Anxiety after TT

I had a Total thyroidectomy in August 2013 after being diagnosed with Graves' disease shortly after giving birth to my son (think I've had an overactive thyroid for years). My levels are within "normal" range on 125 mg of thyroxine but I have periods of depression whereby I am very tearful, anxious and have no concentration. Can't seem to shake myself out of it and work is suffering as a result - what can I do to help myself? Does anyone else feel like this? (I was never like this before my TT)

Thanks for any help


15 Replies

  • Hello Bradley

    I am sorry you are finding things very difficult at present. It is bad enough just having hypothyroidism caused by an autoimmune condition where we may have some thyroid function left but it must be worse due to the fact they have removed your thyroid gland altogether. Trying to get your levels up to a normal (optimum level) must be hard going. We are prescribed levothyroxine as that is what the guidelines dictate. I don't agree that a person who has TT is only given levothyroxine. First, you may not convert levothyroxine into a sufficient amount of T3. T3 is the active hormone which drives our whole body's metabolism and without enough we suffer.

    Never take the word 'normal' in regard to a thyroid hormone blood test. Always ask for a print-out from now on with the ranges. Post on a new question for members to comment on them. It is amazing that, despite an Endocrinologist in the British Thyroid Association stating that we should have sufficient levothyroxine to bring our TSH level down to approx 0.2 to 0.5 many don't listen to or know clinical symptoms which you are having at present. All of these sensations are usual when we aren't either on the correct medication or sufficient amount.

    When you next get your thyroid blood tests, get the earliest possible appointment and don't take levo until after it. It can skew the results. Take levo first thing with a glass of water and don't eat for around 1 hour. If you take medication/supplements I wait for 4 hours between taking levo and the supplements.

    I think the very least the doctors can offer you is levothyroxine plus some liothyronine (T4 and T3). Ask at your next appointment. T3 has to enter and saturate each and every receptor cell of which we have bilions and our brain contains the most. Get the same make of levothyroxine each time as some are slightly different. If after a while you don't feel particularly well ask chemist for another make and see if this is any better.

    We have to read and learn as much as possible. You may now have realised that when the word 'normal' is used they are not really interested on what is happening to the patient. Clinical symptoms may well be treated as 'something other than thyroid hormone related' and given a medication for the symptom rather than increasing levo or T3. p.s. some psychiatrists use T3 for their depressed patients.

    I hope you feel better soon. Ask your surgery for the latest print-out of your blood tests and post them.


  • Thanks for the reply

    I asked my endo previously about taking T3 but he stated there was no medical evidence that it worked any better than throxyine alone - not being clinical I couldn't argue with him. I do agree through that they treat you according to the results and don't listen to the patients and their symptoms - how do they know a "normal" result is "normal" for everyone

    I'm at a loss at what to do but know I can't go on like this - considering asking for anxiety medication to see if that helps

    Thanks xxx

  • No wonder I get irate, they talk rubbish. I am on T3 alone, haven't had a thyroidectomy - could not cope with levothyroxine. I was far more unwell on it than I was with an undiagnosed hypo and a TSH of 100.

    What did they tell you before they removed your thyroid gland? Did they tell you of the consequences. Of course if you had cancer of the thyroid gland that's a different story.

    Did they tell you that taking a synthetic thyroid hormone would make you feel the same as your did before? I suggest they have their thyroid gland whipped out and have a real experience they can really share with their patients.

    You are learning, you will soon know much more than any Endocrinologist. The thing is many are left to suffer told they have this, that or the other except they forbid the use of natural dessicated thyroid hormones on the premis that it is unreliable etc etc. Untrue. One in particular has been in production for 75 years with a consistent T4 and T3. More than you can say for levothyroxine which has been withdrawn quite a few times for its inconsistency. A Natural Dessicated Thyroid Hormone contains, T4, T3, T2, T1, and calcitonin so would Mother Nature give us these for no reason? So, they give us levothyroxine T4 alone (and many appear to do well on it) but some of us don't which should convert to sufficient T3 but many do not. Some people have been in hell for umpteen years, no connection to the internet, lives ruined.

    They don't read research, or read only what they want to and make interpretations that suit them.

    One of our admins who has had a TT is on T4/T3 and feels much better on both.

