# I want to get EVICTED from hypo-land



## HotGrandma (Sep 21, 2012)

I want to get EVICTED and move out of this Hypo-Land. Its a horrible non friendly place. This isn't making any sense, and I don't understand nor do I know what to do. Been dosing for Graves since 2/2012
02/11/2012 T3 Free 5.3 (2.3-4.2)
T4. 15.3 (4.1-11.5) went on 5mg Methimazole
3 times per day
05/30/2012 T3 Free 5.5. (2.18-3.98) 
T4. 17.9 (4.7-13.3) Levels went up increased to 10mg
July 2012 I don't have but they were High
10/24/2012 T3 Free 1.5. (2.18-3.98)
T4. 2.3. (4.7-13.3) CRASH lowered Methimazole to 7.5 three times per day
11/28/2012 T3 Free 2.08 (2.18-3.98)
T4 Free 0.41 (0.76-1.46) Up a little lowered dose to 5mg three times per day. 
Labs 12/18/2012 are EXACTLY the same after 20 days while still on 5mg three times per day.

Why didn't these numbers move at all? Could it mean there is hope I can be stabalized with medication? What should I do? Cause I'm getting really flusterated. The labs are the same but my heart rate went from 96 average down to 85 average in the last 20 days. Does your body take weeks to adjust to the numbers. In other words Labs are the same but I feel a tiny bit better.

Thankx. 
P.S. REWARD offered to anyone with help, hope or answers.


----------



## StormFinch (Nov 16, 2012)

It's definitely possible that you've gone into remission in the 10 months you've been on the MMI. The maintenance dose for that particular medication is 5 to 15 mg per day so you're on the high end of that now.

I personally think your numbers didn't move simply because you've been on the same dosage and probably are in at least partial remission, especially if your Graves was caught early. You might still have some antibodies floating around though which could explain why your heart rate has only recently started to calm.

Did you have an ultrasound done and if so, how did your thyroid look?

If it were me with those Frees, I'd talk to my doctor about dropping down to the bare minimum 5 mg once per day of the MMI and have him/her run a TSI test. Anything higher than 2 I believe means that there are still Graves specific antibodies running around in your system, although I think it can take up to three months after your numbers reach normal to get an accurate picture. I think I'd also get a TPOab and TGab run while I was at it, just to make sure I was only dealing with Graves, but then again I have both Graves and Hashi's so that could just be me being suspicious. 

There is one major caveat to remission however, and maybe someone else can chime in on the hypo problem. It's said that remission is typically harder to maintain if you've been taking the medication for less than 18 months. I know you need to get your Frees back in the normal range and am wondering if the minimum 5 mg would help you do that, or if you need a break from it, or what?

*BTW, I'm out tomorrow to see my endo surgeon for post op follow up, so I'll check back in tomorrow evening.


----------



## HotGrandma (Sep 21, 2012)

Stormfinch:

Thank you for the information.

How are you doing (2 weeks) post Op? Look forward to your update after your endo apt tomorrow. Wish u a speedy recoveery.


----------



## StormFinch (Nov 16, 2012)

LOL I said tomorrow, should have been later today. I forgot I was typing that at 2 in the morning. 

I'm actually doing great! Told my doc he's a genius, that I'd gotten my voice back by day 4 and most of the feeling had come back into the skin of my neck, easiest surgery I've had yet. He jokingly asked if I'd come back and tell that to all of his other Graves patients. lol

I've got the steri strips off, though I haven't looked at the scar yet. Just got home and plopped down on the couch since it's a 2 1/2 hour drive to and from his office. He drained a little fluid off the site with a syringe but otherwise seemed to be happy with my progress.

He didn't run labs today since I goobered up my medication. I could have SWORE that the levo bottle instructions said 1 tab twice per day... it didn't, which I figured out about 5 days later. It said 1 tab once per day which would have been 75 mcgs daily, and I've done for about 4 days. I've felt so good between the two though that I talked him into 125 mcgs per day and we'll do labs in a month. Huzzah!


----------



## HotGrandma (Sep 21, 2012)

Dr appt. today. Doc was as baffled as I was that I went from 7.5 mg of Methimozole to 5 mg three times per day and got the exact same labs to the .00 (hundredth) on both F3 & F4 Frees after 20 days.

