[hadleyogram]

#1058963

Wondering if anyone else has had this experience. In 2005, I had the RAI for Graves disease. It took a good two years to feel good again, and been smooth sailing ever since. Of course, it took some time to get my right synthroid dosage adjusted. I take 125 mcg’s, and it does vary somewhat. During the fall and winter, my doctor has me take my pill every day. After spring is about halfway through and throughout the summer, my doctor has me take my pill only 6 days a week, skipping Sundays. This has been going on since 2007, so over 5 years. This has kept my TSH right about 2.5, which ahs been ideal for me.
Well, I had my TSH tested in Feb of this year, and it was .01! So, my thyroid is way too high. My (new) doctor switched me to 112 mcg’s, and was on that for 2 months. Did my TSH blood work again, and now it is .16! STILL my thryoid is too high! He has now switched me to 100 mcg’s and I have to wait another 2 months for a retest. I am just dumbfounded about why this is happening. I have been under TREMENDOUS amounts of stress since last September, but not so sure stress would change my TSH level. (Found out my Mom has stage 4 ovarian cancer, and she is doing much better now, but yes, so really stressful.)
I have made an appointment with my doctor for Friday afternoon to discuss with him, but just looking for feedback before then. I like to be informed, and also am thinking about seeing my endocrinologist I had back when all the Graves was really bad and that doc did the RAI.

Please help! Thanks!

[Bobbi]

#1171236

I’m sorry to hear about your mom’s illness.

I have had fluctuations in the amount of thyroid hormone that I need from time to time in the years since my RAI. I have had to lower it for a few months, only to raise it back up again later. Keep in mind that we are regulating thyroid levels manually: our bodies don’t adjust the amount of thyroid hormone, the way normal bodies do. There can be things going on in the body that require more/less hormone than normal. Sometimes, we have residual thyroid tissue left, and antibody levels can affect that tissue. These events don’t happen often, but it is not necessarily unusual, either. It is a good thing that you are on top of things, and getting your replacement dose adjusted.

[genuinruby]

#1171237

I am so glad to read this! It reinforces what I felt to be true. Of course, my doctors, shake their heads, and sigh. They believe that once the thyroid is gone, the antibody issues are gone as well. Last Fall, I was coasting along just getting to the point of feeling good. Then about the time of lab tests, we had a remodel start at work. My office was condensed to a desk in a busy main office and I won’t bore you with details, but I couldn’t walk anywhere without having to “squeeze past” another person, due to overcrowding. My TSH dropped into hyper range, and the doctor panicked and cut my dose, my next TSH was 10.3. Now, six months later, I am see-sawing my way back up to the original dose. I was definatly in the hyper range, I was burning up from the internal body furnace, very edgy and irritable, insomnia and heart palps. I do feel blessed, I can always stop in here and remember I am not on this journey alone.

Ruby in Reno

[KristaG]

#1171238

Thank you for your posts regarding fluctuating thyroid levels. I was diagnosed with Graves’ in 1998 at that age of 29 and had my thyroid gland surgically removed in 2002. (In between I was on antithyroid drugs, which didn’t “stick.”) I have been taking levothyroxine ever since. Since then, my thyroid levels have fluctuated, despite the fact that I take my pill 30 minutes before eating breakfast, at the same time every day, and I even make sure I buy from the same manufacturer to avoid additional dosage variations.

It has been difficult to find an endocrinologist (I went to 5 in Minnesota until I found a good one, and now I’m headed for my 3rd in California) who would agree to test my levels more frequently to stay on top of it and adjust the medication if needed. (And who would treat a TSH between 2.0 and 4.5.) How come there seem to be so many hypothyroid patients that can stay on a single dose of levothyroxine and just “let it ride” with annual checkups, for years and years? At my last visit to the endocrinologist, my TSH levels went from being on the hyper- side of normal to very hypo, in only 6 months. My endocrinologist accused me of not taking my medicine. He increased my dose, checked me again in a month – and my TSH was even MORE hypo. What gives? Is that because TSH lags?

Anyway, I am trying to stabilize my levels; my ob/gyn told me that Vitamin D affects the absorption of thyroid hormone (I didn’t research that, so I don’t know if it is true), so since my D levels are low I started taking supplements of that. I’m also avoiding soy. And per the posts I read, I will do my best to avoid stress!

[Kimberly]

#1171239

Hello – Hopefully, you will get some responses from others who are on replacement hormone (I am on anti-thyroid drugs). However, you might consider whether you have made any changes in how you are taking the meds, specifically in terms of time restrictions regarding food and supplements to ensure maximum absorption. The general rule is to take the pills first thing in the a.m. and then wait 30 minutes (60 minutes is better) to have breakfast. Also, calcium/iron supplements should be taken 4 hours apart from Synthroid, to make sure the supplements don’t interfere with absorption.