  • Thanks for the information

    I am due back at the hospital in January (although only seeing the specialist nurse) but will ask to be ask again at the medication. I perfume it can be prescribed on the NHS?

    Thanks for the information, really appreciate the replies xx

  • T3 can be prescribed by the NHS and they usually reduce the levo by around 50mcg and add the T3. So I hope they do that. They may sound a bit reluctant but stand your ground without being demanding. Say, all you want is a trial as you have now been on levo for more than 1 year and have a child to consider as well as yourself and still don't feel optimally medicated even if you bloods infer you are on the right dose. Email tomorrow and ask for a copy of the Pulse Article and read question 6 and take this with you to your appointment, pointing out to what level your TSH can go or even suppressed. I just wonder if your GP would be willing to prescribe, maybe not as you are under an Endo but worth asking, especially if you show him the Pulse article.

  • Thanks for this x

  • I always remember when I had my to that I was feeling depressed at times my gp at the time, really good gp wish she hadn't retired, prescribed me an anti depressant for a short time. She described that it was like being pregnant and no baby at the end, sorry for the analogy. Because the hormone levels are high and then they are quuckly reduced it quite often has this affect. I took them for a short period until my thyroid and life balanced out. My tt was about 18 years ago and I have been lucky I have only ever taken levo and I have more or less taken the same dose for all these years (150-200mcg) highest being when I was pregnant. The endo reckoned that I had been over active for about 10 years before my diagnosis, this was due to the symptoms and previous tests that were on my notes.

    Maybe that you had recently given birth before your tt has made your hormone levels worse and this could be why you are feeling they way you are.

    Good luck

  • Thanks for your comments, really appreciate it! Think I need something to help me as cant go on like this xx

  • Just spoke to my GP (what a complete waste of time), I asked about antidepressants to help until I can get to the hospital and she said any type wouldn't help in the short-term therefore wouldn't prescribe it. I also asked about the T3 meds and she said changing my medication wouldn't help - don't know why I bothered! Not further forward with anything!!!

  • Is there another gp in the practice you could see. I found in my practice I have worked my way round them all and have found 1 that I like and seems to help although touch wood I haven't been with my thyroid yet.

    Hope you get something sorted soon x

  • If you aren't currently taking any anti-depressants of any kind then you could consider taking 5-HTP or St John's Wort. Neither of them require a prescription, you can buy them over the counter. I've never taken St John's Wort, but I've been taking 5-HTP very successfully for several years now. I buy them from Holland & Barrett in 50mg capsules. I usually take just one a day, about an hour before bedtime, although very occasionally I increase to two - one early evening and one late evening. Some people take lots more than me. I've come off them a few times for a week or two and I don't get any withdrawal problems at all. 5-HTP doesn't work for everyone, so if you haven't noticed a benefit within a week or two, you may as well stop taking them. If this interests you, buy the smallest bottle you can to begin with because of this.

    Don't mix either of the supplements I've mentioned with anti-depressants of any kind, or with each other.

  • I ended up phoning the hospital myself and they have pulled my appointment forward to Monday 8th December - hopefully will get something sorted then x

  • I had terrible problems following TT and am now having a trial of T3. It has amazed me that so called experts seem to have so little understanding of the difference between them and seem to suggest it's your own fault if T4 does not work for you. I was lucky that I didn't suffer the anxiety which I think Drs get hung up on and though anti-depressants must help they don't get to the root cause. I suffered terrible cramps and muscle weakness on T4 and was offered anti-depressants - don't see how they would help cramp! I even had cramp in my mouth which has pushed my front teeth together - I used to have a gap which is now not there. Don't see how ant-depressants would have helped that!

    I am afraid I just kept bugging the Drs saying when I am well I will go away but until that time I am afraid I will keep coming back. I got an endo recommendation from somebody on this site and asked for a referral to him. Although I am not optimally treated yet I noticed a difference within a few days of taking T3. I am glad you have an early appointment and will keep my fingers crossed for you.

  • Thanks Debjs! Hopefully they can start me on some T3 and then I can start feeling better! The red eye look is doing nothing for me

    This site is really helping though, wish I'd found it ages ago xx

  • Just been to the hospital and almst begged to be given the T3 meds and the Consultant agreed for me to trial it! Thanks for the advice on here! Hopefully it will start to feel better now x

You may also like...