So this is really just a snapshot blood test. My Endo told me to get one done 4 weeks into adding 10mcgs T3 to my 125mcgs Levo. My next step is to reduce Levo by 25mcgs and add another 10mcgs T3. This he told me to do without even seeing bloods, but having seen these I think I might be reducing Levo by too much?
Levo last taken 24hrs before test. T3 5 mcgs last taken 10 hrs before test. Test at 9.15am fasting. Dairy, gluten and soy free.
TSH .15 (.27- 4.2)
FT4: 18.4 pmol/l (Range 12 - 22) 64.00%
FT3: 5.04 pmol/l (Range 3.1 - 6.8) 52.43%
B12 - max range, now injecting.
Folate 19.8 (3.89-20.58) Had to take 1800mcgs to get there!!
D3 161nmol/L ( 50-200)
Ferritin 137 (13-150) Thanks iron infusion 😍
Really, really chuffed to see my CRP level dropped from 16.83 to now 4.72 (>5)! I am crediting the folate and B12 for doing this. My level was getting horribly high and I was told I had an infection, but weirdly had no clue as to what was causing it or what of, so no treatment.
So taking the Basic B complex I really didn't feel any different, have been weak and housebound now for 9 years. Switching out the complex for a folate capsule for the last test I felt the difference + my level was still low (it only went up by 2 points) so I added slowly and gradually until I felt it was right. Which brings me to genetics and it turns out I have a gene called FUT2 (an enzyme required for vitamin B12 absorption), also another which causes slow metabolism of B12. So I have started self injecting B12 with early, but noticeable effects. Perhaps Ive had a functional B12 deficiency all along? Saw GP yesterday about other things and mentioned this and she's contacting the local haematologist for advice but was at least helpful and said she could do an IF test and MMA although had no clue how to interpret it. I'm not really holding out any hope of a diagnosis and since I can manage without the NHS's poor and extremely late(!) B12 treatment anyway it barely matters.
So any thoughts on my FT4 level if I drop another 25mcgs? I know that 4 weeks might not be enough for stable levels but would welcome input.
If you're still here, then thanks for reading. 🥰
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Really not sure of his rationale, and now thinking I should just have waited another at least 2-4 weeks. Can always get another test booked in in a few weeks and do nothing for now.
A combination of things really. Lack of response to Basic B complex for one. I have a multitude of neuro symptoms, fatigue and weakness keeping me housebound.
I did a lot of reading about B12 diagnosis and testing which basically points to it's unreliable to say the least. I also happen to have my DNA raw data to search for SNP's.
Thanks for sharing. I've been interested in the MMA test for some time but have put it on the back burner due to it being costly. My b12 levels have been always good but I have issues with my MCH and MCV levels. Its been pointed out to me on here awhile back that it could be due to low folate or functional b12. The Thorne basic b has improved my levels but still dealing at times with the mcv or mch.
My fatigue and weakness also keeps me housebound as well but I'm thinking it also has to do with my sleep apnea. In in the process of trying to improve it with a mandibular advancement device
I have sleep apnea too, treated with APAP and believe me it doesn't cause that level of fatigue and weakness. Groggyness and a bit hung over tired feeling and needing a nap possibly, many people are working when diagnosed. My AHi on treatment is 0 - 2.5 although it did go up a bit occassionally to 11 a while back and then they put my pressure up so it's back where it should be.
I started at a lowish pressure with a diagnosis of mild OSA but more recently they've had to put me up to a pretty high pressure and when I was in ICU a while back they struggled to keep me oxygenated. Been told never to nap without the APAP. So it's got worse over the years.
My B12 level always looked good so I didn't suspect at all it could be causing an issue, but that's where their B12 deficiency tests fall down because I don't think I do have a deficiency at all, just either my body can't use it or I'm not absorbing it well. You could always experiment a bit with a high dose sublingual and see if it makes any diference.
Majority of the group in the sleep apnea fb I belong to mention extreme fatigue, so I dont think its that black and white. Sorry to hear about your time in the ICU. I'm glad to hear that your treatment has brought down your levels.
