# 6 weeks post TT and not feeling well



## Gam87 (Feb 5, 2011)

Hi all... It has been a long time since I posted. You all were such a help to me telling me that having TSI antibodies is not "normal". I was diagnosed with Graves in Sept. I opted for a TT after a few months on methimazole. My surgery was 6 weeks ago. I was put on 88mcg of synthroid right after surgery. 4 weeks post op I wasn't feeling worse, had some decent days sprinkled in, but not feeling great. Had labs done at 4 wks and my TSH was 6.17, FT4 was 1.0 (.8-1.8) and my total T3 was .8 (.8-2.0). My endo increased to 100mcg. I am feeling just lousy... Tired, achy, depressed, anxiety. My endo will not order the FT3 so I went ahead and ordered it myself through mymedlab.com and am awaiting those results. I called the doctor in the meantime and asked if I could increase to 112. She said yes but she didn't want to go any higher without further labs. I am 5'7 and weigh 145 lbs so it seems like 112 should be the minimum. My question is... Do my symptoms make sense with my labs? How long does it generally take to find the right dose. I just felt so poorly before the surgery I was hoping that by now I would be back to my old self. Also... They did find a small papillary cancer in there as well. But my endo says nothing else needs to be done. It was less than 1 cm. does that sound right.. No followup, scans, etc?


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## joplin1975 (Jul 21, 2011)

Because you had Grave's, they might have been wanting to start you low and slow, since your body was already hyper. But, clearly, you are undermedicated. So if I'm reading that right, you've been on 112 for two weeks? Do you feel any improvement or do you feel worse?

It's hard to say what to do until those free t3 results come in. Is you doctor opposed to Cytomel? If so, it might make sense to do a little doctor shopping.

You should have Tg and TgAB run annually for the cancer monitoring. You probably don't need scans and such, but regular blood work would make a lot of sense.


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## Gam87 (Feb 5, 2011)

Thanks so much! Yes I think going slow was her plan and that does make total sense. I guess I am just not patient enough. I have been on 100 mcg for 2 weeks. She increased from 88 after those last labs. I called yesterday and got the bump up to 112 and I took the first one this morning. Once I get those free t3 results I will post and see what you all think. I think she is open to adding in some T3 but she wants to give it some more time. Thanks for the info on the TG and TGAb tests.


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## Lovlkn (Dec 20, 2009)

It is a good thing you ordered the FT-3 which will confirm how you are converting.

Do you take your med's prior to the draw? I never take med's prior to the draw which I try to have around 8:30 a.m. everytime I have labs. Be consistent - it helps when dialing in replacement medications.

It took me several doctors prior to finding one who would treat me properly. I went to my current doctor on the medications I am still taking today - sometimes it's easier to show up to a new doctor when the old one wants to cut medications. It worked for me and I have been properly medicated for years now. I went in armed with medical studies as to why and blablabla and I don't run TSH but the doctor is cool with that because my FT-4 and FT-3 are never over 3/4 of the range nor at the top of range.

Be sure to also fill refills on all doses you have prescriptions for during this replacement dial in period. Better to have too many and toss them when you are finally regulated to 3/4 of range for both FT-4 and FT-3 than to have to fight for refill's when you are doctor shopping.

Did your doctor mention anything about needing to suppress your TSH because of the cancer?


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## Andros (Aug 26, 2009)

You may need a new doctor. When you get your FREE T3 let us know. With TT; many of us do not convert. Not all; but some.

Therefore you are on the right track and you will need T3 augmentation. Even the Total tells us that in your case for there is barely any there.

Goodness; you must feel horrible.

Start looking for a new doc STAT. Try a Naturopathic Doctor or a D.O.. They seem to really "get it."

Hugs,


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## Gam87 (Feb 5, 2011)

Thanks Lovkln.... Some great advice about timing and getting refills. I did take my medicine before the blood draw. Can that skew the results? 
Andros.... Just got my FT3 and it is 2.3 (2.0-4.4) so too low right? I had tsh and ft4 done again and tsh is still 6.1 but FT4 has jumped to 1.41 (.82-1.77). This is 2 weeks on 100mcg. So it looks like I am not converting as you suggested.


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## joplin1975 (Jul 21, 2011)

That free t3 is WAY too low. And, as Lovlkn suggests, you really need that TSH suppressed because of the cancer, even if it was a microcarcinoma.

You are absolutely a candidate for Cytomel or some other kind of t3 supplementation.


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## Gam87 (Feb 5, 2011)

Thanks Joplin! Now to just get my doctor on board. I really, really like her... She is so kind and spends lots of time with me at my appointments...but I am starting to wonder if I need to find someone else. She said I needed to wait on the cytomel until my tsh gets stabilized.... She said that she wants it around 2.5. Nothing was mentioned about suppression for cancer?!?


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## joplin1975 (Jul 21, 2011)

She wants your TSH around 2.5?

