levothyroxine: I was diagnosed with underactive... - Thyroid UK

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levothyroxine

alansing profile image
22 Replies

I was diagnosed with underactive thyroid in April, i was initially put on 100mg of levothyroxide and dose has been increased steadily and am now on 175mg of levothyroxine, my main question is I have been getting severe joint pains a couple of weeks after taking the medication, the pains are now getting worse and effecting knees hands elbows shoulders and feet, been booked in for rheumatology appointment but was wondering if these symptom's are common or if anyone else has had any experience of this.

Please help

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alansing
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22 Replies
Debimmm profile image
Debimmm

could it be anything to do with the fillers in the pills, try requesting a different brand for 3 months. Personally I can’t tolerate TEVA so I have accord with no problems.

Hypopotamus profile image
Hypopotamus

You are not converting the T4 to T3, and your body is treating the excess thyroxine as a toxin, and storing it in your joints. You need to be put on either liothyronine (T3) or NDT (Natural Dessicated Thyroid).

If the joint pain had only occurred since you starting the thyroxine, it is very unlikely to be rheumatism.

Be warned, this is beyond the understanding of most GPs, and quite a few endos, but you will need to see an endo and discuss this with them. If you cannot get satisfaction from them, you will need to source some liothyronine or NDT yourself.

SeasideSusie profile image
SeasideSusieRemembering in reply toHypopotamus

Hypopotamus

You are not converting the T4 to T3, and your body is treating the excess thyroxine as a toxin, and storing it in your joints.

How can you possibly say that? alansing hasn't posted any test results so you have no idea how well or not he is converting. And "storing it in your joints" - please link to evidence of this. The joint pain could be a reaction to one of the fillers in the brand of Levo that he has or it could be low Vit D. Your post is unnecessarily alarmist.

Hypopotamus profile image
Hypopotamus in reply toSeasideSusie

I have suggested that alansing get an endo appointment. I don't see my reply as being any more alarmist than suggesting that he may be getting a reaction to filler.

I based my reply on my own experience. I can't find the link to storing toxins in the joints, but when I stopped taking the thyroxine my joint pain went away.

SeasideSusie profile image
SeasideSusieRemembering in reply toHypopotamus

I based my reply on my own experience.

In that case make it very clear that it is your experience as required by forum guidelines

healthunlocked.com/thyroidu...

15. Members posting on Thyroid UK must only post information which is true and correct to their knowledge. If relevant, please provide references to health or medical information.

18. If possible, show a clear distinction between personal experience or opinion and evidence-based information.

What you posted explicity stated

You are not converting the T4 to T3, and your body is treating the excess thyroxine as a toxin, and storing it in your joints.

and as I pointed out you cannot possibly know whether or not the OP is converting T4 to T3 as he has posted no results, and you have no evidence to support the statement that his body is treating excess thyroxine as a toxin and that it is being stored in joints.

I stated that the joint pain could be (not that it definitely is) reaction to a filler or low Vit D, both of which are frequently discussed on the forum.

helvella profile image
helvellaAdministrator in reply toHypopotamus

There are many possible causes of arthralgia. Including elderberry!

This case report has a certain relevance because the liver and joint issues were not caused by the levothyroxine the patient was taking!

It would have been very easy, based on your reply, to assume levothyroxine as the cause and miss elderberry. Likely causing wholly inappropriate treatment decisions.

A Plausible Association Between the Use of Elderberry and Autoimmune Hepatitis.

europepmc.org/article/MED/3...

SeasideSusie

jrbarnes profile image
jrbarnes

It's hard to say without seeing your thyroid lab panel. You could be another 12mcg away from finding the right dose or you could already be top of the range FT4 yet have bottom range FT3, which could be causing your symptoms. I tend to have pain all over when I'm not on enough thyroid hormone or not converting enough T4 to T3. I was also sent to rheumatology and their reply was "it's your thyroid." These small increases or decreases in thyroid hormone can have dramatic results. Knowing your levels can help you decide which direction to take.

SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

Joint pain common if dose levothyroxine still not correct, but also low vitamin D is extremely common too

Which brand levothyroxine are you currently taking

How long have you been on 175mcg

Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

No other medications or vitamin supplements within 2 hours

Do you have blood test results done 6-8 weeks after starting current dose levothyroxine

ALWAYS test 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)

What’s the reason for your hypothyroidism

Thyroidectomy, RAI or autoimmune thyroid disease (hashimoto’s)?

