Massively over dosed.

What are your Free T4 results ?

I also noticed you had the outdated uptake scan. Not accurate but sometimes a good enough guess when the results are in the 80 + to 90 % range.
What were those results ?

Hopefully they have done better antibody tests by now so you will have an accurate diagnosis.

Also.. what dose of MMI have you been on up till now ?

OH NO! The message sent funny... Here are more of my results...
Thyroxine,Free(S)- was 1.1, now 0.7 ng/dL

Triiodothyronine(S)- Normal range: 80 - 190 - was 111 in september and now 92 ng/dL

Thyrotropin Recep Ab- Sep 06, 2012- 5.46 IU/L now 3.29 IU/L. Normal range: 0.00 - 1.75

Uptake was done to rule out postpartum thyroiditis- we were trying to get pregnant...
"THYROID UPTAKE RESULTS
4.5 -hour = 24.0% (6-hour normal = 3-16%)
IMPRESSION/CONCLUSION: There is diffuse homogenous uptake ofradiotracer in the mildly enlarged thyroid gland with elevated uptake at 4.5 hours.

Hope this all posts ok- I tried to post it all before! I'm obviously hypo now- I was taking 10mg MM twice a day, reduced down to 10 mg once a day, starting on Saturday. My endo said he is happy with the Thyrotropin Recep Ab under 4.5 and claims we are on the right track. I'll be getting more labs in two weeks to see if the medication change is working... Also, my thyroid has also gotten larger- to 10 (mg or g?) Endo not terribly worried, he said this can occur... What do you think? Also, THANK YOU for taking the time to read and post!!!

My thyroid measured around 6-8 (mg or g?) before treatment...

You must have used a greater than or lesser that symbol. The board deletes anything after those. Most all of us figure this out the same way you did.

I'm going to ask one question in case your still available, then start on another post.

We need the reference range for the Free T4 to provide a better response.

"Thyroxine,Free(S)- was 1.1, now 0.7 ng/dL "

With Graves' disease our TSH receptor antibodies work in place of the TSH.

The first thing that happens is the TSH become suppressed as the bodies self protective mechanism notices there is enough thyroid hormone circulating, so it does not send out more TSH, which is a signal to the gland to produce hormone.

When we are being treated with our ATDs, they control or hormone levels and are a mild immune suppressant, gradually lowering our Graves' antibodies. During this process, while we still have active antibodies, they continue working in place of the TSH. Thus a properly medicated Graves'' patient will have correct FT4 and FT3 levels ( adjusted individuals for each patient) and a continuing suppressed TSH.

This does NOT mean the patient is hyperthyroid. It means they are successfully managing their Graves'' as they work towards remission. Plus, they feel normal.

All Graves'' patients, no matter their choice of treatment, must always view the TSH with suspicion. It can verify FT4 and FT3 results occasionally, and it can send up a big warning sign if it rises, telling us " somethings wrong here!

Post surgery and post RAI patients have the biggest problems here because they still have a mix of stimulating and blocking TSH receptor antibodies affecting their TSH results, yet the majority of doctors fail to take this into consideration, and thus wrongly under medicate these patients T4 medication, resulting in being hypo, but told their numbers are normal, and the symptoms are something else.

TSH should never be used to judge thyroid medication doses. Antibodies can always shift in our lifetime and can cause a "false" TSH result. As long as we judge what''s going on by the FT4 and FT3, we''re good to go.

As an example, I''m nearing my eleventh year since I needed ATDs, nine years since I needed a little extra T4 medication ( due to blocking antibodies) and I still rarely bother with a TSH test. Anytime I want to know how my thyroid levels are doing I test my FT4. Occasionally I also do a TSH, but that is to be sure my antibodies are still behaving themselves. I can do that because I have years of history and I know my own personal patterns. The point being I''m a Graves' patient and always will be, Same as everybody else with Graves'.

Many patients on ATDs deal with this same battle, doctors looking at our suppressed TSH thus over medicating us into hypo territory. This is the reason you will find unhappy patients on ATDs, wrongly blaming the pills or the disease itself for how bad they feel. The truth is it''s hypo they dislike. And this is the reason you will find these types of questions over and over in groups like this.

