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in reply to: Where are all the TT’ers? #1181885

Your husband must be a good man Sue! I always feel for people writing about the strain on their marriages. Sometimes I wish I were married going through this for the support, but on the other hand as crazy as I get sometimes it might have wrecked a marriage.

Twice in the journey I’ve come very close to remission – feeling really normal, dosage reductions needed after every lab. Both times I lost it due to extreme external life stress events. So part of me doesn’t want to give up because I believe it is possible! But then I can’t control the universe. I’ll try for a bit longer since surgery isn’t feasible so who knows.

Anyway, enough about me! I’d like to hear from more TT veterans too. Looks like AZGravesGuy is soon to join you.

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in reply to: Where are all the TT’ers? #1181883

Oh yeah, it’s the fact that it affects my mind that makes it hardest to deal with. For me it’s more depression and anger that fluctuate with the levels, though anxiety is in the mix too. It ain’t fun! I’m glad your doctor was finally willing to listen to you – I think unless they have Graves themselves they can’t imagine what it is like.

As for me and surgery, financially and personally it’s just a no-go for me now. Maybe in a year or two. Fortunately I respond very well to methimazole so I can stay on the roller coaster for a while – though not necessarily happier. But hey there’s always that next dosage change around the corner that might be the one!

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in reply to: Where are all the TT’ers? #1181881

That’s awesome Sue – I love that cream too. It has such a lovely texture and I swear it still helps my eyes look better.

I asked about your anxiety during remissions because sometimes I wonder if I made the right decision not to have the TT. My life situation really doesn’t support me having surgery of any kind right now, yet it is coming on two years fight with Graves and I’m frustrated. The “sweet spot” of the right medication dosage keeps changing for me even when I do find it. My endo offered the TT option a couple months in and I told her no I wanted remission. Now I’m not sure what I want…or can get for that matter!

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in reply to: Where are all the TT’ers? #1181879

Hi Sue, good to hear your perm went well! I’m thinking of coloring my hair but I’ve been a little leary too of it making it fall out more. Did you every get try out the azulene cream?

If I remember right you had a few periods of remission from Graves – did your anxiety improve at all during those times?

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in reply to: Thyrotoxic Myopathy #1181525

Weakness in my hands and dropping things I was holding was one of the first “off” signs when I was in the hypothyroidism phase years before Graves took hold. During the hyperthyroid pre-diagnosis months I also unexpectedly dropped many things. I was very embarrassed and scared I was developing MS. I haven’t been able to open a jar in ages – always have to use the kitchen gadget for it.

Since your recovery seems stalled have you investigated working with your endo to adjust where you are inside of the normal range for your labs? I can have real hyper and hypo symptoms while still technically being in range and most others can too. Those ranges are just too broad, so anybody who just tells you your values are “normal” and calls it good can still do more fine tuning. I hope you get some relief soon.

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in reply to: Decision to make btw ATD and TT #1181700

Nodule Girl here, yep it’s standard procedure really to have the thyroid ultrasound done as part of your original thyroid work up when you get diagnosed with Graves’. I was told there is a 1 in 10 chance that any individual nodule could be cancerous. Fortunately I was okay and I declined surgery at the time though as time stretches by still feeling unwell despite “good” numbers well over a year I wonder if I’ll get a TT one day myself.

I’ve read of a lot of cases though where people had a TT even if they had no nodules for just the Graves. You’ve got lifetime consequences no matter path you choose unless you get a lasting remission.

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in reply to: Too long between tests? #1181864

Like Nancy, the rule for me too was 4-6 weeks for labs after every change in medication. Maybe when that time rolls around you can call your endo’s office and request new labs? I’m trying to remember did you ever try Cytomel? Did your doctor have any thoughts about why on 10/31 your FT3 was relatively low compared to your FT4? Good luck and I hope you find the balance soon!

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in reply to: Herbs and Graves, my experience #1181854

Shirley and all, I made a point to mention that my endocrinologist (selenium) and ophthalmologist (fish and flax oil) both were recommending supplements since this is a medically conservative board. There are in fact studies showing real benefit particularly for the selenium with TED and Omega-3’s for inflammation in general. While the FDA does not regulate supplements, it is possible to do careful research and find reputable brands that do quality testing. Let’s not shut down discussion on supplements especially when a person is taking them under the supervision of an MD with positive results and is sharing it to help others with this infernal disease.

Also FDA approval is hardly a guarantee, see the tens of thousands of deaths from Vioxx. No matter what we take prescription or supplement, we must always be vigilant.

