Are Endocrinologist the best MDs to treat Thyroid Carcinoma patients

Endocrinologists do vary, I had one that started me on Armour. That was in another state where I lived at that time. She also knew the charts out there are super super conservative and correct amounts really differ from those charts, she knew how to calculate the correct amount. Where I live now there aren't any Endo that handle Armour, so my primary care does. I do see Endo for the cancer part. What I hear in your info is real common to hear, it shouldn't be though of course.

Some info from a blog at https://biomedee.blogspot.com/

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What are the equivalent amounts to switch from T4 only to NDT (middle of a bell curve)?

With NDT we use the word "grain". 1 grain of NDT has 38 mcg T4 and 9 mcg T3 in the USA. The listed mg of a grain depends on brand such as Armour or Nature-Throid. A grain can be 60mg or 65 mg (which is not an amount of T4 or T3) and again depends on the brand as to the mg but not the amount of T4 and T3.

This chart is aimed at the kind of middle of the curve group where 1 mcg of T3 is about like 2.5 to 3.5 mcg of T4. It does not represent all people, just kind of the middle of the bell curve. Amounts to swap are dependent upon each individual and how T3 works on you. With that in mind, the middle of the bell curve group suggests swaps having 1 grain equal about 60 to 70 mcg T4. You very well may need more or less if you take very large amounts, or very low amounts, of T4 to work for you and you are of normal weight:

100 mcg pure T4 calculated 1.4 to 1.7 grains: Low possible 1.25 grains, average 1.5 to 1.75 grains, high possible 2.0/2.25 grains
125 mcg pure T4 calculated 1.75 to 2.1 grains: Low possible 1.5 grains, average 1.75 to 2.0 grains, high possible 2.25/2.5 grains
150 mcg pure T4 calculated 2.1 to 2.5 grains: Low possible 2.0 grains, average 2.0 to 2.75 grains, high possible 3.0/3.25 grains
175 mcg pure T4 calculated 2.5 to 3 grains: Low possible 2.25 grains, average 2.5 to 3.0 grains, high possible 3.5 grains
200 mcg pure T4 calculated 2.85 to 3.3 grains: Low possible 2.5 grains, average 3.0 to 3.5 grains, high possible 4/4.5 grains

Once again, you split this in two, taking half first thing AM and half in the afternoon or some variation like in thirds, etc.

Those who do not absorb synthroid that well and thus take larger amounts are further out on a bell curve and would have differing numbers than above. For them 1 mcg of T3 might have the effect closer to 5 or 6 mcg of T4. This would be very possible but is less likely. So keep in mind the chart above is middle of the curve and if you are taking very large amounts of synthroid with a normal weight the chart above may not apply to you but it may be possible to adapt it knowing you take double the amount of synthroid than others your weight for example.

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But the charts give a different equivalent for NDT, why is that?

Equivalency charts are designed around a highly conservative view that the highest possible effect should be listed in equivalents in case of side effects, trouble is that can raise TSH and leave you feeling lousy. Because of that basically there are charts out there giving incorrect amount of NDT to replace pure T4 even by conservative measures. These charts say 1 grain has the same effect as 100 mcg T4. This is just not the case. 1 grain of natural thyroid has only 38 mcg T4 and 9 mcg T3. This cannot have the same effect as pure 100 mcg T4.

From the calculations below you can see that for most people 1 grain of natural thyroid (USA only) has the effect of somewhere in the 60 to 70 mcg area of straight T4 only.

38 + [9x (varies by person but try 2.5)] = 38 + 22.5 = 60.5 T4 equivalent in my case because 1 mcg T3 has the same effect for me as 2.5 mcg T4.

38 + [9x (varies by person but try 3.5)] = 38 + 31.5 = 69.5 T4 equivalent in a person where 1 mcg T3 has the same effect as 3.5 mcg T4.

@ptc61
Endocrinologists just help to monitor bloodwork and hormones plus prescribe medications for treatment. I’m not sure why yours would not work with the surgeon who removed your thyroid and reviewed pathology to determine if RAI is needed and would be beneficial.

You do need to have regular ultrasounds to monitor regrowth of thyroid cells to ensure the cancer doesn’t return because thyroid cells do regrow. Managing TSH to get into your normal levels (not just reference range) is important and it sounds like you haven’t found the right medication or dosage to bring your TSH down.

Have you seen an oncologist/hematologist? What type of thyroid cancer did you have and did it spread to lymph nodes?