There are good doctors out there that clearly understand the role our antibodies play, and do understand how to correctly dose ATDs or replacement hormone, but they are few and far between.

So that's a start on the TSH aspect.
Checking to see if you have responded

Regarding the thyroid getting larger.

This is caused by being hypo. When hypo the gland responds by enlarging as it attempts to produce more hormone. The body is trying desperately to correct the situation caused by the over medication. It's a basic survival mechanism.

When the gland swells, there is increased blood flow. When a patient is continually kept at thyroid levels too low for their personal requirements, this swelling and increased blood flow also results in an increase in Graves'' antibodies. ( going backwards for sure)

The only reason for the uptake scan is to judge the amount of RAI the patient will need to kill the gland.
Antibody tests tell us accurately if the cause of hyperthyroid is Graves'' or not.
A non-invasive ultra sound diagnosis possible nodules.

Years ago we did not have accurate antibody tests, then the uptake was a better guess than nothing. It is no longer recommended because the radiation and high iodine content can cause increased hyper and increased antibodies. Those increased antibodies occasionally cause the beginnings of thyroid eye disease. Too high of a risk, in case the hyper patient does have Graves' disease.

Eventually the doctors will catch up with current research, but unfortunately this takes a very long time.

With your very moderate uptake results, you really would never know if this was Graves' related if not for the antibody test. Sorry you got caught unawares. It happens all to often.

Parmin... Bless your heart for your thoughtful post- I'll need to go through it more thoroughly- line by line almost to ensure comprehension. Thank you so very much...

Thyrozine- Reference Range: 0.8-1.8

Thoughts???

Hi Courage,

I have read your previous posts, and wanted to reply, but ran out of time. Your doing great reading so many opinions. That's the way to get started. So it seems today is the best place for you and I to start, since basics matter.

Give yourself time to educate yourself before making any permanent choices. There''s more there than meets to eye. I understand your hurry, but Graves'' just can't be rushed. We are dealing with our immune system, not just an over producing gland. Both the immune system and hormone levels are of major importance to a developing fetus. If there was a fast, easy fix we would all have chosen that.

Back to how Graves starts.
First the antibodies skew the TSH.
Next the Free T3 rises.
Finally the FT4 rises.

When started on ATDs, these numbers come down in reverse order.

First the FT4 comes into range. At that time to dose is reduced to prevent the patient going too low( hypo). The average dose reduction is one half, but that can vary depending on the exact circumstances. The FT3 is often still above range because it is slower to come down. That's normal.

Next the FT3 comes into range. We have LOTS of FT4 and only a tiny bit of FT3, plus the FT4 is the main storage hormone...thus our dose is based on our FT4.

A very few people will have T3 problems, but that''s not necessary for this conversation. Knowing the basics is the place everybody should start.

The last number to come into range will be the TSH.
When the patient is medicated properly, the TSH remains suppressed until the antibodies lower to remission standards. Average time is 12 to 18 months..but studies show the best odds of long term remission is for patients on ATDs for 4 years.
Remember though... studies include a mix of causes, and a mix of socioeconomic factors. It takes time to understand these differences and is often over looked by our doctors and fellow patients. It's not as black and white as some seem to think.

This is where finding a support group can be a huge help. Real stories by real people. At first when joining it looks like everybody is ill and having problems. That's the nature of boards like this one, with only a few long term members and their stories. I've made many wonderful friends in groups like this, and once they are stable or in remission, they really have others things to do besides posting here. So don't let that fact discourage you.

I''m going to stop for a bit and come back and work out your FT4 . Thanks for the dates and ranges.

To start I have listed your results in an easier to view format.

Aug 27, 2012-

Sep 26, 2012-
TSH 0.02 (0.3-5.0 )
FT4 1.1 ( 0.8 - 1.80 )
T3 111 ( 80 - 190 )

Nov 14, 2012
TSH 9.2 (0.3-5.0 )
FT4 0.7 ( 0.8 - 1.80 )
T3 92 ( 80 - 190 )

Given there are only 20 days ( if I counted right) between the two labs posted.

I think you started the MMI sooner than 20 days ago.

