Avatar universal

suggestions for thyroid

Have history of Chronic Fatigue.  been trying to get thyroid into a better range as without meds #s were on the low end of the scale.  when i met with dr in novemeber I told her I was still so tired.. so she had me stop the NDT and add T3  5 micrograms at a time until I got up to 30mcg.  
I got to the 30mcg T3 mark by mid december.  At first I felt more stamina.. but i also noticed  especially the day I did labs March 1  without the meds i felt a lot less stress and anxiousness. I felt calm   I am pretty sure this is way too much  T 3 for me.     not sure how to lower the dose.   i dont like the angst feeling..

ALSO  a huge question/ concern I have is almost immediately when I stopped the NDT  and started on the T3 I had horrilbe menstrual cramps (no cycle)    
it seems like my body might like having a  little bit higher FT4 level.  
I am not sure why she took me off NDT  and added T3 rather than  increasing the NDT ?  
really open for suggestions.  I  have had some thyroid antibiodies come back high a few times but i am also on IGG therapy..so the antibiodies might be coming from that.  
thank you for your help.
Oct 2021 labs   Meds  112 T4  30 NDT
labs done med fasted .
FT 4  1  ng/dL   ( 0.8 - 1.8 ng/dL)
FT3   2.9  pg/m L  (2.3 - 4.2 pg/mL)
RT3   11    (ng/dL  8-25)
TOTAL T3   133  (ng/dL76 - 181 ng/dL)

March 1 2022 labs   dr changed dose to 112T4 30 T3 mid november 2021
med fasted labs
FT4  1.0 ng/dL 0.8 - 1.8 ng/dL
FT3  4.2 pg/mL2.3 - 4.2 pg/mL
RT3  10 ng/dL  8-25
TOTAL T3   177 ng/dL76 - 181 ng/dL

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Avatar universal
You are very welcome for any help I can give.  Dosage for SR T3 should be the same mcg as what you are taking.  SR should be  a direct substitute.  
Helpful - 0
Avatar universal
If you started back on 10 mcg a couple of days ago, then I'd give it a few more days and increase to 15 and see how you feel.  Remember the objective is to alleviate hypo symptoms by gradually increasing your thyroid med as needed.  Everyone can be different in the levels needed so you cannot target specific test results. Sustained release is typically more expensive but it would be good, since it more closely mimics the continuous low flow in the natural state.
Helpful - 0
thanks again! I wonder how does one determine the dosage for sustained release?   I can't remember the name of the dr that was using  (very unusally ) very small doses of SR T 3 ?   I guess with SR the trick would be start low and go slow as well ?   thanks for the guidance with the  liothyroine
Avatar universal
With sleep problems you definitely should stop caffeine or other stimulants early enough to be sure they don't affect sleep.   I think you went too far when you stopped the T3 med.  I think you need to go back to 15 mcg and see how that works for you.  
Helpful - 0
thanks Gimel!  question:   do i start back at 15 or work my way up?  I started back at 10 a couple days ago.. and i feel a difference already..but also I had to take a zpak for an infection ..sleep was not very good last nite.   will continue to be mindful of the caffeine , etc.    i was looking at some things about   very low dose sustained release T3.. like 1.5mcg that seems intriguing to me .    I like the idea of having  alittle bit consistantly released.
Avatar universal
Regarding your FT4 level, you need to remember that the ranges are established from the lab's database of all their tests.   Since doctors typically don't tell hypo patients to delay thyroid med until after the blood draw, those test results and associated ranges are higher than they would be if all those patients waited 24 hours before blood draw, like you.   Our bodies are used to a continuous low flow of thyroid from the gland,  When you take a dose all at once, it spikes the level for hours, resulting in higher test results during that time.  

So I would be very cautious about making dosage decisions based on your results  compared with regular lab reference ranges.   Every one can have different thyroid levels at which they feel best.  Dosage really should be based on relieving symptoms, with FT4 and FT3 results mainly used to monitor levels, and help determine dosage adjustments.

