Levothyroxine with migraine

[nk655chii]

I had thyroidectomy 10years ago. I have been on 50mg levothyroxine. my tsh, t3 and t4 are normal. in the last 6months , I have migraine as soon as I take levothyroxine before or after breakfast. pls advise alternative medication. my doctor advise has not helped.

[pennyannie]

Hello nk655chii

Can you please post the TSH, T3 and T4 results that you mention, along with any vitamin and minerals blood tests that you may have had tested recently.

Currently, Levothyroxine is the only readily available medication on the NHS.

There are alternatives and additions to Levothyroxine but obtaining them on the NHS virtually impossible.

If you have further information to share we can answer your question more thoroughly.

Just as a point of reference a fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. and personally if I were on only 50 T4 I would be very unwell.

I'm with Graves Disease post RAI thyroid ablation some 15 years ago and now self mediating and buying my own full spectrum thyroid hormone replacement.

[Jazzw]

I think there’s a close to zero chance that 50mcg of levothyroxine is enough. Certainly not for someone who’s had a thyroidectomy. I can only imagine that your doctor is someone who doesn’t know that “in the laboratory reference range” doesn’t mean “optimal” or anything even close to it.

The migraines will be a consequence of being undermedicated. You’ve been undermedicated so long it’s likely your levels of Vit B12, folate, ferritin and Vit D are also in your boots (unless you supplement any of those?).

As Penny has said, could you post some blood test results? If you don’t know them, go to your doctor and ask the receptionist to print the latest ones off for you (you have a right to see them).

[nk655chii in reply to Jazzw]

Hello , Thanks every one who responded to my mail on my consistent migraine with 50mcg Levo - thyrodectomy and my TSH was 6.5. After receiving unanimous decision that I was undermedicated, In the last 21 days I increased my Levo to 100mcg. My test result today is TSH - 1.32 ( 0.380 - 5.330), my Free T3 - 4.42 ( 3.6- 6.0) and my Free T4 - 12.37 ( 7.2 - 16.4)

pls I need your advise on dosage of Levo to keep me at optimal level.. i feel better now and my migraine almost gone. I also had my vitamins tested. I hope to forward same when the lab result is out.

[pennyannie in reply to nk655chii]

Hey there again

Very few people will see your current post tucked in here -

It will be easier, if you start a new post giving a brief history, together with these results and ranges, alongside the vitamins and minerals that you are currently waiting on thereby giving complete information enabling considered opinion from the Admins.

Glad the headaches have taken a hike !!

[SlowDragon Administrator]

50mcg is an EXTREMELY small dose for someone with no thyroid

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, if been under treated

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, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

For thyroid including antibodies and vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Can you add any results you have

Or come back with new post once you get results and ranges

Typically we need 1.6mcg levothyroxine per kilo of your weight

If been under treated dose of levothyroxine has to be increased very slowly. In 25mcg steps....retesting 6-8 weeks after each dose increase

New NICE guidelines

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ clear on dose required

bmj.com/content/368/bmj.m41

Post re full starting dose

healthunlocked.com/thyroidu....

[shaws Administrator]

Welcome to our forum and I am shocked that your dose - after having your thyroid gland removed - is a 'starting' dose i.e. 50mcg after 10 years.

Unless someone is very frail with a heart disease, we should have increases of 25mcg about every six weeks until our TSH is 1 or lower with a Free T4 and Free T3 in the upper part of the ranges.

You are yet one more patient whose doctor seems to have a very basic knowledge of how to treat patients. Practically nearly all of the doctors in the UK (unless they are well past retirement age) don't seem to have any knowledge of how to return the patient to good health.

Blood draw should be at the earliest possible and fasting (you can drink water).

If you can afford a Private Blood Test (this is a home finger pin-prick test) and also make sure you're well hydrated before blood is drawn. There should also be a 24 hour gap between last dose of levo and test and take it afterwards.

The following advice is very important:

You should be well-hydrated a couple of days before Blood draw and it should be at the very earliest possible, fasting (you can drink water) and wait an hour before eating.

