oh how cool, that lady just posted ... her name is MaryPoppins. I will message her and see if she can check my post or give you an idea if this is also what happened to her.

Hi nat wow that is some great info there it will take me a couple of reads before I understand but il get there so thank u so much! :) iv been looking into hashi's myself to see what I can find,I felt so bad the other day I could hardly move through lack of energy so I went to hospital for some bloods to be done as my Endo had told me to do if I feel too bad,they didn't take any bloods when I got there and just went off the ones I had done three weeks early and told me I was hypo lol which I already knew! I thought they might have wanted to see how much more I was under as I was still taking ATD as told by my doc but they just told me to stop my ATD for a week then go back on them every other day and they will get me an appointment with my Endo sooner so off I went home as weak as a snail lol thank u once again nat :)

Hi Faceache,
My story in a nutshell: I was diagnosed with Graves' and rushed into having radiation quickly. Withing 3 months my endo expected me to begin to feel a little improvement but instead my symptoms were of both hyPer and hyPo. He kept treating me as though I was hyPer for a few more months while I nearly went crazy- dizzy, couldn't sleep, couldn't ever feel full when eating, a mental mess. Finally he mentioned that I may also have Hashi's. I have antibodies for both. I chose to have a thyroidectomy last March after giving a good try to anti thyroid drugs and not making any progress. My pattern now is to feel an improvement for around 2 months then start having symptoms come back full force then gradually repeat they cycle. I had to change endos because mine was in a large teaching hospital and he was never available. My new one is moving to a new office this week as I wait for my labs to get read by her. I'm so sorry you are suffering. Although I've been dealing with this for about 2 years most days I can't remember most of the basic facts. These guys are an amazing source of encouragement and helpful information. I could never have kept from being overcome by depression without this bunch. I am so sorry you are dealing with all of this. I do recommend that you try to get antibody tests for both Hashimotos and Graves so you can be certain what's going on in there. There isn't a lot we can do to make an autoimmune disease go into remission but information is better than not knowing. And there is hope...don't ever, ever, ever give up on feeling an improvement in your health and having a more normal life. Hugs to you!

nursenat gave a great explanation on how this works. Thanks nursenat. Although we share the same disease and we have commonalities...we are individuals with individual challenges...but...the basics are the same.

For me...I am extremely sensitive to hormones levels...I had a thyroid storm with my FT4 being just a few points above my high range so my wiggle room is very small. I have to keep a close eye on my levels.

I was put on PTU in the beginning for 2 reasons...my levels in general were not considered very high and I also had an acute case of TED. As Yorkylass pointed out...its a milder ATD...what that means is...it stays in your system for a shorter period of time so your dose will be higher. 100mcg of PTU is equal to 10 mcg of MMI. Regardless of what ATD you are on..its best to divide your daily dose into 3 equal doses....this allows the drug to stay consistent in your system which translates to better more consistent levels.

I was only on PTU for 3 months when I went hypo. Like you...I was not educated enough to know what that meant. My docs wanted me to stay on that same dose of PTU to " allow my thyroid to heal "...hogwash! I should have had my doses lowered instead. I was kept hypo for over a year...it was hell. The people here helped me understand how it all works and when I finally got my head around it all...I took charge.

I did what nursenat did...I kept a journal on meds vs labs vs how I felt vs diet....it didnt take long for a pattern to form. This was probably one of the best tools for my recovery. Even though I was on meds for over a year...I tricked my Endo into running all the antibody tests...they refused up until that point. They wanted me to have RAI so I used that as my excuse...I told them that there was no way I could make that decision until I had that info. As it turned out the only one I was high on was my Thyroglobulin...mind you...I was on meds for over a year. This was very helpful info. What this told me was...yes I had Graves but my antibodies were in normal ranges and that I had achieved remission after being on meds for only 3 months. I wrote to Elaine Moore and she confirmed this. Both my endos told me it was impossible to achieve this without being on meds for at least 18 to 24 months...hogwash again.

So...I was loaded with all this info and had an army of supporters to help me do what I knew I needed to do...take charge of my health and recovery. I slowly reduced my PTU until I was able to come off all together. I was eurthyroid for a short while and then fell into hypo...which happens to 20% of graves patients that go into remission. I was hypo and taking various amounts of Syntthoid for about a year until my thyroid...out of the blue....started working on its own. I have been in total remission with my Graves and TED...meaning no drugs at all...for 2 years. I was told by both my endos that I would never be able to achieve this....hogwash again...and that the only way I could have my health back would be by having RAI...hogwash yet again.

As you read and learn more form this board and other sources you will gain the knowledge you will need to gain back your health. One of the most important lessons I learned is this...the experts that we turn to in a crisis like this are not necessarily educated in this disease. This disease does not get the funding that others do because its really not that common...as mentioned on another thread...it wasnt that long ago that Graves Disease patients were sent to insane asylums. Its up to you to educate yourself and become proactive in your recovery...which it appears you are doing.

I agree with the others...you are overdosed and need a reduction. You need to lab more often rather than less. Its really important to have antibody tests run...its critical...its the only way to know what your dealing with exactly. Its important to have the FT4 and FT3 run at least every 4 to 6 weeks. Its critical to log your levels monthly and know how your diet effects you. This may seem like a lot of work...and it is...but the payoff is invaluable. I hope I've made sense here...I know I seem to be rambling...I'm stuck at home recovering from surgery and have all this extra time...lol...I hope this has been helpful...Big Hugs...Kathy

I get the impression that the medical profession does not get much of a grounding in control system theory. I don't think this is the place for a lecture on it either, but one important thing when you are trying to control a system is to take measurements often enough to be able to see what is going on. They seem to tell us that the levels of Thyroid hormones can halve or double in about a fortnight, and this certainly fits with what I have seen. That would actually mean that it would be a good idea to monitor them that often. Ideally once we have found the right level we might then be able to reduce the frequency of testing.

The other important thing is to be monitoring the right signals. If the problem is Graves disease, eg the immune system is producing TSI and stimulating the thyroid to produce too much thyroid hormone, then what we need to be monitoring is the level of thyroid hormones, eg FT4 and FT3. The dosing strategy then needs to be to try to keep those in a range that works. The level of TSH is not especially relevant, apart from giving us an indication that the pituitary thinks we are either too low or too high. It would be really hard to tune the antithyroid drug doses to keep the TSH at some ideal level while the immune system is still producing TSI. Unfortunately it does seem that some doctors (including my own current GP) want to try to do this.

An analogy that might help is to think of your house heating system. If (in winter while the system is heating) you plug in a large bank of electric heaters and turn them on, the thermostat will try to turn down the heating, so the furnace will go cold. If you turn off the heaters and open all the windows and doors, the place will get too cold and try to heat up. But in either case it will probably not succeed since you have taken over control by other means. So the level at which the furnace is operating will not give any guide to whether the house is at the right temperature.

Similarly with our thyroids, The TSI from our immune system has taken over control from the TSH from our pituitary, and then we take over manual control with the anti thyroid drugs. So we can expect the TSH to jump around a bit, and changes there don't necessarily mean too much if the FT4 and FT3 are staying about right. If FT4 and FT3 are a little high, the TSH will go very low, if they are a little low TSH will come up. This is all complicated a bit by the fact that the antithroid drug will also tend to supress the immune system which is producing the TSI in the first place, so the ideal dose may change with time. But the dose should be determined by getting the hormone levels right, not by worrying too much about the TSH level.

Please bear in mind that I am not a doctor, and that the above only considers one situation, eg if there is Hashis toxicosis involved too the dosing strategy might need to take this into account.

regards
John