Should I also push for an ultrasound?

Hi Courage, have you ever had a thyroid ultrasound before? If not, definitely! They found nodules for me that they have to do follwup ultrasounds to keep track of though it's probably fine. I hope you can get out of being hypo - I think I'm in the anxious crazy hypo part myself.

Sorry you are still dealing with hypohell.

And, rather than wanting your TSH to decrease, it's really better to focus on your actual FT4 thyroid hormone level (thyroxine, free).

People who are properly medicated will have FT4 levels near the high end of the range.

Unfortunately, your most recent FT4 level wasn't even at mid-range.

Yes, your level has improved and that's why your hypo symptoms have improved. However, you will not be rid of hypo symptoms until your FT4 level is more appropriate - sorry.

I suspect the endo hinted at being close to remission due to the "return" of your TSH.

Rather than being a sign of remission, the "return" of TSH when the patient is driven hypo is a sign of an intact HPT (hypothalamic-pituitary-thyroid) axis.

It amazes me that endos don't routinely order ultrasounds. None of my 3 former endos did.

My current thyroid doctor, an internist, has me get annual ultrasounds.

Without a doubt, I think you should ask for one.

I do agree with what Carol said...however...you are on a very low dosage of MM and you are still quite hypo with TSH showing higher than it should which in your case...indicates hypo.

As Carol mentioned...lowering your meds more will bring up your FT4 and lower your TSH...which in turn will help lower your antibody production. You will feel much better and get your antibodies low enough to test remission. Its a slow and frustrating process but very necessary and rewarding ...slow and steady wins the graves race.

If these were my labs I would insist on a antibody test to see where you are truly at...its kind of important to know if your TSI is changing.

I see a familiar pattern with your labs that coincides with my own...depending on where your TSI is at...I think its time to see if remission can be tested. I would do one more reduction...wait 6 weeks, get labs run, see how you feel and test remission...Big Hugs...Kathy

You guys are awesome... thank you a million times over...

I'm hitting the books and internet today to brush up on my knowledge before I head into that appointment tomorrow... I'm hoping it goes ok. So, my basic understanding and what I should be working towards:

TSH- should be on the low end of range. Typically takes a long time to go up after treatment begins- in my case, probably went up within 4-6 weeks- more than likely due to my huge MM dosage.

FT4 should be mid-range to higher. Funny, when I was first diagnosed, my FT4 actually seems a bit hypo. Combined with my meds- no wonder why hypo hit so strong. I'm sure I'll find it in my studying today- but where should my FT3 be?

I will be asking for an ultrasound.

As I look back with my correspondence with Elaine- from the get-go she told me I shouldn't be medicated. She also said that my antibody levels weren't even that high. I'm hoping my body will finally get a chance to heal from this roller coaster. By the way- my hair is now falling out at full-force again. I'm wondering if it is because my body is adjusting to the new dose and going even more hypo again. I'm also going to ask my labs be done again 3-4 weeks from now, hopefully to catch hypo before it hits so strongly again and heads quickly in the wrong direction. Or, possibly my new doctor could listen to my symptoms- imagine that! :) Like you said, Kathy, I want to see my current antibody levels- I'm a bit dumbfounded as to why it wasn't ordered this last time around but I will ask my new doctor.

Question- so, with the recommended levels you guys have explained to me for my TSH, FT4 and such- are those recommendations for any person or a person with Graves receiving treatment- indicating effective treatment? Not sure if that questions makes sense... Where should those levels be for a typical individual?

I may post a few questions as I go today- I just really want to be prepared and need to weed out this doctor if he is not willing to help me appropriately. I appreciate everything, guys!!!

Again...everyone is a bit different. For me...my TSH needs to be at around 1 or a bit lower or a bit over...right now my TSH is at 1.1 My FT4 is at 17 with ranges of 10.5 - 20. I feel very well with these levels. Learning that I need to be at these levels took me over a year to discover. I do have some feel well leeway but that window is quite small for me so I have to keep on top of where I'm at. I've posted my levels just to give you an idea of what you may want to shoot for.

