hi Cindee:

Please leave out the more than and less than signs as the DS boards will not accept them. I think your labs were not completely put in your post. Right?

{{{hugs}}}

Let's try this again....:)))


I received my last set of labs this past week and here is the history so you have it in one place and would appreciate your interpretation of what is happening:

First labs May 27th:

FT4 2.42 range .71-1.76

FT3 7.8 range 1.8-4.2

TSH less than .004 rnage .3-5.0

No new labs taken but thyroid ultra sound in June showed some enlargement. Had Uptake scan which showed 33% at 4 hours and 53% at 24 hrs - which they said was in line with Graves Disease. TSI was taken and showed 185. Tried to test for Hashi's but said there was heterophelic interference so no conclusion.

Started 20 mg per day Methemizole the end of June - Lab Draw

7/29:

FT4 1.24 (.071-1.76)

FT3 4.3 (1.8-4.2)

TSH less than .0041 (.3-5.0)



Dropped to 10 mg per day as WBC was low and ALTI was high.

Lab 8/26:

FT4 .76 (.71-1.76)

FT3 2.7 (1.8-4.2)

TSH .051 (.3-5.0)

Dropped to 5 mg per day - wbc and Alti were all normal.

Lab 9/23

FT4 .86 (.71-1.76)

FT3 2.5 (1.8-4.2)

TSH 1.88 (.3-5.0)

WBC at 4.2 range 4.5.-11.0 so a little bit low but not much

and ATLI is normal. I am now on 2.5 mg per day and Endo is ecstatic with the results and how quickly I've responded. Said she wouldn't do antibody testing at this point and depending upon labs in a month is planning on 2.5 mg every other day rater then 1.25 per day - I asked why not every day - she doesn't think the pill can be cut accurately enough to be consistent.

I feel basically ok - have less energy then I am used to and the numbness I was having is getting better so could be carpal tunnel induced by the thyroid or meds. I think the worst thing I deal with is hot flashes which at my age could be Graves/thyroid meds or menopause - pick one I guess.

So am I responding well or is there other things I should be considering???

Thanks so much.

Cindee

cindee:

That's great that you are where you're at now. :-) I disagree with the Endo about every other day dosing. You've not been on the MMI that long enough for the antibodies. They like to have more consistent dosing which would be every day and not every other day. Other wise antibodies will rise and not come down.

Pill cutters are used to cut the pills consistently.

{{{hugs}}}

Thanks mmz, from listening to you and others I agree with the everyday approach and I mentioned the pill cutter. Guess if it comes to the next reduction, then I'll do the everyday 1.25. What scares me is she is considering stopping the MMI at all and again after reading here - my autoimmune system isn't anywhere near ready for that.
I would just like to level off and stay somewhere for a bit and see how I feel. Its like each med change it takes a couple of weeks to feel human again. This time its been just over a week from the drop to 2.5 per day and I am so lethargic and tired if I didn't have to breathe, I wouldn't......that is not a normal feeling for me and I fight it every step of the way which probably isn't the best choice either..... Thanks for listening and always being there...
Have a great rest of the day.
Cindee

Hi Cindee:

If this Endo will not listen to you (and do ask for the antibodies tests - TSI and TRAb) and stops you before your antibodies are even ready, you may have to find another doctor. Unfortunately so many of us here and on other thyroid boards have had to see more than one doctor before we find the right one who'll help us properly.

Hang in there and {{{hugs}}}

Thanks again for the help and wisdom. When are the antibodies normally tested again? I keep hearing from all of you that staying on low dose for a long time is really the key and it seems to me that most get to the 1.25 per day and kind of hang there??? I feel like I've been a free falling rocket since May and just want to stabalize - can that be done just by reducing the MMI and allowing the thyroid to act normally or is an addition of other thyroid meds the only way to achieve this??

Thank you just doesn't seem like enough...
Have a great night.
Cindee

I believe it takes three months to show from the first antibodies test to the next antibodies test to see if it made any difference.

