Severe Headaches since starting levothyroxine - Thyroid UK

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Severe Headaches since starting levothyroxine

MaxSolway profile image
38 Replies

Hi everyone, I cannot tell you how relieved I am to have found this forum as I have felt like I have been loosing my mind. I had my baby 10 months ago and was diagnosed with a low thyroid about six weeks ago (the reason I called the doctors is because I kept on getting pins and needles in arms at night then my head)

I was put on 50mcg of levothyroxine and felt great for about 2 weeks and since then have felt progressively worse, a dull one sided headache for about a week and now I have searing pain at the back of my head which hurts even to touch, have also been getting daily bouts of pins and needles all over my body as well as feeling very wobbly. Yesterday and today I finally cracked and had two anxiety attacks (which I haven’t had for years) thankfully though they have led me to finding here! If anyone has any advice or has had similar experiences I would be so grateful to hear from you!

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MaxSolway profile image
MaxSolway
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38 Replies
greygoose profile image
greygoose

You're probably under-medicated. 50 mcg is only a starter dose and should be increased to 75 mcg when you retest at six weeks. When are you due your retest? If the GP hasn't said, get onto him/her immediately and as for one. :)

MaxSolway profile image
MaxSolway in reply togreygoose

Thank you for responding :) I’m due to re-test on Monday, so hopefully will be prescribed a higher dose then, I can’t believe how painful this head burning is!

greygoose profile image
greygoose in reply toMaxSolway

Are they just testing thyroid? Because the pins and needles suggest low B12.

It's very important to get the basic nutrients tested: vit d, vit B12, folate, ferritin. Because hypos usually have a lot of nutritional deficiencies, which cause more symptoms. So, ask if they can be done, as well. :)

greygoose profile image
greygoose in reply togreygoose

When you get the results - always ask for a print-out of your results, and don't just accept opinions like 'fine', or 'acceptable', they mean nothing. You need the actual numbers - results and ranges. Then, you can post them on here and people can help you to understand them.

Ask the receptionist, not the doctor! :)

MaxSolway profile image
MaxSolway in reply togreygoose

I’m just about to see them and will ask for nutrient blood work - thank you so much, never even thought it could be to do with B12 deficiency. I’ve been borderline anaemic for years and years so I wonder if that’s got anything to do with it too. Will post back once results are done.

greygoose profile image
greygoose in reply toMaxSolway

OK Good luck! :)

MaxSolway profile image
MaxSolway in reply togreygoose

Thank you 😊 blood work on Monday so will post and let you know. Being sent for an ultrasound on neck as a lymph node on my jawline is slightly swollen, and an MRI on back (my neck and shoulders and beyond stiff) I think I might have to pay for nutrient tests as my doctor was v reluctant to test for those and didn’t see how they could be related - it seems crazy there seems to be so little they understand about hypothyroidism!

Lulu2607 profile image
Lulu2607 in reply toMaxSolway

Hi. Your symptoms do sound like anaemia and if you've been borderline anaemic in the past the effects of childbirth may have made it worse so I agree with others that you should ask for it to be checked. Also, low stomach acid which is common in hypothyroidism also means the nutrients in food are often not absorbed efficiently which makes matters worse. I hope you feel better soon as coping with a baby is exhausting enough without worrisome symptoms.

MaxSolway profile image
MaxSolway in reply toLulu2607

I think I might have to pay for private testing as my doctor seems pretty reluctant to run anymore nutrient deficiency tests on me. My last one six weeks ago said my iron was low, so I can only presume that that is definitely part of the problem, I will get a good iron supplement online and hope that it starts to improve my energy levels.

SlowDragon profile image
SlowDragonAdministrator in reply toMaxSolway

Make sure you test early morning, ideally before 9am and last dose Levothyroxine 24 hours before test

Which brand Levothyroxine are you currently taking

ESSENTIAL to test vitamin D, folate, ferritin and B12 levels too plus thyroid antibodies if not been tested yet

Come back with new post once you get results

MaxSolway profile image
MaxSolway in reply toSlowDragon

Thank you 😊 I booked my blood work for midday so will change that now ! I’m not sure what brand I’m on (that’s terrible isn’t it!) will post back once I’ve looked at the packaging.

SarahJane1471 profile image
SarahJane1471

Sorry you are feeling so bad. It must be difficult when also looking after a baby. This is a lovely supportive forum which has very knowledgeable people who will guide you through this.It will seem like information overload at first but keep reading and taking the advice …….. it’s worked for me 😀

MaxSolway profile image
MaxSolway in reply toSarahJane1471

Thank you 😊 I already feel miles better knowing that I’m not alone and it’s not all in my head!

