[Ski]

#1066902

Well! Where do I start? All good questions, and we understand the frustration as well!

Here’s the thing about thyroid hormone. Our body absorbs it through the large intestine, so it needs to GET that far, alone, in order to be sure our body absorbs it as efficiently as possible. That’s the issue with taking it on an empty stomach. In addition to that, there are certain substances that can change the way it is processed in our bloodstream, if that is taken in very close in time to the replacement hormone. STILL, consider this: if you take it the same way each day, eventually your dose will be adjusted accounting for whatever method you use. So perhaps having cereal in the morning (at least an hour after your replacement pill is taken) will mean that ultimately your dose is larger, but it doesn’t mean you absolutely CANNOT eat that way. Your dose may be less predictable by the doctor if you decide to operate like this, but if the end result is that your thyroid hormone levels are within the normal range, no one can really argue with that.

What some people do is to set a second alarm, earlier, and make that the time they take their pill. Then they go back to sleep and wake up at their normal time, fully allowed to eat and drink as they wish. That would solve just about everything, if you’re willing to do that.

As far as taking it at exactly the same time, a couple of hours’ difference won’t make much of a difference, so don’t worry about that. The interactions with other substances have more chance of disturbing your condition.

The first period of time after taking a new dose of replacement hormone (first 3 weeks or so), it’s very typical to feel "kinda up," "kinda down," with no real rhyme or reason. You should find that those feelings even out in weeks 4-6.

You usually need at least six weeks of a dose in order to evaluate how your body is reacting, so it’s not surprising that your doctor prescribed you replacement for such a long period of time. If you’re lucky, it may be working fine and you’ll stay there. If not, no harm done, he’ll write you a new prescription and you don’t have to refill the other. Remember that your body may still have some functioning thyroid tissue, which is continuing the process of destruction (the RAI takes up to six months to do all it can do), so any "x" and "y" calculation may have an "n" or "q" thrown into the mix, especially during this time.

Bottom line, you are WELL on your way to health. It’s still a bit of a waiting game, but you’re closer every minute. ” title=”Very Happy” />

Can’t tell ya about the kidney pain/having to pee all the time ~ definitely see your doctor if all that continues. Did you do a lot of drinking water, more than usual, when you had the RAI initially? I know that’s part of the instructions, and maybe you did that and then got used to it, which may have just changed your habits in general. Still, if there’s pain in your back that isn’t getting better, you should always check with the professionals.

Good luck on your replacement!! Ask any other questions that come up!

[hockey]

#1018758

Hi,

Ok – so I’ve been through RAI, and am now on the downside to hype – as I had thought/guessed, my #’s started falling at Christmas. The 10 days/2 weeks before Christmas were great! Seemed to have pretty good energy & mood & workout (hockey) was fantastic, best I can remember for years. Then, after Christmas, tiredness set in. I didn’t know if I was tired from hosting 3 days in a row (25/26/27) or if it was due to thyroid. Well, my blood test on the 28th said it was thyroid – my endo had asked the week prior how I was feeling & at that time, seemed to be ok, but obviously the tiredness was due to thyroid more so than Christmas stress etc. as he had considered giving me a Rx on the 22nd.

I ended up getting my Rx for Synthroid on Dec 30th & started taking it that night.

My questions are:
– why did the pharmacist say no milk products, supplements, iron within 1 hour of taking replacement & to take the synthroid 1 hour before eating when my endo said take it 1/2 hr before eating & did not mention anything re: milk?

– then, when I read the package of stuff enclosed with the prescription, the sheet says no calcuim or dairy products withing 4 hours of taking the supplement?

Why can’t there be any consistancy – I thought the inconsistencies would stop after all the conflciting info given re: post RAI isolation guidelines??

When they say to take it at the same time every day, how closely does that need to be? Can it be close in hours (ie. one night take meds at 9pm, another at 11) and have it work the same?

So far, what I’ve been trying to do is to take it at bedtime, that way it will give me a reason not to have an after-dinner snack – or even dessert since they are often milk based >>> that way too, it will limit calorie intake (have gained about 7lbs since October, some of which is due to over-eating at Christmas, & likely too b/c my thyroid levels were going downhill at Christmas & my eating went up, or at least the high-calorie sweets/treats did!). The problem though is that ‘bedtime’ varies .. I find I am very tired at the end of the day and end up falling asleep with my kids while reading them stories only to wake up at 2am to change beds. Some nights I take the supplement before reading to them (8:30-9) & others I haven’t b/c of a late dinner so I wouldn’t be taking the supplement on an empty stomach) so I take it at 2am when I wake up.