Essential to test vitamin D, folate, ferritin and B12 as well

Are you currently taking any vitamin supplements

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

Also both TPO and TG thyroid antibodies tested at least once

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

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

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)

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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

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

Jaydee1507 profile image
Jaydee1507Administrator

My joint pains were mainly related to dairy intolerance. Recommend trialling removing first dairy fromy our diet and then gluten.

Food intolerances are common in Hashimoto's.

WavingnotDrowing2023 profile image
WavingnotDrowing2023 in reply toJaydee1507

I am pleased that you said that. I wonder if bread is a common food intolerance too? I can't take in sugar or alcohol and am thinking of giving up coffee, which I love.

Jaydee1507 profile image
Jaydee1507Administrator in reply toWavingnotDrowing2023

My issues with bread related to it being a carbohydrate in the end. Members also report issues with porridge and again thats a carbohydrate issue.

I think its when we are hypo we have little systemic energy and it takes energy and blood supply to digest foods. Pre hypo of course you wouldn;t even think about that. Carbs are just a bit too heavy to digest well.

My preference for breakfast is eggs which don't seem to slow my system down. There are many ways to eat eggs and my favourite treat breakfast is banana pancakes. You can batch cook and freeze them too.

bbcgoodfood.com/recipes/ban...

WavingnotDrowing2023 profile image
WavingnotDrowing2023 in reply toJaydee1507

Thank you . Great info.

CheffyB profile image
CheffyB in reply toWavingnotDrowing2023

So great to read this reply, thank you. From a once upon a time I could eat anything, since thyroid problems carbs are very difficult for me, especially highly processed bread and porridge (which I have always loved) makes me feel sick, I have found though, gluten free oats with oat milk are better. Having said that I don’t understand as I didn’t think pats had gluten in them?

Jmb87 profile image
Jmb87 in reply toCheffyB

they don’t but they are usually made in factories where gluten is processed so can be cross contaminated. I wouldn’t recommend anyone eating a gluten free diet without being screened for coeliacs first, if you go GF before being screened it can give false results on your bloods as you need to be eating gluten for the antibodies to show in your blood tests. It’s very common for people with one autoimmune condition to develop another and unfortunately mine was coeliacs, so anyone noticing food intolerances to wheat I would highly recommend being screened by the dr first. They don’t test for it it routinely

SovietSong profile image
SovietSong

Similar symptoms to my own when overmedicated.175 is quite a high dose.

Santolina profile image
Santolina

The Underactive Thyroid: Do it yourself because your doctor won’t Paperback – January 19, 2023

by Dr. Sarah Myhill (Author), Craig Robinson (Author)

WavingnotDrowing2023 profile image
WavingnotDrowing2023 in reply toSantolina

I've heard that Sarah Myhill is very good.

Santolina profile image
Santolina in reply toWavingnotDrowing2023

after years of second guessing blood tests, adrenal issues and a whole host of issues that were exhausting me, she nailed the problem first with a leaky gut which meant I wasn't absorbing nutrients but then, got me on the right track to years of pharmaceutical disinformation. Yes, the medical profession takes advice from the manufacturers of pills - money making / cash cow at our expense. Dr Myhill's book is well worth it, gives hope and a 'kit' for getting better.

I've had experience of this - yes. I've been diagnosed as pre-diabetic and put on a wait loss programme. Have to say that going from zero to 100 mgms of Levothyroxine is a big jump. They usuallly start you on 25 and then go up from there.

carnation profile image
carnation

I had this problem a few years ago. Thought I was getting arthritis (I am getting on a bit!)

Turns out I was sensitive to one brand of levo. No issues since I swapped brands. Could be an easy trial.

HealthStarDust profile image
HealthStarDust

I can only share in my experience a full starting dose of 100mcg gave me all sorts of problem, including more joint pain (I had joint pain before medication too). For me, coming off the Levothyroxine and resuming again in 3 days which was incidentally when the first hypothyroidism symptom hit (extreme fatigue) on a lower dose solved the problem.

I think there’s so many overlaps of the issues we experience from being under medicated or over medicated and between hypothyroidism and hyperthyroidism that it’s incredibly difficult to judge what the cause could be.

Trial and error is the only way I have learned about myself and needs.

I hope you work it out.

Chrysali profile image
Chrysali

I don’t see a mention of your age. I’m 67 and was diagnosed just a few months ago. My doctor advised a starting dose of just 50mcg and I wondered at the time if it was enough. He knew best, though, because I had very severe joint and muscle pain from the very first day. My point is that, whilst I am no expert, I see the sense in taking things slowly. Levothyroxine is hard on the body. In my case, I am starting to feel much better after three months. My dose is still just 75mcg

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