Do you take T4 or T3 if so when where your doses added how much. Plus how are you feeling at the moment and have their been any times that you feel good.
Hi i only take levothyroxine, i've been diagnosed m.e too but i don't think it is, i was diagnosed m.e 6 months after the hashimotos and spent six years feeling really ill to the point i haven't been able to get out of bed sometimes weeks on end. I felt really good when i first started on the thyroxine, don't get me wrong i have good days but i still can't walk anywhere i just don't have the energy i'm also completely fatigued xxxxx
So when you got the test results he put you on how much Levothyroixine? Has this changed at all or are you on the same dose?
<b>Updated on Jan 26 2011 7:24PM:</b> And have you ever had a T3 test done?
Hi nope no T3 tests as far as i can see, i've been on 125 levothyroxine nearly 2 years now but they say i can drop it to 100 if i feel i need too or just stay on the 125 there is only one time i went on to 100, before the two years i was on either 75 to 100 dependant on how i felt xxxx
when I look at your results I see that your T4 is quite high in the reference range so it makes me wonder if you are converting it to T3. First thing they should do is a T3 test to see if you are using what is in your body effectively. My T4 has always been around 12 and never seems to get much higher which makes me think my body cannot use the synthetic T4 so it thinks I don't need it (my opinion only). I have read somewhere, that having lots of T4 that cannot be converted can cause joint pain.
oh i have awful joint pain poppy :/ so thats possibly what that is, thankyou xxxxxxx
did you have joint pain when you were first diagnosed? I only went to my GP because my finger joints were bigger after pregnancy but I didn't have any pain at all. Mine only started once I started the T4.
poppy i had everything pain, i went because my husband had been on life support and not expected to live so i went thro 6 weeks of hell, when he did survive and we got him home, i went from running around to laying on the sofa and not being able to move i was in total agony and i was so exhausted, the docs still said there was nothing wrong with me so i copied blood results at that point to here and it was because of thyroid uk i was treated, don't get me wrong its eased from the early days but i'm still really not well and i just know its thyroid related and not m.e like they are saying, i just don't think they are paying the right attention to my tests xxx
That's a terrible position to be in. Is he ok now? You must have been so stressed with it all and not surprising that you then physically collapsed.
Have they tested you for the thyroid antibodies too? Your TSH never seems to come down permanently and you still seem too all over the place to be properly medicated (to me). I feel that definately you need your T3 tested as I cannot see they would increase your T4 as you are right at the top end of the range.
I am now taking selenium which is supposed to help with conversion of the T4 to T3 along with Vit C and iron. My private endo has suggested a Vit D test too as this too could be causing my joint to ache.
he's still very ill and disabled so you can imagine how its been for us especially with me ill too with "m.e" strange i've been told vit d is good for joint ache. i'm seeing an endo on march 9th, i will ask for my t3 to be tested too, i need to get well now as my husband gets worse by the month and i have kids so even half my life back from what i have now would be lovely xxxxxxxxxxxxxxxx
I do hope the visit to the endo is a good one and they manage to sort you out, I do sympathise as i have crippling joint pain that actually started before i was diagnosed but i do convert to T3 but it does not appear to be going into the cells. best wishes angie xxxxxxxxxxx
if i could just get rid of this exhaustion i could cope with everything else, i'm 39 and don't want to be in bed 6pm every night and thats with a sleep in the day, i want somewhat of a normal life. I don't want to be labelled m.e if its something that can be treated, you wouldn't believe the meds i take right now. The palpatations are a nightmare too. But i have a bloodtest next wednesday and i had never been told not to take the thyroxine before bloods so i've always had it done with thyroxine in the system, so wednesday i will not take the thyroxine til after the bloods this may be a big help in itself, xxxxxxx
Let's hope things start to get looked at as a whole. The Vit D test was to see if I am low in it as being low can cause a problem with joints apparently. I guess rickets is the prime example of low Vit D. I have vitiligo too so it wouldn't surprise me if it is a bit on the low side as I don't have much pigment to convert to Vit D.
