Can anyone help with test results?

[Jojozo]

Afternoon everyone, I got my results from my last three tests this morning. To cut a long story short my thyroxine has been cut twice in the past few months and I'm feeling worse than I have done in years, but confusingly my doctor seems thrilled that my results are not back in the 'normal' range, which makes me wonder if it's all in my head?! I have Hashimoto's too. Thanks for any help/advice you can give! Jo

23rd June (I was on 175mg)

serum free thyroxine 25.1

serum free triiodothyronine 7.3

serum TSH 0.01

Dose then lowered by 25mg to 150mg two days later

5th August

serum free thyroxine 31.3

serum free triiodothyronine 6.7

serum TSH 0.01

Dose lowered by another 25mg to 125mg two days later

9th September

serum free thyroxine 20.0

serum free triiodothyronine 4.5

serum TSH 0.05

[greygoose]

Hi jojozo, do you have the ranges for those results? Because otherwise it's impossible to make anything of them. Except that your TSH is suppressed - which is doubtless why they reduced your dose - but we know that the TSH means nothing on its own, it's the other results that count.

[Jojozo in reply to greygoose]

Hi there, I've attached the printout the doctor gave me. Does that help at all?!

[greygoose in reply to Jojozo]

So, no, it's not all in your head!

The first two tests, your FT4 was over range, suggesting that you were taking too much T4. But your FT3 was only over-range in the first test. Now, it's only just mid-range, whilst your FT4 is up the top. All this says that you're not converting very well, and need to have high T4 to get enough T3. You haven't got enough now, and that's what's making you feel bad.

What they should have done is lower your T4 and add in a bit of T3. But as they only look at the TSH, they have no idea about that. You could try asking for some T3 to bring your FT3 level up - that is the most important one - or, ask to see and endo. Or change doctors completely. Or, buy your own T3 and add it in yourself. Your present doctors are too ignorant to make you well.

[Jojozo in reply to greygoose]

Thank you SO much. When I went to see a private doctor he told me my T3 was virtually non-existant and my levels were 'disastrous' (quite dramatic!). He prescribed me Novothyrol but no T3, oddly (unless that is T3 and I'm being dim). Sadly he was so expensive I couldn't afford to go back (he wanted to do all the tests again for £800, on top of his very high fee - eek).

I think the best thing for me to do for now is to try some T3 along with the 125mg of thyroxine I'm taking because my doctor doesn't want me to up my dose. She spoke to another doctor who told her it could take three months for my body to get used to the lower dose but I can't go on feeling like this for that long in the hope things even out. I have zero energy and feel really miserable. My doctor is referring me to an endo though, so fingers crossed they'll be able to help, but I need to do something in the meantime. I've been given the details of another private (but more reasonable) edno, so if I can muster up the energy to rob a bank I may go and see him.

One last question - how long should it take for thyroid meds to kick in? I'm just wondering how quickly I can feel like a normal functioning human being again? (And stop crying about the jeans that fitted me six weeks ago getting stuck at knee level)

[Clutter in reply to Jojozo]

Jojozo, 25mcg Novothyral contains 5mcg T3, 75mcg contains 15mcg and 100mcg contains 20mcg.

epgonline.org/drugs/de/novo...

I'm fine with FT3 4.5 but it isn't enough for everyone. 6.25mcg T3 should raise FT3 >5.0. 12.5mcg should raise near the top of range. Adding T3 to low FT3 can improve energy quite quickly, within a week or two, but isn't so noticeable when level is mid-range and may take 4-6 weeks.

Have you checked ferritin, vitamin D, B12 and folate? Low levels can cause fatigue and lack of energy.

[Jojozo in reply to Clutter]

Thank you so much, that's really helpful. I haven't had those other levels checked but if I go to specialist I can hopefully ask them to do that.

[greygoose in reply to Jojozo]

Novothyrol is T4 and T3 - 100 mcg T4 to 20 mcg T3. Which is a step in the right direction, but it's better to take them seperately if you can. That might be too much T4.

