Newly diagnosed - after two years!

[springs]

I have just recently been diagnosed with Hashimoto's. I had graves disease with my second pregnancy back 10 years ago. For two years I have been told my symptoms were from early menopause (which now may be attributable to the Hashis) since my TSH was normal. Only after seeking out a new endo who ran the full panel, has this been found. She is now running more blood work, ultrasounds, etc. I have struggled and struggled with severe anxiety, muscle pains, joint pains, fatigue, shakiness, headaches, blurry vision in one eye, just to name a few. I have so many questions but wonder if anyone can relate to the frustration of not being diagnosed. I now understand it can take a while to feel better after figuring out the right course of treatment. Today my flank, back, shoulders and legs hurt so bad after a busy weekend. It's just so frustrating. But at least I finally know why and am looking towards the light at the end of the tunnel. Very thankful I sound this board.

[NastyHashi]

That's interesting. I have a similar problem but with me, my TSH is all over the place, but the numbers associated with TSH (Free T3 and Free T4) are always within the normal range.

I too get that shakiness feeling. Its a bit more odd for me cause Im a guy and graves usually affects women. "Officially" I've been diagnosed with Graves' and Hashimoto's, or Ha****oxicosis as some doctors call it.

Have you had a TSI (Thyroid Stimulating Immunoglobulins) test yet? How about your adrenals? ACTH? Catecholamines? Cortisol?

For me, since my testosterone is also very low, they are starting to test me now for Cushings as well, thinking my pituitary might be playing a part in this mess since my TSH is all over the place (between 4 and 22 within days, with less than 5 being normal). I have to go for a pituitary MRI next week and just gave a gallon of blood this morning.

Do you have a copy of your labs? If so, you may want to post them. A lot of folks here can chime in - none of us are doctors of course, but we've been through the wringer already.

[springs]

Thank you so much. Here's my labs:

TPO - 260 (high)
Anti-thyroglobulin Ab - 35
TSI - 107% (?)
Free T4 - 1.11
Free T3 - 2.7
TSH - 2.498

When I have flareups, I get terrible flank pain which led me to believe it is my adrenals. I was also been under tremendous stress when it all started two years ago with 2 deaths in family and extensive dental work. However, AM cortisol has always been normal. New endo gave me sugar tester and that always seems to be fine too.

Any comments greatly appreciated.

[NastyHashi]

ok, like me, you have "Graves' Tendencies" if not Graves'. I also have the TSI antibodies which are indicative of Graves. My scores in the past have been:

185
175
170
60

I can tell you that when my TSI was at 60, the panic attacks completely disappeared and I had a period of about 1 full year of complete "remission" which is common with Graves. Now, my TSI is back up again and sure as heck, so are my symptoms - shakey, tired, weak, trembling, "zaps" in my muscles...

I told my endo I am absolutely positive that its the TSI that controls how I feel. Mind you, I also have the TPO and TG antibodies just like you and those are indicative of Hashimoto's, but for me, when my TSI is high, I feel like crap and for that one year it was low, I felt perfectly normal.

You'll probably find if you get tested repeatedly that TSI number will fluctuate - the higher it goes, the crappier you'll feel. I know when I was at 185 (185%) I felt my worse EVER - constant panic attacks, tremulous....it was bad. As an additional note, for me and others I've heard from, STRESS or major STRESSORS tend to set the TSI in motion to the high side - a death in the family, marriage problems, money trouble, work trouble - any serious stress seems to set my TSI off and it takes forever to come back down.

Unfortunately for me, this has been this way for almost 8 years now - 5 with a diagnosis and STILL no treatment.

They can't give me hormone becasue when that TSI decides to get going, you will feel VERY shakey yet at the same time, they don't want to pull your gland out because it "appears" to be functioning ok. That's been my problem but I am real close to getting my thyroid removed finally. I will be very glad once its gone and am so tired, physically drained from feeling nervous all the time and I am positive it is not psychological at this point since I've found the correlation between TSI and nervousness.

I am not a doctor but since you have that TSI and the things you describe, unfortunately, after about 8 years of changing endos, you'll probably find out you do in fact have Graves' disease or at the very least, you have Hashimototo's and Graves' or Ha****oxicosis as they call it now. The best thing you can do is INSIST on receiving multiple TSI tests along with full thyroid tests periodically. You seem to be at the beginning of a very long journey unfortunately. I can tell you from my own experience that you will absolutely need to get schooled quickly in all things Thyroid so you can direct your course of treatment. If not, you will NEVER be properly diagnosed. Doctors don't know squat about Ha****oxicosis.

