Thyroid Conditions

[Banana Vap70]

Was diagnosed with Graves about 1 1/2 years ago. I am actually having surgery to have it removed in a few weeks. I have all of the classic symptoms except that my eyes haven't been affected and I didn't loose weight, to the contrary I gained weight. I think I was undiagnosed for at least a few years. Both of my lobs are what they called very generous and because I have been having issues swallowing etc. I decided to go with the surgery rather then the radioactive iodine. I also didn't want to have to go through the possibility of multiple doses of the radiation because of the size and then spend the whole time while it was dying going up and down.

Been through that over the past year with the anti thyroid meds. The thought of going on a different med and then having to work to get leveled out really blows. I'm just tired of being tired all of the time and not having any energy, sure doesn't help make it any easier to control the weight.

How long did it take to get your levels where they needed to be? How do you feel most of the time now better worse, no change? My doctor hasn't really told me what to expect, the last blood check and they had to cut back my meds because I was underactive, have spent the last year yo-yoing up and down. I'm just afraid that I'm never going to feel good again.

 

[ClintS]

When I started vaping and quit smoking I had considerable knowledge in what to expect, my thyroid disease has had no part in my changes but my not smoking did. I personally doubt that vaping has any negative relationship to thyroid issues.

I've was diagnosed with Graves disease more than 35 years ago. Since a radiation iodine treatment I've had hypothyroidism. I was a case study for doctors at Bethesda Naval Hospital, Johns Hopkins University School of Medicine and Walter Reed Medical Center. I had a truly outstanding endocrinologist from John Hopkins which understood thyroid diseases better than 99% of the of doctors today. This doctor had established levels for TSH, T3 and T4 which were not accepted by the medical community until the late 90s amongst other things.

A couple of things I've learned over the years most of it early on from the doc at John Hopkins. These are my personal lessons learned and do not replace a doctor's advice or directions!!!!

Smoking tobacco can mask or contribute to symptoms of thyroid diseases if present. So your stopping or starting smoking and thyroid symptoms could go hand in hand.

It will probably take at least two weeks for a change in medication before you feel changes and maybe as long as 6 weeks. It took almost 12 months before finding my initial 'best' levels of meds. For most it seems to be a lot shorter time frame.

Find a doctor that is open to listening to and acting on how you feel, your symptoms as well as test results. If they are not, find another doctor - but you need to do your part see below.

You do not necessarily need an endocrinologist, most have basic understating of thyroid diseases but usually are very knowledgeable about diabetes. It's just the way it is, so a GP may serve you as well or better.

Eating balanced meals of the right amount, daily exercise, and maintaining your weight properly does an immense amount of good for you and proper awareness of your body. I cannot emphasize this enough!!!!

Take exactly what is prescribed, no more, no less. Valid test results are based on this and you only hamper any changes that might need to be made if you do not follow what is prescribed, besides other potential medical issues.

Levothyroxin or other thyroid meds will not affect your weight by and of themselves!!!

Take your thyroid meds about an hour before breakfast and about the same time every day. Some mediations should have at least a four hour separation between taking them. Some foods interfere with thyroid meds. Talk to your doc to clarify and follow their guidance.

Keep your own personal records of TSH, T3 and T4 test. Preferably a copy of the lab test with their normal ranges. Get TSH test done every six months or at least annually. Not all labs tests produce the same results, differences in testing procedures defines expected within normal ranges. So you may not be able to compare one set of lab results against another.

I've used trend analysis and marked which test levels related to when I feel the best. Most of my doctors have not wanted to get T3 and T4 test completed regularly. I use my records in discussions with my doctor when they or I think there needs to be a change in the amount if meds. At this point they usually agree to T3 and T4 test as well.

As my first doctor said, "Out of all of the diseases to have you have one of the most controllable, only one tablet everyday for the rest of your life." I had a hard time accepting that but in hindsight it's probably true

 

[jassybelle]

I have hypothyroidism. I started out with a goiter and ended up with cancer. I made them take the whole thing out instead of the one side they wanted to take out. I told them you are only slicing on my neck once because either way it goes I am on medicine for life. I have been cancer free for 3 going on 4 years now. I am on naturoid it is like armor thyroid med. Cant do synthroid it just did not work for me. In fact my goiter got bigger on it and so did I. I am glad I found yall. Good health to you all.

 

[Stacy1]

Ive been on synthroid now for five years after being diagnosed with hypothyroidism. My dosage has been adjusted three times, but for the past two years my numbers are "normal" range and I still dont have my energy back. I hate going to the doctor, so I got pretty bad off before getting diagnosed. I feel alot better now than I did then, but nowhere close to my old self.

 

[nicotime]

Just a quick drive-by as I'm not on here much. I have been Hypo since back in the late 80's. Started out on Synthroid but still never felt right....convinced my dr. about 10 years ago to put me on natural Armour...and it did the trick...like night and day. Armour disappeared for awhile and I had to go to Naturethroid. I'm now on 292.5mg of it a day. Good luck to you all!

Dont know if this site has been mentioned...but it has a lot of good info on the subject...here's the link..........

