[spenanelson]

in reply to: 6 weeks pregnant low TSH #1174634

Debbie – thank you! This has been such a blessing and a roller coaster ride – all at the same time. But we are here… still in the game. I just can’t wait for my ultrasound on monday!!

My endo visit went, well not that great at first but ended better than I thought it was going to be. I saw the PA even though I made a fuss about not seeing her, and she was going to lower my synthroid from 137 to 112, test in 6 weeks and come back in 12 weeks. But the doctor can in and reviewed my chart and said that I was right where he wanted me to be and said not to change my dosage, he wanted me to have blood work over 4 weeks and he wanted to see me every 8 weeks.

And his staff wonders why I wanted to see him and not his PA. We also discussed the issues I have with his office and their failure to return calls, the fact that they loss lab results and that they do not pass along messages to the doctor. He told me that they have since let that person go and reassured me that this would no longer happen. And his PA gave me her cell phone number.

I see that as a victory!

[spenanelson]

in reply to: 6 weeks pregnant low TSH #1174632

Kimberly,

thank you for the link! I did talk to my reproductive endocrinologist and he said that he would prefer me that number to be too low at this point than too high but I will let my Endo make that call tomorrow.

S…

[spenanelson]

in reply to: Well, here goes! #1173517

Wishing you the best of luck with your journey! We have all been there and are here for you now.

Take care and keep posting.

[spenanelson]

in reply to: My thyroid grew back! #1173981

I too had my thyroid come back several years after RAI! They said it was not probable but was possible. My did not come back as normal size and texture and we did another RAI. It took about 12 weeks before I hit bottom and when I did it was not pretty. One day I woke up and could barely move. Then it was back to synthroid and back on the roller-coaster.

What I was told is that if there is even one cell left after surgery or RAI, there is a chance it can come back. But that chance is so rare that the majority of people will not experience that.

So, at least I know of someone else know that has had the same experience as I did! I see it as a very exclusive club of very extraordinary people.

[spenanelson]

in reply to: Please explain how hyperthyroidism can return after RAI #1174030

I am that rare case where my thyroid did come back 4 years later and it was pissed at me. I tried PTU and it only made it worse and grew at an even faster rate. Plus the PTU did a number on my liver and white blood cells. I had no choice but to do RAI for a second stronger dosage. I still worry when my labs are off and I have annual ultrasounds to monitor my non existent thyroid.

I wanted to manage my GD with out the second RAI. And I fought it tooth and nail. It is still a struggle but the long term affects of being hyper are far greater than the struggles with being hypo.

Best of luck to you. I know it is rough. But I LOVE your broom analogy. I have to share that with my husband and family. They all think I am NUTS.

Good luck!

[spenanelson]

in reply to: ~ gatorgirly please come in … Propranolol ~~ #1173910

I have a feeling that you will be just fine! Keep the faith and keep fighting.

[spenanelson]

in reply to: Chronic joint pain #1174026

I had the same thing. So I found a really good massage therapist who practices deep tissue massage with a focus on Thai techniques. He has really helped me even though it was amazing painful and bruising until my body adjusted. I just had a large amount of scare tissue and overall soft tissue issues due to years of non treated pain. Oh… And a spinal fusion and degerative disk disease.

as a testament to his work… I used to take 800mg of ibuprofen 4–6 times a day for pain and i could not even tie my shoes. Now, I only take ibuprofen for the occasional sinus headache and never more than 4 a week. And I can wear heals and tie my shoes with ease.

If you can’t find a massage therapist, you should alway stretch. Yoga is also great. As long as your doctor has said there is no major structural issues that would keep you from it. Even with my fusion and other issues, I can do all the things someone half my age because of this.

Take care and good luck!

[spenanelson]

in reply to: ~ gatorgirly please come in … Propranolol ~~ #1173908

Gatorgirly,

I feel for you. I was on propranolol for about two years 50mcg twice a day. I has a resting heart rate of 120 and it would spike horribly.

After my RAI, it finally went back to somewhat normal and would hover in the low to mid 80’s. About two years ago I had a major heart rate spike that lasted for about an hour and keep happening over the next few days until I was able to see my doctor. I too had an EKG and it came back slightly irregular but not worrisome to Amy GP. he put me on metropolo until I could get into to see my cardiologist. After two 48 hour monitors, stress test, and lot of other high tech heart scans, I was diagnosed with innapropirate sinus tachycardia. Which means they don’t really have a clue other than my wiring in my heart is off.

I now see an electro physiologist/ cardiologist. They think this was caused my the long term high heart rate that I had while myGraves was uncontrolled. It’s just one of those bad behaviors that my body learned.

