levo increase! : Hi all about a month ago I... - Thyroid UK

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levo increase!

Doris11 profile image
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Hi all about a month ago I increased my levo from 100mcgs to 112mcgs daily as per body weight thing! I am unfortunately 100kgs 😟 I am feeling a bit tired again sleeping a lot and not having much energy! I am doing something wrong? 😑

PS still have the ongoing saga with the deficient B12 and folate! but talking to my GP next week. about it.

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Doris11 profile image
Doris11
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helvella profile image
helvellaAdministratorThyroid UK

I'm not at all keen on body weight being used for dosing. The approach is useful after a thyroidectomy. With caution, it can be used to indicate that a dose is very low or high.

I'd very much rather you based changes on a combination of test results and how you are feeling - than on the scales!

From a purely personal point of view, I take much less levothyroxine than weight would suggest.

helvella's calculation document and spreadsheet can be can be found by following this link:

helvella - Estimation of Levothyroxine Dosing in Adults

A discussion about the use of formulas to estimate levothyroxine dosing. Includes link to a downloadable spreadsheet which calculates several of these.

helvella.blogspot.com/p/hel...

Doris11 profile image
Doris11 in reply to helvella

Shall I go back to 100mcgs daily then and focus more on my B12 problems?

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helvella profile image
helvellaAdministratorThyroid UK in reply to Doris11

Quite possibly, I would. But those results are from five months ago.

And remember that you could have many Intrinsic Factor antibodies tests - all negative, yet still actually have Pernicious Anaemia.

Doris11 profile image
Doris11 in reply to helvella

Thank you will do, you looked at my last messages thank you 🙏 My IF was neg and celiac was too! Having problems with my tummy at the moment too 🙈 I had x2 gastroenteritis Xmas and after so am going to asked to be referred to gastrology to see if I have any gastritis… many thanks 🙏

Shelleyblue profile image
Shelleyblue in reply to Doris11

I agree with helvella about the dosing. Mine would 175mcg levothyroxine, but everytime they increased my dose to 100mcg or above I became very poorly and felt over medicated. I have seen that your fT3 is quite low compared to your fT4. I would ask to be referred to an endocrinologist and ask about adding in liothyronine (T3) tablets. 🤔 I take 75mcg levothyroxine and 20mcg liothyronine daily and feel so much better. 🙂 It is a bit of a fight to get it, and you may have to keep asking for it and it also depends on where you live to as to whether the NHS gives it to you, but there are other options if yiu can afford it. 😕

Dmhdff profile image
Dmhdff in reply to Shelleyblue

It is a fight to get a prescription for T3 in the U.S. as well. I have been on 25 mcg 2x a day for ten years. Moved to another state and have been to four Dr’s who have all told me to get off of it immediately. One of them practically yelled at me saying, T3 is extremely dangerous and you are going to die of heart attack or stroke if you stay on it! She also said getting off of T3 is going to be extremely hard, she said. The side effects associated with getting off of it are harsh. I am now about 6 weeks off of it. I have nerve pain, pins and needles in my feet when I wake up and step out of bed in the morning. To me this tells me I am having problems with blood circulation to my legs and feet. I also have pretty extreme soreness in my calves and cramping in calves at night. Looking it up, it has something to do with vascular dilation and construction of the blood vessels, apparently vessels relax on T3 and when you go off they constrict, plus blood cells become smaller on T3 and larger when you go off of it, so with the constriction of vessels and larger blood cells, clotting can become an issue. I am 58, so all of this is concerning to me. I felt really good on T3. I have felt completely normal for ten years, no exhaustion, and no feeling I need to sleep during the day, but to what end? I am wondering if I ever should have been put on T3 at all. At the time it felt life changing but the heart and vascular stuff is scary. The Dr who prescribed it said most Dr’s don’t understand T3. Is she right or are the other more conservative Dr’s right? It’s hard to know who to believe.

Shelleyblue profile image
Shelleyblue in reply to Dmhdff

I would say the Dr that prescribed it in the beginning was right. The Dr that almost shouted at you to come off liothyronine was wrong !! And as you said, you felt so much better being on it. :/

SlowDragon profile image
SlowDragonAdministrator

Exactly what have you been taking for low B12

Which B complex?

Are you now on strictly gluten free diet

If not …….it’s always trying especially with any gut issues

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

As you test is negative you can now trial going on strictly gluten free diet 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Happyfairy09 profile image
Happyfairy09 in reply to SlowDragon

Morning SlowDragon, just reading through your reply comment, how do patients get tested to see whether they have Hashimoto's ? I've had left side removed of thyroid, due to nodule goitre, now have really chronic gut and absorption issues,currently being tested for crohns & Celiac, thanks in advance

SlowDragon profile image
SlowDragonAdministrator in reply to Happyfairy09

Test both TPO and TG thyroid antibodies

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Doris11 profile image
Doris11 in reply to SlowDragon

Thank you SlowDragon i take Ingenuus B Complex/ liposomal B12 and have been taking for over a year! I am a vegetarian and do have a gastric band which I believe isn’t helping my absorption problem 🙄.

SlowDragon profile image
SlowDragonAdministrator in reply to Doris11

You need a good separate B12 as well as vitamin B complex

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

Are you taking 2 Igennus tablets per day or only one

Post discussing different B complex

healthunlocked.com/thyroidu...

Doris11 profile image
Doris11 in reply to SlowDragon

Only taking 1 tab daily of Ingeenus 🙈

SlowDragon profile image
SlowDragonAdministrator in reply to Doris11

Well many people do fine on one per day

But as a vegetarian and gastric band…..you’re likely to need 2 per day

In week before blood test, when you stop vitamin B complex, you probably want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

SlowDragon profile image
SlowDragonAdministrator in reply to Doris11

As a vegetarian you’re likely to always need separate B12 in addition to daily vitamin B complex

SlowDragon profile image
SlowDragonAdministrator

Suggest you get bloods retested

September is now a while ago

janeroar profile image
janeroar

125mcg is a pretty average dose so 112 isnt on average a high dose. Chances are it is close to what you need, your results are showing midrange t4 and t3 with decent TSH with room for a bit more. But probably there are other pieces in the jigsaw that you need to put in place to achieve your optimal health.

You might find the best benefit from focussing on getting your other levels up eg B12 and folate and as suggested here going strictly gluten free and trying to stick to a diet that is free from processed foods (eg gluten free bread and baked goods). Switch to olive oil if you have seed oils. You want to try and give your body what it needs to right itself. You’ll probably find you lose weight this way but let the quality of the food you eat be your main focus.

WaystarRoyco profile image
WaystarRoyco

If you have only been on this new dose for a month, there’s a chance the tiredness is part of your body adapting to a new dose. I increased levothyroxine last autumn and had a similar experience but around 6 weeks in started to notice an improvement. Just a thought.

Mitch27 profile image
Mitch27

I am pretty much in the same boat and struggling for years. I put on a lit of weight with Levo and I went off it for a year then as soon as I was back on it within 6 weeks I picked up 5kg no change in diet!! I struggle yo lose weight and I am careful what I eat because of the weight issues. I have very little willpower so found it difficult to go gluten free or follow one specific diet even though I don't eat a lot ! I'm now back on Armour NDt which costs a fortune but I do feel better on it as I don't have as much lethargy as I do on levo. I am going to try another brand of ndt as the price goes up a lot when I need an increase which is sad as it does seem to help and like you I'm around 100kg and just cannot shift anything so much so I am thinking of weight loss surgery as it depresses me so much 😒

Digger0 profile image
Digger0

I'm 64kg and I'm on 100/125 alternate days.

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