[ewmb]

#1059558

Short backstory- Graves patient RAI in 2009 finally settled on 100 mcg levoxyl for several years. Pretty sure I am going into menopause. Gained lots of weight in the last six months, have gone through several years of hot flashes off and on, no periods for 8 months, breast changes every month gone.Feeling hypo had blood work done in time to get new script for the next year.

TSH came back high, T3 uptake not high but closer to the top of the range than not, Free thyroxine Index came back high and T4 came back marked high. Not sure what to make of this. TSH to me indicates hypoish and the other numbers seem to indicate too much hormone in my system? If anyone can explain this to me I would appreciate it a lot. I have been released to my GP for my medication management and am not sure what he will make of this when I have my appointment next week. I am not sure if I should be tweaking my medication dose or not.

[beach45]

#1175727

EWMB,

I am finding from my own research that TSH is not necessarily the best indicator. Even an MD (endocrinologist) said this in a talk I viewed in the last year yet things have not changed yet as not enough research done.

I believe like for myself, if my FT3 is not right where it needs to be for me I am still feeling hypo and I don’t care if my TSH is low and out of range right now. Because I go by my symptoms not by the numbers. Sometimes Synthetic T4 alone does not do the job for everyone and sometimes too much T4 in the system can be a problem. I only say this now from my own experiences and talking with others who have similar.

I am slowly getting my numbers where I need to be and I am seeing the “menopausal” symptoms I had like the hot flashes and mood swings, etc., are slowly fading. Not the weight issue though and not the joint pain yet I think in time I will get this better under control. I will be going soon to my Internist who also is agreeable for me to see a “DO” who is also part of that medical practice who I know has helped some with thryoid imbalance. Plus I am finding going into menopause too at the same time with fighting with this post RAI thing myself, I may be struggling more than others. I’ve compared notes with those who had RAI way before menopause and ones post menopausal and some of them did better than I; yet we are all very different. This Graves journey is not the same for everyone and it is important to find a physician who will work with you especially if you are having issues other than maybe some others and thorough testing and monitoring and sometimes thinking outside the box is what is needed; these are only my opinions though with much research talking with various medical professionals, reading a lot of medical journals and listening to others experiences over 2-1/2 years now on this Graves journey myself; you may need some tweaking! Good Luck with this!

[ewmb]

#1175728

Thanks for your story. I am glad to hear about other’s experiences. I am still not sure which numbers I should be paying more attention to at this point. The last time, a year ago, I had tests done they ran tsh and two different measures so I can’t really compare them.

Do the numbers for the T4 and T3 uptake being high mean that I am not processing the T4 to T3 well enough? Would that make me feel hypo symptoms?

If that’s so what do I do about that medication wise?

Which books, articles etc. have you found most helpful and insightful? I gave all my hyper books to a friend several years ago and he did not return them. I have. few hypo books but they have not been very helpful.

[Naisly]

#1175729

ewmb
beach45 is correct when she said TSH is not a good indicator for your levels. What you want to look for is Free T4(FT4) and Free T3(FT3) – Not Total, or uptake, they can be misleading. If my computer wasn’t broken, I would reference this for you, but I’m currently using my partners.

I wrote a small explanation here –

http://www.gdatf.org/forum/topic/43090/?page=1

Kimberly also has an article from this site explaining labs I believe.

If you don’t have those results then when you see your dr next week, ask him to give you a copy and talk to him about dosage. If your FT4 is low, you are hypo. But make sure he isn’t dosing you just for your TSH. There are tons of articles out there about this subject. ATA has a few as well. Just sometimes GP’s don’t keep updated on all the diseases, so it’s not his fault if he doesn’t understand (if that was the case with you).

Hope this helps,

~Naisly

[ewmb]

#1175730

Thanks for the help. I have not had the appt. with GP yet. I have the lab values. T4 12.8 top is 12.5 on this lab. T3 uptake 31.2 top is 37% on this lab. Free thyroxine index 4.0 3.9 is top on this lab. TSH 4.633 4.5 is top on this lab. So I am not way over on any of these values but still can’t figure this out. I read your link but I am post ablation so did not think it applied to me too much.

