Hi Lovely people: I am three weeks into starting treatment for quite established Hypothyroidism.
Short facts, TSH 71.2, T4 about 4, and put on full dose very quickly (100mcg Levothyroxin for a week then 150mcg per day.)
It is definitely the answer to my health problems, and I am feeling a little bit better every day. I went back to work this week, as I am keen to keep myself in a healthy mindset too. It works for me, although there have been naps.
The one thing I'm struggling with are my eyes. They were fine before medication (they looked a little dull and small perhaps) but since I raised to 150mcg my eyes have been sore, prickly, bloodshot. The bloodshot settles down over the day and my eyes look quite good, glossy and lively, but they stay painful and prickly. I'm getting some swelling under my lower eye lid - the soft tissues look red with blood blisters, and the white of the eye is a bit swollen below the lashline, especially AM when I have taken the high dose early morning. I have to wear sunglasses as very light sensitive. My eye sight is unaffected.
I've bought eye drops (which have helped a lot, Hycosan Original 0.1%) and sent a message to my Dr. I don't think she knows a lot though and will follow protocol.
My question, Is eye sensitivity a common symptom on Levothyroxin and does anyone have any extra tips for managing it?
Thanks so much x Lucy
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Luckyclaire
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“full dose very quickly (100mcg Levothyroxin for a week then 150mcg per day.”
My body did not react well to a full starting dose either, and the dry eyes turned out to be one of the many symptoms that pointed to over medication i.e. thyrotoxicosis. I come off the medication and started again on a much lower dose which helped.
I hope that isn’t what is happening to you but thought I would share my experience.
Thanks so much for your reply, HealthStarDust. Now looking up Thyrotoxicosis... "Overmedicated" really was what I was thinking but didn't know the term. I was thinking about taking 100mcg first thing and 50mcg later in the day, but was concerned about taking other meds and eating around that. I'll give it some thought and check out the "other symptoms".
Thyrotoxicosis and over-medicated are not the same thing. And, I doubt you have thyrotoxicosis on 150 mcg levo. That said, it's never a good idea to increase by too much or too quickly. The body needs time to adapt. That's obviously one of the things your GP doesn't know. If you felt well on 100 mcg, I'd go back to that and hold it for six weeks, then retest to see where you are. If you need an increase, just increase by 25 mcg and hold for another six weeks. It's a long process, not a quick fix. It can take years to find the right dose. But, as they say, slow and steady wins the race.
I'm not as experienced as others here. You said 'well established ' hypothyroidism. Does that refer to your rather high TSH levels or that you've verb hypo for some years? If the latter, you should proceed more slowly with the dose increase.
It reads as though you have increased your T4 - Levothyroxine medication much too quickly though looking back I read your doctor seems to have been advised to start you off on a weight dosed level of T4 by one of the hospital endocrinologist team.
Starting dose is generally 25-50 mcg daily and bloods are run every 6-8 weeks to measure the effectiveness o the dose, which would be to lower the TSH and increase the T4 results and hopefully relieve symptoms being experienced.
Does increments are by just 25 mcg every 6-8 weeks and so over a period of a couple of months you may well be on 100mcg / then 125 mcg and then 150 mcg.
We generally feel best when our TSH is down at least below 2 and the T4 in the top quadrant of its range as this should convert to a decent level of T3 at around a 1/4 ratio T3/T4 :
What was the reason given for your hypothyroidism -
Did you have your thyroid antibodies run - details would look like - TPO - TgAbs alongside numbers ?
Whatever preparations you use ue on your eyes - please ensure that they are all Preservative Free - even those prescribed by the NHS.
It reads as though you maybe experiencing Thyroid Eye Disease - referred to as TED.
The Thyroid Trust Charitable trust can signpost you to specialist clinics throughout the country where, as I understand it, you will find specialist eye consultants and endocrinologists who work together and monitor and dose adjust your medications.
Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).
If you suspect you may have signs of TED, I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.
Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
I received great advice and support from TEDct, so do get their information pack if you would like further information on the condition. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.
Well done for choosing a preservative-free eye drop product.
You might find that it would help to use another product overnight - one which lasts better. I'm out of touch with best products now - I used to use Lacri-Lube but that is not popular!
