Needs some help. Any thoughts welcomed

[post0306]

Hey all... my wife has been dealing with Hasimoto’s for 20 years with all the up and downs that come with doctors and endos playing the numbers game. 6 months ago I took oversight of her thyroid care as I have been in medicine for awhile and was tired of the runaround. I’ve had her on 25mcg of lio (T3) in the mornings and 50mcg of levo (T4) in the evenings (personally funded, not through the NHS). Within a few weeks she felt better with less hair loss, brain fog, bloating etc.

She is 40, has lost 25lbs since January, and is now 128lbs and 5’6”.

Just got her labs back. This was done in the AM without the T4 or T3 dose beforehand as I didn’t want elevated results.

Ranges

TSH mIU/L 0.27 - 4.20

Free Thyroxine pmol/L 12.00 - 22.00

Free T3 pmol/L 3.10 - 6.80

RT 3ng/dL 10.00 - 24.00

Ratio 15.01 - 75.00

THYROGLOBULIN Ab IU/mL 0.00 - 115.00

T peroxidase ab IU/mL 0.00 - 34.00

Results

TSH - 0.013

Free thyroxine 10.1

Free T3 - 5.09

RT3 - 13

Ratio of 25.49

Thyroglobulin antibodies - 29.8

Peroxidase - >9

She was on 100mcg of levo and 10mcg of Lio prior to me shifting her meds with a TSH of 0.010. My goal with her is to reduce and/or eliminate the levo altogether to bring her TSH into a better balance hormonally with the possibility of raising her Lio dose to 37.5 - 25mcg in the morning and another 12.5mcg in the early afternoon.

Question 1 - I understand that most people only produce 25mcg of T3 a day and giving more could have an opposite effect in shutting the receptors down, but I’m wondering if she isn’t able to convert T4 to T3 and I cut out her levo, would she need her T3 bumped up as she has the room on her levels?

Question 2 - do you think her weight loss is why she needs less T4 replacement, and is this why the TSH is still extremely suppressed even on half of her original dose?

Question 3- looking at the labs, meds, and her current wellbeing would anyone recommend a different course of action?

Thank you all for all you do. You are not alone in this and there are many good physicians out there doing the best they can with the resources they have and the training they’ve received. One of the biggest problems is that the NHS has gotten itself into bad contracts with big pharma and is overpaying for Lio which in turn makes the providers limit prescribing Lio to the public. The other reason is an antiquated understanding of how the thyroid really works in accordance with the rest of the body. It has taken me a long time come to the understanding I have of it (which isn’t near as much as the specialist). Don’t give up. We are in this together.

Cheers and thanks for the consideration!!!

PH

[Judithdalston]

Since you mention levels ie ranges could you add them to above results please?

[Judithdalston]

Some other queries- you mention wife's well being but don't actually say how she feels now after initial improvement c4.5 months ago? Do you know from previous tests on levothyroxin only that she ' isn't able to convert T4 to T3'? Presume you've considered gluten free diet for Hashimoto's, and monitoring Vit D, B12, folate and ferritin levels in upper end of test ranges?

[post0306 in reply to Judithdalston]

Sure thing... she’s better and less symptomatic. I’ve checked her vit D, B12 etc and she is great. I’ve considered gluten free as it was reported last year that this is the likely the cause of hashimotos. Wanted to wait until we got this done before excluding gluten as I didnt won’t to wonder which one work if I changed her meds and went gluten free (mixed results are a mess).

Range reference is as follows

TSH mIU/L 0.27 - 4.20

Free Thyroxine pmol/L 12.00 - 22.00

Free T3 pmol/L 3.10 - 6.80

RT 3ng/dL 10.00 - 24.00

Ratio 15.01 - 75.00

THYROGLOBULIN Ab IU/mL 0.00 - 115.00

T peroxidase ab IU/mL 0.00 - 34.00

Thanks

[greygoose]

1) Not sure I really understand the question, but she needs what she needs to feel well. Because, in the end, that's the important thing, how she feels. The labs are just for guidance because so many symptoms can be either hypo or hyper.

