Please can you help with confusing test results? - Thyroid UK

Thyroid UK

137,619 members161,384 posts

Please can you help with confusing test results?

TiredDad profile image
14 Replies

Hi all,

I'm a bit baffled by my latest test results and would like to ask if someone could please give me some advice. I've been on 125mcg T4 + 12.5mcg T3 for about 5 months. After 10 weeks I had some tests done that showed my T3 had climbed from 4.52 to 5.2 pmol/L (3.1-6.8). However, after 2-3 more months on the same doses of T3 & T4 I repeated the same tests and found my T3 had dropped again to 4.8 pmol/L. Could anyone explain why this might be? I was expecting it to climb further or stay the same. In the same period my T4 remained exactly the same 17.2 pmol/l (12-22) and my TSH dropped slightly from 0.25 to 0.22mIU/L (0.27 - 4.2).

My symptoms persist, particularly cold intolerance and bloating. Unfortunately, my endocrinologist won't support me taking more T3 even though I think I need to try to reach a point where I feel well or even overdosed and then adjust from there. My pulse is still quite low (64 bpm) and it feels worth it to add more T3. As I seem to be having so much trouble increasing my levels, I'm tempted to double my dose up to 25mcg, but maybe it would be more cautious to just try adding 6.25mcg at first. If it helps, here are the full test results from today:

Inflammation

CRP HS <0.3 mg/l (Range: 0 - 5)

Iron Status

Ferritin 107 ug/L (Range: 30 - 400)

Vitamins

Folate - Serum 10.5 ug/L (Range: > 2.9)

Vitamin B12 - Active 108 pmol/L (Range: 25.1 - 165)

Vitamin D 100 nmol/L (Range: 50 - 200)

Thyroid Hormones

TSH X 0.22 mIU/L (Range: 0.27 - 4.2)

Free T3 4.8 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine 17.2 pmol/l (Range: 12 - 22)

Autoimmunity

Thyroglobulin Antibodies 20.3 IU/mL (Range: 0 - 115)

Thyroid Peroxidase Antibodies 12.4 IU/mL (Range: 0 - 34)

Written by
TiredDad profile image
TiredDad
To view profiles and participate in discussions please or .
Read more about...
14 Replies
SeasideSusie profile image
SeasideSusieRemembering

TiredDad

Did you do both tests under the exact same conditions ie

* time of test, preferably no later than 9am

* nothing to eat or drink before test except water

* last dose of Levo 24 hours before test

* last dose of T3 8-12 hours before test, splitting the 12.5mcg into 2 x 6.25mcg doses and taking last dose 8-12 hours before test.

Please do not double you dose of T3. It should be increased in increments of 6.25mcg (or 5mcg depending on size of tablet) then waiting at least 6-8 weeks before retesting. I recently increased mine from 12.5mcg to 18.75mcg and retest after 8 weeks. I saw the results I expected to see but at 10 weeks I felt better than I did at 8 weeks.

TiredDad profile image
TiredDad in reply to SeasideSusie

Thanks for getting back to me. The short answer to your questions is: yes, I did ensure that all the conditions you mention were the same from one test to the next. That's why I'm puzzled by my T3 level going down.

I'll do as you suggest and just increase by 6.25mcg. I've been ill since 2018 and it's very tempting to try to speed things up a bit by adding more. I'm very much hoping that extra T3 will help with my bloating and cold intolerance.

SeasideSusie profile image
SeasideSusieRemembering in reply to TiredDad

TiredDad

It could just be that your levels settled then and you may need a bit more T3. As mentioned, don't do more than a 6.25mcg increase and see where that takes you, wait at least 10 weeks.

I recently increased mine by 6.25mcg and it took my FT3 from 5.4 to 6 (3.1-6.8) which doesn't seem much but when you work out the percentage through range it increased from 62% to 78% through range, and as I said I felt even better another two weeks after that test. Please don't rush it, it can backfire.