I am sorry your husband is getting worse. It must be such a worry for you, which really isn't going to help you at all. I find stress to make my condition even worse.
Did you ask what the free t4 lab range is as they vary, then you can see if your freet4 is at the top of the range.
Some of u's need t3 adding and some of u's only get better when we add armour or replace thyroxine with armour
What state are your adrenals? Have you had a saliva test ? Sorting the adrenals made a much bigger difference to fatigue than T4 or t3 ever did.....
It's around £70 for atest but money well spent imo.
Nel
hi suze the lab range is 11.0-26.0 ,i'm wondering if i've simply not got T3 going on xxx
Hi Nelly i'm at the endocronologist in march to have my adrenals checked as i begged them to see me because i wondered that too , i simply cannot afford to pay for anything as we are on benefits due to disability, so i'm hoping they sort me out.
March is a long way off, you really need to have your free t3 tested
If your free t3 level is ok then it looks like t4 only medication is not for you.
HI SUZE
DO I ASK MY GP TO TEST FOR THAT? AND EXCUSE ME FOR SOUNDING THICK BUT DO YOU MEAN I COULD NEED ANOTHER MEDICATION ON TOP? SORRY SERIOUS BRAIN FOG DAY XXXX
What I do is get a blood form from the doc where she fills it in for thyroid then I write in the comments box free t3 and free t4 is needed for dr ....... And write the name of my endo.
It could be that you would benefit from adding other throud meds or changing, it has taken me nearly 5 years to find what I need
Just a thought could that be because you have a reverse T3 problem.. I saw a link on the thyroid UK web site about a guy who's cell's didn't take the t3 even though the body was converting it and that was due to reverse T3 (somthing about the iodine receptors taking it the wrong way round) might be worth a google. Perks
I'm new here. I usually play in the US forums. I've just posted a new blog entitled 'T3 and Hashimoto's thyroiditis'. You sound a bit like me.
You do indeed need your free T3 and free T4 measured as well as TSH. However, my experience was that my blood test results looked OK when I was on the 'right level of T4'. Read the blog. I had 7 years on T4, tried natural thyroid, tried synthetic T4 + T3 - same results. Then switched to T3 - Lights On!
That was my experience and may not be applicable to you. Sometimes people do get to a point when trying having trials of alternative thyroid medications make sense as a diagnostic test if nothing else is working.
Then the trick is finding a doctor willing to do it.
Remember I take NO T4 at all. I have virtually no thyroid function left at all and so I have almost no T4 in my system.
I only take around 55 micrograms of T3 spread in 3 or 4 doses per day. This is really the very low end of full replacement T3 doses. From the many patients I have spoken to who are ONLY on T3 this is the low end of replacement.
A lot of docs in the UK quote a replacement dose of T3 of 40-60 micrograms. I don't know where they get that data from. It is just about conceivable that in the cases of total thyroidectomy people may have been given T3 and for those cases doctors may have discovered that only 40-60 mcgs are required to regulate TSH or FT3.
However, I and many other people know that you can't treat people based on TSH (a pituitary view of what is normal) or on Free T3 or Free T4 because these are just blood levels of hormones. It is what is happening in the cells of the body that counts and that, at present, can only be measured by symptoms and signs.
So, for those people that can't be made to feel well on T4 then there is a good chance that other forces are at work that hampers thyroid hormone in the cells. Therefore it is no surprise to find out that typical real-life replacement dosages of T3 are 75-200 micrograms and sometimes more.
My requirement is low by any other T3-only patient I have spoken with.
The trick with T3 is to use it in multiple divided doses (3-6 typically) and to increase them very slowly by only around 2.5 micrograms (1/8 of a 20 microgram tablet).
Hope that helps.
Paul
heya everyone blood tests tomorrow at 11:10 i must remember NOT to take my thyroxine in the morning !!! hoping this might help towards the answers i need, this way hopefully we'll get a true reading of whats going on .......... fingers crossed. Hope you are doing ok !!
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