Er...I would, if I were in your shoes, prefer it to be lower. Not just because many, many people feel better with the TSH closer to 1.0, but also because of the cancer. Yes, it was a small, incidental cancer finding, but it is possible for those cancer cells to hang around, even after surgery. You might want to look here for TSH suppression guidelines:

http://www.thyca.org/pap-fol/more/tsh-suppression/


In patients with persistent disease, the serum TSH should be maintained below 0.1mU=L indefinitely in the absence of specific contraindications.
In patients who are clinically and biochemically free of disease but who presented with high risk disease, consideration should be given to maintaining TSH suppressive therapy to achieve serum TSH levels of 0.1-0.5mU=L for 5-10 years.
*In patients free of disease, especially those at low risk for recurrence, the serum TSH may be kept within the low normal range (0.3-2mU=L)*.
In patients who have not undergone remnant ablation who are clinically free of disease and have undetectable suppressed serum Tg and normal neck ultrasound, the serum TSH may be allowed to rise to the low normal range (0.3-2mU=L).

I think you are in the low risk category. 2.5 isn't TOO much higher than 2.0, but those little differences do make a difference in my opinion.


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## Gam87 (Feb 5, 2011)

Wow... This is great info! Yes I think 2.5 is too high... Would definitely want it under 2. I just found some great info on the thyca site called the free T guide for those not feeling well post TT. Explains a lot about conversion problems as Andros mentioned in those without thyroids. I definitely feel I need some T3 in the mix!


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## joplin1975 (Jul 21, 2011)

Yes, I've read that and it is a very, very good piece written by a very knowledgeable posters.


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## webster2 (May 19, 2011)

I am not sure why your doctor would consider adding cytomel and not testing the FT3. Your totals are in the basement. How's your vitamin D and ferritin levels?

It took me a long time to feel great after surgery. I had been sick for a really long time before and I am in my 50's. My endo is wonderful. He doesn't routinely test FT3 and FT4 but I have made a good case to have them tested, so we do. Even with the addition of cytomel, my frees are in the bottom half of the range. My take is that must be where my body wants to be; I feel great. I have lost 18 pounds recently. I exercise really hard daily. I work. I don't nod off in the afternoon anymore.

Replacement medication can be tricky and not at all quick to find the correct level. Your numbers make me think you must feel terrible. Do some research. Present your case to your doctor and if it doesn't seem like she is willing to take steps to help you feel better, find a new one. Best wishes to you! I hope you will feel better soon.


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## Gam87 (Feb 5, 2011)

Hi Webster... Yes I feel pretty terrible. But I feel like I understand the problem a bit better now... I am now convinced I do need some T3. I think I have always had a conversion problem. Even before surgery when my ft4 was high my ft3 wAs always low. Even with the Graves diagnosis. You are absolutely right... Why would she consider adding cytomel if she never intends on checking Ft3? That makes no sense. This is all so frustrating! Thank goodness for boards such as this. You all are the best. I need to just keep remembering that it has only been 6 weeks and it will take time!


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## Gam87 (Feb 5, 2011)

Oh and I haven't had any of those others... Vitamin D, ferritin, etc checked in a while. I am usually always low in everything so after surgery I did start supplementing again vitamin d, calcium, magnesium, b12 and iron. I am going to have everything checked again next month and see where I am.


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## webster2 (May 19, 2011)

It is very hard to be patient. I was pretty unhappy that I did not feel well instantly. The cytomel made a huge difference for me. Be kind to yourself and learn as much as you can to advocate in your care plan. Hang in there!


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## Gam87 (Feb 5, 2011)

Thanks so much to you all for helping me ????
Do you think there is any reason why I couldn't start on a small dose of Cytomel right now? I am about 6 weeks post op... Is it too soon to start switching things up?


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## webster2 (May 19, 2011)

You might want to bring that up with your doctor, if she has already mentioned it; she might give it a try. I was very nervous to start taking cytomel, even though my numbers were really low. I was prescribed 10 mcg ( 5mcg 2x a day). I had lived with palpitations for so long before surgery that I did not want to start that up again. I started out with 2.5 mcg a day and when I felt that I tolerated that well, I went to 2.5 twice a day. It took me awhile to get to the whole amount daily. I told my doctor that I was doing this. He was more than okay with it because he always impresses the fact of cardiac and bone troubles with too much replacement and I'm to contact him if something feels off.. During this time, labs were run fairly often; we're up to 6 months now! I also found this experience to be beneficial in developing a good relationship with my endo. He truly is human as the ENT said!

Good luck to you. I hope you will feel better soon.


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## Gam87 (Feb 5, 2011)

Thanks so much Webster! I emailed my doctor today and told her about my FT3 results and asked if I could add a small amount of cytomel to my synthroid. I am thinking that 88 mcg of synthroid and 5 of cytomel might be a good starting point. I'll see what she says.


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## Gam87 (Feb 5, 2011)

Well my doctor agreed to add in some cytomel. She sent in a prescription for 10 mcg. Does that seem kind of high to start? I honestly thought I would start out at 2.5. She wants me to continue on 100 mcg synthroid. I'm kind of nervous.... I really think I need it but I don't want to go too quickly. Last labs again were FT4 1.41 (.82-1.7) FT3 2.3 (2.0-4.4), TT3 .8 (.8-2.0) and tsh 6.11.


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## Gam87 (Feb 5, 2011)

Webster... Just rereading your post that you were also prescribed 10mcg initially but you inched slowly. I think I will try that. How much synthroid do you take as well?


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## webster2 (May 19, 2011)

I take 125 mcg 5 times a week and 112 mcg twice a week along with the cytomel. I didn't have any trouble with the cytomel but I really did it slowly! Heart palpitations were not something I wanted to revisit.

Good luck! I hope it will help!


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