[Kimberly]

#1062183

Hello – Hopefully, others who are on thyroid hormone replacement will be able to chime in on the coffee issue, but here is an article on our web site that talks about how food and other supplements — if not properly spaced apart — can interfere with the absorption of your replacement hormone:

http://www.ngdf.org/cms/modules/files/u … 198082.PDF

Hope this helps!

[smj78]

#1018006

I don’t know if I spelled that medication right. I had RAI on 2/3/11. I had bloodwork on March 9 that showed my levels were still in the hyper range. Within 2 weeks I was beginning to feel a little yuck and had weight gain. I tried to just wait and see since I did not have another appt until June. I ended up calling and got bloodwork this week. They are mailing me results and the nurse was in a hurry on the phone, but she told me I was a "litte" hypo now and prescribed .05mg on Levonxyl. I will be curious to see my actual levels.

I just started today. All she said was that I should take it with a glass of water on an empty stomach and not eat for 2 hours. There is some unclear info on my script vs the internet. I know I should not have anything with iron or calcium-some say 2 hours after, some say 4 hours after. Which is is? Does that mean no calcium, like even yogurt? I usually eat yogurt in the morning.

Also, is there an issue with having coffee a couple hours after?

I started to eat better and have been eating a higher fiber diet, which I hear can effect it. I guess I need to start somewhere though to get a baseline in terms of where my levels are after being on this for 6 weeks. I would like to stick to the high fiber for all it’s benefits.

Are there other suggesstions on how to properly take this medication so it works to it’s full potential?

[smj78]

#1062184

Thank you for the article. Interesting. I would love to hear from those who take the medication. I will search it here too. I have felt just awful today. I am really hopeful and excited about the idea of feeling normal again someday. I have been feeling really alone in this, maybe just self-pity. You think my husband would read more on it and be more supportive. Yeah, not so much!

[Bobbi]

#1062185

I would suggest that you talk with your pharmacist about how to take the replacement hormone. Two hours is far longer than I’ve ever heard of having to wait to eat. Typically we are told to wait a half hour to an hour. But it could be that the specific preparation that you are on makes the difference, so please check with the pharmacist.

We are told not to take calcium supplements or vitamin supplements for a minimum of four hours. That does not mean that we cannot eat foods with those vitamins and minerals in them. Again, double check with your pharmacist about your specific replacement product, but I don’t think you need to worry about your morning yogurt as long as you wait the prescribed time to eat after taking it.

[smj78]

#1062186

I am thinking that they mean supplements too and not actual food. My mother-in-law is on something similar and that is what she was told.

Just as reference, I am on .05mg (50mcg) of the medication.

I had blood work on 3/9 and the results were:
FreeT4=3.27 (.82-1.77)
TSH= < .006 (.45-4.5)
Free T3= 12.8 (2.0-4.4)

Then I had blood work done on 4/12 and the results were:
Free T4= .13 (.82-1.77)
TSH= 1.660 (.45-4.5)

There are no Free T3 results given on the latest labs. I wonder why. Should I request that they continue to get those?

I feel like garbage, but really my TSH was considered in normal limits. Why would I feel like this? I can’t imagine what I would feel if my TSH was above limits. I know I should expect some strange feeling until I am normalized, but is it typical to feel so cold and tired, swollen hands and weight gain when TSH is in normal limits?

[snelsen]

#1062187

Hi,
I am writing to address taking the replacement hormone. I take Synthroid, but I think they are similar.
This is what I do. And one the most imperative things to do, so that labs reflect what is really going on, is to be consistent.
I take it in the morning, first thing, with a glass of water. Frequently, I have already gotten up sometime in the early morning to give my bladder a break! So I take it then if I am up anyway.
I do wait 1/2 hour until I have coffee. I use some 1/2 1/2 because that is they way I like it!
Generally, I do not eat right after I get up, anyway. So waiting 1/2 hour after the replacement hormone is not a problem for me.
I DO wait until after 4 hours before I take vitamin C and D, and multi-vit. I also take fish oil most days. When I take the supplements, is pretty much random when I think about is, as long as it is four hours after my Synthroid.