I am very fortunate to have a very savvy GP...she also has graves disease and is well informed. She unfortunately had RAI and greatly regrets it...she promised me at the beginning that she would do everything in her power to prevent me from having that same fate. My GP was well aware of the changes in TSH ranges even though they are not practised by most docs. That was over 7 years ago that those changes were adopted but not practised. My doc knew that the lower end of TSH was optimum ( around 1 ). That is true for us all because TSH levels are universal.

Your FT4 and TSH are directly connected providing your antibodies are not interfering. When you are close to remission you show TSH and any med changes that effect the FT4 will also effect the TSH...so pay attention to that.

Yes...if you can get an ultra sound...do it...its a safe and accurate diagnostic tool. I wish I had one done.

The thing that breaks my heart the most is when newly diagnosed patients are given massive dosages of meds based solely on TSH. They plummet down the rabbit hole into hypo hell. Aarrgg..Big Hugs...Kathy

I think your FT4 at 1.2 isn't too bad (it would be fine for me) but your T-3 is too low. I would ask new doc for the FT3 tested for sure.Your antibodies go up when you're on too much meds too.

The universal rule for properly medicated Graves' patients is to expect a suppressed (below-range) TSH and FreeT4 level above mid-range and usually closer to the high end of the range.

The FreeT3 level usually falls into place around mid-range or slightly higher.

You've only had your "plain" T3 ( tri-iodothyronine) level checked - that result is often falsely elevated Even then, your T4 level has been hypo all along.

Healthy people have FreeT4 and FreeT3 levels just as I described and is documented in thyroid textbooks.

Think about it - the Graves' antibodies work in lieu of TSH and that's why our TSH is suppressed.

So, if we start to produce TSH *when we are not hypo*, that's a sign remission is imminent.

Colleen - if you started meds back in August, I can see why Elaine said you didn't need them - your FreeT4 level was hypo.

I think your doctor was confused by your suppressed TSH.,.

It's possible to have Graves' blocking antibodies - they are included in the TRab antibody test and you can see that your level was elevated.

Blocking antibodies can negate the effects of TSI (the stimulating antibodies) and made the patient euthyroid (normal thyroid function) with suppressed TSH.

Or, those ever-powerful blocking antibodies override the effects of TSI and make the patient hypo.

I think that's what was going on with you back in August.

Taking ATD's made you more hypo than you were.

I'm inclined to recommended reducing your dose now and getting labs in 4-6 wks. tops.

I made some typos in my post above......

Both your FreeT4 level *and* T3 level were hypo back in August.

And, again, I can see why Elaine said you should have been started on meds.

The more I think about it, the more I'm wondering if you could just stop taking meds......you might want to ask Elaine about that.

I would just like to add...when remission is happening...not only does your TSH and FT4 effect each other...it also effects the FT3. They are tied together. So...if your TSH is high and your FT4 is low...your FT3 will also read low. If your TSH is low and your FT4 is high...your FT3 will also read high. The FT3 does not move as much as the FT4 unless you have a separate issue with the FT3 like...your bodies not converting correctly or you suffer from toxicosous. When the thyroid hormones travel together and your labs show this consistently...it's very safe to say...remission can be tested...Big Hugs...Kathy

First- thanks for all of the info everyone. I will be printing off your posts and adding it to my collection of information. I appreciate all of your help and I regard it highly. I'm so lucky to have the information you all have provided, as well as your personal stories to guide me through this...
Welp, saw my new endo today and it actually couldn't really have gone much worse. It's amazing, my husband came along with me (he's been researching a ton and reading the posts on here as well) and as the appointment went on I just kept on thinking, this isn't working and this doctor doesn't get it. I'll just mention some of the highlights:
1. Stated how he's completely happy with my results and all levels are normal.
2. Within a 5 minutes, he goes on how I could stop my meds, then he said I could continue my meds, and get this, goes on a tangent on how RAI is a viable option for me in the future!!!
3. Won't order me an ultrasound. He said he felt nothing. Even when I asked again- he said it is not necessary.
4. Will not test my TSI or Trab now, only in 6 weeks. Also, doesn't believe in FT3, only Total T3- better test in his explanation.
5. I feel he is not informed as to how Graves will impact a pregnancy. Vague answers.
6. Questioned me as to why I'm dividing my dose- told me not to.
7. Apparently now I have a "goiter"- he failed to tell me the size of my thyroid. He just said it was enlarged. I stated how my thyroid was slightly enlarged last time- he said that he and the other doctor I saw have different ways of measurement.

