Newly diagnosed hypo and can’t cope anymore

[Wwerty]

Any advice appreciated, was diagnosed 11 weeks ago due to going to gp due to dizziness and feeling jittery inside, diagnosed with ear infection ( I have psoriasis in my ears and the skin was infected) antibiotics for a week felt back to normal, few days later the dizzy feeling returned, more like a swaying feeling, anyhow dr decided to do bloods but didn’t think anything would show, came back and tsh was 5.3 so did bloods for antibodies which was positive at 192, started on 25mcg levo thyroxine and for the first week felt great then the the vertigo feelings came along with lots of other symptoms, I New it was the drug as the vertigo drunk like feeling would start the same time every day, also palpitations, gp said side effects! Ok I’ll ride it out, started feeling worse, tired achy muscles, hair falling out, got another blood test 5 weeks after starting levo and my tsh was 3.1, dr increased dose to 50, felt fantastic and back to my old self for a week then bang vertigo drunk feeling back starting an hour a so after taking meds, palpitations really bad, dr did ecg said everything if fine and it’s the side effects, just ride it out and told me to alternate 50 and 25. So here I am nearly 12 weeks on this drug, crying daily because I’m so fed up, barely left the house for 3 months due to the dizzy feeling, unable to drive, can’t even cook a meal because I need to constantly sit down or lay down, please tell me this gets better because I can’t take it anymore

[cazmania7]

Sorry you feel so rough wwerty. I’m new to this site but I know the guys can help best when they can see your blood test results. Mainly the T3 T4 and TSH with reference ranges. Have you got that info? If not you might be able to get it online if your Drs has that service. Or they could print them out for you in the surgery. It is early days indeed but you probably haven’t been properly medicated yet. Might take some time. I hope you are feeling better soon

[cazmania7]

Just another thing, the swaying you mention and the ear problem, it’s probably all thyroid related but my mum has something called Ménière’s disease. Once you have your thyroid sorted (ish), if the dizziness is still an issue this might be something you could explore. But I’m by no means knowledgeable! I’m just another blob trying to get better lol

[Wwerty in reply to cazmania7]

The swaying thing has stopped now since they increased me to 50mcg which is good it’s this vertigo drunk feeling which I’m sure the tablets are causing. I’m fed up of trying to get better, before this I was such a different person, independent, out going, fit and healthy and fun, since starting these tablets I’m putting weight on everyday, can barely move from the sofa, crying all the time, it’s horrible, hope you feel better soon

[cazmania7 in reply to Wwerty]

I completely understand. I used to go to spinning classes. Now just the thought makes me need a lie down!!

[Mary-intussuception in reply to Wwerty]

Doubt that's the Levothyroxine as it doesn't work that fast. It's a replacement (synthetic ) hormone not a drug.

Check through the list of ingredients on the patient information leaflet and ask your GP if you could be allergic to any.

Try a branch of Boots pharmacy, try a different brands of Levothyroxine.

[pennyannie in reply to cazmania7]

Caz :

You are not a blob !!

[cazmania7 in reply to pennyannie]

Ha!! Thanks pennyannie! 👍🏻😂❤️

[greygoose]

Hi Wwerty, welcome to the forum. Sorry to hear you're having such a hard time of it.

First of all, levo isn't a drug - not in the normal sense of the word. It's a thyroid hormone, T4 - levothyroxine. It's the thyroid storage hormone that your body converts into the active hormone, T3.

Secondly, what you are experiencing is not side-effects of the levo - hormones don't have side effects - they are hypo symptoms. And, the reason you feel well to begin with, and then these symptoms return is that you're not on your right dose yet. That's the way it works. Your doctor was very wrong to start you on 25 mcg, it's not enough and very often makes people worse, rather than better. The normal starter dose is 50 mcg, unless you are very young, very old or have a heart condition. And he shouldn't have reduced it, He should have increased it. You should be on 75 mcg by now.

