Reverse T3.

[JanieJ]

Hi all,

I have been hypo for over 45 years and was on 250mg levo happily for many years until I reached the menopause during and after which my dosage has been reduced to 100mg. I have just had my bloods done but am still waiting for the liver function, full blood count and serum which will hopefully be back today. TSH, folate, ferritin, vit D and ST4 are all normal but I still have to collect the printout for full readings again hopefully later today, together with the other results.

Since the dose has been lowered I have never felt right with many differing symptoms. I am most concerned about my liver count as an enzyme has been raised in the past and apparently I have a fatty liver, although I feel I maintain a healthy lifestyle and rarely drink. I also bruise quite easily and am tired a lot of the time. My feeling is that something isn't quite right with my dose and therefore my body is not functioning properly. If the rest of the results come back ok, I intend to have a private blood test for T3 and T4, which despite my GP requesting the labs will not do as my TSH is ok.

My question is should I also have reverse T3 done? What is this for and would it be appropriate in my case? Also, should I have any other tests done?

Many thanks in advance for your help

[SeasideSusie Remembering]

Your story sounds a bit similar to mine, I've been hypo and treated for over 40 years (although never on that much levo) and things started going wrong around menopause.

I had my levo reduced due to TSH only, went through two years of private doctors and various combinations of NDT and T3, but nothing helped so went back on Levo.

Now, many years later and after extensive private testing I know my problems stem from something my GP would not have considered or agreed to do. I now know my adrenals are out of whack and my sex hormones practically non existent. Thyroid, adrenals and sex hormones all work together and need to be balanced. I am working on mine with help from a holistic hormone specialist and things are beginning to improve gradually. I would suggest that you consider doing the Genova 24 hour saliva adrenal stress, also one of the hormone tests for menopause or post menopausal females.

I know you say your TSH, folate, ferritin, vit D and ST4 are all normal (actually, what's ST4?) but the reference ranges are needed to really know your levels and to see whether they are optimal so hopefully you'll get those later.

[JanieJ in reply to SeasideSusie]

Hi SeasideSusie, many thanks for oyur reply, what a lovely name and conjures up lovely images of being by the sea!

Did you manage to get your GP to test your sex hormones? I have also wondered adrenals but find it all a bit of a minefield to know which way to go.

I have also heard that after use of levo for many years in can become ineffective and that although it is showing in my blood my body may not be absorbing it?

I have a huge amount on my plate and its only when I am feeling particularly low that I make time to do some research otherwise I just don't have the time. Like all of us I just want to feel well again.

[SeasideSusie Remembering in reply to JanieJ]

JanieJ I've given up with my GP, there are four at my surgery and they're all worse than useless, chocolate fireguard springs to mind! I am dodging any request for thyroid tests through the surgery because they only go by my suppressed TSH, nothing else matters and all they do is scream over medicated and they're not open to discussion.

I went to an NHS endo back in 2002/3 and mentioned to him about Levo might not be working properly after so many years, he virtually screamed at me that I was talking rubbish and that it doesn't stop working. He was an utter pig and I refused to see him again after the third visit, I cried after each appointment because of the way he spoke to me even though my late hubby was there for moral support and to help me explain how I was. All he wanted was to lower and lower my levo until my TSH was in range despite my FT4 and FT3 being rock bottom and my symptoms being still very hypothyroid.

Then last year I had a comprehensive test done with Blue Horizon, followed later by their Thyroid Plus 10, Vit D was done by City Assays, and through Genova I've had a candida test, iodine test, adrenal stress test, menopause plus test (for sex hormones plus others) and urine thyroid test. These have ruled out certain things and revealed certain things so I am consulting with the hormone specialist privately to address my issues, tweaking my thyroid meds where necessary and just not bothering with my GP.

The menopause test was done with saliva and urine but I don't know how it compares with any tests the NHS do for sex hormones.

If you think your not absorbing Levo properly then you need to get all your vits and mins optimal for them to have any chance of working. If you post any results members will help and suggestions supplements where necessary, also if your meds need tweaking.

[JanieJ in reply to SeasideSusie]

Hi again, I will wait until I hopefully get the print out tomorrow with the readings and see what they say and order a test from Blue Horizon for the other tests so that I can get a better picture. Am thinking of waiting until I get the results of these and depending on what they find then go for the others. What is the difference of having a urine thyroid test as apposed to a blood test and what does the iodine test show? I guess I need to buy the book that has been recommended for bedtime reading...if I haven't already crashed out before I get to read it!!

