[annism]

#1060441

Hi,

I am 6 years post RAI. We have yet to have my labs come back stabilized and I am getting a bit frustrated with the process.

I love the dosage of meds that I am on at this point in time.
Liothyronine 5mcg 2X a day
Synthroid 0.1 mg (100 mcg) 1X a day

My current labs:
Free T4 0.93 (norm 0.59 – 1.61)
Total T3 102 (norm 87 – 167)
TSH 0.18 (norm 0.34-4.82) (This is up from 4 months ago when I was 0.06)

I know that my endo wants to lower my meds again. The T3 and T4 are spot on and for the first time in years I am feeling good. I put on a bit of weight and I have completely stabilized my low blood sugars.

I guess the bottom line is that I am a bit afraid that I will go back to the yucky hypo days. My first endo retired 1 week after my RAI and did not tell me that I would need meds later. So I have experienced TSH numbers over 80 and the hospital stay that went with it.

I am a busy 47 year old woman. I have a 6 year old boy, and I am a licensed psycho-therapist who has her own private practice. I can’t schedule time to be low thyroid and the ditzy-ness that goes with it. My practice is in a small California town and I am the only therapist with in a 45 minute drive. People and family depend on me.

If any one knows why we have to be so concerned over the TSH, an indirect measure, when my direct numbers are so good I would like to know.

if there is good medical reasons I can go with it, but it seams to me that the T3 & T4 numbers are more important.

Thanks,
Ann

[Kimberly]

#1182635

Hello and welcome! I’m hoping that Shirley will chime in here, as she has had experience with this issue.

There are a couple of specific concerns regarding low TSH (noted below), but if you know that you won’t feel well if meds are lowered, that is definitely a frustrating situation! Hopefully, the following links will be of interest:

(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, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

Low TSH and risk of atrial fibrillation:

http://www.thyroid.org/wp-content/uploads/publications/clinthy/volume25/issue1/clinthy_v251_6_7.pdf

Low TSH and risk of bone loss:

http://www.jci.org/articles/view/63948

General article from the Cleveland Clinic on low TSH; includes some meds that can affect TSH:

http://www.ccjm.org/content/77/11/803.full

Take care – and please keep us posted on how you are doing!

[snelsen]

#1182636

Hi Ann,
I am in the same situation. Always a suppressed TSH. Always! T3 and T4 usually in normal range. The references Kimberly mentioned, are the reasons your endo and mine encourage us to lower our Synthroid dose. But, for me, I feel like crap, have hyPO feelings, sluggish, and also developed GI issues, gastro paresis. I said that I could not live like that, so at this time, I am taking 100mcg 3 days a week, and 112 mcg four days a week.

I am older than you, in my seventies. My endo has been trying to lower my dose for years, cause he was concerned about osteoporosis and atrial fibrillation (Kimberly has nice references below for you.) Well, I developed both of these things. Could be age related, too. But i developed a fib last summer,and that is a real risk, so are the drugs you take to be anti coagulated.

The whole issue is, that I wanted to feel like a healthy human, do all the stuff I do. With the lower Synthroid dose, my life stopped and was hell. I can now walk three miles, enjoy it, have stopped drinking Ensure, and I can eat and enjoy food again. And my TSH is again suppressed. I guess, in my case, it is a life style choice, but accompanied by some risks. But I kinda feel I’D HAVE ‘the same risks if my dose was lowered, just would not have a life at all.

It is difficult. I don’t have good and easy answers for myself.
Shirley

[annism1]

#1182637

Thank you Shirley & Kimberly,

It is so empowering to understand. Knowing the situation and the possible outcomes allows me to have a productive conversation with my Endo.

I have a great Endo, and he is always willing to listen to me. Both of you have given me the ability to communicate with him even better. Knowing the possible consequences of the different choices, and having a week to think about it (as well as talking it through with my husband) I am sure that my Endo and I will be able to come up with the best treatment plan we can.

Shirley, thank you for sharing your experience. This is truly helpful. It is giving me and my husband a lot to think and talk about. that has been the challenge since I was first diagnosed. No one tells you about the long term consequences. I would have made some different treatment choices if I had known then what I know now. I believe you have given me a wonderful gift. Thanks so much.
Ann

[Abby]

#1182638

Most studies regarding TSH are performed on healthy people, not people whose thyroids have been ablated. The conclusions reached in studies on healthy people are then presumed to be applicable to us as well, a presumption based more on belief than science, imho. The third article cited, from the Cleveland Clinic, shows just how problematic an overreliance on the TSH can be.

My personal experience is that for 10 years after DX of Graves’ Disease I suffered from inadequate thyroid replacement. No one should have to live like that.

Any time I took enough Synthroid to get my T3 into the normal range–and enough for me to feel normal–my TSH plummeted. Any time my TSH was normal I felt lousy. One little pill fixes everyone, right? Not in my case.

Finally, I found a doctor who would prescribe Armour thyroid, in addition to Synthroid, to give my T3 a boost. Getting my T3 just barely into the normal range has allowed me to function. And, curiously, with the addition of the Armour, my TSH is just fine, too.

