[Naisly]

in reply to: * Undestanding Thyroid Stimulating Immunoglobulins (TSIs) & GD * #1175555

vanillasky
I hope you will have a better day tomorrow. But try not to take what Bobbi said to heart, it’s my fault anyways, I believe she was making a ‘jab’ at me, not you.

~Naisly

[Naisly]

in reply to: * Undestanding Thyroid Stimulating Immunoglobulins (TSIs) & GD * #1175548

This is a good article, thank you for sharing.

I will mention this as well, as I’m sure some of you don’t want to hear it, but here goes.

TSI doesn’t go away just because you destroy your thyroid with RAI, actually it makes it worse, because the TSI sees RAI as a threat and will bind to other tissues giving us other autoimmune disease as the article states – thyroid eye disease and pretibial myxedema. Where as the lesser of the two evils surgery will remove a lot of the TSI since most of the TSI stays in your thyroid. But surgery won’t remove all of it. And this is why some people will get TED even years later, much like Shirley here on the forums.

~Naisly

[Naisly]

in reply to: Few things to help you feel better. #1175499

mvk
I glad it helped. This is what they consider an invisible disease. I almost get the feeling that not only the people around us, but we graves patients have a hard time with this as well. Really believing how sick we are.

Carito71
Thank you for adding your thoughts as well. You are so right in saying we need to heal our immune system and regardless of treatment, it still takes time.

I have been blessed with no allergies, I just couldn’t imagine what it would be like to have GD and allergies.

~Naisly

[Naisly]

in reply to: FT4 and FT3 question #1175530

Hi there,

I did forget the mention that beta-blockers lower the conversion of FT3. So, if you have stopped taking them that can show a rise as well.

In any case, here is an article that might help with your question. As I said,

Quote:

Things like other hormones, like estrogen, and illness, some drugs effect these results.

Effects of the Environment, Chemicals and Drugs on Thyroid Function

It is technical, but helpful to show what effects our thyroid hormones.

Edit: My labs were all over the place (and still are) so I asked my internist about it, and he said basicaly what I told you. And like you I wanted to know ‘why’ so I started to research it this is why I knew the answer

Nov 19 2012 5mg Methimazole
TSH 18.9 (0.38-5.5)
T4 Free <5.0 (10.5-20.0)
T3 Free 4.3 (3.5-6.5)

Oct 25 2012 10mg Methimazole
TSH 73.8 (0.38-5.5)
T4 Free <5.0 (10.5-20.0)
T3 Free <1.69 (3.5-6.5)

October 3rd 2012 15mg Methimazole
TSH 0.09 (0.38-5.5)
T4 Free 7.6 (10.5-20.0)
T3 Free 2.4 (3.5-6.5)

Sept.12 2012 Started 30mg Methimazole
TSH 0.06 (0.38-5.5)
T4 Free 58.2 (10.5-20.0)
T3 Free 21.7 (3.5-6.5)

Hope this help,

~Naisly

[Naisly]

in reply to: FT4 and FT3 question #1175528

catstuart7

Quote:

Also could be the time of day your getting your labs done. In anycase your body makes the FT3 on as need be basis.

In other words, FT3 fluctuates through out the day. So if you got your labs done at 8am, then 2pm the next time, your FT3’s might be higher or lower, depending on what your body wants. Its not an issue, We as GD patients need to work on the FT4’s and the FT3’s will fall into place once we find our ‘set point’

vanillasky
If your getting so hot, remember to try and stay hydrated. Heat intolerance and hot flashes are symptoms of hyper, could be that? Another thing to consider is exercising with an elevated heart-rate of even 90-100 can prove to be dangerous. The heart is a muscle and GD affects muscles.

Try not to exercise to the point that you become overheated. Our metabolism is so high, it is difficult to cool ourselves off sometimes. Excess sweating can lead to loss of minerals, electrolyte imbalances and dehydration. As graves patients we can’t afford to lose these at the moment.

Just don’t push yourself, take it up slowly and watch you limitations when exercising. Talk to your dr and ask him what he thinks about how much exercise your body can handle.

~Naisly

[Naisly]

in reply to: Few things to help you feel better. #1175497

Hi Bobbi,

Quote:

Ok, so this is my take on it all. I have read remission can occur any where from 18% – 80% in patients and I have an idea why that is. I don’t think many patients have been given the proper knowledge about the disease and assume they take a pill every day, get to euthyroid (mistakenly thinking this is remission) then stop taking the medication assuming they are in remission, yet found themselves bounced right back to hyper. Nor do most people take into account the environmental triggers and continue to eat the same, smoke the same, keep the same stress levels and expect that little pill to do it’s magic all on it’s own.