Taking more T3 will probably lower your FT4, mine reduced from 74% through range to 65% with that 6.25mcg increase in T3. Your FT4 may then be too low, you'll have to wait and see. We have to work out where we need each individual hormone, find our own sweet spot. See where the increase in T3 takes you, your next move might be a very small increase in Levo which will increase that reduction in FT4 and also increase the FT3 slightly as well. Small changes can make a big difference when you get to that stage.

Your nutrient levels are generally good but for Ferritin:

Ferritin 107 ug/L (Range: 30 - 400)

Ferritin is recommended to be half way through range although I have seen it said that for males a level of 150ug/L is good. You might just want to boost this, try eating liver, liver pate, black pudding and other iron rich foods regularly (no more than 200g of liver per week due to it's high vit A content. Don't consider taking iron tablets without doing an iron panel first, your ferritin level doesn't suggest iron deficiency so taking tablets when serum iron and saturation % are already good will take them too high and too much iron is as bad as too little.

TiredDad profile image
TiredDad in reply to SeasideSusie

Thanks very much for taking the time to reply. I guess you’re probably right that my levels just took a while to settle.

It’s so hard to be patient when my family and professional life are suffering but I understand what you’re saying. Hopefully it won’t take too much longer now.

Thanks for the tip about ferritin. I can’t say I particularly relish the idea of eating lots of liver or black pudding! Of course, my health must come first though. I think I’ve heard that Morcilla (Spanish blood sausage) is tasty so I may give that a try rather than Black Pudding.

I’m going to ask another question on the forum about whether my bloating symptoms could be hypothyroidism. My GP thinks I may have IBS or GERD, but none of the medicines they’ve tried so far have made any difference. I’m still hoping it could be connected to my thyroid because at least then it could be treated through thyroid hormones rather than being a untreatable mystery. Most of my fatigue symptoms seem to have gone away but I still have cold intolerance so maybe that suggests the bloating could be thyroid-related.

TiredDad profile image
TiredDad in reply to SeasideSusie

I was hoping you might be able to give me some advice. As we discussed before, I added 6.25mcg of T3 to my existing doses of 125mcg of levothyroxine and 12.5mcg of T3. Initially, I felt nothing but in the last few days I've had periods of feeling hot and uncomfortable with some weird sensations in my chest. This afternoon I went for a walk and had uncomfortable prickly sensations all over my torso. It's getting a bit scary and I wonder if I might be best going back to taking 12.5 mcg per day rather than risking heart problems.

Is it normal to have some difficulty adapting to a higher dose of T3 and then for it to settle?

SeasideSusie profile image
SeasideSusieRemembering in reply to TiredDad

TiredDad

Is it normal to have some difficulty adapting to a higher dose of T3 and then for it to settle?

I have never had any problems but we're all different. Some people feel something almost straight after taking their first dose of T3, like a light has been switched on. I felt nothing, nothing at all until eventually, some time after building up my dose, I realised that I didn't feel so bad as I did before. I've been on a dose as high as 31.25mcg with 100mcg Levo (didn't take me over range) but I'm currently optimally medicated with 112.5mcg Levo with 18.75mcg T3, but the higher dose didn't make me have symptoms of any kind.

You could lower your dose back down to 12.5mcg and give it a few days, see what happens. If these sensations go away it could have been due to the extra T3. You can always try again at some point.

TiredDad profile image
TiredDad in reply to SeasideSusie

Thanks. I really appreciate it.

I had hoped adding more T3 would make my bloating and cold intolerance improve. It did make me feel a bit warmer, but also had the unpleasant effects I described. My wife has been saying I should "listen to my body" and not risk anything bad happening to my heart. I'm a bit in two minds because some people have said they settled down after initially feeling bad on a higher dose.

Safety first is probably the way to go so I think I'll go back down to 12.5mcg per day for a week or two and then reassess what I can do instead. One possibility I wondered about was taking 6.25 every 9.5 hours. It would add up to about five doses of t3 per 48 hours, rather than the 6 doses every 48 hours I'm taking at the moment. Does that seem like a sensible idea to you?

