End of the road?

End of the road?

I seem to have reached the end of the road with my endo. At my appointment today she refused to increase my T3 to a higher dose because the TSH is so suppressed, she was willing to increase the Thyroxine but I would have to decrease the T3 then. She goes by TSH alone, still thinks the pituitary is saying there is too much Thyroid hormone in my system and has hinted that she may not be able to help with my symptoms by trying to replace the missing Thyroid hormones. I am still on 25mcg T4 and 30mcg T3. Both are from Henning-Sanofi, and I found that after changing my T4from Mercury to Henning that my TT4 and FT4 went up so I gather it may be more potent? FT3 though has dropped, again. ENdo suggested I get a second opinion so will refer me to another Endo. As I presented her with the results of my BH SAliva Cortisol test (which shows high levels, well above reference ranges, in 5 out of 6 tests) she agreed to do a 24hour urine testto see if that is high as well. My fasting glucose has been going up over the last year as well, my cholesterol is slighter raised as well. This all tells me something is not right, but we parted agreeing that we don't quite agree over a complicated issue. I am now not sure what to do, should I increase either T4 or T3 before I see another Endo, knowing nothing much will change and I continue to feel crap, and it will probably take a considerable time before I get another appointment. Have included a copy of my results, and any suggestions will be greatly appreciated.

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18 Replies

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  • How long was your last dose of T3 before the blood test?

  • Did you have your blood test at the very earliest possible, fasting (you can drink water) and did you leave 24 hours between last dose and test? If not the results will be skewed.

    However, your combination of T4/T3 is unusual as I have read that a 3 to 1 combo has been proven to be best. If you go to the page 80 and on the top left-hand para you can read about the research.

    It is quite difficult for Endocrinologists to now prescribe T3, due to the new guidelines that only levothyroxine is to be given.

    However, you can source your own T3 and begin with a low dose and gradually increase.

    If she is fixatedon the TSH you will not progress.

  • I kind of disagree maybe :-/ I've been on mostly T3 for fifteen years and if I left it 24 hours, my test would be way off as my T3 level drops quite quick and then become hyper if dose increased on the back of it. Maybe it's just me and everyone's different but I personally wouldn't leave it more than 12 hours overnight but maybe I'm doing it wrong??

  • I think I've read that if on T3 only, 12 is sufficient but I leave 24 and am on T3 only too as I get a morning blood test and take T3 a.m. I go by how I feel rather than blood tests and GP is happy with my results.

  • Thanks for reply, but I am unsure what you are referring to 'page 80 top left hand para...' can you let me know where to find it, please?

  • My apologies :) I didn't give the link. This starts at page 75 so cursor down to page 80.

    tpauk.com/images/docs/reduc...

  • Found it! Printed out the whole paper - very interesting indeed. Thanks!

  • Thank you shaws! I will present this to my GP since she insists my TSH is too low and surely that's the main problem.

  • I am on the exact same dose as you funnily enough 30T3 and 25 T4 but only because I can't convert and then had to add a bit of T4 back in recently since I stopped producing any of my own and had some weird new symptoms.

    I would say that I don't know of many endos who are likely to increase your dose and if you get referred to another, you do risk getting someone not willing to keep you on that dose with a low tsh or not willing to prescribe T3 at all. It might be best to stick with her and source a little of your own?

    Maybe it's other issues, have you had recent blood counts, have you checked diet for possible deficiencies not normally tested for, have you tested blood sugar levels etc?

  • Thank you for all the replies! I have always tested at 8.30 am, fasting, no T4 since 8am the day before and last T3 at lunchtime the day before which makes it about 18 hours. Was on 125 then 100 Thyroxine and Endo said I had to reduce T4 if I wanted T3 added. So first it went down to 50 T4 and 20T3 then to 25 T4 and 30 T3. I do know about the ratio of 3:1 and wondered myself, but found it impossible to even discuss it because she always came back to the suppressed TSH. I am unsure now if I should try and medicate myself with that ratio.

  • Well, having left it that long, other parts of the day or after your dose, you would prob have slightly higher T4 and T3.

    How do you take your meds - do you take all the T3 together?

    What exactly are your symptoms?

  • I take T4 at bedtime, 10mcg T3 early, at 8 am, second dose at 12 and third dose at around 4.30 pm. My weight is going up again, slowly but constantly, but I am on a good, clean diet (gluten, dairy and grain free, lots of bone broth and veggies etc) Joint pains, carpal tunnel syndrom back as well, thinning hair, gritty eyes, fatigue, feeling exhausted and often a very low mood.

