Hi new here. Also in the US. I had TT 4/23/24 and was started on 137 mcg levo right after. Fast forward to May I was having numbness to my feet and arms like tingling and had already gotten my Calcium where it needed to be so was able to stop supplements and calcitriol. So 5/24 had my labs drawn and since I read here about labs to be done this is what I had: tsh 0.56 (0.3-4), ft4 1.5 (0.8-1.8), ft3 3.0 (2.3-4.2), mag 2.0 (1.8-2.4), vit b6 10.0 (2.1-21.7), vit b12 433 (200-900), folate 15.1 (>5.4), ferritin 69 (10-120), vit D 13(30-100) (on supplements now). I was feeling ok except for the numbness and tingling, then it just went away. My PCP (primary care) was the one who ran these test. My endo saw me recently and checked my labs 6/17 tsh 0.05 (0.4-4.5) and ft4 1.5 (0.8-1.8) , so he decreased my levo to 125 mcg and while I’m not feeling too bad, I’ve started putting on weight and my hair is thinning. The reason I had my TT was due to Graves. I had a couple of small nodules that were benign. Overall I’m ok I guess tired sometimes but not too bad.
My labs after TT: Grave’s: Hi new here. Also in... - Thyroid UK
My labs after TT: Grave’s
Hello Reginarn and welcome to the forum :
Can you please edit your post to include the ranges relevant to all the blood tests - Thank you :
Just go to the More button - bottom right on this original post and press the Edit button.
It is essential that you dosed and monitored on your Free T3 and Free T4 readings and not a TSH reading - especially since you haven't a thyroid and with Graves as the TSH can stay low suppressed for months, or years, due to Graves antibodies sitting on TSH receptor sites.
When on T4 monotherapy we generally feel best when the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 60/70 % through its range.
Your core strength vitamins and mineral results need to be seen in context with the ranges.
It is early days and you need to just try and go one step at a time :
You have been through the roller coaster ride of high over range T3 and T4 thyroid levels and now right down the other end of the ' ride ' and primary hypothyroid with no natural production of T3 nor T4 and totally reliant on building back up your T3 and T4 levels with thyroid hormone replacement medication.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.
Some people can get by on T4 only medication.
Others find T4 seems to stop working as well as it once did and that by adding in a little T3 likely at a similar dose to that their thyroid once supported them with, they are able to restore T3/T4 hormonal balance.
Some can't tolerate T4 and need to take T3 only - as you can live without T4 but you can't live without T3.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids, dried and ground down into tablets, referred to as grains.
I have Graves but had RAI thyroid ablation back in 2005 and when I became much more unwell some years later ( consequences of RAI ) I found Elaine Moore - purchased her first book - Graves Disease A Practical Guide - and taught myself what was going on with myself as mainstream medical did not seem to know or be concerned.
Elaine now has several books published and a well respected researcher with a World wide following into all things Graves Disease and Auto Immune and is Stateside -
and now with a website and patient forum - much like this UK one - where you may find more local support from other people in your time zone and area code - and another support network you may like to consider.
Thank you for your quick response and the information. I will edit my post.
Golly - being in the States I thought you would still be asleep !!
Ha! It’s 5:45AM so getting ready to start my day, and that’s cause I’m off today 😑. Guess I didn’t sleep much anyway.
By the way, my endo didn’t seem to care about my T3 when I asked about it. My PCP on the other hand, she was willing to do all my labs when I asked her to, thankfully. But he’s the one who is dosing my levo. He also wanted me to do RAI instead of TT but from what I had read, and because I’m 51, I figured it would be best to just get the thing out since with my luck I would probably end up with issues again later and would be older and more at risk of complications. My thyroid surgeon was amazing and was like, yeah, your labs are insane and your thyroid is so large! Apparently I have Graves and had Hashimoto’s thyroiditis which is why she was like take it out. Plus all the symptoms I had, it was not good. I’ve put on about 15 pounds of the 50 that I lost. The other thing I didn’t mention is my muscles still ache.
Again, I appreciate the information and this site!
Have a great day!
OK - I'll take a look again now and see if I can help you with the above and consider yourself lucky to have swerved the RAI :- ncbi.nlm.nih.gov/pubmed/306...
They were really pushing for the RAI. I was not having it and just went and saw a surgeon who agreed with what I was wanting based on the results as well.
OK - so your TSH dropped from being in range at 0.56 in April to being out of the range at 0.05 in June and likely why your dose of T4 was reduced -
as your doctor is only looking at the TSH -
your T4 remained constant at 70% through the range -
irrespective of the drop in the TSH reading -
which simply highlights the stupidity / health risk to patient - of dosing and monitoring on a TSH -
your T3 in May was 37% and we don't seem to have a reading for June ???