I asked my doctor to order another TSI to be done and I had done about six months ago. At first he didn't want to because of it being so close together. I explained to him that because I am taking the LDN (Low Dose Naltrexone) and how low the TSI was the last time (it was 24), I wanted to see if it had dropped down to zero so that I could begin weaning off the MMI.

I have been on 1.25 mg of MMI since the middle of May. However I'd been on the MMI for 8+ years. My antibodies could never seem to get down low enough (it would be around 85) for me to think about remission.

Now if everything goes okay, I should be testing remission soon.

{{{hugs}}} :-)

P.S. Have a wonderful evening too...!

***Endo is ecstatic with the results and how quickly I've responded.***

Of course she is.. she has forced the TSH to respond , attempting to correct your low thyroid levels. This happens when we are over medicated. Low thyroid levels are not healthy, and work against healing.. lowering our Graves' antibodies.


This is for hypothyroid patients, but equally funny-/ frustrating for us. Just for different reasons.
Our Holy Miracle of the Infallible TSH Test
http://www.youtube.com/watch?v=tOb2POQGE6g

So they never bothered to do labs before deciding to start you on the MMI and determine a dose. sad....
Then you starting falling, and have not stopped. Agreed. Unfortunately this is common enough.

I remember you thought this:
7/29:

FT4 1.24 (.071-1.76)
might be the right place within the range for you. While that's possible, odds are that is slightly too low. It takes time to feel the damage low thyroid levels cause. At least getting back up to this point would be the first goal.

***Said she wouldn't do antibody testing at this point and depending upon labs in a month is planning on 2.5 mg every other day rater then 1.25 per day - I asked why not every day - she doesn't think the pill can be cut accurately enough to be consistent. ***

The pills will not be absolutely precise.. that's true. BUT we take all the parts of one pill, then cut the next one. So the result is precise in X number of hours / days ( the time it takes to use one pill) . Much more consistent than hypo one day, hyper the next day, rinse, repeat.

Antibody testing is normally done at diagnosis, and when it will determine the next course of treatment. There needs to be a reason to justify the expense.

As fast as you have dropped , with that pretty little TSI to start with, you may be facing a problem others are more likely to run into later in the game. Good thing you've been paying attention. ;)

This may hinge on what your TRAb test results are. do you have fewer stimulating antibodies but more blocking ones ? If that's the case, you might end up like many we have known.. hypo enough to suffer, but not able to find a doctor that will write a scrip for a T4 med. Because our TSH is not bad enough..because we are not Hashimoto's patients . From there you would either keeping going too low, stay only a little low, or shortly swing back hyper, becasue hypo cause antibody increase..same as being too hyper dose.

This is where patients are typically told the meds didn't work.. you must have RAI or surgery. Trouble is.. the meds did work, te patient was a good patient, she took the pills on time, got labs on tie etc. The true problem is a doctor not understanding Graves'.

Think this doctor will adequately prescribe replacement hormone if you need it ? She seems to think she is doing a great job so far.. and the truth is she has forced you hypo from about the second or third week you were given medication. I think she told you several things were not thyroid symptoms already too. Right ?


We can all cross our fingers and pray the 1.25 a day doesn't push you too low. And that could happen. But.. if I were you, I would be studying BRT. ( block and replace therapy) . It is a good strategy for a situation like this. It gets the replacement hormone pills in your hand. Once a scrip is started , it's much harder to take it away.

Now here's where that gets tricky. The original BRT was done on high doses. If I remember right..and I knew several back then doing it.. the PTU was about 450 or 600 mg.... so MMI of 45 mg. or 60 mg. This completely blocked the gland. Then they added full replacement which was about 250 mg of Synthroid or such. I declined this option back then, since it required such a high dose of the drug. That was shortly after the first study was widely published.
I remembered feeling so full of myself when researchers failed to duplicate the results. Now I know the studies were not equal in other ways.. but I was new at all this.

