Adjusting levo based on symptoms (update) - Thyroid UK

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Adjusting levo based on symptoms (update)

ThyroidLadyLondon profile image

So I thought I would share with you my chart of what has been happening over the last couple of months with my levothyroxine intake.

(See sheet 2 in the below)

docs.google.com/spreadsheet...

As I have written here previously I am taking the levo based on my symptoms, so when I feel weak I decrease the gap between taking a 50mcg pill and when I feel "hyper" I increase the gap. It isn't all that easy of course, as "hyper" is just an indication that my body is using up the hormones at a faster pace and I may pay for it a couple of days down the road when the internal supply get a little depleted. But nevertheless, my t4 reading, at the last count was optimally within range (18), although my TSH was rather high (17).

What has been a big change for me the last two months is that I have started full time work, which has been a big change after being at home with the children for the previous five years.

For a historical perspective, I was diagnosed with hypothyroidism two and a half years ago, after the birth of second baby, but was likely symptomatic of milder hypothyroidism after the birth of my first child two years prior to that. At my lowest point, about two months after being diagnosed, my TSH was over 100 and my t4 was way under range. No one tested my t3 at the time. After I started "powering-down" at the lowest points i went on levothyroxine, starting with 50, then 75 and some day 100-125 if I still had "power-downs". I felt crap most of the time of being on levo. Fatigue and brain fog were present almost all of the time.

I started taking the approach I take now, after seeing a doctor I have written about before, who explained that we can all recover our thyroid function, particularly if recently diagnosed (as levothyroxine in the long term reduced thyroid volume and therefore output of our own t4/t3), and that recovery has much to do with reducing your body's consumption of thyroid hormones. i.e. rest, reduction of stress, keeping warm all leading to reduction of calorific expenditure, and therefore your body's use for and need to make larger quantities of t4/t3. (This is a very simplified explanation and there is a lot more nuance around the actual structural condition of your thyroid, proportion of healthy to damaged tissue, vascularisation and degree of stimulation from the autonomic nervous system.)

I gradually increased the gaps between the pills I was taking and experimented with different dosages (half of a 50 every day, half of a 75 every day, 50 every other day, etc), and now, a year and a half down the road from taking this "lifestyle change" approach, I am down to about 100-150 mcg a week on average. for the last few months I have kept a diary of how much I take and my symptoms, and I thought some of you might be interested to see what that looks like.

I am really keen to hear from people who have taken steps to wean off levo and to reduce their doses, and how you have gone about this.

Going back to work has been hard. I work in the city and commute in and out every day. I come home to two energetic kids and a household that still needs running. My time for rest has diminished and I feel the worse for it. my power-downs have come back (I will update my symptoms graph shortly - they will show an increased frequency of power downs in the first month at work).

Literally none of the doctors I have been to see have any advice about weaning off levothyroixine. So I would love to hear if anyone has found an approach for themselves.

Thank you for reading!

Genia

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18 Replies
Gerispice profile image
Gerispice

Without criticism, this is a very strange approach to managing thyroid disease. I’m of the opinion that you aren’t doing yourself any favours. Why would you put yourself through this? What are you hoping to gain from depriving your body of the hormone it needs, when it’s readily available? If you were diabetic would you not take your insulin? You need to do more research than just taking one person’s opinion, whom I can guess doesn’t have thyroid disease himself? The best of luck to you!

ThyroidLadyLondon profile image
ThyroidLadyLondon in reply to Gerispice

wow... that's a lot of criticism and presumption.

Gerispice profile image
Gerispice in reply to ThyroidLadyLondon

No, it isn’t. Is it not true that you are taking a very strange approach to treating your thyroid disease? Does the person whose advice you have taken have thyroid disease? The questions I’m asking you are questions, not criticism.

ThyroidLadyLondon profile image
ThyroidLadyLondon in reply to Gerispice

You are asking rhetorical questions. That is not asking questions, that is handing out criticism. I will pass on responding, thank you.

Gerispice profile image
Gerispice in reply to ThyroidLadyLondon

They are not rhetorical. They’re questions. If you don’t want to reply that’s your prerogative.

ThyroidLadyLondon profile image
ThyroidLadyLondon in reply to Gerispice

I might respond in similar form. Would you only go for cancer treatment to a doctor who themselves has cancer? Are you aware that a low carbohydrate diet reduces the need for insulin intake with people with type 1 diabetes AND reduces the instanced of hypoglycemia? And does it not follow that if you need less insulin to break down carbohydrates (which is the primary function of the insulin hormone), that you would need less thyroid hormones if your body's needs for energy synthesis go down? And did your doctor explain to you that long term intake of levothyroxine, particularly in higher doses will increase the likelyhood of your thyroid volume and therefore your own thyroid production decreasing? And why would you presume that I have taken into account the views of just one person, whoever you think that is?

Gerispice profile image
Gerispice in reply to ThyroidLadyLondon

Cancer is not an endocrine issue. As a healthcare professional, I am actually aware of the benefits of a low carbohydrate diet in individuals with both types of diabetes. You yourself said in your first post, “a doctor I have written about before”. I assumed that was the person who’s advice you were following. Sorry if I got that wrong. But if that is the person, he/she clearly has no understanding of the daily challenges of living with a thyroid condition. An inadequate supply of thyroid hormone at a cellular level will only cause damage to the tissues, especially your heart, which will never show a reduced need for energy synthesis. Your brain and organs require a certain level of energy to function. That is facilitated by an adequate supply of thyroid hormone. If your thyroid is still working I’m very happy for you and your unique approach may work. But in most cases, the diseased thyroid never recovers, and thinking the effective therapeutic dose can be reduced without consequence is foolish. Btw, “increase the likelihood of your thyroid volume” didn’t make sense. Did you perhaps miss part of that sentence off?

