eye problems: I've just been reading about the... - Thyroid UK

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eye problems

ShazSim profile image
ShazSim
•34 Replies

I've just been reading about the eye problems. I have an underactive thyroid and for at least a year I've had a problem with my eye forcing itself closed...particularly in bright sunlight. My GP tried to say I had Belspalsy and prescribed steroids (which I didn't take). I had no other symptoms. I am now thinking this could be thyroid related!

I am also continuously tired and have lots of pains in my legs. Is this thyroid related or something else?

TIA

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ShazSim
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greygoose profile image
greygoose

Anything and everything can be related to thyroid, but difficult to say without more details. What are you taking for your thyroid? And how much? Do you have copies of your labs to share with us? With the ranges, of course. :)

ShazSim profile image
ShazSim• in reply togreygoose

Thank you. I've just had bloods done so will get a print out when they return.

I currently take 100mgs of Levothyroxine per day.

greygoose profile image
greygoose• in reply toShazSim

OK, so there's a real possibility that you're under-medicated. :)

ShazSim profile image
ShazSim• in reply togreygoose

Thank you. I also get lots of palpitations.

greygoose profile image
greygoose• in reply toShazSim

That can be due to under-medication.

SlowDragon profile image
SlowDragonAdministrator

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer 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.

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.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Low vitamin D frequently causes pain in legs and is extremely common when hypothyroid

Peder profile image
Peder

Hi.. i have eye pain as though someone is pushing the eyeball in. Its all been checked out and has been put down to fibromyalgia where the optic nerve is being affected. Along with fibro, i have hashimoto and hypertension, which also causes me to suffer with photo sensitivity..

Marz profile image
Marz• in reply toPeder

How does it link to FM ? Guess that's the problem - they seem to blame so much on FM. How are your levels of VitD and B12 ?

Peder profile image
Peder• in reply toMarz

Weeeeelllllll..long story short..i had a blood test 2 weeks ago.. all they checked was basic tyroid function test (SLA) serum TSH level and Serum free T4 level. At same time, i had liver function, FBC's, urea and electrolytes and serum lipids (only cause i asked for my cholesterol although high is linked to being under treated). So no T3, TPO, TG (although i had antibodies tested 2 years ago which proved the Hashimoto). No vit D, folate, ferritin and B12.

So i complained. Im booked in with GP next week to do a review of meds etc. I was on amitriptyline and citalopram due to depression and restless leg etc.... but i stopped them 3 weeks ago due to suffering migraines. apart from jittery legs and my wife moaning at me to keep still, i feel better mentally and physically. Ive never got any energy or enthusiasm to engage in anthing, but in the last week, ive stripped and cleaned out my garage, woodshed (junk store), shed. Cleaned and reorganised all my tools (and ive got a lot as i inherited all my dads to which he was a lorry fitter / mechanic). Ive got a 1980 porsche that needs rebuilding . i got it 4 years ago to which ive done nothing, but in the last week, ive lifted the bonet, cleared out all the crap, and started making a shopping list.

All in all, i dont

Peder profile image
Peder• in reply toPeder

oops...im not letting either condition affect me. im in control,, i may have to do things differently and slower...but im not going to be beaten

Marz profile image
Marz• in reply toPeder

I would push for B12 - Folate - Ferritin - VitD testing. All need to be optimal for your thyroid meds to work well and for you to be well. Restless legs - low iron - low magnesium ? Hashimotos trashes the uptake of vital nutrients ... good luck with your car restoration !

Low B12 & VitD can be linked to low mood - along with low T3. What was your FT4 & TSH result ?

Peder profile image
Peder• in reply toMarz

TSH 2.8 and T4 12. I had the bt done about an hour after taking 75mg levothyroxine.

Marz profile image
Marz• in reply toPeder

TSH would be better around 1 or lower. Blood tests should be done fasting and take the T4 afterwards. Looks as if you need an increase in your dose. How long have you been on 75mcg ? Just above a starter dose ... Your FT4 looks LOW in range - even though you haven't posted the range :-) This means your FT3 will be dire and the possible cause of your symptoms ... Sadly Docs are not aware of the importance of the T3. The T4 you are taking is a storage hormone doing very little in the body - and needs to convert into the ACTIVE T3 - needed in every cell of your body. So when the level is low there simply is not enough to go around - a bit like spreading a teaspoon of butter on a loaf of bread - impossible !