When my Endo talked with Nuclear Med, at my insistence, and Nuclear Med recommended RAI I had 90 mCi in early 6/2025. I've had a follow-up Ultrasound post TT and it showed no concerns.
My symptoms since Total Thyroidectomy 2/2025:
1. Daily constipation (not from too little water. I've always had to drink 2+ liters daily due to being prone to kidney stones)
2. Dry skin and dry flaky patches on my face
3. Severe fatigue (I've had to reduce my hours from 36 to 20 hrs/wk.), decreased cardio fitness level and cardio recovery worse (I have to take several short rest breaks during a task that I didn't have to before TT and break task completion up over days instead of performing in a day).
4. Short of breath doing mild to moderate intensity things i.e. walking up 16 stair steps, taking a shower and getting dress. (In other words, doing things I did without any difficulty before total thyroidectomy). If I do resistance exercise, I'm on the sofa for hours afterwards recuperating.
5. Thick brain fog that comes on quickly making it difficult to form sentences, difficulty carry on long conversations, difficulty with analytical thinking, making errors in writing leaving out words, grammatical errors, word finding difficulty and spelling errors. It feels if I have dementia, but it is transient and seems to come on after having to use my brain to think for a period of time and then improves with a break in not having to think too much, but instead doing automatic already learned tasks.
6. Feeling hot then cold within a few seconds
7. Bending down to pick up something and feeling light headed when coming back up.
8. Pre diabetes
I was diagnosed with Invasive Follicular variant of Papillary Thyroid Carcinoma and no spread was found to Lymph nodes.
I've been to a hematologist very recently who tested Ferritin that was normal, Iron that was lower end of normal, Iron Binding Capacity at very low end of normal and % Saturation that was abnormal low. The hematologist only addressed the ferritin result saying that it was the best marker for total body iron stores and because it was normal he did not think iron was the cause of my severe fatigue. I also saw a cardiologist very recently who said that my symptoms could be all from post-thyroidectomy and that until that was fixed it would be difficult to tease out cardiac issues. Otherwise, my previous cardio work-up results are good or under control.

When my Endo talked with Nuclear Med, at my insistence, and Nuclear Med recommended RAI I had 90 mCi in early 6/2025. I've had a follow-up Ultrasound post TT and it showed no concerns.
My symptoms since Total Thyroidectomy 2/2025:
1. Daily constipation (not from too little water. I've always had to drink 2+ liters daily due to being prone to kidney stones)
2. Dry skin and dry flaky patches on my face
3. Severe fatigue (I've had to reduce my hours from 36 to 20 hrs/wk.), decreased cardio fitness level and cardio recovery worse (I have to take several short rest breaks during a task that I didn't have to before TT and break task completion up over days instead of performing in a day).
4. Short of breath doing mild to moderate intensity things i.e. walking up 16 stair steps, taking a shower and getting dress. (In other words, doing things I did without any difficulty before total thyroidectomy). If I do resistance exercise, I'm on the sofa for hours afterwards recuperating.
5. Thick brain fog that comes on quickly making it difficult to form sentences, difficulty carry on long conversations, difficulty with analytical thinking, making errors in writing leaving out words, grammatical errors, word finding difficulty and spelling errors. It feels if I have dementia, but it is transient and seems to come on after having to use my brain to think for a period of time and then improves with a break in not having to think too much, but instead doing automatic already learned tasks.
6. Feeling hot then cold within a few seconds
7. Bending down to pick up something and feeling light headed when coming back up.
8. Pre diabetes
I was diagnosed with Invasive Follicular variant of Papillary Thyroid Carcinoma and no spread was found to Lymph nodes.
I've been to a hematologist very recently who tested Ferritin that was normal, Iron that was lower end of normal, Iron Binding Capacity at very low end of normal and % Saturation that was abnormal low. The hematologist only addressed the ferritin result saying that it was the best marker for total body iron stores and because it was normal he did not think iron was the cause of my severe fatigue. I also saw a cardiologist very recently who said that my symptoms could be all from post-thyroidectomy and that until that was fixed it would be difficult to tease out cardiac issues. Otherwise, my previous cardio work-up results are good or under control.

@ptc61
What is your TSH level now?

What is your current iron TIBC and are you taking any iron supplements?

I had a lobectomy due to 2.5 cm suspicious nodule that was causing swallowing and speaking issues and wanted it removed (in my 50s) because my sister had thyroid cancer in her 20s and a full thyroidectomy. They found a micro cancer and no spread to lymph nodes so removal of lobe was sufficient (no RAI needed) plus levothyroxine (first 88 mcg then 100 mcg) to get my TSH below 2.0. It fluctuates between 0.5-1.75 now. I felt like a zombie after lobectomy when my TSH crept up to 4.5-5. I am now considered hypothyroid plus have confirmed Hashimoto’s (my mom had this, too).

I had many of your symptoms and also had iron deficiency before lobectomy and things improved once my iron and thyroid issues were addressed (took Polysaccharide Iron Complex Ferrex which is better and more gentle on gastrointestinal system). I am not a big meat eater and more of a vegetarian and diet plus heavy menstrual cycles caused my iron deficiency (had d&c to remove 3 polyps and they put in an IUD to reduce bleeding).
https://www.drugs.com/mtm/iron-polysaccharide.html

I understand where you are coming from. It’s like we need someone you specializes in just thyroid. It’s hard to find.

I'm glad that your symptoms improved. I'm sure that your quality of life must have improved. My TSH should optimally be 0.1-0.5. My TSH is 1.22, Iron is 50, Iron binding capacity 257 and % saturation is 19, Ferritin 134. I'm not taking iron supplements, it wasn't recommended. When I asked what I could do to increase % saturation I was told to increase my protein intake and eat with vitamin C foods as well as don't combine calcium and protein. Taking vitamin C with protein and avoiding calcium with protein was new information for me and I appreciate it. I wish this information would have been offered without me having to ask what I could do instead of MD responding to my normal Ferritin level only. I'm learning to advocate for myself and encourage everyone else to do the same. I'll look into the Polysaccharide Iron Complex Ferrex, though I know Iron interferes with the absorption of Synthoroid and Armour medication. Thank you for your response.