Thanks for the suggestion of experimenting with higher doses. I've tried in the past and my limit is around 500. More than that and I get a racing heart/chest pain.
I see that you have sleep apnea as well. Are you in treatment? How much is your AHI? Mine is 11 per hour. Would you say that your fatigue has lessened on this dosage or do you feel the same? I'm hoping to God my fatigue levels improve when I reach over 60% in my free t3 levels, God willingly
4 weeks after the addition/ increase of T3 (any hormone) isn't really long enough to find out how well the T3 has settled into your system...usually takes at least 6 weeks....but you know that.
I wouldn't reduce your levo from 125mcg when you next increase T3....adding T3 will naturally reduce FT4 and TSH
Adding 10mcg T3 is rather much.....5mcg at a time is usually advised.
Small increases help avoid missing the sweetspot....you may not need an extra 10mcg!
Suggest you test after 6 weeks on 125mcg levo + 15mcg T3
Adjust dose, if necessary, after testing.
Your endo seems rather cavalier in altering your dose based on neither lab tests or clinical evaluation
Optimal vit B12 is required to support thyroid function you are doing well there!
It's so easy to look at someone elses results and see what might or might not be a good idea to do. When it comes to my own I'm so uncertain, plus really I'm not at all well, terrible cognition etc so yeah. 😆
I'm away for a few weeks coming up so it will be a wait for new results but I'm ticking along at the moment so no biggie. I assume the Endo has done T3 additions a few times before so thought he had a feel of what I might need based on previous Levo dose but we are all different and we all know how wrong Endo's can be!
My face was breaking out with rashes and peeling skin, as were my hands and since the injections that has all mostly cleared up. Not a coincidence I don't think. Will still be a long time before I'm anywhere near normal functioning.
Oh and when I added the 10mcgs I did that in 2 weekly stages so not a huge jump in one.
Just had a call from my GP and the Haematologist has authorised her to do the tests. Let’s face it though they haven’t known what to do with me for years. Just have to hope they might show something now!
Hi Jaydee1507,I've been trundling through the site and have come across this post - the part about the genetics caught my eye and I checked a dna test I had done two years ago - and I have the same FUT2 gene affecting B12.
Do you have any insight into the implications of this, for yourself or others?
You mention functional b12 deficiency, could you explain that or point me to more info?
Did you ever get any further with the gp and MMA and/or the local haematologist? Sorry if you covered that elsewhere.
Be aware that I have a very foggy brain and details are not my strong point. I found this that gives some explanation but it was more than FU2 that I had anyway. I'm trying to remember but it was more of a functional issue with B12, it's metabolism.
Anyway, only the homocysteine test got sent off, the other had to be done at a hospital apparently. It came back negative but I was well replete with folate by then and also B12. So maybe if I had tested pre folate even then things might be different. I do understand from B12 groups that no one test is definitive anyway. The haematologist wasnt interested and I got a lecture from the GP about self treatment.
The thing about these genes is that you can have them but they have not been activated. There's certainly a few that I have for autoimmune gastrointestinal conditions that I don't currently suffer from. The difficulty is in knowing whether or not the gene is activated. Or not.
Ah, I retested after about another 7 weeks due to being away and my FT3 had dropped to 30% of range which was quite amazing. So this test was definitely done too soon at 4 weeks. I added 5mcgs T3 so then was 125 T4 + 15T3. Initially I felt a bit worse, a lot more cold all of a sudden, but as time goes on its settling in. I have a raging case of inertia which I'm conveniently blaming on the horrible cold, wet, damp weather but I would be struggling to do much if it was warmer I think but might at least feel more motivated about it.
I have actually taken the plunge and booked myself into a free online 10 week pilates course. This is so I HAVE to do some exercise and be accountable for it to an extent. 😆 That is quite a leap for me and I'm fairly confident it will be OK as is run for people with hEDS disability issues so hopefully not too much competition from the seriously athletic types and noone will mind of I flake out at any given point!
Basically I feel like I'm better equipped to tackle making a start on doing something physical and that in turn will help. I had a terrible almost non existent sleep last night but thats nothing new although haven't been like that for a while. Still a very long way to go.
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