New results and I need help

Hi everyone. As i posted the other day to width me luck, I had my most recent dr appt with the newest Endo. I am looking for a new dr already. If i could just write my own lab orders and my own scripts I would never go to drs. So I went in and after waiting over an hr she told me i was good and needed to come back in 3 months for a recheck and to get my tests done again. No progress! Last visit August 8th, 11 days after last labs (which my last labs were ordered by me from my GP) which my TSH was almost 4 and climbing, free T3, 2.7 (range 2.3- 4.2) free T4, 1.1 (range 0.8 -1.8) & total T3, 86 (range 76 -181) at the point i was taking 50 of synthroid only and feeling terrible. She put me on alternating 50 and 75 mcg after that after me begging because originally she only wanted to give me one extra pill a week of 50mcg (taking 2 pills once a week lol I knew that wouldn't do anything.)

2 wks after that i still felt crappy and called and said please reconsider T3 with me. She agreed only if i would go back down to 50 synthroid instead of the alternating 50/75 every other day and she would prescribe 5 mcg of cytomel. I stayed on the alternating because i knew i shouldn't reduce with taking only 5mcg. So last week i got my labs done and seen her wednesday this week. Still alternating every other day T4 and taking 5mcg of cytomel. I feel better but still not great. My labs this time were Free T4 direct analysis 1.2 (range 0.8 -2.7) not sure the difference between T4 free and direct analysis??? besides different range. She did not test my T3 because when i called she prescribed it but wouldn't add that to my lab order!!!! And TSH....... and here i am confused! TSH hama treated 0.91 and TSH untreated 0.99 range for both listed as 0.40- 4.50!!!! I need all of your help. I told her i need more synthroid maybe 75 every day or most days and 10 of cytomel instead of the 5mcg. She said no!!! She said my TSH is too low! I told her it is suppressed from taking T3 now. She said no way. My free T4 is still low and of course with my labs from a few months ago with low T3s I'm sure they are still low seeing she only gave me 5mcg. Please anyone give me some advice. I still cannot lose weight, I know i am not optimal!

18 Replies

  • A local patient advocate told T3 had for her no effect until suddenly started working when raised 15->20

  • You need a new doctor. Even for a TSH-obsessed doctor your doctor is an idiot. Your TSH isn't even terribly low in range, and it certainly is not suppressed.

    I wonder if she wants it to be mid-range? It would be worth knowing what her treatment goals are. If you don't know what those goals are you won't know what you are up against.

  • I will not go back to her. I told her certain things i have done that i have proof are working and she said i don't believe in it. changed the subject completely. Her goal is to keep me sick! She is only paying attention to my TSH and wants it between 1 and 2!!!

  • i am afraid you are likely to need to go down the self treatment with NDT route

  • I don't think i want NDT. I don't eat any meat besides chicken and turkey very seldom. I used to be a vegetarian. I am not too keen on that idea so i do synthetic T3. Everything i read says T3 suppresses TSH and they should be aiming for my T4 and T3 frees to be at the top 25% range.

  • Obviously that is your choice

    I can only tell you that many many people find their only way fwd and resolution to their symptoms is via NATURAL DESSICATED THYROID that's been in existence for over 100 yrs as opposed to the synthetic T4 and T3 which simply does not solve everyones problems

  • I heard that it is better for some people but also some do not do well on that and i am afraid after making any progress that if i stop taking this and try that then do not do well i will have to start all over again. I was also told your labs are harder to gage and your progress on that because it contains T1, T2, T3 and T4 and the T3 is a higher ratio to T4 so a lot of times it is too much. My good friend developed graves' disease yrs ago and had to get her thyroid out unfortunately which she ended up on replacement. She did a lot better on the synthroid brand than the generic just like me but she ended up trying the armour which she ended up suffering hyper symptoms from that and did not do well. She said the only plus was she lost weight actually. So she went back on the synthroid. I was shocked that could happen being she no longer had a thyroid.

  • You're right, it's good for some but not for others. But, that has nothing to do with T1, T2 and calcitonin! Because there's no proof there's any in NDT, that would appear to be a myth. Even if the thyroid gland makes T1 and T2, it would be a tiny, weeny amount, probably not measurable, or else they would tell you on the label, just as they do the T4 and T3. T1 and T2 comes, for the most part, from conversion from T3 and rT3.

