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Avatar universal

This is a follow up from my yesterday's post to Barb135: continuing fatigue

Quick recap: 16 yrs post thyroidectomy(cancer); the best I have felt since then is about 75% of normal.  Currently I feel about 30-40% of normal and have to severely limit my activities to allow for frequent naps.  I have a severe over-reaction to most activities:(  Labs from 11-16-17:  Free T4 1.87 (reference 0.59-2.19); Free T3 3.63 (ref 2.77-5.27); TSH 0.528 (ref 0.0465-4.68).  My endo decreased me last year to 125 mcg Synthroid but my TSH elevated to 6.2 and I needed to resign from my PT clinic duties due to severe fatigue and dizziness.  The labs I just posted were on 150 mcg Synthroid and 5 mcg Cytomel, but with no change in my symptoms; so my new doctor has increased me to 162 mcg Synthroid, and slowly increasing my Cytomel from the original 5 mcg, adding 5 mcg every 2 weeks to my current dose of 20 mcg Cytomel.  MAYBE a slight improvement in my symptoms, and I will go for a repeat bloodtest in about 3 weeks.  I will definitely ask my doctor to include the Vit B12, ferritin as well as the Vit D and Lyme test.  This is very frustrating as you can imagine!!  Any thoughts other than the lab tests and slow increase in my Cytomel?  
9 Responses
Avatar universal
Hypothyroidism is not just "inadequate thyroid hormone".
Hypothyroidism is best defined as "insufficient Tissue T3 Effect due to inadequate supply of, or response to, thyroid hormone".  Also, serum thyroid hormone levels do not always accurately reflect Tissue T3 levels.  One of the ways to measure this is to run a  Reverse T3 test along with a Free T3 from same blood draw, just to determine your FT3 to RT3 ratio and make sure your RT3 is not high.  So I would ask the doctor for that.   Also would be good idea to test for cortisol.   If interested you can read about this in the following link.  I highly recommend reading at least the first two pages, and more, if you want to get into the discussion and scientific evidence for all that is recommended.  

http://www.thyroiduk.org/tuk/TUK_PDFs/The%20Diagnosis%20and%20Treatment%20of%20Hypothyroidism%20%20August%202017%20%20Update.pdf

In Recommendation 14, on page 14  of the link, you will also find recommended levels for Vitamin D, B12 and ferritin.
1 Comments
Thank you very much for the information....I will read it!!
Avatar universal
Well, my lab results are finally in from a recent blood draw (2-6-18):
Free T4  1.15 ng/dl  (ref .76 - 1.46)
Free T3  3.0 pg/ml  (ref 2.2 - 4.0)
RT3  24.6 ng/dl (ref 9.2 - 24.1)
Vit D  23 ng/dl  (ref >29)
Vit B12 436 pg/ml  (ref 200 -1320)
Ferritin 54 ng/ml  (ref 7 - 137)
Iron % saturation 56%   (ref 15 - 50)

I just started taking Vit D, and my Cytomel is now 25 mcg/day split into 2 doses.  This has helped me feel less "sick" all the time, but I still fatigue very quickly.  I am hopeful now that I don't feel so unwell:)

Any feedback on my lab values would be appreciated!  I read your article and found it very helpful.  Thank you,
Nancy  VTPT
Avatar universal
Looking at your test results, your FT4 is above mid-range, which is adequate.  Your FT3 is at 44% of its range, which is somewhat lower than many people find adequate.  The biggest problem I see is that your Reverse T3 is above range.  Reverse T3 is a normal result of conversion of T4 to T3 and RT3; however, in some conditions some patients produce excessive RT3.  There is evidence of excessive RT3 binding to membrane receptors and producing hypo-metabolic effects.   The recommended ratio of Free T3 to Reverse T3 is at least 1.8.  Your ratio is only 1.2 (3.0 times 10 divided by 24.6) because of the high level of RT3.  

There are a number of reported causes for excess conversion of T4 to RT3, including low iron, selenium, zinc, B6 and B12, Vitamin D and a number of others.  You can read about this in the link I previously gave you. If there are known deficiencies in any of these, you need to supplement as needed to optimize.   For example your Vitamin D was much too low, it should be at least 50 ng/mL.  B12 should be in the upper end of the range, and ferritin should be at least 100; however, before supplementing iron, you need to discuss the seemingly conflicting results for your ferritin and % saturation.   With your D and B12 levels I would expect that you need to supplement with about 4000 IU of D3 and 1000 mcg of B12 daily, so discuss with your doctor.  

In addition I suggest that you talk with your doctor and request that your T4 med be reduced in order to reduce the amount of T4 available for conversion.  Along with that you need to continue to increase T3 med to raise your Free T3 level to upper third of its range, which will also benefit the FT3 to RT3 ratio.  