So.. now the problem is if your doctor knows the term BRT, he/she probably thinks of that time. So do NOT use the phrase BRT !

Instead many find suggesting adding a small amount of replacement hormone to the existing MMI dose, to continue lowering the TRab, but preventing your thyroid levels from doping to low, can be successful. One tactic here is suggesting a dose smaller than 5 mg may be ineffective to lower antibodies.

See.. studies use 5 mg MMI as the lowest dose because that's what the manufactures make. (head desk) sigh...

Cindee,
Given the track your on, I'm so happy you are one that has been paying attention, and they are going to have a darn hard time taking your gland away from you. You have a lot of years of service left in that precious gland.

Long ago we played with tee shirt slogans .. the best one fit here...

It's the Antibodies Stupid.

Meaning it's our immune system we heal, as our thyroid gland is perfectly healthy, it's just responding to what it's being told to do..by the antibodies.

Oh, forgot I saw this:

***which at my age could be Graves/thyroid meds or menopause - pick one I guess. ***

Hey.. I did both at the same time too. Sometimes I was pretty sure what was what...but when my levels were off it's really hard to guess. It was only after I got to closer to normal levels for me.. that the differences between thyroid and peri-menopause were clear. Crystal clear in fact. But I sure understand.

Looking back.. I can say, for me, menopause was a walk in the park compared to thyroid. It's all relative .

Thanks Pam. It so scary to be at the mercy of drs - we're suppose to trust them but really how can we? If I hadn't found you guys and Elaine Moore, I'd have been sunk before I got started. I've often wondered what my levels really were when we started the meds. I've been told so many things my medical folks, I just don't know where to
trust, if at all. As far as the Trab tests done as the lab didn't know what that was, neither did my GP when I started and this dr and the first endo i saw didn't ask for it either.

Pam, which of the FT's should I be looking at raising? Both?
I know I'm hypo but can't get the endo to even entertain that thought -
says everything is normal so the hot flashes can't be from the thyroid??? Well, that doesn't jive with what I've been reading. I will see what the next labs in 3 weeks say and ask about BRT - Do you
think the 2.5 will hold me or keep dropping?? If levels are lower
how do I approach the BRT question? I have no intentions of giving up a perfectly good gland. I am taking supplements as well -
Selenium, Vit C, Vit D3, Vit E, Cal/Mag, B Complex and CoQ10.

I sooooooo appreciate your help - all of you. I just want to be prepared for the "next steps" and what I should be looking for and doing - proactive has worked so far.... especialloy with diet and exercise - Endo wanted me to stop any strenuous exercise - well, guess that depends upon your definition....HA She agreed to walk, hike/backpack, cycling, swimming - just no running.....so read between the lines - on what I actually do - now I am "cleared" to run again.....lol if she only knew.... HA But again, I truly believe that because of the level of activity I was used to doing as well as the intensity - to go sit on the couch would have been extrememly detrimental to me - not only physcally but mentally.

So, forgive me if I've already asked this - exactly how do I get the levels up to more "normal" without BRT or can I? I'm scared she will
actually suggest coming off the meds if the labs are lower in 3 weeks.

Ugh!!! Yet, keep smiling!!! :))
Have a great evening!
Cindee

I think the 2.5 might work if your levels weren't too too bad at the 5. Every other day, I don't know....I did the every other day thing at one point with the first endo and I felt very weird but he had me on 5 every other day,so that's different I guess. You can try the 1.25 every day like the girls suggested and stay on that for 6 weeks (that's what Elaine Moore says) and see where your levels are then. No, not get off it at this point,not long enough, it's only been about 5 months, right? If levels are still too low for you, then yes, the BRT would be good as Pam says. Don't worry about cutting the 5 to 2.5 to 1.25. I did that for almost a year.

Hey there, hi !