Based on the pharmacists info, taking it in the morning isn’t good for me as I’m a cereal person & well, you need milk & cereals are high in iron. How does everyone else find it for taking their medication for empty stomach & dairy/supplement restrictions?

Also, I find that since taking it – my mood has become a little more like it was when I was hyper (irritable) – although not quite as exaggerated or lasting as long. Did that happen to anyone else?

Another thing I noticed is that my endo gave me a dose which I think he plans on being the final dose (75mg Synthroid, since he prescribed enough for 9 mths!!!!) and he had said it’s typically ‘x’ mg for every ‘y’ lbs (I just can’t remember what he said for ‘x’ & ‘y’ to print it, but I think it works out to close to that based on my weight) when I saw him 2 mths after RAI. I guess time will tell as to correct dosing when I go for my first blood test after starting replacement in February.

Finally (yes, there is an end to my questions!!), in the last week (and especially the last day or so), I feel as though I have to pee ALL the time! I also now have pain in my lower back – kidney region (?) .. will have to visit my GP next week if it doesn’t go away …. has anyone else had this problem?

Thanks!

[Bobbi]

#1066903

Regarding the kidney-area pain and having to pee all the time, hockey: it sounds like you might be developing a urinary tract infection. Not everything that occurs post treatment is related to Graves. My doctor lets me come in and give a urine sample when I suspect an infection like that. The nurse reads it, and hands out a prescription if I’m right.

Also, the easiest, safest and best way to take your replacement hormone is first thing in the morning, on an empty stomach, waiting AT LEAST a half hour before eating anything else. Drink a full glass of water with your pill. Yes, you will have to make an adjustment in your morning schedule to accomodate this change. I did a fair amount of grumbling at first, myself. But it is worth it.

Oh, yes, and the four hour recommendation is for supplements — like calcium pills and vitamins. Not for the cereal or milk you might have at breakfast.

[Julie3588]

#1066904

At first I too was taking my synthroid whenever I happened to wake up in the morning and then had to wait the hour before I could eat anything. About two months ago, at the suggestion of another GD patient, I began setting my alarm for 6am every morning to take my pill, and then set a second alarm for the time I actually need to get up. Besides being more convienent in that I can eat breakfast as soon as I wake up, I have also noticed that I feel more stable during the day now that I take my pill at exactly the same time every day ” title=”Very Happy” />

-Julie

[sutan351]

#1066905

I had RAI in April and still trying to get into Normal Range. My TSH was as High as 84 down to 12 at my next Dr. visit and now at 7. My Dr. increased my dosage to 125 mcg and would like to get me closer to 2. I’m 47 and have been without a period for about 3 years. When taking Synthroid I do morning also – normally around 5a, since I invariably have to get up to pee – a lot during the night and early morning. I don’t have any kidney pain, but think I may have other issues there – unrelated to my thyroid ” title=”Smile” />

[hockey]

#1066906

Ski wrote:Well! Where do I start? All good questions, and we understand the frustration as well!

Here’s the thing about thyroid hormone. Our body absorbs it through the large intestine, so it needs to GET that far, alone, in order to be sure our body absorbs it as efficiently as possible. That’s the issue with taking it on an empty stomach. In addition to that, there are certain substances that can change the way it is processed in our bloodstream, if that is taken in very close in time to the replacement hormone. STILL, consider this: if you take it the same way each day, eventually your dose will be adjusted accounting for whatever method you use.

As far as taking it at exactly the same time, a couple of hours’ difference won’t make much of a difference, so don’t worry about that. The interactions with other substances have more chance of disturbing your condition.

The first period of time after taking a new dose of replacement hormone (first 3 weeks or so), it’s very typical to feel "kinda up," "kinda down," with no real rhyme or reason. You should find that those feelings even out in weeks 4-6.

Thanks for your insight Ski!

I’m still trying to figure out this replacement thing, especially when I’m not used to even taking a daily vitamin, it’s so nice to have a sounding board of others who have been there/done that to bounce ideas off of. I hadn’t consided that a higher dose may end up being what is needed if I were to eat something closer to the time of taking the replacement than what I perhaps should (eg. eating cereal in the morning). It’s also nice to get a general feel as to how long the up/down emotional fluctuations may last – I know everyone is different, but hopefully it will settle shortly.

