[Bella1]

#1059640

I went to an Endo 10/12 to have my hypo-like symptoms resolved and found I was hyper!! My results seemed to shock the endo as much as me. My lab results were:

TSI: 412%; TSH: 0.00; Free T3: 9.7; Free T4: 3.43 and my

I-123 test results were 18.2% at 3 hrs and 46.1% at 24 hrs.

The endo put me on Methimazole, which I took for 8 weeks with continually lowered doses. After 8 weeks, the clinic called and told me my results were normal. I assumed, after lowering the meds all the way down to 1/2 of a 10 mg pill a day that I was ‘cured’ and was supposed to stop taking any. (The endo had not explained anything at all to me.) Anyway, 1 week later I caught a cold, which seemed to bring on some of the craziest experiences I have ever had. Racing, irrational thoughts, over-whelming bouts of anger, unable to make decisions at all and a sense of insecurity and anxiety. I’m having trouble sleeping and I don’t feel that I can trust my judgment right now, so my husband has stepped in.

I called the endo back and told him that my new symptoms seemed to come on with the cold. He said that’s not possible, told me to go back on 1/2 a tab a day, and to go back to my primary care for monitoring. However, all these new symptoms are barely abated by the meds. So, I tried to go up 1/2 tab a day and I get Hypo, then I drop back down 1/2 and I’m hyper!!!! Right now I’m taking 2 1/2 10 mg tabs a day.

I should say that I had no hyper symptoms before this. I weigh 260 lbs, I’ve been freezing and exhausted for 10 years, my hair is falling out and I have the energy level of a sloth. But now, I seem to have both hyper and hypo symptoms. How can this be possible?

I do have an appt w/ my PC on the 22nd to get my meds straightened out, but does anybody have any similar experiences?

[catstuart7]

#1176377

Hi Bella, welcome and much sympathies for you having to join our club. I’m similar to you in that I have had mostly hypo symptoms over the last decade – have one lab test only that proves it from years ago and am overweight. Graves hit me officially last March. I can’t tell you how frustrating it is to have Graves and not to at least have gotten supermodel thin!!! I think it threw off docs from looking for it the first time I came in with an elevated heart rate.

I’ve also had an odd mix of hyper and hypo symptoms related to dose changes. Things get confusing because your symptoms can reflect the change that is occurring in your levels as well as just which they are objectively at. But yes stopping your meds was not good – you will need to be on them a couple years at least unless you get remission, or RAI/surgery in which case you’ll be on replacement meds. So it is a good thing you are back on them but you may need to go through the full three week process before relief kicks in – three weeks seems to be the magic time for relief and rashes with methimazole. If I were you I would not wait till the 22nd, that is 12 long days away – better to demand labs now including Free T4 and Free T3 to know where you are at. It’s very hard to be successfully demanding when you feel crazy and bad, but we can only do our best

[snelsen]

#1176378

As you know, we are all patients here, experiencing some phase of Graves’ or Hashimoto’s or TED.
But, my heart really goes out to you! You are quite a puzzle, and I am wondering if your primary care doc has the fund of knowledge to think carefully about your symptoms. And he might be the right person. From what your endo said, it does seem that he is not interested in caring for you, working with you, with your very real problems and symptoms. I wonder if Hashimoto’s has been a consideration? You definitely need good care, and someone to really care about you and your life. Seems like you are carrying a lot of weight, but if you have felt like a slug for 10 years, with feeling hyPO, everything is working against you!
I look forward to the facilitators seeing your post and responding.
Do you have a choice of finding a really good endo? Or begin with your primary doc, and be candid with him/her, and ask him to take a careful history, and think about a differential diagnosis, including mentioning Hashimoto’s.
If he is the one who referred to the endo you had, ask him for another referral of one who really cares about Graves’, not just diabetes.
Welcome to the site, it is the best.
Shirley

[Bella1]

#1176379

To catstuart7:

I have been most confused by my conflicting symptoms, so it’s helpful to know that others are going through the same. I too am disappointed that I have a disease that is supposed to make me thin, but I’m not. That would have been a nice benefit.

And thanks for the info on the 3 weeks ’til effect, because I’m starting to feel like the Mad Hatter. I’ve developed some phobic-like feelings of dealing with anyone, so my husband has started going with me everywhere. I feel confused because I am so outgoing, confident, gregarious and opinionated, but suddenly I’m reduced to a terrified, paranoid-like person who can’t make a decision.

I think I’ll get moving on the surgery because living like this is unbearable.

[Bella1]

#1176380

To snelson:

Thanks for your support. I would have thought I had Hashimotos too, but I have been tested for all 3 antibodies, and only came back positive for TSI, which indicates I definately have the Graves antibody. I also do not have diabetes, which I’m really glad about.

This is unreal. How do you guys deal with this so long and so well? As I posted earlier, I’m going to find a better endo and push for the surgery since the effects of hypo are not so directly debilitating. I can deal with being tired, not crazy.

[Bella1]

#1176381

Can anyone explain what these results mean other than that I have Graves?
Are they low or high, and is this what most Graves’ patients values look like?
My endo really didn’t explain anything to me.

Thanks.

TSI: 412%; TSH: 0.00; Free T3: 9.7; Free T4: 3.43 and my

I-123 test results were 18.2% at 3 hrs and 46.1% at 24 hrs.

I also have a normal-shaped thyroid (no nodes) with greater uptake on the right side. So, I don’t think it’s any kind of cancer.

