Hey guys, thyroid results have finally stabilised (thank the lord!) after three years of the most bizarre results so adding the T4 definitely worked and am starting to feel the benefits:
Blood tests were taken 6 hours after meds as done for my own purposes and on mostly T3 and too busy to start flaking out unnecessarily as happens if miss a dose for too long.
Interpretation of results:Deficient <25Insufficient 25 -49Normal Range 50 -200Consider reducing dose >200
CRP -HIGH SENSITIVITY 0.2 mg/l 0.00 -5.00
FERRITIN 33.9 ug/L 13.00 -150.00
So lack of T4 was the problem as been on T3 only for over 15 yrs and thyroid stopped producing T4 about three yrs ago - they became instantly erractic and nonsensical at the exact time I stopped producing T4 and remained that way for three years and have instantly stabilised after reintroducing T4 - so I can't believe for one moment it could have been due to anything else.
I have a few questions as I'm indecisive as ever lol!
Do you think I could get away with adding another increase of T4?
I have no real idea of how to compare the B12 results?? Previous results on normal B12 last time was 338 and had been steadily declining for no known reason. I don't know what the optimal range is for the active B12? Didn't order it on purpose - medichecks have changed them all to include the active one.
Iron has finally stabilised too and stopped being aneamic since adding the T4.
Vit D was over 60 a few months ago and I've made extra effort to be out in the sun, have tried taking some every now and then and just recently had a two week sunny holiday so no idea why this keeps going back down.
Still have no idea why folate won't budge - get more than enough from my diet but still never budges from this level. In fact it's slightly lower than the last one.
I haven't been able to tolerate anything since I had no T4 in system - vits/supplements made me toxic after a few days with severe side effects even though low or deficient, T3 made me so toxic even though tsh raised. The docs and me had no choice but to keep me on low dose and high tsh for the past year or so. Basically it felt like my body was unable to process much at all and therefore didn't want it or it just accumulated. I've stopped being aneamic naturally with no meds and my ferritin has levelled out. Blood count is near on perfect. I'm going to try some of the vits again and see if I can now tolerate them to get them more optimal. I'll take some iron for a month just to get the ferritin optimal. I will obviously correct the vit D now as heart rate is speeding up again which I always get when Vit D deficient or under 50.
But what do I need to do re the B12 as this results means little to me - how much and how long? I will take the b complex alongside which has folate in it.
Still don't truly understand the antibodies, not sure how they can be that high when thyroid doesn't function at all, is pretty much dead and doesn't do anything. TPOs have come down a little in the past few months but thyroglobulin has gone up.
Thanks in advance for any suggestions
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Saggyuk
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B12 is low... you need injections methylcoblamin is best, hydroxyocoblamin (i think I spelt that right) is next and if poss, stay away from cyanocoblamin , this is synthetic and can cause reactions. You can be symptomatic with low b12 under 350pmol FT3 has room for increase if you need it but sort out vitamins first. You also need vitamin D replacement tablets - ask doctor to prescribe as yours is low. You need your measures to be between 100-125 nmol/L (40-50ngml). Basically, I think you should go back to the doctor
Vit b12 - please be careful hellybaybee , the result here is active b12 not the previously normal serum b12. The figures of 500 and below for potential issues only applies to serum b12. The range is totally different.
First - cold you take more t4? There is no indication in your tsh/ft4 and ft3 to say you couldn't, especially as your numbers are probably reading falsely high with meds taken only 6 hours before test. "done for my own purposes", timing does matter if you want to be able to judge anything from ft4 and ft3 figures. Less than the recommended gap and you will not have a baseline level in your blood. The recommendations are not just about showing tsh as high as possible for a doctor, they are also about having a true, comparable level in your blood. I would recommend you stick to the guidelines regardless of who the tests are for.
Second - nutrients. Your issues with declining nutrient levels would suggest that you have an absorption problem. Are you gluten free? If yes, have you considered other possible intolerances such as dairy? Have you tried either betain/pepsin or apple cider vinegar? Are you on any acid reducing meds? Do you abide by the timing gaps for food, supplements and other medication from thyroid meds?
Vit b12 is adequate but not great - serum b12 to active b12 can't be compared directly I believe, but I would guess it makes sense to keep active b12 close to top of range as well, especially since your previous serum level was inadequate. I think you should use sublingual b12 to bypass absorption issues and probably 1000 per day would be enough to help bring it up, alongside a good mixed B should help that. Whilst that will also give you folate, you might consider adding a bottle of methylfolate supplement. None of this is about adequate diet, even with an excellent diet many hypos have serious deficiencies and need to supplement.
