I really wanted to post on the ask the doctor forum but it said it exceeded the daily questions but I need help so badly. So last week I had my yearly thyroid full body scan and everything came back clear--thankfully. So now I can start on my medications...I should be happy..but I'm actually not. Now, before I stopped my medication in prep for the body scan, from early January to the day I stopped it, I was having extreme problems with my body...I was feeling anxious, sweaty palms, just feeling hot all over, heart palps, irritable, burning sensations, etc. I was in and out every clinic and ER & every doctor kept telling me it could be my thyroid and I should lower my meds & as soon as I stopped my meds...all those symptoms disappeared..and than I just went hypo. I've been on 200 mcg since last March and I never had any problems with it, before leaving the US my TSH level was 0.04 and than in January it was 0.004!! which I had no idea that it was dangerously high. The doctor didn't even tell me.
So on Friday, I started my 200 mcg again and I started to feel anxious and I felt the burning slightly. Something is just not right!! I went to my "doctor" today to discuss maybe we can try 175 because I think that my dose is too high and we had an argument in his office..he's telling me that I should be on 200 for the cancer suppression and believe me, I know but I'm trying to tell him that I know my body and something doesn't feel right. I just want to try 175 for a couple of months to see how I do on it. I'm just upset because he kept saying that my TSH level of 0.004 is HYPO and a couple of people have been telling me that that's HYPER and I feel like he's getting the numbers confused. I faxed all my lab results back to My endocrinologist back in the US and he NEVER got back to me so I feel all alone and I feel like I have to figure out all this on my own. The doctor I've been seeing here finally relented to 175 but they don't have Synthroid here but something called Euthyrox which I never heard of nor tried....
Of course I don't want my cancer to come back but is dropping from 200 to 175 really going to allow a relapse? The cancer is gone but the medication is ruining my life. I just want to feel normal again....or somewhat normal.
I have never heard of Synthroid as a cancer prevention. Let's start with the basics. You've had thyroid cancer. The thyroid removed. Any RAI treatment after?
You have some obvious hyper symptoms and a very low TSH. First of all, TSH is a pituitary hormone, not a thyroid hormone. Strike one against the doc for treating your TSH levels. The doc should be treating your FreeT3 and FreeT4 levels. For many of us, our frees need to be mid-range or top 1/3. Also, a good doc will treat your symptoms as well, and since you have hyperthyroid symptoms, that would be a good clue that you need lower Synthroid. So as he's trying to prevent thyroid cancer, he'll just give you a heart attack instead?
Is this a doctor on a military base? Hubby is retired military and I had two worthless endos at my base hospital, but I live in the states, so I went to my patient advocate and got a referral to go off base. I don't know if this is the same for overseas, but you should definitely look into this.
Next, 200 mcg of Synthroid is a bit high for some. You were right to want a lower dose.
Also, shame on the doc for not trying an FT3 drug. Synthroid is a T4 drug, but for many of us, we also need a T3 drug like Cytomel added to our Synthroid. For this, the doc would need to lower your Synthroid even more, but it may not happen, so just keep that in mind for when you return to the states.
When you were diagnosed with thyroid cancer, did the docs also run antibody tests to determine if you have Hashimoto's disease? Hashi can make thyroids big and messy, and sometimes this leads to cancer if untreated.
The tests are TGab and TPOab. It would be important to know this, as Hashi is an auto-immune disorder, and removing the thyroid may not remove all symptoms. Also, Hashi and any thyroid issues can run in families. My mom had suspected thyroid cancer several years ago. They removed the thyroid lobe, and it turned out to be benign. Nobody told her she had Hashi. We actually found out after I was diagnosed in August. When I became seriously ill several years agi, it was difficult finding a diagnosis. If I had known about my mom's Hashimoto's, it would have been far easier to diagnose me.
Here is a good website where I found my new endo. Tricare will only cover 50% less a $300 deductible. Overseas docs are on this site as well.
Keep this information for when you go back to the states. My experience with the few military endos I've seen is that they also treat the TSH and not the frees.
Many people with Hashimoto's will have low vitamin D, iron and B12. Make sure these levels are treated and addressed.
