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in reply to: Controversy over T4 vs. a T3 / T4 combo #1171975
Hi, I forgot to post this link.
http://www.medscape.com/viewarticle/722086_7
shirleyin reply to: Controversy over T4 vs. a T3 / T4 combo #1171974Hi Beach,
Fair warning. I might reverse T3 and T4 when I write and not notice it!
What a well written post!
Yes, I have had experience with the combo of T3 and T4. The results sounded marvelous to me (from a few anecdotal stories I heard and read.)
My endo said that his experience with his patients is that if the person felt strongly about trying it, he was willing to do it. He added that having Graves’ was such a stressful disease in all aspects, that the combination of patient desire, plus no evidence based reason that it was really harmful, that he thought it valuable that the patient “own” their experience, come to their own conclusions. He also said that he had 20+ years of his own patient population, and that only one person continued on the combination drug.
He said in many cases, there was a mild placebo effect, which patients usually acknowledged was probably the case. Simply because they were making a change, and wanted it to work.The rest of them told him that they could not see any difference after 5 or 6 months. I am in that category, but it did not take that long. I was all excited about taking the combo, and was very happy, full of more energy than I usually had–for about a month. Then I felt no difference at all. So it was I who initiated stopping the combination, and going back to Synthroid only.
(Since I mentioned the placebo effect, there are good, evidenced based studies about that particular phenomenon. Especially with pain meds.)
His experience in his practice was similar to my experience. His caveat was that because of the bioavailability and metabolism of T3, it had to be taken twice a day, approximately 12 hours apart, for otherwise, there was a rush of T4, that dissipated rapidly. The clinical result was a feeling of mild euphoria that it was “working” followed by a crash, feeling more tired and sluggish. He said over time, the patient compliance was poor with this regimen, since it did not seem to make much difference, why do it?
Synthroid seems the best for me, but the insurance costs are increasing a lot, for the generic is available. I switched to the generic, but it seemed that I felt better on Synthroid. AND, I personally think that my own experience with this, may be a placebo effect!
In summary, I appreciate your dilemma. This will be an interesting talk with your endo next Wednesday. And you already know that there are different opinions on this issue. When you talk to your endo, maybe you can make a plan to give one of the choices a chance, see how you feel, with the symptoms that are troubling. I guess I would give Synthroid a good run first, or begin with the generic, which many people take, and see how it goes. Then, after you have gathered information which you don’t have now, you can decide to stay as you are, or try another option.
In my own experience, I already have significant osteoporosis and osteopenia, plus a cardiac issue from one of my chemo drugs for breast cancer. So since I did not notice any difference after my excitement of beginning the combo, I am back to Synthroid.
Shirley
in reply to: stopping meds – what to expect? #1171944Hi, you will probably hear from Kimberly when she sees your post. That will be helpful to hear her experience. I think she has been on ATD’s for several years.
shirleyin reply to: ACK! Could we get a diagnosis please??!!!!! #1171880Thank you, Bobbi. I just read one article that clearly states there is no consensus on much of anything with post partum thyroid disease.
Alexis, I am enclosing it for you, but it is also 10 years old.
It does not really help you with your dilemma. After reading it, I think I understood that ATD’s are not used (not that you are a candidate for them)
for thyroiditis, only beta blockers.
I can see why there is confusion and indecision from the docs.
Gosh.
Shirley
http://jcem.endojournals.org/content/87/9/4042.fullin reply to: HELP: Could it be a misktake???!!!….. #1171926Hi Jennifer, as the day passed, I began to think you should try to call on Monday, to express your concern about this. Knowing how crazy endo’s office can be, and the number of people to go through to get an answer, I am not sure if it will make a lot of difference, but it is worth a try. As Kimberly said, trying to call is a good idea. I agree with your concern over this matter.
I am unaware of the controversy about the upper limit of the TSH range. Kimberly, are you referring to something different than the fact that different labs use different calibrations on their instruments, and the ranges may differ for that reason?
Jennifer, it is definitely the right thing to do to have the the complete thyroid panel of TSH, T3 and T4.
Shirleyin reply to: HELP: Could it be a misktake???!!!….. #1171924A few thoughts. I’m not a doctor, either. I find your experience a bit of a puzzle, too. One comment. Each lab has a different “range” of normal. So numbers mean less when the range is not listed along with the result. For example, the TSH rang for the lab where my blood goes, is (.4-4) I am not sure your TSH is very high at all. It might be the high range of normal range for your lab, or slightly above it. So from now on, if you post any labs, state the range of your lab along with the results. *I suggest you do what is necessary to get copies of all your labs and all the notes from the visits to your doctors.
Here are a few thoughts (and questions) that tumble up in my mind regarding your post. They really are all over the map, too (thoughts.) Chances are, by the end of the day, you will receive a very good post by Bobbi or Kimberly about labs. I think Bobbi wrote a recent one, explaining them. You might try typing T3, T4 in the search engine.
