Feeling exhausted on higher Levo dosage - Thyroid UK

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Feeling exhausted on higher Levo dosage

whatevs profile image
9 Replies

About a fortnight ago I met with my GP and we agreed that i'd raise my Levo dosage to 100/125mcg on alternate days.

Previously I was on 100mcg 5 days a week, 125 2 days a week but then I started to get hypo symptoms again - particularly fatigue, brain fog and aches.

After a week on this alternate day higher dosage I felt absolutely amazing - I had a few days where I felt completely 'normal' and was over the moon.

Now another week later everything has regressed and I feel very similar to how I felt whilst I was under medicated.

I assume that means I need more levo i.e. 125 mcg each day but I'm reluctant to up the dose myself as that resets the clock when it comes to my bloods. However, I'm severely tempted as I feel horrible at the moment and have zero energy.

Any advice ?

FYI when I was on 100mcg a day my TSH was 3.4 (having climbed back up from 1.9 at the same dose earlier in the year). T4 has also come down from 22 to 19.

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whatevs
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9 Replies
Clutter profile image
Clutter

Whatevs,

You were undermedicated on 100mcg to have TSH 3.4. I would try 125mcg daily.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

whatevs profile image
whatevs in reply toClutter

Thanks for the response Clutter.

I'll need to speak to my GP first as I don't have enough 25mcg levo for a daily dosage that will last the next 6 weeks before bloods.

I think she might well ask me to wait till the end of this month once the bloods are done before thinking about upping the dose as she will want the results to guide her.

On the other hand I feel horrible and none of my results point in the least to being overmedicated so hopefully she'll be flexible.

SlowDragon profile image
SlowDragonAdministrator

You say in previous post you have Hashimoto's (high antibodies) so likely your vitamin D, folate, ferritin and B12 are affected

Do you have recent test results for these? Do you supplement?

Are you on or have you tried gluten free diet?

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/why-changi...

scdlifestyle.com/2014/08/th...

whatevs profile image
whatevs in reply toSlowDragon

Hi Slow,

Yes I've been tested for all of those:

Vitamin B12 : 724 (197-771)

Serum Ferritin: 306.5 (30 - 400)

Total 25-hydroxy Vit D: 111.0 (no range)

Serum Folate: 2.6 (3.9 - 20.0) - I am supplementing this atm and tracking it with my doctor.

So only the folate stood out and I'm on folic acid to take care of it.

Gluten free would be ideal but to be honest I don't think it's realistic for me and I feel that I'll see more benefit relieving my symptoms once my levo is dosed correctly.

Thanks for the links !

SlowDragon profile image
SlowDragonAdministrator in reply towhatevs

Your vitamins are impressively high for someone with Hashimoto's

You might find folate or good vitamin B complex that includes folate better than cheap folic acid (some can not process folic acid to folate)

If you start taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Are your antibodies still high?

It is worth testing (have to do do privately NHS won't) to see if they lower

Especially if you do try gluten free diet. Many see significant reduction over time

whatevs profile image
whatevs in reply toSlowDragon

I supplement both D3 and B12 so thats why my levels are pretty high I imagine. I use a PPI due to acid reflux so have no choice there really.

I only had my anti bodies tested once to confirm hashimotos but as you say the NHS reluctant to test again as they don't see the point - same with T3 which they've tested once on my insistence. Luckily conversion doesn't seem to be an issue.

Had an interesting convo with the endo but unfortunately it became quickly apparent that I actually know a bit more than he does. So I had to resort to prompts/quiet persuasion to guide my treatment.

They are also terrified of prescribing any T3 meds , not because of cost necessarily but because of 'risk factors' which have no basis in reality as far as I can tell. Makes me feel very bad for those who are poor convertors.

SlowDragon profile image
SlowDragonAdministrator in reply towhatevs

As you supplement B12 then adding Vitamin B complex is usually recommended too to keep B's in balance

PPI can lower magnesium too

gov.uk/drug-safety-update/p...

When taking vitamin D recommended to add magnesium anyway

Personally I found magnesium as important to improve as vitamin D

naturopathconnect.com/artic...

Are you sure your acid reflux is not low stomach acid. Most who are hypo have low, not high acid

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

whatevs profile image
whatevs in reply toSlowDragon

Yeah I actually started supplementing with mag citrate years ago as my undiagnosed Hashimotos was causing me to have irregular heartbeats/anxiety and the mag helped a lot.

I do take a B complex too in addition to the sublingual B12 so thats covered.

I did try coming off the PPIs I'm on a few months ago but it was a disaster - rebound hell ! Will try again once my Levo is properly dosed because PPIs are horrific for your health long term.

SlowDragon profile image
SlowDragonAdministrator in reply towhatevs

Some members have had good results with slippery elm too

Apple cider vinegar is popular option

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