[Ski]

in reply to: I chose RAI Treatment #1061706

When we stop taking beta blockers, it can trigger a brief "rubberband" effect, bringing back the symptoms it was initially meant to correct. It’s usually short lived, as long as everything else is fine (in other words, as long as you don’t have another underlying condition that would require taking beta blockers, or your thyroid hormone levels are still a little out of whack for you). That’s why they do recommend weaning ~ perhaps you need to wean more slowly (half a pill less each day, something like that), but discuss with your doctor. If it’s transient and not too severe, they might recommend continuing along the path you’ve been on, with some instructions about when to worry, specifics on what to look for that would cause concern.

[Ski]

in reply to: We’ll see update 5/24 Thyroid concern… #1061889

The antibodies are a constant, once the body has developed them ~ think of it in terms of "normal" antibodies. Once you’ve got antibodies to chicken pox, they stay with you, and if you are exposed to chicken pox, they attack and destroy the disease cells. They don’t go away after you’ve fought off chicken pox one time, they remain in some number so they can replicate and do their job if you need them.

So the antibody levels may rise and fall, but they will always be with you. If they’ve been successful affecting your thyroid, then your hormone levels will change. Once you’ve had RAI or TT, the antibodies still exist in the bloodstream, they just no longer have a target.

I have heard something, vaguely recalling, about a skin "look" that can point to autoimmune disease, but I don’t know details. It’d be interesting to hear more about that ~ anyone else heard this from their doctor?

[Ski]

in reply to: Meds and problems #1061717

Hi Jenn,

There are a few things you may want to consider. First, once we’ve had the Graves’ diagnosis, we tend to believe that everything we’re feeling is related to our thyroid and/or Graves’, but the fact is that your symptoms may be caused by something else. Our doctors get a kind of a "pass" when we look only at our thyroid levels for hints about our symptoms, and when they proclaim them to be "normal," they pat us on the head and we leave the office. The truth is that you are not feeling well, and your doctor is supposed to help you figure out why, and help you resolve the situation, so if your thyroid hormone levels are normal, the next question should be "then what else can we test?" Point out that you are NOT well, and you will not be leaving until you have a plan of action.

Second, remember that replacement thyroid hormone is not a medication, per se. It’s chemically identical to the thyroid hormone your thyroid WOULD be putting out, if it still worked, so it’s not something foreign to your body, it’s something essential to your body, and the trick is getting just enough of it in your system. There is no debate as to whether you need it or not. A person without thyroid hormone will die, eventually. Not rapidly, certainly, but it would happen if you no longer had thyroid hormone in your system. It is literally the fuel for every cell in your body.

Finally, being within the normal range is nice, but there is one point for YOU to feel well, and that’s what you need to know. I find it odd that your doctor would tell you that your levels were normal before, and normal now, but somehow now they’re "better" than they were before. Does the doctor have a preference for a certain smaller range inside the larger normal range? I’m not sure that’s appropriate. Each of us has a different set point within the normal range, which is precisely why it is so large, but it doesn’t mean that each of us will feel well anywhere along the range, we need OUR spot. Keeping track of symptoms daily may help you to have this discussion with your doctor, so they can see all of your symptoms and their severity,and how they affect you all the time.

I hope some of this helps! I’m sure you’ll get some more cyber hugs and good advice. ” title=”Very Happy” />

[Ski]

in reply to: FOUR WEEKS POST TOTAL THYROIDECTOMY HELP !!!!!!!!! #1061720

I’m not sure that everything you’ve experienced is typical, but a majority of the things you mention are definitely possible soon after surgery (and four weeks is still within the typical six-week window after any type of surgery), so I think you can look forward to resolution of all of these issues over time. When is your next follow up with the surgeon?

[Ski]

in reply to: Grave’s rage #1061725

The rage doesn’t always come only with hyperthyroid levels, though it can be worse at those times. It’s possible that your levels are normal, but that you haven’t had time enough to completely heal from the hyperthyroidism ~ your body cannot even begin to heal until your levels are normal, so that day is not the "all better" day, it’s the day that you can start to really feel better each and every day UNTIL you are all better, which can take time, more time than anyone wants (guaranteed ~ been there, done that, got the t-shirt).

One of the things I found helpful was to realize that there was some irrationality to my rage, which allowed me to NOT react every time I felt it. Jake’s reaction was always my favorite ~ tell everyone you love that this is a symptom, not our "new reality." Then, when the rage hits, and you find yourself screaming out of control (yes, it has happened to all of us), you can substitute words like "I LOVE YOU! I DON’T KNOW WHY I’M DOING THIS!" In Jake’s case, it broke the tension and everyone ended up having a good laugh, rather than emotional scars. Pretty nice outcome.