2) She needs less T4 because you've increased her T3. And it's the 25 mcg T3 suppressing her TSH.

3) Can't answer that until you give us the ranges and tell us how she feels.

[post0306 in reply to greygoose]

Thanks for the input. I think people are missing the opening line. She felt better and less symptomatic within a few weeks of the change. I understand the negative feedback loop with the thyroid and the pituitary but it’s a little more complex that a t3 suppressing the TSH (as there are more factors involved in conversion, RT3, and uptake) and as her TSH from last year was more suppressed on less Lio... just posted ranges. Hope this helps. Thank you!

[greygoose in reply to post0306]

Yeah, well, it does help if you put the ranges with the actual results.

And last year, she was taking a lot more levo with lio. T4 also lowers TSH. But élimination the T4 is not going to bring her TSH up whist she's taking 37.5 mcg levo - why 37.5 mcg, anyway? Where did that number come from? And why do you want to eliminate the T4? A lot of people find they feel better if there's at least a little T4. It's all trial and error, and you have to feel your way around, finding out what works and what doesn't. Fixing goals ahead of time is not very realistic. Play it by ear.

[post0306 in reply to greygoose]

Great advice my friend. With the half life of Lio I want to have the morning be a boost for her and the 12.5 in the afternoon to get her coverage until the morning dose (just a bit of titration). If that’s in place then she wouldn’t need the t4 to be supplemented. Her own body’s t4 would be there and the extra t3 would be to compensate for any potential t4 deficits she may have. Bit of speculation to be fair. Thanks for the interest. Exciting times ahead. She so much better, motivation and engaging. Going to the gym now, eating better. Her personality has return. I’m just wanted to work on this suppressed TSH if I can without hashing old symptoms. This is the best it’s been in 20 years. It’s the wife I married. Thanks for the thoughts.

Fully answering the why stop T4 replacement? In my understanding of her thyroid she doesn’t need more as she doesn’t convert it well. This could be the reason the symptoms aren’t completely gone. She is about 75% better from what she was and is hopeful for the first Time in 20 years going to get this fixed. It’s a win in my book. I want to work this treatment protocol so I can begin offering treat to others.

All in all I will start with 25mcg of levo and 25 of Lio. Exciting times my friend. Thank you for the help

P

[greygoose in reply to post0306]

You know, there are those that say taking it at night is better, because it's more natural to have higher T3 at night when all the repair and replacement work is going on. So, you could try that, as well.

If that’s in place then she wouldn’t need the t4 to be supplemented. Her own body’s t4 would be there and the extra t3 would be to compensate for any potential t4 deficits she may have.

Yes… I'm not sure that would work. If she has sufficient T3, her thyroid will stop producing altogether. It won't think, oh, need a bit of T4 but won't bother with the T3. And, T3 cannot compensate for T4 deficits because it's not the same hormone. To be honest, nobody really knows what T4 does. Is it just a storage hormone? Or does it have properties of its own? If it does, then no way can you replace it with T4. I think you're taking rather a simplistic view of all this. And, if it does have its own properties, just because you can't convert it wouldn't be a reason for not taking it. I think you have to allow for the fact that she might better need some T4, and not be too rigid in your protocol. That's where traditional medicine goes wrong, thinking that one size fits all.

Take my case, for example - although I'm not at all typical. I was started on 50 mcg levo, and even though I converted extremely well, I wasn't well on levo. Added in some T3 and was better. Tried NDT, and that made me really ill! A was a bed-bound whale! So, went onto T3 only and gradually got better and better. Stayed on it for several years, spent a lot of time finding the ideal dose - 75 mcg - and then took a chance on adding 25 mcg of levo. Felt even better! Then started feeling a little over-medicated. Reduced the T3 to 68.75, and I think that's it! My optimal dose. But, it's taken me 18 years to get to this point! 18 years of trying this and that, different brands, different combos, different doses, different times of day. There are so many variables. And, optimising my nutrients, don't forget that! It's not just about hormones. And, of course, I had to do it all by myself, because every doctor I've seen was hopeless! Didn't even know the difference between T4 and T3! So, don't expect instant success, and don't be down-hearted if, at first, you don't succeed. Takes a lot of patience.

