Feel terrible on levothyroxine: Hey everyone... - Thyroid UK

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Feel terrible on levothyroxine

Mhope1989 profile image

Hey everyone, currently feel terrible and getting worse on levothyroxine, im on 200mcgs, but have no get up and go, no energy, the worst brain fog and other hypo symptoms, could anyone help me as im struggling with this I'm 32 and male. Surely im not converting well?

25 Replies

I'm in a similar boat not sleeping either all levels ok apart from T4 of 32

This was fasted and before medication? So i think the test is accurate?

Yes about that i took my dose the morning before and my test the next morning and then after the test my next test

Thanks

Well, here’s the weird thing…my bloods were good on levothyroxine. Like yours. But I had awful all over pain, brain fog and severe ‘ treatment resistant’ depression. Luckily a psychiatrist put me on 10 mcg liothyronine and it has helped enormously. Bloods still look the same but feel a lot better.

Mhope1989 profile image
Mhope1989 in reply to beh1

Wow, a head shrink put you on t3? Thats interesting! Im shocked but happy for you 😁 i know this sounds daft but i know i need t3 x

Mamapea1 profile image
Mamapea1 in reply to beh1

I'm so glad you were given the T3...a well known (perhaps becoming forgotten?) treatment for 'resistant' depression. I too suffered severe physical and mental symptoms on Levo, especially at high doses, (up to 300mcg) which I had to reduce myself, because no one would listen to my complaints of feeling 'poisoned'. I suffered for decades with 'normal' thyroid results on T4, being diagnosed with 'ME/CFS/FM, and a whole host of nefarious conditions, by a whole host of 'specialists'. I was 90% bedridden and in terrible physical pain...not one of the very long list of meds I was given helped...they actually made me worse.

I thank various Gods that I (by chance) found this forum and was given sage advice about vitamins/minerals (my results were dire, but declared 'OK' by medics) and then found the great work of Dr Lowe, and many others like our own Hugh Hamilton (HughH) and Paul Robinson, etc., because I honestly don't think I'd be around otherwise. I only managed those awful years of illness because I'm very fortunate to have lovely daughters (and 1 son) who took care of me.

Some of us just can't take Levo only, (or at all in my case) for what are probably very complicated reasons, but we're told there's 'nothing else' and continue to suffer. After learning to maintain my vitamin levels, and taking T3 only, I no longer have any of the illnesses I was dx with, don't take any other meds, and feel really well...I used to get daily migraines, and now I don't even get headaches - ever! 😳 We're all different...a fact that seems to be largely forgotten these days, sadly. I hope you continue to feel the improvement...depression is an awful, invisible thing. x

Actually, your conversion is not brilliant. Your FT4 is 106% through the range and your FT3 is 67.57%. The percentages should be closer together.

Contr-intuitive as it sounds, reducing your levo a little might improve your conversion, because less T4 would be converted to rT3, and more to T3. No guarantees, of course, but maybe worth a try.

But, don't get your GP involved at the moment, just try reducing it by yourself. Because if it doesn't work, you'd probably have trouble getting your dose increased again. :)

Mhope1989 profile image
Mhope1989 in reply to greygoose

Thats what i was thinking when diagnosed my t4 was 12 and t4 has always been high! Doctors dont care but i always felt like i have been on to much levo and its turning into reverse t3

greygoose profile image
greygoose in reply to Mhope1989

Well, you can't 'feel' rT3. rT3 itself is not the problem, it's just a safety valve for syphoning off excess T4. The problem is that if the T4 is converting to MORE rT3, it is converting LESS to T3, meaning that your FT3 is too low. Or, too low for you. But, I've never met a GP that has even heard of rT3, let alone know what it does or what to do about it.

Thats what i was thinking when diagnosed my t4 was 12 and t4 has always been high!

Think there might be a typo here, this sentence doesn't make sense. :)

Mhope1989 profile image
Mhope1989 in reply to greygoose

I have the symptoms of high reverse t3 and i meant when i was diagnosed with hypo my tsh was 50 but my t4 was in range

greygoose profile image
greygoose in reply to Mhope1989

There are no symptoms of high rT3. The symptoms people experience are from low FT3, not high rT3. rT3 is inert, and only stays in the body for a couple of hours before it is converted into T2.

