Anxiety?: Hi everyone This is my first post. I... - Thyroid UK

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Anxiety?

Mel74 profile image
20 Replies

Hi everyone

This is my first post. I am just wondering if anybody has any history of anxiety being linked to their thyroid medication.

I had a total thyroidectomy 10 years ago due to thyroid cancer. I have been taking 1000mg of levothyroxine for the last 8 years. 3 months ago my endocrinologist reduced my dosage to 800mg per week as she said my level was too high . She also found a lump in my neck but didn't seem too concerned however over the next 6 weeks it set off a series of ultrasounds and eventually a MRI of my neck. I was extremely worried about this and was highly anxious about whether or not I had cancer back.

I have no prior history of anxiety or depression, although I think I am going though menopause as well.

The day before my MRI I was extremely agitated and got a sensation that I could not breathe. I had this a couple of days in a row even after I got the all clear from the MRI. For the last two months I have continued to feel short of breath every day for periods of time with increased levels of agitation and low mood. My GP wants to put me on an anti depressant however I am wondering if it could be related in part to my medication levels. I had my levels tested again 3 weeks ago and they were

TSH 0.02

T3 4.1

T4 20

Any thoughts???

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Mel74
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20 Replies
Nanaedake profile image
Nanaedake

Have you got laboratory ranges for the blood tests? Do you really mean 1000mg or do you mean 1000mcg? That is a high dose for most people but without lab ranges, we can't see if the test results are in range or not.

Has your formulation of levothyroxine been changed with the change in dose?

Anxiety can be a symptom of thyroid over or under activity and it can be related to changes in thyroid hormone status or some people react to a change in make or brand of levothyroxine.

A change in thyroid hormone status from 1000 to 800 units could cause symptoms but because the units are unusual for me I can't work out how much of a change it is. In the UK levothyrxoine is measured in micrograms and the recommended change in dose is 25 mcg or less if it needs to be adjusted for someone without a thyroid and no antibodies. As you don't have a thyroid you may be very sensitive to changes.

I would hold off anti-d's until you get to the bottom of what has caused the anxiety otherwise you add another layer of complexity to the mix. You really need to have your vitamin levels tested too just to rule out low nutritional status.

Mel74 profile image
Mel74 in reply to Nanaedake

Sorry, yes it is micrograms. I have been taking the same tablet/ brand since my thyroidectomy ( eutroxsig).

Mel74 profile image
Mel74 in reply to Mel74

I have no idea about lab ranges??? I have never been shown the results, just told whether they are a bit high or okay.

As you can see I don't know too much about my thyroid as I have always felt fine until recently and wondered if it could be connected or if I have just developed anxiety with constant shortness of breath due to a highly stressful event ( I wasn't eating or sleeping well before my MRI and was super worried)

Thanks for your reply. It is appreciated!

Nanaedake profile image
Nanaedake in reply to Mel74

Are you in Australia? I think the main levothyroxine is eutroxsig? Well 1000mcg is a huge dose but 100mcg is a rather small dose as you have no thyroid so I think you need to check the dose first and let us know what it is.

Then you need to get a copy of your blood test results. If in the UK we are entitled to them but I don't know about where you live. When you get the results, make sure you get the lab ranges too. If you post the results here, people will help you make sense of them. Laboratory ranges vary from lab to lab and country to country so you need to give us that information to help us interpret them.

I had anxiety and breathlessness with rapid changes in thyroid hormone due to the lack of bioequivalence between brands. It's likely the change in hormone levels have set off your anxiety. Unfortunately, once it's been triggered it can take quite a while to settle down, even if you went back to your previous dose. So you might have to try some relaxation or hypnotherapy to settle it down again. Your doctor could prescribe betablockers but they will make your levothyroxine less effective and may cause another swing. Also, they can have side effects too, I had joint and muscle pain from them.

World Health Organisation WHO, states that levothyroixine causes panic attacks and recommends that this iinformation is included in patient information leaflets that accompany levothyroxine, however, I don't think this has been implemented. Read page 23. for the item.

apps.who.int/medicinedocs/d...

Taking anti-d's won't help either because it won't address the cause. The best thing you could do is get your vitamin levels tested. They all need to be mid-range and B12 needs to be top of range for our levothyroxine to work well.

Vitamin aborption is a problem with thyroid conditions as hypothyroidism affects the gut. You might need to look into how to correct any stomach acid dysfunction.

Do you take any other medicines as you need to rule out that they may be giving you side effects too.

Get vitamins tested:

B12

Vitamin D

Folate

Ferritin

You may not be vitamin D deficient if in Australia but if you use suncream with a high factor and cover up in sun then it's still possible.

Mel74 profile image
Mel74 in reply to Nanaedake

Thanks so much, I will try to get this information next time I go to my gp....

I will try to find some of these vitamins to supplement. I did ask the gp to have my blood tested for vitamin deficiency a few weeks ago but she was reluctant. I have just started yoga this week. I would really like to avoid the anti depressants if possible.

Thanks so much for your insight.

Nanaedake profile image
Nanaedake in reply to Mel74

Make sure you get blood test before you supplement. because it's important not to go over range with vitamin D and Ferritin, for example. If your GP won't do them you can use an online lab. There is info on the Internet about Thyroid conditions linked to vitamin deficiencies to show GP.

If you find you're low in vitamin D then it's D3 you need along with cofactors vit K2-MK7 and magnesium.

Mel74 profile image
Mel74 in reply to Nanaedake

I will do this. Thanks so much!