SlowDragon profile image
SlowDragonAdministrator

As your TSH was 100 you clearly have a thyroid problem

Stopping or reducing an essential replacement hormone will likely lead to reduced vitamin levels, high cholesterol and increased risk of heart disease, kidney disease and many other symptoms

webmd.com/women/features/lo...

health.harvard.edu/heart-he...

academic.oup.com/jcem/artic...

A diabetic can’t manage without insulin

A thyroid patient needs thyroid hormones

It’s extremely important to take EXACTLY the same dose over minimum of 6-8 weeks before testing thyroid levels

Recommend getting full thyroid and vitamin testing after settling on an unchanging dose of levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Assume you have hashimoto’s?

Though you could have had transient thyroid issue after pregnancy that has now resolved...but it’s rare

Ask GP to test vitamin levels, thyroid and thyroid antibodies

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last 1/2 or 1/3rd of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

ThyroidLadyLondon profile image
ThyroidLadyLondon in reply to SlowDragon

Hi SlowDragon,

I know you are an administrator here and some of the above is standard text that you provide to others here, who are looking for answers. I know it is utterly well meaning. But I am not new to thyroid disease. for the last two and a half years I have done a huge amount of research for myself and I have been to see specialists (not naturopaths or nutritionists or functional doctors, actual endoctrinologists, albeit with different views in three different countries). I have done countless blood tests for TSH, t4, t3 free and total, I have tested all my antibodies (all three of the keys ones - TSH receptor, Thyroglobulin and Peroxidase having been raised at one point or another and have fluctuated up and down). I have done a full blood panel, including vitamins and tested my iodine levels separately as well. I have had several ultrasounds of my thyroid also.

In this post I am not seeking advice for how to test my thyroid function, or how to interpret my test results. I am sharing my experience of managing my levothyroxine intake and seeking views of other people who have taken a journey of adjusting their dose downwards, and who have seen recoveries of their own thyroid function, like I have.

Hope that makes sense.

SlowDragon profile image
SlowDragonAdministrator in reply to ThyroidLadyLondon

And your previous post 5 days ago suggests you are currently Very hypothyroid with high TSH

healthunlocked.com/thyroidu...

ThyroidLadyLondon profile image
ThyroidLadyLondon in reply to SlowDragon

I do not suggest that I am hypothyroid - my t4 was within range. My TSH was elevated, but this is not an end all sign of hypothyroidism,I think you will agree.

What I was asking was what other peoples physicians advised them in similar cases.

Thank you for your opinion Scrumbler, I can see that it is well meaning. My post, however, was not about asking for opinions on the approach I am taking. As you have rightly pointed out, I have indeed made up my mind. And I have done so, based on my own research and advice which I have received, which I assure you is not trivial.

As a grown woman, who has gone through a fair few health experiences in my life, I am confident that a "conventional approach" to many treatments does not always lead to optimal health outcomes for patients, and I have learned to question absolutely everything, and to ask for second, third and fourth opinions, as well as looking at "outlier" treatments, and investigating them, sometimes using myself as a guinnea pig. There can be no progress in medicine, or any other science, if you don't question the logic of "conventional treatment".

This is part of my journey of investigating that, and I am open about it. I do not advocate it, and I do not ask for help. I am sharing to get views from others to whom this makes sense.

Type 1 and low carb diet

diabetes.co.uk/diet/low-car...

This one is on children and thyroid volumes:

paediatricaindonesiana.org/...

Again, I am not promoting anything, I am sharing myexperience. Believe me what I say that I know very well that this is not the standard approach that most people take. Hence I am very keen to hear from people for whom this makes sense, even in private, as they will likely be probed, like I am being here. Which is fair enough I guess, but again, not the purpose of this post.

can you provide reference to the research that says you have insufficient thyroid hormones when your TSH is elevated? and what does "insufficient" actually mean?

SlowDragon profile image
SlowDragonAdministrator in reply to ThyroidLadyLondon

academic.oup.com/jcem/artic...

In summary, patients on long-term T4 with either an increased serum TSH (>4 mU/liter) or a suppressed TSH (<0.03 mU/liter) have an increased risk of cardiovascular disease, dysrhythmias, and fractures when compared with patients with a TSH within the laboratory reference range. Patients with a low, but not suppressed, TSH (0.04–0.4 mU/liter) had no increased risk of these outcomes in this study.

Osteoporosis can be caused by low FT3

thyroidpatients.ca/2018/07/...

Have you had your cholesterol tested?

endocrineweb.com/news/thyro...

Gerispice profile image
Gerispice

I don’t like the tone of this interaction. I’m signing off. You obviously have an issue what I’ve pointed out. Others are in agreement with me. I’m merely stating facts and asking very relevant questions which you are taking offence at. Have a good day.

RedApple profile image
RedAppleAdministrator

Closing this thread to comments. Please PM ThyroidLadyLondon if you would like to discuss her approach with her.

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