If you continue to remain in hypo territory, even after making these changes, a recent study suggests that certain GI disorders can have an affect on absorption, so this might be worth discussing with your doc:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window)

http://www.thyroid.org/professionals/publications/clinthy/volume24/issue3/clinthy_v243_4_5.pdf

Take care!

[Hopeful]

#1171240

Ughhh! I sooo feel your pain.
I am 8 years post RAI, and I still have wonky levels – I guess that will always be the case. I have never heard of reducing dosage in the spring and summer, and that makes total sense!
After being way too jacked up last summer, I reduced dosage over the winter, and now, here we are in April, and I am too low.
Blood was drawn yesterday, and I have an email in to my doctor to hear what he has to say. T4 level, T3 low, TSH through the roof.
So tired of palpitations, anxiety, I am ready to feel better again! I find that even when levels are low, I can’t tell (except my clothes are tighter!) I just know when levels are off, either too high or too low, I feel wrong. The only time I felt good was when I was pregnant – suppressed the immune issues, and I felt great. Of course, once I weaned, everything went haywire, I’ve been managing that for the past 3 years.
Anyway, thanks for your post – I completely understand!

[Ree]

#1171241

When it comes to TSH levels I believe all our bodies are different. I have or had Graves Disease. (I don’t know if after the thyroid is destroyed you still are considered to have the disease.) I had RAI ablation in 1997. Since then my levothyroxin doses have varied. My endo said that my body was hyper for long it cannot function with the TSH in “normal” range. My TSH is kept on the low side and when it starts to go up I begin to develop hypo symptoms. I tell him that my body knows better then the blood tests. I’m not a lab value.
I do have one question for y’all that someone might could answer. As I said I had RAI. I was under the impression that this would cause the thyroid to shrink. Recently I had a CAT scan done of my upper chest and in the results it said that the thyroid gland was normal sized. Is this possible? Thanks for any input.

[Bobbi]

#1171242

Is it possible for thyroid tissue to remain after RAI? Yes. It depends upon the dose given, the purpose of the dose (euthroid or ablation) and its effectiveness.

[Ree]

#1171243

Thanks Bobbi. I was given a dose high enough to completely ablate the thyroid that is why I thought it odd that it would be normal sized. I figured it should at least have shrunk.

[hadleyogram]

#1171244

It has taken me a while to come back, but here I am, just busy! I don’t know what the reason was my thyroid changed like that, but having been on 125 mcg’s for years, I am now on 100 mcg’s. Adjusting through the changes were difficult as my dosage was lowered, but I am doing really well now. The change from 125 mcg’s to 112 mcg’s was the hardest… VERY sleepy and NO energy, this lasted for about a full month. When I changed from 112 mcg’s to 100 mcg’s the same thing happened, but lasted for less than 2 weeks. I am always surprised how I fail to notice my own thyroid levels are too high? i will guess a million things it could be, and my thyroid should be the 1st thing I notice! I had lost some weight, was feeling that “quarrelsome” feeling, heart palpitations (those happen at odd times and it’s more as if I feel I am on a rollercoaster for a few seconds, my heart sort of jumps beats as if I am scared briefly.) I am back to my normal self, and feeling really good. I think it also helps that my stress has declined though and my Mom is doing much better .

An important thing I learned from this though:

About a year prior to my thyroid levels changing, I had started taking generic levothroxine, not the brand name Synthroid. My doctor always told me to take Synthroid, but I thought what the heck? I will save money so why not? As it turns out it is not the same as Synthroid. I’ll try to explain it right. When working with mcg’s, every place that manufactures medication cannot get the exact, precise mcg’s. Even Synthroid makers tell us each pill may vary slightly. So, each company does their best, but each company has different ratio’s and standards for making the medication. So, now you go the pharmacy and ask for generic thinking its perfectly fine. Well, the pharmacy can’t tell you or guarantee which generic pill came from where, so you may get it from one place one month, and an entirely different place the next. So, the actual mcg’s of your generic pills will have a bigger difference. If you stick to ONE manufacturer, and they practice the same standards everytime, now you will have a more reliable dosage. Make sense? I signed up for a prescription savings card and my Synthroid brand name is about $23.00 a month.

Some people will argue it’s just the pharmacutical company trying to make more money… but at this point with all of our thyroid problems who cares?! It’s worth a little more just to have the peace of mind!

Another thing I never stopped to think of while my thyroid level was getting too high is that while I did not change when I took it or things like that (someone mentioned that, and thanks!) But, I had began working out more regularly and I had not really worked out in years. So, it is possible by working out, my metabolism kicked up and this had an impact on the absorption of my well, levothroxine at that time.

Again, overall, I am very thankful I had the RAI done when I did. It would be nice to not have such morning puffy eyes all the time (I KNOW this is from all this!) but other than that I am anticipating some more smooth sailing in my future!

Good luck to all of you and please feel free to ask anything if I can help

[Author]

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