Meds

[Maggie9932]

Hi there, I am new, but I have been a thyroid patient for twenty years now after Graves’ disease, for which I was given radioactive iodine. I took levothyroxine originally but just ballooned on that and passed out, felt awful etc etc, so I saw an endocrinologist who did say that not all patients convert the levothyroxi to t3 in the body after radioactive iodine so she put me on liothyronine, the weight went but I became overactive again, so my doctor put me back on levothyroxine in 2015, once again my weight has ballooned but in the end in January I ended up in the accident and emergency department at my local hospital with a thyroid crisis attack, I had been feeling very odd since last September but stupidly did not relate it to thyroid, well one doesn’t like to dwell on it all the time. Anyway something has changed because my blood tests showed t4 at 23, and TSH less than 0.03, in the end I requested all my tests since 2012 and some are still missing but there is a clear change since I was moved from liothyronine to levothyroxine in August 2015, my TSH is less than 0.03 in all tests since then, my t4 has gone from about 7-8 gradually upto the 23 measured in January this year, and my t3 has dropped. I do not have figures for all t3 results uptodate for some reason they have not provided them or did not do them, I was on 200 micrograms a day of levothyroxine but it has been reduced to 175 micrograms about six weeks ago, but I am still not right, and have been called back,, there are some tests missing from my results which I am going to ask for tomorrow, but I think I need to take T3 as well as levothyroxine, if only because I have never been this big in my life, and I feel exhausted most of the time..does anyone have any ideas

[Maggie9932]

Hi there, yes, I think that is why my doctor switched me to levothyroxine, it’s useless though, thank you for your comment 👍

[greygoose]

I saw an endocrinologist who did say that not all patients convert the levothyroxi to t3 in the body after radioactive iodine so she put me on liothyronine, the weight went but I became overactive again, so my doctor put me back on levothyroxine in 2015

Sometimes I despair. What do these people use for brains? She made a very good start by showing her understanding of conversion problems, and then went to pieces and took you off T3. Why? For a start, you could not possibly 'become over-active' because you have no thyroid. You were over-medicated. And, when one is over-medicated, one lowers the dose. It's really not necessary to take you off it completely. That was a knee-jerk reaction of someone who was in over her head.

How much T3 were you taking? And, what were your levels when she took you off it? Did she just panic at the sight of a suppressed TSH? Or was your FT3 well over-range? If you're taking T3 a suppressed TSH really doesn't matter.

I think it would help people advise you if you were to post the actual numbers - results AND ranges. Otherwise, it's a bit of a guessing game.

[Maggie9932 in reply to greygoose]

Hi there, thank you for getting back to me, I saw a German endocrinologist at my hospital she put me on t3, she was the lady who explained about t4 not being converted into t3 well in some graves patients post radioactive iodine, I can’t remember what year that was, and there is a problem with accessing history before 2012 because the systems changed apparently, I had to take it every 2.5 hours during the day because of the short half life thing I think it was, I took half a tablet Every 2.5 hours upto five times a day. The last blood test I have on this medication is 6/3/15,

TSH less than 0.12 normal range 0.35-4.94

T4. 7.5. Normal range 9.0- 19.0

T3. 5.0. Normal range 2.6-5.7

it was my actual gp who changed me to levothyroxine in about August 2015, test results of 10/8/15 were

TSH less than 0.03 normal range 0.35-4.94

T4 9.8. Normal range 9.0-19.0

T3 5.9 normal range 2.67-5.7

I am not sure if I was changed before these tests or not though, it was probably after them

The last test results I have which include t3 are from 31/8/16

and subsequent blood tests were not done for t3 levels only t4 and TSH....so the last blood test results I have with T3 readings are 31/8/2016, these were done by another endocrinologist at my hospital but he said they were fine the results were

TSH. Less than 0.03 normal range 0.35-4.94

T4. 17.5. Normal range 9.0-19.00

T3. 3.8. Normal range 2.6-5.7

Since then according to the results which I have managed to get as many of as possible no t3 testing has been done, and the t4 readings have all been at the top end of the normal range, and my TSH has been consistently less than 0.03... normal range 0.35-4.94

I have requested new tests from another doctor who did actually see me after my trip to a and e in January at which point he did say, well I don’t know who has been reading your results, so he is being very helpful, he phoned today to discuss it, and my last tests, he is doing t3 as well also the thyroid antibody testing I can’t remember what they are, and I asked for relevant vitamin and folate tests because when I get a lot of palpitations and breathlessness I have in the past had very low folic acid levels and taking that helps , I have started taking that anyway . I have asked for everything to be done which was on a list on here...then I have an appointment with the endocrinologists , but it’s not until September so I am to phone the hospital and ask them if they can do anything earlier, failing that I could go privately...

Sorry to be so vague, but the blood tests don’t seem to be that helpful either without the t3 levels being tested

Thank you again for replying 😊

[greygoose in reply to Maggie9932]

No, blood tests without FT3 are not very helpful - especially as that endo that put you on T3 was right, and you don't convert very well. But, taking T3 every 2.5 hours is rediculous. Nobody needs that.

Can you remember what size the tablets were? 20 mcg? Sounds like you could have been over-medicated - but not according to those labs. There was absolutely no need to take you off T3, it was probably just that your GP didn't want to pay for it. A suppressed TSH alone does not mean you are over-medicated. Taking T3 is going to suppress the TSH, and it's about time doctors cottoned on to that! Let's hope that this new doctor does put you back on T3, because you really do need it.

[Maggie9932 in reply to greygoose]

Hi again , Thankyou again 😊👍

I was taking pills of liothyronine which were 20mcg, 10mcg every 2.5 hours upto five times a day, sadly I never saw the German endocrinologist again after that.

This new dr is happy to do that but he needs an endocrinologist to prescribe it initially, he does seem to understand how it works all round though, so fingers crossed

If I take t3 in liothyronine with the levothyroxine I think that might work better, but I haven’t got a clue how much of each to take, and until I get some t3 results there is no indication of my current t3 level.

The blood test done by the hospital on the 12/1/19 appears to have gone missing 😕 but I had one booked for 15/1/19 because on the 11th I had an emergency appointment with a dr because I was so unwell, the results for that were

TSH less than 0.03 normal range 0.35-4.94

T4 20.0 normal range 9.00-19.00

No T3 tested

Many thanks again 😊

[greygoose in reply to Maggie9932]

Yes, well, according to that last test, a doctor would say you're over-medicated. But, given that you don't convert well, you're actually under-medicated. But, that's too complicated for most doctors to get their heads round. Possibly why they don't even test for FT3. But, it's low T3 that causes symptoms. Not T4 and not TSH.

You were taking far too much T3 before, if that's the dose he started you on. The rule for taking hormones - all hormones - is start low and increase slowly. You don't have to know how much T3 you are eventually going to need. You just need to reduce your levo by 25 mcg and add in 1/4 tablet of T3. Keeping to the same amount of levo, you can increase your T3 by 1/4 tablet every two weeks until you get to one whole tablet. Then, hold that dose for six weeks, and retest. Not that complicated.

[Maggie9932 in reply to greygoose]

Oh that’s brilliant 👏🏻👏🏻 Thank you, I will record that in my new tackling horrid health file 😊👍 thank you so much , that is easy to understand

[greygoose in reply to Maggie9932]

You're welcome.