Stopped levothyroxine

[hippyjane]

I’ve been taking levothyroxine for about 19 years reluctantly. I stopped taking them as wanted to take something more natural. After 1 month I felt really good and realised the side effects from the medication was crippling me, doctors putting it down to fibromyalgia. But found I could walk further, no pain in my legs and better mobility. But the last month am having problems. Face and eyes puffed up, restricted breathing and talking as my voice box is very restrained, bad snoring, etc. Tried seaweed but no difference and getting worse symptoms, been advised it makes hypothyroidism worse. Has anyone got any advice on natural remedies/treatments as I don’t want to go back on levothyroxine?

[helvella Administrator]

I rarely consider desiccated thyroid as "natural" as there are multiple steps in processing and several excipients added. However, some people do indeed do better on it than levothyroxine, liothyronine or any combination. Some people don't get on with it.

It tends to be fairly expensive. Getting a prescription pretty much necessitates a private doctor willing to prescribe. Or taking full control yourself.

Your story is, sadly, familiar. We have had a number of members who quit levothyroxine and felt better. Sometimes for days, sometimes a bit longer. But without adequate thyroid hormone from somewhere, they will inevitably suffer and become progressively more hypothyroid.

(Exceptions have occurred such as when someone really did not need it in the first place.)

Taking iodine (which is what seaweed provides) most definitely can worsen your situation. But that subject is complex.

There is no hint of any thyroid tests in your post. But in your situation you could be heading towards the dangerous territory of myxoedema coma which is a medical emergency.

In my view, getting up to date blood tests is currently urgent and essential.

Some people find that the relatively simple approach of changing make of levothyroxine makes a considerable difference.

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).

Direct link to PDF:

📄 dropbox.com/scl/fi/gx6dmz5i...

Blog last updated 28/12/2024 - documents are regularly updated

Link to blog:

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

[Jaydee1507 Administrator]

You havent posted much in the past. Can you share with us your most recent blood results? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

There are a number of reasons that someone might not recover on Levothyroxine, including needing a different brand, not enough Levo, not converting, needing some T3 added, vitamin levels too low

Quite a number of members have tried stopping Levo in desperation and experienced similar to yourself in feeling better initially before worse symptoms settling in. It looks like you do need thyroid treatment and there is no alternative other than thyroid hormones.

You might benefit from combination treatment - Levo +T3, or NDT which is expensive and really only available privately.

Suggest you get your thyroid and vitamin levels tested and make a new post for suggestions once you have the results.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

[RedApple Administrator]

'Has anyone got any advice on natural remedies/treatments as I don’t want to go back on levothyroxine?'

Hippyjane, Levothyroxine is a thyroid hormone. Thyroid hormone is essential for life and cannot be substituted with 'alternative or natural' treatments. If you've not taken any thyroid hormone at all for two months, you are heading towards being 'severely hypothyroid'.

Even though you didn't feel great on it, it was keeping you alive. Without it, your body and brain will gradually start shutting down. Please start taking your levothyroxine again, right away. This will at least stave off the worst possible scenario whilst you investigate other possible thyroid hormone replacement medications and doses.

If you have any thyroid blood test details from before you stopped levothyroxine, please post them here so that we can get some idea of what was going on at that point.

[RedApple Administrator in reply to RedApple]

Do you still have some levothyroxine? What dose were you on? It may be that the dose was wrong for you. Or that the brand of tablets didn't suit you.

The more information you can give us, the more chance we may be able to help.

[hippyjane in reply to RedApple]

yes still got some. I think I was on the right dose as I was okay on them. Just sick of taking pharmaceutical drugs which cause more side effects. I eat only organic foods and drink and don’t even take paracetamol for headache. Just would rather take the natural route with anything. Also don’t want to rely on prescription drugs as maybe soon we won’t be able to get them when all hell breaks loose. Thank you anyway

[RedApple Administrator in reply to hippyjane]

'sick of taking pharmaceutical drugs which cause more side effects.'

Thyroid Hormones (i.e. levothyroxine, liothyronine) are not pharmaceutical drugs in that sense. Yes, they are manufactured by pharmaceutical companies, but so are the HRTs (oestrogen, progesterone, testosterone) that so many women rely on when their bodies stop making them.

'would rather take the natural route with anything'

You are not alone by any means. But the only 'natural' thyroid hormone is that which is made by a working thyroid gland in the neck. Those of us, like yourself, that don't have a functioning thyroid gland, have to rely on 'prescription' thyroid hormone replacements. There is no way around this. Even the so called 'NDT' (natural desiccated thyroid) is made by pharmaceutical companies and needs a prescription.

' don’t want to rely on prescription drugs'

When it comes to replacement hormones, you don't have any choice. (Other than to purchase them yourself from overseas without prescription).

[Jazzw in reply to hippyjane]

The thing is, paracetamol and levothyroxine aren’t exactly in the same league.

No one has a paracetamol deficiency. It’s not like that’s something that a gland in the body would normally produce in order to prevent you from feeling pain.