That wasn’t my point. My point was not many people understand the process and assume because they hit the 12-18 month mark that they are in remission. You would need little to no TSI to be in remission, and if this wasn’t possible, then it would be ok to stay on ATD’s for a life time.

Btw Bobbi, a smile goes a long way

~Naisly

[Naisly]

in reply to: FT4 and FT3 question #1175525

Bobbi wrote:

The “elegant” solution to our Graves disease will be when doctors can isolate the “bad” antibody, and shut it off. (Or, rewire the furnace, if you want to use my analogy. ) We do not have that solution yet, and it may be decades away. In the meantime, however, you might consider the old Rolling Stones song. “You can’t always get what you want…..but if you try sometimes, you must might find, you get what you need.” We have three treatment options that work to give us back our health. We have what we NEED at this point in time. We are lucky that way. There are a lot of my friends, with other types of autoimmune diseases who have no such effective treatment options available to them.

This is true about isolating the bad antibody. And your right we do have what we need with our 3 treatment options, but isn’t it best to educate people correctly so they can make the best decision for themselves? after all isn’t the the moto of this foundation – Educate * Encourage * Empower?

~Naisly

[Naisly]

in reply to: FT4 and FT3 question #1175524

Haha, well the furnace was just a crude example, the only thing I could think of at the moment ( I guess it’s on my mind since me and my partner seem to argue about turning down the furnace daily lol)

The article Caro posted is great, its short and to the point – read that.

Once you have read that, think about it this way. If I use my crude furnace analogy we could say that Caro’s article is the ‘chipmuncks’ (TSI) mucking around with the wiring between the thermostat and furnace.

So the thermostat (TSH) sends pulses through out the day to the furnace (T4, T3 hormones) through these wires that the chipmunks (TSI) are chewing on. In healthy people only the thermostat can control these pulses, then when the chipmunks get in thats when we need an exterminator (cure) because after a while the chipmunks take full control (and stops TSH completely). And depending on how many chipmunks, depends on how much your furnace will turn on. ATD’s are much like an electrician, they come in and try to bind the wires so these nasty little chipmunks can’t chew as much and get in.

The thermostat is our Graves disease. So, yes it is broken and will remain broken since at this time there is no cure. But – This is why reducing the amount of TSI in our system is very important and as close to a cure as we can get and this is what ATD’s do (matter of speaking, which I’ll explain later). Where as removing the thyroid (Furnace) somewhat helps the symptoms but doesn’t address the cause (chipmunks and faulty wiring).

Hope this helps, (lol I think Iv’e confused myself)

~Naisly

[Naisly]

in reply to: FT4 and FT3 question #1175514

How the free T’s work is actually very interesting so I’ll try to explain it without confusing us even more.

It wasn’t long ago that dr’s didn’t even look at the FT3’s and before that, most didn’t even agree they existed. In retrospect, we have come a long way with understanding Graves/Hashimoto’s since then.

T3 and T4 are hormones which have iodine atoms in each hormone molecule. T4 has 4 iodine atoms, and T3 has 3 iodine atoms.

T4 doesn’t really do much, it sort of floats around circulating repository of thyroid hormone. When our body needs do metabolic work, emzines will knock off 1 atom from the T4 making it into T3 <--- cool eh? We have something called hypothalamus pituitary thyroid axis and this raises and lowers for our bodies needs through out the day. This process keeps our bodies at our own ‘Set Point’ which is genetically determined. And because of this axis it can take 6-8weeks for our TSH to respond.

So basically, much like how a furnace would work –

• Hypothalamus TRH (this is a timer turning up/down the thermostat)
• Pituitary TSH (this is the thermostat)
• Thyroid T4 & T3(this is the furnace)

By looking at this you can imagine the outcome – when your getting too hot you turn down the furnace, and when your too cold you turn up the furnace matter of speaking. (sorry for the bad analogy for those who are suffering with hot flashes lol)

In Graves disease, this axis is broken – basically the thermostat is broken.
(And on this note, I personally wouldn’t replace my whole furnace just because my thermostat was broken)

Now onto the the more interesting part TFree’s. T4 and T3 are bound to carrier proteins and less than 1% of the hormone not bound to protein is free. This means it is available to do metabolic work. The FT4 and FT3 tests show us what is available to do metabolic work. Things like other hormones, like estrogen, and illness, some drugs effect these results. Keep in mind that the T3’s are much more potent than T4’s. Total T4&T3 hormone tests can be misleading this is why you and your dr need to see the Free’s.

