Side effect worries: Hi, I have just been... - Thyroid UK

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Side effect worries

BooBoo81 profile image
30 Replies

Hi,

I have just been recently diagnosed with an under active thyroid and have been given Levothyroxine 25mcg to start. Unfortunately, I suffer from severe and debilitating anxiety (GAD) and I am very anxious about starting them as there have been many reports of side effects from the meds being anxiety and irritability which I really can't afford to manage as I am really struggling to manage my anxiety just now. Any words of encouragement or comfort would be much appreciated?

Thanks

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BooBoo81
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30 Replies
Marz profile image
Marz

Welcome ! Low thyroid could be the cause of your anxiety - very common. Also when the thyroid is low then so will the following - B12 -Folate - Ferritin - VitD. They all need to be tested - again if low could be contributing to your symptoms.

Do you have your thyroid test results with ranges ? If so do post them here for people to comment.

25mcg is a very low dose - make sure you are re-tested in 6/8 weeks and have the dose increased .....

BooBoo81 profile image
BooBoo81 in reply to Marz

My Doctor didn't give me actual numbers of my levels so I am a bit in the dark!! I am already on meds for my anxiety so I am well aware of how keen doctors are to just thrust tablets on you. I guess I will have to do my own research on it and find out what's best for me as not in a good place at the moment. I am not very confident about going onto these tablets and I have been very let down in the past by my Doctors surgery.

Thanks for replying.

greygoose profile image
greygoose in reply to BooBoo81

That's why we're here! :D

Doctors very rarely just hand you your results, most of them would rather you didn't know! They don't like informed patients. Shows up their limitations. BUT if you live in the UK, it is your legal right to have a copy, so ask for a print-out. You don't have to tell them why you want it, but you could just say for your own records.

I'm afraid you don't have a lot of choice about going onto levo. You can't live without thyroid hormone - be without them for too low and you will go into a comma and die. You should at least try them and see how you feel. They aren't drugs! If people have side effects, it's due to the fillers, not the hormone. So, if the brand you've been prescribed doesn't suit you, ask for a different brand. But, to be honest, I've never heard of anxiety being one of the side-effects. It's a hypo symptoms, as Marz says. So, it's more likely to go away than to get worse, when you start levo. :)

Marz profile image
Marz in reply to BooBoo81

Please do ask your GP for the testing of B12 - Folate - Ferritin - VitD. They are SO important in helping you to feel well and for the hormones to work well in your body. We read every day here on the forum of the very many people that have low levels of these vitamins and minerals that the GP has not picked up - and many of them are handed pills for anxiety.

You are not alone - there are so many others on this forum suffering like you due to poor observations from the Docs. When your B12 is below 500 you can manifest with neurological symptoms - it is more than a Vitamin deficiency. Please scroll down in the link below to read the neurological issues caused by LOW B12 and the other symptoms. Take a look at the videos too - under the heading Films.

b12deficiency.info/signs-an...

Also I would suggest looking at the website of Kelly Brogan - who also wrote the book - A Mind of Your Own. You can sign up for her Newsletters. She talks about the diet and the mind as does Dr Perlmutter - a Neurologist.

If your GP is not co-operative in arranging these tests - they can be done privately through Thyroid UK. Home Testing Kits are sent to your home and very well used by members here.

thyroiduk.org.uk/tuk/testin...

When you have your results and ranges from your GP - go back a few years to see if your thyroid was missed in the past. We often read about that. Also post your results in a new post so more people see then and can offer advice.

nhs.uk/chq/pages/1309.aspx?...

The above link takes you to information about obtaining your records - your legal right :-)

Please keep asking questions and people here will support you .....

Wishing you well on your journey to wellness. Small steps ....

I would start the 25mcg - and book your next test for 6/8 weeks - when you will need an increase. Sometimes we can feel worse before we feel better - all part of the process.

Do you have Hashimotos ? Were your anti-bodies tested - TPO & Tg ?

Clutter profile image
Clutter

BooBoo81,

You would usually have to be over medicated on a high dose of Levothyroxine before it would cause anxiety and irritability. 25mcg is a low dose, the lowest dose you can be prescribed.

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

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

BooBoo81 profile image
BooBoo81 in reply to Clutter

Clutter,

I have been suffering with my anxiety disorder for over 9 years now and my thyroid was tested many times but everything came back normal. It is only recently I have been feeling so fatigued to the point of collapsing when the doctors decided to test me again.

I guess I was just wanting to hear some of those who have taken Levo and it has worked for them without feeling worse but maybe that's slightly naive of me to hope for.

My husband and two children are away to Grand Canaria but I am stuck at home due to my anxiety making it impossible for me to go. I am not looking forward to starting a new medication while it's just me and the dog in the house 😳

Thanks for the replies.

