[Naisly]

in reply to: What Acronyms Do Our “Newbies” Need to Know? #1177452

MMI
TED
PTU
FT3
FT4
RAIU

[Naisly]

in reply to: New lab results #1177261

I think you might have accidently typed in your FT3 and FT4 backwards.

Your doing fantastic with your labs, they are looking great. Your FT3 is lagging behind a tad but that is to be expected and should rise as you level off. Your TSH isn’t suppressed and that’s wonderful, your very lucky!

I did look up your previous labs:

Your almost there with current labs, but like I said your FT3 are lagging and that’s ok, but you probably feel it – tired etc. I would probably ask your doctor about conversion issues just to be safe – I say this because your FT3 has remained low in trend. Most people feel better when its higher, more energy, less weight gain etc.
3/13/13
TSH: 2.75
FT4: 3.8 (2.0-4.4)
FT3: 0.62 (0.93-1.70)

Just coming out of Hypo
2/12/13
TSH: 4.6 (0.270-4.20)
FT4: 2.2 (2.0-4.4)
FT3: 0.49 (0.93-1.70)

Just coming out of Hypo
1/12/13
TSH: 1.4
FT4: 2.4 (2.0-4.4)
FT3: 0.69 (0.93-1.70)

Just slightly Hyper
12/7/12
TSH: 0.054
FT4: 4.5 (2.0-4.4)
FT3: 1.22 (0.93-1.70)

Now, I don’t care what anyone says, she has the right to understand her labs so she can work TOGETHER with her doctor.

[Naisly]

in reply to: Is the Uptake Test Necessary? #1177126

Kimberly You are correct when you give the methods for determining dosage for RAI. But still, doctors usually use the calculated dose.

I must add as well that most new patients have not even started on treatment before the uptake. So doing the uptake first is like adding fuel to the fire.

The un-educated endo will schedule a uptake even before anything else is determined. An educated endo will palpitate the thyroid gland and see if there are any nodules, order a thyroid panel including TSI and or TRAb and order an ultrasound. At which point the scan can see size of thyroid and if there are nodules and size of nodules, the scan can also give ‘clues’ to whether there is any cancer (I should have made myself more clear before on this). The uptake cannot see any cancer. After all is said and done, at this point the endo can make the diagnoses. If there are concerning nodules, the endo can order a FNA, which the FNA is the only test to see if there is cancer.

The thing with the uptake is – it actually cannot give a ‘true’ diagnoses of GD because it could be anything such as – diffuse thyroid hyperplasia, toxic nodular goiter, thyrotoxicosis with hyperfunctioning adenomas. Hot nodules could be caused from something else. And yes it is treated the same if this was the case, as jenm05 said, her endo was looking for a diagnoses of GD.

Also, the uptake relies on the patient and if they followed guidelines of no iodine 2-3weeks prior to the test. Problem with this is the uptake can give a false/negative results because of this. And since it is not common knowledge on what food items actually have iodine in them makes if quite difficult. IE: Seafood, dairy products etc. (Yes, I do have a list of foods that contain iodine). Actually some technicians take this into account when evaluating the scan, but it is still hit or miss.

So my question is, why take the chance with an uptake when in this day and age we can get better results from less invading tests?

~Naisly

[Naisly]

in reply to: Euthyroid Eye Disease and Double Vision #1177170

Have you had your zinc checked? Low Zinc is known to effect eyes. I would also suggest getting copper and iron checked as well since all need balance for each to stay in range.

[Naisly]

in reply to: Is the Uptake Test Necessary? #1177120

Hi there,

As I said, TSI test is fundamental in testing for graves disease. This test is needed no matter what the out come. This test will help with your path to recovery as you and your doctor need to know how your treatment is progressing.

TSI antibodies not only occur for GD but for TED as well. This is why RAI (same with surgery but not as much) have a higher chance to develop TED.

The dose for the uptake might be small (for you information it is about 2-5rad, where as chest xray is well under .1rad) but that’s not the problem, it is the high amount of iodine one must take.

