Levothyroxine optimised?

[catpotter44]

Hi lovely people!

My latest thyroid results were:

TSH 1,27 (0,380-5,330μUI/mL)

(18% through range)

fT4 1,16 (0.38-1,40 ng/dL)

(88% through range)

fT3 3,79 (2,5-3,9pg/mL)

(92% through range)

Miraculously they finally tested fT3 for the first time, and I was so happy to see that I seem to be converting well.

I am currently on 88mcg levo which I started at the end of November. This blood test was taken 4th March. At the time of this blood test I still wasn't feeling great, but the last two months I have been working on gut health and finally am seeing MASSIVE differences. Especially taking Betaine and Pepsin for low stomach acid and suddenly I have more energy and more tolerance to activity.

I also started supplementing vitamin D in November, which went from 19.6 (20-100ng/mL) to 33.5. So I'm continuing to supplement vitamin D (and Magnesium) to get that even higher.

So, my question really is about levothyroxine doses. My levels seem to be well optimised in the ranges, but I am only taking 88mcg, and weigh something around 80kg, so very different from the 1.6/kg body weight usually recommended. I guess there are exceptions of people who need less than the recommended amount. What are people's experiences with this? Would this be correct, despite still being a relatively low dose.

Thanks!

[GlowCoach Administrator]

Different peoples bodies use Levo in different ways and absorb it differently. The calculation is just a guide and not a definite target. The calc has always placed the guide higher than I need.

Your thyroid levels are good but how much it D are you taking? Does it also have K2 to help it go to your bones? It looks like you need a higher dose of D3.

Did you buy a separate folate to raise that further after your post in November?

[catpotter44 in reply to GlowCoach]

Thanks for the reply Jaydee. I figured our bodies are all different. Nice to hear someone else falls under that guide. Vitamin D is 4000IU per day. Should it be coming up more quickly? And I'm not taking it with K, I've seen mixed info and am working a budget.

Regarding the folate, I was going to do a separate post on B vitamins to keep this post focused. I started taking Iggenus b-complex, which is methylated, although I stopped for a little bit and just started again yesterday.

[GlowCoach Administrator in reply to catpotter44]

I've just noticed you're in Spain and the range is different so you're not as low in vit D as I thought. Keep taking what you are taking, maybe add in an extra one every 3 days.

Vit K helps the vit D go to your bones where you need it. You can buy combined vit D + K2 supplements.

You will need to continuously take the b complex otherwise your numbers will just crash.

[catpotter44 in reply to GlowCoach]

Ah, yes, the ng/mL not pmol. Always confusing. Great, thanks for the advice! Aiming to get up to at least 60ng/mL is what I've seen recommended.

I'm learning that about the B complex. Each time I try 'testing' whether I really need it I notice symptoms creep back in. I'm just always trying to be sensible and take only what's really needed, and not be on millions of supplements, but it's a work in progress figuring out what's what. Why is this the case though? Is it simply because of hypothyroidism, or is it because a high percentage of people have the MTFHR gene problem? Does this mean I will need to be on the B complex long term? I'm always curious to understand the reason or mechanism.

[GlowCoach Administrator in reply to catpotter44]

Its likely a combination of both hypo low stomach acid and possibly MTHFR. MTHFR people often need more than the 400mcg folate in a B complex though to get to optimal.

I'd say you will need the B complex long term for being hypo alone.

If you're aiming for 60 on vit D you may need to increase what you're taking. Its had plenty of time on the dose you're on already.

[catpotter44 in reply to GlowCoach]

Great. Thanks for all the info!

[greygoose]

Would this be correct, despite still being a relatively low dose.

I doubt it. And you appear to be converting more T4 to T3 than you're actually taking. So, despite the low antibodies, one has consider that you do actually have Hashi's. Have you ever had a thyroid scan?

[catpotter44 in reply to greygoose]

Hi greygoose, thanks for the reply. Hmm, is that unusual? What would that indicate? (The high conversion of T3). I have had a thyroid scan, they didn't flag anything unusual, although it was in Spanish, but I think they were saying it was more or less normal. I had a thyroglassal duct cyst removed as a kid (two times actually) and wonder if it could be related to that too.

As my antibodies were TG, not TPO,I've found there is much less info available and had to assume it meant autoimmunity as that was the advice from the lab (it was a private test).

[SlowDragon Administrator in reply to catpotter44]

Yes……..Both TG and/or TPO antibodies confirms autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

[catpotter44 in reply to SlowDragon]

Thanks for the confirmation Slow Dragon! A while ago I figured it must be autoimmune, but when you're by yourself figuring things out, sometimes doubts creep in. I guess when I had the scan, either damage wasn't far enough along to be noticeable or I have Ord's. But I guess it doesn't matter either way.

I had my antibodies tested in March and this time they came back negative. So, I guess gluten free and supplements and lifestyle etc might be helping. Or they are just naturally fluctuating.

Would you say that the low dose could be normal? Maybe my thyroid is still producing some hormones itself?

[greygoose in reply to catpotter44]

What would that indicate? (The high conversion of T3).

