[Bobbi]

#1064438

The troublesome aspect of your post is that you say you are worse than when you were diagnosed. This is NOT good. So, for questions, you need to find out why. What you should be expecting, especially after a year of treatment, is that you would be feeling better, not worse; stronger, not weaker. So, you need to ask your doctor why the treatment is not doing what you should expect, and whether another treatment option would help you more. We get well again, provided that we get diagnosed before the hyperthyroidism does too much damage. Letting it drag out is not good for your long term health options.

[odapoda]

#1064439

They all know, they just don’t know why..The lab tests show no set back or anything.
Here, they won’t do anything but medication for a year- two years, then surgery when young. That’s the only options I have, and they are reluctant about surgery. But I will keep that in mind, and ask. Also, Im getting a second opinion, just got the test sheet

[odapoda]

#1018389

First of all- Hi!

So, my one year check-up is getting close, and since I know so little, I thought you could help. Are there any questions I really should ask? I’m always too emberassed, and yell at myself after for not asking. I still know too little, so really, any advice helps ” title=”Wink” />
The last time we had the "surgery talk", and my primary doctor is aggravated over the fact that they haven’t already just pulled it out (haha), since I’m worse than I was before my diagnosis.

Also, I’ve been, unfortunatly, unable to work and study, which is annoying enough. So I really need to fill up the spare time I have. Starting on a private school internet program now (hopefully), but I have to have something to fill the time I have where I’m just too ill, or everyone else is working/studying.
Any suggestions? ” title=”Smile” />

Thank you, Oda

[Harpy]

#1064440

Just had a look at your previous posts and you haven’t mentioned anywhere if your T3 & T4 are in normal range.
It takes some adjustment of medication in the first 12 months to get the dose right, particularly in the first 3 months.
You should have been tested after 4 weeks on meds, then maybe after another 6-8 weeks, then maybe every 3-6 months if your levels are behaving. If they are not then more frequent testing may be required to get the dose right.
If you have not been tested since starting the meds almost 12 months ago, then who knows where your levels are, the dose may be too low to get your thyroid hormones under control and hence continuing symptoms and getting worse because the longer you are in this state the more nutrient deficiencies will appear in your body.
I think in one of your previous posts you may have low iron levels, have they improved? Iron supplements are best absorbed with food (meat), and iron from vegatable sources also goes better with meat and always include some vitamin C with your iron intake as it improves absorption, so have a glass of orange juice with your iron meals.
Your healing process will be much better if you are informed about the disease, treatments available and understanding where your body is now. This will help you make informed decisions.
Do you have a record of what your resting heart rate is, is it going up, down or is remaining steady?
What about your body temp?
Didn’t pick up your sex, if female, are your cycles regular, long or short, do you suffer excessive PMS etc.
All these things are indicators you can use to track your progress in addition to regular blood tests.

[odapoda]

#1064441

Thanks for the replies, first of all

I can’t post the results since I’ve never seen them. After each test, which is every six weeks, I just get to hear if they’re normal or not. Right now all of them are normal, or close to normal, which is why I don’t really get why I still feel so crappy..
But I haven’t checked if the dose is correct, only my endo can check that, and he’s so busy that he hasn’t checked since we upped my dose this may..
My iron levels have improved alot, after meds and eating alot of food with iron, so my nails are finally strong again. I just have to keep the diet, and they won’t fall back down again.
My heart rate is up and down, all the time. I tried convincing them that I should go back on the beta-blockers, since the tremor is back too, but no such luck.. They wont up any medication because of my weight, I’m currently underweight..
Body temp is just above normal, but it’s been that way since I was young, so that’s normal for me.
I’m on the pill now for intense pains, and to make that time more stable, before it went between every month and every three months..

[Harpy]

#1064442

Sorry for all the questions, but we can only go on the information you provide and relate it to similar experiences that we have had or read about and relay what seemed to work in those cases.
It sounds like you still have significant Hyper symptoms and it seems odd that if you are underweight that they will not increase your dose, in most cases it is the hyperthyroid condition that causes the weight loss, unless there is another factor at play.
You say your dose increased in may, have the symptoms got worse since then or have they stayed much the same?
Beta blockers should only be required at the start and are not good to use long term if you don’t have to. The ATD’s(methamazole or PTU) block the thyroids production of T3 & T4, but when you are initially diagnosed there is a lot of these in your blood and the Beta blockers are only used to block cellular uptake of the excess T3 & T4 until it is flushed out of your system, usually about 4-6 weeks, then you stay on ATD’s only.
Which medication are you on?
Your body will definately be out of balance and going on the pill to get some regularity there is probably ok as a short term measure, others may have more to add to that.
I don’t know what the protocols are in other countries, but here in Australia my partner requests copies of all her results and has a complete history from the time she was diagnosed, which helps if you want to engage a secondary practitioner like my partner has, she has her Endo for the Thyroid meds as well as a Naturopath who has put together a nutritional program to try get the bodies nutrition back up and correct some of the deficiencies.
The three factors that contribute to the severity of the condition are Nutritional imbalances/deficiencies, Stress & Environmental Toxins. By working on these improving these three factors you can assist the healing process.
Next time you get tested, ask for a copy of your results so you can gain an understanding of what your situation is.
The test results should have free T3 (fT3), free T4(ft4) and TSH levels as well as there respective normal ranges, in addition there should also be a full set of bloods that test a variety of blood factors and their respective ranges.

[cynthia]

#1064443

In my experance the blood test can be decieving if you are up and down if you don’t test when feeling really bad it may show high normal that is what happened to me for a long time when I felt really bad too sick to go to the dr.s when I got a little better test didn’t show hyper it was years before I got the answer just had surgery on monday and feel better the day after than when I went into the hospital think meth… made me feel bad not sure but thank god I am on the mend….. I have been participating on the board for 3 monthes and was very suprized how good I felt after the surgery I hurt yes but that is more manageable than the shakes and fatique I felt before.. I requested my throid after surgery to stomp on ha ha ( am rn and have weird sence of humer) my surgion told me he did it for me and spit on it toooo…. ha ha that is how much I hate this disease please don’t heatate doing something because it can get a lot worse I was in the bed for most of the time for 3 monthes and I am a type a personality so it killed me to be so depend… god spead and good luck

[Bobbi]

#1064444

Well, for starters, odapoda, find out if you can have copies of your blood tests. In the US, we are allowed that; I don’t know what the protocol is where you live. But it can definitely help you better understand what is going on if you can SEE the results instead of just hearing "normal." That way you can see progress. If things are not quite normal, you will be able to see how much they are off and in which direction (hyper or hypo).

If you are still hovering in the hyper range near normal, or even at a normal range borderline hyper, that could explain why you are still feeling lousy. Even minor levels of hyperthyroid cause us to lose bone and muscle. Slower maybe than if we’re raging hyper, but hyper is bad no matter how minor it is.

Another thing that can be helpful, especially when you are feeling bad, is to take a friend or family member with you to the doctor’s appointment. I have sat in with a friend, who had a list of questions, and I wrote down everything the doctor said. When I typed up the list of responses, and gave it to her, she had forgotten some of the instructions and points. We DO forget. We are stressed; we are feeling lousy; whatever — we can miss points.

Even if you don’t do that, write out your questions, and even hand the doctor the list to make sure that all of your concerns are covered.

[Author]

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