[Ski]

in reply to: does thyroid med cause stomach and esophagus irritation? #1182725

One comment – if you eat along with the replacement thyroid hormone to ease your symptoms, you may need to re-adjust your dosage due to the change in absorption, but it can be done. You should keep the type and amount of food a constant, so that the adjustments will be accurate, and avoid minerals (such as calcium and iron). Also, keep in mind that if you change your habits again, you will need to follow up with labs to keep everything in balance.

[Ski]

in reply to: Out of remission #1182504

One of the most comment effects of a thyroid hormone imbalance is “thinking” issues — I remember that when I was hyperthyroid, I was scatterbrained and couldn’t keep things in my head for more than a moment (at times). When I was hypothyroid, I couldn’t even make thoughts come into my head. Once your levels are better, this ought to clear up (well, after they’re better and also stable)…. Hang in, I know it’s awfully disconcerting!!

[Ski]

in reply to: Still chasing Goldilocks dose of ATD #1182494

Hi Flora,

It’s good advice to let your body settle a bit after a dose change, but I also wanted to confirm your feeling that the range of “normal” thyroid hormone levels is quite large, but your personal “BEST” is likely a specific spot somewhere within that normal range. It’s wise to look for the exact best spot for you, and your doctor ought to be supportive of that. Keeping a journal of your symptoms can really help with the discussion, doctors love data.

[Ski]

in reply to: Anyone here an expert on lab results? #1182034

Hi Connypie,

The overall healing from Graves’ can take much, much longer than normalizing thyroid hormone levels. In fact, until your thyroid hormone levels are normal (for you), and stable, your body is not truly even healthy enough to begin the healing process. Try to look at it as a “better each day” kind of thing — look to the improvements you can find in today vs. yesterday, that way you’ll see the positive movement and celebrate it. “Back to normal” is the ultimate goal, but you get there in small steps. You WILL get there!

[Ski]

in reply to: Hypo after RAI #1182437

RAI takes a while to fully do its work, and then your body takes a while to fully react, so there’s almost always a period of up/down feelings. The same kind of thing can happen when you are going through dosage changes of replacement hormone — there can be a few weeks of unsettled symptoms — and it’s important to ride it out, we cannot tell day to day where our levels lie, because symptoms of each imbalance (hypo and hyper) can be the same. Typically you need at least six weeks to see the results in your blood levels and be sure of how it’s going.

[Ski]

in reply to: What is your life like after RAI ? #1182379

RAI was my choice (in 1999), and I have few issues with thyroid levels now — I’ll always need to check periodically, but nothing’s run off the rails since my thyroid’s been gone. The one piece of advice I would give is that the initial dose is large enough for complete ablation — at the time I took my (first) RAI, there was still some hope that “just enough” could do the job, but the prevailing wisdom now holds that total ablation ought to be the original goal, and I would agree. I did need a second RAI, and since the first had done its job the best it could, my uptake percentage was much lower and so the second dose had to be higher than the first in order to get the job finally done. I also lived for a period of time in a “sub-clinical hyperthyroid” state, meaning my T4 appeared to be normal, but the TSH was suppressed. I did not feel completely well during that time, but once the second RAI had finished the job, I was able to find true normal for me. It does take a while afterward, but again, total ablation makes it quicker. If the thyroid isn’t completely gone after RAI, you end up with something of a “double whammy” where your thyroid function is coming down, but it’s also responding to the antibodies, so it’s unpredictable and hard to control.

Still, though — this is just one treatment that will “remove” your thyroid. If you’re more comfortable with surgery, your doctor ought to respect that decision.

[Ski]

in reply to: Just diagnosed today #1182315

Hi lileone,

Glad you found us, sorry you’ve joined the club, but there’s help here.

If you don’t like the idea of RAI, and are unable to take the ATDs, then of course the third possibility is surgical removal of the thyroid. Many people here have chosen that option, and are very happy with the results. If you can’t take ATDs, that could complicate things, since even those who choose surgery will typically use ATDs to bring blood levels into the normal range prior to having the surgery done. It can be extremely dangerous to have surgery while hyperthyroid.