By the way, sorry for your loss, been there too.

[SeasideSusie Remembering in reply to JanieJ]

JanieJ The blood test just gives a snapshot of what is happening at one particular moment in time in the blood but doesn't necessarily reflect what is going on at cellular level. The urine test is where urine is collected over 24 hours, all mixed together and one tube full drawn off and sent off as a sample to be tested. This is supposed to give a picture of what is happening at cellular level over 24 hours.

I have not been able to find a definitive answer about whether the urine test tells you what is being used by your body, or what is being excreted after your body has used what it needs. Some people think it's not a reliable test, some people think it's useful.

I used it to see how it compares to my blood test. In my case, the blood test showed FT4 very high (well over range) and the FT3 only half way - FT4 165% of range, FT3 55% - so pointed to poor conversion considering that FT3 should be higher in it's range than FT4 is in it's range. The urine test showed FT4 as 40% through the range and FT3 as -6.4% (that is minus, I was below range). Again it showed my conversion was poor. The tests weren't done at the same time but they were done whilst I was on the same medication. Even though I don't know the exact science behind it, it does bear out what the blood test was showing.

I tweaked my meds (lowered Levo a bit and added a small amount of T3) and did the urine test again. It then showed FT4 29% through the range and FT3 43% through the range. That confirmed that adding T3 and lowering Levo had made the difference I was expecting. So as far as I'm concerned the test has been useful in my case. I have yet to do another blood test to see what that looks like.

I don't particularly think the urine test should be used on it's own (for diagnosis) but I think it's useful to use alongside the blood test and useful for monitoring when tweaking meds if self treating and self testing.

The standard urine iodine test shows your iodine status at the time the test is performed. There is also an iodine loading test, where you ingest an amount of iodine and urine is collected over 24 hours - the amount of iodine excreted is supposed to show whether you are deficient but there is some doubt as to the reliability of this test as it appears that almost everyone who does it is deemed deficient. I did the standard test and was happy with that.

[greygoose]

There's no such thing as 'normal', when talking about thyroid. What doctors mean is 'in range'. But, 'in range' isn't the same as 'optimal', and 'optimal' is what you want to feel well. But doctors don't know that.

Has he only done the TSH? In that case, he has absolutely no idea if you're 'normal' or not! TSH is a pituitary hormone, and a very unreliable test. You should never allow your doctor to reduce your dose according to the TSH alone. What you need are the FT4 and FT3 - and a new doctor, I think!

Yes, you should get them done privately. What you need at the moment are :

TSH

FT4

FT3

TPOab

TgAB

vit D

vit B12

folate

ferritin.

rT3 is very difficult to interpret, and I really don't think it's worth spending money on it at this point. The FT4 and FT3 will tell you if you're converting. And if not, the vit D, etc might tell us why. The TPOab and TgAB will tell us if you have Hashi's - there are things you can do about that that doctors know nothing about!

So, what is your TSH, anyway? And, by ST4 - a typo? - do you mean FT4? If so, what is the result? Also, when posting lab results, always put the ranges, because without them, the numbers mean very little.

[JanieJ]

Thank you Greygoose.

I have had B12, Folate, Ferritin, TSH. Vit D, ST4, Full Blood count, Liver Function and Syrum? The GP did I suffer from anemia otherwise why did I need all these tests done!

They were waiting for the Full Blood Count, Liver Function and Syrum. They have requested T3 and T4 at least twice and the labs have not done them even though they were specifically requested. The Plebo nurse also a sufferer said they will not do them due to costs and that she was having to have bloods done privately herself, however she did tell me that they would draw the bloods there, which will be very useful.

The receptionist gave me the results over the phone and I did question the ST4 and she said it was one of the Thyroid tests, so maybe a typo.

I will go into the surgery tomorrow to hopefully get the other results and a print out when I will know more and will then post the results on here.

I have not heard of TPOab and TgAB before are these the Thyroid antibodies? I am looking at the Blue Horizon web page to determine which tests I need and apart from the usual TSH, freeT3 freeT4 and T4, I can only see antibodies and CRP.

Many thanks.