I asked about adding TRAb and TPOab to the next labs (TGab was all normal in 5/12) he said, he recognizes there are antibodies running around and at this point it would only be a waste of money to verify they're there.

He lowered the dose to 2.5mg of Methimozole three times per day and to call if I felt worse, have new labs in 2-3 weeks and come back. Said, I responded unusually and Graves was tricky, so its a wait and see thing. Recommended taking additional Magnesimum Citrate for the pain.

I'm tired and really wish I could find a rock to crawl under. Got denied for insurance, so everything's still out of pocket. So I'm not sure if Graves is all I'm dealing with.

I would so appreciate any input on my labs, cause I'm so confused and scared.


----------



## Andros (Aug 26, 2009)

HotGrandma said:


> I want to get EVICTED and move out of this Hypo-Land. Its a horrible non friendly place. This isn't making any sense, and I don't understand nor do I know what to do. Been dosing for Graves since 2/2012
> 02/11/2012 T3 Free 5.3 (2.3-4.2)
> T4. 15.3 (4.1-11.5) went on 5mg Methimazole
> 3 times per day
> ...


You sure are hypo, there is no question of it. There is a lag time between the numbers and the way you might feel but sooner or later, the body will "feel" the numbers. There is no other way to describe this.

What is the game plan here? Will you stay on antithyroid or do you plan on removal of the thyroid?

The two labs are awfully close together. If I recall; I had labs every 6 weeks when I was on Tapazole "unless" there was a problem, of course.


----------



## HotGrandma (Sep 21, 2012)

Andros said:


> You sure are hypo, there is no question of it. There is a lag time between the numbers and the way you might feel but sooner or later, the body will "feel" the numbers. There is no other way to describe this.
> 
> What is the game plan here? Will you stay on antithyroid or do you plan on removal of the thyroid?
> 
> The two labs are awfully close together. If I recall; I had labs every 6 weeks when I was on Tapazole "unless" there was a problem, of course.


Thank you Andros

The plan was to have the thyroid removed but I keep getting denied for insurance. Seems there's no negotiating with the hospitals or surgical centers as far as sliding scales or rates unless it were a life or death circumstance.

Doc doesn't want to chance me going hyper again. Wants to "go slow keep it low" until my body can tell where the numbers are. You are absolutely right seems it takes at least 4 weeks for me to feel where my labs were. That's the exact reason he wants to keep it slow.

My history in 2007 I was hypo would take 50 of Armour for 4 months then 8 months later do it again. How I felt and my labs matched. 2010 we didn't do labs the Armour made things worse. So I'm thinking I went hyper then. So I don't understand how you go from a few years being hypo to Graves and hyper. Any thoughts?

There was a decrease in swelling of the thyroid gland itself within the last two weeks so Doc said it was safe to see my chriopractor I did and he said I had a compressed nerve in my shoulder and neck. Was told to keep heat on it and stay immobile the rest of the day.

Thank you again for taking the time to explain things to me.


----------



## Andros (Aug 26, 2009)

HotGrandma said:


> Thank you Andros
> 
> The plan was to have the thyroid removed but I keep getting denied for insurance. Seems there's no negotiating with the hospitals or surgical centers as far as sliding scales or rates unless it were a life or death circumstance.
> 
> ...


You are most welcome!! The good Lord gave me the time so I try to use it well!! LOL!

Blame the flip flop on stimulating, binding and blocking antibodies to the receptor sites. They are fast at work and have been for a very long time.


----------



## HotGrandma (Sep 21, 2012)

Andros said:


> You are most welcome!! The good Lord gave me the time so I try to use it well!! LOL!
> 
> Blame the flip flop on stimulating, binding and blocking antibodies to the receptor sites. They are fast at work and have been for a very long time.


Andros:

What ate the names of the flip flop? Is this the T3 Free and T4 Free? TSI? I keep reading and researching but for some reason the light bulb of understanding had not turned on in my head.

Thank you, sorry to be such a pain.