Another idea I had was asking my endocrinologist to prescribe me 3x5mcg of T3 per day. The peaks would be a bit lower than 2x6.25 per day, but I would get more in total over a day. Yet another possibility is trying NDT, but that seems like another big process to start from scratch

SeasideSusie profile image
SeasideSusieRemembering in reply to TiredDad

You could try 3 doses 8 hours apart, that works well for SlowDragon . I take 2 doses, first dose is 12.5mcg in the morning and second dose is 6.25mcg 12 hours later. Some people are OK with all in one dose. It's so individual.

TiredDad profile image
TiredDad in reply to SeasideSusie

Thanks. I'm not sure those suggestions would work for me because taking T3 eight hours apart seemed to result in me waking up in the night feeling over-stimulated. After feeling too hot and rather odd recently, I'm wary of taking 12.5mcg in one go. It could work though.

On reflection, my idea of taking it every ten hours probably doesn't make much sense because the body needs a regular pattern for each individual day. Perhaps my best bet is to try to get hold of some smaller doses and take them more often e.g. 3x5mcg of T3 per day.

greygoose profile image
greygoose in reply to TiredDad

it's very tempting to try to speed things up a bit by adding more

But, the point is, it won't speed things up. It might even slow things down because if the increase is too much and affects your adrenals, you could find yourself in the poisition of having to stop T3 and start all over again - or at least reduce the dose and wait even longer before increasing again. Bodies don't like hormones increased too quickly or by too much! :)

TiredDad profile image
TiredDad in reply to greygoose

Thanks very much. Obviously the temptation to increase too quickly is not an urge I should indulge. It's a long haul but I must be getting nearer to the end now.

greygoose profile image
greygoose in reply to TiredDad

No, you shouldn't.

And it is a long haul, but you won't get to the end if you can't increase your dose. It's not going to happen by itself, I'm afraid.

greygoose profile image
greygoose in reply to greygoose

BTW, IBS and GERD are hypo symptoms. But, what you're probably suffering from is low stomach acid. Most hypos do. And that causes the same symptoms as high stomach acid, so doctors don't understand it. What happens is that undigested food sits in the stomach and ferments, causing bloating. So, what you need to do is increase stomach acid, not take doctor-prescribed stuff to lower it even further.

silverfox7 profile image
silverfox7

Hi just had aquick look at your post but spotted you are getting excellent help and advice. It is so very temping to rush in and do everything at once and yes it can backfire badly but just a bit more advice from me!

It takes a full six weeks to get each new dose fully into your body so technically any chance in medication should be retested after each each change but 6-7 weeks after the change. I know that sounds an eternity at times but I feel that this is a stage you should take note off. I can take ages to build up to your required dose but it needs to be done very slowly and you may not feel it is helping but it most likely is but you owe it to yourself to take things very slowly and get it right.

You may also like...

Can you help with new thyroid blood test results, please

Optimal (Range: 50 - 200) Thyroid Hormones TSH X <0.005 mU/L (Range: 0.27 - 4.2) Free T3 5.59...

Confused about anti bodies. Please can someone look at my results.

mIU/L 0.27 - 4.2 FREE THYROXINE 15.7 pmol/l 12.0 - 22.0 FREE T3 4.3 pmol/L 3.1 - 6.8 25 OH Vitamin...

Blood test results - help please!!

range 3.1-6.8 pmol/L Thyroid Peroxidase antibody 8.0 range 0-24 IU/ml TSH 3.380 range...

Hypothyroidism Confusing test results. Can anyone help please. Are they connected.

28/12/21 27.5 Normal range 0-34 TSH 3/12/21 3.06 Normal range 0.27-4.20 1/2/22 3.97...

Medichecks results, can someone take a look please.

break from all supplements. TSH - 0.01 miu/L range 0.27 - 4.2 Free T3 - 4.5 pmol/L range 3.1 -...