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in reply to: Herbs and Graves, my experience #1181850

Thanks for sharing nbark! I think there’s value in knowing what alternative treatments may hold promise. I started taking 200mcg of selenium a day based on studies that it might moderate TED long before my endocrinologist told me too, now she’s behind it. My ophthalmologist tells me to take flax or fish oil to help with conjunctival inflammation that I’ve had. It’s great if we can take the best of both worlds if we can.

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in reply to: What Questions Do You Have About Thyroid Eye Disease (For Our Upcoming San Diego Event) #1181808

Sorry you guys have had the same trouble – I’ll sure be interested to hear what the Shiley folks say. Kimberly, for those of us who can’t go to the conference will there be videos?

I just thought of another question….

Does TED act differently when a person is hyper vs. hypo?

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in reply to: What Questions Do You Have About Thyroid Eye Disease (For Our Upcoming San Diego Event) #1181804

I’d be interested in a discussion of all the non-proptosis symptoms. It seems that doctors have no doubts about it being TED with clear proptosis, but the other symptoms seem to get ignored or attributed to something else. Dry eye, inflamed conjunctiva, eye muscle pain things like that. For me the inflamed conjunctiva and dry eye were my very first symptoms a full year before Graves’ onset. The actual eye muscle pain didn’t start till I was clinically hyper. I went to see the ophthalmologist the year before and he just shoved some Restasis at me and sent me on my way – I didn’t even know to ask if there a thyroid connection back then. Oh and I had a similar milder flare a few years before that and was given some “eye vitamins” and told to go away.

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in reply to: lowered meds with confusing results #1181822

I’ve had some of this – in my case it is an issue that the level of activity of the Graves’ changes over time. It’s a moving target so to speak. So it’s not like you’ll get the same effect necessarily each time with the same dosage change. Fun fun fun. As long as you only make small changes and check labs in 4-6 weeks you won’t get into too much trouble. 😎

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in reply to: Thyrotoxic Myopathy #1181519

I might have some experiences that could be helpful. I’m still bouncing from too low to too high in my thyroid levels (for me) though all these values are very much in the normal range. It seems that the sweet spot my values need to be at is very narrow indeed (like 0.1 too much or too little matters) and even once I reach it illness or stress can change the point. So still not having fun yet.

But I have some exercise experience that might help. When I’m a little too high (but not full hyper) I have more energy, feel like I must be active but there’s a feeling of weak caffeinated edginess to it. Exercise doesn’t build strength or stamina when I’m like that even though I feel driven to do it. When I’m a little too low, there’s not as much energy as I expect to have and even when I do exercise I get injured quite easily. Even contracting a muscle too hard (like pulling up the emergency brake very hard in my car) is enough to make my arm have odd muscle and joint pains. So basically until you get to the ideal thyroid level and stay there, even if you are a little off, there could be issues with building physical fitness. At this point I am about 80% as active as I was before I got sick, but I was a couch potato – I now walk about 30 minutes 5x’s a week without lingering pains afterward. I do still have some injury if I push a muscle unexpectedly hard though. I hope some of that helps.

Good luck!

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in reply to: Maximum amount of time you can be on meds? #1181757

There is a wide degree of variation in how different doctors approach treating GD. One doctor will say 18 months ATD’s and that’s it! One might say no PTU ever only methimazole Another might say if you relapse once ATD’s are no longer an option, out with it! Or another says that’s okay, but if you relapse twice out! Some say testing the antibodies matters, others don’t. So basically if in doubt get a second opinion, it might surprise you.

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in reply to: organization abilities compromised #1181728

Barbra, just wanted to add I have the jumpy thoughts too sometimes when I’m a little on the hyper side but not otherwise – once I’m hypo the thoughts slow way down.

Kimberly, I like that idea of having these systems in place and creating strong habits – I really don’t and I guess it’s time because yep it’s all sliding into chaos over here.

Sue, now this is interesting that you don’t have this problem – you’ve been diagnosed with GD for a few years if I remember right? That’s what confuses me so much, I’ll want to say a symptom I have is caused by the GD but it can’t be because then everyone would have it!

For your plan/people problem, I find that keeping my sleep/activity/eating very consistent keeps my available energy very consistent as long as I’m not adjusting to changing thyroid levels. BUT there’s very little flex to this – if unexpected demands happen then energy/focus plummets. I have distant memories of being more resilient than that before GD. Glad you liked my give up and get on with your life philosophy

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