Is free T4 lab necessary?

[okaykay]

Hello all,

I am being treated for Hashimoto thyroiditis. I m only on T3 therapy. My body doesn’t convert T4 at all. My Doctor just died from Complications due to COVID and the NP in the office treating me. My TSH was 0.9 which is good, and my FT4 was 0.02.(0.8-1.7). We increased my T3 dose and will recheck in 6 weeks. Is it even necessary to check the FT4? My body doesn’t make it anymore and won’t convert it. Am I correct in my thinking?

[SlowDragon Administrator]

No probably not worth testing Ft4 specifically.....though it would possibly be interesting to see if your own thyroid is making any

With Hashimoto’s it is important to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Are you on strictly gluten free diet or dairy free diet

[okaykay in reply to SlowDragon]

Thank you for your response. I’m absolutely crushed about my doctor. The 0.02 is what my own body is making. I’ve been on T3 “only” since January 2019. I’ve felt good until about the last 6 weeks. I’m on prescription D3 50,000 iu weekly, I take selenium, B complex, B1, vitamin C. He didn’t order tests for folate, ferritin or B12, but i can ask my rheumatologist to order, folate, ferritin and B12, when I see him on January 19th. They were all good a year ago. I’m dairy free and limit my gluten. However, I’m the strange one that is extremely under weight for hashi’s. I am 5’9 and weigh 105pd. I’ve lost 10 pounds in the last 4 weeks. That’s how I knew my T3 was low. It’s a double edged sword. I don’t have the severe joint pain with this flair, just super tired and can’t sleep well. In 2017 my TSH was 55.6 and my TPO antibodies were above 1300. I was so sick. This group saved me and my doctor respected my research and knowledge of a sick thyroid. I miss him dearly. 😢. I also have sjrogrens syndrome. Everything went to hell when my thyroid checked out. I told the NP that the doc gave me free reign of dosing myself 5mcgs at a time. The NP up it 10 mcg to start. I was on 35mcg a day and it was just increased to 45mcg. I do have enough to dose up more if need be. Slow and easy is how I use liothyronine. I think my thyroid is done doing anything at all, other than taking up space in my neck. Thank you so much again for your guidance SlowDragon. You’ve helped before and I appreciate it more then you know. 💛

[DippyDame in reply to okaykay]

"I’ve lost 10 pounds in the last 4 weeks. That’s how I knew my T3 was low"

Losing a lot of weight quickly is more likely be a symptom of overdosing T3....not low T3.

I am T3 only and I lost weight as my metabolism improved but I reached a point where I became overdosed (established by other symptoms) and weight loss continued and I started to lose too much weight..

Now back on track and weight has stabilised.

Am I understanding correctly that your NP has now sanctioned increases by 10mcg a time? This is too much too soon.

A quarter tablet ( as you had been doing) every 6/8 weeks gives the body time to adjust to each increase it also means you are less likely to miss your therapeutic dose and therefore begin to overdose.

There is a point when dosing with T3-only that you can inadvertently overdose, miss the therapeutic window and experience the converse effect....that is your symptoms suggest underdosing when in fact you have taken too much hormone. You may continue to increase your dose when you should be reducing it. You need to be very aware of what your body is telling you.

You are correct, " slow and easy" is absolutely the correct way to dose T3 but your NP doesn't seem to understand this. I suggest that you return to 5mcg increases and wait 6/8 weeks before considering another increase.

FT4 labs will inevitably drop as you increase T3 and TSH will drop and can eventually be suppressed. Unless you have a form of thyroid hormone resistance (RTH) , which I very much doubt, then you must keep your FT3 in range. FT4 testing not so important but it's good to know where your levels are sitting.

For example.....I need a supraphysiological dose of T3-only (currently 100mcg has been 200mcg ) because I have RTH, Without having RTH I would be seriously overdosed. There are no tests to judge how much of the hormone is overcoming resistance and reaching cellular/ tissue level so I dose by very closely monitoring a number of signs and symptoms. I've been round the houses and back again using T4, combo T4/T3 and then T3 only and have now found my required dose so my comments are based on experience....I'm not a medic

[okaykay in reply to DippyDame]

I’m only increasing it 5mcg at a time, then I will do labs in 6 weeks and see where it’s at. My T3 is filled for 3 months at a time, so the new script was written for the added 2x5mcgs. I unfortunately know about the awful symptoms of the opposite (graves symptoms.) it wasn’t from any thyroid hormone replacement, just what my own thyroid was doing. I say it was literally burning itself out. Those are terrible symptoms also. Thank you for your information. I don’t think we can ever know enough and it’s by the experience of others that we all learn. I’m glad to hear you are feeling better and found your sweet spot. My only symptom now with low FT3 is being very tired and brain fog. Again, thank you so for your knowledge and sharing your experience. 😊

[Hidden]

Giving a different perspective on your situation - I am on T3 only as well, also lost a lot of weight (and not because I was taking too much T3, in fact I still have a lot of hypo symptoms). I discovered this is because of various 'metabolic blocks' for want of a better term, so that in effect, the food you eat isn't being optimally metabolised and much of the intermediates are simply lost via one's urine. This means that you'll lose weight.

Going diary and gluten free (but particularly the former) was very damaging to my health. I did it because I thought it was the right thing to do with autoimmunity, but it was wrong (for me). It resulted in my B vitamins plummeting, and I am in particular B2 and B12 deficient. You can really only find that out by doing an OAT (Organic Acid Test) which looks for various organic acids (i.e. intermediates in various biochemical pathways) in your urine. Active B12 tests aren't worth the paper they're printed on, so if you've had one of those and it shows your levels are high then quite likely you are deficient (paradoxical B12 deficiency).

Anyway I digress, unless there is a more sinister cause for your weight loss, my feeling is you may be losing weight because you're not retaining the metabolites produced via food digestion, and the only way that will stop is by improving your nutrition, the central thing being B2 (riboflavin) as it is essential to the workings of over 100 enzymes. That would mean eating dairy, which is a very good source of B2. Do you react to dairy or did you just stop it because you thought you should?

[okaykay in reply to Hidden]

Thank you for all that information. Nobody can figure out why my weight is so low. I had a Abdominal CT scan in February 2020 and an abdominal MRI in December 2020. They didn’t find anything which is a good thing. I stopped dairy because I thought it would help me. I don’t have a reaction to it at all. I have been to thin since 2015. I’ve always been thin, but not to thin. I didn’t lose a pound adding T3 or going T3 only. I will absolutely talk to my rheumatologist about this on the 19th. I’m sorry you struggle with keeping weight on. The struggle is real too. Thank you again for sharing your experience. I’d love to gain weight. I appreciate your knowledge very much. 😊

[Giffysmith]

I just wanted to say I am so sorry to hear about your doctor too and hope you have support around you too with this loss. Nurture and self-care are so important in life's challenging times. Sending love x

[okaykay in reply to Giffysmith]

Thank you!