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Thyroid issues?

Riders with Health Issues
#1

anyone have experience with thyroid issues? I have all the classic symptoms of hypothyroid (unexplained weight gain, metabolism shut down, anxiety, fatigue, etc.) My TSH is a 3.8 which apparently is classified as “normal range” by many doctors but more and more are saying that .5-2.5 is actually normal under a newer scale, according to Dr. Google.

I need to try to fix all this because I’ve felt like crap for a year now and gained weight for the last 6 months despite all efforts to stop that. Can I go to a GP or do I need an endocrinologist? My neurologist did the blood test and I am sure he’s probably not the best resource for this.

#2

Endocrinologists definitely have the training to handle hypothyroid, but all too often I’ve heard horror stories of how some dismiss patient symptoms. Personally, I was diagnosed by an OBGYN, originally treated by an internist who didn’t tell me nearly enough, and for the past 23 years, have been treated successfully by my family practice doc. My family practice doc consults with an endocrinologist when necessary.

What I think is the most important is that you have a medical team that listens and responds appropriately when you report symptoms. TSH alone is probably not telling the whole story. There are others here who are more clued in on current testing knowledge. What I do know is that free T3 and free T4 are important as well, but I think there are even more subtleties in testing these days.

BTW, I have Hashimoto’s, which is an immune condition causing hypothyroid. I’ve been living with it for about 25 years, and because my doctor has been very responsive, it’s been under good control.

Best of luck in getting this sorted out.

Rebecca

#3

I had all the same symptoms, but because my blood work was normal they did not want to listen to me. My dr would say eat better and exercise more I wanted to punch him. I eat like a bird and do more hard labor in two hours than most do all week ( I have my own farm). I finally went on Amazon of all places and found a company that sold pills to help with this. I tried it and guess what the weight fell off of me and my energy came back. My Dr was not happy I was taking it (came from Thailand) but I told her to find another solution and I will. Now I only take it as needed but it has been a life saver for me.

#4

There is more than one test for thyroid function. TSH is one piece. I know that T3 and T4 can also be tested. I would consult an endocrinologist if your primary care provider can’t figure it out.

#5

Go to an endo and don’t be afraid to keep switching until you find one that works for you. And as downen suggested go to that website and read all of it. I had a really hard time after my thyroid was removed and felt exhausted. I thought I needed a higher hormone dose but what my dr didn’t tell me is that being on too much hormone replacement can make you just as tired as too little. I found out my level was .18 (“normal” used to be .5-5 now is .3-3) which is technically too low (meaning I was on too much medication). I found a new endo I liked better who dropped my dose and also added T3 medication (most doctors won’t do this which is stupid). What I’ve found is that while there are levels for being normal, everyone’s body prefers a specific level. I do better on a higher level (less meds) and some do better on a lower level (more meds). Listen to your body, advocate for yourself with your endo, and don’t be afraid to try different levels and see how it makes you feel. Its definitely a lot of trial and error. Best of luck

#6

Also I had a thyroid tumor that was literally making me crazy - diagnosed bipolar and my thyroid levels were “normal” so it took 4 years before they realized what was actually going on. They only figured it out because I had a giant golf ball sized lump sticking out of my neck (literally just appeared one morning). Even after the dr saw it he didn’t suspect thyroid issues because again my levels were “normal”. Surgeon said he had never seen such a large tumor in someone my age. I was only 23 at the time it was removed. Again just because your levels are within the normal range doesn’t mean that its working for your body

#7

My GP told me if TSH is in the middle of normal range, that the free T3 and T4 were likely to be normal as well. I looked up thyroid doctors (from a link on another thread on COTH) and just had an appointment with a PA at one of the offices. It’ll be interesting to see what the labs say. I’m so tired of being tired (x6 years.) She started me on Nature-throid on top of my levothyroxine, just had my first dose. I need to schedule a thyroid ultrasound too.

#8

I too have Thyroid issues… was diagnosed as “normal” by my GP… ended up going to a Naturopath Doctor, NMD… More expensive but she did more extensive testing, got me on a good program with natural based medications and supplements. Im much better now

#9

It’s important to push for TSH, T3, T4, AND thyroid antibodies. The last piece is what will give the real story. I was just recently diagnosed with Hashimotos and Graves Disease. For years and years I swore something was off, but my TSH and T4 were normal, so no one looked any further. I’ve been seeing a fertility specialist and she uncovered the lab results and referred me to an endocrinologist.

