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Original poster

Starting levothyroxine

40 replies

Pannalash · 20/04/2017 19:14

I'd be grateful for some advice. I have been given 25mg levothyroxine for an underactive thyroid and am really anxious about starting it. I suffer from really bad anxiety at the best of times and I understand that in some cases it can cause palpitations which I get sometimes anyway and always freak me out. I'd really appreciate it if you could let me know how you felt initially on levothyroxine. Also quite dizzy at the minute with intermittent vertigo which is worse when I'm anxious could levothyroxine make this worse? Thankyou

OP posts:

witwootoodleoo · 20/04/2017 19:22

I started on 50mg about two months ago and haven't had any side effects. 25mg is a very low dose so you'd imagine you'd be unlikely to have side effects

MichaelSheensNextDW · 20/04/2017 19:25

I didn't feel any different at all on 25mg, I'm now on 100mg and haven't had any side effects at all. You're unlikely to experience any because it's simply replacing what your body should make naturally. Hypothyroidism causes anxiety so you may find that improves over time.

corlan · 20/04/2017 19:28

It's a low dose so hopefully you'll be absolutely fine.
I'm on 100 mg and have never had side effects.

Bebraveagain · 20/04/2017 19:51

Yiu shouldnt have a problem on that dose as it so low. Some people do feel eorse on such a low dose though. It'll need checking and increasing every 6 weeks until you are optimally medicated.
Your thyroid could be the cause of your anxiety. The link below is helpful for advise.
healthunlocked.com/thyroiduk

Crumbs1 · 20/04/2017 19:53

Taking thyroxine is a non issue. Once levels balanced you should feel better. It's not something to fret about.

zen1 · 20/04/2017 19:56

I started on 50mg and noticed no benefits or effects. 5 years later I asked GP if I could increase the dose the 75mg. That was several months ago and I still haven't noticed any different. 25mg is a very low dose.

zen1 · 20/04/2017 19:56

*to 75mg

gonegrey56 · 20/04/2017 20:42

I am on 100 mcg and have never had any adverse symptoms. You are on a very low dose .

tanyadm · 20/04/2017 20:49

I'm on 175mcg a day, there are no side effects, it just rebalances your levels. If it helps comfort you, my 7 year old daughter has been on 25mcg a day for six weeks. It really isn't worth your anxiety.

Itmustbemyage · 20/04/2017 20:57

I'm on 150mg.
25mg is a very low dose just to start you off with, it will be increased til you get the dose that works for you.
I had no symptoms when I first started taking it. I have been on it for years never had palpitations.
You will feel a lot better when your hypothyroidism is being properly treated, embrace the medication! The most common problem people have on levothyroxine is that the dose prescribed is too low and their symptoms are not being adequately treated.

Original poster

Pannalash · 20/04/2017 23:03

Thankyou all for taking the time to reassure me. I'm just terrified that palpitations will turn into my heart stopping but that's my anxiety talking. My TSH is very high at 20 but my t4? has been borderline. My symptoms are cold hands and feet, memory problems which I know are related to the thyroid but also get vertigo and severe anxiety which may be related to the underactive thyroid did anyone have any of these symptoms which resolved after taking the thyroxine? Also did any of you have palpitations which stopped on medication. As well as being anxious I do feel a bit overwhelmed at the thought of having to take medication for life.

OP posts:

Crumbs1 · 20/04/2017 23:21

But on the plus side, free prescriptions!

Bebraveagain · 21/04/2017 09:07

With your TSH that high, your thyroid is really struggling. Make sure you book a retest for 6 weeks time. I had palpitations which have almost stopped now Im on thyroid meds. I think they'll go completely when im optimally medicated. It takes a while to get meds right for you.
Your other symptoms are classic underactive thyroid symtoms.
Do you know if you have Hashimotos? You'd need your antibodies checked.
You also need your ferritin (stored iron), B12, vit D and folate checked. We thyroid sufferers tend to be low on those which makes symtoms worse and makes it difficult to absorb levothyroxine.
Your levo needs to be taken one hour before food or 2 hours after food for best affect and 4 hours away from any iron supplements.
As everyone here has said, 25mg is a low and ineffective dose, but it can only be increased slowly while your body gets used to it.
I felt even worse on 25mg but started to feel better on 50mg.
You need to get your TSH to around 1 and your FT4 in the upper quarter of its range.
If you can get a referral to an Endocrinologist, they will advise better than a GP and they can test FT3 which is another important test that GPs don't do.
You must feel really dire with a high TSH and low FT4 and Total T4.