I suppose to answer the question – Why they fluctuate so much, is not really an easy answer. I guess to sum it up it would be because of changes your making, perhaps your estrogen levels. Also could be the time of day your getting your labs done. In anycase your body makes the FT3 on as need be basis (matter of speaking without getting technical). This is another reason to have your labs drawn the same time each day.

Conversion is sort of another topic, but I will say this. This is usually do to removal or ablated thyroid. For people who are on a synthetic hormone replacement like, Levoxyl, Levothroid and Synthroid. Some of these people have a hard time converting (emzine knocking off the atom). A healthy thyroid will produce about 90% T4 and 10% T3 every day. And most people do well with 6-7mcg of T3, but if you don’t have a thyroid, this can cause problems if you can’t convert it well. So, if someone had their thyroid removed or ablated, and still have hypo symptoms, your FT3 is probably low and this is where you can ask your dr about Cytomel.

But caution is advised, because other things can cause low FT3 – Like deficiencies of selenium and zinc, low carb diets, low protein diets, low calorie diets, illness, surgery, etc. Rule those out first before thinking you have a conversion issue.

Well I sure hope I didn’t confuse anyone, I did try to make it sound easier than it is lol.

Hope this helps,

~Naisly

[Naisly]

in reply to: Few things to help you feel better. #1175494

Oops I forgot chocolate is a stimulant as well. Don’t worry too much, all you can do is try. And sometimes sneaking in a bar every once in a while isn’t going to hurt, because after all, it does help alleviate stress, just don’t become reliant on it too much.

Aspartame complaints accounts for about 70% of complaints to the FDA. Just something to keep in mind.

Sleep is very important part in healing of course. But I suppose since we are so hyper and our metabolism is going a hundred miles per hour this can be quite difficult. Our minds are probably over loading on everything we did/have to do as well.

Maybe try to de-stress yourself before bed? Like low lights, no TV/computer, reading helps a lot of people relax before bed.

I remember long ago a doctor once told me to have a note pad next to my bed and write out a list of things I want to do the next day. Apparently this helps to remove it from our mind. I don’t know about you, but I pretty much lay there forever going over and over the things I should have done that day, and need to remember to do the next day.

My mom swears by a ‘salt lamp’? I have never used one personally.

Also, not long ago there was a big stink on the news about too much radio waves?(too many wires next to our bed) in our bedroom, which disturb our sleep patterns. I really didn’t pay attention to it. But I know there were parents on the news screaming about too much in schools as well. Who know, might be worth a shot.

~Naisly

[Naisly]

in reply to: Saw Endo this morning–off Methimazole! #1175231

When I had my ultrasound back in Sept. the technician said they look for size of the thyroid and if any nodules are present. And when I asked my internist why I had to do an uptake scan back in June. he said because it measures how much iodine your thyroid takes up, this is so they know how much to give you for RAI.

In anycase, I ran into an interesting article “Adult Hypothyroidism” and in it, it does suggest anyone suspected to have Hashimoto’s to have the uptake. I will make a new post as I think this will interest everyone with questions.

~Naisly

[Naisly]

in reply to: Saw Endo this morning–off Methimazole! #1175228

Beta-blockers are not just for heart rate, but for the nervous system as well, brain function etc. Also used to lower the conversion of FT3. And your endo said you were responding quite quickly to the ATD’s, so in retrospect a lot can happen in 3weeks. Like here’s an example:

My Labs (please take note of the dates)
Nov 19 2012 5mg Methimazole
TSH 18.9 (0.38-5.5)
T4 Free <5.0 (10.5-20.0)
T3 Free 4.3 (3.5-6.5)

Oct 25 2012 10mg Methimazole
TSH 73.8 (0.38-5.5)
T4 Free <5.0 (10.5-20.0)
T3 Free <1.69 (3.5-6.5)

October 3rd 2012 15mg Methimazole
TSH 0.09 (0.38-5.5)
T4 Free 7.6 (10.5-20.0)
T3 Free 2.4 (3.5-6.5)

Sept.12 2012 Started 30mg Methimazole
TSH 0.06 (0.38-5.5)
T4 Free 58.2 (10.5-20.0)
T3 Free 21.7 (3.5-6.5)

Do you see how fast I responded? So yes I am a bit concerned for you. I was very very sick but I at least had beta-blockers to stop a thyroid storm (to a degree)

Thyroid peroxidase (TPO) auto-antibodies attack and destroy an enzyme needed to make T4 and T3. Thyroglobulin auto-antibodies (TgAb) attacks a protein that exists in the thyroid tissue and that is needed to make thyroid hormone. These auto-antibodies are destructive and cause cell death.