What a lucky day you had. I saw you and Elaine had the chance to work though this next step. I was even happier to see Elaine agreed with me. LOL ;)

I wonder if it is clear that there are no natural supplements or magic potions that replace thyroid hormone ? The only way for a hypo patient to be able to take thyroid hormone is to have a doctors prescription.
Well.. a few desperate people do order from Thailand, but not only is that illegal, and customs will confiscate it, and they're out the money... there is no way to know know what is in the drugs. Personally I would be afraid of impurities that would only cause more problems in the long run. Why would a businessman in the business of selling drugs illegally have high standards for his customers vs. profits ?

The fact that thyroid patients can become that desperate for the medication they need to live, says a lot about the problem all thyroid patients have. We Graves' patients on ATDs are quite spoiled. If worst comes to worst.. we can ..after getting new labs, self adjust our dose, once we clearly understand our antibodies, the meaning of our lab results , and what needs to change to hit our own personal optimal thyroid levels. This gives us time to find a new doctor that does understand our unique Graves' antibodies. We can do this, once we are experienced, but once a person needs replacement hormone, it's a whole different story.

Most of us on ATDs, once we have experience and a decent doctor are encouraged to be part of all dose decisions, and eventually the doctor learns to trust our dose choices. but till then, we need them to guide us . Thyroid treatment is so personal, it's as much an art as a science. It took me much too long to realize this, and I allowed my pretty good doctor to ever so slightly over dose me..for a very long time.A very long miserable time. If I had only had a computer, found Elaine and the wonderful experienced Graves' patients sooner...

Once I did find all this.. I knew why I felt like I did, I had lab copies.. and starting then, all dose decisions were mine and mine alone. my doctor was not only fine with this, he was pleased I was no longer whining and complaining about all my ailments. Appointments started to become memorable, with each problem clearing up, and so many changes being visibly noticeable. I just called to make the appt. with the lab, got my blood drawn, the results were mailed to me, and at the next appt with my endo, he would ask what dose I was currently taking, and made a note on my chart. This whole long story is to say.. ATDs have a giant advantage over replacement hormone.

Getting a prescription for replacement is often difficult or impossible..depending on each persons individual diagnosis and needs. All Graves' patients face the additional challenge of our TSH receptor antibodies skewing the TSH. Surgery or RAI only removes the thyroid gland.. not the immune system. Those antibodies will always need to be taken into consideration. And antibodies can change, so this is a lifetime issue, no matter what treatment is chosen. My long term remission dose not let me off the hook either. I still only trust the FT4. I know exactly where that belongs. If it were to shift, then I would look at other labs and find the reason.

Doctors tell all of us " That's not a thyroid symptom". sends us out the door o be someone else's problem. As long as that TSH is in range.. they can't be sued and loose, becasue a TSH will work for lots of thyroid patients ( Hashi's patients do make TSH..and some of them do have it work well..just not all of them ). . It doesn't fix our problems, but they have more patients in the waiting room. An endless supply.

So... my suggestion to try BRT as a STRATEGY, is two fold. It's a perfect solution to your low TSI and rapid decent.. giving you the ability to properly treat your Graves'. It also gives you a foot in the door, if you slide too low all on your own.

Now it may well turn out that 2.5 mg fits perfect and your FTs come up nicely. Or maybe the 1.25 mg.. but your concern that you may be cut off while still having higher antibodies i also justified. It's always better to have a plan, even if it turns out we need to change the plan. This stopping meds prematurely is one big reason remission statistics in this country are not as good as they could be.

IF.. nothing seems to work out like you want in the time frame you fall into..all is not lost. What could happen is you might swing hyper again at some point. Then you will hear " RAI now since drugs don't work for you. " :( Lots of people fall for that. Thing is, your ahead of the game. Your not going to get confused if that were to happen.

If meds worked before.. they always work again. We knew a gal for years. She took MMI for a year or so the first tie. She started long before we had antibody tests or the current FTs. She stopped when her ATD sent her hypo. She relapsed a few times..starting meds each time.

