S/O from the weight thread - How many of you have a thyroid problem?

[amo_mea_filiis.]

I have gained 60lbs in the last 3 years. I developed obstructive sleep apnea before any weight gain. My hair and nails look horrible. I am beyond tired all the darn time (OSA is treated properly with the right pressure). My thyroid is enlarged on the left and I have nodules on both sides. Yet all the blood tests are in the average range (except vit D). (for anyone interested- TSH is 1.40 with a lab range of 0.27-4.2, T4 is 1.13 range is 0.7-1.7, Thyroid peroxidase was <10, and vit D was 11.2 with a range of 30-100)

 

I finally went to endocrine thinking he would treat based on symptoms, an extremely strong family history (most women on both sides of my faimily have/had a thyroid problem), and secretly "hoping" that he could find something worth treating.

 

Before he ran bloodwork he was pretty sure I had Hashimoto's, but that I wasn't yet hypo. Bloodwork showed no antibodies, so no hashimoto's. I was severely vit D deficent, so I've been taking an insane amount of that for the last few weeks. It has not changed anything.

 

There is nothing else that fits all of my signs and symptoms except hypothyroidism. And since endocrine said hashimoto's, maybe that's the underlying cause.

 

How many of you have a thyroid problem? Anyone difficult to diagnose? Anyone have any natural suggestions? Is anyone healthy and "normal" with thyroid levels outside the normal range? :bigear:

[FaithManor]

I have it and have had it for years. Took forever to find a doctor that didn't trust the bloodwork. This new doc says that the TSH limits were all established back in the 60's and 70's based on the amount of thyroid hormone the average 185 lb. male needed...no testing to establish limits for women. Unfortunately, the higher testosterone levels of men have some of the same beneficial effects on their bodies as thyroid so they actually do not need as much thyroid hormone as women. He figures that 40 million women need thyroid help, but don't trigger that "too low for women" threshold that docs are taught in school.

 

His philosophy is there are 13 classic symptoms of thyroid trouble. If you are experiencing five or more, you need help because obviously whatever your level once was, it's dropped off significantly. It took me forever to find this man and he is a doctor that spends 9 months of the year working in free clinics in remote locations of the world. So, he has a doctor friend stateside that writes scrips for me.

 

Hasimotos is very, very hard to catch because it literally means the thyroid functions well one day and not the next. You have to be tested on one of the low days and one of the high days to see what the difference was. Most doctors don't take the time.

 

As for the tired, you probably have low serum iron count but most docs only test for hemoglobin operating under the assumption that if you have a hemo count over 11 you must be fine. However, if you bone marrow is still in good shape, you can still have a some what decent hemo count and yet be tired, cold, etc. from low serum iron count. If the serum iron stays low long enough, the hemoglobin will eventually drop, but it's hard to get the doc to run the test. Standard response, "I tested you already. It was normal." You know, as if things don't change and all of these tests are 100% accurate.

 

Also, pituitary gland problems cause the thyroid to go wonky and yet, depending on the day you are tested, will depend on the results.

 

Faith

[Lizzie in Ma]

I have Hashimotos, mostly run hypo. Dang it all, why can't I ever have the loose weight version. :)

I always know when I need to up my meds because when I do read alouds, I feel like I am choking and yawn incessantly.

My favorite thyroid story though is when I was diagnosed.

I was at the dr. with the kids and she looked at me and said, "you have a goiter, you need to be seen'. And I said, "what does that mean?". She said, "well, you might have a thyroid issue, are you tired or irritable?"

I looked at her like she was nuts and answered, "I am the homeschooling mom of a 4 year old and a 9 year old, of course I am tried and occasionally irritable. If that is all you've got for diagnostic tools, we are screwed. ". :D

[unsinkable]

I have it and have had it for years. Took forever to find a doctor that didn't trust the bloodwork. This new doc says that the TSH limits were all established back in the 60's and 70's based on the amount of thyroid hormone the average 185 lb. male needed...no testing to establish limits for women. Unfortunately, the higher testosterone levels of men have some of the same beneficial effects on their bodies as thyroid so they actually do not need as much thyroid hormone as women. He figures that 40 million women need thyroid help, but don't trigger that "too low for women" threshold that docs are taught in school.

 

His philosophy is there are 13 classic symptoms of thyroid trouble. If you are experiencing five or more, you need help because obviously whatever your level once was, it's dropped off significantly. It took me forever to find this man and he is a doctor that spends 9 months of the year working in free clinics in remote locations of the world. So, he has a doctor friend stateside that writes scrips for me.