BooBoo

Clutter profile image
Clutter in reply to BooBoo81

BooBoo81,

You're not likely to feel anything straight away because it will take 7-10 days to absorb before it starts working. I doubt you will feel worse or find your anxiety increases on 25mcg.

BooBoo81 profile image
BooBoo81 in reply to Clutter

Clutter,

That does make me feel less anxious about starting them. I have stomach problems too so this also adds to the anxiousness of starting new meds. I will just have to start them and hope for the best. :)

lucylocks profile image
lucylocks in reply to BooBoo81

Hi

My daughter was suffering from hypo. symptoms for years, fatigue, anxiety, depression, freezing cold, and aches and pains. She had lots of thyroid tests and was told all was normal. She was finally diagnosed eight years after starting with the symptoms.

The thing is here in the U.K. top of the TSH range is around 4.5 but even then Doctors sometimes do not treat until it reaches ten. In some Countries top of the range is three so you will be treated when over three. This is why you can suffer symptoms for years before getting a diagnoses here, as you would be treated far sooner in the other Countries.

Your TSH was maybe over three for years, this is why you had symptoms, and it has been climbing and now it is over top of the range so the Doctor is now treating you.

I understand you being anxious about taking new tablets as I feel the same, but they really could help your anxiety and make you feel better.

Best wishes.

BooBoo81 profile image
BooBoo81 in reply to lucylocks

Lucylocks,

Thanks so much for your post. I just feel I need some positivity behind me, to get myself onto the tablets as the side effects you get with anti depressants are very intense and frightening but it has been said above that Levo is a hormone and not really seen as a drug.

Thanks

BooBoo

brighter84 profile image
brighter84 in reply to BooBoo81

There are plenty of people who take levo and are doing well on it, just many of them aren't on groups like this because they're out living life! Haha. The rest of us just have complications. Chances are you could take levo and start to feel much better. Just have patience and like others have said, get tested to make sure everything else in your body is adequate. Anxiety is a symptom of various deficiencies so it would be good for you to find out what your body has

BooBoo81 profile image
BooBoo81

Marz,

My antibodies were tested and they came back normal. I am guessing that Hashimotos is an autoimmune disease?? What are TPO and TG?

Clutter profile image
Clutter in reply to BooBoo81

BooBoo81,

TPOab = thyroid peroxidase antibodies.

TGab = thyroglobulin antibodies.

If your TPO was normal it doesn't conclusively rule out autoimmune thyroiditis (Hashimoto's) because some people are TPOab negative but are positive for TGab.

BooBoo81 profile image
BooBoo81 in reply to Clutter

Clutter,

I will try and get a copy of my results so I have a better understanding of what my levels are.

Many thanks to all.

Boo Boo

Boo boo: I understand how frightening this journey is. I'm also a newbie on the sight and have found it soooo valuable to help both educate myself, and to read of others experiences as well. I suffer from crippling depression and had been on aniptidepressants for years before diagnosis. I'm on natural Dessicated Thyroid and still trying to get to those "optimal" levels we seek here. (My recent setback was increasing my dose too quickly resulting in major anxiety and depression upswing, so the dose has been dropped back - just until I have some time to adjust then re-test levels. I found it interesting that my ferritin levels were very low and am addressing that issue). Be gentle on yourself. Use this sight to help yourself get a better understanding of what is happening to your body. And I hope you can see your levels change and your symptoms subside as treatment goes forward.

TJc64 profile image
TJc64 in reply to

Hello , did you try Levothyroxine before you tried NDT ? I was wondering if you thought it was better .

in reply to TJc64

Yes, I was on levo before NDT. But not for very long - after reading about NDT I was determined to try it. As a result I had an epic battle of wills with a nurse practioner here in Canada.. long story short - I won ;-)... so I can't really give a definitive comparison as my time on it was so brief. I wish I could give you a better answer TJ!

BooBoo81 profile image
BooBoo81 in reply to

Rusty64,

Can I ask what natural Dessicated Thyroid is and if you have ever been on Levothyroxine? I too had low ferritin levels but the doctor said that my haemoglobin levels were normal. I wasn't given anything for my low iron levels by the doctor but I do really suffer when on an iron supplement so need to some how find a way to increase my iron levels too. I was thinking on a liquid form of iron which I have heard can be kinder on the stomach. I feel like a walking disaster at the minute and just need to feel back in control of my health.

