am also a firm believer that with proper nutrition and exercise the body has a wonderful ability to heal itself without medication. However, I also know that the body's immune system can get out of whack and do more damage than the disease it is trying to fight. I am also a big believer in getting as much nutrition from whole foods and only supplementing as little as possible.




MZZCHIEF's Photo MZZCHIEF Posts: 9,268
6/6/13 10:52 A

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Hi Ny!

I tried to go back and review your other posts before responding, but was unable to since you don't have the "Recent Messages Board Posts" tab enabled on your Sparkpage.( I do remember your post on anti-venom.) So I will base my comments on what you've told us here, which is that you have mild hyperthyroidism with osteoporosis.

Great that you've found a doctor that you feel comfortable with.

In all fairness, my own bias is towards balancing the body and keeping our thyroids, with surgery and RAI as a last resort. Simply because in its initial stages, before things really go off the tracks and into thyrotoxicosis, mild hyperthyroidism can go into remission.

With regard to the osteoporosis, have you tried vitamin k2, silica,retinol, vitamin C and boron for the osteoporosis in addition to having your vitamin D levels checked?
Do you get adequate dietary calcium?
What about probiotics like milk kefir to establish a bone friendly gut biome?
Avoidance of gluten and or testing for allergies to common foods?
Nutritional therapies to heal your gut and reduce inflammation through out your body?
Are you getting the RDA for iodine and selenium?
Are you getting adequate protein?

What I'm reading is that your endo has painted three scenarios here from which to choose. I'm listing them in descending order from his favorite to his least:

One, he removes your thyroid with surgery, follows with RAI and has you on replacement thyroid hormone for the remainder. After which you will be given osteoporosis meds "if" the thyroid treatment was effective. Meaning his prognostication is that restoring you to normal levels of thyroid hormone provided by replacement hormone, could possibly re-calcify your bones without any additional intervention. And if it doesn't then he'll start medication for osteoporosis.

Two, put you on anti-thyroid meds which he prefers not to do, since they have more side effects than thyroid medication.

Three, continue to leave you untreated for mild hyperthyroidism, allow the bone loss to continue. His least favorite option, since he faulted past doctors for doing so.

I'd like to present a fourth, for your consideration.
This is to try nutritional therapies to reduce inflammation in your body, supplement the necessary nutrients, as hyperthyroid disease is often not a constant and yours is mild.

There are instances where it can go into remission with proper hormone balancing, nutritional counseling.
The trick of course, is finding a doctor whose practice includes these modalities.


Does your endo offer holistic re-balancing therapy, prior to surgery and RAI?
Because if he does not, then you're not being presented with the full range of options.

Removing your thyroid is a permanent decision, and its clear where your endo's bias lays.

There's no one right answer for everyone... you'll have to be the one to make that call.

emoticon
: )
Mzzchief



Edited by: MZZCHIEF at: 6/6/2013 (10:53)
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6/6/13 9:05 A

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Hi everyone. I kind of dropped off suddenly there for a bit. It's just been crazy chaotic and stressful and I have not had time to get on the computer. While things have not really slowed down they have somewhat settled down to the point I can at least post a follow up.

I made an appointment with an endo and brought all my lab work from past years including all blood work, bone density scans and thyroid ultrasound. After examining me and reviewing my lab work, he said he didn't want to say anything bad about my previous doctors, but in his opinion I should have been treated for hyperthyroidism in 2008. He felt that the untreated hyperthyroidism is why I now have osteoporosis and even though I do not have severe symptoms, it needs to be treated for my bones before they get any worse. He said that the hyperthyroidism has been chipping at my bones all this time and that unless that is taken care of, no amount of calcium supplements or osteoporosis meds will be effective. His plan is to treat the thyroid and monitor bone density for about a year before trying any type of osteoporosis meds to determine if the thyroid treatment was effective.