Note that symptom changes tend to lag changes in med dosage, so now that you have reduced your T3 dose, I would wait for a while and see how you feel before making any further changes.
Helpful - 0
Its been almost a month since the change in T3 dosage.  I was sleeping very poorly  I didnt know what else to do so I ended up totally off the T3. about 4 weeks ago.   got sick with something (not uncommon for me being immunocompromised)  2 weeks ago and have been totally exhausted.   Even 5 mins of moving around my apartment ..trying to clean up  leaves me exhausted.       I  went for months witout any T3 back in 2019 and 2020.. was doing ok.   not sure why such extreme change now?    I guess I need to go back to some T3 and hopefully be able to function.   I need to work harder to NOT have any caffiene after 2 pm   maybe that will help the sleep issue with the T3.   ?    I hope this makes since.. brain is in  a foggy fog fog.  :)   thank you
Avatar universal
IF you did not take your thyroid med for 24 hours before the blood draw for those results, I see no need to raise your FT4 level.   Also, the delay means your FT3 result is even higher than shown in the test results and a further reason to reduce your T3 dosage.  As for polycythemia, I assume it is not primary (PV).  Causes of secondary polycythemia include::

being at a very high altitude
obstructive sleep apnea
certain types of tumor
heart or lung disease that causes a low oxygen level in the body

So I don't know why taking an iron supplement would cause polycythemia.  Are you sure taking iron was the cause previously?  At any rate it deserves a discussion with the doctor, because you need to raise your ferritin level.  A ferritin like yours can be considered as low enough to cause the following symptoms, some of which mimic hypothyroidism:

difficulty concentrating
poor work productivity
cold hands and feet
poor short-term memory
pounding in the ears
shortness of breath
brittle nails
restless legs

Helpful - 0
HI I am sorry for the delay . I am sure I typed in a reply a few days ago, but no idea where it went.  :)

correct the polycythemia is not primary.  it is secondary and caused by a medication that i need right now.  but it only spikes when I take extra iron.   so increasing ferritin isn't an option .    I am feeling more calm since reducing the T3 .  

I still think the FT4 could come up some.. it is only at 1  and i have always heard it is more optimal around mid range or slightly above.    I also thought the FT4 isn't supposed to flucuate much aftre 6 weeks. meaning    I thought it is supposed to stay around the same level  not mattering when I had the lab drawn.     is that confusing?

thanks for your help.
Avatar universal
I expect that the reason why the doctor changed from NDT to T3 is that it enable adjustment of  FT4 and FT3 separately.   Your dosage before the change was 131 mcg of T4 (112 T4 plus 19 from the NDT).  Your T3 dose went from 4 1/2 mcg to 30, which is quite a change.  With your FT3 at top of range, it would be a good idea to reduce the T3 dosage to eliminate the effect on your symptoms.  You can do that fairly quickly since T3 has a half life of only about 4-5 days.  That means any change you make will be fully reflected in serum levels in 4-5 days.   So you could reduce down to 10 or 15 mcg of T3 to be somewhat equivalent to prior levels.  

One thing comes ot mind with your reaction to that FT3 level.  There are reports of hypothyroid patients having adverse reactions to raising FT3 levels if ferritin levels are not adequate.  Ferritin is a storage form of iron that is readily available for use.  It is a precursor to serum iron levels.  Ferritin should be at least 100.  If not tested for ferritin I highly recommend doing so and then supplementing, if needed, with Iron plus C, from CVS.  

Also, for best response to thyroid , Vitamin D should be at least 50 ng/ml.  Also to alleviate fatigue it is best to have B12 in the upper part of its range.

Have you been tested for ferritin, Vitamin D, and b12?
Helpful - 0
Hi thank you for the good detailed info.  I belive my T4 dosage should come up.. even according to the labs dont you think so?     I have had those labs done.. lets see if i can find the results.. I can't add iron though becasue I get polycythemia when I do so..   so I dont think I can safely get Ferritn up to 100.

