How to introduce T3

[Sarahsmurfs]

So we have been battling with the Endo for a while who is still reluctant to introduce t3! So we have had a medichecks blood test done and sourced our own t3. Blood results are as follows;

Thyroid stimulating hormone 21 mIU/L (0.27 - 4.20)

Free thyroxine 16.500 pmol/L (12.00 - 22.00)

Free T3 2.92 pmol/L (3.10 - 6.80)

Thyroglobulin antibody <10 IU/mL (0.00 - 115.00)

Thyroid peroxidase antibodies <90 IU/mL (0.00 - 34.00)

Active B12 55.400 pmol/L (37.50 - 188.00)

Folate (serum) 4.04 ug/L (3.89 - 26.80)

25 OH vitamin D 113 Nmol/L (50.00 - 200.00)

CRP - high sensitivity 0.67 mg/L (0.00 - 5.00)

Ferritin 89.1 ug/L (13.00 - 150.00)

My mum is currently on 100 (think it’s mcg) of thyroxine and wondered how best to introduce the t3? Any advice would be great. Thank you all in advance.

[greygoose]

I would not recommend starting her on T3 with such a high TSH. What is her doctor thinking about! She should have an increase of levo now.

She probably does have a conversion problem, but best to be sure by getting her TSH down to 1 or under, and then see what's happening.

How does she take her levo? Does she take it on an empty stomach, waiting at least one hour before eating or drinking anything other than water? Does she take any other supplements or medication at the same time?

[Sarahsmurfs in reply to greygoose]

She used to take it at night and now takes it in the morning. When they increased her t4 her tsh just went higher!

[Sarahsmurfs in reply to Sarahsmurfs]

She takes no other medication. She is severely unwell and drs just aren’t interested in doing anything to her Levo or help with her not converting either!

[Jazzw in reply to Sarahsmurfs]

It’s horrible to witness, isn’t it? I have to agree with greygoose though - it doesn’t feel right to introduce T3 when increasing levothyroxine might be at least part of the solution. Did your mother do these blood tests fasting (she hadn’t taken her Levo prior to this test being done, had she??). It’s weird because her FT4 is higher than I’d expect - which would suggest she’s absorbing it. But her FT3 level is woeful even though her ferritin level is at a decent enough level to convert T4 to T3. Bit of a mystery this one...

[Sarahsmurfs in reply to Jazzw]

She is also losing weight rapidly and currently weighs about 6 stone! According to bloods she doesn’t have Hashimoto or do I need to look at something else!

[Jazzw in reply to Sarahsmurfs]

I’ve just gone back to read your previous posts and now get a bit more of the picture. And you’re now in that horrible position where you could wait forever for the doctors to act - or just try this T3 you’ve got your mitts on and see what happens. But - please keep in mind, this might not be a thyroid problem. There could be something else going on - for example, a problem with her liver. Is she telling you everything? Have you been to a doctor’s appointment with her yet? Might be worth doing so, and insisting on more tests - because no action shouldn’t be an option here!

What size are your T3 tablets? How many μg of liothyronine are in each one? 25mcg?

[Sarahsmurfs in reply to Jazzw]

I haven’t been to an appointment yet but she has had absolutely every blood test, X-ray, scan and camera that is possible! I’m sure I know all the history as I’ve seen all dr reports and paperwork too. Yes, the t3 tablets are 25mcg.

[Jazzw in reply to Sarahsmurfs]

OK. Honestly - if it was me, I’d go with her to the doctor and ask him to tell you both what he’s going to do to address the issues - the weight loss, the constipation etc. You may have to point out that weight loss can be a sign of under active thyroid because basically, she can’t be bothered to eat and when she does she gets constipated (another key indicator of hypothyroidism). Many doctors mistakenly think they shouldn’t raise levothyroxine dose when someone’s losing weight because they think it means the patient’s overmedicated. This clearly isn’t the case here - not with a TSH of over 20. So I’d politely suggest to the doctor that her Levo dose is increased by 25mcg and that increases are attempted until her TSH is much closer to 1.0. And if that doesn’t help, then other tests definitely need doing. Her B12 and folate are low and I saw from an earlier post that her Vit D was woeful. What did the doctor prescribe for that? Hopefully he recognised she needed lots of Vit D and didn’t send her away with a pitiful amount...

I say all this because going it alone is a big step and a big responsibility and not something to be done without every other possibility being tried. If there is something else wrong, then giving T3 might be a bit like throwing petrol on a fire. If you get nowhere with seeing the doctor, then ok, give it a go. But you’d need to cut that T3 into tiny pieces because 25mcg is much too big a dose to try. You’d need to keep the 100mcg Levo going too. Commonly we suggest starting with no more than 2.5mcg in one go - a tenth of a tablet. That’s because it can have unpredictable effects, especially on people who are debilitated already.

[Sarahsmurfs in reply to Jazzw]

The Endo did initially increase her dose to 100/125 on alternate days but her tsh got higher. Do he put her back on 100 daily instead. 😱 I am feeling so perplexed by this whole situation. I certainly don’t want to give her t3 if there is a risk it could make her worse!

[Jazzw in reply to Sarahsmurfs]

I know, it’s really tough isn’t it? x

As SlowDragon asked - is she definitely taking her levothyroxine every day? Because if she is forgetting, then that will be a huge part of the problem. And the doctors might well be assuming she isn’t taking them (they often do - so if she *is* taking them, they need to know that you know she is (if that makes sense).