----------



## Sandbar (Nov 6, 2012)

Hi HotGrandma, my two cents is that you are on way too much medication. 15mg of MMI a day is a dose appropriate to someone who is actually HYPER. You are clearly HYPO and while I get that your doctor doesn't want you to be hyper, from your lab history you are not at risk of suddenly going out of control. Dosage reductions can cause temporary hyper symptoms though so maybe just go down to 10mg for a few weeks, then to 5mg. I'm pretty stable of 5mg myself and slightly hypo. The costs of being hypo are real....to me it's not an acceptable place to leave my levels. My joints will hurt, the depression is awful. So don't compromise!

Here's a little rainbow...hope things look up soon


----------



## HotGrandma (Sep 21, 2012)

Sandbar said:


> Hi HotGrandma, my two cents is that you are on way too much medication. 15mg of MMI a day is a dose appropriate to someone who is actually HYPER. You are clearly HYPO and while I get that your doctor doesn't want you to be hyper, from your lab history you are not at risk of suddenly going out of control. Dosage reductions can cause temporary hyper symptoms though so maybe just go down to 10mg for a few weeks, then to 5mg. I'm pretty stable of 5mg myself and slightly hypo. The costs of being hypo are real....to me it's not an acceptable place to leave my levels. My joints will hurt, the depression is awful. So don't compromise!
> 
> Here's a little rainbow...hope things look up soon


ThanKs Sandbar and Andros:

Doc says Methimozole doesn't stay in the body long and that it needs to be taken 3 times a day. So I am taking 2.5 mg 3 times a day for a total of 7.5mg per day. I asked about dosing everyother day. Doc said that wouldn't work cause the drug doesn't stay in the body long. Is this a fact that Methimozole has to be taken 3 times per day? I've read other posters on this forum state they take only once per day. Wonder if I need to be taken off Methimozole for a few weeks to see what happens. If I wasn't so scared I'd end up back where I was 10 months ago that's exactly what I'd do. What would you do if you were me?


----------



## Andros (Aug 26, 2009)

HotGrandma said:


> ThanKs Sandbar and Andros:
> 
> Doc says Methimozole doesn't stay in the body long and that it needs to be taken 3 times a day. So I am taking 2.5 mg 3 times a day for a total of 7.5mg per day. I asked about dosing everyother day. Doc said that wouldn't work cause the drug doesn't stay in the body long. Is this a fact that Methimozole has to be taken 3 times per day? I've read other posters on this forum state they take only once per day. Wonder if I need to be taken off Methimozole for a few weeks to see what happens. If I wasn't so scared I'd end up back where I was 10 months ago that's exactly what I'd do. What would you do if you were me?


Your doctor is most correct. Methimazole has a very short 1/2 life. And by that I mean hours. Maybe 5 to 6 hours; something like that!

TSI is stimulating, TBII is binding, Trab is blocking...................(I think?) If anybody has a correction to make, please do so!

http://www.hindawi.com/journals/jtr/2012/182176/


----------



## StormFinch (Nov 16, 2012)

From what I've understood Andros, TRab is used to differentiate between Graves disease and other forms of hyperthyroidism, say toxic nodule or thyrotoxicosis. Then there's others like TSab (stimulating) and TSBab (blocking) ... eventually I just get confused. lol


----------



## Andros (Aug 26, 2009)

StormFinch said:


> From what I've understood Andros, TRab is used to differentiate between Graves disease and other forms of hyperthyroidism, say toxic nodule or thyrotoxicosis. Then there's others like TSab (stimulating) and TSBab (blocking) ... eventually I just get confused. lol


It certainly is; especially when it comes to orbital infiltration. Trab is a huge indicator of that.

I dislike acronyms and that compounds the confusion for me! LOL!!


----------



## Sandbar (Nov 6, 2012)

HotGrandma said:


> ThanKs Sandbar and Andros:
> 
> Doc says Methimozole doesn't stay in the body long and that it needs to be taken 3 times a day. So I am taking 2.5 mg 3 times a day for a total of 7.5mg per day. I asked about dosing everyother day. Doc said that wouldn't work cause the drug doesn't stay in the body long. Is this a fact that Methimozole has to be taken 3 times per day? I've read other posters on this forum state they take only once per day. Wonder if I need to be taken off Methimozole for a few weeks to see what happens. If I wasn't so scared I'd end up back where I was 10 months ago that's exactly what I'd do. What would you do if you were me?


