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Hello All,

I just thought I'd join this site because sometimes you just need to hear from people who know exactly what you are going through! Thanks in advance for reading my long post as I am reaching out because I am feeling very discouraged right now :(

My family has a history of endocrine issues. In particular my mother and my son (only 14 at the time) both had hyperparathyroidism.

I have a history of 2 rare autoimmune skin disorders.

Late 2009/early 2010 I came down with what I thought was a virus and I felt like I had the flu but with no fever. Body aches, joint/muscle pain, fatigue and an over 30# weight gain in less than 2 years (I'm a small frame, 4'11'' lady). After many months of lingering symptoms, blood tests, various doctors and many many offers of pain killers, anti-depressants and a fibromyalgia diagnosis, I almost gave up. Finally March 2014, with one more blood test showing my TSH was just above normal (I kept telling my doctors, I'm sure it's endocrine related!) My GP agreed to start me on a dose of Levothyroxine. Well, other than having to change to the brand name due to continuing hair loss, I can honestly say, this drug saved my life! I was able to feel normal and start exercising again and I lost all the weight I had gained and then some. I was so happy. My blood work was checked every few months and it was always "normal". A TSH of around 1. GP did not check for Free T3. Feeling great for 2 years.

So then, this past spring, my right eye started bulging and I was finally sent to an Endo. THS - off the charts low and FT3/FT4 were all above normal. She tested for Graves and sure enough I had it. I did not have other hyper symptoms.

I was taken off of my beloved Synthroid and put on Methimazole. I started feeling hypo as my hormone levels decreased but the TSH was still off the charts low (I guess it takes a long time to change) I was very unhappy and not feeling too well. My other eye showed signs of a retracting lid and I had occasional double vision and diminished vision in the right eye. I started to panic about my eyes even though the eye doctors did not seem too worried. Telling me that I can have surgery on my eyes if it gets worse! What?!

I started to research options for treatment. From what I could tell from reading many studies, TT was the way to go to get Graves Eye under control. The Endo mentioned I might need surgery in the future (I think she wanted to see what the meds did first). I told her I had a wonderful surgeon in mind that operated on my son and I would like to consult him. I wanted to get off the Methimazole (did it for about 5 months) and go back on the medicine that I knew worked so well for me. The surgeons office admitted they were biased towards surgery but told me it is easier to regulate the hormones once I have the thyroid out. They had an opening the next week so I jumped in and had a TT, Aug 2, 2016. I wish I had researched life after a TT a bit more because even though I actually know a few people who have had TTs that are fine, I did not realize so many are not fine!

I started on Synthroid about 4 days after surgery - 88mcg. My first test Sep.14 showed a TSH of 9.01 - (range 0.27-4.20) Free T4 - 1.0 - (range 0.1-1.7) Free T3 1.6 - (range 2.0-4.4) So because of the high tsh and low T3 my endo upped my T4 meds to 112mcg. I thought I would feel better but I swear I feel worse! I am going down hill fast with tremendous body aches and pains, fatigue and I am hanging on to my weight with dear life (gained a few lbs) by eating 1200 cal. a day.

I just had blood work done Oct. 31st. TSH is now 0.93 (0.27-4.20) Free T4 1.3 (0.1-1.7), Free T3 1.9 (2.0-4.4)

As you can see, the Free T3 was not getting much better and is still below normal. I did not seem to have any conversion problems before surgery - as in when FreeT4 was up Free T3 was not far behind. I asked the Endo about T3 early on after doing some research while recuperating from the surgery. At first she said "I don't think you have a conversion problem and I don't usually prescribe T3 medicine". Well, after this last blood test, she agreed to add a small dose (5mcg a day) of generic T3. Thank God she was at least reasonable! She did not lower the T4. I am only 2 days into the new meds and have not noticed anything yet lol. I hope this works for me but I want to know what if any, tips you all could give me to get me feeling close to normal again? Do my numbers indicate I have a serious problem or is this typical for after a TT? I am honestly starting to get very depressed feeling like I did the wrong thing and I am crushed that I was doing so well and now the rug has been ripped out from under me. My poor husband watched me go from near suicidal to changing my life for the better and all was well and now back to feeling dreadful again! This is crazy. Sorry for the long post but I don't know anyone who understands how hard this is. Please tell me there is hope!
 

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Well, if you had surgery in August, keep in mind you are still really, really early in the process (see my signature for evidence of that). It can take up to 18 months to feel normal after surgery.

Which probably sounds really discouraging, but please know I think you made the right choice. Long term, its going to be a good decision. It will just take some time. Give the T3 (which you SORELY needed) and reassess in six weeks.

You'll get there!
 
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Discussion Starter · #3 ·
Wow thank you for responding so quickly! My doctor seems to want to test monthly but I usually wait another week to split the difference. As much as I'm reading now, there are so many folks out there that have had doctors not listening that there is now advocacy for people like us. I count myself lucky that my doctor was willing to try something different than she normally does. I will make a signature and update my labs after the next blood test to get everyones opinion. Glad to know that things should get better!

Thanks again :)
 

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I am a newbie too! My surgery was in August. Until this summer when my thyroid was suddenly found to be enlarged, I had no idea I had thyroid issues. From this discovery to a full thyroidectomy was not very long!

I am still working myself to get my meds balanced. I felt low for weeks after surgery then I was actually hyper for a few weeks now it's balancing out more. It definitely is a process! And one that I have had to become educated in myself to be my own advocate. I ask for the labs I want, I have switched doctors, and am probably going to switch my endo. THESE FORUMS and the amazing people here have helped me more than I can possibly say. I even know now that my lab work prior to surgery, which my dr called "normal" at the time, was not and I was suffering hypothyroidism (and another dr recently determined adrenal issues too).

Keep listening to your body, reading here and advocating for yourself! And you are definitely not alone!
 

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Well, after this last blood test, she agreed to add a small dose (5mcg a day) of generic T3. Thank God she was at least reasonable! She did not lower the T4. I am only 2 days into the new meds and have not noticed anything yet lol. I hope this works for me but I want to know what if any, tips you all could give me to get me feeling close to normal again?
Do my numbers indicate I have a serious problem or is this typical for after a TT?
Your labs clearly indicate that your body is not converting your T4 hormone replacement properly. This is common after completely removing your thyroid. Some people convert - some people do not. I for one do not and until I added Cytomel I did not feel my best. You may try splitting your dose and taking 6 hours apart as the 1/2 life on this med is short and rather than giving your system one boost - split the dose.

Normally one reduces T-4 medication and since your FT-4 was in a good place it may bump up a bit because of adding the Cytomel.

Goal is to land in the 1/2-3/4 of range for both FT-4 and FT-3.

Be consistent when taking your labs - same time everyday and if in the morning, before you take any replacement dose. I have recently ( after 12 years) begun taking my labs 7 hours post first Cytomel dose, to see where I am mid day. Interestingly enough - I landed exactly 3/4 of range for both FT-4 and FT-3 which is where I believe I should be. Morning tests should likely be closer to the 1/2 range for both.
 
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Discussion Starter · #6 ·
Thank you Sabrina and Lovlkn! I am so happy to have found this board and know that I am not alone. I am not really feeling too much different yet but it's only been a week and I am trying to stay positive. I guess I was ignorant in the fact that so many are not happy after their TT or at least it is not a walk in the park as the doctors make it out to be. I am hoping that since my endo was willing to at least listen to me (via a messaging system since no appt until Jan. due to shortage of endos). I know that I have to be patient but like I said, I did more research on the best treatment for Graves which is what I was dealing with rather than post TT stories. I will def update again soon and get perspectives from you all - people who have been there!
 
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