You can check my regimen out with your pharmacist, too. This works very well for me.

I would ask if free T3 should be with your thyroid panel. I know that my endo always orders it, but pretty much uses how I feel and the TSH for dose changes. But he does consider it, too.

It really has been a very short time since your RAI, and like everything associated with Graves’, everything takes way too long, especially when we feel crappy.

Re diet, I eat what I want, and as long as the thyroid hormone has a chance to metabolize for 1/2 hour before eating, I pay no attention to my diet, as related to Graves’ one way or the other. I would not worry about that. There is a lot of evidence that a high fiber diet is healthy for us for a number of different reasons.

Re how you feel, being cold is associated with being hypo, as you know. I hate to say this, for I have had the same experience as you, feeling cold, and having labs reflect hyper or normal. But it all takes way too much time, and there is not much we can do about it, except report how we are feeling, and struggle to get the right dose for us. And that means that labs must be drawn at LEAST six weeks apart, if not two months, to reflect what is really going on with your thyroid metabolism. Otherwise, dose changes may be made on results that do not reflect what is happening in your body.

It is easy for friends and family NOT to understand any of this. It really does help me to reflect back on when I WAS IN THE NORMAL POPULATION with none of this crap going on, and try to imagine trying to understand it in someone else. This thought helps me realize why this website is so valuable, and why nobody "gets it." There is no way they can really understand. And our symptoms are not pleasant for us, and frequently not pleasant for those who love us. They can try to be supportive, but they really cannot understand how hard it is to have graves’. But remember, YOU WILL get to a normal place, and "feel like you," and remember at the same time that it is slow, frustrating and you don’t feel great until you get there!

Weight. Try to look at all of this over the long haul. Weight gain over two weeks, whatever it is, not not much to use as a reference. If you feel crappy, you are probably not as active as you usually are? Try to look at 3 months from now, and begin to believe everything will be better for you…(:
Shirley, who has been there, done it, and am still doing it, as we all are!

[Bobbi]

#1062188

Just arriving at normal levels of TSH and thyroid hormone after RAI or surgery does NOT mean that you will feel normal. Your various body systems suffered damage while you were hyperthyroid. Muscle was lost for example ( and the heart is a muscle). It takes months AT normal levels of thyroid hormone for your body to heal. So be patient, please. Look for "improvement" not any absolute remembered sense of normal, and you will be pleased with the recovery process.

As for asking for T3 numbers. Or antibody levels. Or anything else. Your doctor is likely trying to ask for the most important numbers, the numbers he/she feels best reflects your thyroid issues, not "all" the numbers. This saves your insurance co (or you) $$$ in the long run.

[snelsen]

#1062189

Bobbi, you said that so well, in a much shorter form! That is a very good summary of "us!" It certainly does take time to recover from the insult to our bodies! Regarding the labs, I think that the more we understand and learn from our docs, the better. So I simply meant for her to ask about the labs, and the reasons for each test. Knowledge is comfortable and reassuring for me, so my endo knows this and he does explain the rationale for labs he orders, and what he thinks about. I like this very much. But this is just my experience.

[kristenb]

#1062190

Has anyone else heard about birth control pills ?? My dr and pharmacist said there was almost no effec Yyyyyt

[smj78]

#1062191

I think I read that birth control pills can have an effect on absorbtion. I am not currently on any, but I htink you have tot ake them 4 hours after the hormone replacement.

Thank you everyone for the ideas and thoughts. I know it takes time and I have to be patient…not one of my strong points.

The weight gain is really frustrating, mostly b/c my work pants fit tight and the thought of having to get new pants is not exciting to me. I have been really good and I still gained another 2 lbs this week. I can’t believe that part. Ihave been trying to eat right, as to not starve myself, yet also not eat bad foods.

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