Migraines and lethargy 2 years into Levothyroxi... - Thyroid UK

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Migraines and lethargy 2 years into Levothyroxine. Blood test results

Runner25 profile image
36 Replies

I requested a full blood count to see if I can get to the bottom of why I am still feeling unwell 2 years after starting Levothyroxine. I weigh 8 stone 8 pounds and I’m 5.3. I have been getting headaches that have turned into migraines and generally feel in low energy and mood. I have run for years, but that is now making me exhausted and results in worse headaches. I asked for my T3 to be tested but they have not done so. My other results are as follows:

T4 19 pmol/L (10.0-22.0)

TSH 1.0 mu/L (0.3-5.5)

In one week I will generally have 2 days when I feel ok and 5 when I gave varying degrees of headaches, fatigue, low mood.

I feel like the doctor is completely fed up with me!!

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Runner25
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36 Replies
Lalatoot profile image
Lalatoot

Can't say anything without the FT3 result. I had similar results for years and felt awful - it was the FT3 that was low.

Runner25 profile image
Runner25

I would LOVE to get rid of my headaches, they are absolutely debilitating. Mine range from muzzy head to full on migraines. I usually have 1 or 2 days a week with a normal head! I don’t know why I have the normal day’s, but glad I do. I think my worry is that they are getting less frequent. The other bad thing is that pain killers don’t do anything. I’m sure my doctor said my vit levels were ok, but he also said my T3 was and on the results it wasn’t on there!!

Runner25 profile image
Runner25

Thanks for this info. I think I will try B12. Is there such a thing as too much though? Can you recommend a good one to take and should it be taken far apart from Levo?

greygoose profile image
greygoose in reply toRunner25

You really shouldn't start supplementing B12 without getting tested first. You need a base-line, even if you can't over-dose on it. It could be that your B12 is so low that you need testing for Pernicious Anemia. But, if you start supplementing, you won't be able to do that.

And, while you're at it, it would be a good idea to get vit D, folate and ferritin tested, too.

If you do end up taking B12, either in pill form or injections, you also need to take a B complex, because the Bs all work together and need to be kept balanced. :)

Runner25 profile image
Runner25 in reply togreygoose

Thanks for this. The Dr said all my vit and min levels were within range? He referred me only today to an Endo so maybe I’ll wait to see him before increasing/starting any supplements. A note worth mentioning, I was on menoserene which is a multi vit with isoflavins. I have stopped taking it as I had read that soy can interrupt Levo and I wondered if this was causing me the bad headaches. The headaches did get better for a while, but now they’re back with a vengeance!

greygoose profile image
greygoose in reply toRunner25

It is very important to remember that doctors - endos included - get no training in nutrients. They don't know any more about them than your or I - probably less than I! So, for them, anything in-range - even scraping along the bottom - is fine! But that is not so. For the most part, the ranges are far too wide, so just being 'in-range' is not good enough. You need to know where in the range your result falls. So, always, always get a print-out of results, with ranges, and post them on here, if necessary, and let someone who knows something about it have a look. Do you have the actual numbers?

All mult-vits are bad news, and my personal opinion is that they should be banned! And menoserene is no exception, for many reasons:

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.

* The magnesium you take - and just about everybody need to take it - should be chosen according to what you want it to do:

Magnesium citrate: mild laxative, best for constipation.

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D.

I don't know if the multi had anything to do with your headaches, but soy products really aren't a good idea, either. It's not exactly that soy interfers with levo, it's that soy impedes the uptake of thyorid hormone - endogenous or exogensou - by the cells. So, you can have good levels in the blood, but still be hypo.

Runner25 profile image
Runner25 in reply togreygoose

Gosh thanks for all this info. I’ll try to upload a copy of my full results.

Runner25 profile image
Runner25 in reply togreygoose

B12 667

Ferritin 57.0

Folate 19.5

Potassium 135nmol

Serum Free triiodothyronine 4.1.

I am already on calcium with vit d at 750mg twice a day but must admit to not taking them as I was worried these were stopping the Levo, but I will now start taking them just 4 hours from Levo

Marz profile image
Marz in reply toRunner25

How much VitD are you taking ? When taking VitD the uptake of calcium from foods is improved so adding more calcium is not a good idea ...

Ferritin is better mid-range. - around 70 is often mentioned. Please add ranges to your results above as labs can vary !

greygoose profile image
greygoose in reply toRunner25

Have you been prescribed Adcal? For any particular reason? Taking calcium supplements is a very, very bad idea. So, if you can possibly avoid it, do so. But, doctors prescribe it because they don't know any better.

Runner25 profile image
Runner25 in reply togreygoose

I am Osteopenic. I must admit I did read up and didn’t like the fact it can harden the arteries and have a very negative effect on the heart!

greygoose profile image
greygoose in reply toRunner25

It can also have a negative effect on the bones! Calcium is not a 'cure' or even a prevention for osteoporosis. And, it's doubtful if osteopenia is even a real thing. Other nutrients are far more important for bones than calcium, but we've all been brainwashed by the dairy industry. I would suggest you do more research on the subject, and perhaps join the Bone Health forum on here:

healthunlocked.com/bonehealth

greygoose profile image
greygoose

Also vit d and oestrogen need to be four hours away from levo. :)

greygoose profile image
greygoose

I'm not that sure about PA testing, because I've never done it (my B12, first time tested, was 345, about, and my GP said is was absolutely perfect! I said, not! And he said, well, it's only a vitamine. 🙄) But, Intrinsic Factor is one of the tests, yes. I think there's also MMA? Marz ! Help! She knows. lol

greygoose profile image
greygoose

Pretty certain you can, yes.

