52 replies to this topic

[nuttmegs17]

Hi

I am getting so discouraged waiting and honestly becoming scared that I will not know why i feel this way and know HOW to stop this. The loss of control is maddening. anyways...it's been wearing me out...this is a very supportive place and I'm learning a ton....great to have this information as it seems many docs aren't up to snuff...

Sounds like many people here have experienced thyroid issues so i wanted to throw this out there

Did any of you get diagnosed with HYPO or Hashimotos even if you were w/in normal TSH range? I ask b/c i used to have graves (where i went from a small size to gaining 30 pounds within as many days....for me it wasn't a "skinny" disease) but once i got the proper hormone therapy it actually went into remission (took a while but it happened thankfully, spent most of that time in a fog so cant remember specifics). This was over 7 years ago and i have not had to take any hormones since then (despite surpressing thyroid hormone, my weight went back to normal and i almost forgot i ever had a problem!)....now my weight is creeping up despite eating healthier than ever (i train for half and full marathons, ride bikes 22 miles round trip in good weather etc...log calories in a food diary...I know myself well enough to know this isnt normal (I've catalogued my other symptoms elsewhere so I'll spare you)....I'd love to say this is muscle gain but it is clearly not (and if one more of my friends throws out: "have you tried adding weights or intervals to your workouts?" i'll scream, seriously. its insulting that people think i'm to blame for my symptoms....but that's another forum....)

I get tested every year and it's always been within about .05 of each reading (i understand it fluctuates)...now it's shot up a bit - the most i've seen shoot up in a while...however, technically it's still w/in "normal" range so my primary doc doesnt think it's my thyroid. When i pulled out all my past tests, I noticed a definite trend upward - once it went up a degree, it never was down again, each reading is higher and higher....I'm planning on going to an endo to get a full panel done but just curious how common this is....is it possible that the lab "normal" isn't my normal and could be explaining some of this? i have to be my own best advocate so am just trying to get a feel for other situations before i talk to an endo. Even if it's not technically hypo - isnt it worth it to try hormone therapy to get me back to a normal level to see if i feel any better? Anyone have experience with this?

Do many of you have both a thyroid problem and celiac?....if it's one, should i stop it's assuming it's the other (i truly hope it's one as i wont know where else to look to explain all my symptons)....just trying to piece this together


I've been posting a lot around here so thanks for bearing with me. i tend to get a bit anxious. its just that I remember all too well how much an autoimmune disease system can turn your world upside down, and it's scary seeing myself going down the same road. When I had graves i became so isolated b/c no one believed there was anything wrong with me...they thought I was eating too much chocolate! I went from being extremely athletic to barely being able to climb a flight of stairs...my heart kept me up all night and the insomnia made it so i couldn't function during the day....it was terrible and i had to drop out of college and quit work for years. I had virtually no friends (those i had didn't understand so I lost them). my doctor was amazing and fixed me up eventually (Thankfully he realized what was going on) and i had my parents love and support.....with these symptons, I'm already getting similar reactions (like i said above, as if the weight gain is bc i'm lazy or just not trying)

I really like where i am today - great job awesome friends and an incredible husband...i'm so fortunate, i'm just scared I'm about to lose it all again. I am scared I will just get sicker and sicker and not know what is happening.

[eatmeat4good]

Aww Nutmeg! I wish you didn't have to feel so awful. I understand the fear of regressing and losing it all. I have those thoughts too. I don't really have any thyroid answers for you, but I think you are right. One person's level is not the same as another's. I just read a bit about thyroid and it seems that some Dr.'s are now understanding this concept and may be willing to medicate not only by the numbers but according to how the patient feels. I'm hoping that is the case anyway. I have a "normal" TSH but have a swollen thyroid and fatigue that comes and goes but some days controls me.

Can you talk to the Dr. that helped you with the Graves?

CassP will be giving you a reply here in the near future. She has both Hashimoto and Graves. I consider her the thyroid expert. Well, one of them anyway!

I need to get checked for Hashimoto's too. I was hoping to be able to explain what you just did...that levels may be normal but not optimal. I can't see a specialist though.

Start with the full thyroid panel. I will be interested in what happens here. Thyroid is a big issue for several folks here.