But levothyroxine is about as near as you can get to reproducing the T4 hormones that your ailing thyroid can’t make any more.

There isn’t a natural alternative to levothyroxine - natural dedicated thyroid could maybe be considered to be more “natural” but it has to go through a lot of processing.

If levothyroxine hasn’t been working for you, the chances are you haven’t been on enough because you’ve had a doctor who doesn’t understand how to optimise your dosage or you’ve needed some liothyronine (T3) to go along with it.

If you are chronically undermedicated for hypothyroidism you’ll have poor gut function as a byproduct. Which is will mean you’re likely deficient in B vitamins, Vit D, ferritin—all sorts of things—as well as being hypothyroid. It can leave you feeling terrible.

There isn’t a “natural” solution to hypothyroidism, sorry. Anyone who says otherwise is usually trying to peddle expensive supplements.

[SlowDragon Administrator]

How much levothyroxine were you taking

Which brand of

What were your last set of thyroid and vitamin results

It’s extremely common to initially feel better stopping Levo or on less levothyroxine……lower Ft4 (levothyroxine in blood) results in better conversion to Ft3

But pretty quickly you run out of any Ft4 to convert and will be become increasingly hypothyroid

VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

Like a diabetic needs insulin…..a thyroid patient needs replacement thyroid hormones

Strongly recommend you get FULL thyroid and vitamin testing urgently…..within a week or two maximum

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and especially when hypo

Very likely vitamin levels will also reduce significantly when stop levothyroxine

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

Exactly what vitamin supplements are you taking

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

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...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

How much do you weigh in kilo

Going forward

Back on levothyroxine

Pay attention to brand of levothyroxine. Work out which brand suits you best and insist on that brand at each prescription

Once you eventually get on correct and fine tuned dose levothyroxine to bring Ft4 up to approx 70% through range and maintain GOOD levels of vitamin D, folate, ferritin and B12……..

if Ft3 remains significantly lower than Ft4 you may need SMALL dose of T3 prescribed alongside Levo

It’s likely to take several months to recover from stopping Levo

You might find my profile helpful

I stopped levothyroxine on 3 separate occasions early on when left on inadequate dose levothyroxine. 1st time mildly unwell. 2nd time approx year later very unwell. And 3rd and final time…..(never did it again) as scarily unwell, took roughly a year to regain enough strength to walk 500 meters unaided

[Notfeelinggr8]

hi HippyJane, Sorry to hear that you are feeling so unwell. I agree with the advice already given. You must get tested for your thyroid function FT3, Ft4 & TSH but also that you need to have patience and persevere. I became hypothyroid when half of my thyroid was removed during a parathyroidectomy so never had to struggle for a diagnosis. I was started on a very low dose of thyroxine which did little for my total exhaustion and digestion issues but I slowly had my Levi increased to 50 mg, then 75 mg and felt slightly better. The thing that made the greatest difference to me was improving my diet (subscribed to the Zoe project) and started supplementing (I know not natural but I felt so exhausted I would do anything and started taking vitamins D, but B and folate regularly. But, I think that the thing that made the most difference was going gluten free and lactose free. Within a couple of weeks I felt so much better. I have now been gluten and lactose free for 3 years and asked my GP to put my Levi prescription up to 100mg and now feel very good. I sleep well, have the energy to walk every day and life is good. My advice is to try dropping gluten and lactose for a few weeks and see if that helps, get regular exercise, enjoy friends and family and be willing to be flexible in your thinking about prescription drugs. I understand how you feel about ‘pills’, I too am shocked by people who pop paracetamol, antidepressants and antibiotics as if they were sweets but sometimes they are necessary if we want to feel better.

[Annajames]

Hello hippyjane,

I’m sorry to hear you are feeling unwell. I totally understand where you are coming from by wanting to be prescription free. I too stopped taking my levothyroxine many years ago after being on it for a year. I ended up extremely ill, unable to even get out of my bed, and had to go back on it after a month. I was even left with huge purple stretch marks all down the front of my thighs as a reminder of my error in judgment! Who knew going full hypothyroid could do such a thing! The thyroid does affect even organ and hormone in our bodies so in retrospect suddenly turning it off was bound to have a lot of bad effects.

I don’t do prescription drugs if I can help it either and I will only take paracetamol if absolutely necessary but the way I saw it was, even IF I could find a natural replacement for levothyroxine I would still have to take it every day AND I would have to find natural replacements to fix all the other hormone imbalances and countless symptoms that stopping levothyroxine would cause. So I chose the lesser of many evils and have taken levothyroxine for 23 years.

Over those 23 years I have had my dose slowly increased as I got better and became more active and started working in a physically demanding job. I have also pinpointed the best brand for me after trial and error on other brands. Some brands caused severe joint and muscle pain, another severe migraines, and one even gave me horrendous indigestion! The one I am on is great and I honestly couldn’t say it causes any side effects. There are several other brands I could try but why risk spoiling a good thing?

I too do worry about what might happen to supplies in the future but we’ll have to wait and see, until then I will live for today and make sure every day now is the best it can be 🩷