Migraines on Levothyroxine : I have suffered from... - Thyroid UK

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Migraines on Levothyroxine

Shazy-B profile image
15 Replies

I have suffered from migraines for over 30 years usually one ever couple of months but I’ve had 2 within 6 days! My TSH was 0.25 so my GP recommended lowering my Levo to 75mcg from 100mcg daily which I did for a few weeks but I felt dreadful and my TSH went back up to 2.4 so I decided to up my dose back up to 100mcg a couple of weeks ago and I’m wondering if this could be the cause of the increase in migraines? My usual brand of Actavis has recently changed names to Accord and I’m also wondering if the formulation may have changed. I always stick with the same brand and have done for over 8 years now as I found it worked well for me, but things don’t seem the same since the name change.

Any advice would be most welcome, as I am quite worried as I have had to take time off work twice within a week!

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Shazy-B profile image
Shazy-B
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15 Replies
SlowDragon profile image
SlowDragonAdministrator

Accord and Activis are (in theory) exactly the same tablets ....just rebranded.

But several members are convinced they are different

What vitamin supplements are you currently taking

Bloods should be retested 6-8 weeks after any dose or brand change in 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

Ask GP to test vitamin levels

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)

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Shazy-B profile image
Shazy-B in reply toSlowDragon

Thanks for your reply SlowDragon.

I’m not currently taking any vitamin supplements, I had them checked a couple of months ago as I had low folate at the beginning of the year. They all came back “normal” I am currently on a transdermal HRT (patch) 25mg changed twice weekly as I had a hysterectomy 20 years ago.

I have also been experiencing heightened anxiety for the past few weeks, something I have had for approximately 10 years but once I had my medications right it was definitely more controlled and not as prevalent.

I have asked for my T3 to be checked but of course my request was declined, my GP said the labs won’t test because they see no need as my TSH is within range!

I always miss my morning dose before having bloods drawn then take a delayed dose.

I think my only option is to get a full Thyroid panel private test and maybe ask for an Endo referral.

Migraines are so debilitating not to mention painful and interfere with my life so much, it gets me down.

SlowDragon profile image
SlowDragonAdministrator in reply toShazy-B

GP will only look at vitamin test results for deficiencies

Folate at least half way through range

B12 range is typically 180-680

GP would say result of 185 or 620 was “normal”

On levothyroxine we frequently need vitamin B12 over 500 and certainly over 300

Vitamin D GP only obligated to treat if under 50nmol. We. Need vitamin D Around 80nmol and around 100nmol maybe better

Always get actual results and ranges

Ferritin at least half way through range

Shazy-B profile image
Shazy-B in reply toSlowDragon

My GP has requested more bloods today as I have increased back to 100mcg of levothyroxine, including TPOAB she can’t request B12/Folate as there is currently as shortage!

These were my results back in July:

Serum TSH 2.1 (0.30-6.00) on 75mcg levothyroxine

Vit D2 7nmol

Vit D3 83nmol

Combined total D2 + D3 90 nmol (>75nmol)

B12/Folate

Serum B12 496ng (200-770ng/L)

Serum folate 10 ug/L (3.90-26.80ug/L) after 4 months of taking folic acid as previous result was 2ug/L

SlowDragon profile image
SlowDragonAdministrator in reply toShazy-B

Yes there’s world shortage on reagent to test folate

SlowDragon profile image
SlowDragonAdministrator

Important all four vitamins are OPTIMAL

As you have Hashimoto’s are you on Strictly gluten free diet?

Or tried dairy free

yourmigrainedoctor.com/2016...

Shazy-B profile image
Shazy-B in reply toSlowDragon

I actually don’t know whether I do have Hashimoto’s or if it’s autoimmune acquired as my GP can’t find my antibody test results from years ago when I was initially diagnosed. Would it be worth asking for another antibody test, will they still show at this stage?

I do feel myself it is Hashimoto’s as I definitely have swings.

SlowDragon profile image
SlowDragonAdministrator in reply toShazy-B

Previous post shows you have Hashimoto’s

helvella profile image
helvellaAdministrator

I have had a number of migraines since being diagnosed hypothyroid (around ten years).

They have all been visual migraines - with only a little bit of nausea, feeling a bit wiped out, etc. and no pain.

At one point I had a series of very minor migraines. More recently, two very significant ones. But I have never identified any factor which triggers them - like change of levothyroxine. Not even change of pack/batch! Not time of day.

Pre-hypothyroidism, I did have the very occasional migraine, including (many years ago) ones with headache. Since, I have had many more. For that reason, I do associate them with hypothyroidism and/or levothyroxine but without any understanding as to the nature of that connection.

knitwitty profile image
knitwitty in reply tohelvella

I too have had visual migraines , sometimes followed by a headache. They begin with a blind spot followed by zig zags that radiate out until they go out of my field of vision. They usually last about 30 minutes from the start of the blind spot appearing.

I seem to get them more if I am really stressed about something and I did wonder at one point if they were associated with a change in dosage of levothyroxine.

I went to my optician when I first got them but he said my eyesight was not causing them and that it was associated with the brain.

I am no wiser as to why I get them but it's reassuring to know that I'm not the only sufferer.

helvella profile image
helvellaAdministrator in reply toknitwitty

Your description is close to what I get.

Not much fun, but quite bearable.

knitwitty profile image
knitwitty in reply tohelvella

Agreed , not much fun, but I don't think they can be anything too serious otherwise I'd not be here , I've been getting them on and off for a few years now. :)

Shazy-B profile image
Shazy-B in reply tohelvella

Mine are definitely becoming unbearable, over the past five weeks I’ve had five migraine attacks three of which were over a seven day period...I’m at my wits end with them now 😢 I’m convinced it’s since my Levo brand has changed names Accord formerly Actavis....it’s seems too coincidental that my migraines have increased since I got my last prescription that are now Accord. I’ve emailed them today asking if the formulation has changed and a list of the ingredients of both. I just need to find an answer now, it’s impacting on my day to day life not to mention my job, I’m so fed up.

Shazy-B profile image
Shazy-B

I have always suffered with them (since the age of 16) I was only diagnosed Hypothyroid at age 32, 12 months after having a hysterectomy which I truly believe cause me to go hypo. When I was younger I attributed my migraines to hormones as they would occur either during pregnancy (severely) or at my time of the month.

As I currently have no fluctuation with my hormones as I don’t have a monthly cycle anymore I’m at a loss as to know what triggers them. They literally come like a bolt out of the blue for no apparent reason!

knitwitty profile image
knitwitty

It seems like we are all slaves to our hormones one way or another !:(

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