So, since a lot of people with Graves already have TPO then to make sure it is Hashimoto’s it is suggested to have the TgAb test done as well.

Also, I can’t remember but what was your FT3 labs?

~Naisly

[Naisly]

in reply to: weird throat sensation #1175343

catstuart7 wrote:

Thanks Naisly! When I feel my neck or look in the mirror I don’t see a difference but then I am a little, ahem, plump and that might mask things. Could you feel the goiter with your fingers or see it or was it just a sensation of internal pressure? It’s good to know it should get better once thyroid levels are in the right place. Oh and speech, yes, I am very hoarse and feel like I have to force my voice out – thought it was cause I had been coughing but it is odd.

ETA: so was it your thyroid levels being too high or too low that causes the pressure for you?

At first my voice changed – Hoarse or I had to cough sort or sound.

Then pressure – Almost as if (hard to explain) I had a tight collar on. And a slight pressure when I swallowed, as if I might choke on my food, I never did of course, but it only felt like that.

Then I felt a lump, but when I asked people around me they said they didn’t see anything.

Then my levels went wacky (hyper) and the above seemed worse, Thats when the lump was more noticable.

Now, even when my levels went way down (hypo) I felt the same as above.

~Naisly

[Naisly]

in reply to: Saw Endo this morning–off Methimazole! #1175226

Hi amosmcd,

I find it so odd that an endo is expecting you to go hyper, that dr is taking a huge risk on YOUR account. Your levels could change rapidly and you could run the risk of developing a heart condition, or bone and muscle issues, or worse – a thyroid storm. I realize your not experiencing many symptoms (yet your body is still ill at the moment) but that could change if your left hyper/hypo too long. I’m very surprised the dr didn’t prescribe at the very least beta-blockers. I took beta-blockers for 4 months BEFORE I started on ATD. It did help me and probably saved me from going into a thyroid storm because my levels got way out of hand. I too was like you, I was very tired after I started taking the ATD, but that soon subsided after a couple of weeks. The drs “think” I have Hash’s as well, my levels are 2670 (<35) and even though my levels are way higher than yours, my dr's believe it is still possible for me to go into remission with ATD's, no stress, proper diet etc. So there is hope.

I do suggest you get a TgAb lab test when you get your other labs. I’m going to ask for this as well when I see my endo. This test will help confirm if it’s Hash’s.

You also don’t need a I-131 uptake — this is only for if you decide to do RAI. And if your dr has any concerns of noduals, then an ultrasound will do for that. They used to believe that people needed the I-131 uptake to dx Graves, they realized you only need TSI labs for Graves dx.

And as Bobbi said:

Quote:

Being tired goes hand in hand with both hyperthyroidism and the hypothyroid state. But the dose that you need of the methmimazole has to be calibrated to your needs specifically, so it is possible for it to make you hypo. I could feel a difference in the type of fatigue I had while hyper or hypo. If I exercised a bit while hypo, it energized me. (I’m talking a quiet walk, or something simple, not kick boxing or spinning.) If I tried even a quiet walk while hyper, it only made me more tired. Also, if the medication is slowing your body down, as it is supposed to, you could be feeling just how tired hyper was making you. Without the added “jazz” of thyroid hormone, we do feel fatigue until we readjust to “normal” again.

Oh, on a note, many people with Graves were first hypo – and sometimes this could go on for a couple years before the Graves dx.

Hope this helps,

~Naisly

[Naisly]

in reply to: antibody.for.graves.test.came.back.positive. :( #1175356

TPO antibodies are indicators of thyroid inflammation and does not necessarily mean it is Hashimotos. Most people with Graves also have TPO antibodies some more than others. To see if you have Hash’s you would need to have TgAb labs run.

And yes, TSI shows you have Graves. So by vanillasky’s values, I would have about 1000 TSI antibodies. Mine currently are 10.6 (<1..

~Naisly

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