I went yesterday for the radioactive iodine uptake scan and will go back this morning for the final scan. I'll make an appointment with the endo to review the results and discuss treatment options.

I really liked this endo. He took as much time as I needed to make sure I understood everything that was going on and answered all my questions in a way that was very easy to understand. He was also not pushy in the least and said the method of treatment (surgery to remove the thyroid, RIA or anti-thyroid meds) would be entirely up to me. He did however, say that if I ended up taking medication for the rest of my life, he would prefer it be the thyroid meds rather than the anti-thyroid meds because thyroid meds have less side effects. He was open to me trying the anti-thyroid meds for a couple years first to see if there is a chance that it corrects itself to the point that I no longer need the meds, although he does not believe that will happen.

On a side note I would like to add that after researching the radioactive iodine uptake scan, I found that estrogen, progesterone and antihistamines will interfere with the scan. I discussed this with the radiologist when I made the appointment for the scan and his suggestion was to go off of all of them for a week prior to the scan. The hormones I understand, but I am not sure why antihistamines would be an issue. I have that on my list to research just for curiosity sake.

The end note to all of this is WE MUST ALL BE RESPONSIBLE FOR OUR OWN HEALTH. Do not rely on your doctor to know everything. Research, research, research and then ask questions until you are satisfied with the answer. If you are not satisfied, get another opinion.

MZZCHIEF's Photo MZZCHIEF Posts: 9,268
4/18/13 1:57 P

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That sounds like a good fit for you in line with your intentions!

Everyone has to do what they feel is best for them, after doing the research and informing themselves. Sticking with a doctor that you don't have faith in is a decidedly bad idea.

Good to hear you have made up your mind!

: )
Mzzchief



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4/18/13 1:39 P

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Hi all! Thanks for the feed back.

This doctor is a GP not an endo. No, he made no recommendations on exercise or diet. The only supplements he has suggested are calcium, vitamin D and fish oil, but those were due to osteoporosis and cholesterol. My blood work on thyroid has been trending this direction for a number of years even when my female hormones were fine.

While I like and respect this doctor, I do not feel that this is his area of expertise. Since my blood work has trended this direction, I can be fairly sure it is going to continue trending this same direction. I think I would feel more comfortable if I talked with someone who is directly in this field. I am not eager to go on medication or to have a radioactive uptake test, but would like to make sure that I do not just ignore it until there is a more serious issue. Thankfully, my insurance is such that I can make an appointment with an endocrinologist directly. I am now researching the endocrinologists in my area that take my insurance to see which one to make an appointment with. If the endo feels there is no need to do anything more at this time as well, I think I will feel more comfortable with the decision.




MZZCHIEF's Photo MZZCHIEF Posts: 9,268
4/18/13 11:21 A

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Hey NY!

Yes, from what you described you have toxic multinodular goiter causing hyperthyroidism... when your thyroid grows and creates cells that are non-responsive to TSH.

I think you have some valid questions here.
Summarizing from your letter:
* What indications on the sonagram suggest my nodules are warm?
* What patient/clinic experience have you had that leads you to believe that antit-hyroid meds don't work?
* Why do you think I'm not an appropriate candidate for them? (I think you know his answer... he didn't see tremors, but I'd ask)

The only one that can answer these questions is your doctor.

My impression is that your doctor is conservative, relying more on his experience than on testing... testing that would expose you to a radioactive substance (iodine uptake).

If I'm not mistake your doctor has tried to balance your thyroid with female hormones, since you are in that time of every woman's life when they go wonky and take the thyroid along with it.
What other supplements has he given you?
Has he made any suggestions as to diet or exercise?

Based on what you've said here and in your blog, it sounds to me like your doc doesn't want to get you started on antithyroid drugs until you've got the female hormones balanced, after which the thyroid may self correct. In his opinion your symptoms do not warrant exposure to radioactive iodine because he's seen enough on the ultrasound to know that your nodules are warm.

