Eye problem: Hello, i am new on here. I have been... - Thyroid UK

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Eye problem

chrissie1996 profile image
23 Replies

Hello, i am new on here.

I have been on diagnosed with Hypothyroidism for 21yrs.

Am on Levothyroxine 75mcg.

Recent blood test shows normal tsh levels.

Have been diagnosed with Conjunctival chalasis, in my left eye.

On researching i noted that this can be a t3 conversion problem.

Can anyone help me with this?

Thanks

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chrissie1996
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Clutter profile image
Clutter

Welcome to the forum, Chrissie1996.

If you want advice on how well you are converting you will need to post your TSH, FT4 and FT3 results and ranges.

chrissie1996 profile image
chrissie1996 in reply to Clutter

I only have my TSH results which are 0.83 range 0.27 - 4.20mlU/L

Clutter profile image
Clutter in reply to chrissie1996

Chrissie1996,

TSH 0.83 indicates you are probably adequately dosed on 75mcg but TSH only doesn't give any clue to your FT4 and FT3 levels or how well you are converting. You can order private TSH, FT4 and FT3 tests via thyroiduk.org.uk/tuk/testin...

chrissie1996 profile image
chrissie1996 in reply to Clutter

Would my GP do these tests?

Clutter profile image
Clutter in reply to chrissie1996

Chrissie1996,

You can ask your GP but there is probably an agreement between the CCG and lab to only test TSH unless TSH is abnormal. Even if your GP can get FT4 tested it is unlikely the lab will test FT3 unless TSH is <0.03.

chrissie1996 profile image
chrissie1996 in reply to Clutter

I have asked for an endocrinologist referral, is that a fruitless route also?

I was going to ask my gp to prescribe some t3 as have read somewhere that after using Levothyroxine for many years it does not convert to t3.

Clutter profile image
Clutter in reply to chrissie1996

Chrissie1996,

It's a myth that long term use of Levothyroxine leads to lack of conversion.

Endo can request FT3 but still lab may decline to analyse unless TSH is very low. Many GPs require a recommendation from a NHS endo before they will prescribe T3. Not all endos believe in prescribing T3 and some CCGs have banned prescribing of T3.

chrissie1996 profile image
chrissie1996 in reply to Clutter

Oh i see.thank you.

I had read that lack of t3 can cause conjunctival chalasis.

Not sure which t3 blood test to go for.

Clutter profile image
Clutter in reply to chrissie1996

Chrissie1996,

If you want to check how well you are converting you will need TSH, Free T4 (FT4) and Free T3 (FT3) done at the same time. Otherwise you can just order FT3 to check your T3 level.

UrsaP profile image
UrsaP in reply to Clutter

Clutter you say that long term use of T4 leading to lack of conversion is a myth. May I ask what you base this on please. I have often wondered if that is why I have conversion problems. I have not had the gene test. But 30 years of poor thyroid treatment, and Hashi's damage I thought may have meant enough damage done to destroy the system? Other than the gene influence, what else caused non-conversion?

Clutter profile image
Clutter in reply to UrsaP

UrsaP,

I base it on lack of evidence. Diogenes wife has been taking Levothyroxine for 45 years and is apparently well.

Possible causes for reduced conversion could be:

Thyroid packing up completely so no thyroidal conversion meaning total reliance on peripheral conversion; Reduced deiodination causing reduced conversion; Hormonal change like menopause possibly reducing conversion.

UrsaP profile image
UrsaP in reply to Clutter

Thanks Clutter , since posting, had a thought that adrenals also a consideration too? Guess more likely thyroid packed up completely or could be the D102? gene, as never felt better on T4, but was untreated for at least 10 years so suspect thyroid already damaged, and 20 years on useless t4 = shot thyroid!

UrsaP profile image
UrsaP in reply to Clutter

@Clutter, just thinking about this again...sorry to keep coming back to it...brain working overdrive....but if Diogenes wife has been fine on T4 all this time, then it must suit her. Maybe, if on T4 longterm, and it not suiting, like myself, maybe the damage done from poor thyroid function and a depleted thyroid, destroyed thyroid, results in poor conversion. Or it could just be that I have the dodgy gene. Can't afford to get the test done.

Clutter profile image
Clutter in reply to UrsaP

UrsaP,

A destroyed thyroid does result in poorer conversion because thyroidal conversion of T3 is lost and there is only peripheral conversion left.

Aren't you taking T3 now? If you're taking T3 conversion is immaterial.

UrsaP profile image
UrsaP in reply to Clutter

Clutter Thanks for this post, I am taking T3 and realise conversion immaterial to me, just wanting to check my understanding, as I was assuming that was the case, but did not know for sure.

SlowDragon profile image
SlowDragonAdministrator

Do you know if you have high thyroid antibodies? Tested at any point in past....if high then you have Hashimoto's or autoimmune thyroid disease.

Very common when hypo, and especially if Hashimoto's to have low levels of vitamin D, folate, ferritin and/or B12

Have these been tested recently, if so post results and ranges.

Getting vitamin levels correct can improve conversion, plus if you have Hashimoto's then gluten intolerance may also be problem reducing T3

Very many of us have to get private blood tests as NHS labs do not do full tests, even if GP does request.

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

No point just asking for referral to a random endocrinologist, you need to do some research first

Email Louise at Thyroid Uk for list of recommended thyroid specialists, some are NHS

louise.roberts@thyroiduk.org.uk

chrissie1996 profile image
chrissie1996 in reply to SlowDragon

Thank you so much for your reply.

Anti-Thyroglobulin Abs. 102 Anti-TPO Antibodies 36 - Nov 2016.

Serum vitamun B12 493. Range 187.00-883.00ng/1 March 2016

Serum ferritin 69. Range 22.0-275.00ug/1

MCH 32. Range 27.00-32pg - May 2017.

I haven't a clue about what is on offer with seeing an endocrinologist- not much from what i can gather.

I will look at your recommendation's for blood testing & thyroid specialist's - much appreciated.

SlowDragon profile image
SlowDragonAdministrator in reply to chrissie1996

You really need the ranges

Anti TPO at 36 - without range can't say for certain if over range (typically it's anything over 34)

So you do possibly have Hashimoto's

Full testing recommended

chrissie1996 profile image
chrissie1996 in reply to SlowDragon

Thanks again.

It was a hospital blood test (lipid clinic as have high cholesterol) & it didn't show the ranges.

Akiyama profile image
Akiyama

Do your eyes constantly water and get sore?

chrissie1996 profile image
chrissie1996 in reply to Akiyama

It's the left eye that is the problem. It doesn't water but is sore.

The right eye waters in the winter & has done for years but worsening.

btsg09 profile image
btsg09 in reply to chrissie1996

hi Chrissie, hope you are well. I have recently been referred to eye specialist for same problem. Have you had any treatment done in your left eye? If you have, what type of treatments did you have? How do you manage your symptoms?

chrissie1996 profile image
chrissie1996 in reply to btsg09

Hi btsg09Sorry to hear that you have the same eye problem as me.

It's most uncomfortable.

Unfortunately, I have not found much relief with this issue.

I do find if my blood sugar drops or am tired it makes the problem worse.

Sometimes I do not have symptoms for a period of time.

I did try taking T3 in the hope that it would help, but got no relief.

I hope that you have better luck than me in resolving this.

I am constantly working on diet & supplements & am being hopeful.

🤞

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