Still, RAI was my choice (after considering all of them), and I’m perfectly happy with the results. The only thing I would’ve changed about my experience is that I would’ve opted for an ablative dose, rather than what was known at the time as a “therapeutic dose,” ostensibly meant to give me “just enough” to bring levels normal and leave my thyroid functioning. Turns out that any remaining thyroid tissue is vulnerable to the antibodies, and so there really is no such thing as a therapeutic dose, and it’s far better to do it once and be sure you’ve destroyed the thyroid completely. I ended up with a period of subclinical hyperthyroidism, and ultimately a second dose of RAI, before I really, truly began feeling well. Any improvement is a relief, when it comes to Graves’, so I was feeling better all the time, but I felt truly healthy once my thyroid was completely gone and my replacement dose had been fairly well dialed in. That can take a while, so no sugar-coating it here, but when the end result is feeling normal again, you bet all the time you need is worth it!

Good luck, let us know how it’s going!

[Ski]

in reply to: orbital decompression surgery #1182248

Hi Laurafree,

You can put that info in your “signature” — look in your “Profile” for this bulletin board, under the “Personality” link, and you’ll see a box for signature. Put whatever you like in there, and it’ll show up at the end of each post you make!

I see you’ve got lots of great advice on your question already, just jumped in to help out with the signature.

[Ski]

in reply to: Double vision help? #1182006

Hi there, and welcome!

Sorry to hear you’re dealing with this! I think the first thing I want to confirm is that you know when your doctors talk about the “hot phase,” they’re talking solely about the TED, which has its own separate disease curve from the thyroid disease. While there is some evidence that TED symptoms can worsen while we are experiencing hypothyroidism, finding your correct thyroid hormone level may not do very much to improve the eye symptoms overall. I know, that’s not what you’d like to hear, but I think it’s important to be realistic.

The double vision is a particularly annoying feature of TED — the tiniest of changes between the two eyes’ tracking abilities can cause it, so then it’s just a question of degree. Prisms can be helpful, if your issue is stable, but during this phase of TED, symptoms can change in a rather random way. I’m sure you’ve had the baseline talk about TED, but just to be completely clear, the symptom of double vision is typically due to the swelling of the muscles around the eye, to the point where movement in one direction or another is impeded for one or both eyes. Not all the muscles swell, and to make things even more complicated, they can swell and shrink apparently on a whim, so the origin of the double vision can change, meaning the prism would need to be moved in order to accommodate the new direction, as things change. Stick-on prisms can be moved to accommodate, but that can be frustrating too (multiple appointments, etc.).

Using a patch to have single vision can be a really good solution, as long as you swap eyes now and again in order to avoid either eye becoming weakened by lack of use. The complication with that is the fact that you lose depth perception, so you need to be extra careful if you’re forced to drive with a patch.

When your eyes ultimately become stable, you can evaluate where you are and see whether you need surgical correction to maintain single vision. Most patients have some improvement at the final (third) phase of TED — I had some proptosis that made me look different, and it ultimately went away to the point that my eyes look nearly the same as when I started. My issue was minor, to be sure, but I do know that improvement comes, so it pays to wait through the process because correction too early can cause worse problems for some (surgery can stimulate the antibodies and cause more swelling), and if you made corrections that ultimately corrected themselves, you’d need correction for the initial correction, which would be rather annoying.

I doubt any of this is new information for you, and I hope more people jump in who have been through it, but I hope this helps, at least to know!

[Ski]

in reply to: My journey and a question #1181900

Welcome, buriedsunshine!

Your sunshine will come out again, I promise.

Believe it or not, you are kind of early in the process, and it actually sounds like you’re doing exactly the right thing for now. You need to focus on you, be grateful for small improvements, and keep your eye on the prize. You WILL get there. Thyroid hormone issues can take a while to resolve completely — I remember when I was diagnosed, the first thing my Dad said to me was “if you’re like everyone else I know with a thyroid problem, get ready for a long ride!” Not easy when it’s Graves’, but that’s exactly the attitude you have to take to keep your sanity.

You have come a LONG way and you sound like you’ve learned a lot, so try and celebrate the good things that have come from this, do whatever you can to get back to normal (even if it’s baby baby baby steps), and make sure to be your own best cheerleader along the way. Only YOU know how hard it can be, and only YOU know how hard you’re working, so pat yourself on the back and smile. If you have to say no to some things because you know that your body will not tolerate that right now, that’s fine. Make sure you say yes to things that fill your soul, that sustain you, and say no to things that tend to drain you.

Even patient-to-patient, this can vary widely, so I would not waste any time comparing yourself to anyone else. Try to notice improvements each day so you realize you’re headed in the right direction, that’s the goal. And I know this sounds perverse, but even when you’re figuring out your best replacement dose and perhaps over (or under)shoot your goal, try to breathe deep and realize that you have still learned something and moved forward, even though it may not feel that way in your body.

