[katieladie85]

#1060267

Hello all!

I originally was diagnosed with graves disease in early 2012 and under went RAI therapy in May of 2012. I’ve been on Levothyroxine 112 mcg since October of 2012.

Earlier this year, my pharmacist told me that the brand of Levo I was using was discontinued. So they switched me to another generic and said they’d let my doctor know.
Well, three months go past and I guess they never notified my endocrinologist. Eventually I straightened that out but here comes my question…
About 1 1/2 months ago, I was working out and felt like I had a sudden low blood sugar attack. I was shaky, cold, light headed and felt I was going to faint. My boyfriend gave me chocolate and water but the this feeling lasted for a few hours. The following week I continued to feel slightly light headed, a little tingly on and off. I felt really weird! I went to my primary care physician and she thought it was blood sugar levels as I had started juicing a few months prior. But even with paying closer attention to my diet, the feeling didn’t go away.
I started experiencing major brain fog at work, tingly hands and feet on occasion. My mom suggested trying to get more calcium.
I now take my levothyroxine pill at 2a.m. so that I could start having milk in the morning. I bought calcium supplements to take during the day and I have a small glass of milk at night.
Since those changes, I have felt slightly better although I still feel a little tingly in my face now and then and get random dull head aches that don’t last very long. I also am starting to feel a small amount of anxiety at night, nothing compared to the anxiety I felt before being diagnosed with Graves Disease.

I have an appointment with my endocrinologist this week (as this was the earliest he could get me in). Anyone experience something like this? I’m really excited for my appointment just in hopes that I will soon feel normal again!

[Ski]

#1181653

Hi Katie,

It sounds like it’d be helpful for you to get some blood levels — thyroid hormone as well as the other things you talk about. Did your primary care physician have labs done? If not, you may want to check with your endo just so you can have those labs drawn in time to discuss results at that appointment — I know how tough it is to get in to see the endo, it’s nice to get the most out of the time we have.

I do hope you start feeling much better, but more importantly, that you figure out the root cause! Good luck!

[katieladie85]

#1181654

Thank you for your response! I just had labs done about 1 month ago and they were normal. I see my endo today so I’m hoping that I will get some answers!

[adenure]

#1181655

Would you be able to try brand Synthroid (instead of the generic)? Maybe it would help? It could be that the fillers in the generic aren’t agreeing with you or maybe causing absorption issues- just a guess though. There is also another T4 medication called Tirosint that some people seem to like, but I guess, as with most things, it depends on the person. If all your labwork (including general labs that you would get during a physical) are normal and this all started when you switched meds., I’d try brand Synthroid and see how it goes.

[SallyB62]

#1181656

I hope all is well and your doc’s figured out what is going on. Wow, you are very dedicated to take your med at 2 a.m.! Do post back and let us know how things are going.

I agree with the other posts on asking your endo about synthroid. I have been on synthroid since the start (03/2011). I consulted my endo, when the pharmacy was out of synthroid and wanted to give me a generic. The endo said that if I switched to generic, then I would have to start the blood draw series all over. Apparently, everyone’s body reacts differently to every brand of thyroid med, because of different excipient and thyroid hormone sources.

In fact, the endo said that I would have to stick with one brand of generic and insist on it at the pharmacy. Apparently, many pharmacies just fill the script with whatever generic brand is on the shelf.

Also, did you ever get the thyroid antibody tests? It took a very long time for my antibodies to subside. So, I had many of those thyroid side effects for a very long time, even after the antibodies were “negligible.”

Hope this helps. Keep after your docs until they help with your symptoms or refer you to other specialists.

[snelsen]

#1181657

Hi Katie,
I am wondering if you need to wake up at 2am for you medication.
It is true that we should wait to take supplements (if we take them) for at least 4 hours after our thyroid med.
But the general directions for eating breakfast, is 1/2 hour after taking the medication.
I suggest you review this with a good pharmacist, be sure to tell that person what you are doing now. And your doc. Don’t be surprised if the information differs a bit. It could.

Of course, there a zillion references on how/when eat after taking it. I think the most important thing is to be consistent. Do the same thing all the time.

I copied this from medscape and drugs.com. This is what I do. I am sure that other people wait longer, and some other variation. Again, aside from not taking supplements for 4 hours, which should be done, the other issues, whether to eat 1/2 hour or 1 hour after the med is taken, consistency is the main thing to do.
Here’s what I copied, and this is what I do.

“Synthroid works best if you take it on an empty stomach, within 30 minutes before breakfast. Follow your doctor’s dosing instructions and try to take the medicine at the same time each day.”

