Hi Community! For those that had a thyroidectomy due to enlargement and no other issues (I framed it this way recognizing how treatment is presented isn't/may not be typical), how have your experiences been with getting your levels regulated, weight gain/weight loss and or hopefully subsequent weight loss?
What have you found that works for you in all areas?
Yes, that's me I still only have one issue that is no thyroid. Before the removal, my thyroid was working perfectly but I had an enlarged goiter growing downwards and moved my trachea, so hence the need for removal.
That was three years ago and I do well on 2 grains of NDT thyroid s which I purchase myself. If I am going to do lots of exercise I add another 1/4 grain to help out.
I forgot to say no weight gain a steady 10 stone and 5 foot 8 inches tall. I have never been on any type of diet, the only time I ever put on weight was after my TT when put on Levo for 8 months when I gained 10 lbs. It went within a couple of months on NDT.
Hi Bunnyjean! It's good to hear that you're doing well on NDT and that you lost the weight and it stabilized. It's also good that your weight gain was over a period of 8 months. When they started me on Levo 125mcg/100mcg then Syn 25mcg/50 in between February and May I seem to be fine. Then in one month, I gained 8 pounds between April 1 and May 1. Needless to say, I'm not at all happy about that.
I'm now on NDT (Armour) and I'm still adjusting as I'm on the lowest dose but I don't think I've gained any more weight or rather my clothes that are fitting tighter due to the weight gain I'm still wearing so I guess that's a positive. I'm 5' 4 and at last doctor weigh-in on May 1st I was 193.8 pounds. Thank you for responding.
You should start to feel better now that you are on Armour, how much are you taking?
The lowest dose which is 15mcg. I know I will definitely have to increase it because as of my last bloodwork results May 15 were low, Free T4 0.3 ng/dL; TSH97.220 uU/mL; April 16, Free T31.4 pg/mL. However, I'm not sure why the T3 wasn't tested along with TSH/T4. I see my endocrinologist on June 14.
With all of that being said, I'm good with starting low due to the issues I have with horrible side effects and so far I'm feeling fine. The only issues have been the weight gain which is inevitable I guess when not taking optimal doses of NDT. My prescription though is also due and because it has to be in 90 day supply in order to avoid paying the full cost I need to call her before the appointment and see if she's going to change the dosage. As of now the first prescription was for 30 days.
After a TT you should be on a much higher dose, mine is 2 grains of NDT which =
78 T4 , 18 T3. You are only taking 15 mcg
After my TT I was put on Levo and became very ill so I joined this site and switched to NDT Thyroid s which I source myself and have done for about three years now.
I do my own private blood tests and never visit the GP or Endos they all made me feel ill and really did not have a clue to medicating without a thyroid. I paid privately too but they were all as bad as one another.
When I started with NDT I did exactly as told from the people on this site starting with a full thyroid and vitamin test + antibodies. I then posted the results with the ranges for answers.
I started with half a grain and increased every 10 days. I did take two years for me to find the correct dose, it's a bit hit and miss and patience.
My weight is 140 lbs and I am 5ft 8 inches. I feel well and I am 72 years old.
Hi Bunnyjean! That's great that you've finally found your sweet spot. So far my endo doctor has been good with listening to me when I asked to be put on NDT and removed from Levo/Syn. So, for now, I'll stick with her. I hope as I increase the NDT, I continue to do well and that I find my sweet spot sooner rather than later.
Thanks for sharing and responding.
I had a TT due to multi nodules that were pressing on my esophagus causing difficulty for me to swallow. Let me just say, I'm 5'9" and had never weighed more than 135 pounds except.when pregnant. I now weigh 186 pounds and have never felt like my old self dispute the numerous med changes, exercise programs and weight loss attempts. TT has ruined my life, I have constant brain fog, fatigue, depression, I had to give up my nursing career dud to these issues. If I had known how my life would be destroyed by the TT I would never have allowed the Dr to remove it.
Hi Lostmylife! I completely understand. If I'd have known then what I know now I would have only had them remove the enlargement and if I had to go in for surgery at a later date then so be it but at least I still would have had part of my thyroid and from my understanding that could have been managed. Have you ever been able to get your levels/dose regulated? It sounds as if they're still off.
What meds are you on and dose?
Hi if you post more about yourself people will try and help you. I knew nothing about the thyroid until I joined this site back in 2016. My TT was in Oct 2015 and before it was removed it was working well and I was not on any medication. After 8 months on Levo and feeling very ill I joined this site and was helped to return to health. I took a private full thyroid and Vitamin blood test, then posted the results with the ranges on the site and waited for answers. I now self medicate with NDT and feel well. It took two years for me to sort it out but now I take 2 grains of thyroid s each day and a private blood test either once or twice per year.
You can get well just let us help you, please!
Hi BunnyJean! So, first off I've just today been able to log in to this account the was a password issue/blocked email, yadda, yadda, yadda. Well now I can respond--
so I've been increasing my Armour and I've not had an issue. I started with 15mg (I'm in the US) and I'm currently on 90mg+30mg daily and still fine. A few weeks ago I was taking 90mg/4 15mg equaling 150 which my endo doc wasn't too happy about because I increased on my own due to the symptoms of muscle aches, tenderness and stiffness, especially in the shoulders and hips, joint pain and stiffness
swelling of the small joints in the hands and feet which I attributed to not having a high enough dosage.
I informed her of the symptoms and may increase and she told me to drop back to 90mg/15mg daily, however, in the process I couldn't get a prescription for the 15mg's due to timing but I could get the 30mgs which is why I'm still just a bit higher than what she wants. I might add that in the time of messaging her and hearing back I'd run out of the Armour so was off a couple/few days and the aches stopped. She did mention;
"Being really undertreated or overtreated with thyroid hormone can cause some people to have arthritis discomfort.
She was really undertreated, and now most recently has self increased the dose to such an extreme that she is frankly hyperthyroid.
Both extremes can make a person feel poorly.
I suggest we try to target the normal level -- and I am trying to do that by now lowering the dose."
Now it could be coincidence that I stopped having the pain or she could be correct that I self medicated a bit much but for now I'm following her lead again.
I have new results as of 08/22/2019:
Free T41.2 ng/dL0.9 - 1.7 ng/dL
TSH0.031 uU/mL0.400 - 5.500 uU/mL
I'm now on Armour 90mg/30mg daily and feeling pretty good. My history if interested comprises of 4 previous posts.
Covid sent me from managed hypo to hyper… 
From Graves to HYPER to RAI to HYPO and now Levo 
Can a cold make you swing from Hypo to Hyper?
Gone from Hyper to Hypo advice with meds please. 
Cycling from hypo to hyper on t3 and t4