According to my optician who isn't particularly knowledgeable about thyroid disease, but I can't entirely dismiss his professional opinion, eye dryness and irritation are a common side effect of levothyroxine.
If I take levo above around 50mcg my eyes get dryer, more painful etc. That said I believe I have these symptoms anyway (intermittent bloodshot, dry eyes and occasional loss of tears were symptoms I experienced long before any knowledge of hashimotos) and probably mild TED and the levo just makes it worse. There's a thyroid receptor behind the eyes (someone correct me please if I'm wrong) and I find it does respond to changes in thyroid hormone.
I actually think your doctor has been quite good to start you on a decent dose of levothyroxine which correlates better to your weight instead of a measley 25mcg or 50mcg that so many people are left on.
Certainly cut back if you want, but you have to be careful because getting an increase once you hit anywhere in the range can be sometimes difficult later, even if you feel physically you need more. So I wouldn't ask your GP for less at this stage where you're still working out what you need unless you have to.
So is the 150mcg levo one tablet? Or 100mcg and 50mcg? If so I would cut down to 125mcg by splitting the 50mcg or just take the 100mcg for now.
Unfortunately levothyroxine results in side effects for some of us, to the point some can't tolerate it at all, but if you can tolerate it (it's great if you can) and the side effects are not too bad, and you feel otherwise improved, you have to weigh up if it's helping more than than irritating and whether you can compensate for the side effects, and I think, even if you were off levo you could find you develop the eye issues later down the line anyway.. it's the nature of the illness that it throws up these surprises sometimes. But it's up to you to decide what you can/can't put up with.
Thanks so much for your response Alanna012, there is some great ideas in there. I'm thinking to go 125mcg for six weeks... I'm booked in for follow up 20th August. Then see where I am. I would rather start high and roll back if that is what it takes. I was very poorly...
this is one of the reasons why vegans are much more at at risk for developing hypothyroidism, they require a gene BCO1 that converts plant form vit A (carotenoids) into retinol, many have mutations in this gene. Only animal foods contain active vitamin A, retinol.
That's really interesting and good to know. Love little facts like this. I guess supplementing with vit A or Cod Liver oil might be wise in general even if a meat eater.
yes absolutely but make sure you get a high quality one like rosita because many of them are rancid, containing high PUFA which is oxidized and essentially full of pro inflammatory free radicals 🚫
That is an interesting observation - I will note that I have used a Hycosan night eye ointment with Retinol (vit A) and vit E and in two nights usage it's done wonders, improved my eyes 80% already....
Result: “Vitamin A caused a significant reduction in serum TSH concentrations in obese (p = 0.004) and nonobese (p = 0.001) groups. Serum T3 concentrations also increased in both obese and nonobese vitamin A-treated groups (p < 0.001).” *although T4 decreased*
Thanks so much for everyone's help. A little update - it was the brand of levo for the 50mcg tablet! The Mercury Pharma brand does not agree with me, my pharmacist and doctor were brilliant and I'm now accord only. I am feeling so much better.
It seems possible that it is the acacia excipient present in Mercury Pharma's levothyroxine tablets.
Am mentioning that partly because it is used in quite a number of medicines and awareness might help avoid it in future. But - obviously - it could be something else.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Thanks Helvella. I used your document to research the content, and had a lightbulb moment and suggested this to my pharmacist - they have taken Mercury and Teva off for me, although have managed it mostly by prescribing Accord only. It worked, I felt better in 48 hours. Blood tests before that came back with overly high T4 and a lab comment of "possibly poor converter". My next bloods are next Wednesday, but I'm feeling loads better and well looked after by interested health professionals.
Thanks so much, onwards and upwards! I am having next bloods on Wednesday, and am feeling pretty good... Just back from working long hours at a music festival and I was in good form, only a couple of fussy moments. I am feeling blessed that treatment appears to be working for me.
Hi HealthStarDust, no I take them in the middle of the night (3am), and go back to sleep. I find they make me sleepy and 'fizzy' about twenty minutes after taking - I can distinctly feel them hit my blood stream but I feel well when I wake up and can get in with a cup of tea etc.
You are welcome. It is a complicated and tricky illness to be sure. I'm sure I'll have trials along the way but know there is a lot of thoughtful advice here when needed I wish you good luck and good health. Hopefully you will find the right path for you.
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