I think three months is a little exaggerated. I would say 6 weeks. Then you see if you need an increase. Which you do if you still have symptoms. But a lot of doctors appear to have played truant the afternoon they 'did' the thyroid! I Don't think you're going to feel any better in three months if you feel bad after six weeks. That's just pie in the sky. I doubt if you're going to suddenly start converting just because you lowered your dose. And it's the lack of T3 that is making you feel bad.

When starting T3, you could feel better pretty quickly. Dépends if he lets you take enough! But it's still going to take a while for the weight to go. You have to be patient about that.

[Jojozo in reply to greygoose]

I thought that may be the case. Thank god I'll be able to wear baggy jumpers again soon! Is there any T3 in Levothyroxine? That's all I've been taking for the past couple of months because I was running out of the Novothyrol so that could also be part of the problem. I had a few tablets left so I took 50mg yesterday and I feel a bit better today. But is that likely to just be coincidence because it's probably wouldn't happen so speedily?

So of course my next question is where do I get my hands on some T3? Will I need to ask my doctor or can I get a private prescription? I was getting the Novothyrol from Belgium but I only had a prescription for a certain amount.

[helvella in reply to Jojozo]

Levothyroxine is T4. T4 is levothyroxine.

Technically, there can be up to 0.5% or 1.0% of T3 in levothyroxine products in the UK and the USA. However, I doubt we ever see that much. The allowance is a maximum that can be found in any product within its claimed life (i.e. up to its expiry date). It is not an amount that is expeted.

[Jojozo in reply to helvella]

This is all making much more sense now. When I was told to cut down my meds I did so by cutting out the Novothyrol I was taking because I was running out anyway, so it sounds like I haven't been having any T3 at all as I wrongly assumed it was in the Levothyroxine too. It explains a lot... Thank goodness for this brilliant site and the lovely, helpful people on it!

[greygoose in reply to Jojozo]

Yes, that explains a lot.

To find out where to get your own T3 you'd have to post another question and ask people to PM you. I've been buying mine from Mexico, and they haven't got any at the moment, so no point in me giving you my address!

I think you might have come to this, anyway, because I heard that Novothyral has been discontinued in Belgium. Don't know if it's true...

[Jojozo in reply to greygoose]

Thanks so much. It would be a shame if it has been discontinued as it did really help when I was using it but I'll look into it!

[helvella in reply to greygoose]

Interesting.

Merck press release (about cardiac care!) earlier this year specifically mentions Novothyral but we all know things change at the drop of a hat. And it might be Belgium but not elsewhere!

merckserono.com/en/products...

[greygoose in reply to helvella]

Yes, I had the impression it was just Belgium. I've since seen if for sale on-line, so it's still around.

[Jojozo in reply to greygoose]

Thank you. I may try emailing the private doctor's PA to see if they can advise on it.

[greygoose in reply to Jojozo]

[shaws]

Did you take levo on the morning of your blood test? Did you fast before it but you can drink water so you are hydrated. Did you leave approx 24 hours between levo and the blood test? They are only pleased with your TSH result.

[Jojozo in reply to shaws]

I'll definitely be doing this in future!

[Jojozo]

It's crazy that I've never known this before, but I'll definitely do it before my next test.

[shaws in reply to Jojozo]

It's only quite recently that we've joined up the dots to recommend how best to get tested. It means that we've a better chance to have a higher TSH rather than a 'normal one' and get the thyroid hormones (or increase) we need. Some GPs believe it's correct to not increase thyroid hormones as soon as our TSH is in the 'normal' range, whereas we may still have clinical symptoms which should be resolved by increasing the dose.

I hope you feel better soon.

[Jojozo in reply to shaws]

Thanks so much. My doctor was determined not to up my dose but even increasing it a little bit has made such a huge difference. I feel almost normal again! I'll definitely take all of the great advice on board for my next test.