# Levo/Synthroid; rising TSH???



## nikkij0814 (Jul 13, 2011)

I'm currently in the process of trying to iron out my dosage with my endocrinologist, but have had some odd things happen with my labwork. I've heard mixed information about the difference between levothyroxine and Snythroid, but my current endo tells me that they are the same so I should just take the levo. I'd be curious to know what the experiences have been with these two medications from people who actually have hypothyroidism. If one is better than the other, I'll happily pay more money!

Here's the strange thing - my dose was too low the last 3 visits, and each time the endo raises my dose I feel GREAT for the first week or so, then it's as though I slump back down and wait for the next appointment. I'm going to call their office today to ask about this.

I'm continuing to have problems with an ever-raising dose, and was thyrotoxic back in the spring when I was under the care of some doctors who really didn't know what they were doing. Here's a rundown of my situation:

2005 - thyroid removed completely, followed by ablation.

Through the years, a doctor who I'm no longer seeing continued to raise my Synthroid dose, and eventually in February of 2011 I completely fell apart, had extreme anxiety, heart problems, sleep problems, depression, weight loss, generally a horrible time! He had me up to 225 mcg, and at the time I weighed 110 pounds. (Got down to 104 due to the circumstances, which is beside the point...) My TSH was down to .002, and he was reading the lab results and telling me they were fine. They had me on 225 mcg of Synthroid. (!!!)

When I was completely falling apart, another doctor figured out that my dosage was too high and sent me to an endocrinologist.

In April of 2011, the endocrinologist lowered my dose to 125 mcg. By the time summer rolled around, (July) I felt better, and he said I needed to go up to 129 mcg. I don't remember what my TSH scores were at this point.

In August, I started to feel worse and worse, (tired, depressed, achey, hair falling out) had my bloodwork tested, and my TSH came back as 4.2. They increased my dose to 137 mcg. I felt much better for a week or two, then slumped down, but not as badly as I had been feeling.

In early October, I was still struggling but getting by, and had an appointment. My TSH had risen to 6.99!!! The endo raised my levo dose to 150 mcg. I felt amazing for the first week, and once again slumped down, but definitely not as "low" as before the dosage increase.

It doesn't make sense that as the dose increased, my TSH STILL rose at a later appointment. I also don't understand why I feel better and then "slump" back down. I'm now 120 pounds, and my next appointment is in December.

HELP!


----------



## lainey (Aug 26, 2010)

> 2005 - thyroid removed completely, followed by ablation.


So clarify things for me--was this because you were hyperthyroid or cancer? Do you mean you had the surgery and then RAI?

If you had cancer, even in your listed history, it is normal for the doctor to keep your TSH suppressed. This is to prevent regrowth of thryoid tissue, and is the standard protocol for THYCA patients.

It seems that your endo is increasing you in small amounts. That is good if you were hyper on the much higher dose, and it also explains why you briefly feel better and then worse--your TSH is still not where it should be.

I don't agree that the generic levothyroxine is the best choice at this point--if your TSH was steadily dropping again, and then rose, it is likely a medication issue (as you don't have a thyroid). Generic drugs can vary from brand to brand, and it is recommended that you take one BRAND of a medication--this doesn't always happen when the pharmacy is filling a generic prescription.

I would recommend going back to a branded medication, honestly. It wasn't the synthroid necessarily that was the problem before, as most of your symptoms would be attributed to your suppressed TSH levels.


----------



## Andros (Aug 26, 2009)

nikkij0814 said:


> I'm currently in the process of trying to iron out my dosage with my endocrinologist, but have had some odd things happen with my labwork. I've heard mixed information about the difference between levothyroxine and Snythroid, but my current endo tells me that they are the same so I should just take the levo. I'd be curious to know what the experiences have been with these two medications from people who actually have hypothyroidism. If one is better than the other, I'll happily pay more money!
> 
> Here's the strange thing - my dose was too low the last 3 visits, and each time the endo raises my dose I feel GREAT for the first week or so, then it's as though I slump back down and wait for the next appointment. I'm going to call their office today to ask about this.
> 
> ...


The problem might be that your doctors are titrating your thyroxine replacement based on your TSH. This is soooooooooooooooooo wrong. I am under the impression that you have not had the FREE T3 and FREE T4 labs done?

Please read.

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

http://www.drlam.com/articles/hypothyroidism.asp?page=3

It is my humble opinion that it is not either med (although I abhor generics) but rather the doctor's lack of knowledge.


----------



## nikkij0814 (Jul 13, 2011)

I did have my thyroid removed due to cancer, papillary carcinoma.

And yes, I realize that they do want to keep my TSH supressed, and it isn't supressed to the extent that it needs to be.

They have tested my t3 and free t4, I don't remember those lab results but the endo says that my TSH (and thyroglobulin, however that SHOULD be out of range to document that there is no detectable thyroid tissue, correct?) is what is out of range.

I can tell when my TSH goes down (is supressed further) and I feel better, I just don't understand why I feel better after a dose increase, and then go back to feeling crummy so soon after. It seems that some on this board seem to think it may be the levo? So, are you saying that the pharmacy fills with any generic, not always the same one? I will need to call them today ...


----------



## lainey (Aug 26, 2010)

People do commonly have the reaction you describe to the dose adjustment. This will likely continue until your TSH comes closer to euthyroid.

Yes, the pharmacy can change brands of generic at any time. They will do it regularly or irregularly, it is really about supply and price from their perspective, and they are not required to tell you.

If you are getting irregular lab results on the generic, you should probably go back to the brand.


----------