 

Hasimotos is very, very hard to catch because it literally means the thyroid functions well one day and not the next. You have to be tested on one of the low days and one of the high days to see what the difference was. Most doctors don't take the time.

 

As for the tired, you probably have low serum iron count but most docs only test for hemoglobin operating under the assumption that if you have a hemo count over 11 you must be fine. However, if you bone marrow is still in good shape, you can still have a some what decent hemo count and yet be tired, cold, etc. from low serum iron count. If the serum iron stays low long enough, the hemoglobin will eventually drop, but it's hard to get the doc to run the test. Standard response, "I tested you already. It was normal." You know, as if things don't change and all of these tests are 100% accurate.

 

Also, pituitary gland problems cause the thyroid to go wonky and yet, depending on the day you are tested, will depend on the results.

 

Faith

 

It was my understanding that there is an antibodies test for Hashimoto's b/c it is an autoimmune problem.

 

Am I misunderstanding this?

[unsinkable]

I have Hashimotos, mostly run hypo. Dang it all, why can't I ever have the loose weight version. :)

I always know when I need to up my meds because when I do read alouds, I feel like I am choking and yawn incessantly.

My favorite thyroid story though is when I was diagnosed.

I was at the dr. with the kids and she looked at me and said, "you have a goiter, you need to be seen'. And I said, "what does that mean?". She said, "well, you might have a thyroid issue, are you tired or irritable?"

I looked at her like she was nuts and answered, "I am the homeschooling mom of a 4 year old and a 9 year old, of course I am tried and occasionally irritable. If that is all you've got for diagnostic tools, we are screwed. ". :D

 

I've been hypo since I was 20.

 

A few years later, my thryroid functions were so off that a doc said to me she didn't know how I was walking around, let alone pregnant. :001_huh:

 

And I was like, ooh, a baby! I was still nursing my DD. :lol:

Edited March 31, 2011 by unsinkable

[Veritaserum]

I have Hashimoto's and take Synthroid. I was diagnosed about 3 months after my last baby was born. She'll be three in June. I was feeling really tired again in the past few months, but when I was at the endo last month my TSH was actually lower than it has ever been. My ferritin (iron), however, was really low. I've been upping my iron intake in food.

 

I started Synthroid about six months after I was diagnosed. Within two months I felt soooo much better. I didn't gain weight, but I didn't lose. I was at my heaviest, but I have a fast metabolism so I was still a size 8. I ditched my Mirena IUD nearly a year ago and the baby weight just magically dropped away with no effort from me. Hormonal BC, even in the low doses of Mirena, apparently isn't a good choice if I want to be thin.

 

My understanding is that Hashimoto's and Grave's result in antibodies in the blood. I actually have antibodies for both, but my Hashimoto's antibodies are a few hundred times higher than the Grave's. That is why I'm hypo and not hyper.

 

Another thing about TSH levels is that there is a range of normal. However, my endo refused to medicate me until my TSH levels went up over time. I felt absolutely horrible, but because my initial reading was in a normal range, she didn't want to medicate me. My TSH was 2.65. It went up to over 3.0 and I turned into the living dead. I needed a nap after getting dressed. Now my TSH is 1.37 and I feel pretty good. So, for me, my normal is less than 1.5 and greater than 1.25. Your normal could be closer to .25. I hope you get it all sorted! :grouphug:

[dirty ethel rackham]

It was my understanding that there is an antibodies test for Hashimoto's b/c it is an autoimmune problem.

 

Am I misunderstanding this?

 

Yes, you are right. But many doctors don't include the antibody tests in their panel. And, many docs interpret the presence of antibodies as an indicator of "future" Hashimoto's. They won't diagnose Hashimoto's until the TSH is "bad enough."

 

And to the OP ... I have Hashimoto's and have been on Thyroid meds for 5 years (NatureThyroid -like Armour without all the allergenic binders/fillers.) I never struggled with my weight until I had my daughter 10 years ago. I just could not lose the weight. I thought I would after starting to work out, but it still didn't budge. I worked with a trainer and gained weight ... in the midsection!! I didn't start losing weight until I did Weight Watchers last year and it was and is a daily struggle. I am still tired all the time because 5 years of undiagnosed thyroid disease seemed to mess up my adrenals. (I know that people here will say that is not possible, but my adrenal reaction is next to nothing.) When I am run down, I eat to stay awake - like at 2pm and 3pm and 4pm etc.

 

My next stop is the homeopath. She really helped me with adult onset asthma that developed after I had swine flu 18 months ago. I need to go back for all my other issues.

[Tess in the Burbs]

I have Hashimoto's and it's been since 98 I was diagnosed. I have yet to go 3 months without needing to adjust my meds. It's awful and I HATE dealing with this issue.