Mel74 profile image
Mel74

Yes sorry, my tablets ( eutroxsig 100 micrograms). I am in Australia, my doctors ( endo and gp) have never given me a copy of my results. They just tell me if they are okay or not..... always been okay until a few months ago, hence the reduction. I did see on the gp's computer screen that the tsh and t4 were both coloured red whilst the t3 level was printed in black. I'm not sure if that means anything or not....

Nanaedake profile image
Nanaedake in reply to Mel74

Without seeing results impossible to say. It's FT3 or Free T3 that is the important hormone to measure. I'm presuming you mean FT3 but there is so much information missing here that it's impossible to give good advice or suggestions.

JMTS profile image
JMTS in reply to Mel74

I am in Australia and my GP always gives me copies of my blood tests - You are entitled to have them So ask for them. I have always taken Thyroxine. I really find it amusing as nearly all the side effects that are written on the Thyroxine and Eutroxsig pamphlets I suffer from - which I find interesting . The tests I have done regularly are Free T4 - TSH - and Free T3.

Mel74 profile image
Mel74

I guess I need to ask more questions from my endo as to my condition and what she is actually measuring in regards to tsh, t4 and t3.

I now take 800 micrograms over the week instead of the 1000 micrograms that I was taking (Mon/ Tue 150, wed/thur/fri/sat/sun 100).

Thanks for trying to help.....

silverfox7 profile image
silverfox7

Just guesswork as we haven't got the ranges but the FT3 could be low hence the red and the FT 4 could be on the higher side so black but this is purely guesswork but if that's the case then the lad doesn't like your TSH which may send out alarms in the uk as well but no one should be medicated according to their TSH as once on medication it is unreliable unless it's showing a very high reading. You may find it useful to look at the site of Thyroid Uk who run this forum as I'm sure that with help you to understand more.

MaiteFrench profile image
MaiteFrench

Hi, I had a cancer too and thought I was alright for a long time but now my health is going wrong in so many ways with anxiety and panic as well as so many other things. So I have done a lot of research and I can only advise you to do the same. You can't blindly trust doctors or specialists. You have to know exactly what is happening and get your results. We are all different so them telling you that everything is fine according to the books doesn't mean that it is so for you. You are not a book. For the depression feeling Vitamin D is usually the root of the problem. Anti-depressants will only make you feel worse. Vitamin B12 and magnesium are necessary too. Are you anemic? Have any of your doctors checked all of that? You can't get another thyroid cancer since your thyroid was removed. What about your para-thyroid? You do need to search for yourself without waiting for the doctors who follow the rules not the need of the patient. Good luck.

Nanaedake profile image
Nanaedake in reply to MaiteFrench

MaiteFrench I hope you're starting to feel a bit better??

MaiteFrench profile image
MaiteFrench in reply to Nanaedake

A little bit thanks to self medication with vitamins but there is more to it and I need to see a specialist in hormones. There is only one in the UK so that is easy.

Mel74 profile image
Mel74 in reply to MaiteFrench

Thanks for your reply.

My doctors have not checked for any deficiencies for anything. When my bloods are taken it is just tsh, t3 and t4 levels. For the last 5 years they have only been taken once a year! I asked for the one a few weeks ago due to the medication level change and the major anxiety/ panic/ shortness of breath as that was the only thing that had changed recently and I am on no other meds.

I have made an appointment to see my endocrinologist for December 12. Couldn't get in any earlier.

I will ask my gp to do the blood tests for everything suggested.

Mel74 profile image
Mel74 in reply to MaiteFrench

Hope that your symptoms improve quickly!! I hate feeling this way too. Best wishes

MaiteFrench profile image
MaiteFrench in reply to Mel74

It takes a while but as long as you take your own health in your hand and listen to your body, you're in the right. Don't let anybody and certainly not the doctors, dictate you anything. Trust in yourself. You are the only one to know yourself. Good luck.

shaws profile image
shawsAdministrator

I have a thyroid gland which isn't working properly and was even more unwell on levo than before being diagnosed.

As you have no thyroid gland at all, I believe that every person who've had their gland removed should either be prescribed T3 (liothyronine) to their T4 (levothroxine) or prescribed NDT (natural dessicated thyroid hormones) which contains all the hormones a healthy gland would have produced. i.e. T4, T3, T2, T1 and calcitonin (good for bones) or T3 only.

NDT was in use in various forms from 1892 (which prevented people dying an awful death) up until a few years ago when it was decided, by those who should know better, that levothyroxine only would be prescribed. However T4 alone doesn't suit everyone as it is a synthetic form of T4. (It should convert to T3 ) but may not always do so sufficiently. T3 (liothyronine) is the only Active thyroid hormone and is required by the billions of T3 receptor cells in our body we cannot function without sufficient.

I only recovered and am now symptom free with T3 alone. Just recently they also withdrew this and the perfect excuse was that it had risen exorbitantly in cost which left many patients distraught and upset that we now have a Petition going forward.

Breathlessness (a scientific fact) that it is clinical symptom most probably due to insufficient T3.

You need a brand new blood test. Probably GP wont do all of the following and if you can afford it you can get the ones he/she wont do privately.

All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo and the test and take afterwards.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Your GP should definitely do the following, B12, Vit D, iron, ferritin and folate.

When you post results you also have to put the ranges as it enables members to comment upon your results (labs differ in their ranges).

I would suspect that your TSH is above 1 when it should be 1 or below and Free T4 and Free T3 low when both should be towards the upper part of the range.

When optimally medicated (which means removal of all clinical symptoms) we should have none and feel well. You can now tick the ones you have and I think it will be more than a few on the following link:

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

Mel74 profile image
Mel74 in reply to shaws

Wow, thanks for the link.... I certainly tick a lot of those boxes!

I will ask my gp for the blood test. They believe me to be overmedicated, but is it possible that the reduction in medication level has made me under medicated?

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