  • Okay, well I have a suggestion based on my own experience although might not be a popular one lol. But I am suggesting the possibility that you could be over medicated based on the following:

    My T3 drops by at least 2.00 if I do the blood test 16 hours after my last dose - I have tested this out a couple of times in the past 15 yrs which is why I don't bother fasting for this length of time. My endo is happy with suppressed tsh so I don't have to worry about this aspect anyway. If you are like me, this would put your T3 at 5.92 or higher at other times of day which wouldn't seem so bad?

    When I am a little over-medicated, I get the exact same symptoms you mention - fatigue and exhaustion, low mood, funny sensation in my arm and joint pains - it is only when I'm highly over medicated that I get the additional sweats and heart issues (like when I gave up gluten and had to half my dose from 60mcg T3 as could absorb more and nutritional deficiencies improved). There is very little between my slightly hypo and slightly hyper symptoms apart from I always get a headache when hypo. My weight has not normally gone up or down as expected with thyroid either - I have been extremely skinny under medicated and larger when slightly over-medicated.

    From reading your posts, I can see you also gave up gluten in the past year or so and have corrected many deficiencies in the meantime which may also mean you possibly have less requirements for thyroid meds as maybe using them more efficiently like myself.

    Your T4 results seem strangely a little on the high side for someone mainly on T3 only and taking only 25mcg T4. My T4 has never gone anywhere near as high as this so it seems possible you are still producing your own T4 (unlike me) on top of the meds you are taking even though your tsh is very suppressed and body not requesting it. I can see you have had issues with high Rt3 in the past which is made from excess T4 so have you had these rechecked recently to see if has become an issue again? - maybe this is a separate issue that can be ruled out also? I can see your previous T4 tests came in at 6.8 and 8 on the same dose so possibly something going on there now it is over 15?

    Anyway, I'm not suggesting this to be definitely the case as my body will be different to yours and maybe my reactions are not typical - just a possibility you might want to rule out as had a similar issue to you and if you feel worse if you take more and continue to get nowhere with figuring it out lol? And if you do decide to decrease a little to check it out, I don't mean for you to tell your doc as they may never put it back up again if your results come back in "normal" range and it might not work ;-)

  • Thank you so much for your thoughts and suggestions, it has given me a lot to think about. The raised T4 in my last test surprised me as it had been going down before, but I did change to Henning L- Throxin, maybe it is more potent? RT3 was also something I thought I should maybe test again, the cost is just so much more than other tests. I wonder how the high cortisol fisin to allofthis. My nutritionist commented that that also stops conversion of T4 to T3, and it puts the weight around your stomach as has happened over the last months. Everything I lost last year after going onto T3 ( 5kg in all) has gone back , on my abdomen.

    You have been very helpful and I am going to take on board what you suggested, makes me feel a bit more confident, at least. Thank you for your time!

  • Well, high cortisol will increase blood sugar levels and will also lower tsh and lower conversion of T4 to T3 and put weight around your middle. I would concentrate on figuring out the sugar levels/cortisol levels first as these two are interrelated and can affect each other and go round in circles with both increasing the other and can cause fatigue and so on.

    Maybe you can get a cheap blood glucose test pack from the pharmacy for approx £20 to test for a few days and see how stable your levels are throughout the day for a more in depth look. There are things you can do to help stabilise your blood sugar levels such as eating 5-6 smaller meals more regularly, changing the things you eat or the way you eat them according to glycemic load (google glycemic index) and so on. Also, just to rule out the more basics first, are you eating too much sugar/refined carbs/processed food or even more basic - are you actually eating enough? If you are not quite eating enough, cortisol can increase to stimulate formation of more glucose and so on.

    As well as trying to stabilise your blood sugar levels through diet, you can also try and decrease your cortisol levels by relaxing more and drinking less caffeine.I'm sure you can google other ways also :-)

  • In your position I think it is time to think about self medicating. Otherwise it's just a roll of the dice whether this new Endo will help you.

    These blood tests look undermedicated. The rule of thumb is that you want the freeT3 to be in the top third, but yours is in the bottom quarter. In my experience it takes quite a large increase to move from the bottom of the range up to the top.

    It's taken me the best part of a year to move mine a similar distance. And personally I felt terrible at the bottom of the freeT3 range.

  • Thank you, I have been toiling with the idea. I tink I will look at the dose I started on last year when I began to feel better, less symptoms etc. and then try to get to the ratio of 3:1 (T4:T3). This forum is more helpful than any doctors I have so far experienced. 👍

  • Elkewilliams, my belief is that trying to copy a particular ratio is a bit of a red herring. There are people on the forum who are very well on T3-only, and some on NDT and many other possible combinations. It's more a game of trial and error to find out what happens to work for you.

    As your freeT3 number is quite low, the simplest solution is to raise it to the level that most people feel well at, and see if you do too. If that doesn't work, the next step is to look for more complicated solutions.

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