Date started MMI ?
Starting dose of MMI ?

Nope, it's more than 20 days... I started 20 mg of MM (10 mg twice daily) Sept 6th. Been on that same dose until now...

Thanks for sticking with me Courage. This is a great example of a tiny typo that could have resulted in incorrect replies and confusion for you. I do tend to get wordy, but once in awhile, it can really pay off.

We have started page two of this thread now, so I'm bringing with me the corrected labs and dates. A short scroll to the top of this page still will show your original post, and the date Sept 26th, so you can see what had me wondering.

Aug 27, 2012-

Sep 6, 2012-
TSH 0.02 (0.3-5.0 )
FT4 1.1 ( 0.8 - 1.80 )
T3 111 ( 80 - 190 )
TRAb 5.46 ( 0.00 - 1.75 )

Nov 14, 2012
TSH 9.2 (0.3-5.0 )
FT4 0.7 ( 0.8 - 1.80 )
T3 92 ( 80 - 190 )
TRAb 3.29 ( 0.00 - 1.75 )

So 10 weeks of 20 mg MMI.

Your starting Free T4 is within the reference range, in fact it's a bit too low (hypo) for many of us.

New patients starting out the Free T3 advised because it is much more accurate then the total T3 . Total T3 and Total T4 can often be falsely elevated due to our estrogen, and possible other drug interactions. Your T3 is a standard total T3 reference range, thus my assumption.

It's especially unfortunate the total T3 was used in this situation, as it leaves us guessing what was really going on. The FT3 is quite a bit more expensive, there is a time and place where it is very important. This seems strange though since this doctor ran the TRAb twice, so close together. That's also a more expensive test..but antibodies are proteins that live about three months. So testing more often is rather pointless.

Antibody tests are needed at diagnosis, and before stopping meds when remission is suspected. Some patients have their antibodies monitored once a year or so. Given your pregnancy plans, more often makes sense, but saving money on the FT3 and spending on antibodies so soon ...I don't quite understand the goal there. I'm all about wise use of our medical dollars, and how it's best to invest to be sure we get what we need, when we need it.

The reason the missing FT3 is so important or you is because IF the FT3 was still within the reference range, along with your lower FT4, this is termed sub-clinical hyperthyroidism.( normal FT4, normal FT3 and a suppressed TSH )
Sub-clinical hyper is not treated but monitored as it is more likely to correct itself, than progress to true hyperthyroid. Adding thyroid lowering medication to a patient with normal thyroid levels will cause hypothyroidism. Temporary..but very unpleasant.

Here's a good basic article on sub-clinical hyper.
http://www.elaine-moore.com/Articles/GravesDisease/TheTSHTest/tabid/171/Default.aspx

So it may have been that, or it might be you caught hyper Graves' very early. If so..well done !

With your antibody results it brings up another good question. postpartum thyroiditis patients can have lower levels of our antibodies, but with each new generation of tests available, I really don't know what " lower levels'' of these antibodies reads as. I would guess they might be a little lower than yours..but look how quickly yours are dropping.

This goes in your question to Elaine when you reach that point.
http://www.elaine-moore.com/QA/tabid/57/Default.aspx

One thing I do know for sure, rather it is 'super postpartum thyroiditis' or "Graves' lite postpartum" ( made up phrases but it takes less words to explain this way.. LOL ) over the years I've been around and known many women newly pregnant or with new babies/toddlers, as a group they they lower the bar for the rest of us, as most of them seem to spend much less time on their ATDs pre-remission. There will always be exceptions, but I'm thinking of the group as a whole.

Okay.. anybody round to take up the 'where within the reference ranges we need our results to be, to feel best as individuals, and why here 1.1 looks a bit on the low side for many...but not all.

Oh, and Courage,
Yes.. we all know you would have felt symptoms if your FT4 and FT3 were not at their optimal levels. Hypo and hyper symptoms over lap, so it takes time to distinguish between them.

But wait...there's more. :)

When you put together a question for Elaine, be sure to include any supplements or medications you were on as you made plans to TTC. There may be something there that caused the lab results or the 'flare up''.

Estrogen and thyroid hormones compete for the same binding sites so there is always a balance going on.