I am probably going to ask for the GP to consult with the endo just to make sure what we should do regarding medication changes. My GP is great. He was the one who guessed thyroid issues in 2007 when I was really ill. I like him a lot since he is willing to say I don’t know and I am not sure. If you can find that article from Kimberly please post it. I tried a search but nothing came up that seemed to fit.

[beach45]

#1175731

EWMB,

Well I am not a doctor yet I am someone who can analyze my situation and for me I know that I am not converting well from T4 to T3. Which is why I personally did not want to do either RAI or TT because I know my body well after 53 years and that I am not surprised that I am having problems with just Sythroid alone now 7 months post RAI.

Since your circumstances changed with you seeming to be going into menopause, it is possible that you need to have your medication tweaked. The test that I am familiar with are the FT3 and FT4 tests which I was told are the best indicators; along with TSH testing of course.

I found this comment yet for some reason I could not find the New England Journal of Medicine Article yet somewhere here it was posted in past: “Although the predominant treatment is T4, some medical practitioners question the value of T4-only treatment. In fact, a New England Journal of Medicine article reinforced the significance of T3 in treating hypothyroidism, which lends support to practitioners’ concerns.”

To me there has not been enough studies of this; from my own experiences though and talking with some others with similar some do have this T4 to T3 coversion issue which can arise due to certain circumstances and it seems as though your circumstances has changed. The endocrine system is very sensitive. True that T3 can fluctuate a lot too and testing of it should be consistent. A lot of doctors do not even test that; only TSH some and some both TSH and (T4 or FT4).

I do not want to post other stuff I found as I am very careful what I post here. Plus this thryoid business is not a one size fits all ordeal as I am finding out and finding out from also talking with others.

Naisly has an excellent explanation there in her link. I am sure in time that with more research, if there will be because my endo has told me that not much research has been done on Graves in the last 10 years and he works for the Medical University by me, that it will come out that more people are having problems post RAI or TT with conversion problems; and it may not happen initially yet sometimes could change years after being on T4 alone. Depends on changing circumstances and I do know also our bodies change every 7 years. If you look in the book store on Hypothyroidism or Graves there are a few books yet there are varying opinions on the subject. Remember too wherever you numbers end up in the lab ranges may not be right for you as far as you feel yet maybe be just fine for another person. Why I kept a log of all my blood work and results and symptoms on my TSH, FT3 and FT4 while on Methimazole 23-24 months and then post RAI almost 3 months on Synthroid; because I can see where my numbers need to be; yet this is a very sensitive thing just like Naisly said in the comments in her link that T3 can fluctuate. Hope you get the doctor to work with you to get the right testing and figure out why you are feeling hypo…beach

[mvk]

#1175732

Hi Beach45,

I needed to hear what you just said. I think I may be one of those people and my endo isn’t even testing my free T3. Always just the TSH and free T4 testing. I felt better for a while when I went up to .175 Levo and then right back to where I was before. I’ve been trying to ignore it frankly. I just get so tired of feeling like crap. Any clues on how to approach the endo on testing my freeT3? I already know she doesn’t think it is necessary. Also, if anyone can give me some thoughts on what OTC products are helping with the dry eye problem. I’ve been using CVS extra strength drops and the gel ointment at night. I don’t think they have been very effective. I am eating as healthy as I possibly can. Also taking a selenium supplement which is supposed to help and I upped my fish oil supplement as it is supposed to help with inflammation. Thanks for any and all help.

mvk

[beach45]