So, my husband and I talked it over. I want remission and could be in it now but with the studies I have read, it could be beneficial for me to stay on a low dose- a minimum maintenance dose- for just a while longer. My plan in this- let me know what you guys think...
I'll reduce my meds- 1.25 mg MMI tomorrow. I have no idea if I should divide it- I'd be looking at 1/8 a pill then- might be a bit tricky. I'll do it if you guys recommend it, though. I'm going to call in one week to leave a message for him- stating my throat is worsening, and requesting an ultrasound. I'm not entirely fibbing here- my throat is actually getting worse. If he doesn't order it, I'll start bugging my GP, even though she has denied it to me before. I don't get it- why do they deny me this ultrasound? With my med reduction- I'm planning on holding out for 6 weeks and seeing my results. I'm also going to be contacting Elaine about my situation and see what she has to say. I'm also going to be bugging her about the whole pregnancy bit. I will also be contacting my reproductive endocrinologist to get him in the loop. From there- I'm not wasting my time to find another doctor. If he can give me the prescriptions and order me the blood work, I'll just do this on my own. I'd rather be guided by my research and you guys than a doctor that doesn't get it. I feel like I'm searching for the holy grail with finding a good endo, or any doctor for that matter, to help me.
My hopes- to go into remission soon. Give my body a break to heal from this craziness, and shoot for pregnancy next fall- possibly November or something. I'm tentatively planning on this but I'll be taking Elaine's suggestion with all of this and tailoring my plans. What do you all think??? If I need a reality check, please don't hold back.

Sorry to say that you endured a typical endo appointment.

Even though I've been hearing endo stories for almost 6 years now, I still find it unbelievable that a doctor notices a goiter and doesn't order an ultrasound!

I doubt doctors know the ins and outs of each patient's insurance because that seems to be the only reason why someone wouldn't get one. Even then, if a doctor thinks one should be done, the patient should be given the option.

I think your ideas are excellent and I support you with every single one.

I took my 1.25mg in one dose......I know others divide theirs.

Sad state of reality when things get to this point but, you gotta do what you gotta do if you want to be healthy.

By the way, I think you know that Elaine guided many of us into remission and beyond. When I say "beyond", I'm referring to people such as myself who went hypo after remission.

Please be aware, though, that she sometimes makes typos in her responses. So, if something doesn't sound right, I suggest that you post another question to her, link her earlier response and ask for clarification.

And, do you think the reproductive endocrinologist can help? I won't deny that I think you might need some replacement hormone (that's really what your August labs indicated.....)

Hi Courage, sorry to hear about the typical endo - I remember the huge let down I felt when I saw my second endo who immediately began to talk of TSH. Just an idea to try on for size, but I would encourage you to fire this endo immediately - if you have enough prescriptions to cover you for a couple months, don't try to get tests out of him, just GO. You can always order your own tests online in the meantime. My mistake was I stuck around and got stuck and as I got more I hypo I lost more motivation to find someone else and also began to feel uncomfortable to leave because my new endo has done some things right as well. Your initial clarity is the best.

Oh also, you can have nodules on the under side of your thyroid that they can have a hard time feeling like mine - their manual exam is not definitive.

I too am not surprised by your new endo's response....((((hugs))))...its always so disappointing. Personally...I do believe you are very close to remission and it could be tested...but...you know your body better than anyone else. Since you do have intense reactions to spiking after a dosage change..although typical to a lesser degree for most...I think it would be wise to do one more reduction...wait your 4 to 6 weeks to see where you are at and then test remission.

Someone here...I cant remember who...suggested that when taking tiny amounts of ATD's and it being impossible to split the pill down smaller and still take it at least twice a day was to dissolve your daily dose into a small amount of water and split that up into your equal daily amount. Although I have not tried that myself...I thought it was a brilliant idea...Big Hugs...Kathy