Your posts are very well-written. Don't feel like you write too many. You may have anxiety going on, but it isn't unwarranted. You have been through a lot and you don't want things to get out of control. You are being proactive and taking care of yourself.

It is maddening to gain weight and not be able to contol your weight. I was there several times with this Celiac ordeal. I would not be able to exercise though, I was so weak. But all my family kept saying, You need to get out and walk. But I have heart palpitations and feel like my heart is going to explode I would say. Then the darn Dr. would say the same thing...You just need to exercise. Nothing showed on his ekg so I must be lazy.

Keep advocating for yourself until you find out. And please send me just a dash of your energy.

[burdee]

First of all, the 'normal' range for TSH changed in 2003. So the new range is .3 to 3.0, rather than .5 to 5.0. Many docs (esp. endocrinologists) prefer the top number be more like 1.5. So consider what range your doc uses.

Secondly, you need to consider several thyroid tests, such as free t4, free t3, total t4 and total t3, as well as thyroid peroxidase antibodies, which indicate Hashimoto's antibodies. If you have Hashimoto's your TSH, T3 and T4 scores can be normal, while your Hashimoto's antibodies are very high.

Consider seeing an endocrinologist, if your current doc won't give you the full panel of thyroid tests.

[nuttmegs17]

Good advice. I am trying to get into see an endo now. The thing that is upsetting me is that I told my primary doc from the beginning that I had graves disease and was concerned about my thryoid - I asked for a full panel then (said this well over a year ago). She tested me and said they were normal and indicated she had run the full panel as requested...when I got my hands on the results recently I realized she really hadnt been runnign the full panels this entire time!- just the T4 and TSH...which as you mentioned could completely overlook a prob with Hashimoto. So frustrating.

[cassP]

lol- love the shoutout- thanks for thinking of me as an "expert" i consider myself an expert in feeling like crap- but i honestly learn most of my stuff from all you guys

nutmeg: boy do we all know how you feel- i can hear the anxiety in your post- and can SO relate to that- i relate right now- i feel like my hypo AND hyper symptoms have been getting worse- just had a panel on monday- and am starting to create paranoid scenarios as to why my Endo hasnt called me yet to up my dose or translate the panel

anyways- i second Sue above- you have to find a good Endo who will test ALL your thyroid numbers- AND test ALL your antibodies from time to time. i originally was under my PCP's care- and it probably made my Grave's worse. she swore she could treat me- but she only would put me on Synthroid- and i had to beg her to test my Hashimoto's antibodies. now i have a good Endo who was openminded to test my Grave's antibodies & i also just got my Reverse T3 tested. she was also openminded enough to try me on Armour.

anyways- it is so important that you find a doc who will test ALL your numbers- because our conditions can be very difficult to treat. for example: with my Endo- we were able to see with the numbers- that when i was on Synthroid only- my T3 shot down even though my TSH was moving down to a healthy range...

i also plan to re-test all my antibodies yearly or biannually to see what's going on there.

weight gain & loss for me didnt vary too much- i seemed to adjust my eating to my intestinal motility... but i notice- without enough T3 i start swelling, getting constipated and getting real CRANKY

good luck to u- i hope u get to a good Endo soon

[nuttmegs17]

You guys are awesome - thanks for the support! I was definitely in need of a kinda of virtual hug that is for sure.

I'm curious - I will admit to ignorance about all the possible thyroid hormones to test. Are there specific ones I should be on them to test or watch?

you've mentioned antibodies? rervse T3s....if you can think of them, I'd like to know so I can be as specific as possible (apparently not all docs understand "complete thyroid panel") with this new endo. THANK YOU!!!

[eatmeat4good]

I'm going to tag along here.

I just scheduled an appointment for tomorrow morning.

Could one of you experts please list all the thyroid tests we should have run?

TSH
T3
T4
Reverse T3
Free T3
Free T4
Hashimoto's Antibodies
Peroxidase Antibodies

That is what I got so far from this post. What are the graves antibodies test called?

I'm sorry, I'know you have listed these elsewhere, but I have a migraine headache and cannot look them all up.

Thank you so much, really you guys are great.