I now take metropol twice a day and cardizem twice a day. And it seems to work. Every once in a while I have a really low heart rate and some days i can feel it trying to spike. My heart is still very sensitive to my thyroid levels. So we have to constantly manage it.

The good news is that we can adjust to what our body throws at us. I did start to walk and this really helped. I don’t walk fast but it’s like I’m retraining my heart to work properly.

Don’t let this get you down. Communicate with your doctors. Never let them settle with a non comittle diagnoses. Once you know that you are in control of your health, you will feel better. The stress of the unknown only makes it worse. Don’t get me wrong… I still freak out. But I know what my body is doing and I know it will pass and if not, I take a second pill and call my doctor if needed. Oh… Make sure you cut out caffeine- the slightest amounts sets me off.

Hope you feel better soon. You are no alone.

[spenanelson]

in reply to: labs – frustrated and stressed #1173803

Thank you for the well wishes. I am sure it’s just the beginning of this journey.

[spenanelson]

in reply to: labs – frustrated and stressed #1173801

Have to share… Got a call from my endo’s nurse that said ” dr. Xyz reviewed your labs and they are normal so no change.”. He reviewed my original numbers and ignored or simply was not given all the other information about the ivf. He is reportedly the best endo in town. The doctors doctor. If miney were no objcet and had no insurance doctor. Went to Yale , interned at the best of the best hospitals. But can’t seem to understand that my numbers were not okay for the all my other doctors. The original numbers were not okay for ivf.

It may be time for me to find the second or even third best endo in town.

Well that is all behind me now.

[spenanelson]

in reply to: labs – frustrated and stressed #1173799

Debbie,

Thank you so very much! I will take all the prayers and good wishes I can get. I know that my journey is not unique – especially in this community – but it does not make any less difficult to live.

I am looking forward to sharing all my success here sometime really soon.

I am just happy to be a part of a select groups of very strong people!

Thanks again.

ps: I am officially on the “high” of my journey. I love everyone and every thing. lol!

[spenanelson]

in reply to: labs – frustrated and stressed #1173797

I did get the news that I was looking for. Yes T4 can be high on BCP due to the increase in estrogen. And my RE looked at my labs and said that I was cleared for IVF! So I go in on Thursday for sonogram and Estradol test and then I should start my shots on Friday.

I can not believe this day is finally here. I know that it is going to be along journey and I have to hope that my thyroid levels play fair. 10 years of infertility probably due to Graves and its related issues. Even if we are not successful I can at least say that we tried.

Thanks for all the help and support. I do not know what I would do with your the support of this board.

Stephanie

[spenanelson]

in reply to: labs – frustrated and stressed #1173795

Update…

So last week they ran new labs at 7 weeks post new dosage.

they came backed mixed again! I just got my results 30 min ago.

TSH: 2.1 Range .4-4.5
T4 14.7 Range: 4.4-12.4
T3 26.5 Range: 20-38.5
(forgot to get fT4)

So my TSH is in range for IVF – needed to be .4-2.0, but my T4 is high. Is this bad? will I ever have normal labs again? Could birth control pills cause issues? I have even changed how I take my levoxyl again (4am on an empty stomach with out any other meds).

And for getting pregnant, is the TSH the number to be concerned with or is there still a greater risk for miscarriage with a high T4?

I am hoping to start my shots on Friday and I still waiting on the RE to call with his decision.

[spenanelson]

in reply to: anyone have abnormal liver enzymes with methimazole? #1173928

I know that PTU can have that side effect. I was on it for a 6 months but when we saw that my thyroid related numbers were not under control and my liver numbers were high, the doctors convinced me to have a second round of RAI.

I know the RAI or surgery are not for everyone, but if you are having liver issues you may want to talk to your doctor about other options. I know that I did not want to have the second RAI and thought that anti-thyroid drugs would be the better option. But in the end I am happy with my decision.

Best of luck.

[spenanelson]

in reply to: labs – frustrated and stressed #1173793

So my lab uses the range for tsh at .4 -4.5

So I am in “normal range”.

But my RE want it to be in the range of 0.4-2.5. So I’m in normal range for regular management but not for IVF. so my RE is reviewing my numbers to see if he is comfortable with proceeding. But he is on vacation till Monday.

I now have so many questions and I’m hoping that next week I can get answers. I have an appointment with my general to go over all my results. But I’m still wondering if it is better to have a high fT4 over a lower TSH when it comes to pregnancy . this has always been my challenge with my labs since the second RAI. It has rarely been on the low end of the labs.

more than likely I will have to wait another 6 weeks on the IVF.

Thank you for listening and offer such great words of comfort and advice.

[Author]

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