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH and Ft4 is completely inadequate

You need FULL Thyroid and vitamin testing as per in depth replies to previous post

healthunlocked.com/thyroidu...

Runner25 profile image
Runner25 in reply toSlowDragon

Thank you. See my reply to slow dragon. The thyroid was def just TSH and T4 but he has referred me to specialist now x

Marz profile image
Marz in reply toRunner25

I would research carefully the Endocrinologist as they often know little about the thyroid and specialise in diabetes

SlowDragon profile image
SlowDragonAdministrator in reply toRunner25

Was this Ft3 test at same time as TSH and Ft4

What’s the range on Ft3.

Result looks low

Obviously you need to test vitamin D

vitamindtest.org.uk

Are you currently taking any magnesium or vitamin K2 mk7?

Runner25 profile image
Runner25 in reply toSlowDragon

He didn’t test my T3 as far as I can tell. All my vitamins tests came out as normal.

SlowDragon profile image
SlowDragonAdministrator in reply toRunner25

Serum Free triiodothyronine 4.1.

This is Ft3 .....but need range to know what the level is

Usually, but not always, range is 3.1-6.8

Runner25 profile image
Runner25 in reply toSlowDragon

Oh ok, I’ll check.

Runner25 profile image
Runner25 in reply toSlowDragon

Yes it’s 3.1 - 6.8

SlowDragon profile image
SlowDragonAdministrator in reply toRunner25

So Ft3 is only 27% through range

Calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Woefully too low

Most people need Ft3 at least over 5....often nearer 6

SlowDragon profile image
SlowDragonAdministrator in reply toRunner25

You need

Folate, ferritin, vitamin D and B12 tested.

Can’t see any results for the first three

Suggest you get tested ASAP

Exactly What vitamin supplements are you currently taking?

Runner25 profile image
Runner25 in reply toSlowDragon

Calcium with vit D as prescribed due to osteopenia. I do have an extremely healthy diet though!

SlowDragon profile image
SlowDragonAdministrator in reply toRunner25

Hypothyroidism causes low stomach acid..leads to poor nutrient absorption...regardless of how good your diet is

SlowDragon profile image
SlowDragonAdministrator in reply toRunner25

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Runner25 profile image
Runner25 in reply toSlowDragon

Ferritin 57.0 (13-150)

B12 667 (197 -771)

Folate 19.5 ( 2.1-26.8)

SlowDragon profile image
SlowDragonAdministrator in reply toRunner25

Never supplement iron without doing full iron panel test for anaemia first

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

SlowDragon profile image
SlowDragonAdministrator in reply toRunner25

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 print it and highlight question 6 to show your doctor



please email Dionne at

tukadmin@thyroiduk.org

SlowDragon profile image
SlowDragonAdministrator in reply toRunner25

First step is to get dose increase in levothyroxine

Guidelines on dose by weight give dose of 88mcg daily @ 1.6mcg per kilo

(75mcg/100mcg on alternate days)

This might be enough to raise Ft3

Retest after 6-8 weeks on 88mcg

Or, as you are very active you might need 100mcg daily

Just levothyroxine is much easier to manage, if you can tolerate it, than Levo plus T3 which is EXTREMELY difficult to get prescribed on NHS

If these increases don’t help, then reducing dose levothyroxine back to 75mcg and adding T3 alongside levothyroxine

But always worth trying levothyroxine only as easier option first

SlowDragon profile image
SlowDragonAdministrator in reply toRunner25

Email Dionne at thyroid uk for list of recommend thyroid specialist endocrinologists ..NHS and private

Marz profile image
Marz

Testing for Intrinsiic Factor anti-bodies can often throw up false negatives. Martyn Hooper - Chairman of the Pernicious Anaemia Society - tested negative 10 times before a positive result ... he was very poorly.

Your B12 result - only around 20% of the result is available to be transferred to the cells where it is needed. The Active test indicates the amount available in the blood for transfer but not the amount in the cells.

Raised levels of MMA and Homocysteine can indicate B12 deficiency in the cells.

Levels of B12 below 500 can be the cause of neurological symptoms and cognitive decline. Also B12 is involved in the maintenance of the myelin sheath that protects every nerve running through the body. Think of plastic covering on electric cabling ! 🌻

I have surely missed something - ah yes B9/Folate/ Folic Acid works with B12 in the body - in the bone marrow creating red blood cells being one.

Marz profile image
Marz

PA is auto-immune - parietal cells that produce intrinsic factor are attacked. B12 levels are usually very low with PA. Intrinsic Factor binds to B12 molecules in the stomach - once extracted from food - before entering the Duodenum and to protect it on the long journey down to the Terminal Ileum. Here it is metabolized and returned to the liver for storage and re-use. Clever stuff.

Having lost my Terminal Ileum to surgery almost 50 years ago - the damage was done before I learnt of its role. Another medical error and never mentioned in my six monthly checks at the Crohns Clinic over many years.

Hillwoman profile image
Hillwoman

MMA is an indirect way of determining whether B12 is being metabolised within cells. No Active B12 is needed with it, though they are often included in the same lab panel.

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