[catstuart7]

#1176382

Modifying since what I was responding to is deleted. Wishing you the best Bella, hang in there!

[Bella1]

#1176384

To: Catstuart7

Thanks, and I will try to get in for labs before the appt.

Here are my lab’s normal ranges:

TSI: less than 140% mine: 412%

TSH: 0.30 – 5.00 mine: 0.00

FT3: 2.3 – 4.2 mine: 9.7

FT4: 0.71 – 1.85 mine: 3.43

I-123 Test

3 hrs: 4 – 10% mine: 18.2

24 hrs: 10 – 30% mine: 46.1

[Kimberly]

#1176385

Hello and welcome! A couple of comments…

First, we are fellow patients here, not docs, so we are not allowed to interpret labs or give medical advice. In general, though, T3 and T4 represent the actual levels of thyroid hormone circulating in your body. T3 is the more powerful and active hormone of the two. Some tests will measure the amount of T3 or T4 that are not bound up by proteins, and therefore available for the body to use. These are referred to as “Free T3” and “Free T4”.

TSH is a substance produced by the pituitary gland that either directs the thyroid gland to produce more hormone or tells the body to put the brakes on thyroid hormone production. The amount of TSH produced generally depends on a “feedback loop” according to where our thyroid hormone levels (T3 and T4) are. When T3/T4 are too high (hypER) the pituitary shuts down production of TSH so that the thyroid won’t produce any *extra* hormone. When T3/T4 are too low (hypO) the pituitary cranks out TSH to get the thyroid to produce MORE thyroid hormone.

The latest medical guidance suggests taking anti-thyroid drugs like Methimazole for a period of 12-18 months, although some patients remain on these drugs longer term. Antibody (TRAb) testing is recommended prior to withdrawing anti-thyroid drugs. The reason is that if antibodies are still raging in a Graves’ patient, withdrawal of the drugs will likely lead to a recurrence of hypERthyroidism.

Finally, it’s important to take anti-thyroid drugs consistently from day to day. It can take a few visits with your doctor to find the “sweet spot” dosage that will keep your levels normal and stable. Switching up the dose from day to day will actually make this process *more* difficult. If you ever start feeling a major shift in your symptoms, it’s better to call your doc’s office to ask for a new set of lab work, rather than constantly tweaking the meds.

Take care – and please check back to let us know how you are doing!

[catstuart7]

#1176383

Those ranges are pretty similar to those for my lab so yeah pretty darn hyper! I hope you can get in soon and see where you are at today. I went from hyper to down near hypo in the span of only one month on PTU – change can happen fast. Many docs in the beginning do labs at least every six weeks.

[Bella1]

#1176386

Kimberly wrote:

Hello and welcome! A couple of comments…

Thank you for the information. I had been told that T3 and T4, when high reduce TSH to nothing but I didn’t realize why. That is already more than my endo explained.

I am taking my meds regularly now and am starting to feel some relief (a little more balanced). Thanks again.

[Bella1]

#1176387

catstuart7 wrote:

Those ranges are pretty similar to those for my lab so yeah pretty darn hyper! I hope you can get in soon and see where you are at today. I went from hyper to down near hypo in the span of only one month on PTU – change can happen fast. Many docs in the beginning do labs at least every six weeks.

Thanks for the feedback. I’m on a waiting list this week to get in to see a new endo. But I really am starting to feel more balanced in just the few days since I last posted.

I am already considering surgery because it seems to me the best protection against hyperthyroidism, is low thyroid. I mean, eye, soft tissue and heart damage are huge risks to take. However, if those issues can be prevented from happening, it might be worth the risk. I will give management a go first, though.

Also, I have a question. When my TSH/T3/T4 feedback loop is managed, does that guarantee that my TSI is reduced? If I can’t get my TSI to reduce, does that mean that the possibility for damage continues? I know you’re not a doctor, but I was wondering if you knew.

Thanks.

[Kimberly]

#1176388

Bella1 wrote:

Also, I have a question. When my TSH/T3/T4 feedback loop is managed, does that guarantee that my TSI is reduced? If I can’t get my TSI to reduce, does that mean that the possibility for damage continues?

Hello – This is actually an area of controversy! Some docs believe that getting the feedback loop to stabilize has a direct impact on reducing antibody levels.

Others believe that it’s the anti-thyroid drugs themselves that have an impact on antibodies.

As for the significance of TSI, some docs believe that this has a direct correlation with the presence and severity of eye symptoms, while others do not.

There is *so* much that remains unknown about Graves’ disease and eye involvement! Hopefully, one day, we will have better answers for all of this!

[Bella1]

#1176389

Kimberly wrote:

In an attempt to find some answers about TSI effects and remission, I came across an article yesterday at Thyroid.org in the New Research section which has a new study (backed up by 2 previous studies) that shows that Graves’ TSI also affects thyroid-like tissue in the brain. I wasn’t able to find the link to the study when I went back, but they were able to show damage and diminished blood flow to the right frontal lobe (rational thought and decision-making), which may be the cause of the emotional and cognitive side effects of TSI. The worst part was that they believed the damage done to the brain tissue may not be reversible even when or if TSI is reduced. So we may have more to worry about than just eye and heart damage from sustained high levels of TSI.

Kimberly, would you know if TSI reduction is more likely with drug, RAI or TT treatment? Because that seems to be the imperative in Graves treatment.

Thanks.

[Bella1]

#1176390

Catstuart7

Sorry. every time I hit the tab key I get kicked out of the message I’m posting.

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