Levo dose increase effects: Hi, my husband has... - Thyroid UK

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Levo dose increase effects

Zmalp profile image
15 Replies

Hi, my husband has recently started treatment and just gone from 25-50 daily levo. He’s started sweating again and is experiencing a bit of agitation similar to but currently lower level than he had when he was in a hyper phase a couple of years ago. Is this normal initially and will it settle or get worse? He’s 5 days into the increased dose and worried about it.

We think he got heavily glutened a week ago which might exacerbate it but we can’t be sure.

This is my ignorance on levo - if it’s slow acting, I didn’t think he’d see an effect immediately? But he did on starting the dose at 25 so I thought I’d ask people here with more experience.

Currently he still feels rubbish with autoimmune symptoms but now also feels irritable- is that usual?

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Zmalp
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15 Replies
Strongerme23 profile image
Strongerme23

I did not do well on levothyroxine at all. At 100 mcg, gave me panic attacks, shaking hands, anxiety, etc. My endo said to get anxiety meds. I fired him and got a naturopath doctor, who put me on natural desiccated thyroid (porcine) and that fixed everything. It's a constant adjustment, as the product seems to fluctuate, so I have to adjust upwards and downwards to maintain energy, temperature, etc. But I can't handle synthetics at all. His symptoms are thyrotoxicosis. Either dial back on levo or try something else.

tattybogle profile image
tattybogle in reply to Strongerme23

Strongerme23 ...in this case i think it's much too soon to suggest a reduced dose / or something else (NDT) ....Levo dose has only just been increased for 25 to 50mcg . It is quite common to feel a bit overmedicated for a week or so after a dose increase .... things usually settle down for most people as the body adjusts to the change in dose .

some people find they need to do the increase more slowly, ie alternate 25 / 50mcg for a few weeks ... an sometimes it helps people to split the Levo dose into 2 smaller daily doses half am / half at beditime.

true 'thyrotixicosis' (too much T4/T3) is unlikely to be the issue when still on such a small dose of Levo ..symptoms at this point much more likely to be a transient reaction to the increase in hormone level . rather than 'too much hormone' .

In UK , starting NDT at this point is likely to complicate NHS treatment for someone recently diagnosed and only just starting Levo ....if they self sourced it , it would almost certainly lower their TSH to a level that means their GP would consider reducing /stopping the Levo prescription .. therefore that patient would never get to find out if they could be well using Levo.. and since Levo is free in UK , and NDT is not easily accessible and is hardly ever prescribed by NHS. it makes sense to try Levo properly before looking for something else.

radd profile image
radd in reply to Strongerme23

Strongerme23

His symptoms are thyrotoxicosis’.

You cannot know this without labs and further symptom breakdown. Even when severely hypothyroid members may suffer issues initially introducing Levo or with each subsequent dose raise for multiple reasons such as poor adrenal reserve (secreting adrenaline in preference to low cortisol) or tablet expedients that can not be tolerated, etc. 

    Zmalp

I too suffered auditory hallucinations as part of a three day long psychotic episode previous to being optimally medicated. I had suffered cognitive decline over many years but after introducing T3 meds my general mental capacity expanded in all areas whilst whooshes and effervescent bubbles in my head continued until T3 levels had been optimal for at least a couple of years.

Insufficient thyroid hormones are responsible for a large range of symptoms and it seems the longer it has been allowed to remain, the more far reaching the negative effects and the longer the reversal. Fatigue, pain and brain fog are well known symptoms, and phantom odours are common on the forum. At one stage I even had such painful pressure in each eyeball, I was unable to move them side to side.

I agree with others below regarding splitting med doses which can be gentler on the systems. If your husband is still taking multivits containing possible additional iodine with elevated TPOAb's, this risks driving further Hashi attacks.

Has cortisol been tested, usually a 9am blood draw? Have you had TRAb’s results back? Has FT3 been tested yet?

Zmalp profile image
Zmalp in reply to radd

thank you so much - I’m terrified it’s encephalitis because the memory issue is so awful. It’s been four years of misdiagnosis, and looking back it was coming on very slowly for a long time before that. It’s such a relief when other people have had severe issues and overcome them.

He was processing much better last week but no memory improvement as yet - too soon, of course. But the processing and mood lift was really good news. Meds increased on Friday.

He dropped the multivitamin this weekend when I went through all his vits with him as SlowDragon warned me last week about the iodine.

