Does my endos comments make sense?

Just a quick question. I suppose it it embedded in me that doctors / specialists etc know everything there is to know and that to question them is just plain foolish.......but. My endo said to me that because my TSH was surpressed at 0.03, my T4 is in top 1/3 and my T3 was below range that my body didn't need anymore T3 hence it wasn't converting the T4. He said that conversion issues are nonsense. As some of you will know he gave me T3 and reduced T4 and after 8 weeks I had a test and my T4 was below range at 8 (10-19) and T3 just hitting bottom of range at 3.7 (3.6-6.5). TSH the same. My gp increased my T4 and I increased my T3 myself. Am already feeling better but still ocassional get a racing pulse in early 90's. I don't know what is normal anymore? He can't be right? Surely? I have read how low T3 levels are common in people with heart disease so surely FT3 and FT4 levels are more telling than TSH?

18 Replies

  • I doubt if they know much about T3 at all, or much about how to treat a dysfunctioning thyroid gland. They have only been told to take notice of the TSH and if it's in normal range the patient is fine. Any other complaints are nothing to do with the gland.

  • Queridalady, I've heard some rubbish spouted by endonobs but to say suppressed TSH, high FT4 and low FT3 is not a conversion issue and means your body doesn't need T3 takes the biscuit.

    TSH is a pituitary hormone which rises when low thyroid hormone is detected. Good levels of T4 are required to convert to T3. T3 is the active hormone without which we experience hypothyroid symptoms. Thyroidless patients and those with impaired DIO2 gene don't always convert T4 to T3 efficiently and need oral T3 to compensate.

    It is common for heart rate and pulse to become raised an hour or so after taking T3 as it peaks in the blood and they should drop back to normal within an hour or two.

    Low T3 syndrome is experienced in seriously ill people probably as a body defense mechanism to prevent them overdoing things as they recover from surgery &/or illness.

  • Thanks Clutter and Shaws. Shouldn't it be just simple?..... If T3 and T4 are low like mine are then I am underactive plain and simple no matter what TSH says?? :)

  • T4, T3, and TSH all work together. Someone on T4 with no TSH should be expected to have low T3--that's part of the problem with taking only T4! It's illustrated graphically here:

    It is beyond sad that an endo, of all people, doesn't know this! If your pulse is in the 90s, I'd be concerned about your T3 dose. I believe we all need SOME T3, but sometimes, it's just 5 mcg or 1/2 grain. Granted some may need 25 mcg or more T3, but realize we're all individual and need different doses.

  • Hi HIFL. Usually my pulse is in the 70's. I have a chest infection at the moment so maybe that is the reason my pulse is a bit higher? I find this all very confusing. When I first started taking T3 I had been on 100mcu T4 and I felt great. Brain fog went etc. still feel better in that respect. but my T4 was reduced to 50 mcu and after 8 weeks I decided to have a blood test as I became unable to cope with my tennis lessons due to being out of breath so quickly. The results were as above, hardly any t3 and T4. When I read other people symptoms I appreciate that I don't do so badly. I don't have swings between high and low and I don't have any antibodies. But constipation and weight gain was really getting me down and then finding that I couldn't exercise as I always have was just (for me) the last straw. thanks for the advice re T3. I have added another half a tiromel tablet (in 2 doses) to my prescribed dose to see what happens. Have been taking that since New Year's Day. Will just have to monitor and see how I go I guess. :)

  • If you felt great on close to 100 mcg T4, then use that as a ballpark. When you add T3, you don't need to subtract from T4, unless you were grossly overmedicated on T4. Some people are! But a normal thyroid gland secretes both T4 and T3. I think 100 T4/10 T3 is about AVERAGE. This doesn't mean it'll be exactly your dose, but it's a good guideline to know. If you knew that, then you would know that cutting your T4 to 50 was not a good idea. How much T3 you need is individual, so raise slowly, and hold for 6 weeks before retesting. Overmedication is just as bad as undermedication. Ask any Graves' patient!