There’s a chance that anti-anxiety meds would be helpful for you, but I can’t speak directly to that, because I never used them. You may find it helpful to take extra care with yourself just now, if you take my meaning. Do what you love, don’t do what you hate, say no sometimes and learn to protect your sanity, in whatever way you prefer. That may help keep your emotions in check as well.

[Ski]

in reply to: Total thyroidectomy #1061741

Hello, and welcome!

Sorry you need to join the club, but we’re glad you’re here.

First things first ~ after surgery, you really shouldn’t be hypo for much time at all, since the "end date" of your thyroid function is very clear, and you can start replacement hormone (in order to let it start building up) before your blood tests read officially hypothyroid. Adjusting afterward is a little time consuming, but you should be starting at a good point (in other words, you won’t get to zero and have to climb up from there).

As for the Armour discussion ~ just for general information (for others, because obviously you already know), Armour contains a bit of T3 along with T4 thyroid hormone. Most of us take T4 only, which is the inactive form of thyroid hormone circulating in our bloodstream. As our body needs thyroid hormone to "fuel" something, we convert T4 into T3 and use it. (Isn’t our body smart?) ” title=”Very Happy” />

For MOST thyroid hormone patients, T4 is sufficient replacement. For a very small population, a bit of T3 can help. For a lot of patients who try T3, it is too much and ultimately leads to hyper symptoms. Those patient histories (we’ve been told at our conferences) start with a positive result (at least the patient feels a bit better), and a few months down the road end up with rapid heart rates and anxiety, etc. etc. When T3 is removed, things resolve.

T3 has a very short life in the bloodstream, and for that reason a patient who is taking T3 either needs to have a time-release version, or they need to take it multiple times throughout the day, in order to really see the benefit from it. Otherwise it’s just like a firework ~ poof and then it’s gone ~ so it wouldn’t provide any lasting results.

For the most part, a doctor prefers to go the route of T4 only to start with, and evaluate the process along the way. If the symptoms warrant a bit of T3 added, they’ll explore that ~ which will also involve reducing the T4 in order to balance things carefully. Remember that thyroid hormone replacement must be taken in a very specific way (on an empty stomach, nothing to eat for 45-60 minutes afterward, no mineral supplements within 4 hours), and if you take it several times a day, all of that gets VERY complicated.

All of this being said ~ try to remember that you WILL get well. There is an end to this madness, and you’re heading in the right direction. Nothing about any of our potential treatments is as dangerous as remaining hyper.

[Ski]

in reply to: Bizare vision symptoms….. #1061762

As to the question about the effectiveness of RAI: conventional wisdom these days is to aim for an ablative dose (total destruction of the gland), then positive outcomes are in the majority by far.

[Ski]

in reply to: Latest release of our book "Graves’ Disease In Our Own Words #1061750

Yay Jake, great job hangin’ in there! ” title=”Very Happy” />

I’m gettin’ one for my iPad, la la la la

[Ski]

in reply to: lost sex drive #1061782

It’d be good to go speak with your doctor and ask them to look into this ~ as I said, it can have implications with your circulatory system, which is something you really want to know about.

It’s also very possible that, though your thyroid hormone levels read "normal," they are not normal for YOU, and you need to adjust something to move around within the (gigantic) normal range, and find your normal POINT, whatever that takes (adding thyroid hormone or taking a little bit of ATD). Believe me, the difference between nearly normal and really normal is enormous, when you’re on the wrong side. You’d be absolutely amazed how different you can feel with a tiny movement in thyroid hormone levels, especially after you’ve been at the right level for a long time. It’s night and day, I’m not kidding. It may take a while, and some energy and effort, but think about it: is it worth a year’s effort in order to feel well for every day thereafter? The alternative is feeling unwell now and always. [And it doesn’t have to take a year, either ~ I’m just picking a large window of time to make my point.]

Just curious ~ what were you taking between your RAI in April 2009 and the point when you say you stopped taking medications, in June 2010?

[Ski]

in reply to: Parathyroid help… #1061752

We learn a little about the parathyroid, since it’s attached to the thyroid, and there can be issues after TT related to the parathyroid glands. There are four of them, they are kind of "parasitically" attached to the thyroid gland at the four "wingtips." They help to control the calcium in our bloodstream, though I’m not exactly certain of the mechanism by which they do that. When a total thyroidectomy is performed, the doctor will usually take 2 or more of the parathyroids and "stick" them somewhere else in the area, where they will perform just fine, typically. The surgeon who spoke at our last conference mentioned that while we have four of them, a person can be healthy with only one that functions. And there you have the total depth of information regarding the parathyroid in my mind-library. ” title=”Very Happy” />

Let us know how this works out for you & your family, it’s always good to have more information!