[springs]

Thank you so much for your reply. You have no idea how much you have helped. I really started to think I was crazy, having felt so for two years. What I dont' understand is why it says that the TSI is normal as long as it is under 130?? Do you have ha****oxicosis if both hashi and graves?

[NastyHashi]

Because those who have never had it made the reference range. Scientifically proven or not, no one will convince me that TSI is not linked to my "crazy factor". The higher the score, the crazier. 105 is still a moderate level. 180 was horrific. I felt like I was going to jump out of my skin. 60, on the other hand, felt like I was disease free and of right mind and not jittery at all. I've been tested several times now and I too toggle anywhere between 125 and 160 usually. Even 125 which is right at the "normal range" I'll still have symptoms. I can almost guess my TSI score by the level of jumpiness I feel on any given week.

My endo for the first time ever called my disease ha****oxicosis just a few months ago. Before that I was officially "Hashimoto's thyroiditis with Graves' tendencies" and other endo's have just said I have Graves' straight away, although my TSH is never low enough to fully convince anyone, even myself.

Normally with "classic" Graves, someone will have like a ZERO or very low TSH. Mine is always high, like 7 to 22, indicative of Hypothyroid, not Hyperthyroid so I have a few other things going on too, possibly with my pituitary gland which controls TSH and a few other vital hormones. My problem is that my Free T3 and Free T4 are always normal, like yours. I think its just a push/pull type of thing. We are hypo but when that TSI kicks in it speeds us up so we have one thing slowing us down and another speeding us up and when we go to give blood, it looks normal. What the docs cant see are all the intra-day fluctuations. They can only capture a moment in time with a blood draw.

If you want my un-qualified opinion - the only way I will ever be cured is by thyroid surgery to remove my gland. I am absolutely convinced of that and have resolved myself to that fact. You cant stop a speeding train and you cant control something that is so out of control with meds.

How's your body temp and some of the little things like below?

Body temp? Im always high, about 99.2
Sensitive to sunlight? I am very.
Slight tremors in muscles?
"weird" things happen after eating - heart speeds up or get very tired or short of breath or something else weird.
skin changes - rough/dry patches, excema
hair is crummy
overall appearance just looks different, like you've aged

[springs]

Wow you have hit the nail on the head. My worst symptoms which I guess is from the severe anxiety is my tight jaw. However, I have undergone extensive dental work in the past year involving a new denture plate so I could never tell what the he** was causing the headaches, jaw, facial pain. I also thought I was suffering from adrenal fatigue with two deaths in family at the same time as dental work and sudden menopause. (It's been quite a battle!) I never had anxiety so I really didn't know it could cause all these symptoms. Yes, I have muscle spasms/twitches, a terrible pain in my flank on flareups, I look horrible, terrible muscle pains/weakness in legs and arms, daily headache, total exhaustion from any overexertion or overdoing it (wedding, party, etc) and weirdly totally intolerance to alcohol, one beer and I have a terrible hangover headache. I am wondering too about my pituitary so let me know how you make out. I went today for ultrasounds. Do you have any nodules, goiters, etc. Thanks so much.

[NastyHashi]

One of my first things that actually got me diagnosed was hangovers believe it or not. I used to party pretty hard but never had a problem with hangovers. The year before I discovered the problem I noticed if I had like 5 or 6 beers I was dying the next day as if I had 30. I eventually quit drinking totally because of that.

I have had multiple ultrasounds. Just had one 3 weeks ago. Tech said quote "of, that's ugly". My wife, ironically, has clear cut hashi's with a nodule. I have no nodules but we went for our ultra sounds together and hers looked perfect, other than the one nodule and mine looked like the surface of the moon, filled with scar tissue and bumps and bruises, very typical of bad case of hashi's the tech said. The thyroid should look like a boneless skinless chicken breast in feel and consistency. Mine was all beat up and very firm, like scar tissue.

My thyroid is slightly enlarged but it does blow up and retract at times. Sometimes it shrinks down and I feel like my throat is clear and other times it blows up and is hard to swallow and full feeling. Usually when it shrinks quickly is when I start getting panic attacks. I don't know if it is dumping a lot of hormone and shrinking down or what but that's what it feels like.

[springs]

Wow, think it's just a coincidence both you and your wife have it? Are you or were you (and/or your wife) a nervous type person? Do you have any eye issues? My one eye blurry and my eyesight totally changed in last two years - can no longer see fine print. It is true that it is difficult to treat hashi's and won't you eventually go totally hypo and then take meds to feel better? Thanks and sorry so many questions.

P.S. I have been told by someone that since my anti-thyroglobin were normal eventhough TPO 260 that I don't have Hashi's???