Thyroid removed

[jpteacher1]

I had my thyroid removed last spring due to an enlarge goiter. I was previously on Synthroid 100mg for the past 24 years to keep my non toxic multi modular goiter for producing hormones. Now my doctor increased my Synthroid to 125mg and may raise it again in a few months to 137mg if my numbers change. What is the “normal” TSH level for someone without a thyroid gland? Is there anything else I should be doing?

[steveconn1]

I had mine removed in 2015, unfortunately it took almost a year to reach a place where I was functioning reasonably. I am on a regime of daily 150mg levothyroxine and 175mg every other day. The endocrine system is highly complex and reactive, add in a autoimmune dysfunction and it makes the attainment of a universal, standardised medication substitute difficult. Good luck tho.

[CrissyD in reply to steveconn1]

May I asked why you had yours removed? I’m asking because I’d been on Levotyroxine for about 8 years, now on 75 for 4 days and 100 for 3 days, but I feel constantly tired and depressed and cold, so I’ve been told I might be better without my thyroid. Now I’m 33years old and not sure it’s the best option for the rest of my life...

Many thanks

[annnsandell in reply to CrissyD]

Hi CrissyD, I'm not sure that anyone can be better without a thyroid can they? It would appear to do far more than is medically recognised or treated and the general medical profession seems incapable of understanding the issues. Why are you considering it? Is it enlarged and putting pressure on your windpipe or cancerous?

I have been without one for about 10 years and still trying to cope.

[jpteacher1 in reply to CrissyD]

I had a huge multi-modular goiter that did not shrink after radioactive therapy. My old endo left it alone for 34 years. My new endo said it was pressing on my esophagus and needed to come out the same time I had three parathyroid glands removed. She said my thyroid was calcified and wasn’t operational for all those years. I had been taking Synthroid for all those years, so and my levels were “normal”.

[Angel_of_the_North]

The optimal TSH level is wherever it ends up when free T4 and free T3 are in the top parts of their ranges and you feel well. For most people that is between 0.2 and 1. You also need good levels of B12, folate, vitamin D and ferritin.

[Greekchick]

Dear jpteacher,

I just had my thyroid removed 4 weeks ago due to rapid growth of the gland and pressure on vocal cords. I have Graves also. I had a multinodular goiter for 25 years that was monitored. My current TSH is 2.65 , T4 is 19.6 and T3 is 3.5. These are within limits. ( T3 a bit low but this has risen over last two blood tests and is expected to go up). My endo is open to additional meds if T3 does not go up more.

However, you and your doctor must go by your overall clinical picture and not test results alone. How do you feel? This is really important. Your blood work can show normal results, but you may not feel well. Just before my surgery, I had normal blood work but also had terrible symptoms and a thyroid that doubled in size over a month’s time.

I kept my thyroid for 25 years because I did not have symptoms until 2 years ago. I have to say that I feel significantly better without it. I had numerous symptoms that I did not attribute to my thyroid but which disappeared within a week of surgery. I am not fully there yet, and have bumps along the road , but I am still better than I was before. I know this is not the case for everyone as can be seen from the comments above, and send positive thoughts to all of them for better health soon. I hope you all find light at the end of the tunnel.

Steveconn1 is so right though - there is not one standard and different people will feel better on different dosages. Our bodies just don’t always fit into neat little categories. As others on this forum who have really helped me have said, patience is needed while your dosages are being figured out.

I hope this helps you and I wish you well and that all goes OK for you.

[jpteacher1 in reply to Greekchick]

My latest levels are: TSH 2.66(10-18) and .73 (1-28). T4 1.4. T3. 2.38. (5-3-18) and 2.40 on 6-4-18

During my 25 years I never had a T3 or T4 test, only TSH which stayed in the normal range. When I was diagnosed with hyperthyroidism last year, I was referred to a major medical hospital in Ann Arbor. I had parathyroid surgery to remove 31/2 glands and 1/2 implanted in my chest. My surgeon also removed my thyroid goiter since she was already there and because of the way my esophagus was bent. At that time she also ran my TSH, Free T3 and Free T4 levels. She increased my Synthroid to 137mg from 125mg. She then referred me to my new Endrocrinologist who studied under her. We are now monitoring my thyroid dosage and monitoring my T3 and T4. I see him again in May and will have bloodwork done again at that time.

I am having difficulty with weight gain (had this problem for 25 years) but now have fatigue, brittle finger nails and dry skin. I’m thinking all of this may be due to my low level T3. Hopefully something can be addressed.

[Greekchick in reply to jpteacher1]

Sounds like you have had quite a time of it, but that you are on the verge getting things under control with your doctor. Weight gain and the other symptoms you describe would certainly indicate that your meds need adjusting. I was fortunately seen by an endo from the beginning going back and so I always had all my readings done, not just the TSH. I hope you get the relief you need and sending you good thoughts.