 

Here's my current issue: My TSH AND T3 are high. Apparently not possible...but alas, it's true and no one knows what to do about it. :001_huh:

 

My best advice: get into an exercise routine...when I am exercising I don't have the weight gain even when my TSH gets too high. I gain weight about 3.0 on the labs so my Dr tries to keep me about 1.0. Which is about impossible. I can get there but can't stay there. It gets too low, we lower the meds, it goes up, I gain weight, I take more meds, same cycle. Since 1998. I am so tired of it.

 

Anyway, I take Armour thyroid. Took Synthroid for almost 10 years and never felt good. Armour makes me feel normal when I get my TSH in the right range. Stay on top of your labs. My new Dr didn't believe me when I said I needed labs every 3 months...now she's confused about my labs. Time for me to find a new Dr.....

[FaithManor]

Hi Christina,

 

There is an auto-immune test for Hashimotos. But, a lot of doctors - at least the one's around here - refuse to run it if the base thyroid test doesn't register below the accepted ranges which actually doesn't mean much. However, that's the protocol and the insurance companies protect that protocol zealously because the immune test is more expensive (don't know how much more, but enough for the insurance companies to care) than the basic thyroid test. Hashimoto's is also a little more tricky to treat, thus more office calls, thus tests more often, thus more cost to the insurance company. It is very, very hard and especially in our area where we are badly underserved, medically speaking, to get a doc to listen - they've got more patients than they can reasonably handle. There are only do endo's in a five county area so guess how overworked they are.

 

My aunts thyroid problems were diagnosed by her OBGYN and since she got no help from the endo, her OBGYN still treats her for it. He's really compassionate. Unfortunately, also out of state, so no help to us here.

 

Faith

[Veritaserum]

I was referred to an endocrinologist after an MRI of my neck showed that my thyroid was enlarged. I got an MRI of my neck because my migraines went from 4 times a year to 4 times a week. We were looking for pinched nerves, but we still found the source of my troubles: thyroid. My endo ordered the basic thyroid panel AND the antibody tests right off the bat. She didn't treat me right off, but I was diagnosed within a week.

[Nestof3]

I have elevated TSH but T3 and T4 are fine. I am seeing an endocrinologist soon for further testing.

 

I'm 20 pounds overweight, in my opinion, though BMI charts say I am normal. No, it's not normal in my opinion to have this much flab and cellulite. ugh

[Impish]

:seeya: Meeee!

 

I've been dx hypo since....93? 94? It sucks butt.

[amo_mea_filiis.]

Thank you all!

 

I've always been thin. My go-to example is my physical after my son was born (he was about 7-8 months old) before I started working. I was a healthy 98lbs. I'm only 5' so right around 100 is okay. I fit nicely in size 3 pants. Not too tight, and certainly not loose.

 

I lost the baby weight without trying after both kids were born. It wasn't until my son was 3ish that I started gaining. I recently had a miscarriage and wonder if my thyroid played a part in that.

 

The endo did run the hashimoto's antibody test. The range is 0-35 and mine says <10.

 

It doesn't matter when or what I eat, I'm always tired after eating and it's getting really annoying.

 

So how in the world do I go about finding a Doc that will look at the whole picture and not just the "normal" range of TSH, T4, and antibodies? My biggest problem is that the Docs (endo and primary) are sure something is wrong based on history, signs and symptoms, but once the bloodwork comes back, or the nuclear thyroid uptake, they say I'm fine! I'm ot going to the Doc because I like it, I go because I have signs and symptoms of a medical problem.

[Peela]

Check out this book- Why do I still Have thyroid Symptoms when my lab tests are normal? i was recently diagnosed with hashimotos.

My doctor- a pretty cool alternative type doctor with an interest in nutritional medicine- immediately put me onto a gluten free diet. I go back in 2 months for more tests to see if it helped at all. I am not sure I feel any better yet- after 2 weeks.

The book is fascinating though. I downloaded it as a Kindle.

Also- there are forums here for people who have read the book. Also, there are links to doctors who are trained in this understanding of the thyroid.

 

I believe what Faithe meant was that with hashimotos, the immune system periodically, not necessarily consistenlty, attacks the thyroid gland. When it is in attack mode, the antibody test will be positive- but when it is having a break the test may be negative.

However, there are other causes of thyroid issues that the book covers. Most people need to be treated according to their symptoms, not according to the numbers on their blood tests.