Even on ATA it states high amounts of iodine are not good while hyper – This is a fact. And why some doctors are not doing it. It is a contradiction to give the uptake while hyper.

An ultrasound (which is different than the uptake) CAN detect cancer and see nodules, this is becoming the preferred rule.

And just to let you know, I have 3 children as well. My son who is 17 was just diagnosed with ASD (google it). This is something I have been advocating since he was a baby. Some with my other son.

[Naisly]

in reply to: Is the Uptake Test Necessary? #1177118

A lot of doctors are now discouraging the uptake if antibody tests show confirmation of graves since it is a bit out dated. Basically they do the test to know how much RAI I-131 to give. Healthy people don’t have antibodies. If there are nodules and concern, then an ultrasound is the best test for that.

I will say that even without the radiation worry from the uptake – what’s even worse is the large amount of iodine given.

From personal experience, I had it done June 14th and I regret it. My thyroid became swollen and wasn’t before, so much so at times it was hard to swallow. I was so sick and had a hard time walking as all my muscles hurt. My TF4 went from 32 to 58 in the matter of a couple of weeks after the test. I would have never done it if I knew what I know now and I would just stick with the antibody tests. I do blame the uptake for me feeling so much worse.

I did ask both my internist and endo about this and they both said – Of course you would feel worse, your feeding your thyroid with the large amount of iodine.

[Naisly]

in reply to: Hyper Hormone Secretions? anyone know? #1176881

Hi again,

Just some info I gathered for you.

Sometimes Per menopause lasts 6 years or more, and
ends 1 year after the final menstrual period.

In some women an uneasy feeling or mild panic attack, occurs just before the hot flash. An increased pulse rate and a sensation of rapid heart beating may also occur.

Hot flashes often increase with stress and may be associated with palpitations (rapid heartbeat) and feelings of anxiety. The unsettling feeling that precedes a hot flash can mimic a panic attack in some women.

And because you feel so irritable during the day, that’s probably due to the fact your not getting the sleep you need because of the night sweats.

Antidepressants caused night sweats in 22% of users in one study.

Talk to your doctor about Flaxseed – some say this helps with symptoms (It is also good for graves).

Here is another article for you from The Center for Women’s Mental Health at Massachusetts General Hospital

I guess on the bright side of all of this is I’m learning a great deal about menopause!

I do hope your having a relaxing weekend.

~Naisly

[Naisly]

in reply to: Hyper Hormone Secretions? anyone know? #1176879

Hi there!

To add to what Shirley had said, check out this National Institute on Aging It very easy to read and has some great info about estrogen supplements. And since you have a hard time with stomach issues, you can get it in a patch, or spray etc. There are also more government links at the bottom of that article with 1-800 numbers.

Also, I did some looking for you and I came across this site that sells night gowns that apparently help with night sweats, made especially for menopausal women. Anyways, just Google – wicking nightgown. Read about it, I don’t know how they work personally, but I suppose it may be worth a shot.

You know, some women are misdiagnosed with menopause, some doctors actually think it’s Graves because the symptoms are nearly the same. I’m not saying this is you because I know you had high antibodies, I just think that’s sort of ironic since most times people are misdiagnosed with NOT having Graves.

I can’t imagine how hard this is for you, dealing with all of this at once – having the same symptoms from two separate issues can be very stressful. But on this note, Harpy is right (nice to see you back harpy), try to de-stress your life, eat healthy and advocate for your health.

I have to remind my doctor almost every visit to check something. I only know to ask because I have research it. Like my last visit, I asked for a vitamin D and iron test because I am feeling so lousy. Sure enough both are very low. I haven’t had either tested since Aug. and probably should have had them tested a lot sooner because both are so low now, that it will take a while for them to catch up – especially iron can take a very long time. But you see, this is something my doctor had missed. I’m not mad about it, I’m just glad I was educated enough to catch it before it got really bad. See what I’m saying?

Anyways, as always I hope this helps!