#1175733

MVK,

I am finding a lot of people on T4 alone just settling! I am talking those too who have not only been on it short while yet long term. Balance is key and working with a very good doctor as I am also finding a lot of doctors are not willing to work thoroughly with the patient with thyroid as they either do not know or they just do not have the time. Yes there are people who do very well on T4 alone and I am not saying that this is for everyone as I want to make that clear to all. It is just that what you just said here is what happened to me; I felt well for a little bit on the increase of Synthroid and now I’m back to lousy; there are some theories on why yet I won’t share that here. My indicator is that I have a higher FT4 yet my FT3 is not budging much and it was not like that in past. When both were in the range just over middle together this is where I felt best. For me off and on in my lifetime I had a very low TSH and I felt just fine. Yet again everyone is different. When I feel better working with a doctor who listens to me and gets me to where I need to feel, I am going to make my voice heard. It is wonderful when people have no problems post RAI or TT with their medication yet there are many out there who are afraid to have their voices heard and just settling for symptoms. If I cannot get my doctor to work with me to test my FT3 then I plan to move on. I had to ask my endo this time around to test it as we have had a very interesting relationship in the past year together and I speak my mind because it is my health not theirs and you have to be your own health care advocate. Problem is that it is true that FT3 flutuates yet so does TSH. My TSH has been around the world and back and it does not go by what they say as far as levels because it has lagged always behind my FT4 and FT3 levels changing. If you have good health insurance, there is no reason why you cannot have it tested, the FT3 that is. A lot of endos and doctors do not think it is necessary. I believe in time, and maybe not in my time, things are going to change with treatment for pre or post Graves treatment yet it is going to take more research and time; because there is not enough research out there on the benefits of added T3 for patients post RAI or TT yet I know there is a newer timed released T3 out there somehwere in Europe. I printed that medical article for my endo too and he disregarded it saying we are not doing that in the US here just yet; not enough research! I use Refresh Optive, Lubricant Eye Drops and they work well with my Moderate TED. So far, thank God and I hope it continues, that my eyes actually seem better post RAI. Yet time will tell as my thyroid eye doctor said those antibodies are active at least 3-5 years post RAI. The supplements sound good as I take fish oil yet I was told caution with extra selenium even though I heard it was very good and I started eating 1 brazil nut a day as that is packed with selenium. I am sure in time more will be revealed. I wish you much luck and if you ever want to talk on messaging too!…beach

[Jules]

#1175734

You will find that MOST GP’s and a lot of the endos will only test the tsh and t-4 with no regards to the free t4 and free t3. I have actually started to request specific testing with the LAB’s own numbers when my GP decides that it is time to do blood work.

The reason is:

At first they were only testing TSH which was stating near normal. However I still felt crappy. Then he added in the t4 test and the TSH for women how are expecting! I have never had a child and at 49 years I don’t expect to start having them.

Anyways I started questioning him as to why everytime he tested my blood the test was never the same TEST! I finall found some old blood work my endo did back when I was first DX with graves. I gave those lab orders and the corosponding lab DX codes and lab numbers for requesting the test to my GP and he is finally ordering the correct test.

What happened for me: (I do not recommend this method unless you are willing to accept the out come as your own!!!)

The TSH was low below range so my GP wanted to decrease my Meds said I was hyper. I told him nope I don’t feel hyper. I refused to lower my Meds. Then he ran t4 and it was showing in range. However I still felt hypo. He was stating you are not to change your Meds every thing is perfect. Well since I know my own body and it was craving Meds by shaking violently until I took my Meds in the morning. So I decided to add 1/4 tablet and get blood work in 6 weeks.

Of course the test for TSH came back really low, and the t4 was actuall on the low side. I deduced that this was making me feel better and the doc was seen significant changes in my mood skin etc…

Then when my body started shaking again I again added more thyroid Meds retested. Because what I was doing was actually making my doctor see that I was doing better. He wanted me to stop because of the TSH. I made a deal with him, that if he would test the FREE T4 and FREE T3 and they showed my in the hypo range I would listen to him, however if I was correct and my frees were in the normal range. He would allow me to keep on my current med track.

Well he finally has given in tested for the frees and has seen the results. The TSH is non existent the frees are perfect and I could bearly tell I have a thyroid issue.

Also a side note. I have extream TED in my right eye. Let me clarify that I HAD extream TED. I had the orbital Decompression to fix the area. However now that I am in the upper limit of the FREE T3 & 4 my muscles have actually receded back to normal size. THIS IS A NEW DISCOVERY and not to be taken as a gold standard, (this might not happen to you )however they are starting to look at scan and test to see why my eye Muscles have receded.

So just a note THYROID issues are in the very begining of being understood, now that we have never technology for testing. Hang in there. If you do not feel well I suggest you stay on top of your doctor to figure out what’s wrong.