Also, we Hashis tend to have adrenal fatigue. Ever heard of an adrenaline rush? Those adrenals are not designed to work full time, but after the thyroid poops out, the adrenals kick in full gear and they easily become exhausted. A 24 hour saliva test is the ONLY accurate measurement. Many endos do not know how to test for or treat adrenals. I have to go to my chiropractor for that.
yes, I was diagnosed with Papillary Thyroid cancer last January. I received the TT last year and had the RAI treatment that March. Just last week I had my thyroid body scan but nothing was abnormal so they decided not to give me any treatment. The doctor isn't on a military base, it's just a doctor in a hospital and I feel like he's not ..very good.
I did receive Cytomel but that was after my surgery until the full body scan than after the RAI they started me on the 200 Synthroid.
My doctor back at home or here never said anything about taking a T3 with a T4 and I do recall seeing the word Hashimoto's in my medical record but that was never really fully discussed with me...nor adrenal fatigue. I do have low Vitamin D, last time it was checked it was 37 on a 30-100 range.
I feel so confused now...with the mention of T3, adrenal fatigue.. the more I read about this the more my mind is spinning I don't know what's what anymore..Its so depressing I don't have a good doctor overseas and I'm only 21 I can't figure out all this stuff on my own. thanks for the website though, I will check it out.
It seems your immediate dilemma is getting back on your thyroid meds after the scan. 200 mcg is a high dose, and you've been off meds for quite a while in preparation for your scan. Since your body is now unused to having that much hormone in your bloodstream, you might have to start at a lower dose and build up once again to a therapeutic dose. I'd suggest asking your doctor if you could start at 100 mcg (or even less if you can't tolerate that) and staying there for a couple of weeks, then increasing in 25 mcg increments as tolerated.
Yes, you do want to keep your TSH suppressed for prevention of recurrence, but you can only do that to the extent that you feel well (not hyper). It doesn't do a lot of good to have "perfect" numbers for your disease if you are miserable.
Try re-introducing the levo more slowly, and that might just tide you over until you can get in touch with your regular doctor. Euthrox is just a European equivalent of Synthroid.
thank you for responding to my question ...I did think that the sudden intake of hormone might be a slight shock to my system..but the doctor I have here... I had to fight tooth and nail with him just to lower my dose from 200 to 175 so it would be hard to suggest 100 to him.. ah I don't know, this is just so discouraging.
It's tough to deal with an insensitive doctor...no question about that. However, could you approach him by saying that you agree that you need to get back to 175, and want to as soon as possible, but the 175 all at once is just too much for you to tolerate? You have to work up to it a little more slowly because it really makes you feel unwell.
I don't advocate self-medicating, but those 200s will split into two 100s. You could at least get a 100 and 150 (by quartering) to give yourself a couple of interim steps to the 175. Just a thought...
Are you abroad for a long time, or will you be able to see your local doctor in the near future?
Next month will be the last time I will be visiting that doctor because he is just no good for me. I have no idea when I'm going back to the US, but I made an appointment with an endocrinologist in July in an hospital that's affiliated with Johns Hopkins so I'm hoping and praying that this doctor will know what to do with me.
I still don't know if I should start with 100 and slowly work my way up or just start with 175 and see what happens. Either way, thank you for all of your suggestions I really appreciate it!
I agree with goolarra that you need to keep your TSH suppressed in order to prevent recurrence of the cancer, but 0.004, is not hypO by any means and certainly not "dangerously high".
I also agree that you should start back on the med gradually, not all at once. Halving or quartering the pills is one way to do it, if the doctor won't agree to just let you have smaller doses and work up. If you quarter the 200, you can go up 50 at a time.
Additionally, I would not recommend a T3 med, without having FT3 and FT4 tested because you don't even know if you need T3 med. T3 med, such as cytomel, is usually used in cases where the patient is not properly converting the T4 med into the usable T3 in the body. If you are going hyper on your T4 med, I certainly wouldn't think you'd need a T3 med at this point.
July is a long ways off and that's a long time to stay so miserable. I hope you can get something changed sooner than that.
well I'm no longer doing 200 but my dr agreed that I can try 175.
they don't carry a full 175 but a 150 and a 25 mcg
I did take the full 175 this morning.. I don't know what I feel..I still feel a little sick I dont know if it's the medicine or the fact that I'm still hypo.
so should I ...just take 50 ...?? and for how long should I take it before I work my way up to 100 than 150 and than 175?
the more I think I have all this figured out the more complicated it gets.