The TRAb isn’t back and the phlebotomist hadn’t ordered it (did TPO again)despite GP instructions, so I went into the surgery yesterday to rebook it for next Friday with his free testosterone test. So frustrating but sadly typical of stressed NHS staff at present. I work with a lot of them professionally and they’re on their knees so I don’t blame them personally

He hasn’t had a cortisol for 2 years. Will ask about that on next phone appointment

Thanks again

radd profile image
radd in reply to Zmalp

Zmalp,

I can not stress enough the importance off having FT3 levels tested.

The HPT axis (hypothalamic-pituitary-thyroid) is a complex interplay and balance between hormones levels, deiodinase (enzymes that activate/deactivate thyroid hormones), transporter proteins, and receptors. 

Inadequate thyroid hormones cause dys-regulation in these balances, causing low T3 levels which is a neurotransmitter in itself as well as a thyroid hormone. T3 has more receptors in the brain that anywhere else within the body regulating the action of serotonin, noradrenaline, GABA, etc. Insufficient amounts can result in neurotransmitter abnormalities and neurological changes.

When doctors are uncooperative members use private labs and post results here for members comment. thyroiduk.org/help-and-supp...

If you like reading/learning my suggestions would be "Why Isn't My Brain Working?' by Datis Kharrazian for cognitive/memory stuff, 'Your Thyroid & How To Keep It Healthy' by Dr Barry Peatfield for general physiology and 'The Root Cause' by Isabella Wentz for Hashimoto issues.

Also regarding the Hashi side, Datis Kharrizian claims a direct gut-brain connection has been evidenced by research showing G.I. immune cells (enteric glial) triggering the brains astroglial immune cells. Therefore, head stuff can be the result of uncontrolled systemic inflammation extending to the brain, and why some members have found eating gluten gives them brain fog/headaches caused by the generated brain inflammation.

Zmalp profile image
Zmalp in reply to radd

Thanks for the references to read 👍I’ll check them out

I got his FT3 done myself twice this year but I don’t really understand the results except that they are in range.

January , when he was less symptomatic than now was 5.85 (range 3.3 to 6.8)

October, when the current flare up was well underway was 4.99.

His T4 had also dropped compared to January and his TSH was up.

Having seen his reaction when he’s had gluten, I’m in complete agreement about the inflammation affecting the brain.

Lalatoot profile image
Lalatoot

Splitting the dose may help. I found it gentler on my system if I took my levo in 2 doses. The doses don't need to be equally sized. I take them first thing and bedtime. But it can be anytime as long as you take them away from food and other meds so that the levo can be absorbed effectively.

Changes in dose can be difficult. The body has to adapt and adjust to different levels of thyroid hormones and this affects our whole system. For me I feel great the first week of a dose change and then weeks 2 and 3 I feel awful before things generally improve.

SlowDragon profile image
SlowDragonAdministrator

Is this 2 x 25mcg tablets

Or a 50mcg tablet…..and if so is it same brand levothyroxine as 25mcg tablet?

Suggest he try splitting the dose. It’s common to feel worse initially as dose is increased ……

Try 25mcg waking and 25mcg at bedtime (or late afternoon if prefer)

Getting glutened wont have helped either

Zmalp profile image
Zmalp in reply to SlowDragon

2x25 and same brand. I wasn’t sure about him doing that but the new box of 50 is a different brand and he had lots of 25 left.

He’s often ill for 10 days after gluten sadly

Thanks 🙏

SlowDragon profile image
SlowDragonAdministrator in reply to Zmalp

which brand is 25mcg

Which brand is 50mcg

Zmalp profile image
Zmalp in reply to SlowDragon

25mg is Wockhardt and the 50 is Accord.

bubbatetley profile image
bubbatetley in reply to SlowDragon

Hi SlowDragon, I hope you are doing ok.

My GP has now increased my Levo to 75mcg daily from 50mcg. My recent bloods are now

TSH 1.06/ 0,27 - 4.2

Free T4 18. 1/ 12.22

I feel so unwell, should I split the dose?

Thank you and Merry Christmas🌷🌷

I

SlowDragon profile image
SlowDragonAdministrator in reply to bubbatetley

please write a new post of your own

Rather than in this post

Regenallotment profile image
Regenallotment

sorry to hear you are going through this. I was definitely worse on 50mcg the switch to 75mcg 8 weeks later was an improvement. One bit of advice I got here was to split the dose half morning half night. That has really helped with the sweats. On dose increases I do alternate days for a week E.g. 25 - 50 -25 - 50 which also helps. When I felt sweaty skipping an increase for a day helped. Slow adjustments seems to be the answer 💚🦋💚

Zmalp profile image
Zmalp in reply to Regenallotment

thank you 🙏

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