Thyroid Testing can be done with Home Testing Kits through Thyroid UK - see link below ... click onto About Testing where there are several companies ... Used by thousands on this Forum as it is the only way to have the correct testing done for diagnosis and for the correct treatment.

thyroiduk.org

Peder profile image
Peder• in reply toMarz

ahh ok..

Serum TSH level 2.8 mlU/L (0.40 - 5.00 mlU/L)

Serum free T4 level 12 pmol/L (9.00 - 19 pmol/L)

All my problems started Jun 2017, (had reflux last 25 years) where i had a bacterial infection which sent my pituitary adrift, causing adrenal s to play up affecting my cortisol and adrenal levels, being diagnosed with Hypopituitarism and being hypoadrenal. Along with this, i developed hashimoto, hypertension. After 18 months (jan last year), cortisol levels returned but only to baseline normal. I was then diagnosed with fibromyalgia last year.

75mg is what i was prescribed by my endo. However, i was discharged from endo Jan 2018, but i am still only on 75 mg.

Marz profile image
Marz• in reply toPeder

You need to be on more Levo so you have a higher in range T4 which in turn will give you a satisfactory T3 ... It is the T3 when low - that causes symptoms and affects the adrenals too ... Please read as much as you can around this Forum where you will learn so much. How do you take your levoT4 ?

Are you still treating the Reflux ? Most Hypos have LOW acid :-)

Peder profile image
Peder• in reply toMarz

in the morning as soon as i wake with water. I then leave it an hour before taking other meds, then may have food and drinks after that.

Marz profile image
Marz• in reply toPeder

I only asked as your TSH is raised and T4 low - so wondered if something is preventing the uptake/absorption of your levo.

Are you still treating the reflux ? - as that could be an issue re absorption.

Peder profile image
Peder• in reply toMarz

Ive had reflux for about 25 years and i take 20mg omeprazole an hour or so after the levo, and before food.

Marz profile image
Marz• in reply toPeder

PPI's are known to reduce the level of B12 and many other nutrients and is linked to a possible link to Alzheimers. This could be due to LOW B12 caused by the drug. Hypos have LOW stomach acid not high - so again it suggests you are under-medicated. Have you tried more natural treatments ?

Peder profile image
Peder• in reply toMarz

No...not yet. Ive got another GP appointment on Wed next week. I think ill discuss it then, Thanks for your help. :)

Marz profile image
Marz• in reply toPeder

Just remember they receive funding points for prescribing a PPI - and nothing much for a good dose of Levothyroxine. Your GP will know very little about natural treatments - sadly. Why not post your own question here and let the wisdom of the members here help. Betaine HCL is one treatment - there are many others. Symptoms of low and high acid are similar. 😊

SlowDragon profile image
SlowDragonAdministrator• in reply toPeder

Peder

Majority of hypothyroid patients have low stomach acid, not high acid

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

scdlifestyle.com/2012/03/3-...

naturalendocrinesolutions.c...

Thousands of posts on here about that. Virtually identical symptoms but very different treatment.

healthunlocked.com/search/p...

Long standing ppi can cause low B12 and low magnesium

pulsetoday.co.uk/clinical/m...

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

But you can not just stop omeprazole. Has to be done extremely carefully

Ask GP to test vitamin D, folate, B12 and ferritin levels

These need to be optimal for good thyroid

75mcg Levothyroxine is only one step up from starter dose. Vast majority of patients need somewhere between 100mcg and 200mcg Levothyroxine.

Nice guidelines are 1.6mcg Levothyroxine per kilo of your own weight

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

So that's one of the reasons many find taking Levothyroxine at bedtime can be more effective (must be on empty stomach)

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

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.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

Peder profile image
Peder• in reply toSlowDragon

Thank you... Review with GP in 6 hours..

SlowDragon profile image
SlowDragonAdministrator• in reply toPeder

Hopefully you had 25mcg dose increase in Levothyroxine

GP should be testing vitamin D, folate, ferritin and B12

Plus magnesium (though it's an unreliable test) - omeprazole can cause very low magnesium.....low magnesium is very common reason for restless legs

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

healthline.com/health/restl...