Stop the Thyroid Madness

 

[KineticMind]

Wow, I didn't know this subforum even existed! Figured I'd swing by and give a little bit of my own history of battling with thyroid issues. I am actually 3.5 weeks post-op from my second thyroid surgery and no longer have a thyroid at this point.

About 7-8 months ago, I went to the doctor because of several issues that had been bothering me for several years; namely the constant sluggishness, lethargy, and brain "fog." After running a litany of blood tests, only a few came back abnormal, primarily my elevated TSH levels and extremely high calcium. My GP recommended me to an Endocrinologist, who handed me a little pamphlet about hyperparathyroidism and Hashimoto's thyroiditis. After ordering some CT scans and looking them over, he said one of my parathyroids was pretty badly enlarged and would need to be removed and put me on a small dose of Synthroid for the Hashimoto's. I had my first surgery a few weeks later.

During the surgery, my surgeon noticed a very small spot on the left lobe of my thyroid that he didn't like. He sampled the spot to send off to pathology and decided there to do a lobectomy during that procedure, removing the left half of my thyroid and surrounding lymph nodes. The affected parathyroid gland was removed and my calcium returned to normal levels. A few weeks later, I went back to work and figured the worst was behind me.

Unfortunately, I was wrong. The pathology report came back and that tiny spot was confirmed as papilary carcinoma (cancer) of the thyroid. Just knowing that I "had" cancer threw me for a loop, and knowing that it may still be present on the other side of the thyroid was disheartening.

The surgeon and my Endo got in touch with me soon after and laid out my options. There was no cancer found on the thyroid tissue that was removed or in the lymph nodes - which they both remarked was pretty odd - and told me that the one spot they found could possibly have been all there was. However, there would be no way to know for sure. They said that we could simply keep me on my current levels of medication and do yearly scans to check for returning cancer or we could go back and remove the other half of the thyroid whenever I felt like doing it. I didn't feel like doing it, to be perfectly honest, but neither did I feel like knowing there was a lingering possibility that I could wind up finding cancer in a future test. I opted to wait until after the new year and go ahead with the surgery. I would probably eventually have to have the surgery done anyway after the Hashimoto's decimated it to the point of it being useless to keep in my body.

Fast forward to the middle of January 2016; the time came and went to have the rest of the thyroid removed. I actually found the second surgery to be a lot less taxing, physically and mentally, than the first. Still hurt, but not as bad this time around. I went in after my post-op for routine blood work and discovered my TSH was almost 40! Called my Endo and he upped the dose of Synthroid to 125mcg/day. We'll be checking levels again next month and will go from there. T3 and T4 ranges seem to be normal. I had wondered why many of my symptoms hadn't improved much after my first surgery, and the TSH levels was probably it. I also found out during my post-op that there were NO other signs of cancer in any of the tissue or lymph nodes that got removed this time around. Being under 40, my Endo says it is extremely likely that I am cancer free at this point. He hasn't said anything about a radioactive iodine treatment yet, and I'm hoping he doesn't. I'd rather not have to deal with that unless absolutely necessary.

I return to work next week and am slowly feeling up to the challenge. I've started taking 10,000 iu's of vitamin D3 along with some magnesium and boron supplements that I basically self-diagnosed myself being deficient in a few weeks ago. I feel pretty good, but still having an occasional hard time getting past the daily cat-naps... though that's probably from lounging around the house for several weeks. I'm thinking that will improve when I get my TSH levels back in check. I'm just glad to *hopefully* have put the cancer scare behind me.

So, that's my story, and I'm sticking to it! Sorry for the long-winded intro, but thought I'd get it all out from the start so people can know where I stand.

 

[Falconeer]

After a dose of the 'flu in the late 90s I developed a lump around my parotid gland; after several visits to the doctor I was referred to a specialist who diagnosed that I had a tumour on the gland...he also found another on my thyroid gland. I was operated on in 2000 AD and was glad to receive the news that both tumours were benign, however part of my thyroid gland had been removed. Due to a mix up however the hospital missed out telling the GP Practice that I should be put on thyroxine for three months. During those three months I had no energy, everything was an effort, I had no co-ordination, was chronically anxious and life had no "Sparkle for me. I was started off on 25 mgs of Levothroxine which was worked up to 125 daily - a dose I have been on since then. I know some people do not like having to take thyroxine but all that I can say is that it gave me back my life/made life worth living again.

 

[Foofightervape girl]

Here's the thread for all the thyroid condition sufferers!

Thanks I have a low thyroid and it wreaks all kinds of havoc on me but it' s under control now .... Thank goodness it only took tons upon tons of synthroid lol but will be happy to hear what ya'll go through with yours

 

[Foofightervape girl]

Thanks I have a low thyroid and it wreaks all kinds of havoc on me but it' s under control now .... Thank goodness it only took tons upon tons of synthroid lol but will be happy to hear what ya'll go through with yours

And ps ... Hugs to all you guys I know it's a hard road... But y'all are doing an awesome job taking care of yourselves and coping with it I know it's not easy but congratulate yourselves for being so brave in the face of this mess- I know the blood work X-ray and all that surgery is taxing but in the end.... It's all about how you deal... And y'all are doing a fabulous job hugs again!!! Ali