[post0306 in reply to greygoose]

Great story! I’m happy to consider a bit of T4 replacement and see where it lead us. Thanks for the time, encouragement, and thought. Blessings

[greygoose in reply to post0306]

You're welcome.

[shaws in reply to post0306]

The fact that she's improving shows both of you are on the right track.

These three links may be helpful for you to enable her back to full health.

They are chapters from Dr Lowe - copy and past the tinyurls onto a new page.

Chapter 7

tinyurl.com/ycxpz565

Chapter 2

tinyurl.com/ya5blrr2

Chapter 3

tinyurl.com/y7ejh9sh

[post0306 in reply to shaws]

Thank you

[Judithdalston]

Just to add a bit more fuel to this conversation I suggest you look at Aussieinnorfolk's post re T3 results a couple of posts after you and Jimh111's reply and TSH levels etc. Perhaps you should leave your wife to get better a bit, before you alter things again, after years of problems her body will take time to get strength up etc, yet she might be tempted to over do things too ( fortunately she is only 40, and hopefully her joy of life will fully return soon. Good luck to both of you).

[post0306 in reply to Judithdalston]

True. This time, we are going to make slow changes. One or twice a year. Thanks for the encouragement

[shaws]

Welcome to our forum and I am glad you are helping your wife to good health.

Numbers don't matter too much. It is how 'we' the patient feels on a particular dose.

Many researchers have found a combination of T4/T3 suits many but others (me included) only get relief on T3 alone. I take my dose when I get up once daily and have a life.

This is from an Adviser to TUK who was an expert in the use of T3 - especially for patients who are hormone resistant. Dr Lowe died through an accident. He would never prescribe levothyroxine only NDT or T3 for his thyroid hormone resistant patients.

web.archive.org/web/2010103...

From another expert

hormonerestoration.com/Thyr...

p.s. he would never prescribe levothyroxine - only NDT (Natural dessicated thyroid hormones - in use since 1892 and saved lives) or T3 for Thyroid Hormone Resistant patients.

[post0306 in reply to shaws]

Thank you. I’ll read them!

[shaws]

I should have stated that T3 is absorbed quickly into body quickly but its 'effect' of that one dose lasts between one to three days. Dr Lowe stated 'one daily' dose and didn't split doses.

[Hashi-hacker]

Fantastic news your wife is feeling better and your new approach is going in the right direction.

My 2p worth in relation to diet....

Putting the hypothyroid issues to one side, Hashi's is an auto-immune disease where the gut has a massive role to play, which is why there is a huge focus on diet. (I've yet to hear anyone associated with the NHS say this!) Being gluten free plus maybe excluding other common problem foods including dairy, soy, eggs, etc etc and eating a diet that is rich in 'real' food, loads of veggies and regular consumption of eg. liver for vitamins and collagen for gut healing, is the recommended path to healing your gut and boosting your immune system. Here's a resource I use for the background on how to heal from auto-immunity but also recipes thepaleomom.com/. And for all things Hashi's I use Dr Isabella Wentz 'The Thyroid Pharmacist' as a great resource thyroidpharmacist.com/ plus Chris Kresser chriskresser.com/

I have Hashi's and I had a step change in my health when I went 100% dairy free (I was already gluten free as my husband has coeliac disease and it makes life simpler). I stopped having week long headaches and massive depressions. A few months after going fully dairy free I started low dose naltrexone (privately) to help with the auto-immunity and again, there has been reductions in my symptoms but weirdly, my free T3 and one of the thyroid peroxidase antibodies haven't shifted. My point here (like many others have said) is that it's always worth looking at both the symptoms and numbers and not just relying on either. (4.5ml LDN at night in case you are interested).

Switching diet is not for the faint hearted and it's a MAJOR pain in the proverbial when it comes to socialising and being foot loose and fancy free, but having lived with a coeliac and knowing the consequences of slipping up, it is ultimately worth the effort.

Best wishes to both of you x

[post0306 in reply to Hashi-hacker]

Thank you all of the info.y wife says thank you and she will ready this links. Blessings