The thyroid labs were done without taking any thyroid meds for at least 24 hours prior to the lab draw.. considering the levels were at the top of T3   I can't imagine how high they might be when I actually take the thyroid meds.      
thanks for the help!   oh i had also not had any B vitamins in at least 24 hours prior to the labs so I am estimating the B12 level even higher on average.  

MARCH 1 2022  
VITAMIN B12  1021
Reference Range: 200-1100 pg/mL

Ferritin 69 ng/mL 16 to 232 ng/mL16 - 232 ng/mL  

Iron, Total 96 ug/dL 20 to 160 ug/dL20 - 160 ug/dL
Toxic range: >350
TIBC 330 ug/dL 200 to 450 ug/dL200 - 450 ug/dL
Transferrin Sat 29 % 20 to 60 %20 - 60 %

Avatar universal
You have one thing going for you that most hypothyroid patients don't: a doctor that is willing to test Free T3, and prescribe T3 med.   That is a good start.  

I also have some questions about the change in dosages, but symptoms are even more important as an indicator of thyroid status than lab tests, so please have a look at the following list of symptoms typical of hypothyroidism, as published by the Mayo Clinic, and tell us which ones you had before the dose change and which ones you have currently.

Increased sensitivity to cold
Constipation (have to use laxatives/fiber)
Dry skin (use skin creme)
Weight gain/difficulty losing excess weight
Puffy face
Muscle weakness
Elevated blood cholesterol level
Muscle aches, tenderness and stiffness
Pain, stiffness or swelling in your joints
Heavier than normal or irregular menstrual periods
Thinning hair
Slowed heart rate
Impaired memory
Enlarged thyroid gland (goiter)
Helpful - 0
thank you.  my memory is so bad.. i try to log everything  but sometimes I get off track.. I do know  in April through Oct last year I was doing alot of projects that took alot of energy .. unusal for me..my records didnt indicate what exact dosage i was on ..
so not sure that helps much.   Ok I copied the list and wrote my answers next to the symptoms.

i am suprised sleep isn't on there.  

before med change I had been able to taper off sleep meds and was sleeping pretty good.
since change sleep even with meds can be difficult.

Fatigue (this has been a constant since age 33 i am 55 now.  ) i would say it was better before the change..if i had to pick

Increased sensitivity to cold  (not sure)  some days

Dry skin (use skin creme) worse since change but it is also "wintery months)

Weight gain/difficulty losing excess weight ~  I think i have gained a few pounds since the change

Hoarseness   ~  yes i have noticed since change..not sure about before the change
Muscle weakness- yes since change

Elevated blood cholesterol level  -  for a while now low hdl

Muscle aches, tenderness and stiffness-  yes .. more stiffness since change and new tendon issues aren't going away since change .. is this related?

Pain, stiffness or swelling in your joints  yes  elbowitis  started in oct but not really getting any better.. also had a right foot issue since end of dec.

Heavier than normal or irregular menstrual periods-  cyclces stopped in 2013  BUT they seem to be trying to come back with  depeliating cramps on schedule monthly--  was definatly worse since the change..   also worse since i started the taper down of T4  end of 2019

Thinning hair not sure. .   yes i think

Slowed heart rate   not sure .. feels like  i am shallow breathing often.. that i noticed the day i did labs and did not take thyroid meds.  I could breath deep and felt much more relaxed. .

Impaired memory-   FOR SURE..  bad before ..not sure if change made it worse.   vision is strange though .. i wear progressives and alot of things seem hard to see / find.

thank you!
also with the muscle aches i think i have seen a pattern of quads ache..even if i dont walk for one day they still ache the next day..  and same for days when i walk only 4000 steps.. quad aches the next day.   that seems to happen when T4 isn't enough.    
Avatar universal
I quess one question I have is what is the best / fastest way to taper down the 30T3? my dr email to reduce it until i feel better.. but that was not specific at all and I dont know if she has seen the labs.   i have an appt with her on the 14th ..but  i hope we can find a better way to go.   no wonder I  haven't been able to sleep.
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