Please help with latest BH test results after trying mixed T3/T4 therapy

I am looking for help with understanding my results and advice as to what to do next. My inability to concentrate is preventing me from thinking the problem through! My potted history is: I was diagnosed hypothyroid 11 years ago and have been on T4 since. I have always taken a slightly higher dose than my GP was happy with (based on TSH) in order to have enough energy to live and work. Over time I have developed a number of other problems which I believe are linked and last year developed lichen sclerosus and painful feet (lumpy and unstable ligaments) and thought I should take some action. I also found Health Unlocked. I asked for a referral to an endo, who, when I saw him, said he might prescribe T3 but first wanted me to take Vit D. After he got my blood results however, he wrote to GP and advised a reduction in my T4. So I became very hypo and when I finally had my next appointment in January he reinstated my T4 (125/150 alternate days) but refused T3. I asked whether there was a medical reason in his opinion why I should not take T3 and he said no. I sourced T3 privately and began a mixed regime in early February, gradually increasing T3 to 25mcg in 3 doses and reducing T4 to 50 Mcg at night. However, I do not feel better on it, although my blood pressure is lower and the lichen sclerosus seems less rampant. I have been taking supplements as recommended on this site and elsewhere including Vit d B12 selenium thiamine, and have been following a gluten free diet ( with some mistakes) since autumn. I had a BH test done last week and have received these results:

Tsh. 0.01. (0.27-4.20)

T4 total. 40.6. (64.5-142.0)

Free T4. 7.46. (12-22)

Free T3. 7.61. (3.1-6.8)

Anti thyroidperoxidase abs. 20. <34

Anti thyroglobulin abs. <10. <115

All the thyroid results have come back highlighted in red.

I am so miserable and feel so rotten that something needs to change, but I don't know what! I am about to start Isabella Wenzt AIP diet.

Please help!

17 Replies

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  • Hi - could I check timing of your last doses of t3 and t4 prior to the test? If t4 was 24hrs and t3 12 hrs then you are over-medicated and need to reduce your dose. If it was less than 12 hrs from t3 then you might be ok.

    Over-medication can cause similar symptoms to under and i certainly can find them difficult to tell apart. If you are over and reduce your dose for either t3 or t4 you may well start to feel better within a couple of weeks.

    Some people also find that they need to have a higher ft4 than yours to feel well. If you are not actually over due to timing of doses, then it could be that you need to increase your t4 a bit and reduce your t3 in proportion.

    Gillian

  • Hi - the last T4 dose was 36 hours before and the last T3 12 hours before

  • Well in that case you are slightly over-medicated as your ft3 is over range. When did you last change your dose of both? Whilst your total current dose is not much different than the t4 only you were on previously you might be either a bad converter so t3 has more effect or you may have improved your conversion with nutrient improvement (that happened to me recently) so you need less now than you did then. In either case you should probably reduce your t3 a bit, maybe by somewhere around 5 mcg (I had 25 mcg tablets so reduced by 1/4 or 6.25) and hold for a couple of weeks to see how you feel. If no improvement then I would be inclined to reduce a bit more again and re-test after maybe 3-4 weeks. This is all assuming you haven't reduced your dose of t4 within the last 6 weeks as that will take a while to reduce in your system fully.

    Gillian

  • I have reduced my T4 as t3 increased. I think I last increased about two weeks ago, an additional 6.25. I will decrease by 6.25 for a few weeks - but what should I do with T4?? I'm really struggling. Every afternoon my temperature drops to 35.0 and I am completely exercise intolerant.

  • Exercise intolerance can come with either under or over - I started to get tired again when I went over and am still struggling a bit to distinguish over/under. The difference with me that I can tell is sleep - too much when under and struggle to get to sleep when over, but everyone is different with symptoms so you may not be the same. Temperature is very variable to the individual, with some of us just cold. Have you considered that your adrenals may have struggled to compensate for hypo and may now be tiring? Sorting thyroid should support these and enable improvement if these are an issue.

    So if you decreased your t4 2 weeks ago then that might still be going down. How did you feel before that last increase/decrease? Since it is only 2 weeks you could hold at current for another couple of weeks to see if you change as t4 gets used up a bit if you can bear it. If not, then dropping t3 for a couple of days and then re-introducing at the lower dose might speed up the process a bit of going back down.

    I am afraid it is probably going to be a bit of trial and error at this stage to see what suits you as an individual. People need different t3/t4 ratios or only either one variably. You are neary optimum on these results - but remember it may take up to a few moths to feel better after your blood shows good results. You didn't get hypo over a short timescale and we don't always get better quickly either. Keep working to optimise your nutrients, identify your own particular intolerances and see what happens. It may be that you are one of the people who needs to consider other options such as NDT, but I would try to sort your current meds first before considering that for ease of supply, etc.

    Good luck

    Gillian xx

  • Thanks Gillian. It helps to know I could be under or over.

  • Did you get any benefit from the addition of T3 at all?