But I am guessing here. If you want the answer, you'll have to ask him.
If his answers don't satisfy you, if you find you want to get a radioactive uptake test and take medications, I'd tell him that.

Its your body, so its your call.


: )
Mzzchief



New decade. Big world.
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4/18/13 11:17 A

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Is this just your GP or family doctor?

If so, definitely try and get an appointment with an endocrinologist, and if that was an endo, get a second opinion. It certainly doesn't hurt.

And I think you're right - that the only way to tell if a nodule is "hot" or not is by doing the radioactive iodine uptake test... that's where the term "hot" comes from! Radioactivity! The sonogram can show the shape and size, and is a great and noninvasive way to monitor physical changes.

If I choose to not do anything differently today, tomorrow is going to be exactly the same as yesterday.

"Shoot for the moon. Even if you miss, you’ll land among the stars!" ~ Les Brown


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4/18/13 7:46 A

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You may want to get a second opinion or even fire you present doctor.

Jane



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4/17/13 7:10 P

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I went to the doctor today to discuss the results of my thyroid scan and am even more confused now than I was before.

To recap: TSH less than .006 range 0.450 - 4.500, T3 5.0 range 2.0 - 4.4, T4 was within range at 1.38 range 0.82-1.77. This is a decrease in T3 and an increase in both T3 and T4 from the tests that were done 5 months previous which were also out of range. Sonogram showed nodules on both lobes with being diffusely heterogeneous and hypervascular with the nodules not well-defined and the right lobe having at least 5 well-circumscribed nodules. I was tested for thyroid antibodies and the test was negative. From my research, this would show toxic multi-nodular goiter causing hyperthyroidism (not autoimmune).

The reason I am confused now is my doctor totally blew it off. He said my nodules are warm and not cold so it could not be cancer and there was no reason to treat it as the anti-thyroid medications do not work. (I have not seen anything in my research that indicates sonograms can tell if a nodule is hot or cold. A thyroid scan using radioactive iodine would be required I believe.) He had me hold out my hand and said I don't have tremors and that if I had tremors and my hair was falling out then he would consider treating it. When I told him my hair is falling out he just said that he doubts that is from my thyroid. His plan is to just do another thyroid panel in a year.

Granted I do not have major symptoms other than cannot stand to be hot, constantly hungry and have to eat major amounts before gaining, hair loss, heart rate shoots up very quickly when exercising, not as mentally sharp as I used to be, fatigue, and things like that. All things that I have attributed to other things in the past including just plain getting older. What is your opinion? Blow it off and do another thyroid panel next year or go ahead and see if I can get an appointment with an endocrinologist?


MZZCHIEF's Photo MZZCHIEF Posts: 9,268
4/9/13 10:44 A

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Good morning ladies!

Sorry to hear about the osteoporosis in both hips. UGH!
Sounds like to good idea to wait until you get the thyroid sorted out.
A vitamin that is often overlooked is vitamin K2 for bone health.
Its not easy to get from diet which is why I supplement it.

Here's some info on that for your consideration:
www.vitamindcouncil.org/about-vitami
n-
d/vitamin-d-cofactors/


Do you take a fish oil that is high in DHA and EPA?
This tends to reduce triglycerides. There's a pharmaceutical named Lovaza that is esterified fish oils that was developed for this purpose, but you can get similar results with a quality OTC oil.

I was thinking of you this morning and wanted to bring up the topic of thyroid storm since this is a problem that can come on suddenly to those who are hyperthyroid and not on meds yet. Its NOT common, but if you are a person with untreated hyperthyroid disease, you need to be aware of it.

