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I'm New! Why are my symptoms worse with new dose of levothyroxine?

Gardeneranna profile image
3 Replies

Hi there, this is my first post. Feeling rather confused and despondent but it has been comforting to find this site and see there are other people in the same boat.

Would love a little advice to see if anyone has experienced what is currently happening with me.

I know that I have Hashimoto's - this was diagnosed earlier this year through seeing a private doctor (after experiencing symptoms for 9 years and the GPs telling me I was in normal range). I'm now 36 but problems started in my mid twenties. I was also really deficient in iron but have now got iron and ferritin levels back up.

Serum Iron 17.0

UIBC 42.9

Iron Binding Satn. 28.0

Ferritin 165

Have just sent away a Vit D test so waiting on those results.

Private doc started me on a combined tablet which I split in half which totals 10mg Liothyronine and 50mg of Levothyroxine. All was good - I felt better than I had in so long, until this september when my periods suddenly became irregular and old symptoms returned. I had been on a strict gluten free diet at the start of the year but got a little complacent in the summer when I felt so well. Am wondering if this triggered problems again.

Anyway, doc now upped my dose (due to results below) so I am taking an additional 25mg of Levothyroxine. So total dose 75mg Levo and 10mg Lio

Results in Oct:

TSH 4.79

Free Thyroxine 13.5

Free T3 5.8

I got these tests done privately but the test that I had only the month before through my GP in Sept TSH was 1.67.

Antibodies were 242.

Is this a big change in TSH in 1 month or is there something that can affect test results?

I have been on a real health kick this month - no gluten, dairy, sugar, booze etc. And upped my dose as explained above but now I am experiencing worse symptoms after approx a month of taking new dose.

I have really bad tinnitus, a sharp pain in my left ear, pain in my throat/neck (none of which I had before), periods still irregular and generally feel worse than I did before!

Am wondering if this is a reaction to the additional levothyroxine? Am I now taking too much? Or is it not enough?

It is so hard to get an appointment with the private doc and it always feels rushed despite paying money which is a big outlay for me, my GP said they could treat me but he could only prescribe Levothyroxine and interprets results differently to the private doc so it is all very confusing!

I suppose my question is are the new symptoms I'm experiencing familiar to anyone and could this be a result of upping my meds? Are they likely to calm down?

I will get more blood tests taken in a few weeks (which will be 6 weeks on new dose) and see where I'm at but meantime things feel worse despite trying to do everything right.

Thanks so much for any advice anyone may have.

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Gardeneranna
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Clutter profile image
Clutter

Welcome to the forum, Gardeneranna.

Hashimoto's can cause TSH to fluctuate and it is possible that reintroducing gluten has caused a flare up. You were undermedicated in October and the tinnitus and the pain in your throat and ear are almost certainly related to the undermedication. Symptoms can lag behind good biochemistry for a few weeks/months.

You should have a follow up thyroid test 6-8 weeks after increasing Levothyroxine dose. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

Gardeneranna profile image
Gardeneranna in reply to Clutter

Thank you very much for all the info Clutter. Interesting to hear symptoms probably due to undermedication and that they can lag behind the biochemistry. I will wait and see what the next bloods say. So glad I've found this forum as it can feel so isolating at times.

SlowDragon profile image
SlowDragonAdministrator

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Vitamin D, folate and B12 all need to be at good levels

See Box 1 in this link - Some possible causes of persistent symptoms in euthyroid patients on L-T4

onlinelibrary.wiley.com/doi...

See if you can get full vitamin testing from GP.

Tinnitus is often connected to low B12

Private tests are available

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

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org.

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