Well, you can't convert more T4 than you're taking. That's a physical impossibility. The FT3 is usually slightly lower than the FT4 percentage-wise. Yours is 4 % higher, which is not 'normal'. And, by the look of it, it hasn't been that high for very long because the TSH hasn't had time to catch up with it yet. 'Normally' with Frees that high, the TSH would be suppressed.

So, that extra T3 must come from somewhere, and the only other place it can come from is your thyroid. But, with just the 'normal' workings of the thyroid you would still expect the FT4 to be higher than the FT3. So, the only other conclusion I can draw is that it has come from a Hashi's 'hyper' swing, where the dying cells drop their stocks of thyroid hormone into the blood causing Free levels to to rise temporarily.

As my antibodies were TG, not TPO,I've found there is much less info available and had to assume it meant autoimmunity as that was the advice from the lab (it was a private test).

So, your TG antibodies were raised? Well, that still means positive for Hashi's. So, that's the explanation. Nothing to do with your dose or your conversion.

[catpotter44 in reply to greygoose]

Ah, I see what you're saying. I didn't get it at first. So most likely I had a hyper swing some time before the blood test. The strange thing is that my antibodies were negative in that test. But I suppose there are other antibodies that aren't well known/tested for. Or do antibodies clear out faster than T3?

So, your TG antibodies were raised?

Yes, TG antibodies were raised January last year in a private test I had (my doctor at the time wouldn't test it). I'm now with a different doctor and they tested antibodies along with all my hormones in March this year which is when these results are from. At this time antibodies were negative.

[greygoose in reply to catpotter44]

do antibodies clear out faster than T3?

Antibodies never clear out completely. And everybody has some, even when they don't have Hashi's. But, they do fluctuate. Were both antibodies tested this time?

Antibodies have a job to do. When you have a 'hyper' swing, not only do thyroid hormones leak into the blood, but also traces of the proteins TPO (Thyroid Peroxidase) and Tg (Thyroidglobulin), necessary for making thyroid hormones, also leak into the blood, where they don't belong. So, the TPO antibodes and the Tg antibodies come along to clean them up. Once their job is done, the reduce in number - what we call 'fluctuate'. And, as far as I know, those are the only two antibodies concerned with Hashi's. Although some Hashi's people do have high levels of TRAB, which is usually associated with Graves', but that's another story. And they are rarely tested when one has Hashi's.

[catpotter44 in reply to greygoose]

Yes, they did test both antibodies this time. TPO has been tested numerous times and is always negative at 0.9 or below. TG tested once positive (5.86 range >4.11) in a private test and this last time negative at <0.9. I've also had Rheumatoid Factor tested a few times, and although it comes out 'in range' not over range, it's not nothing. The range is 1.4-14 and I have had 8.4, 5.7 and 8.5. My Dad has RA.

I was asking about the rate they clear out because you suggested the high T3 was due to release from thyroid attack, but I thought it curious that antibodies were down when they had previously been high.

Regarding other antibodies, I heard it mentioned, by Dr Brad Bodle I believe, that there are other antibodies that aren't tested or haven't been researched much. This makes sense to me, that would be how someone could have seronegative autoimmune disease. Really there is still so much unknown.

[greygoose in reply to catpotter44]

You're right. Far too much is still unknown. And very little research is done because there's no money in it! There could be one hell of a lot of other antibodies we don't know about, but as we don't know, we can't comment. As far as I know - we know - TPO and Tg are the only antibodies used to diagnose autoimmune thyroiditis. And there is a certain percentage of Hashi's people that never have over-range antibodies. And they are diagnosed with Hashi's by ultrasound, when the damage to the gland is advanced enough to be noticable. Other than that, we can only go by fluctuations in blood test results, such as yours.

[catpotter44 in reply to greygoose]

Sad isn't it? And then the doctor's are arrogant enough to take the tiny window of knowledge they have (which is even smaller than the tiny window of existing knowledge) to say we are all fine!

[greygoose in reply to catpotter44]

Well, they really don't care, do they. If you ask them why they became a doctor, 9/10 will say because they 'wanted to help people'. But only selected people, only those with a visual problem, like a broken leg. Or someone having a heart attack, or something like that. Hypo is very much an invisible illness (if you don't know what to look for, which they don't) so they don't really believe it exists. They think we're all making a fuss about nothing: attention-seeking, drug-seeking hypochondriacs. And they think that if they tell us we're actually 'fine', we'll believe it and just go away!

[catpotter44 in reply to greygoose]

Exactly. I've been on the thyroid rollercoaster a few years now and I still find it unbelievable how stupid and uncaring they are. And we are sold this myth of how amazing doctor's are. Like, seriously, they don't seem to understand or care to understand about basic biology. 'Wanting to help people' should be translated as wanting to have their ego stroked, because if you save someone from a heart attack you can appear to be a hero. It's so infuriating, and one can rant and rant and never get the frustration out of one's system. So, thanks for being a part of this little rant today. Thanks goodness for this incredible forum and the support, understanding, comradery and information it provides. So, thank you

[greygoose in reply to catpotter44]

You're welcome.