Hello Paminremission....
First, I must thank you for all of the information that you have given me and taking the time to word things- honestly, a bit overwhelmed, but none-the-less, so very appreciative. I'm reading things slowly, trying to take it all in... Hope you don't mind if I continue our conversation with some comments and questions...

I'm going to search more into my recent testing within the last few months. If I find something else, I'll definitely post to get your opinion. You words have got me thinking, hoping and praying that I'm taking the appropriate route. Also, I very much want to continue with having children, however, I live by the philosophy that haste makes waste and willing to solve this the best way, not necessarily quickest. I will be patient with this... I want a positive outcome...
I've heard time and time again on this site that TSH is not a place to truly base amount of meds, etc. My TSH is what triggered the ball rolling with trying to figure out what was wrong. I was then notified that antibodies were elevated- doctors did not give me specifics at that particular time, but urged me to get more blood work, which i did. The uptake scan was to rule out postpartum thyroiditis, according to my doctor. Is this the case? Furthermore- I wasn't experiencing many symptoms at all with my untreated Graves'- hair loss and tiredness was it, and I wouldn't have sought out a doctor with those ailments. Both symptoms were excused in my mind with having a baby. My blood pressure and pulse was increased, now back to normal with medications. Are there more symptoms that would be worth discussing? Any specifics that would leave me to a better understanding of what exactly is going on with my body? I guess I'm confused by this whole process- do you think that postpartum thyroiditis is completely ruled out? Or would you stick with my Graves diagnosis?
You said:
"The reason the missing FT3 is so important or you is because IF the FT3 was still within the reference range, along with your lower FT4, this is termed sub-clinical hyperthyroidism.( normal FT4, normal FT3 and a suppressed TSH )
Sub-clinical hyper is not treated but monitored as it is more likely to correct itself, than progress to true hyperthyroid. Adding thyroid lowering medication to a patient with normal thyroid levels will cause hypothyroidism. Temporary..but very unpleasant. "
Made me lose my breath a little- read the article, still a bit confused but I will continue with more research here...

Would you encourage me to write Elaine with a question? Youa re hinting at that, just wanted to make sure I understood that correctly...

Big thing that has been on my mind- you refer to estrogen and how it may flare things up- I was literally nursing my son up until a few weeks before all of this craziness. I was weaning from June til Aug, tested late august and the TSH triggered my doctor's interventions... I brought this up with them and they don't believe that my breastfeeding had anything to do with it, but I'm suspicious... Thoughts? With going through infertility- I'm well aware that hormones are HUGE. I just always had that in the back of my mind- your comments have hit a sensitive spot with me... Would Elaine be informed on this?

Also, just to get your opinion...

I was referred to my endocrinologist by my reproductive endocrinologist. The reproductive endocrinologist is a phenomenal doctor and he specifically recommended this endo. I give my endo a bit of trust because of how my other doctor feels about him. But, I don't want to be naive. Also, these are all individuals from the Mayo Clinic- a facility that happens to be one of the top endocrinology in the nation. However, I don't want to be swayed by the labels- I want a doctor that will truly help me. with that being said, there is a doctor that has had published articles and research on postpartum thyroiditis- I'm inclined to contact him- even just to get the explanation on whether the uptake scan truly ruled out the thyroiditis. Would you recommend me do this??? Or am i reaching for something that really isn't there? Maybe you could provide me with a reality check :)

I apologize if I sound like I'm not retaining all of the information you have provided- takes me a few read and further discussion to truly learn. Please know how much I appreciate this. The board is very important to me- you are helping me with my journey. With the infertility board, a woman gave me information that I directly took to my doctor and I firmly believe that it played a huge role in me finally conceiving. I'm hopeful your words will shed some light and make a difference in my Graves journey. At the very least- feels comforting to know someone may possibly understand me :) Thank you so very much.... Colleen
* Also, sorry about the rambling and poorly organized post! I just kept on typing and didn't lay it out very well!!!

Gosh, as I'm reading, it looks like I'm sub-clinical... I'm going to start digging for some more test results... If I'm sub-clinical- why wouldn't my doctor have said this??? I may be missing a point or confused on this- my apologies, if so...