Make sure that your TSH is measured first thing in the AM. TSH has a diurnal variation. It’s highest in the AM. Don’t take your meds until after your blood is drawn. This may help to make your levels look more acceptable to your doctor. And, if you feel good, and your levels look good, everyone is happy

[beach45]

#1182639

Good topic; I wonder too about this; I hear a lot of talk that TSH is not as important post RAI or TT; yet then there is a factor of potential afib or bone loss; that is, if the FT3 levels are too high also. I think that TSH, FT3 and FT4 all need to be looked at along with patient symptoms. I know enough now charting my blood work, thyroid levels and symptoms for almost 4 years pre and post RAI, along with medications I was taking for thryoid, at what levels I feel my best; and with taking supplementary T3 myself, my TSH will always be suppressed as long as I take the T3 medication; if I don’t take it I will go hypothyroid again and have other symptoms that could put me at risk for other health problems; plus quality of life goes downhill for me; so I’ve worked with my doctor(s) to realize where my FT3 is best for me without looking at the lower TSH too much; for myself I’d rather have a better quality of life than have a low FT3 in range and then feel miserable as I have off and on post RAI; I’m having issues now and I know I need raises in thyroid medicine, yet having other issues which seem to be inhibiting the hormone from getting into my cells properly. I’m hearing more like what Abby says that the studies are done on people with a thyroid in place; in fact I am thinking that a lot of the treatments and levels, etc., are more based on patients who still have a thyroid gland and that more research needs to be done on what levels are appropriate and what types of thyroid hormone may be appropriate for those without a thyroid gland whether post RAI or TT; this is what I’m finding from my experience and not just on the Internet yet with people in my town who are coming out of the woodwork without a thyroid gland and really stuggling; because their doctors are dosing them based on the TSH only blood test. So to answer your question from my point of view, experience, talking with many doctors, research and listening to others struggling post RAI or TT, I believe that the FT3 and FT4 tests are much more important than just TSH testing.

[Raspberry]

#1182640

Great to see you Beach! How’ve you been? Sounds like you’ve been having to wrangle a bit to get the right thyroid meds but I hope you feel better soon. There are studies and theories about how the Graves’ antibodies can affect TSH in and of themselves and we keep those antibodies even without a thyroid. And there’s also TSH’s overreaction to T3 or Armour supplementation. I really wonder why modern docs aren’t keeping up with these things and why we have to fight so hard and research so much??? I was lucky in that my TSH popped up from suppression early in my ATD treatment and has actually been a useful barometer moving in line with the FT4 and FT3. If it were not though, me and my endo would likely had some disagreements. Still I’ve been less lucky in that on paper my ATD treatment looks like it is going well but I still feel very compromised in certain areas especially mental and emotional. I keep waiting to feel normal, not sure if it’s an available option. Have you found there’s a normal after RAI when your replacement is calibrated right?

[beach45]

#1182641

Hi Raspberry! Thanks! It is nice to be posting here again. It’s been a rough ride and I’m still trying to work out this whole post RAI getting to balance thing. Yes more research does need to be done which is how things will get changed in time. So many people have been figuring out that the FT4 and FT3 testing even post RAI or TT is very valuable and as indicators of how they feel; I know; if my FT3 is higher up in the lab value range, I feel great and I can lose the weight like a normal person can with diet and exercise; no have not gotten to that perfect spot. I can go higher on thyroid hormone, and feel better yet I gain weight either on too much T4 or T3. If I have less and like this past January I started losing a little weight, I feel like I’m so drained and cannot get out of bed. I do believe though from all my charting pre and post RAI that yes if it is calibrated right for the individual, that everything can fall back into place. Some people swear by NDTs (natural thyroid hormone); yet there again that can be tricky business just like with dosing T3; also the adrenals have to be watched. I’m sorry that your treatment results appears good on paper yet you don’t feel that great; I had that on ATDs; in some ways I had worse problems believe it or not on that side of the fence; the smallest of change in dosage I’d either be down in the dungeon hypothyroid and depressed, or too elevated as far as feeling hyper. There was not an easy way to get me to balance; maybe why I’m having problems on this side of the fence too; I see a couple of special doctors and no one has gotten things spot on and I feel that a couple things I did the first half of this year made things worse; I’m not getting any answers; yet I’m working it; I know there is a way to achieve balance as I have seen others do it; yet with efffort. As I recall, even on ATD Methimazole, my TSH never really came up much and my endocrinologist(s) looked to the FT4 and FT3 more; they said well we will use a TSH test as indicator post RAI once you get level; that never happened and I moved on to my regular doctor. My four endocrinologists and especially the last one said once you are regulated you can move on to a regular MD. Which I did. They helped me through what I needed help with; now I need to figure out where to go next as it almost seems the hormone I am now on is not even getting into my cells; yet when I do I will let everyone know that I had success. Yes I do believe the antibodies are still there yet right now mine are under control at least on a blood test of not too long ago. Best of luck Raspberry and appreciate yours and everyone’s input!

[JEH]

#1182642

I would get a second opinion. My Graves doc in San Francisco has been doing thyroids for 40 years. He was called in from Bethesda to consult when George HW and Barbara Bush both developed Graves when they were in the White House. He does not consider TSH to be that important in the scheme of things, relying much more on other blood work, including free T3, T4, etc. I’m should you can find someone in your area who might have a similar philosophy. Or you can contact Nathan Becker MD in SF for a referral, 415-681-0695.

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