So whilst your T4 is almost in the top quadrant your T3 is lagging behind -
and now with a dose decrease in T4 and the inevitable lower T3 -
you will likely be feeling worse with the insidious symptoms of hypothyroidism creeping up on you which include muscle aches. tiredness and weight gain - to name but a few !!
You lost weight with Graves - did your weight level off and you are now at a decent weight and this new weight additional and not wanted ?
As for the core strength vitamins and minerals -
I now know I feel best with a ferritin up at around 100 ( everywhere I researched suggested ferritin needed to be over 70 for any thyroid hormone replacement to work well ) -
B12 serum 500 ++ try and arrange an active B12 reading - it is much more reliable -
Folate around 20 and vitamin D at around 125 - which is where there is an obvious issue and for which you are now supplementing.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH !!
Hope this makes some sense.
I now know I feel best with a ferritin up at around 100 ( everywhere I researched suggested ferritin needed to be over 70 for any thyroid hormone replacement to work well ) -
I think there is a chance that the units of measurement for ferritin are different in the UK and the US. If I'm right then the optimal result in the US may appear to be different to what it is in the UK. If I'm wrong then just ignore me!
With respect to Serum Vitamin B12, I would suggest a result at or near the top of the range might suit some people.
perniciousanemia.org/b12/le...
perniciousanemia.org/b12/le...
And to choose a suitable B12 supplement :
perniciousanemia.org/b12/fo...
Why would I ignore you or anyone else come to that - without other forum members - I'd be totally lost.
You are correct - I didn't notice the difference in the USA / UK ranges and just went ' off ' on what had worked for me.
Thank you :
It's easily done. I've done it before with vitamin D.
It does make sense so thank you. Because I do feel more tired lately. So I know I’ve read about the desiccated replacement for T3 but can’t remember what it was called or how I would go about getting that. Any recommendations on a specific type and how much to take?
First off I think you need to get your vitamins and minerals optimal and find a doctor who will treat and monitor on your T3 and T4 blood test results.
You may find T4 works very well for you once you are optimally medicated - and it's the easiest treatment option to manage
Since you have ' lost your thyroid ' you have lost production of both T3 and T4 -
so it's likely you will 'do better ' adding back in a small dose of synthetic T3 - Liothyronine alongside synthetic T4 - Levothyroxine and then you can adjust each hormone to your unique set point - which is somewhere in the T3 and T4 ranges.
The 2 leading brands of Natural Desiccated Thyroid are Armour and Efra .
NDT contains a fixed ratio of T3/T4 - Armour is 1/4.22- T3/T4 - Efra 1/4.37 - T3/T4 with Efa said to have less fillers -
NDT works very well for many thousands of people - though some find this fixed ratio needs a little T3 or a little T4 added to it to adjust to their unique ratio of T3/T4 that gives them back their health and well being.
I think if I were you I'd speak to your doctor first and ask about why s/he reduced your dose and see if s/he has any understanding of Graves / post thyroidectomy and what other treatment options are available through your current surgery.
I would also post on the Elaine Moore forum asking for recommendations as to who other forum members have found supportive and who you might like to try and see in your catchment area - as this may well save you considerable time and money rather than starting off from scratch.
I’m right there with you about finding a provider who will monitor both. Seems hard though but I have to get on it. Thank you so much for this information. This site has helped me tremendously already!
please add ranges on all results
Was test done early morning and last dose levothyroxine 24 hours before test
I edited to add ranges.
Yes, I had it drawn around 0730 and my last dose was the morning before around 0500. I had read that here that was the way to do it.😊
Your falling into the issue with low TSH and the Endo is going to start reducing your meds and as this happens your body might start going crazy ….. I don’t know if you live in a state that allows you to test yourself if so Walk in labs is who I use to test my FT3 because Endo’s don’t normally test this they think its unimportant …. Biggest issue is menopause and TT usually ends with unwanted weight gain .
Hmm I would have to research to see about doing FT3 testing without an order. I’m 51 so most likely perimenopausal. I initially thought some of the symptoms I was feeling were menopause and ER docs said it was anxiety when I went in for the arrhythmias I was experiencing. I can get my PCP to order it I think though. She seems to go along with what I ask since she was the one who ordered all the vit level testing when I asked. Endo didn’t think it necessary or to test FT3 either.
Endo’s are pretty set in their ways as far as testing … Menopause and Hypo are a problem for a lot of us and often overlooked by Endo’s until we are so far in the weeds health wise that they actually consider the connection and maybe still won’t do anything about it because they are so TSH obsessed.
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