Newbie struggling with hypothyroidism

[Julescat]

Hi there. I’m currently off sick because I am so exhausted and my eyes are so dry and causing me massive discomfort. Not sure whether to go back to work or not as I can’t be off forever! How long did the meds take to work for others?

[greygoose]

Hi Julescat, welcome to the forum.

According to your profile, you've only been on 50 mcg levo for three weeks. So, it's very early days for you. 50 mcg is just a starter dose, you're probably going to need a lot more than that in the end. And, it takes at least six weeks for it to fully take effect. Nothing happens quickly with thyroid, I'm afraid. So, patience is the key.

Have you had your nutrients tested: vit D, vit B12, folate and ferritin? These could all be low, making you feel even worse. So, it would be a good idea to get those tested, then we can help you build up a supplement regime to optimise them. Which will help.

In the meantime, get as much rest as you can, and read up on the thyroid. You need to know as much as possible to help yourself get well.

[Julescat in reply to greygoose]

Thanks for your thoughts. I know I’ll need to go back to work but feel so rubbish. I’ll look into the supplements you have suggested.

[greygoose in reply to Julescat]

You'll have to eventually, but don't be in too much of a hurry.

Best not to look into the supplements until you've had the tests done. Nothing is going to help if you don't need it - more is not better. And, with things like vit d and iron, it's dangerous to take too much. So, do get the tests done, first.

[Julescat in reply to greygoose]

Hi Greygoose. Had tests done yesterday and decided to go back on Monday. Apparently my class (4-5 year olds) cheered when they found this outs. How cute. 🤪

[greygoose in reply to Julescat]

Don't forget to get a print-out of your results!

[san_ray70 in reply to Julescat]

Hi Julescat, I was diagnosed with under active thyroid 15 yrs. ago, apart from itchy eyes at night, if I take levo. I am ok. It takes a while to get to the right dose, my doctor thinks I am on the correct dose. I hope you feel better soon.

[Julescat in reply to greygoose]

Hi there. I’ve now been put on folic acid so thanks for suggesting the tests. I have the results from my last bloods. TSH 61.20 mU/L. FT4 <2 pmol/L. Does that mean anything to you? Thanks

[greygoose in reply to Julescat]

It means you are very, very hypo. I hope they are increasing your levo. I don't really think you should be going back to work with a TSH that high. And, you certainly shouldn't be driving. It's not recommended to drive with a TSH over 20.

Your FT4 is very low. You must feel terrible!

[Julescat in reply to greygoose]

OMG. You would have thought the hospital dr would have told me that and told me to stay off work and not drive. I haven’t heard that before. Thanks for sharing.

[greygoose in reply to Julescat]

You're welcome.

[SlowDragon Administrator]

You will need thyroid levels retested 6-8 weeks after each dose increase

Make sure to get blood test as early as possible in morning and before eating or drinking anything other than water. Last dose of levothyroxine 24 hours prior to test

Ask GP to test vitamins now.

Always get your results and ranges on all tests

Come back with new post once you get vitamin results and again with thyroid results

What were your thyroid results before starting on levothyroxine?

The aim of levothyroxine is to increase dose slowly in 25mcg steps up from starter dose of 50mcg until TSH is under 2 and FT4 in top third of range and FT3 at least half way in range

Most people eventually need at least 100mcg

[Julescat in reply to SlowDragon]

Thanks for your advice ... not had my follow up letter yet from hospital and didn’t ask for levels when I went last time. Will ask doctor at my next visit. Any advice on working with kids and managing exhaustion? Lol

[SlowDragon Administrator in reply to Julescat]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get historic test results is to register for online access to your medical record

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.

Getting vitamins tested by GP asap would be good idea

Or test privately

Starting with vitamin D £29 via NHS postal kit

vitamindtest.org.uk

[Julescat in reply to SlowDragon]

Thanks

[Julescat in reply to Julescat]

I usually get a letter from the hospital with my levels after my appt but so far neither myself nor my go have received the latest letter. I keep each letter so I can check the levels. Hopefully I’ll get it soon so I can check but will write them down next time at the appointment.

[Lotus-Blossom]

For me it took up to 2 months.

[Buddy195 Administrator]

For dry eyes I use HycoSan extra or VisuXL drops. I’m also taking Eye Complex 7, which is lutein and zeazanthin. All available from Amazon!

[Buddy195 Administrator]

....forgot to say that I also have mild TED, so totally relate to eye symptoms. I find wearing sunglasses really helps- have reactive lens in my prescription glasses. Apart from dryness, do you have any other eye symptoms?

[Julescat in reply to Buddy195]

Hi Buddy195. My eyes are red and inflamed and my lids are very swollen. I look awful. My dr has just prescribed me some Zeroaqs emollient which is soothing the outside of my eyes more than anything so far as they have felt gritty and sore. I’m now using Xailin at night and Hycosan extra otherwise which the optician recommended.

[Buddy195 Administrator]

Hi Julescat,

I’ve been there- it will improve!

I find VisuXL the most lubricating drops if dry eye continues. I use the HycoSan every half hour when my eyes are inflamed. Don’t let them dry out- keep using preservative free drops.

My Endo also prescribed a diuretic furosemide for when eye swelling worse.

I take lutein and zeazanthin (eye complex 7 from Amazon) and this has really helped alleviate dryness and reduce redness. I have trialled black seed oil, but haven’t seen any change using this.

It’s important you supplement with selenium while eyes inflamed- I take 200mcg. Do not take more than this as over 400mcg can be toxic.

Keep posting or message me if you want any further support. It does help to chat to forum members who have similar symptoms! Ling has given me lots of great advice- do read her posts. 😊

[Julescat in reply to Buddy195]

Hi. How do you decide when to use which eye drop?

[Buddy195 Administrator]

Hi, for me the VisuXL is thicker so I use that at night/ when I’m at home. The HycoSan are very easy to apply / more watery, so use when I’m at work or out and about. I did buy some HycoSan night drops, but these were too thick for me & I felt it was hard to see as drops so thick/ oily.

[Julescat in reply to Buddy195]

Thanks that’s really helpful. I’ll look into getting some of the VisuXL