But don't be surprised if GP completely unaware that hypothyroid patients very often have low stomach acid

Or that low magnesium can cause restless legs

Many hypothyroid patients frequently have low magnesium anyway

Loads of posts about magnesium on here

Peder profile image
Peder• in reply toSlowDragon

Nope..no increase... no bt for t3, but he is going to do a bt for vit D and b12..Is it worth me just paying for my own BT?

SlowDragon profile image
SlowDragonAdministrator• in reply toPeder

Definitely....it's the only way thousands of us make progress

You need Folate and B12 tested together, vitamin D AND ferritin

You already know you have Hashimoto's

Essential to test vitamin D, folate, ferritin and B12 regularly, probably at least twice a year. If levels are too low, (very likely) and need supplementing then you need to retest to check levels are improving on supplements

Low vitamin levels are extremely common with but especially if you have gut symptoms

Low vitamins and/or autoimmune thyroid disease frequently means patients have poor conversion of FT4 (Levothyroxine) into active hormone (FT3)

Poor conversion is invisible if you only test TSH. Or TSH and FT4

When vitamins are low thyroid blood tests often show very low TSH and high FT4, even when on too small a dose of Levothyroxine, BECAUSE conversion of FT4 to FT3 is so poor

Levothyroxine can NOT be used by the body, it has to be converted into FT3 to be used

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to regularly test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if on too small dose of Levothyroxine

Long term PPI - omeprazole depletes vitamins especially B12 and magnesium

Low Magnesium extremely common with low vitamin D too

Low magnesium linked to restless legs

Likely your gut issues were always due to being borderline hypothyroid with low stomach acid.

We see hundreds of similar cases, where acid reflux due to low stomach acid is misdiagnosed as high stomach acid

healthunlocked.com/search/p...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

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 or all vitamins

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

Come back with new post once you get results and ranges

Like thousands on here, I only made progress after getting FULL Thyroid and vitamin testing, more on my profile.

Peder profile image
Peder• in reply toSlowDragon

Thank you so much....where is the best place / company that allows private full blood draw. My wife is an Intensive care ward sister so she is qualified to draw blood.

SlowDragon profile image
SlowDragonAdministrator• in reply toPeder

Most popular are Medichecks or Blue Horizon

Medichecks tests Active B12- considered more accurate

Blue Horizon tests serum B12 (same as NHS)

Blue Horizon tests total T4 as well as FT4

Medichecks only tests FT4,

Suggest you wait to see that GP actually tests vitamin D (lab may refuse to test)

Medichecks often has offers on Thursdays. Blue Horizon offers are more varied

Thyroid plus vitamin (not including vitamin D)

medichecks.com/thyroid-func...

bluehorizonbloodtests.co.uk...

You can order vacutainer option, but not need to pay for private blood draw, as your wife can do it

Only do test on Monday, Tuesday or Wednesday morning. Post off straight away. Results emailed to you 2-3 days later

Including vitamin D option

bluehorizonbloodtests.co.uk...

medichecks.com/thyroid-func...

SlowDragon profile image
SlowDragonAdministrator• in reply toPeder

Fibromyalgia is often linked to being under treated and therefore still hypothyroid

MaisieGray profile image
MaisieGray

Thyroid eye disease, generally associated with Graves' disease, can also, more rarely, develop in association with Hashimoto's too - do you have Hashi - but I think you'd likely have a broader spectrum of some of the symptoms, than you mention. A single eye closing in sunlight can be symptomatic of more than one condition of course, but it's often found specifically with intermittent exotropia, where from time to time the eye deviates outwards (ie the opposite to esotropia/being cross-eyed). I think with Bell's Palsy, you get more of an eyelid droop than the eye responding to sunlight by closing.

Peder profile image
Peder

hi... the eye pain seems to be in the same eye, and photosensitivity seems to be all the time. I have seen an optician who has performed a retinal scan to which all she noticed was my hypertension which could also affect my eyes. At least these two symptoms are easily dealt with, turn lights off indoors, its saving electric too, so not all bad..

I am going to research thyroid eye disease though, prior to my gp visit..

Marz profile image
Marz• in reply toPeder

I have age-related macular de-generation and I recently posted an article about it. Click onto my name above and it will be there. Low VitD was mentioned. 😎

Peder profile image
Peder• in reply toMarz

will do

TYVM

Marz profile image
Marz• in reply toPeder

healthunlocked.com/thyroidu......

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