I remember seeing on previous posts re: setting an alarm part-way through the night, at this point in time, I would prefer to try & get a full nights rest especially since I have little ones & they don’t always sleep through the night, I figure right now I don’t need any more interruptions in my sleep.

The back pain is gone (yeah), I went for a run today, first time in a long time & I felt really good running! I wasn’t sure how the run would go as this morning I had the biggest cramp in my hamstring, the pain was excruciating, I didn’t know whether to laugh or cry!!

Has anyone else experienced muscle cramps as they transition from hyper to hypo & then start replacement? I seem to be getting many cramps (neck, legs, shoulder/upper back) every day or couple of days.

[ewmb]

#1066907

I got and still do get lots of muscle aches etc. I am not normal yet, on my fourth dose change of levoxyl going from RAI in May to hypo to now. It can be very frustrating not knowing if you will feel well enough to do things still.

ewmb

[hockey]

#1066908

So, I’ve now been on replacement for 3 weeks … taking it at night still seems to be easiest (for now). I find the hour of the dose varies, but, that’s the best case scenario for empty stomach. Bobbi – not sure why in your post you said taking the replacement in the morning is the ‘safest’ – what exactly do you mean?

Now, I’m starting to feel hyper – irritable & not just short term – it lasts all day long (for instance, my son lost his favourite stuffed animal & we couldn’t find it, but it bothered me ALL day long … my daughter wouldn’t go to her skating lesson for the 3rd week in a row but loves skating, we had been earlier in the day & I just can’t shake the frustration), little things my husband does bother me – all very similar to pre-RAI. I’m also tired – but not at the same time (if that makes sense) .. I dozed off putting the kids to sleep tonight, now I can’t go back to sleep. Last night I was awake at 2:30, my mind is racing. I want to stay in bed in the morning as I feel tired, my muscles feel tired in the morning even if I haven’t been active the day before.
Could I be on too much replacement? Is it worth taking a blood test now, or do I wait for another week – my endo said to get one the first week of Feb. so getting one now would be 2 weeks early.

Thank you for the advise posted earlier re: don’t alter or ‘forget’ to take the dose as I would be apt to do the same (my husband would also have suggested doing the same thing). At this stage in the game (being close to blood test time), there’s no point in re-starting the clock on the dosing.

It seems as though most of the others who have posted here have been put on larger doses over time, moving up from 50 to 62.5 to 75 to 100 … my endo started me at 75mcg, is that typical? Could that potentially be part of the reason why I feel more hyper? Two weeks before I started the replacement I felt great!! Then, the week between Christmas & New Years, the sluggishness set in (blood test confirmed it was time to start replacement). Since starting replacement I felt more hypo at the beginning & now feel as though I’m trending again to hyper.

The tread "Too much levoxyl?" has also been helpful in looking at dosing etc. but I’m not sure what to do?

Any suggestions … should I go for a blood test now, or would it be better if I wait another 2 weeks as originally requested by my endo? Would waiting for a couple of weeks paint a more clear picture? If I am on too high a dose now, would it show on a blood test if I were to go now? I don’t want to yo-yo as has been mentioned, but It’s just frustrating with the irritability, racing mind, lack of concentration, lack of interest/motivation – the muscle cramps previously mentioend are essentially gone & the hyper symptoms seem to be getting progressively worse/more noticeable as the week(s) go on.

Sorry for the rambling – think some of that has to do with the lack of concentration I mentioned earlier.

Thanks,
hockey

[Bobbi]

#1066909

I suppose my use of the word "safest" was not appropriate, inasmuch as I didn’t mean "less dangerous". I meant that taking the replacement first thing in the morning and then waiting at least a half an hour before eating anything is the surest way of getting in a consistent dose of replacement, without other foods (which tend to be fortified with vitamins and minerals) interfering willy nilly with the amount of hormone that makes it into your blood. What you are working towards is consistency: a dose of hormone that provides you with the right amount all the time, without having to constantly adjust things. If you find that you are having lots of trouble over time, getting that consistent dose, then you need to consider taking the pill in the a.m., on a completely empty stomach, and waiting to eat.

As to your other question about whether or not you should wait the two additional weeks your doctor recommended before getting your blood checked: I know it is difficult when you think something is "off" to wait. I’ve been there. And I didn’t wait. And I prolonged the agony. By going in too soon, and getting an adjustment too soon, I ended up complicating my situation. So, it took longer to get the right dose. After that episode, I made myself wait the amount of time suggested by my doctor. So, based on my experience, I would suggest you wait.

[Author]

Posts