[Cindylynn]

#1058726

Good morning,

I have Graves disease and was treated with Radioactive Iodine approx. 6 years ago. Since then I have been experiencing issues trying to get my thyroid levels balanced.

I am presently on .112 of Synthroid once a day and am experiencing hypo symptoms. Previously I was on .125 and had hyper symptoms. My understanding is that there is no dosage in between these two amounts.

From speaking with others on thyroid problems I understand that some people when encountering this issue do alternative dosage issues – ie: .125 one day, .112 the next, etc. I have also heard of some people whose Drs. have just increased the dosage a couple days a week – ie: .125 Fridays and Mondays, the rest of the week .112.

Has anyone else had this issue of getting their thyroid levels balanced and had any success with the alternative day dosage described above?

Thanks! :” title=”Question” />
Thanks!
Cindy

[Bobbi]

#1169613

Hi, Cindy. I am on two different doses. I take one of them five days a week, and one of them two days a week. We had to experiment. I started out on every other day, but that put me into hyper territory. I’ve been on that dose for a year or two now, with good results.

The reason it works as I understand it: T4 (which is the active ingredient in our replacement hormone) has a half-life of six and three-quarters days….so just shy of a week. That means that it is biologically available to the cells to break down into T3 for quite a while. It builds up in our bodies, and is used as necessary. By taking a slightly larger dose some days than others, you incrementally build up the amount stored in the body.

Hope this helps.

[Cindylynn]

#1169614

Thank you Bobbi for the response on this matter.

Are the two higher doses days consecutive or does it matter?

Cindy

[carolinew]

#1169615

Hi Cindy,

Great question as I am just now facing the same dilemma. I was diagnosed with Grave’s in 2006, went on PTU, stopped taking PTU, was stable for a while, then my levels started to slowly drop over time and I am now on Synthroid. 0.137 mg made me hyper so I switched to 0.125 mg and I am now having hypo symptoms (taking 15 mcg Cytomel twice a day right now to get me through my days until my levels come back up). (this disease is such a pain in the butt)

Does anybody else have the same experience with their thyroid levels dropping over time? Does it mean that my thyroid gland is dying?

Also, if there are any other runners on this forum, can you tell me if you are having trouble adjusting your levels while you are training? It seems every time I try to start running consistently I end up hypo again.

Thank you.

Caroline

[Kimberly]

#1169616

Hi Caroline – Hopefully, you will get some responses from other runners, but in the meantime, you might do a search for "runlacie" – she is a distance runner who posted here a while back.

As for going hypo over time after a course of Anti-Thyroid Drugs, yes, that can happen. It’s not well understood, but one theory is that Graves’ antibodies can occasionally block thyroid hormone production instead of stimulating production (which is the more common course).

[carolinew]

#1169617

Thanks for the reply Kimberly. And for the tip about "Runlacie", I will definitely check that out.

Interesting theory. So much is unknown about this disease, it’s very frustrating not knowing what’s going on with my body from one day to the next, and the doctor’s can’t offer much help in terms of explaining things, and they don’t really understand how you’re feeling physically and emotionally through all of this.

Caroline

[Bobbi]

#1169618

In answer to your question, Cindy, my higher dose is in consecutive days. I don’t think it matters other than to help me remember when to take the higher dose. If there are specific days of the week to take the higher dose it is easier to remember. As long as you know what day it is. ” title=”Smile” />

Another rationale I’ve heard for going more hypo, over time, is that the over-worked thyroid cells wear out. That may be too amateur an explanation, however. On the other hand, approximately 10% of the population goes hypo as they age, so perhaps those of us who have seen an increase, over time, in the amount of our replacement hormone needs, would fit in that 10%.

[Cindylynn]

#1169619

Thanks everyone for the responses and input!

I am seeing my Dr. next week and will discuss the Alternative Dosage situation to hear how he feels about it.

Special thanks to Bobbi for the additional info on the days to take the higher doses – I am with you on consecutive days being easier to remember. I don’t know if it is the aging thing or the Graves – but the memory isn’t what it used to be so I like your thoughts on the dosing!

Take care,
Cindy

[carolinew]

#1169620

Bobbi: that’s what I thought, in my case, that the gland is so damaged from my immune system that it is slowly dying. The first Endo I saw also had this opinion, that it was going to die eventually.

Can anyone tell me what percentage of Grave’s patients develop thyroid cancer?

[Bobbi]

#1169621

Kimberly may have more complete data than I do. But what I was told, at a conference long ago, was that the incidence of thyroid cancer is almost nil especially when our thyroids have been removed — even via RAI (which is also a treatment for thyroid cancer ). As for those who retain their thyroids, I have not heard of any connection between Graves and thyroid cancer.

[Kimberly]

#1169622

I’ve actually seen conflicting studies on the incidence of thyroid cancer in Graves’ patients — some say that it’s more common, others say less common.

One issue that did come up in this year’s conference is that patients with suspicious nodules who are considering RAI should undergo testing to ensure that the nodules aren’t cancerous. If cancer is found, it’s important to focus on treating the cancer, which usually involves thyroidectomy (often followed by RAI in higher-risk cases).

[SallyB62]

#1169623

My doctor has mentioned skipping one to three doses per month, since going down to the next level may be too large a jump.

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