MichaelSheensNextDW · 21/04/2017 12:54

OP just a quick note to say the latest NHS figures show that 15 in every 1000 women in the UK currently need to take levothyroxine. There are lots of us

TinyTear · 21/04/2017 13:03

I take 125/100 on alternate days
No side effects but i do note if i miss a dose

Bubbasmama2017 · 22/04/2017 06:46

I'm taking 75mcg (upped from 50mcg) because it dropped now I'm pregnant. I also have vertigo made worse by anxiety and the levothyroxine doesn't seem to have made any difference to it, sorry. I haven't found anything to help it other than maybe cutting out caffeine and alcohol.

MiniMaxi · 22/04/2017 06:57

Hi OP, please don't worry. I've been taking Levo for about 20 years with no ill effects. My dose is much higher than yours!

Actually I find that when my dose needs adjusting upwards, I get palpitations - so you might find it actually helps yours.

Original poster

Pannalash · 22/04/2017 09:33

Thanks again for taking the time to reassure me. The thing is Bebrave that I don't feel dire and that is one of the reasons I'm struggling with the thought of medication.
Thanks Michaelsheens
Bubbasmum sorry you have anxiety related vertigo it's awful isn't it, I was just worried that it may make it worse.
Minimaxi glad you get on well with the meds.

OP posts:

debska · 22/04/2017 18:57

Has anyone had a total thyroidectomy? I had mine removed last year because of thyroid cancer and ive been on 125 Levo since march. Feeling very hypo . Just checking to see what doses people are on who haven't got a thryoid gland.

MichaelSheensNextDW · 22/04/2017 20:50

I haven't had a thyroidectomy but the key seems to be to find a gp or endocrinologist who prescribes according to symptom relief rather than just getting a test result 'in range'.

Most people need their TSH to be 1 or less and T4 in the upper part of the range. Many gps will see a TSH of say 3 and believe that's fine because it's within the range of 0.5-5. In fact the pituitary should be producing hardly any TSH at all - this indicates it's detecting an adequate level of T4. Again, many gps will say a T4 level of 13 is ok when the range is 12-22. (NB - reference ranges vary a little according to different NHS trusts).

It's also common to be symptomatically deficient in various things as being hypothyroid directly affects your level of stomach acid and therefore absorption of nutrients. Getting folate, Vit D, B12 and ferritin optimised will help how you feel.

Some people cannot adequately convert T4 into the active molecule T3 - this would be looked at by an endocrinologist and is uncommon but should be considered if you don't achieve improvement with T4 only.

EggysMom · 22/04/2017 20:56

I don't feel dire and that is one of the reasons I'm struggling with the thought of medication.

I didn't feel bad either - at least, not from the hypothyroidism, I actually went to the GP because I was in my second week of flu and needed a fit note! Because others in my family suffer from thyroid issues, he took a blood sample and ... the reason I couldn't shift the flu was because my thyroid was struggling ...

I'm now on 75mcg Levo. I know when I haven't taken it, so I guess it's doing something Every time the GP sees me, he asks if I'm feeling better; problem is, I didn't know I felt ill in the first place!

Womble75 · 22/04/2017 21:02

I'm on 200 and feel ok but I do notice it if I forget a dose. I started on 25 a few years ago and didn't notice any side effects. I take mine first thing as I started off taking it at night and could never get off to sleep. As others have said get tests repeated after 6 weeks. TSH of 20 is quite high though.

Crunchyside · 22/04/2017 21:10

25 is super super low! Have you even seen those pills?! They're microscopic, smaller than contraceptive pill! And I don't even view them as medicine/drugs in the traditional sense, like a PP said they're just a hormone that your body should be making anyway.

I had the option of starting Levothyroxine when I was first diagnosed with a slightly underactive thyroid, I was only 19 and it was only on the borderline. I said yes because I knew that it can improve your quality of life in lots of small ways - energy levels, weight etc. They started me on 50 even though I was borderline and that's what I've been on ever since so I really don't think you need to worry about 25! They will keep a super close eye on your levels with blood tests so they would know if it was too much for you.

IMO it's always better to have it treated because underactive thyroid can cause so many other health issues if untreated. Anxiety, weight issues, cholesterol, all sorts.

MiniMaxi · 23/04/2017 09:21

Debska, I haven't had a thyroidectomy but I take a suppressive dose as I have autoimmune thyroiditis. I'm currently on 150mcg daily.

By the way I was advised by endocrinologist to take pills very first thing - before any tea, toast etc - as milk and food interferes with absorption.

debska · 23/04/2017 12:40

Thanks minimaxi. I take mine first thing too. I'm sure I'm not taking a high enough dose as my tsh is supposed to be suppressed to as to zero as possible and it's 2.2 ATM

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