Well this is turning out interesting!! I’ve been totally off of Levo for 10 weeks as per endo instructions...
TSH: 23.8
T4: 11.4
T3: 3.3
Low levels of antibodies meaning I could be prone to hashi’s/graves but don’t have either one yet so apparently no point in testing for the vitamins or metals.
Considering that I was up to 100mcg in June as my TSH was still soooooo high (36.5 on 75mcg) I am not really sure what to make of this at all!
I’ve had more bloods taken today and they are being tested at two different sites to see if there is “interference” in my TSH which is why it reads high.
Any ideas other than “interference”?
Confused in Berkshire!!!
Thanks all! X
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Hypo73
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That's rather a confusing post! Why did you come off your levo if your TSH is so high? Can't comment on the Frees because you haven't given the ranges. But, your FT3 could be very low. So, what sort of results were you and your endo expecting from being off levo for 10 weeks?
Low levels of antibodies meaning I could be prone to hashi’s/graves but don’t have either one yet so apparently no point in testing for the vitamins or metals.
That makes no sense at all, I'm afraid. Low levels of antibodies are more likely to mean you aren't prone to Hashi's or Grave's. But, which antibodies are we talking about, because Hashi's and Grave's have different antibodies. And, as far as Hashi's is concerned, you can't prove a negative - some people have Hashi's without ever having over-range antibodies.
And, whether or not you have antibodies you still need to get your nutrients tested. You are hypo (so no idea where the Grave's comes in, that's hyper), so you probably have low levels of stomach acid, which means you will have difficulty digesting and absorbing nutrients, yet they all need to be optimal for your body to be able to use thyroid hormone efficiently. So, they need testing.
I would imagine that your TSH is high because your Frees are low - which is what one would expect if you take a hypo off her thyroid hormone replacement for 10 weeks. And even when you were taking it, it was only a small dose. Are you sure it's an endo you're seeing, and not a... I don't know, a canteen manager?
The reason I came off completely was to get an idea of what my baseline results actually are and as far as baseline results go they’re not as bad as they could be.
On 100mcg I was having chest pains, palps and swelling of lower legs. I had an echo and the cardiologist said I was healthier than him and to be I back to my doctors. After a further blood test (when I was on 50mcg) my doctor called and said I needed to increase my dose. I flat out refused and they referred me to the endo. I went private so I didn’t have to wait for nhs, I’m lucky!
Private endo said how do you feel, I said better than when I was on 100mcg and after going through all my tests she is the first to actually test my T3.
The results that came back (I don’t feel unwell, haven’t gained weight and have no “thyroid” side effects) lead her to say she needed to get me back on Levo ASAP, BUT she wanted to run one more blood test to check for interference as with my results I should be feeling like a sack of sh1t.
I get my new results tomorrow hopefully and then we will know more.
I was wondering what could interfere with a TSH reading really. She did mention that if I have a natural “interference” in my body that it may be that we need to ignore the TSH reading completely and just go on T4 and T3 as the end result.
I don’t want to be on a drug that makes me feel so wretched but at the same time I don’t want to put my life in danger by not taking it. The question is, what in my body could possibly skew the results quite so much? I don’t take any other meds or supplements and follow an average diet with my 5-a-day, proteins and carbs in moderation.
The reason I came off completely was to get an idea of what my baseline results actually are
You had your baseline when you were diagnosed. Why would you put your health at risk to get another one?
On 100mcg I was having chest pains, palps and swelling of lower legs.
Hypo symptoms, I imagine you were under-medicated.
I flat out refused
Why?
she wanted to run one more blood test to check for interference as with my results
What test is that?
I was wondering what could interfere with a TSH reading
Several things can interfere with a TSH reading. For a start, the time of day the blood draw is done. But, we still don't know the ranges for your Frees, so it's very difficult to say if they correspond to the TSH.
She did mention that if I have a natural “interference” in my body that it may be that we need to ignore the TSH reading completely and just go on T4 and T3 as the end result.
My opinion is that they should always ignore the TSH, it's not a reliable indication of thyroid status. But, I don't know what that 'natural interference' could be. What were your results when you were diagnosed?
I don’t want to be on a drug that makes me feel so wretched
Levo isn't a drug, it's a thyroid hormone, T4. But, it needs to be converted into T3 to make you well. But, we can't know how well you convert at the moment, for several reasons. You'd have to go back onto levo and get your TSH down to 1, then test your FT4 and FT3 at the same time to find out.
what in my body could possibly skew the results quite so much?
I have no idea. I've never heard of that before. But, what makes you think the results are skewed? You don't have enough information to know that.
You do know that 5-a-day is not a real thing, don't you?
I agree with Grey goose. Your tsh is high and it is very likely that your frees are low.... Very low. You need to get the ranges but both would be under the ranges my lab uses. I was very ill and hypo with ft4 of 10 and Ft3 of 3.
That’s what my endo was expecting, for me to drag my ass into her room and beg for the Levo but to be honest I feel better off of it. I am as confused as she is!
Absolutely essential to test vitamin D, folate, ferritin and B12
Would expect they are extremely low after now Levothyroxine for such a long time. (Barbaric and dangerous idea in my opinion)
Starting back on 50mcg Levothyroxine and increasing up slowly
Retesting bloods 6-8 weeks after each dose increase
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
I was being tested 8 weeks after each increase and ended up very ill on 100mcg, I asked if she would test the vitamins and folate but she told me that I don’t have an autoimmune issue other than my thyroid and that it was pointless to test them.
I don’t have an autoimmune issue other than my thyroid
So, does that mean that you do have an autoimmune issue with your thyroid? In other words, you have Hashi's? Well, that would explain everything!
But, she's totally wrong about testing nutrients. When you're hypo, you're more than likely to have low stomach acid, meaning that you have difficulty digesting and absorbing nutrients. And, they all need to be optimal for your body to be able to use thyroid hormone correctly. So, they need testing.
Nothing to add to the above posts, but presumably you’re saying it’s interesting because you’ve come off levothyroxine and your TSH has gone down - which is strange.
I can’t think why they’d take you off when your TSH is high.... I’ve just read your other post and it makes more sense - heart issues. I hope it all gets sorted for you soon.
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Why did you come off your levo if your TSH is so high? Can't comment on the Frees because you haven't given the ranges. But, your FT3 could be very low. So, what sort of results were you and your endo expecting from being off levo for 10 weeks?
Assay’s interference 
First Endo appointment was not what I expected!!!
Hmmmm..... results in - should I be pleased or not ??
Not Quite Right...........Help Please.
Medichecks results - what now?