Your doc may have cautioned you about this, if not here's a bit of info on it:
I'd rather have people on our Team have info that they may never use, than be unprepared:

thyroid.about.com/od/hyperthyroidism
gr
aves/a/thyroidstorm.htm


Have a fun day... take care of youse!
: )
Mzzchief


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4/9/13 6:11 A

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Hi there and welcome.
I was very similar to you. I had a toxic adenoma and no antibodies.
I was put on carbimazole but they didn't suit me as I am very sensitive with meds so I had RAI.
It feels like a journey but there is some good information around to help and this forum is very informative. I am a newbie as well.
I have found here that even if you think it's a difficult question to answer someone will alway try. That's a great help when you feel confused. .rfc x



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4/8/13 7:42 P

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Thanks Mzzchief! Actually already take magnesium, calcium, vit D and a multivitamin. My doc has mentioned CoQ10 and vit B. Can't drink milk, but I do eat cheese and yogurt daily and tons of spinach. Also had a bone density at the same time and osteoporosis in both hips (yeah, it was not a fun doctor appt). He mentioned that he would like me on meds for that as well, but I will probably wait until some of the rest of this is sorted out. I'm putting a file together to take with me on my next doctor visit and will add the items you mentioned.

MZZCHIEF's Photo MZZCHIEF Posts: 9,268
4/8/13 3:20 P

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Hey Nytath!

I found this article on high triglycerides that may be helpful to you.

www.healthmonitor.com/heart-health/h
ig
h-cholesterol/surprising-causes-highR>-triglycerides


Thankfully I don't have that problem... my prob is higher than ideal LDL.
Thankfully my HDL is in the high nineties so my ratio is great.

Peeps with thyroid issues generally have some sort of deal going on with their cholesterol... its rare that its in "normal" levels. Most of our cholesterol and processed is made in the liver.

Our livers are also instrumental in binding our thyroid hormones. They put them in temporary storage with one of three binding proteins, albumen, thyroid binding globulin or transthyretin.

So it pays to take good care of your liver if you've got thyroid issues.
Which means avoiding alcohol.

I would think too that you might increase your consumption of vitamin C foods and take a multi-b vitamin supplement... just break one in half and have it twice a day... to support your adrenal function which is no doubt working overtime.

Ubiquinol ( a form of CoQ10) is good for the heart.
Some people may benefit from l-carnitine or ALCAR.

I would definitely think about making sure you get adequate calcium from foods, vitamin D and vitamin K, magnesium as well as the higher metabolism of hyperthyroid disease may leach minerals from your bones.

Put them all in your search engine and run em by your doctor to see if any of these might be of benefit to you.

Good call in cleaning up your diet... way to go, girl!

: )
Mzzchief

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4/8/13 12:05 P

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Thanks for the information everyone. I have confidence my doctor won't push me to do anything I don't want to do. He is really good at listening and discussing options. I've done a lot of research since the sonogram and since I do not seem to have severe symptoms, I think he will be supportive of the meds to start off with. I have also moved to a low glycemic diet as my cholesterol particle number was off the charts. While my LDL cholesterol was within range and my HDL cholesterol was high (good thing), my tryglicerides were elevated. This has been the case for a number of years and the previous doctor was not worried and did not test for LDL particle number. From what I have read, high triglicerides with normal LDL reading seems to be an indicator for an issue with LDL particle numbers. I have gone back to tracking my food and watching everything I eat. Hopefully, I can make sure I'm on track before the meds start so it will be easier to keep control of my weight (currently 139 at 5'4").

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4/8/13 9:56 A

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Hello, and welcome to the team!

I was hyperthyroid, but because of Graves. Unfortunately, I wasn't able to turn my around (or go into remission) like I wanted to, because I was also diagnosed with papillary carcinoma. So I had a total thyroidectomy, which was then followed with RAI 6 months later because of thyroid tissue being found on nearby lymph nodes.