~Naisly

[Naisly]

in reply to: Thyroid hormone yo-yo #1176612

My question to your doctor would be – If I was in ‘normal’ range, why such a high dose of MMI? 10mg seems pretty high for normal. Ask if he is dosing using TSH or TF4. Your TSH seems to be moving fine and the TF4/TF3 will follow suit as Kimberly said. Also, yes, do what catstuart7 had mentioned and get copies of your labs.

For example, my labs are in range
TSH 3.9 (0.38-5.5)
TF4 10.8 (10.5-20.00)
TF3 5.4 (3.5-6.5)

Yet I still feel very hypo…

~Naisly

[Naisly]

in reply to: What does stable feel like? #1176607

You can always get 5mg pills instead of 10mg (assuming this is what your getting) Then you can talk to your doctor about taking 12.5mg and go from there.

I’m currently taking 2.5mg. But I have found with me personally, getting out of hypo has been a lot harder than hyper – Maybe this is why they call it hypohell?

[Naisly]

in reply to: Apology #1176552

There is nothing to forgive, we have all been there. So please hang in there, take your time and breath

~Naisly

[Naisly]

in reply to: Suspecting Graves in Teenage Girl #1176340

tsnreb525 wrote:

Can you tell when they are coming on? Is there any treatment for you to control them?
Bob

Looking back, I remember a feeling of doom and gloom – very negative. It didn’t matter what anyone said, to me they were wrong or just didn’t understand. This is a feeling I woke up with and carried it through out the day and sometimes it would carry on for a few days.

Everything seemed wrong, whether it was a noise, a person, thing or even my cat. I do have a hypersensitive personality to begin with but I can imagine for those who don’t, how this must feel to them. The doom and gloom for me is because we can’t focus, we hurt, we ache, we have no energy, we worry, we can’t even do meticulous small tasks like write our name, we can’t, we can’t and this in it self would drive anyone crazy. Because of that hypersensitive feeling – all those tasks that lay a head with a feeling of no control over them. This was usually my breaking point, that point of no return – Graves Rage.

It’s very much like being tortured every minute of every day – Enough to break a persons will.

I think, that if family members can help by removing some of the triggers – Like negativity and remove a lot of the daily commotion that goes on in every house hold would help. By commotion I mean things like, the dog needs to be let out, the phone is ringing, visitors are coming and going, the TV is on, the dishes need to be done, the brother is jumping on the couch again etc etc. Most people can deal just fine with this going on around them and think nothing of it – for us, we can’t deal with most of these tasks at times because of the physical aspect, but what puts me over the edge is I’m thinking and seeing all of this in one thought. Think of the movie the Exorcist and how her head was spinning – That’s how we feel.

For you, I would watch if your child is being overly negative because she might be near her breaking point.

Now that my numbers are nearly balanced I don’t get near as many episodes as I did when I was very hyper. In saying this, I can now look back and analyze why, at least for me. It also helped (hate to admit it) that my partner has a humorous side, and when I would get ‘off’ he would reply with, “Oh, gravy.” Which would usually make me smile.

Hope this helps,

~Naisly

[Naisly]

in reply to: Have GED – could not tolerate methimazole now having problems taking PTU #1176488

I seem to get muscle spasms when I am hypo, and flu like when I am hyper. I was waking up every morning for 2years feeling like I had the flu. Some mornings I still feel this way but I assume it is because I haven’t taken my 2.5mg MMI for 23 hours. I am also recognizing that when I eat certain foods I feel even worse in the morning.

What are the normal values for your labs? And did the dr order a CBC panel? If so how was that?

~Naisly

[Naisly]

in reply to: Have GED – could not tolerate methimazole now having problems taking PTU #1176486

What dose of MMI were you taking? And have you had recent labs, if so what are they?

~Naisly

[Naisly]

in reply to: Synthroid Recall #1176483

So it is a different recall as what was posted here? I’m confused because you mentioned that it was posted on here before. Is there another one I missed other than the link below?
http://www.gdatf.org/forum/topic/43121/

I don’t take that medication, I was just informing people since the report came out a couple days ago, my apologies.

~Naisy

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