Thanks

brighter84 profile image
brighter84 in reply to BooBoo81

Some people rate Floradix highly, may be worth looking at.

in reply to BooBoo81

See my other reply about NDT comparison... NDT - wow there's no short answer here so I will post a link or 2 to best help you get that info. But def do a search here also as there are scads of posts discussing this treatment alternative to synthetic thyroid. As for iron - from what I have read (here of course) is that the correct form of iron is critical to tolerance, as well as taking Vit C with it to combat the adverse affects on your tummy. (I'm picking up some ferrous fumerate (200 mg) and will take with 500 Vit C at least twice a day to give my levels a boost). Again search here for "ferritin levels" to read tons of posts with comments on dosage, forms, etc. Are you taking selenium? B12? D3? These are other supplements that are discussed here as vitally important. Again read, read, read! It does help to arm yourself with the knowledge to empower yourself on this journey.

stopthethyroidmadness.com/n...

stopthethyroidmadness.com/f...

Silver_Fairy profile image
Silver_Fairy in reply to BooBoo81

Or Spatone. Or liver 🙂

TJc64 profile image
TJc64

Hello , I just want to let you know you are not alone. A lot of people on this site suffer with anxiety, me included . I urge you to take their excellent advice . I know how scary it is . Starting a new medication. Once It took me 6 weeks to buck up the courage to take a new pill . You are desperate not to do anything that will increase this awful living nightmare that you endure every day . Believe me I know . However it is most likely that you will feel better . Not worse and you want to feel better don't you ? The symptoms of Hypothyroidism are only adding to your anxiety as you have probably been worrying about them too. I would urge you to get some Vit D in a spray from Holland and Barret or Amazon. It may help as it is most likely you are deficient . Also have you tried anything to help with your anxiety? Like CBT .

If not I can recommend a book called DARE by Barry McDonagh . A lot of people get better using this method . Unfortunately there is no magic pill to get rid of anxiety. If there was I would have definitely found it 😀However starting Thyroxine may help a bit .

BooBoo81 profile image
BooBoo81 in reply to TJc64

TJc64,

I was under the misguided assumption that it was only Hyper sufferers that struggled with anxiety symptoms and not those suffering with Hypothyroidism. I have tried many different avenues for my anxiety like CBT but that was some years ago now and find that the journey I have just to attend CBT therapy is so difficult with the kind of anxiety I struggle with. I have tried an occupational therapist and CPN's to support me but at the moment, I receive no mental health support as the service is so stretched, they are unable to accommodate my needs long term so I basically manage it on my own with the help of medication. I really do want to feel better and I just hope I can with these new meds.

Thanks

BooBoo

TJc64 profile image
TJc64 in reply to BooBoo81

I too have tried therapy in the past and like you was under the impression that it was only hyperthyroidism or overmedication that caused anxiety. Since joining this site I have learnt otherwise. I am seeing my Endocrinologist on Friday to see if I can get some T3 as advised by the other members here. Like you I try to manage the anxiety without much success. I just live with it the best I can . I have increased my vitamin D and seen a Functional medicine doctor. I am physically better but the one thing I can not get rid of is the anxiety. I think we get so used to it being there we forget what it's like to be without it . This is not a way to live and we need to get better . You can PM me if you like and I will help if I can . We all want to feel better

PS: don't forget: especially read #2 under "7 reasons low iron can be a problem for Hypothyroid patients" under that link I gave you to "Stop The Thyroid Madness" site. And cortisol levels have a massive impact on mental well being/our inability to cope with stress as well! Do you have the means to get those levels tested? (I'm taking Rhodeola and Ashwangandha to give mine a leg up).

stopthethyroidmadness.com/a...

stopthethyroidmadness.com/2...

BooBoo81 profile image
BooBoo81 in reply to

Rusty64,

As I am in the UK it can be a huge hassle to request certain tests if they have not been suggested by your doctor which means you may have to go private. I did note that thyroid uk does do their own testing which may be worth looking into. I will see what my results say first as it has only been 2 weeks since I had them done.

Thanks

BooBoo

Make sure to start a new post when you get those results OK.

XX

Rusty

Binky45296 profile image
Binky45296

Hi before I started on levothyroxine my anxiety and panic attacks were awful to the point I left my job as I just couldn't get in, eventually my tsh level rose quite significantly and they put me on Levo, must admit after a week I was much better. I was nervous taking them but it was the best thing that could happen to me. Although I have fluctuations of feeling good and feeling low when my anxiety returns it's in no way as bad as it was.

BooBoo81 profile image
BooBoo81 in reply to Binky45296

Binky45296,

Thanks for your reply. I still haven't started them through fear of it worsening my anxiety. I keep setting myself a day but I just chicken out!!! I really must start soon. The pressure on me is unbearable. Thanks

Karolly profile image
Karolly

Hi BoBoo81,

Please don't worry, I have GAD too and I'm taking Levthyrocine, 100mcg. You will notice such an improvement now you have started on Levohyrocine. It hasn't affected my GAD, I've also

Been diagnosed with M.E & Fibromyalgia so I have all sorts of health issues. Just try to relax and let the

Levothyrocine help with your Thyroid issues.

Try some relaxation if you can

Hope this has helped

Karolly 🙋🏻x

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