So - I have some experience with being hyper. I found I would go to the washroom (bowel) a lot, and then I would be very hungry. I would pretty much go before every meal. I also have sleep issues, mostly in that I don't stay asleep, I wake up several times per night. I was put on Methimazole to slow my thyroid down, and within 3 weeks, I was sleeping wonderfully. However, because I was in the habit of eating so much, I continued to do so and gained about 15 pounds or so. By the time I was done with RAI, I had gained about 30 pounds, and I was overweight to begin with. So just a warning for you - if you are put on meds to slow down your thyroid, that will slow your metabolism. I'm not suggesting you do anything crazy, but just really try and pay attention to your body - are you really hungry? Or are you eating because that was your routine?

Finally - this may be getting ahead of the game a bit for you, but don't let anyone rush you into surgery or RAI. You -can- take medication to control overactive thyroid. When I was first diagnosed with Graves' I found a few message boards and was reading about people's experiences. Most doctors usually don't want you to be on medication for over 2 years, but there was one woman who had been on methimazole for about 20. I also read that your treatment quite often depends on where you live - that if you live in the USA, doctors tend to highly encourage thyroid patients to immediately do RAI, but in Europe, for example, the first step is surgery. I live in Canada, so RAI was the last resort. My point is - don't let anyone rush you, take some time to figure out what the options are and what the best option for YOU is. Maybe RAI IS the best for you, maybe its not. But once its done, its done, you can't go back.

Good luck and let us know if we can help you in any way.

Sue

edited to add:

RAI = radioactive iodine ablation - you take a high dose of radioactive iodine and it kills all thyroid tissue in your body

Edited by: SUEPERSTARS at: 4/8/2013 (09:59)
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4/8/13 8:34 A

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Welcome!

Karen

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4/8/13 7:48 A

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emoticon Glad you joined us.

Jane on Guam



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4/8/13 12:25 A

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Hey Nytah!

I've had problems with the html message when I used the symbols for "less than" and "greater than".. I see you have that written rather than using the arrows... I bet that was your problem, too.

We don't get many people here who are hyperthyroid with multi-nodular goiter with no antibodies, but I have read about this before... I've heard it called "toxic multi-nodular goiter".
Here's a excerpt as to the causes:
"Sequence of events:

Iodine deficiency leading to decreased T4 production.
Induction of thyroid cell hyperplasia due to low levels of T4. This accounts for the multinodular goitre appearance.
Increased replication predisposes to a risk of mutation in the TSH receptor.
If the mutated TSH receptor is constitutively active, it would then become 'toxic' and produces excess T3/T4 leading to hyperthyroidism."

From this Wikipedia link:

en.wikipedia.org/wiki/Toxic_multinod
ul
ar_goitre


So basically it starts with an iodine deficiency, causing the thyroid to grow, this overgrowth tends to create TSH receptors which have mutated to keep the thyroid stuck in the ON position. Adding iodine at this point would prolly increase the production of hormone, particularly if its not balanced with selenium, but I don't know... it would be a question to ask your doctor.


Will be interested in hearing what your doctor has to say.
Usually they treat it with one of two anti-thyroid meds, RAI or surgery.

If there's anyone on our team that has turned their Hyperthyroidism around before having to undergo treatment, please step up with advice.

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Hi all, Have had full blood work done almost every year for quite a few years. TSH has been trending down for quite a few but both T3 and T4 were within range although T3 was trending higher. Oct of last year TSH less than.01 (range .45 - 4..5) and T3 4.6 (range 2.0 - 4.4). Change of doctors (GP) and retested March this year. TSH less than .006 and T3 5.0. Previous doctor wasn't overly concerned, but did do antibody tests which were negative. New doctor is concerned and ordered a sonogram. Result was multinodular goiter. Have an appt in 10 days to discus. Didn't think I had symptoms, but now that I read what the symptoms are maybe. I was just blaming them on menopause. Hot flashes, always warm, irritable I always blamed my spike in heart rate when exercising on being out of shape. Guess maybe I had some of the symptoms with out realizing it. Have a feeling I will have more questions as time goes on.... (for some reason this website is giving me trouble posting. It keeps telling me no html. Making changes to see if it will take)

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