Vit d - you really need to supplement this. Us hypos have some unidentified oddity in vit d production, storage and use that means that sun exposure doesn't seem to raise levels as much as in others. I live in a land of extreme UV levels, with plenty of sun every day, and my levels still don't budge. I am still struggling to raise levels at all, even with 3000 iu per day my levels have not budged in 6 months. So I m now having to take 9000 iu per day to try to lift it. So don't rely on the sun. you need to supplement and keep it up with a maintenance supplement dose even after you reach the 100-150 recommended by the Vit D Council. It is important to take vit k2-mk7 and magnesium supplements when taking vit d. See SeasideSusies posts for more info.
Ferritin - level really needs to be a minimum of 70. optimum 100-130. It will take more than one month to reach these levels, even if you had perfect absorption. Make sure to take each tablet with 1000 vit c to maximise absorption and minimise gastric issues from this. Can take more vit c with each if you still have issues (I have to take 2000 with each to counter). It is important that iron is kept 4 hrs away from anything else.
Third - anti-bodies. I believe that the level of Tpo shows the degree of severity of an immune attack - high Tpo current or recent attack, low no attack. Tg shows that dying thyroid tissue has released proteins into the bloodstream. So high levels indicate that there has previously been a "successful" attack. So even with little thyroid activity, high TgAb can be a shadow from previous times. It can take years for these to decline in the blood. I wouldn't get hung up on these levels, as they fluctuate over time anyway and evena scrap of thyroid can still be attacked.
So, in summary, I think you really need to look to your digestive system and absorption issues to improve the situation. Without doing this, you will continue to struggle with nutrient levels. This would only maintain the vicious circle you have been caught in where you can't raise thyroid hormones because your nutrients are low and you struggle to tolerate supplements to raise nutrients because your absorption is low, hence you can't raise nutrient levels to allow you to raise thyroid hormones.
I normally do blood tests about 8 hours after meds as T3 levels always drop too low if left it too long - prob because was on T3 only. Not had much experience with Levo so not sure yet how it is effecting results for me yet but it was mainly because I thought I was a little overmedicated as had increased T4 on a tsh of 1.53 before this and heart rate had gone up far too much and have been too wired to sleep so didn't want to leave it too long after meds to see exactly where I was but it's clearly not the case and I think just needs time to settle maybe. The Vit d had shot up to over 60 on the last test after starting back on T4 without supplementing so wasn't expecting that to come back low but that is why my heart's too fast and not because of too much thyroid hormone so was mistaken. I am having another test with endo next month so will do the normal 10 hours after t3 though and maybe see what they are like in regards to increases.
I had major digestive issues and absorption issues from when I was a little girl and was always under range in regards to vit levels and treatment would only ever get me to the bottom of the range - I was pretty much on permanent treatment for iron anaemia. I then went GF 4-5 years ago and my vit results are much better since then so def had absorption issues but no longer any indication of that as no more stomach problems or issues in that department although I may try and look for other intolerances as you suggest just in case. No other meds or anything for stomach as no longer any issues. Although I don't think absorption is an issue anymore because I clearly absorb the supplements as have had toxic type side effects - just couldn't seem to do anything with it??
After a year or so of feeling amazing on GF, reversing other autoimmune conditions and good vit levels without supplementing (even had to drop my dose of T3 dose quite a lot), I did a few gluten trials to get an official diagnosis and this is the point where my thyroid appears to have ducked out permanently and stopped producing anything of it's own - took me a long time to realise this though as had historically paid no attention to T4 levels. I tried my best to keep taking the right amount of T3 so didn't become hypo but ended up with many physical indications of being hyper and results like this over the three years:
TSH 2.95 T4 <3.2 T3 6.8 (3.3-5.3)
TSH 3.8 T4 <3.2 T3 6.9 (3.8-6)
TSH 4.56, T4 <3.2 and T3 6 (3.8-6.7)
As you can see the tsh just got higher and higher regardless of enough T3 with the last tsh coming back at over 10 and gave up in the last year as literally vomited if took more T3 and felt far worse than if kept myself hypo. Have been unable to take any supplements in the last year or so also without similar adverse effects. I have been severely hypo at times in the past and never had a problem with taking supplements so it's a little bizarre - I am hoping I can tolerate them now but we'll see what happens over the next week!
B12 - that makes sense so nearer top of range. Will start this and complex today.
Although Iron levels have now stabilised, I can see that the Vit D is not staying up of it's own accord so will keep what you said about this oddity in mind and just keep supplementing this one. The one I have has K2 with it anyway. I will take the iron until levels are optimal rather than just one month so will retest and actually check it. I have all the magnesium and such as kept trying to solve the issue earlier in the year thinking it might be being caused by other things being low but couldn't take these either.
I know I shouldn't get hung up on the antibodies - they just bug be as been nearly thirty years so should have just stopped by now lol!!!!
Many thanks for your reply, I can be soooo indecisive when it comes to what to do next especially where everything I've tried has had a very negative outcome in the past year lol!
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