Re juicing. I had heard of it, but really did not know what it was in real life.
I assumed it is getting all you sustenance and nutrition by putting food in a blender, or some kind of a juicer. Apparently that is pretty much what it is.
It doesn’t ring my bell at all, I enjoy chewing, I enjoy crunchy things. The downside is that you do not get any fiber. Which we really need.
I guess I have a bias against it, for when I have worked in hospitals, and people have HAD to be on a liquid diet for a while because of surgery, they HATED it. The day they were able to eat a regular diet was a very happy day for them.
I think if it is important to you, and you are careful to have all your juices provide what we need from fruits, vegetables, carbohydrates and protein, and you add fiber, it should probably not make a difference in your blood sugars. If you would like to have this information, I suggest buying the equipment to test you blood several times a day, and/or when you have the weak, light headed and other symptoms you described. And, your boyfriend’s idea was very good. If your blood sugar is really so low that you have symptoms, drink some juice, or have some chocolate. You should feel better pretty fast. Faster with juice. But sorry, you did not ask about that.

The other posts, saying stay on the same thyroid med, contains very good advice. I also take Synthroid, cause it is the most reliable regarding the contents. Again, consistency, is the key. Which did not happen to you when the generics were changed. And there is really no way for you or us to know if they are or are not equivalent.
How did the appointment go???
Shirey

[katieladie85]

#1181658

Thank you for all your replies!

My appointment with my endo felt extremely frustrating at the time. I made a list of everything I’ve been feeling and everything that had happened to me in the past two months so that I wouldn’t forget anything. When I was done he started talking about panic disorder and anxiety. This felt so devastating to me since I had built my hopes up for a simple answer with a simple fix to what I had been feeling.

I asked about the change in pill causing these symptoms and he didn’t think that the difference in pill would cause so many symptoms. I take a generic made by the Lannett Company. He said this company was one of the first to be approved by the FDA when thyroid hormone started to be mass produced and has maintained a good reputation. I did not like this answer, got in my car, called my mom and cried.

Now that I’ve had some time to think about, I think that anxiety might be an explanation but I’d like to think that it’s from the pill change. He did test my calcium and thyroid levels (I haven’t received the results yet)

Since my appointment I have started exercising which I think is helping my anxiety feeling a bit, however I do still feel a lot of these symptoms still. I’m currently trying to build up some courage on asking my endo to either change my current medication levels a bit to see if that’s the problem or explore synthroid. However, synthroid does make me nervous as, like many people, I am on a budget.

Thank to everyone that replied, you all gave me a lot to think about and things to research. You all have no idea how nice it is to have a place to go to talk to others with these problems! I’ll let you know what happens with my doctor and blood results

[Kimberly]

#1181659

Wow, sorry for the frustrating appointment. Did you get labs done for this visit (Free T4, T3, TSH)? Yes, sometimes anxiety or panic disorder can occur separately from thyroid issues, but since the symptoms overlap, it definitely makes sense to see where your levels are.

And if you really feel that this doc is not taking your concerns seriously, a second opinion would be helpful. The “Looking for a Doctor” thread in the announcements section of the forum is a good place to start. Or some patients find that their general practitioner can manage levels post-RAI, if that individual is particularly knowledgeable about thyroid issues.

Take care!

[SueAndHerZoo]

#1181660

Hi Katie.
I can totally relate to the frustration of anxiety and trying to figure out what’s causing it. I’ve had it for most of my life but I’ve also had a goiter for most of my life so now I wonder if that’s always been part of the cause. It got much worse when I got Graves (about 7 years ago) and gets better when the disease is under control.

I had a TT 4 months ago and the anxiety fluctuates depending on where my thyroid levels are. But most importantly, I see an increase in anxiety whenever we tweak my Levothyroxine dosage, whether it’s up or down. Even the TINIEST change in dose sets off symptoms so I guess I’m really sensitive to it. I’m hoping that after I’ve been doing this longer I will be able to tell the difference between a real anxiety problem and / or a physical problem as opposed to a temporary set back caused by changing doses. I think I am probably at a good dose after this latest change so I am going to stay at this one for a while and see if the anxiety simmers down. It’s been 4 weeks since the last dose change and usually at 5-6 weeks I start to feel “normal” again.

Good luck – I hope you find some relief soon.
Sue

[katieladie85]

#1181661

Update! I got the letter from my doctor saying that my TSH is at 17.86 so we’re upping my hormone from 112 mcg to 125 mcg but still sticking with the Lannett Co. My T4 was normal but my T3 was on the low side of normal.

So, here goes! I’ll be patiently waiting to see if this evens out to normal! I’m surprised there was such a big difference between my blood tests in October versus the blood tests now.

But I have started swimming laps in the morning and am starting to get back on my normal routine.

[katieladie85]

#1181662

Sue, I can definitely relate with trying to figure out the difference between graves anxiety and normal anxiety! I’ve just started trying to figure out how to calm myself down (breathing deeply, listening to happy music, looking at cute pictures of animals online)
I hope your normal feeling comes back sooner rather than later. I know they can be frustrating!

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