A 24 hour gap should elapse between last dose and test and take it afterwards. GPs don't have very much knowledge it seems except to keep the TSH (thyroid stimulating hormone - which is from the pituitary gland) within the range

A 'Full Thyroid Blood Test' consists of T3, T4, Free T4, Free T3 and thyroid antibodies. These are details of home blood tests:-

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

I have my thyroid gland but couldn't recover on levothyroxine (T4) which has to convert to T3.

T4 (levothyroxine) is an inactive hormone and T3 is the Active Thyroid Hormone needed in our millions of T3 receptor cells and heart and brain has the most.

Your GP should also test B12, Vit D, iron, ferritin and folate.

We have to take our health into our own hands, particularly if you're not improving symptomatically.

Always get a print-out of your results, with the ranges (ranges are important as labs differ in their machines therefore ranges might be slightly different). Post them if you have a query.

I'd get a test before you change your make/dose of levothyroxine which you can do after your results are posted and vitamins/minerals should also be tested. i.e. B12, Vit D, iron, ferritin and folate.

Sometimes we have to try a few makes of levo before we get one that improves our health.

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

You might prefer taking your dose at bedtime - in that case stomach has to be empty . If having a blood test next a.m. you can miss this dose and take after test and at night on the same day.

[pennyannie]

Hello JaneyJaney

Thank you of your comments, but I did write that it was an approximation of the thyroid's daily output of T3 and T4 :

I fully accept that we are all different but think it's important for people to have some idea of the amount of thyroid hormone production that they may have ' lost ' through either a thyroidectomy or thyroid ablation.

I'm now on Natural Desiccated Thyroid and the breakdown that works well for me now is :- 57 T4 + 13.50 T3 :

I also now of people on synthetic thyroid hormone replacement on 88/15 and another on 100/12.50 and another one 75/12.50 - it's not an exact science I fully accept that.

What might help us all would be to have a T3 and T4 blood test when well.

If we become ill with thyroid issues there after, and maybe loose this major gland, we have the numbers on record that we need to try and replicate with the thyroid hormone replacements.

[RockyPath]

Hi nk655chii,

You’re on a thyroid discussion, so all of the responses are focused on thyroid, but it’s quite possible that the migraine is not caused by the levothyroxine but is an effect of some other deficits that show up because the hormone has satisfied only the underlying system.

The body is an astoundingly complex system of interrelated feedback loops. It could be that the hormone is simply exposing a need elsewhere. There are many critical biochemical systems behind migraine. And there is a separate treatment for migraine.

What happens if you skip a day? I assume from your description that you are migraine free.

[nk655chii in reply to RockyPath]

Thanks Rockypath, I observed that when i skipped 3 days Levothyroxine free. I felt a lot better, hence I felt there may be some connection with Levothyroxine medication.. I have resumed 50mg with dinner. Previously, I was 50mg before breakfast and felt very unwell. I am surprised that many narration on this plathform indicate that i am under medicated on 50mcg with thyroidectomy. my tsh has consistently been normal at 3.5. and accassionally 6.5max. my t3 and t4 are also within normal range. what do you advise.

[helvella Administrator in reply to nk655chii]

Do you mean you are taking 50 micrograms of levothyroxine with your dinner? (Or shortly before or after.)

Food interacts with levothyroxine and reduces absorption. I take my levothyroxine at bed-time.

Most people taking levothyroxine find that they need their TSH to be lower than the 3.5 you report. At the highest just above 1 (maybe 1.1 or 1.2) but more likely, under 1. Even below the bottom of the TSH range. My own is just above the bottom of the TSH range for my local laboratory.

I entirely agree that you appear to be under-dosed.

Just adding:

I have had a number of migraines since diagnosis and starting levothyroxine. I suspect, but cannot be sure, they occurred when I was under-dosed.

Luckily for me, they have all been primarily visual migraines - pretty much just the aura.

[RockyPath]

If your only issue is migraines I would think that you are properly dosed on the levothyroxine and something else in the biochemical pathway is producing the migraines.