If your doctor has any reservation about this, you will find info and supporting scientific evidence for everything I have suggested, in the link above.  
Avatar universal
Thank you for your prompt reply....I have an appointment with my doctor in 2 weeks, and we will discuss all of the above.  I have begun Vit D supplementation and can easily add Vit B12.  She should be agreeable to lowering my Synthroid (T4) and we are gradually increasing my Cytomel (T3).  Originally for many years, my Cytomel dose was 5 mcg/day and we have increased it over the past 2 months to 25 mcg/day.  I also agree my iron results are a bit confusing; may bear looking into further with my doctor.  
Thanks again....for the first time in 16 years (my cancer surgery was 16 years ago this very week!) I have some hope: it is not "all in my head", and there is some scientific evidence to guide me!!  Thank you!
1 Comments
After 3 months of lowering my T4 and increasing my T3, as well as taking Vit D, B12, selenium and iron, I have new blood test results.  These coincide with my taking 125 mcg Synthroid, and 75 mcg Cytomel (labs in February I was taking 162,Synthroid and 25 cytomel):
Vit B12       1,205 pg/ml          ref range 220-1320
Vit D           95.6 ng/ml                             30-100
Ferritin      71 ng/ml                                 7-137
TSH            < 0.01 ulU/ml                        .36-3.74
Free T4      0.92 ng/ml                             .76-1.46
Free T3       4.1 pg/ml                                2.2-4.0
Reverse T3   16.3 ng/dl                             9.2-24.1
So I calculate that my ratio of FT3 to RT3 has increased to 2.51.    All of these labs show nice improvement since my February numbers.    I AM feeling better, just not good enough to be really functional yet (still unable to work, need frequent rests during the day after each attempted activity, not able to exercise/work out,  muscle pain and tendinopathy, and constipation continues)....I have less dizziness, can concentrate better, and feel better for larger portions of the day.

My question for you is since my numbers are better, but I still would like to feel better, should I stay on 125 Synthroid and 75 cytomel for a while longer? or should I continue to increase my cytomel by 5 mcg per week until my symptoms resolve?
So far, I do not have any hyperthyroid symtpoms.

Thanks for your advice....I wish I found this site 16 years ago after my cancer, since I havenot felt well this entire time!
- VTPT
Avatar universal
A question first.  Sorry if I have asked before, but do you take your thyroid med in the morning before the blood draw for tests?
1 Comments
No, I take it afterwards.
Avatar universal
You have made really good progress in all areas tested.  As I understand it you started on changes in meds and supplements about 2 months ago.  Since symptom changes tend to lag changes in thyroid and D3/B12 and ferritin levels, I think you should give it more time to see if your body has healed and is fully reflecting your current test status.    I suggest another 6 weeks and then if there are symptoms remaining we can discuss further action.  
2 Comments
Thanks for that input....I certainly want to feel better, but I also certainly don't want sudden hyperthyroid symptoms either.  I will stay at 125 mcg of Synthroid and 75 mcg of Cytomel.  The supplements I have been taking were started in mid-February, so about 3 months.   It was nice to see the positive changes in my blood tests already, but as you also know first hand, the numbers don't tell the full picture!   I will be in touch in 6 weeks!!  Until then, thanks for all you do!!
Well, I waited 6 weeks (have not changed from the 125 mcg Synthroid and 80 mcg Cytomel) but am still feeling quite hypothyroid ( fatigue, muscle pain, painful dry eyes, headaches, dizziness, constipation).  Looking for your advice regarding slowly increasing my Cytomel....I had been increasing it 5mcg per week until mid-May, and would like to begin doing that again unless you think I need to check something else first?  Thanks!
Avatar universal
Have you continued with supplementing for Vitamin D, B12 and ferritin?    What daily dosage of each?   Have you ever been tested for cortisol?
1 Comments
Yes, my Functional Medicine doc checked for cortisol....surprisingly normal-looking!
I have continued on the Vit D 5,000 UI (initial 6 weeks was 10,000 UI) , B12 2,000 mcg, Iron 25 mg every other day, and Selenium 200 mcg.  
If I continue to increase my Cytomel 5 mcg each week, I feel that would give me time to see if I am experiencing Hyperthyroid symptoms.   Any thoughts?
Avatar universal
Can you post the cortisol result please?

I suspect that the 25 mg of iron was not enough to optimize your ferritin (above 100).
2 Comments
You are correct: the ferritin was last measured as 71 ng.  The reason I was taking it every other day was two-fold: the constipation issue, and my elevated % saturation of iron.  
The cortisol was one of those dried urine tests performed over 24 hours, so it is not a "number" I can post per se; sorry!
Are you not favoring me increasing my Cytomel?
Here is the cut and pasted results from my 24 hour Dutch test:
Cortisol and Cortisone:
Cortisol A (Waking) Within range 26.1 ng/mg 12 - 40
Cortisol B (Morning) Within range 67.7 ng/mg 38 - 120
Cortisol C (Afternoon) Below range 5.3 ng/mg 7.3 - 21
Cortisol D (Night) Above range 10.4 ng/mg 0 - 10
Cortisone A (Waking) Within range 59.1 ng/mg 40 - 100
Cortisone B (Morning) Within range 154.4 ng/mg 90 - 200
Cortisone C (Afternoon) Low end of range 32.5 ng/mg 32 - 80
Cortisone D (Night) Within range 32.8 ng/mg 0 - 42
24hr Free Cortisol Within range 109.0 ug 80 - 185
24hr Free Cortisone Within range 279.0 ug 220 - 400
This was from one year ago when Functional Medicine was attempting to help me with my severe fatigue.   Apparently, cortisol was not the issue.  I still believe that I am not converting enough T4 into T3, and have begun to feel somewhat better by increasing my Cytomel....just not "good enough" yet.  That is why I would like to increase my Cytomel more at this point.
Avatar universal
Yes, you do need to increase your iron supplement.   I have found that VitronC is a very good supplement.  It contains Vitamin C which helps with absorption and also helps prevent stomach distress from the iron.    On the cortisol, there is noting that shows in those tests.  

I see no problem with slowly increasing your T3 med, since the objective is to take enough thyroid med is to eliminate the signs/symptoms of hypothyroidism  without creating any signs/symptoms of hyperthyroidism.  Are you doing that in conjunction with a doctor?  
1 Comments
Yes I am working with a Functional Medicine doctor.
I will look for VitronC and add 5 mcg of Cytomel.
Thank you for reviewing my case and advising me.
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