Macular degeneration and levothyroxine link - Thyroid UK

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Macular degeneration and levothyroxine link

vandewalle0 profile image
15 Replies

I'm 60 years old and been 9 years on levo.Recently I was diagnosed with Dry macukar degeneration.I do not smoke or am genetically linked to eye disease.I found a study paper saying levothyroxine increases risk of md and is a serious side effect.Is anyone else suffering from this eye disease which is the leading cause of blindness.

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TiggerMe profile image
TiggerMeAmbassador

I'm sorry to hear this, could you please add a link to the study paper

vandewalle0 profile image
vandewalle0 in reply toTiggerMe

blogs.biomedcentral.com/on-....

vandewalle0 profile image
vandewalle0 in reply toTiggerMe

There are lots of studies available on line..the Rotherham study

TiggerMe profile image
TiggerMeAmbassador in reply tovandewalle0

Thank you, I did look at a few but they weren't conclusive due to too any variables

TiggerMe profile image
TiggerMeAmbassador in reply tovandewalle0

I'm going to have a proper read of this later but this bit stands out...

We demonstrated that higher levels of free thyroxine (FT4) are associated with an increased risk of AMD. This effect remained when we analyzed subjects who had normal thyroid function and when we excluded those that use thyroid medication.

This seems to suggest naturally occurring high fT4 as well as HRT people?

We do always recommend keeping fT4 below the top of range and ideally adding T3, which is often easier said than done when dealing with the NHS

Has your fT4 always been high in range?

TiggerMe profile image
TiggerMeAmbassador in reply toTiggerMe

healthunlocked.com/thyroidu......

Rapunzel profile image
Rapunzel

vandewalle0, hail! I'm sorry you're going through this but not surprised. I've read many times that thyroid issues mean that at amitochondrial level, pretty much everything is affected. It's the degree of harm cuased that's random.

Depending on how you access your HU forum, somewhere to the side or below your post will be a series of 'related posts'. Have a ruffle through these and something useful may come up. Here's hoping 😘

DippyDame profile image
DippyDame

Yes I have both hypothyroidism and dry macular degeneration.....just about any part, or all, of the body can be affected if cellular T3 is low.

I'll read the studies you link here later, thank you..

I would not avoid levothyroxine treatment on the chance of developing MD. If it does happen for whatever reason there are now treatments that can help.

My brother lost his sight to MD but foolishly he would not have treatment.....he did live to 91 though!

I had YAG laser eye treatment on Thursday to improve the sight in my left eye which deteriorated after cataract surgery....quick, painless and effective.

It all sounds a tad scary but having undergone 3 eye surgeries and the YAG, and now aged 79, I would advise you not to get too concerned about the levothyroxine/MD connection.

Your MD might not progress, after years mine is still fairly stable.

The important thing, for general health, is to keep your FT4 within range....high FT4 can potentially cause a number of problems

Try not to worry about it and have regular eye tests

The study you linked above suggests that those with hyperthyroidism have the highest risk of AMD compared with other thyroid states.

You are not hyperthyroid!

Take care.

Libuse profile image
Libuse in reply toDippyDame

Thank you for your wise words Dippy Dame. So much fear is generated by ‘What ifs?’ ❤️

Marz profile image
Marz

I have Hashimotos and MD. I came across Dr Chris Knobbe on-line. He is an opthalmologist in the US and has written books - linking MD with diet. I questioned him by email as I have enjoyed good fresh food for most of my life. I introduced the concept - we are what we absorb - not what we eat ! He did agree and scolded himself for not mentioning that in his recently completed book... ! A few years ago.

I cannot help thinking inflammation is involved with MD which brings us back to the gut...

Currently using Near Infra Red light 2/3 minutes a day...hoping to slow the progression.

I have mostly been T3 only since diagnosis in 2005.

connyankee profile image
connyankee

I'm in the process of reading the late Dr. Broda Barnes book: Hypothyroidism: The Unexpected Illness. I've never seen this listed as one of the "signs of Hypothyroidism" but on page 24 of the book, where the author cites many of the symptoms and signs of the disease, half way down the list after "Poor vision" is "Changes in back of eye" (From J.H. Means, L.J. DeGroot, and J.B. Stanbury, The Thyroid and Its Diseases, McGraw-Hill, 1963, pgs. 321-22.) Maybe you had an issue before you were diagnosed? Before I was diagnosed, and pregnant, I saw a smudgy grey spot on the middle of the pages of any book that I was reading. I ignored it of course thinking that it was my poor lens prescription. Turns out that my Father's sister developed MD in her old age after living a lifetime with autoimmune (and probably Thyroid) disease. My Retinologist is keeping watch on my retinal spot, but I take eye vitamins as insurance.

3-T1AM profile image
3-T1AM

Hello vandewalle0. Thank you for bringing this up. I found many published studies on the NIH website and they are conclusive. Partial quote and link below. T3 is implicated in retinal disease as well. pubmed.ncbi.nlm.nih.gov/277...

Thyroid Dysfunction and Ten-Year Incidence of Age-Related Macular Degeneration

"Participants who reported current use of thyroxine (n = 67; 7.3%) versus those who were not current users (n = 839) had a 68% increased risk of incident AMD, multivariable-adjusted OR 1.68 (95% CI 1.01-2.82). Similarly, participants who had ever been on thyroxine medication (n = 77; 8.4%) compared to those who had never been on thyroxine (n = 829) also had a higher risk of any AMD, multivariable-adjusted OR 1.91 (95% CI 1.18-3.09).

vandewalle0 profile image
vandewalle0 in reply to3-T1AM

Thank you so much for this research and your well informed link response.Im hoping to speak to my gp about this as its scared me so much as my sight has become poor so quickly.I feel like the watch and wait treatment for dry macular degeneration is just not good enough.This was the medical approach when I was hypothyroid.Wait until your tsh is 10 then we will treat it.I lost my teaching profession because I couldn't function.Id love to come off levothyroxine completely as it never had a positive effect for me.Im on 100microg daily and my t4 level is always low at 10.I take liothyronine 15microgrms which worked immediately and improved my symptoms.Is it possible to come off levothyroxine after being on it 9 years?Thanks

3-T1AM profile image
3-T1AM

I quit taking synthroid last January after 12 years. Like many here only a high dose "worked" for me (200), but it was still a nightmare every single day. I tried t3 for years too--meh. I don't know your thyroid situation and I'm not suggesting that you quit, but wanted to let you know it's possible and potentially positive. Besides, you can always start levothyroxine again if you change your mind!

vandewalle0 profile image
vandewalle0

Just read your post.Wow did your symptoms return or were you able to manage them.An additional problem is I've gained 4 stone since taking levothyroxine.Cant lose weight with exercise or diet.Its very depressing.

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