[nuttmegs17]

I will be interested in this as well...wanna go in prepared

[cassP]

ok, im a little confused cause everytime i went for thyroid tests- they tested for different things- so i hope i jot everything down correctly:

Thyroid Peroxidase Ab (TPO) -> main Hashimoto's ab
Antithyroglobulin Ab -> present in both Hashi & graves
Thyroid Stimulating Immunoglobulin (TSI)-> Grave's ab

TSH
T4 free
T3 free
T3 uptake

Reverse T3

and 1 test i also got these: Total T4 (T1 & T4) & Free Thyroxine Index <-im not sure what these 2 tests do- and they only ordered those for me 1 time. ??

[eatmeat4good]

Thank you Cass. You are a gem. At least I can ask for these things you listed. Thanks again.

[parrfunkel]

T3 uptake and free thyroxine index are pretty uaelss as I understand them. They are essentially mathematical equations based on total T4 that attempt to estimate free T4 and free T3. Better to just test FT4 and FT3 than try to guess them.

[cassP]

T3 uptake and free thyroxine index are pretty uaelss as I understand them. They are essentially mathematical equations based on total T4 that attempt to estimate free T4 and free T3. Better to just test FT4 and FT3 than try to guess them.

hhmm interesting...

u mean the t3 uptake isnt useful? i was assuming that it meant how our body & cells are using the t3? but i could totally be making that up

[parrfunkel]

CassP

Here is a description I found on the T3 uptake test

T3 Resin Uptake or Thyroid Uptake. (T3RU) This is a test that confuses doctors, nurses, and patients. First, this is not a thyroid test, but a test on the proteins that carry thyroid around in your blood stream. Not only that, a high test number may indicate a low level of the protein! The method of reporting varies from lab to lab. The proper use of the test is to compute the free thyroxine index

Here is the source
http://www.amarillomed.com/howto

[nuttmegs17]

Hi - I'm back it's been a rough go. I just continue to feel worse and worse. i feel soo lightheaded and dizzy most days and just down in general


I had the TPO test which came back today as abnormal and which indicates Hashimotos (less than 30 is normal, I was 250)...in addition, my thyroid level jumped up quite a bit again (! - quite a huge jump actually esp since the last number was taken only 2 weeks ago) but is still technically within normal range.

I'm frustrated b/c my symptoms point to hypo - yet my doc is resistent to do anything about it bc my TSH level is still "normal"...what it sounds like is that they want me to continue to feel bad, and in fact feel worse until the lab finally says i'm abnormal and then they will pay attention to it....this doesn't make sense to me! I'm having all these crazy symptons and they are telling me it's not my thyroid (and of course I haven't ruled out Celiac yet)...but honestly these results tell me IT IS MY THYROID (or at least partly my thryoid). I guess i'm just floored that my symptoms and the way i feel are completely discounted bc some "arbitrary" (and I say arbitrary bc they defined the normal range under questionable circumstances from what I have read and have re-figured "normal" more than once...) test says so?

I'm frustrated b/c if not for this board, I wouldnt have known enough to even push for the TPO test...I had to really fight for it, only to have it come back as showing hashi's yet nothing is wrong?....even still they didn't test for FreeT3.

I'm getting the urine test for cortisol this weekend (ruling out cushings or adrenal probs)

My Vit D and Ferrati were also "normal" by their standards but literally half a point or less from being too low...I will look into taking some supplments bc who knows, maybe that will help me some (had to push for these as well)

They are still waiting on the results of my celiac blood test. We shall see....however, I'm concerned b/c I have noticed hashi's and celiac often go hand in hand.....and in fact untreated hashis can induce celiac....so even if i dont have it now, i could very well get it later bc it's untreated. Also, i'm concerned by my dizziness/lightheadedness...last time with graves, I literally passed out at work and was diagnosed at that point...i really dont want to have to get that bad before a doctor listens to me.

Any thoughts or anyone have a similar situation? If in the Chicago area - do you have recommendations for a doc that can look beyond a lab result?

[Jatango]

I'm a hashi's patient too, you really need to read up on:

www.stopthethyroidmadness.com

Then join the yahoo group "Natural Thyroid Hormones," they'll get your head on straight. It's a bit busy, so keep on posting and someone WILL help you. I hope you improve soon!