[Jules]

#1175735

Let me add that over the course of 2 years it has taken me to get my Meds almost to that sweet spot.

My last blood draw when the doc requested the blood test I requested he order. He could see that my frees were totally within range and my TSH was non existent.

Usually extream low TSH registers a doc to check for hyper thyroid. However my theory is this. If our thyroid is removed by RAI or surgery the TSH is reading our Meds we are taking, not the actual blood and what is in there for our bodies to use.

M method is working for ME. Does not mean it will work for you. However there is a chance to discuss this with you GP if they are willing to hear you out.

[snelsen]

#1175736

ewmb wrote:

Thanks for the help. I have not had the appt. with GP yet. I have the lab values. T4 12.8 top is 12.5 on this lab. T3 uptake 31.2 top is 37% on this lab. Free thyroxine index 4.0 3.9 is top on this lab. TSH 4.633 4.5 is top on this lab. So I am not way over on any of these values but still can’t figure this out. I read your link but I am post ablation so did not think it applied to me too much. “

Hi ewmb, you are right, the values are pretty much ok. Sounds like you have a marvelous GP. That is so great. I am glad you will see him soon.

I am thinking, because you are in the middle of menopause, that much of what you are feeling and experiencing can be menopause related. Menopause can be very difficult for some women, and weight gain, frequently goes with the territory.
It is really easy to attribute weight gain to hypo, and there is that correlation for most people. But it is very hard to tease this all apart when experiencing menopause. Not sure what you mean when you say you feel hypo, does this apply to feeling more tired now and then, and is this a lot different for you?
Or are you sleeping less well, because of hot flashes, etc.

I am sure you will not tweak your med by yourself, and that you mean working with you doc, but it is wise to do that with your doc.

If you/GP/endo decide to increase your thyroid hormone, remember that it takes a long time, at least three months, to have much of any idea if it has made a difference, and for the labs to reflect it. YOu may notice that you feel better, and that is the first hint that this might be the right thing to do.
Remember, that before all the graves’ business, and for most people on the planet, our bodies do the job of regulating the right amount of hormone for us. HAVING SAID THAT, there a ton of women, who as time goes by, in their late 30’2 40’s 50’s, get a little hypo, and end up needing and taking thyroid hormone.
The best of the best to you, and do write again!
Shirley

[Kimberly]

#1175737

Hello – I’m thinking that maybe the article mentioned was the ATA/AACE Medical guidance that is in the “Treatment Options” thread in the announcements section at the beginning of the forum?

The advice in that document is more geared to not using TSH as a benchmark for dosing post-RAI because it can remain *suppressed*. It sounds like having an endo review this latest set of labs before transferring over to your GP for future monitoring is a good idea.

Take care!

[ewmb]

#1175738

Thanks all for the help. As to Shirley’s questions about menopause I actually feel much better with those symptoms like hot flashes etc. than I did over the last three years. I know that at 49 I might be an early bird to menopause. I know that the weight gain and the tiredness and not wanting to wake up and the cycling with constipation is worse over the last six months. The hot flashes seemed to have stopped and my Nurse practioner who does my breast exams said I felt menopausal. I have always had very lumpy breasts and felt pain in my monthly cycles and that is all gone. I hope that the GP will do my FSH, folicle stimulating hormone levels. I had them done in 2009 and they were high but the endo I saw then said that could be a false high with my graves being active at that time. I am functional but not comfortable in my new body. I also have an appt. with a gyn. in a week or so. If I learn anything brilliant I will share it here. I am really grateful to have a place to chat with confidence about thyroid issues.

[ewmb]

#1175739

Just following up. GP says let’s raise levoxyl to 112 from 110 mcg since the TSH is high. He wasn’t worried about the T4 being high and we did not have a T3 # to look at so we’ll see. I go and pick up the new prescription today. The GYN says that I am on the down side of the worst of the peri-menopause. This means that I probably did go through the worst of it when really hyper in the past several years.:rolleyes:

We’ll see in 6 to 12 weeks how the dose change works. I am very sensitive to changes in meds so not looking forward to this but it may be the right thing to do.

ewmb

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