That said, some people do react badly to some of the fillers in the tablets. Can you tell me the brand of your tablet? Is it Teva? If so, a lot of people find they cannot take that, and have to change brands. There are several brands available so trying changing to something else, and see if it feels better.

Just a couple of helpful tips for taking levo… Take it on an empty stomach - either one hour before eating or drinking anything other than water, or two hours after - so you can either take it early morning or before bed. See which one suits you best. Leave a gap of 2 hours between levo and other medication or supplements - for some of them, four hours is necessary for optimal absorption.

When going for a blood test, make sure the appointment for the blood draw is early morning - before 9 am - and fast over-night. Leave a gap of 24 hours between your last dose of levo and the blood draw. These are patient-to-patient tips, and we don't discuss them with medical staff.

[Wwerty in reply to greygoose]

Thanks for the reply, I started on 25 mercury Pharma then in increased to 50 and currently taking Teva, I’ve been taking it at the same time every morning and leaving a good couple of hours before consuming anything other than water, my last blood test 4 weeks ago was first thing and I didn’t take levo before and tasted like you say as I’ve been getting a lot of useful tips off this site, this site as kept me sane, I’m only taking vit d which I take at night so well away from levo, I was diagnosed with slightly low vit d before thyroid troubles, you have made me feel a bit better with your reply, maybe I’m not going crazy after all lol

[greygoose in reply to Wwerty]

I seriously doubt you're going crazy! lol No, you're just under-medicated, and possibly taking the wrong brand. So, if I were you, I would try and get the brand changed, go back to 50 mcg, and try and get an increase as soon as possible to 75 mcg.

Does your GP only test TSH? If so, he's very wrong to do that. You cannot accurately dose a hypo patient on the TSH alone. The most important number is the FT3, but the NHS will rarely test that. But a minimum of an FT4 should be done - especially when your TSH gets down to one or under.

[soupybp in reply to Wwerty]

Consider moving your vitamin D to earlier in the day. It is a melatonin antagonist, so taking the D at night can affect your sleep adversely.

[Mary-intussuception in reply to Wwerty]

What dose Vitamin D are you taking?

You need a follow - up Vitamin D test.

Taking too much Vitamin D causes toxicity.

Could you take your Vitamin D with lunch? Night time is too late in the day. As long as it is 4 hours after Levothyroxine, that's fine.

[Wwerty]

Thanks, I think they only test tsh, I’m going to ring them today and find out, and if so I’ll pay privately for a full thyroid panel

[SlowDragon Administrator in reply to Wwerty]

Bloods should be retested 6-8 weeks after each dose increase in Levothyroxine (or brand change too)

Many people find different brands are not interchangeable and many people react badly to Teva brand, but a few prefer it. (It's the only lactose free brand)

healthunlocked.com/search/p...

if Teva doesn't agree with you, they are the only brand to make 75mcg tablet. So when dose is increased to 75mcg you can either get 50mcg plus 25mcg or just cut a 50mcg in half

List of different brands available in UK

thyroiduk.org.uk/tuk/treatm...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY 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 before eating or drinking anything other than water . 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).

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

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

50mcg is only a the standard starter dose of Levothyroxine

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)

Feeling drunk/dizzy is often low B12

[Wwerty in reply to SlowDragon]

Thanks for your reply, it’s all overwhelming this hypothyroidism, I’m going to speak to my gp and order blood tests

[greygoose in reply to Wwerty]

The problem is, GPs know next to nothing about thyroid. That is why they mistakenly think that testing TSH tells them all they need to know! This is why we have to learn about our disease so that doctors don't just get to fob us off. I know it's over-whelming in the beginning, but you'll soon get used to it. And, you can ask as many questions as you like on here, until it all becomes clear.

[SlowDragon Administrator in reply to Wwerty]

Are you still taking Teva brand?

This brand upsets many many people

A few love it .....but many become very ill on Teva