I would think this could be a really tough time to be looking for work, both due to the job market and also due to your health — if it were me, given that you have a “safe place” right now, I would keep looking as you’re progressing toward better health, and if something really jumps out at you and makes you excited, then it’d be worth exploring that, because that kind of job could easily HELP in your healing. And bottom line, each day you’re getting closer to feeling well again, so you can be confident of that much.

I’ll admit, when I was where you are, I was working, I had two little children to care for, and sometimes I thought I might just collapse, and probably a few times I did. I vividly recall missing something important for one of their classes and feeling as though the world would end. My kids were extremely forgiving (old enough to have developed the ability, thank God!), and it ended up being okay. Definitely had to stick close to home, do only the essentials, ask for help where it was available, but made it through without damaging myself or any member of my family.

So glad you shared! Let us know how things progress, you’re truly paying it forward by telling the tale.

[Ski]

in reply to: New Dx of Graves, started med today #1181896

I have heard of people experiencing allergic reactions, but I’m not sure the symptoms they experienced match yours. My recollection is that those reactions were more classically allergy symptoms such as hives and itching, not so much flu-like, but perhaps you’ll get more input on that. In any case, I hope you feel better, and welcome to the Graves’ community — you’ll find LOTS of support here, glad you found us!

[Ski]

in reply to: Thyrotoxic Myopathy #1181526

Excellent suggestion, Raspberry, and worth a shot, karengibson. It’s true that the normal range for thyroid hormone levels is wide, but our own individual perfect SPOT is extremely narrow, and finding it can be a challenge, but the effort is worth it. If you happen to have thyroid levels that were drawn PRIOR to your illness (perhaps an old physical exam), it could help you find the truly right spot for your body. It may take time to get there, but it’d be worth it, when you think about feeling truly well every day thereafter.

[Ski]

in reply to: Does anyone else have experience with 10 radiation treatments #1181813

If you’re talking about the radiation treatments directly to the eye, for treating TED, I know that it can be effective during the early phases of TED, but is not typically effective in later phases. Doctors can use it as one way to minimize the major changes that can occur, while you “wait out” the typical TED curve. Sometimes it is used in conjunction with oral steroids, to minimize the amount of either treatment you need, since they both carry some level of risk.

I’m sure it’s tough to make the decision. I don’t have any resources to point you to for help, but the advice of a second doctor may well give you a higher comfort level.

[Ski]

in reply to: Coping with the holidays #1175465

Thanks for the bump, Kimberly!

Remember that the most precious thing about the holiday is the time we spend with each other, and nothing else is even close in importance.

This year was our first Thanksgiving as vegetarians, which was further complicated by the fact that we were planning to drive 300 miles before cooking it… I was ALSO cooking for family members we rarely see, and I started to fret because I had spent so much energy on figuring out the vegetarian entree that I wasn’t ready to prepare anything a person would expect on a “normal” Thanksgiving table, but I really needed to limit the stuff we were taking along. My (very wise) husband put me on the phone with our family members, who immediately put my mind at ease, they were completely fine with the plans I had made, and were only interested in the visit. AMAZING the feeling of relief I had, after that phone call.

If you’re fretting about anything at all, please make that call for yourself. It’s worth it.

Do what you can, and don’t beat yourself up about asking for help or doing a little “less.” I promise, you’re still doing PLENTY.

[Ski]

in reply to: Combination Therapy T3/T4 #1181646

Hi MiTh,

I don’t have personal experience with adding T3 to T4 therapy, but I’ve heard a lot about it. As for when to take it, whether to take it with T4, and when to take it in the second half of your day, those questions are best asked of your prescribing physician or your pharmacist, both should be able to answer your questions the best way possible (they should know about the experiences of other patients, and should be able to share the pros and cons of your options).

As far as using combination therapy at all, that can be very individual. Some people have a real deficiency in converting T4 to T3, and those people need to have some supplementation. Others can experience a period of improvement, followed by a new period of hyperthyroid symptoms. Only time will tell where you fall in that spectrum.

Keep in mind that T3 levels are volatile, changing rapidly and depending upon what our needs are, so discuss that with your doctor. The two of you can figure out some way to get the right kind of lab results (enough samples, for instance, to determine a chronic pattern) so you’ll feel confident you’re doing what you need to do.

I hope this goes well for you, please do check in as you go through the process!

[Author]

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