#10

Dps…what did you try from Amazon?? I am in search of something (PM me if you would rather), as the levothyroxine just isn’t cutting it.

#11

If T4 isn’t cutting it, something else is probably going on. It’s possible that your T3 is too low and you need T3 supplementation. Depends on what your free t3 and free t4 levels are. It could also be Hashimoto’s or Graves. Have you tested antibodies to rule this out?

#12

Agreed, COL…I am in the process of changing doctors in order to get to the bottom of it. Looking for something OTC to help in the meantime. Thanks!

#13

I’m glad you’re pursuing this and changing doctors if yours wasn’t too concerned. You’d be surprised how much better you can feel if your levels are off and then you take the right medication. I don’t know why some doctors ignore T3 levels, need for T3 medication, or don’t even know what are good levels of T4. Or they forget that it could be autoimmune and don’t bother running antibody tests.

#14

I’m hypothyroid, diagnosed by a naturopath. I’m on 1 grain of desiccated pig thyroid per day, along with several other vitamins and minerals to support my system. I’m feeling much better and the weight is falling off.

#15

I’ve been fighting with my thyroid for a couple of years now. Going off of my initial symptoms you would have thought I was hypo. I was gaining weight, was cold all the time, lacked energy, my periods were extremely heavy, and I was losing a lot of hair. I got a referral to an endocrinologist and it turned out I’m hyper, not hypo. He wasn’t able to explain the discrepancy in symptoms, but treatment with anti-thyroid meds has helped a lot. An ultrasound found that I have about 16 small masses on my thyroid, but the 6 largest were biopsied (UNPLEASANT!) and found be be benign, so I’m fighting to keep my thyroid for the time being, though my doc wants to take it out due to the risks from long term use of Tapazole. I’m on a very low dose of now, which seems to be keeping things where they need to be, so he’s not pushing the issue.

1 Like
#16

Thanks for all the posts. My GP didn’t want to treat (he opposes most medical interventions/is a minimalist who opposes even multivites) so I ordered some Thyroid herbal thing on Amazon with great reviews. I feel SO MUCH better. It is really shockingly effective! Thanks again for the push to do something about it.

#17

I was diagnosed as autoimmune-caused hypothyroid (Hashimoto’s) about 5 months ago. My original TSH test was off the charts, about a 37. They started me on levothyroxine 25mcg, and now I’m up to 100mcg per day. I feel waaaayyy better, but still not quite “normal”. I have issues still with energy levels, being cold, and aches in my joints, but again, it’s still way better. My General Practice doc did the diagnosis and was right on the money. I also started seeing an endocrinologist but have only seen him once. I have met multiple people with thyroid conditions, and if I have any take-away about this disease, it’s that everyone seems to experience it differently, with different test results and different treatments and different responses to treatments. If you don’t feel right, then keep after the doctors until you do. Remember that you know yourself best, and no one will fight for you, other than you.

#18

I’m sorry to hear that. 3.8 TSH and all of your symptoms means your thyroid is working harder than it needs to be to try to make it’s hormones. TSH should be below 2.0. The fact that your it’s 3.8 and you’ve got a bunch of symptoms is very telling.

I hope you got your free t3 and free t4 tested (how much of each thyroid hormone is available immediately to be used by cells. Not plain t3 or t4, which are bound, not free.)? And thyroid antibodies to rule out autoimmune problems. Very important to know if autoimmune problems are related to or causing your low thyroid (slow - hypothyroid) problems.

#19

After completely switching to Nature-Throid (I think the dose is double what my Synthroid was) I had repeat labs last week. My TSH went UP and my T4 went down and T3 is exactly the same. Couldn’t get in to see the PA until 7/18 and the office hasn’t called me about the lab results.

#20

That doesn’t sound good. How are you feeling? Were you also tested for thyroid antibodies to determine if it’s autoimmune? If not, need to eliminate that is not also going on by testing TPO and TG antibodies. What is the NatureThroid dosage you are on? NatureThroid contains mainly T4 and some T3, T2, T1 and calcitonin. It’s possible you are reacting to a filler or something in the pig’s used to create the NT diet. I was not able to take “natural” thyroid medication due to autoimmune reaction to either a filler or what the pigs ate. You can always call the office and get your lab results, or stop in.

Another possibility is that your thyroid is really struggling and is swinging up in down. Could also be autoimmune reaction to medication or something you are eating. What’s your diet consist of?

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