AmberBee profile image
AmberBee

So sorry to hear, I realised after 10 years that most thyroid treatments cause terrible migraines headaches, found erfa a nature throid medication last year by accident that helps my migraines , still have them but not as bad

MaxSolway profile image
MaxSolway in reply toAmberBee

I’ve never had a migraine in my life so having them daily has really been quite a nasty shock! I will have a look for erfa and see if it makes a difference, thank you 😊

AmberBee profile image
AmberBee in reply toMaxSolway

It is much more complex, there can be many other solutions but levothyroxine and leothyroxine are hopeless in my case, other nature throids did not work as well in my case. Hope you find solutions, not pleasant having regular migraines

Mrhd profile image
Mrhd

This is exactly where I was at several years ago. Do not fear! It is possible to feel human again. For me, I needed to improve my D3 and iron levels but the biggest difference was switching to a t3/t4 combo. About 24 hours after my first tablet I started to improve. It may not be the same for everyone but the threads here will give you lots of things to try and advice about how to get them from your gp. Chin up! You are in the right place 😊

MaxSolway profile image
MaxSolway in reply toMrhd

I didn’t even know that you could combine the pills you were taking, this really is a whole new world! My doctor just said take this pill and you’ll feel better, never any mention of all the side effects and how one size doesn’t fit all. It’s so relieving to hear that it can and will get better! Thank you 😊

Kimkat profile image
Kimkat

I would get it checked out with your GP first just to be sure but it may be the make that you are taking. I am only happy on Mercury Pharma, any other make gives me 24/7 headaches, especially Teva. Ask for a different one it could make all the difference

MaxSolway profile image
MaxSolway in reply toKimkat

I’m on the Mercury Pharma, I think it might be that the dose is too low as I’ve only just started, but my goodness I’ve never felt so out of sorts in my life!

Kimkat profile image
Kimkat in reply toMaxSolway

Yes you’re probably right, I hope you have a sympathetic GP.

SlowDragon profile image
SlowDragonAdministrator

First thing is, do you have any actual blood test results from BEFORE starting on levothyroxine

if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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 frequently starts after pregnancy

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 (Hashimoto’s or Ord’s thyroiditis)

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 on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

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

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...

Important to know which brand of levothyroxine you are taking

Teva brand upsets many people

Teva is only brand that makes 75mcg tablets

So if avoiding Teva will need to have 50mcg and 25mcg tablets

Or cut 50mcg tablets in half to get 25mcg

MaxSolway profile image
MaxSolway in reply toSlowDragon

Thank you so much for all of this information, it really is so helpful, I’m so grateful! I’ve just checked and I’m on Mercury Pharma. I saw my doctor yesterday and he basically said they wouldn’t test for nutrient deficiencies as he doesn’t think that’s what is causing my troubles (though I am starting to think more and more that it is!) He is sending me for a ultrasound sound of my neck and an mri of my back as I have a swollen lymph node along my jaw line, from what I read this could be because of antibodies though…I will ask for printed copies of my previous blood results and the next round on Monday and post on here. Thank you again, I am so relieved to have found this forum!

SlowDragon profile image
SlowDragonAdministrator in reply toMaxSolway

Mercury Pharma brand makes 25mcg, 50mcg and 100mcg tablets

Eltroxin is also identical

Both are often listed as Advanz (company name) on pharmacy database

Low vitamin levels are extremely common with hypothyroidism due to low stomach acid leading to poor nutrient absorption(regardless of how good your diet is)

Many GP’s are unaware of gut and thyroid connection

Test vitamin levels at least once a year, more frequently if levels are low and working on improving

MaxSolway profile image
MaxSolway in reply toSlowDragon

Will definitely sort out a private vitamin level test as I’m sure this could be on or the problems. I have non corosive gastritis too, so I’m pretty sure my digestive system is quick sluggish because of this.

SlowDragon profile image
SlowDragonAdministrator in reply toMaxSolway

Only do private testing early Monday or Tuesday mornings, ideally before 9am and last dose levothyroxine 24 hours before test

Test minimum 6-8 weeks after any dose increase or brand change in levothyroxine

Don’t test in heatwave as risks blood being no good by time gets to lab

MaxSolway profile image
MaxSolway in reply toSlowDragon

Do you have any recommendations for private nutrient testing? Do home kits suffice? Also, any suggestions for where to find a decent endocrinologist would be most appreciated!

SlowDragon profile image
SlowDragonAdministrator in reply toMaxSolway

Links I gave you for Medichecks and Blue horizon include vitamin D, folate, ferritin and B12 testing

Only do private testing early Monday or Tuesday morning, ideally before 9am and last dose levothyroxine 24 hours before test

Don’t test in heatwave

50mcg is only standard STARTER dose levothyroxine

Unless extremely petite likely to need at least 2 further increases in levothyroxine of 25mcg each time

Typically eventual dose is approx 1.6mcg levothyroxine per kilo of your weight per day

We can’t rush it

Typically takes 6-12 months to get up to full dose and fine tune levels

Get full thyroid and vitamin testing done before considering booking any consultation

If vitamins are low, these ideally need improving first

Roughly where in U.K. are you

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

MaxSolway profile image
MaxSolway in reply toSlowDragon

Thank you so much, this is all so helpful.