It's not being 'in-range' that is important, it's where in the range the result falls. Just being 'in-range' is not the same as optimal. The ranges are too wide. And, if your FT4 was at the bottom of the range, your FT3 was probably under-range, so that would mean a high TSH.

SlowDragon profile image
SlowDragonAdministrator

Next step is to get vitamin D, folate, ferritin and B12 tested

Plus thyroid antibodies if never had thyroid antibodies tested

Low vitamin levels are extremely common with hypothyroidism. Getting all four vitamins OPTIMAL can help improve conversion of Ft4 to Ft3

What vitamin supplements are you currently taking

Have you had coeliac blood test done

Or are you already on strictly gluten free diet

Mhope1989 profile image
Mhope1989 in reply to SlowDragon

Celiac came back negative i take some iron and b12 but doc said she will testy vitamins but waiting on an appointment to get the results of these vitamins. Can vitamins really help you convert better though?

SeasideSusie profile image
SeasideSusieAdministrator in reply to Mhope1989

Mhope1989

Any iron test (iron panel or ferritin) should be done after a 12 hour fast (so early morning is ideal which means you don't have to go too long during the day without food) and you should leave off any iron supplement for 7 days beforehand.

Also, if you take a B Complex (or any supplement containing biotin) this should be left off for 3-7 days before any blood test.

SlowDragon profile image
SlowDragonAdministrator in reply to Mhope1989

So if GP tested for coeliac that suggests your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s

approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct 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

always worth trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten see if symptoms get worse.

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

Mhope1989 profile image
Mhope1989 in reply to SlowDragon

Wow thankyou appreciate this information

SeasideSusie profile image
SeasideSusieAdministrator

Mhope1989

Have you tested

Vit D

B12

Folate

Ferritin

If not I would get these done. Low nutrient levels and deficiencies can give symptoms similar to that of hypothyroidism.

Optimal nutrient levels are necessary for good conversion to take place, particularly ferritin which some experts say the optimal level for thyroid function is 90-110ug/L.

If your GP can't or wont do them all then maybe do what so many of us here do and that is a private test with either Medichecks or Blue Horizon. The cheapest way is with one of their thyroid/vitamin bundles, ie Medichecks Advanced Thyroid Function Test or Blue Horizon Thyroid Premium Gold. Discounts available, click on appropriate lab here:

thyroiduk.org/help-and-supp...

Ok will look into that

SlowDragon profile image
SlowDragonAdministrator

Approx how much do you weigh in kilo

200mcg is a fair dose. Do you always get same brand levothyroxine at each prescription…..if yes, which brand

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo of your weight

If taking a lot more than this, suggests malabsorption issues

Lactose intolerance is also extremely common with autoimmune thyroid disease, especially if gluten intolerant and not on gluten free diet

ncbi.nlm.nih.gov/pubmed/240...

Lactose intolerance was diagnosed in 75.9 % of the patients with HT

read.qxmd.com/read/24796930...

These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.

If you are lactose intolerant, you would need lactose free levothyroxine.

Teva or Aristo brands are both lactose free.

Aristo is 100mcg tablets only but often seems to be better tolerated than Teva

Mhope1989 profile image
Mhope1989 in reply to SlowDragon

Aristo makes me feel terrible unfortunately

SlowDragon profile image
SlowDragonAdministrator in reply to Mhope1989

So which brand do you prefer?

Only make one change at a time…

eg

Testing vitamins

Only supplement what’s showing as too low

Only add one supplement at a time

Or trialing strictly gluten free diet or dairy free diet

Otherwise you can’t see what’s helping

Mhope1989 profile image
Mhope1989 in reply to SlowDragon

Will try that thankyou i normally take accord

SlowDragon profile image
SlowDragonAdministrator in reply to Mhope1989

Accord also boxed as Almus via Boots or Northstar via Lloyds

But beware Northstar 25mcg is Teva

Been on Thyroid-S for just over 12 Months now after bad side effects on Levo (Euthyrox).

Just had another 3 Months on Levo (Euthyrox) to try increase FT4 from 10% thru the range to 50%

After two weeks back on Levo... it gave me constant muscle & hip pain, zero lebido, bed 7-8pm & daily headaches.

Came off yesterday with advice from my Endo. Now back on Thyroid-S only strategy again.

CONCLUSION: Levo or some brands of it... gives some people bad side affects that makes Levo a non starter as a Hypo Solution.

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