  • My blood pressure seems to have dropped - it wasn't high before, but seems low now. My lichen sclerosus hasn't flared up since I have been taking the higher dose - I don't know whether these things are connected. I get up fewer times in the night to pee. Apart from that, I don't think so. I certainly don't feel better overall. Could I be undermedicated?

  • You were taking 125/150 mcg Levo and are now taking 50mcg Levo and 25mcg T3. I think the T3 substitution you've made is a reasonable one.

    But your Free T3 is surprisingly high. It's as if your body isn't really using your thyroid meds much at all.

    I can think of two possibilities.

    1) Your body can't handle synthetic hormones at all, and you should switch to NDT.

    2) Your body can't handle T4 at all and you should try T3 only.

    T4 in the body is converted into T3 and Reverse T3. In some circumstances the body will preferentially make Reverse T3 rather than T3 e.g. if you get flu or some other illness. In healthy people, once the body recovers from the illness, normal service is resumed and Reverse T3 will reduce as T3 increases back to normal.

    In some people the ratio of Reverse T3 to T3 gets stuck making too much of the former and not enough of the latter and people feel hypo.

    In order to make Reverse T3 the body needs the raw ingredient which is T4.

    If you remove the source of T4 (Levo in your case, plus some from your thyroid if it still produces any), then the Reverse T3 will reduce, possibly down to zero or nearly zero. You would need to take T3 only.

    Some people produce too much Reverse T3 when they take synthetic hormones but do well on NDT. Some people produce too much Reverse T3 even with NDT and have to take T3 only.

    There are some people who have a condition called Thyroid Hormone Resistance. This is another possibility for what is happening with you. In this condition the body needs much larger amounts of T3 than normal just to keep going. An example is the late Dr John Lowe, who gets mentioned on here quite often. He took 150mcg T3 every night for 25 years and thrived on it.

    Which of my suggestions you follow (if any) is up to you. But since you already have some T3 I would suggest, just for convenience, that you try T3 only, assuming you have enough for the experiment.

    For future reference, T3 is believed by many patients to be 3 - 4 times as potent as T4. So 25mcg T3 is equivalent to 75mcg - 100mcg T4.

    If you do suffer from Thyroid Hormone Resistance you may need more T3 than the numbers suggest.

    Always keep tabs on your basal temperature, get yourself a blood pressure and heart rate monitor, use it regularly, and take notes of dosage and symptoms.

    Also be aware that many patients find that heart rate rises when T3 is running out and a dose is due or overdue, and will then find the heart rate reduces when the dose it taken.

    But the fly in the ointment is that heart rate will also rise if T3 dose is too high. Working out what your body is telling you is vitally important, but can be quite difficult.

    Please note that doctors think a fast heart rate is always a sign of over-medication. Many of them seem oblivious to the fact that heart rate also rises when a dose of T3 is due.

  • Thanks for this comprehensive reply Humanbean. I feel a little overwhelmed by the possibilities. I am going to have to think hard about my next step because I want to do everything possible to avoid feeling worse. Do you think a test for reverse T3 is worthwhile?

  • I wouldn't do a test for Reverse T3 just yet. Since they are so expensive my personal choice would be to leave it until I had no other choice, but then I do tend to be ultra-careful of the pennies.

    To add to my earlier long reply...

    It is possible that I was over-complicating matters and you were just over-medicated on T3 with these results :

    Free T4. 7.46. (12-22)

    Free T3. 7.61. (3.1-6.8)

    If you were over-medicated on T3 then the Free T4 you had (from your own thyroid or from Levo) may have been converting into Reverse t3 and making you feel more hypo.

    I would suggest you try switching to T3-only for a while - perhaps 3 months? - and see how you get on.

    If the T3-only trial doesn't make you feel better or well, at least if you then trial NDT you won't have lots of Reverse T3 to contend with to make the beginning of the NDT trial more difficult.

  • SeasideSusie has written a post on Reverse T3 with some very useful links :

    healthunlocked.com/thyroidu...

  • Thanks humanbean. I have read it and as with everything ive read I dont think my readings fit with the problem outlined. Still confused!

  • Reversal T3 (high) comes from low iron . Test Iron level and Ferritin before adding Iron . And everyone has RT3 . But if it's high that's when you start looking into Iron levels .

  • My sympathy to you . You sound like you still have hypothyroid symptoms . You are not even mid rang on any of your TT4 FT4 FT3 . You will need to go back to your Endo/Dr and ask for increase with your hormones . Make sure you don't do labs for six weeks after you start with new doses . And make sure you split your T3 hormones only 2or3 x/day T4 is once a day . Do labs at least 6-7 hours after the last dose . Iron and calcium take four hours apart from thyroid meds .

  • Hi - thanks for sympathy! My T3 reading is out-of-range high though - I have enough T4 meds to take the dose I have been on for years so dont need to see GP. I am still pondering the meaning - all I can think is that I am taking too much T3

  • Do you split your dose with T3 ? How many hours after dosing with T3 do you run labs ?

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