Linda or Brans,
Do you remember how much time Annie took meds ? It was a total of 3 1/2 years or so ?

But Cindee, the thing is, this was over thirty plus years. That's a whole lot of years with a normally functioning thyroid ! She agreed with all the others I've known that relapsed among my old friends. they say the relapse is easy to notice, catch it early and start on a low dose of meds. Each relapses is shorter and shorter.

Yes..once in awhile we see a new member of one of our groups say they have relapsed and it came back with a vengeance. the difference is you already understand Graves' and have taken the time to work though all this. You would not be in the second group. I know know thing.. if that happened I doubt you would fall for the 20 mg, or the too slow reductions again. ;)

Pam,
Thank you so much - Linda you as well and everyone that contributes here. I feel very blessed to have your experience and expertise and yes, Elaine Moore has been amazing.

I will hold on to the BRT therapy as a place to go given what the next labs show - and not sure current Endo will go there as we've said before - she thinks all is swell. However, I am going to make her a time line because when the TSH started to change given the 6 week lag was about 2-3 weeks on the MMI and I started having symptoms....I will say though that on the 2.5 per day, the numbness is much less and I have been able to sleep with just a periodic wake up to change position. I actually woke to the alarm this morning and I can't remember the last time that happened.

Feeling better this morning and now working on some food triggers to see if there is a difference - I have a feeling strawberries which I love may be a culprit so will check that out more. Hate to give up some of the healthy goiterogenic (sorry if I missed spelled) foods that have helped me lose weight and keep it off but overall feeling of health is best and may be a way for me to increase the levels on my own a bit and may be able to eat them once in a while instead of as freguently as I do - beauty of them is - they are full of fiber and lower calorie....ahhh, another Catch 22...lol

I do believe I too, will be able to know what fits me best. My first conversation with Endo was how are you medicating to the labs or how I feel - she said "both" - I said, we'll go with how I feel....so that's the direction I'm sticking with and I need to be up in the mid range of 1.3 on the FT4's at least - although Pam, didn't you say the FT3's are how we "feel"??? If that's the case then I'll need to find the mid range for those.

Thanks you so much again and I hope someday I can pass on what I'm learning.....
You are all a blessing - have a fabulous day!!
Cindee

Pam:

3 1/2 years for Annie sounds right.

{{{hugs}}}

Linda,

Thank you ! At this point I have so many stories of fellow Graves' patients in my head, I fear they may start jumbling together if I'm not careful.
I remember when we first met Annie and she explained her carefree method...if I go hypo I just quit. Gosh, we had been hard at work learning all we could about the newest research and absolutely everything we could, to be "successful". And there she told us we were worry-worts. Well, she never came out and said it, but I'm sure we just have thought it.

Over the years she became one of my best discoveries . She had given me the reassurance that no matter how things went this month.. I could work it all out and do well in the long run.

Same thing for the others I've known well, that have had a relapse or to. They do so amazingly well . They nip it in the bud, and their time on ATDs goes so smoothly for them. It seems once we learn our lessons, get a system set for lab results to come to the front door in a timely manner, and know our own body..its' all so simple. Not that the learning process is simple or easy ..but I think it's like riding a bike. Once you find your balance, you never forget.

Maybe one reason I don't relapse is I couldn't care less. No stress. LOL. My fear is sliding hypo. And one day I will. I can only pray I will find a doctor that is willing to let me live at my optimal levels. That was impossible the first time around, and a battle to get as close as I managed. Why do they think "It's not thyroid", if your within the reference range ?

Cindee,

What's wrong with this picture= Not eating healthy foods in order to be healthy ?
I totally understand. They ( group members and Elaine) when I was sliding too low. It didn't work for me, but you have to try. It's the only way to know.

Your FT3 is working well. It's responding correctly to your available FT4, so it will probably continue doing so. It's mostly those without a gland or a damaged gland that have T3 problems, so yours is not a problem at this point. You need enough T4 in order for the body to convert it into T3. Supply and demand. LOL