    As for calcitonin, it's not certain that that would survive the process of being made into pills. Even if it did, it would be a tiny amount, which - once again - they cannot measure or else it would be on the label.

    As to whether or not you need to increase your hormone, it's rather difficult to say, given that no FT3 was tested, and you cannot dose by the TSH - even less so when you are taking T3. You certainly can't dose T3 by measuring the FT4! There's no connection, and the FT4 is irrelevant.

    Neither is it possible to tell how you are converting because when your T3 was measured, it was the total, and not the Free. The Total gives no useful information.

    However, if you still have symptoms, then my guess is that yes, you do need to increase your T3. I really wouldn't bother with the T4. But, it would be better still to get your own private tests to know exactly where you are before doing anything.

    Re your supplements :

    easy iron (iron Glycinate which has Vit C, Folic acid and B12 with it and the iron in it is Ferrous Bis-glycinate),

    I do not like multis of this kind. For a start, iron should not be taken with anything but vit C. Folic acid is synthetic - methylfolate is better - so that makes me wonder which form of B12 is in it. And, also how much. Besides, B12 is best taken sublingually.

    They are now saying on the PA forum that B12 doesn't necessarily have to be up at 1000. Better at the level at which your B12 deficiency symptoms disappear. Whatever that may be! :)

  • The B12 is listed as CYANOCOBALAMIN. I want to get the book by Izabella Wentz, the root cause because i have read a lot of her research and love all of they info. Supposedly she has in there somewhere how and when you should take each supplement. I know calcium and iron cannot be taken closer than 4 hrs from T3 or T4 and you have to space them out from other supplements and vitamins too! It is exhausting! I take my synthroid at night and my Cytomel split into 2 xs. I take that when i wake up and 8 hrs later to avoid the late day crash i get. Greygoose can i just have you write a darn book for me to read and i can carry that around? lol I swear you know everything about everything! I thought i knew a lot until i joined this group!!!!!

  • Oh no! I do not know everything! lol Far from it. I doubt anybody knows everything, which is why forums are wonderful, because we pool our knowledge and experience.

    Cyanocobalamin has to be converted to methylcobalamin for you to be able to absorb it. And, being hypo, you will have a hard time doing that. Plus, cyanide isn't terribly good for you! It would be far far better to dump the multi and get yourself individual supplements. For B12, you want sublingual methylcobalamin.

    As I said, iron should be taken 4 hours away from just about everything - certainly from magnesium and thyroid hormone.

    Vit D and magnesium should also be taken four hours away from thyroid hormone. Other supplements, two hours away.

    You shouldn't really be taking calcium at all, unless you are very, very deficient. It's far better to get it from food. Taking vit D3 will increase your absorption of calcium from food, and that's why you should take vit K2 with it, to make sure the calcium gets into the bones and teeth, and not the soft tissues.

    I've never read Izabella Wentz's book, so I can't comment on that.

  • thanks a bunch greygoose, i am always counting on you lol

  • You're welcome. :)

  • All you can do is give the synthetic stuff a reasonable time and if you are not doing well its worth trying NDT

    My husband regrets wasting so many valuable years going nowhere on levo and for him theres absolutely no comparison on NDT life is worth living on levo or t3 he would prefer to be dead

  • when i was only on T4 it was bad! and when i first got diagnosed they had me on the generic synthroid which was even worse!! if things don't get better i may actually consider but T3 definitely made a difference! thank you

  • Where do you get ndt And whats the name of it im on lavo and my thyroid symptoms have never changed I have heard of a doctor that you have to pay out of your pocket for that when you get them

  • not sure about that. I take T3 & T4 synthetic meds, not NDT and i am in the USA. I would post a question for people to let you know that way. So many very helpful folks on here. Good Luck Theresa72

  • synthyroid and levothyroxine are the same only the fillers are different sadly many folk can only get well on NDT

  • i know but i had a very bad reaction to the generic so they aren't the same. The fillers made me nauseous and i had a terrible headache every day.

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