[ColoradoRN]

#1060459

Hello all! I am a Graves sufferer who also happens to have hyperparathyroidism.

In my discussion with the surgeon about removing my parathyroid adenoma, she felt it was a good idea to remove my thyroid while they were operating on my neck. I was diagnosed with Graves a year ago and have not felt good one day since. I’ve had to quit my job so I agreed that I was prepared to do anything to feel better.

I am a member of several Graves Facebook groups as well as the STTM group. I’m concerned that patients don’t seem to feel better on Synthyroid and would like to hear feedback from TT Graves patients and how you are feeling and what medicine made you feel better.

I’m on my 2nd Endo and searching for a 3rd that will treat symptoms and not lab numbers before my surgery date approaches.
Thank you

[Kimberly]

#1182754

Hello and welcome! Hopefully, you will get some additional responses here from our regular posters who have chosen surgery as their treatment option. You might also use the “search posts” feature for topics such as Thyroidectomy, Cytomel, Armour, etc..

We hear very mixed reviews from Graves’ patients who want to pursue Cytomel or Armour. Some feel that it did improve their quality of life, while others felt that the T3/T4 combination therapy brought back their old “hyper” symptoms – and they eventually ended up going back to T4-only therapy with Synthroid, Tirosint, or another similar med.

Take care!

[ColoradoRN]

#1182755

Thank you for your response! I got my last labs yesterday and was surprised to see they were all within normal range.

Is it normal to still feel so bad when labs are normal? Makes me afraid that I won’t feel good even after thyroidectomy.

[Kimberly]

#1182756

Hello – Most patients do start to feel better as labs stabilize. However, some can take longer to recover (especially if it took a long time to receive a correct diagnosis) and others can feel symptomatic as levels are moving up or down, even within the “normal” range.

In still other cases, there might be another underlying condition that is contributing to the symptoms. Hopefully, Endo #3 will end up being the right doctor for you, but a visit with your primary care doc might also be helpful if it’s been a while since you’ve had a complete physical.

[adenure]

#1182757

Hi!

I had my surgery 2 years ago. I’m on Synthroid only (brand name). I take 112 mcg five days a week and 100 mcg twice a week; it is a good combination for me. My TSH is at 1.2 with my free T4 in the upper range of normal and my T3 is finally getting to the upper range of normal! I feel pretty good. I haven’t gained any weight, and I am far healthier now than when I was hyperthyroid. My life is busy- I have 4 boys and I homeschool, so it’s important to me to be well and have energy for my family.

I started on Synthroid 100 mcg after surgery. Six weeks later, my TSH was 6.35 I think, so I was increased to 112 mcg. That actually worked pretty well for awhile, but I ended up having slightly hyperthyroid symptoms. My TSH ended up being 0.29. So, I lowered my 112 to 100 for two days of week and left the 112 for five of the days- that works! It took about 4 months for me to feel well after my surgery. I had insomnia (still deal with that somewhat), some anxiety still, felt down (not depressed though)- just moody a bit, daily headaches- just a tough time getting adjusted to life without a thyroid. Plus, life still moved forward in our home with my youngest being 7 months old at the time of my surgery- but, now I can say all those symptoms are totally gone (except for the insomnia which comes and goes).

I’ve found that, for the most part, my numbers do reflect my symptoms. So, going by labs for me has been fairly accurate.

I would also say that I am better off on Synthroid as opposed to methimazole. I couldn’t take methimazole because it escalated my liver enzymes quite a bit (8 times the normal amount), but I also didn’t feel great all the time on methimazole, so Synthroid is better. It isn’t perfect. It isn’t pre- Graves me, but it is good. I work out- cardio – for 30-60 min. most days a week- so I have energy for that too.

[adenure]

#1182758

Also, as a side note, I did try 1/4 of a 5 mcg pill of Cytomel with my Synthroid at one point when my T3 was at the lower end of normal, but I went hyperthyroid after being on it for a week. Truth is that after lowering my Synthroid from the 112 all 7 days to the 112 five days and 100 twice a week, my T3 numbers actually improved. I think it just takes time for your body to be able to convert efficiently the T4 to T3. Everything just takes time, yet we don’t want to wait because (in the mean time of waiting) we feel like crud. Sometimes we just have to wait it out and let our bodies do their thing even though it’s a tough road sometimes.

I also eat very healthy 98% of the time and workout most days- I take care of myself- which is important.

[Talley]

#1182759

I am on my second endo here in CO and think he has done a fairly good job of listening to me since my TT last year.

I was started on Synthroid 100 mcg post-TT by my ENT and didn’t see my endo for six months. When I saw my endo, he upped me to 112 mcg as I was still quite tired and he also wanted to keep me somewhat suppressed due to the cancer dx post-TT.

I changed to Tirosint after reading that it works better in many cases for patients with gastro issues. Again my endo made the change at my request. I also requested to add Cytomel since my T3 numbers were low and he added that.

I am now on 112 Tirosint and 10 mcg Cytomel. I finally feel as close to normal as I think I will – I think the addition of the Cytomel has made a huge difference for me. I am thinking of asking to lower my T4 and increase the T3 depending on my labs next month.

I also see a holistic doctor – but she is an hour away in Boulder and tough to get in to see. She wants to switch me to a compounded T3 since it has a longer half-life. She has also talked about changing other meds, but I am nervous since I am finally feeling better.

I think it generally takes time after a TT to get your levels figured out – what dosage you need and which medications to take.

Yes, you need an endo that will listen – and will have a plan of action (get it in writing) before your TT, so that you are prepared.

[ColoradoRN]

#1182760

Thank you all for taking the time to write. My Endo wants me to start on 137mcg after TT. I will try to see my PCP soon as well

I’m hopeful that I will feel better after my TT! I’ll keep you all posted

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