Well I see the endocrinologist May 11th, but that would be the last time I see him and than my next appointment would be in July with the new doctor.
It is a catch-22 in many respects. You're hypo, so you're not feeling well, but you most likely can't jump right back on 175 mcg with no interim steps and feel well, either. So, it's going to take some patience.
You could try starting at 100, or even half of a 175. If you can successfully take that for a couple of weeks with not side effects, then go up about 25 mcg (split, combine, you can also alternated doses over two or three days to get an average). See how that goes for a couple of weeks. It's all a matter of how you're feeling along the way. If you start feeling hyper, it's most likely because you're moving too fast and have to cut back to the previous dose and give your body a little longer to adjust.
Do you have your most recent lab results for thyroid tests with reference ranges?
well, this evening I started to feel the same sensation I was feeling before I stopped my medication in prep for the full body scan. I was having extreme burning sensations throughout my body, particularly my legs. So This evening, I started to feel slight burning patches throughout my body, and the more I thought the same thing happening all over again the worse it got. So I'm not sure if all of this is anxiety induced. But no doubt the pain was there.
I managed to phone my doctor back in the US, but unfortunately she couldn't do much for me, she figured that my dose was too high but told me that I need to stay on 175 for a while in order to get an accurate reading for the blood test. She said that I should alternate, take 150 one day and 175 another but said that I would really have to consult my doctor over here... she doesn't understand that this man is absolutely no help to me, not even realizing that my TSH level was an indication that my dose was way too high and I'm basically doing everything on my own. Which is extremely depressing. and I just feel like giving up.
Here are my lab results before I went off of my meds:
Well, if it's any comfort...been there, done that, got the T-shirt...doing it on your own, I mean. I had an idiot PCP who just didn't get it...just kept saying "need more thyroid". Anyway, I do know where you're coiming from...
First, the labs. Is that total T4 or free T4? If it doesn't say specifically "free" or FT4, then it's a total. The range looks like a total to me, but since you're in another country, it could be just expressed in different units. Your doctor should be testing free T3 also...it's the test that correlates best with symptoms and will usually tell you when you are overmedicated.
Your symptoms before the scan sound hyper (overmedicated), and your TSH, of course, is just about non-existent. Your doctor didn't do any more bloodwork before starting you back on meds?
Your U.S. doctor does have a point about staying at a consistent dose so that labs will accurately reflect the dose. You basically have to be on the same dose for 4-5 weeks before it reaches stable levels in your system, and you can see where you are. However, I doubt she's ever experienced what it feels like to be overmedicated or to ramp your dose up too fast...if she had, she wouldn't be so blase' about it.
Yes, it will "waste" a couple of weeks if you start out slower, but you will be working toward your goal of getting back to the 150-175, and you won't be feeling miserable in the process. My doctor started me too high, and I had to cut back and cut back, which I now figure cost me about four months. It took me almost a year to get to the dose that I've been at for over a year now (which is less than the dose the PCP originally started me on!).
Have you had any meds sensitivity in the past? Did you get to the 200 mcg dose by slowly increasing or was it a pretty rapid increase?
It's a matter of if you want to "tough it out" and see if the 175 or 175/150 settles down after a couple of weeks and your current symptoms go away or if that's just too miserable a way to go. It will be important, though, if you decide to not follow your doctors advice, to keep a journal of exactly what you took every day and what your symptoms were so that you can let him know what's been going on, and he can base any further adjustments on that or have you back in for testing sooner once your levels stabilize.
You do have to take the meds for the rest of your life (most of us do), but everything will get more stable and it will be easier to stay consistent. Stopping meds for the scan is traumatic, you're very hypo at the moment, but everything will improve as you get closer to your "ideal" dose. It also helps if your doctor is doing adequate testing every time you have labs...FT3, FT4 and TSH. Those are the minimum for basing meds adjustments on.
Anyway, whatever your decision, I hope you start feeling better soon. It's no fun to be far from home and not be well. Don't be discouraged...it'll work out. It just takes sooo much patience.
