High TSH on T3 & NDT: Hello everyone. Right... - Thyroid UK

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High TSH on T3 & NDT

DonnyJam
DonnyJam

Hello everyone.

Right before I start on this one I'm a fairly long time member of the board but I'm not around much because since being on NDT and supplementing T3 I'm getting on very well and tend to be able to gauge whether I'm over or under medication by how I feel, or so I thought. (currently taking 1 grain NDT & 25mcg T3)

I think I asked about this a while ago because of my new GP is way more hands on than my last and she's not happy with my levels even though she was until now happy for me to self medicate but yesterday I went for a routine TSH/T4 test and she and the lab were so alarmed they were back in touch with me by tea time about my abnormal results, I can't remember exactly what she said my levels were but TSH was in the 20's and T4 was low in range.

How can this be possible if I feel spot on? If my T3 is high in range do I need to be concerned about high TSH and low T4? I thought not as TSH is useless once on T3 and T4 only serves to be converted to T3 anyway?

She basically said she wants me back on levo, I adamantly refused stating I do not feel well on it and I feel fine as I am, I suggested maybe she should check my FT3 before we make any changes so she agreed and I'm going for another test tomorrow.

I will come back with my results with lab ranges when I get them, then hopefully you guys can help me make sense of whats going on.

I used to take supplements with biotin in them before but I stopped in case they were interfering with my results..

I guess what I'm wondering is, should I try to stick to what makes me feel well or should I be more concerned about this really high TSH and low T4 even if my FT3 is around the top of the range?

Maybe I need to take a little less T3 and a little more NDT to lower TSH and lift T4 but still hopefully keep my FT3 high?

I know this is just guess work for the moment till I get this next test done but I'm just trying to be ready for what she might come at me with if she gets in touch with me before I get chance to check my results on here?

11 Replies
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shaws
shawsAdministrator

The first thing is to get a copy of your results with the ranges?

I'd recommend that you do. Mistakes can be made I'm sure. Did you leave a gap of 24 hours between your last dose and test?

They cannot tell anything through blood tests as you are taking NDT and T3.

Blood tests are for levothyroxine alone i.e. T4 only.

It should be how 'the patient feels' on their dose of NDT or NDT/T3 or T3 only and relief of symptoms.

TSH is from the pituitary gland and not the thyroid gland. It is how the patient feels on a particular dose.

NDT contains, T4, T3, T2, T1 and calcitonin.

One of our deceased Advisers, only took one blood test -and that was for the initial diagnosis. Thereafter it was increases in dose every two weeks and concentrating on relief of symptoms.

DonnyJam
DonnyJam
in reply to shaws

Hey shaws, No I didn't have a gap, I actually took half a grain of ndt and 12.5mcg of T3 on waking. When taking levo I used to leave the gap but on NDT/T3 I tend to wake feeling like I need it...

Blood tests are for levothyroxine alone i.e. T4 only.

It should be how 'the patient feels' on their dose of NDT or NDT/T3 or T3 only and relief of symptoms.

This was my feelings on in since being on NDT/T3

One of our deceased Advisers, only took one blood test -and that was for the initial diagnosis. Thereafter it was increases in dose every two weeks and concentrating on relief of symptoms.

Sorry to hear we lost a board member, I do actually seem to remember once having a member reply to me once telling me that they controlled their dosing in this way and it's always been in the back of my mind, especially since I decided to go it alone on ndt....

Tell the lab to run t3 on yesterday’s sample!! It would have been spun and fridged. Wards ask for add on’s all the time. Tell your gp to phone.

"I thought not as TSH is useless once on T3 and T4 only serves to be converted to T3 anyway?

If a TSH is in the 20's it is definitely something to be investigated. A TSH test is never useless, it tells you what your TSH is; what shouldn't happen is that it is used in isolation to make any diagnostic or dosing decisions. But a TSH in the 20s is an important piece of information even if it is indicating an assay error! Regarding T4, yes it "should" convert efficiently into T3, but sometimes it doesn't, so again it is important to know the levels of both FT3 and FT4 to give an insight into what might be going on. I'd suggest not to make any dose adjustments until you have the repeat tests, which should include both TSH and FT4, and not simply FT3 in isolation.

DonnyJam
DonnyJam
in reply to MaisieGray

I understand that my high TSH could be a marker that something is not right but I just felt that if my T3 is high in the range through medicating with NDT/T3 then TSH/FT4 is pretty irrelevant especially if I'm also feeling well?

Forgive me if I've forgotten along the way but as far as I remembered the TSH loop is broken when you take T3? and T4 is only a container for T3 conversion (kind of) so if my T3 is where it should be (hopefully high in the range) it's not unusual to see lower T4? but I would expect to see low TSH still, This is where I'm confused

MaisieGray
MaisieGray
in reply to DonnyJam

When I was diagnosed 40 yrs ago, I was feeling perfectly fit and well, but my blood tests results led my Endo to say that I was actually so ill, that I had one foot in the grave! (We didn't ask what the results were, in those days!) You are correct in that introducing T3, whether synthetic or in an NDT, will generally alter the profile of the test results, T4 being lower or even low, in range; and TSH low or suppressed. Which make a TSH in the 20s even more unusual. However, FT4 isn't irrelevant, as some people find that having that low FT4 does actually have a negative effect on their wellbeing, although others may be fine with it. It also appears from more recent research, that T4 may in fact, have a direct purpose other than simply being an inactive storage pro-hormone. I think it's in the brain but possibly not, as memory fails me for the moment.

HughH
HughH
in reply to DonnyJam

With Free T3 high in range the TSH would normally be very low. To have a high TSH could indicate that your body wants your Free T3 to be even higher. This can happen with thyroid hormone resistance.

You are not likely to get much help from your doctor if this is the case.

DonnyJam
DonnyJam
in reply to HughH

Thyroid resistance is pretty rare, something like 1 in 40,000 if I remember rightly? So hopefully not. Maybe I'm just interpreting symptoms wrong and now not noticed hypo symptoms, just may need to up my net a little. Should have my results today so I'll be back with them later with a bit of luck

HughH
HughH
in reply to DonnyJam

The stated incidence of thyroid resistance is based on the small number of genetic defects which have been identified. It does not take account of the genetic causes still to be identified. It is highly likely that the condition is common but rarely diagnosed or treated.

In order to identify a new specific genetic defect it is necessary to find a group of people who are likely to have that same genetic defect. Gene sequencing technology is then used to examine the DNA of the individuals within the group. It is difficult to identify such groups using just the symptoms of thyroid resistance. In some cases there are very obvious signs, such as specific severe physical and learning disabilities and much of the research so far has made use of these disabilities to identify cases for investigation. It therefore follows that the syndromes identified are almost all syndromes associated with severe learning or physical disability.

In any case, thanks for the replies so far and I will be back with the results and before if I get any more replies

Right I've just spoken to my GP over the phone so I have the results from my last test but because they were given over the phone I haven't got the lab ranges.

I'll have to call the receptionist to ask for a copy with lab ranges if needed.

My GP is pleading with me to go back on levo because I'm currently showing as hypo, I said sorry but I will never take levo again but I'm willing to up my ndt or T3

TSH 23.5

T4 6.4

T3 3.9

If this is no good and lab ranges are needed I will try and get them

I find it strange that I'm clinically hypo but I feel fine, I can lose weight, I have plenty of energy, I sleep fine, I'm only tired when I don't get any sleep like a normal person??

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