[mommymilkies]

I had it after the birth of my son. They thought it was mono (it wasn't), then they thought it was lymphoma (it wasn't), then the biopsies and bloodwork came back as thyroid problems. It went away on it's own about a year later. I was taking beta blockers for heart issues during that time, though. When it went away, I finally lost the weight!

[abacus2]

I was diagnosed hypo after my oldest was born. I gained 20lbs while nursing full time between my 6 week check up and my next annual exam 4 months later. The doc could tell something was wrong and ran some tests. My TSH was 92.0! I went on Synthroid and my weight stabilized and I became a functional person again. I have a wonderful endo who listens and does his best to treat my symptoms not my bloodwork. A couple years ago I was just not happy with how I was feeling and I switched to Armour at his suggestion. It didn't really help with energy levels or weight, but I felt emotionally like myself again. It's wonderful. I was recently diagnosed as Vit D deficient too so I'm hoping my new prescription vit. D will help get my energy levels to a better place.

[Ellie]

I have it and have had it for years. Took forever to find a doctor that didn't trust the bloodwork. This new doc says that the TSH limits were all established back in the 60's and 70's based on the amount of thyroid hormone the average 185 lb. male needed...no testing to establish limits for women. Unfortunately, the higher testosterone levels of men have some of the same beneficial effects on their bodies as thyroid so they actually do not need as much thyroid hormone as women. He figures that 40 million women need thyroid help, but don't trigger that "too low for women" threshold that docs are taught in school.

 

His philosophy is there are 13 classic symptoms of thyroid trouble. If you are experiencing five or more, you need help because obviously whatever your level once was, it's dropped off significantly. It took me forever to find this man and he is a doctor that spends 9 months of the year working in free clinics in remote locations of the world. So, he has a doctor friend stateside that writes scrips for me.

 

Hasimotos is very, very hard to catch because it literally means the thyroid functions well one day and not the next. You have to be tested on one of the low days and one of the high days to see what the difference was. Most doctors don't take the time.

 

As for the tired, you probably have low serum iron count but most docs only test for hemoglobin operating under the assumption that if you have a hemo count over 11 you must be fine. However, if you bone marrow is still in good shape, you can still have a some what decent hemo count and yet be tired, cold, etc. from low serum iron count. If the serum iron stays low long enough, the hemoglobin will eventually drop, but it's hard to get the doc to run the test. Standard response, "I tested you already. It was normal." You know, as if things don't change and all of these tests are 100% accurate.

 

Also, pituitary gland problems cause the thyroid to go wonky and yet, depending on the day you are tested, will depend on the results.

 

Faith

Oh, if only your doc lived in Austin!!! Mine will only go by blood tests, not by symptoms.:glare: And he doesn't believe that "normal" could be different for different people. :glare:

 

I can't lose the weight. I'm about 40lb over what I consider to be my "normal" weight. It ain't comin' off.

 

I've been taking tyroid meds for close to 20 years. ::heavy sigh::

[*~Tina~*]

I just recently learned that I have some nodules on my thyroid. I haven't seen the endo yet, so I'm subscribing in case I need to find this thread again ;)

 

Other than the thyroid panel and antibody, any other labs relevant?

[ShutterBug]

I was officially diagnosed with Hashimotos shortly after the birth of my son 9 years ago.

 

Despite my TSH levels always being close to the overactive level (well under 1.0), thus indicating I was taking plenty of Synthroid, I still had lingering hypothyroid symptoms (fuzzy brain, weight gain, tired, etc...).

 

I had read that sometimes with Hashimotos the body doesn't adequately convert the Synthroid (T4) to the T3 the body needs to maintain metabolism and energy levels. Sure enough, when I had my T3 levels tested they were very low, despite my TSH and T4 levels being fine.

 

I started taking Armour...which soon became very difficult to get in the U.S. I switched to NatureThroid, but that was soon next to impossible to obtain as well. In a desperate attempt to stay on natural thyroid products I began ordering a similar product from Canada.

 

At some point I became tired of stressing each and every month as to where/how/when/whether I was going to get my thyroid medication.

 

About a year ago I switched back to Synthroid, but began taking synthetic T3 along with it as a supplement. WOW is all I can say. FINALLY, my energy came back. FINALLY the slow, but steady weight gain stopped (now I'm working on slowly, but surely losing it, lol).

 

Jenn

[LunaLee]

I have nodules. My endo is treating them by giving me levothyroxine although I'm not sure it's helping. I still feel like crap all the time and at the last u/s one of the two largest nodules had shrunk and the other one got bigger.:confused: I don't want to have surgery, but the size and the location of the nodules makes it difficult to breath and swallow sometimes. FWIW, I've always had 'normal' lab results, even after the nodule diagnosis.