Sure you can.........a lot of us have "been there, done that".. Although I've not had cancer, etc, I've been through the "lousy doctor syndrome".
What goolarra said is correct -- you can split your pills to come up with all kinds of combinations. I think you said you have 150 mcg and 25 mcg, right? You can split the 150's in 1/2 to make 75's and the 25's in 1/2 to make 12.5. So if you decide to start at 100, you could do 1/2 of a 150 + a 25. Or if you think 100 might be too much, start with 1/2 of a 150 (75) and 1/2 of a 25 (12.5) for 88.5. Stay on each dosage for a week or two, then move it up slowly. It will take you longer to get optimal, but you might feel more comfortable along the way.
Anxiety can do strange things to us and since you are already hypo, the anxiety might be greater than it otherwise would be, but you are still the best judge of how you feel. The thing is: if you decide to start a lower dose, make sure you stick with it long enough for your body to get used to it before moving up. It might not be your optimal dosage, but if you change back and forth too often, you will end up having even more trouble than you are now.
Yes, you have to take this med for the rest of your life; and sure you can do it. If you were diagnosed with a heart issue, you'd take whatever med to help correct it; if you were diagnosed with diabetes, you'd take shots/pills to keep things right........you have a thyroid issue, so you take a daily pill or two.
It does take patience because it takes time for these meds to level out in your body so you can move on to the next step, but hang in there, you can do it.
It doesn't specify anything if its Free T4 or Total it just says Thyroxine and no, I was not given any additional blood test after my scan. Now that realize it, I should have suggested it to him. As for being sensitive to medication in the past, before my diagnosis last January I never had any medical problems except for the common cold so I'm new to all of this and yes, right after my RAI last March they put me directly on Synthroid 200 and I was fine but than all of a sudden my body went haywire.
I was off of my meds for almost two months because of the scan and I want to believe that the sudden intake of the medicine again is a shock to my system. So I'm seriously considering starting at a lower dosage, maybe 100 or 88.5. I had no idea you can physically break the pills in half though. If I do this, starting tomorrow, I really have to stick with it right? I can't keep going back and forth with my dosage.
I'm just nervous, not with how long it will take for my body to regulate itself back into normalcy but I keep hearing them say "High suppression... you need to be on the meds on a high dose for the cancer to stay at bay". So I've been off my medicine for two months and I won't be on a high dose for maybe two more months or so...I'm afraid the cancer will come back!
But at the same time, I don't think I can tough it off being 175 at the bat, I feel like hell times two. So I think I will start myself on a lower dose, and just work my way up every two weeks and I would really start keeping a journal also so I can show my doctor.
Okay, if it just says "Thyroxine", then it's total, which is considered an obsolete test, replaced by free T4 (free thyroxine). TT4 gives the total T4 in your blood, but much of that is chemically bound by protein and so unavailale to your cells. The "frees" tell what is actually available to your body. Your doctor is ordering an obsolete test, not ordering FT3, and, yes, he should have tested prior to restarting meds (in my opinion) so you'd know where you were starting from.
Our requirements for thyroid hormone change at times. Stress, diet, illness, weight gain/loss, just to name a few, can all affect our meds needs. Moving to a foreign country???
After being off meds for two months, the sudden reintroduction of 200 mcg is a major shock to your system. Half a 175 is 87.5, also. Oh, I've chopped, combined, alternated...it's amazing what you can come up with! When I first started seeing my endo, his nurse asked me how much levo I was taking. I said 69 mcg. She said she wasn't familiar with that dose (and gave me "the look")...half an 88 plus half a 50.
Yes, you have to be as consistent as you possibly can. If you flip-flop too much, it's impossible to figure out what's going on because none of this settles out in your system for so long. Just an aside about my own personal neurosis...when I split, I just split one at a time so that I take the two halves of the same pill consecuitively (for consistency). It's a bit of an oversimplification, but you almost have to average what you've taken for the past 5-6 weeks to get an accurate meds dosage.
You'll get back to your "high suppression" dose, and you don't have to be hyper to do it. As I said, starting too high and increasing too fast can actually slow the whole process down a lot. Slow and steady...
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