First step - make an appointment and go with her to the GP and get a feel for what’s really going on and what the plan is. As I said, that’s definitely where I’d start. You may still need that T3 - but give it one last try at the doctor’s.

[Sarahsmurfs in reply to Jazzw]

My dad is looking after her and she is definately taking her Levo daily. The gp is not at all interested in her thyroid and focuses purely on her constipation when she sees the gp.

[Sarahsmurfs in reply to Jazzw]

The bloods weren’t taken until lunchtime but she hadn’t had her Levo dose beforehand. And had only had half a portion of complan first thing!

[greygoose in reply to Sarahsmurfs]

Ah, well, if she'd taken her levo before the test, that makes more sense. We usually tell people to leave 24 hours between the last dose of levo and the blood draw. So, she has a false high FT4. If that were lower, it would fit in with the TSH and the T3. So, it's possible that she doesn't even have a conversion problem, but has an absorption problem in the gut or low stomach acid.

She does need an increase in dose, though. 100 mcg is obviously not enough. And, she could try taking vit c with it to increase absorption. But, investigation of the gut would be in order if you can persuade your doctor to get his you-know-what in gear and do something.

[Sarahsmurfs in reply to greygoose]

She didn’t take her Levo before the bloods were taken.

[greygoose in reply to Sarahsmurfs]

Oh, gosh! Sorry! I misread that. OK, back to the drawing board.

[Hidden in reply to Sarahsmurfs]

Did she have her blood test first thing fasting and not taking her Levo for 24 hours prior to the test?

[greygoose in reply to Sarahsmurfs]

So, what is the doctor doing about that? But, you didn't answer my question. Does she take it on an empty stomach, etc.? Some people take it in the morning, but take it with breakfast. Or with their vit D. It's very important that the protocol is respected for maximum absorption. And that will be just as important for T3.

Did she perhaps change her way of taking it when her dose was increased? Does she have Hashi's? Was the brand changed when the dose was? 100 mcg is still not a very high dose, but a TSH of 21 is very high for someone taking levo. So, we need to work out why before anything else.

[Sarahsmurfs in reply to greygoose]

The dr is doing absolutely nothing. We’ve seen gp’s and the private Endo! They just want to do blood tests after blood test and have acknowledged her levels but won’t chamge anything! I would have to check about whether it is on an empty stomach but suspect it is as she is currently in severe pain from condtjpation and eats very little. She also has no energy and can barely get to the loo! She changed to the morning as the private Endo suggested that. Her brand of Levo has never changed either.

[MaisieGray in reply to Sarahsmurfs]

I agree with all previous responses to you. Re. the okay-ish FT4 in conjunction with the high TSH, does your Mum take any biotin (vit B 7) - either on its own or within a multivitamin supplement? Biotin can skew results depending on the assay used, and in some cases, extra biotin causes falsely high results on tests and in others, falsely low. In one test, it was proved to distort up to 40% of all tests measuring each of 9 different hormones, iron, and cancer markers. However, that neither the GP nor the Endo are taking action in response to her high TSH level as presented, or retesting to check for a blip, (assuming you've shown these result to one or other of them) is beyond poor.

[greygoose in reply to Sarahsmurfs]

Well, I'm guessing the endo suggested that because he had no idea what else to suggest! People very often absorb better when taking it at night. But, are you absolutely sure she takes it every day? If she's feeling that bad, it could be tempting not to bother - I know the feeling!

Glad to hear her brand hasn't changed. So, I repeat what I said above just now, to try taking vit C. That could help with her constipation, too. She should start on a low dose and slowly work her way up until things improve.

And, if they continue to refuse to increase her dose with that high TSH, then you should report them to their superiors for malpractice.

[SlowDragon Administrator in reply to Sarahsmurfs]

Well many people find night time dosing for Levothyroxine is much more effective

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Magnesium supplements can help with constipation and good for low vitamin D

Must be four hours away from taking Levo

Calm vitality magnesium powder is cheap and easy to use. Starting with low dose and increase slowly until get desired effect

[SlowDragon Administrator]

Does she have her Levothyroxine in a weekly pill dispenser

It's extremely easy to forget to take a pill every day, especially when her TSH is so high

Keeping the dispenser by her bed to take on waking......nothing other than WATER for at least an hour after

Her B12 and folate are too low as well.

Has she had coeliac test? Or endoscopy?

[silverfox7]

Just a thought but if she generally isn't eating much and therefore possibly not drinking much either then I'm wondering if she isn't taking her medication with a full glass of water so may be the tablet isn't gettting down to where it needs to be for maximum absorption. More liquid would help with her other problem as well. I know watching her like a hawk sounds harsh when it's your mum but may be she really needs that to make sure she is getting the correct dose in the right place and getting some food at the right time etc.Years ago my husband and I were staying with his aunt and uncle on holiday. We were woken in the night by frequently toilet flushing and an apparent early morning doctor visit. It appeared to be gall stones and the doctor said no food for the rest on the day, just water. So early afternoon we went shopping and left her with her husband to sort out the washing. She looked very furtive when we returned and said she hadn't eaten anything but we found sweets pushed down the side of the chair! So after she had stopped denying it she said she didn't think sweets counted. I've not saying your mum is devious as my husband's aunt but sometimes they aren't being as truthful as they sound through ignorance rather than deceit. I do hope you get to the bottom of it though as it must be stressful for you all and mum can't be feeling good either.