1. Down the road, later on, when you are well again, usually, when taking Synthroid, much later on in your treatment, labs are drawn, a T3 and T4 are drawn with the TSH. These labs tell different stories, all of them vital to have you end up with the right amount of med for you. And at that time, the labs should be drawn 2-3 MONTHS apart, to accurately reflect correct information of how you are metabolizing the hormone. But right now, you began with HYPER, and it is then that labs are drawn pretty frequently, as yours have been. That is what I would expect.But right now, you have a new diagnosis of Graves’, and your docs tell you that your TSH is low, which fits with this. So goal is to decreased amount of hormone racing around your body. I have no idea what “mild” Graves’ might mean. Not sure what your symptoms were in Feb. Were they the usual cookbook list of hyper symptoms? Tremor, weight loss, anxiety, hunger, fast hear rate, on and on It does seem that he started you on a very low dose of methimazole, to see how you felt, and what you subsequent labs would be. It seems it is a very conservative low dose. Maybe he want to be sure he did not plunge you into a very hyPO state. BUT as you said, you do have some hyPO symptoms right now. Alexis had great suggestions, I’d follow through with a list of questions
I do feel that my post is not that helpful to you,for you seem to have quite a good understanding about the dx, why you are taking the med, what it should be doing, etc. And, I am as perplexed as you are with the increase of the dose (if the endo knew your symptoms!!!) Did he?
I am so glad you have an appointment next Wednesday. Glad it is as soon as it is, but right now, the way you feel, I am sure it feels very far away! In summary, your reasonings and you questions sure make sense to me, and I am sorry you feel terrible and hypo. Being hypo is its’ own little hell, just like hyper, but different. It is depressing to feel so tired and have those other symptoms.
I guess the only other thought I would have that needs to be considered, is if there is anything else going on that is not Graves’. But it is hard to think of that as a viable option right now given the information that you have.
Know that in a period of time, you will be yourself again. But, like all of us, you want it to happen yesterday!
Shirley
Shirleyin reply to: Ovarian Cysts / Thyroid Imbalance Link? #1171904Agree with Bobbi re her thoughtful and informative post.
But here is another perspective on “our” ovaries. Ovarian cancer is one of the most sneaky, no symptoms, diagnosis very late, usually Stage IV with terrible prognosis. I had an elective bilateral oophorectomy, and was thrilled to do it. It eliminates the possibility of having ovarian cancer. I was in my early 50’s.
Just one girl’s thought.
Shirleyin reply to: ACK! Could we get a diagnosis please??!!!!! #1171877My first thought is that the nuclear med docs are better at reading the scan than the endocrinologists. But really, I have no idea.
I realize that your%’s are slightly above the ranges, not wildly above.
This is really tough. I can say that I had what was called then,
“post partum thyrotoicosis, and also Graves’ disease.
Knowing how I felt, there is no way that I would have toughed it out to see if it were thyroiditis, but again, I don’t know anything about the science. The explanation I received was that the incidence of Graves’ increased a little bit in women after pregnancy, but that did really change the treatment. They did not consider thyroiditis.
And, as I said in another post, I elected to have surgery asap, and I did continue to nurse.
Gosh, this is a really conundrum for you. I am so sorry.
I am not sure what the TSH, T3, T4 and TSI would show, for it is my understanding that they are equally elevated with both conditions. but tyou can ask the doc that question.
Well, you have one more business day, so I would hope you get your lab results today. When will your own endo be back?
I see your dilemma, for without ATD’s you are in for a hyper ride of unknown length, and that is definitely and absolutely not a good idea for your own health.
I guess, based on that, plus you are without a med to prevent you from being hyper, I see why you think surgery is the right thing for you in every respect, including breast feeding, plus your health. Basically, if you waited and waited, it is a decision to be hyperthyroid for an unknown length of time, and taking a gamble that has pretty large implications.
Do write soon
Shirleyin reply to: Had the Scan Done #1171861I agree. Limbo is hell. I like to know stuff, too. Now you can move along, do what needs to be done, and write back to this forum and help other people!
Shirleyin reply to: Caldwell-Luc Method for Orbital Decompression #1171833It is a very old procedure for sinus problems, sinusitus. An ENT (ear nose throat are usually the docs who do it.) There is a reference in this site that states a decompression is one of the indications for it.
When I had my OD, the eye surgeon did the lateral and superior wall, and the ENT doc did the medial wall. The procedures for OD vary, depending on the part of the country you live, and even more, where the doctors trained.in reply to: May be a strange question #1171804I understand. Hope baby can eat a little bit early! Best wishes to you.
Shirleyin reply to: Synthroid & Low Blood Sugar? #1171830well, the first thing I think of is your diet, and if you have been so busy you have not been eating enough/
The second thing I think of is for you to take your glucose equipment to work, and check a blood sugar if you are feeling like that.
The third thing I think of, is the timing of when you did you chem stick, and when you had last eaten.
And, I presume you very well informed about Type 2 diabetes, and that you need to be pretty structured about when you take your oral meds, when you eat, etc. etc.
The other thing that occurs to me is that it is I wonder if you have hyPER symptoms? I realize that you were hypo a short time ago.
But, when the body is in overdrive with hyPER, blood sugars can be harder to control, for everything is on warp speed in your body.
Just my initial thoughts. I do think it is kinda early for labs, but if you can do it, it might give you more information.
Shirleyin reply to: May be a strange question #1171801The name of the cold thing is:
Cryocuff. They are wonderful. I have always given them to every shoulder, elbow, knee and ankle patient. i am guessing that you will get one. When your preop nurse admits, you, ask if it is ordered post op. Tell her to check. If not, request one.
Shirley -
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