Every person's situation is different, but if it were me no way would I stop it. Rebounding hyper is still possible. You've got a lot of room to still reduce it - 5mg a day (split into two 2.5 mg doses), some people only take 2.5mg a day divided in half. From what I've read and experienced, consistent daily doses 2 or 3 x's a day are best.


----------



## HotGrandma (Sep 21, 2012)

Thank you so much

Stormfinch, Andros and Sandbar. And you are right there is a gread deal of physical pain when hypo its exhausting in itself.


----------



## HotGrandma (Sep 21, 2012)

Okay, so I got EVICTED but just barely.
01/15/2013 T3 Free 2.59 (2.18-3.98)
T4 Free 0.90 (0.76-1.46)
Doc is leaving the Methimazole at 2.5mg 3x per day and to check back with him in 2 weeks. Then he's going to go with how I feel and skip a few labs.

Wants me to see an Endo which I cannot afford. Wants this thyroid removed. Hospital's have quoted me $41,000 to $47,000 with no sliding scale based on my ability to pay. I cannot qualify for insurance with a diagnoses of "Graves". Got the big O DENIED.

No RAI cause of GED.

Waiting on consultaion from opthomologist when she returns from maternity leave. To see if I can have surgeries yet or afford surgeries so I have some quality of life back. With this strabism I cannot Knit, spin, weave, sew or do my photography, so I have no fun anymore.

Okay I have to stop whyining cause its making me cry, this just sucks and there's no one I can talk to about it except here. Thankx


----------



## Andros (Aug 26, 2009)

HotGrandma said:


> Okay, so I got EVICTED but just barely.
> 01/15/2013 T3 Free 2.59 (2.18-3.98)
> T4 Free 0.90 (0.76-1.46)
> Doc is leaving the Methimazole at 2.5mg 3x per day and to check back with him in 2 weeks. Then he's going to go with how I feel and skip a few labs.
> ...


Oh, my dear Lord!!! What are we all going to do here? What kind of insurance premiums are folks paying that would even cover that?

There is no guarantee the surgery won't make the eyes worse either.

You can take prednisone during your RAI to keep the eyes from reacting.

If you have radiation and surgery, you will need to take replacement thyroid hormones for the rest of your life, because these treatments destroy or remove the gland.

Some of the eye problems related to Graves' disease usually improve when hyperthyroidism is treated with medications, radiation, or surgery. Radioactive iodine can sometimes make eye problems worse. Eye problems are worse in people who smoke, even after the hyperthyroidism is cured.

Sometimes prednisone (a steroid medication that suppresses the immune system) is needed to reduce eye irritation and swelling.

Please note the use of the word "sometimes!"
https://eaware.org/thyroid-gland/#graves'

I feel your tears and angst.


----------



## HotGrandma (Sep 21, 2012)

Andros said:


> Oh, my dear Lord!!! What are we all going to do here? What kind of insurance premiums are folks paying that would even cover that?
> 
> There is no guarantee the surgery won't make the eyes worse either.
> 
> ...


Andros:

I've been on prednisone since July and Doc doesn't want to take any chances of my eye's swelling again so he refuses to take me off. That's why he wants me to see an Endo that has more experience with "Graves". Endo's told me an office visit is $250.00 and they will not treat me without an ultrasound of $2,000 to $2,500.

If the tyyroid was out I only have one place to go with labs and its up. Where I'm at now, I'm a YO-YO up and down up and down, and my symptoms cross over, I cannot tell if I am high or low only that something is bad wrong when I have the heart palps. This is the first time in over 12 months that I've come close to being in range. Right now I pay $300 to $1,000. per month between labs, doctor visits, medications and vitamins.

Insurance told me that when Obama care is in effect they have to qualify me, but my premimums will be about $1,000 per month with a high deductible and co-pay. Its upsetting that there is no light at the end of the tunnel, and no way I can possibly win. Maybe I just need antidepressants so I can cope.


----------

