[SueAndHerZoo]

#1060068

I think I’ve asked a similar question once or twice before so please forgive the redundancy but this drive me nuts!

I’ve got Graves, had it for 6 years, scheduled for TT July 16th.

What confuses me is that I can feel OK for a few days or even a week but then have “episodes” where I feel like I got hit by a truck, shaking, exhausted, panicky, etc. and then it lasts for 2-3 days (but less severe). The first time I thought I caught a bug, the next time I thought it was a hypoglycemic type of thing, and now this time, I’m stumped. They just come out of nowhere with no rhyme or reason.

I guess my question is, even though my labs are finally in the normal range and I feel OK for the most part, might I still be getting surges or spikes of thyroid hormone that make me feel bad for a day or two?

I’m hoping that’s the case and that this will all be a thing of the past in 6 months or so.

Thanks in advance.
Sue

[Stymie]

#1180099

Hi sue!

Have you noticed if they coincide with your female cycle?

I have noticed I will get anxiety about 2-3 days before my menses and around when I ovulate. I think it’s a surge in hormones alright. Just don’t know if the hormones clash or get too high which increases the anxiety?

Idk. I’m just throwing it out there since it seems to be my experience…

Diane

[Kimberly]

#1180100

Hi Sue – I’ve heard of spikes associated with the destructive process that occurs with Hashimoto’s thyroiditis or with RAI. However, your doctor would be the best person to consult regarding whether T4 can go through sudden spikes in other cases.

[SueAndHerZoo]

#1180101

All done with menstrual cycles….. 56 years old.

I’m guessing that surges or spikes may not be common or we would have heard more about it. Who knows…. maybe I’ve got some Hashimoto’s going on, too. I have had this goiter for over 25 years but was only diagnosed with Graves 6 years ago… wouldn’t be surprised if I have both going on.

I was hoping to feel “normal” before I went in for surgery since that would make it easier to find a “normal” after surgery, but at this point I’m willing to just accept that I’ll have to get to re-know myself after surgery and find a new me and consider that my new normal.

Thanks.
Sue

[msled]

#1180102

Hi Sue,

I am in the same boat, 57 and post menopause. I was told that estrogen def. post menopausal is a contributing factor. The only problem is estrogen blocks TSH receptors (I have found that out through personal experience and by contacting the pharmaceutical companies. When my dose is increased to accommodate the estrogen my whole system goes out of wack. As you have said I have days when I feel well then flu like days. I spoke to another Dr. who told me even though I had a hysterectomy I should be using progesterone too for estrogen dominance. I did that last year without a dose increase and felt well, my endo. did not like my thyroid numbers so the 6 week increases started and the extreme fatigue , emotional problems and anxiety/panic. My increase started with .1 and .112 alternate days and within 6 weeks I was told to take .112 and .125 (4 days a week). I was shaking so much that I was afraid to drive to the clinic for help. My dose was dropped and I started to feel better until my endo told me to increase again!!! I have never taken a dose I was not told to take, this time I had to insist that I drop it or go mad!!!

msled

[SueAndHerZoo]

#1180103

Wow, Msled, what a challenge. And when we’re feeling so lousy it’s hard to think straight and know what to do but by now we all know that we have to be our own doctors. Only WE know what feels best and what doesn’t. I think we all need to get our medical degrees so we can heal ourselves.

So sorry you’re going through this.
Sue

[msled]

#1180104

Hi Sue,

I have added a part of an estrogen patch (my GP agreed) to help supress my thyroid dose. The dry mouth is a concern especially when I had so much dental work done a few years ago (I can have a panic attack just thinking about dental problems, my biggest fear). I have been on .1 for two weeks now so by next week I should be able to cut back on the estrogen and notice the anxiety/panic attacks to subside. I was on .1’s for well over a year before my levels dropped. I found Kimberly’s comment to be interesting. I did not know that there would be fluctuations. Instead of raising my dose so much (and also blaming everything on estrogen) my endo. should have considered this. Do you know anything about cytomel? I know my endo will not prescribe it nor armour.

Right now I have the energy (too much), anxiety over the heart rate changes, and of course everything else. I went through this in 2002 and did not think I would have to deal with it yet again.

Does your family support you emotionally? I live on my own since my husband died and my sons’ are married and busy with their own lives. I have a couple of close friends who have helped me out during the sob nights or ER visits when my BP and heart rate go through the roof. I am hoping that things settle soon.

Marg

[msled]

#1180105

Made a big mistake tonight…ate a choc. cookie and had a cup of tea!!! ALso flossed my teeth, dry gums = cuts inbetween my teeth. Back to salt water rinses and hopefully Ativan to help me sleep.

Marg

[msled]

#1180106

Kimberly is this also the case when levels drop after RIA.

Marg

[SueAndHerZoo]

#1180107

msled wrote:

Made a big mistake tonight…ate a choc. cookie and had a cup of tea!!! ALso flossed my teeth, dry gums = cuts inbetween my teeth. Back to salt water rinses and hopefully Ativan to help me sleep.

Marg

Why was a cookie and tea a mistake? Geez, you would think you at least deserve an occasional (or daily) treat for yourself!

Here’s hoping the patch work and things settle down soon. We all deserve a purple heart for all that we suffer and deal with.

So sorry you’re going through this.
Sue

[Boomer]

#1180108

Still getting hit with those whammys out of the blue huh? I’d be frustrated/scared/you name it too by now.

I’m really hoping that in just couple more weeks all of these things that have been troubling you for so long will cease and desist. You’ve paid enough dues for ten people and it’s high time you caught a break.

Hang in there Sue – it won’t be long and you’re gonna be so stable and consistant that you’re gonna get bored. I hope so anyhow!

Keep us posted and in the mean time stay positive, hopeful, and brave as always.

Peace,

Boomer

[Kimberly]

#1180109

msled wrote:

Kimberly is this also the case when levels drop after RIA.

Marg

Hello – Are you asking about thyroid hormone spikes post-RAI? This can happen in some individuals in the very early days/weeks after RAI treatment. The thyroid stores a certain amount of hormone inside the gland, and the destructive activity from RAI can release these stores in one large “dump”, causing thyroid levels and hyperthyroid symptoms to temporarily worsen.

[msled]

#1180110

Hi Sue,

The caffeine in the chocolate cookie and tea impacted my heart rate…which has happened before. That is one way that I know I am too high. I am only into week 2 of the dose I took two years ago .1 so I have one more week to go. I noticed the anxiety was not as bad today, I actually went out today and bought groceries and my bathroom breaks have settled a bit!!!

I walked my dog tonight too, muscle weakness and pain but manageable. I have heard that it can take 6 months for the muscle problems to resolve. My GP wants me to have another bone scan done too. I know my endo. has ordered several blood tests as she does not believe that the dose is too high, she said I am hypo and hyper (as my TSH is suppressed with the .112’s) That was driving me nuts!!! A lot of the swelling has come out of my eyes but my mouth is still dry and my gums hurt.

The cookie was worth the heart palpitations though
Marg

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