[Ski]

in reply to: Bizare vision symptoms….. #1061756

Just one more quick comment ~ if you are experiencing a retinal tear, I’m not implying that’s related to TED. I’ve never heard of those being connected. I do recall that my mother had a retinal tear and it was very frightening, needing immediate treatment.

[Ski]

in reply to: Bizare vision symptoms….. #1061755

Your vision symptoms don’t sound like classic TED symptoms, but some are similar. Are you seeing an ophthalmologist for these symptoms? The reason I ask is that they are the best doctors to diagnose/treat TED ~ optometrists and opticians are not the right doctors to see, as they don’t have the education necessary to successfully manage TED. The flashes in your vision are of concern because they can signal a retinal tear, and that would be something you need to treat immediately. Please see an ophthalmologist (or neuro-ophthalmologist, even better) and get an evaluation as soon as possible.

[Ski]

in reply to: lost sex drive #1061779

I know that thyroid imbalance in either direction can cause this, but after two years with Graves’, if your thyroid hormone levels have been correctly stabilized, then it shouldn’t be happening due to Graves’. So there are two things to consider — is this from a thyroid hormone imbalance? If you suspect that, you will need to get blood tests and see a doctor, sorry about that. There’s just no other way to be sure. It is possible also that your levels are in the normal range, but are not normal for you (those ranges are enormous), in which case you would still be suffering "imbalance," even though your levels look to be "normal." For this, you need a doctor who is willing to work with you, and for their sake and yours, some empirical data. That means keeping a symptom journal over time, so that the doctor can see your symptoms and their severity on a daily basis, which can help convince the doctor to move your medication or thyroid hormone supplement dose in order to find better health. You should include all the bothersome symptoms you may be feeling — excessive fatigue, skin dry or oily, feeling cold/hot when that doesn’t match the weather, things like that. Look to lists of symptoms from thyroid imbalance (hypo or hyper) and see if you are feeling many of them regularly. Some occur in both conditions, so try not to "pick" one or another imbalance, just choose the symptoms you’re feeling, and keep track of how they affect you during the day. I would think you’d be well prepared to speak with your doctor after about a month — try to walk in with your symptoms only (not an opinion of what that means), and have a discussion with the doctor. It really does help. It’s worth it for longterm health.

If you are convinced that your thyroid hormone levels are fine right now, then I would seek help from a general practitioner in order to point you in the right direction to resolve this. You may not think it’s much of an issue — we know it won’t kill us to have no sex drive — but in fact it can point to a lot of different issues (like heart conditions), so it’s always best to share this kind of thing with your doctor and see what they can find out about its root cause.

Sorry it points you in the direction of a physician, but the fact is that, if you have no desire, nothing except solving the underlying issue is going to make you feel that desire.

[Ski]

in reply to: Diagnosed-LOW TSH, normal T3 T4 & TPOAb- advice please #1061808

The antibody levels can rise and fall for no reason anyone understands clearly, so a negative antibody test isn’t necessarily conclusive. RAIU is conclusive for Graves’ Disease, because it confirms the distribution of iodine in the thyroid gland. Typical patterns are very different from GD patterns, so it’s usually easy to tell if it’s Graves’ you’re dealing with. If you have GD, the uptake is all over the gland and a higher than normal percentage of iodine taken into the thyroid. If not, the percentage of uptake is lower, and the pattern is not so much "everywhere." You’ve already ruled out nodules, I think, but if you have a nodule, that will either appear as a small area of very high uptake – that’s a "hot" nodule – or an area without any uptake – that’s a "cold" nodule. You can get a great deal of good information from the uptake/scan.

[Ski]

in reply to: Officially Hypo post RAI #1061814

Yay!! ” title=”Very Happy” /> One more step along the road, another step closer to health ~ relieving the hyper symptoms takes away so much anxiety and difficulty, I’m not surprised that you weren’t feeling "awful." One caveat: some of that hypo feeling may catch up with you now, even though you’ve started on replacement hormone. It’ll resolve pretty quickly. Just follow your doctor’s instructions and you’ll take even more steps toward health.

Keep on being kind to yourself, because you’re not done yet ~ what a great lesson to learn, to accept help and love and support from everyone around you, and to take off that SuperWoman cape ~ such a relief!!

So glad to see happy stories, thank you!! ” title=”Very Happy” />

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