  • Thanks :) I don't have any overactive symptoms. I still need 2 laxatives per day! I will monitor carefully :)

  • What supplements are you taking ? Lots of VitC usually solves constipation. You could keep increasing the dose until you have results !

  • I've struggled with constipation since my daughter was born some 15 years ago but never as bad as in the last 18 months of being hypo. I have tried everything under the sun. Never heard of Vit c helping :) at the moment I am taking 1000mg a couple of times a day to help with chest infection but usually have 500mg a day plus probiotics Vit d and b complex x

  • Magnesium citrate also works quite nicely, and we're often very deficient in magnesium - not so much in the soil as there used to be.

  • As you have the increased pulse rate I was wondering about your Iron - Ferritin - Folate - B12 - VitD levels. I note you are taking VitD - how much I wonder ? Also the B Complex will not give you enough B12. You could be low on the above which may cause your heart to beat a little faster. Could be worth having them all tested. You need the levels to be good for the uptake of thyroid hormones....

  • Hi Marz and jazz. I have had the Blue Horizon thyroid test done. Bloods taken this Monday 5th but they say I have to wait until end of Jan for the results??? Seems a bit long to me. Anyway I'm looking forward to getting the results. I am taking the high dose sprays of Vit D and B12 and a bcomplex but haven't bee making them long and stopped the week or so before I had my bloods taken. When I first had a blood test re thyroid the GP told me my B12 was low and that she would test again in a couple of weeks. I hardly ever ate meat. So for the next two weeks I ate marmite every day and beef a couple of times a week. The next test she said it was ok. I don't have those results though. Xx

  • It doesn't matter how much B12 you eat if you have an absorption problem. Dairy is a good source and better absorbed by the body than meat. B12 needs good levels of stomach acid so that intrinsic factor can be secreted to bind to the B12 molecules in the stomach for a safe onwards journey. It's good that you are using sprays as that will bypass that problem.

    When taking B12 you will need good levels of Folic Acid as they work together in the body. FA binds to the B12 molecules - holding onto the B12 a little longer in the body before being excreted.

    Did you know that over 80% of B12 produced in Europe goes to animals to keep them well. Now that should tell you something. :-) :-)

  • Thanks Marz. Interesting info. Dairy is always an issue as I want to lose weight. Feeling frustrated today. I have been feeling a few aches and pains in my forearms over the last few days. Before I was diagnosed I had a few months where I was finding it harder to control my weight than usual and I started pain in my wrist and arm/elbow. Was thought to be CTS. Couldn't play tennis for a few weeks but during those few weeks I recall starting to lose a few pounds despite eating some naughty stuff, then I had the lump in my throat was tested and TSH was supressed and T4 was over range. They left it another month to be tested again. Worst month ever :) as I cried continuously and had no idea why! Tests after a month had TSH at 37 and T4 less than 5. Started Levo and after about 3 weeks I started playing tennis again. Anyway after all this waffle my point is that I don't know wether my arm pain was caused by bring under or over as I went through both over a 2/3 months without knowing what was wrong at the time. So do the odd arm pain I am having mean I am on too much T3 or too little? Ahhhhhhhhhhh. Why is this such a complex condition! :-))))

  • Going to eat some cheese now having read your info on B12 :)

  • Fat doesn't make you fat - carbs and sugar do :-)

    Sorry am not sure about your arm pain. I play tennis and teach yoga - usually when my arm hurts it is because I have overdone things and then my neck suffers. Arm pain seems to radiate from there...

    Hope you soon have it sorted :-)

  • What a prat. Sorry, he's talking out of his bottom. :-o As you're taking T3 you'd expect your TSH to be suppressed ( if it wasn't, you'd be feeling worse than you do). Clearly your T4 isn't converting to T3, because if it was, your T3 result would be in range. As it is, you don't appear to be on enough T3. I think you were right to increase your Tiromel, and I think you'll probably need even more eventually - good to raise it slowly though.

  • Thanks Jazz. You made me smile. Everyone here seems to be of the same opinion that the Endo knows less than people who have been there. :) it's reassuring to know x

You may also like...