I got my results text to me this evening and apparently I have hashimoto’s but they didn’t specify anything else.

I will ask my doctor for a follow up and a print out of the actual test results as they gave me no further information. They also said that my thyroid levels are back to normal so they’ll keep me on 50mcg, which doesn’t feel right as I still feel awful!

SlowDragon profile image
SlowDragonAdministrator in reply toMaxSolway

They also said that my thyroid levels are back to normal so they’ll keep me on 50mcg, which doesn’t feel right as I still feel awful!

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

What were actual results?

Make an appointment with GP and request 25mcg dose increase up to 75mcg

Bloods retested again in another 6-8 weeks

Meanwhile request GP test vitamin levels

Approx how much do you weigh in kilo?

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

MaxSolway profile image
MaxSolway in reply toSlowDragon

I did my test at midday as they had no early ones, and I’d taken my last dose I would say around 28 hours earlier.

I haven’t got the printed results yet but am picking them up next week, I will post on here once I have them.

I am afraid I have no idea what level I was at when then first tested me or now, so I’m keen to have a proper look at them and try and make sense of it all!

I am 60kg and quite petite, I used to be 50kg, but have put on weight since having my baby, and I guess it’s been harder to shift because of my thyroid issues.

SlowDragon profile image
SlowDragonAdministrator in reply toMaxSolway

I am afraid I have no idea what level I was at when then first tested me or now,

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine….always book early appointment, ideally before 9am and last dose levothyroxine 24 hours before test

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum….especially with Hashimoto’s

NHS guidelines are clear GP should test vitamin levels and do coeliac blood test (if you’re not already on strictly gluten free diet)

Guidelines on dose levothyroxine by your weight suggests you will perhaps eventually be on around 96mcg per day

60 x 1.6 = 96

96 x 7 = 672 per week

So you might need 100mcg 6 days a week and 75mcg once a week

But some people need a bit more ….some a bit less

50mcg is only a starter dose. Push for next increase to 75mcg per day. (Even if you initially only take 62.5mcg per day for first 6 weeks)

Mercury Pharma make 25mcg, 50mcg and 100mcg

So get 25mcg tablets added to your prescription

MaxSolway profile image
MaxSolway in reply toSlowDragon

Have requested an appointment with my doctor to up my dose. From looking on other posts here I see it is quite common to feel worse once starting the medication if you’re not at the right dose, so hoping it will help.

My original blood results on the 6th of June were TSH level - 17.80 and T4 Level - 8.2

This weeks test results were TSH level - 2.68 and T4 level - 13.3, so much more within a normal range but I still feel awful! My antibody test was 464 IU/ML ! My doctors don’t seem to test for T3 so I think I will have to find a private endocrinologist

SlowDragon profile image
SlowDragonAdministrator in reply toMaxSolway

With TSH over 2 you should have 25mcg dose increase in levothyroxine

What’s the range on Ft4 results

Aiming for Ft4 at least 60-70% through range

Make sure to get Mercury Pharma 25mcg tablets to add to your 50mcg ones

Don’t change brand while increasing dose

No point testing Ft3 at moment

You might consider testing TSH, Ft4 and Ft3 after 6-8 weeks on 75mcg dose levothyroxine

You do need to test vitamin levels

Perhaps just test Vitamin D now

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Then after 8 weeks on 75mcg levothyroxine, considering getting Medichecks or Blue horizon test that includes testing folate, ferritin and B12 (and vitamin D)

SlowDragon profile image
SlowDragonAdministrator

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...

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

SlowDragon profile image
SlowDragonAdministrator

Brands of levothyroxine

Teva contains mannitol as a filler, which seems to be possible cause of problems.

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, Glenmark or Aristo (100mcg only) are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

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

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

Goldengirl69 profile image
Goldengirl69

Hi Maxsoloway , I'm sure I'm reacting very severe to Levothyroxine 75mg . What the he'll is this medicine ? Severe body aches, bad heart, severe ear aches and headaches, foggy head , more like dementia. Swollen stomach. Diareer . Will be getting of this . Hope u get it sorted , get of it to.

Goldengirl69 profile image
Goldengirl69

Hi Maxsolway, yes I'm on levothyroxine. And I also thought I'm going crazy for years . I thought is thos Thyroid or levo. I've been get severe headaches, severe stomach aches , hives, swollen throat. List goes on and on. Now I keep jumping on and off it . As I'm sick of it , in throes , of thinking how am I going to get off this . Whether it , brand I'm react to or levo itself. And if brand , will be nightmare to get another. But hey need try with Chemists. I hope your doing OK and. Ur problems have gone.

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