Next step?

Hi. I was diagnosed with an overactive thyroid 2 years ago. I was successfully taking a course of block and replace therapy medication. The meds worked fantastically and 7 weeks ago my consultant chose to take me off them completely to see how my thyroid reacted. I was opposed to this as I was feeling great but I realise taking me off them was the only way to see if I was cured. My bloods are currently as follows: TSH 1.63 (0.20-6.00) T4 13.5 (10-20) and T3 4.3 (3,50-6.50). So based on the reference range in the brackets that is what the NHS state is as normal I believe. On the whole I have no symptoms other than an underlying anxiety and nervousness that I only ever experienced before I was diagnosed and treated for hyperthyroidism. So if my ranges are considered to be normal why has this returned? I didn't feel nervous about coming off the meds, quite the opposite I was positive. But this feeling is not right. And again I can state that it was a feeling I have only experienced just before being diagnosed. I'm due to see my consultant next Monday but he is often very much of the opinion that if my bloods look good and within range it's unlikely to the thyroid. Can anyone offer some insight on this if poss? Many thanks.

25 Replies

  • William, you definitely aren't hyperthyroid with those results. It takes 8 weeks to clear Levothyroxine from one's system so I imagine it will be similar for Carbimazole. Your FT4 and FT3 are low in range which may be due to residual Carb in your system and may be why you're feeling a little anxious and, if that is the case, you may feel less anxious when your FT4 and FT3 are higher in range.

    I think your endo is unlikely to discharge you until you've been in remission longer than 7 weeks.

  • Clutter I was discharged after being off block and replace for only 6 weeks with only a TSH result !

  • P1pp1ns, that's dreadful :x

  • I know and I aint going back there! X

  • How are you now?

  • Carbimazole metabolises quite quickly. That is why some people are advised to split dose with it.

    Mind, its effects on the body will take much longer to stabilise.


  • Hi William, I am in a similar position to you , I came off bnr 10 weeks ago.Were you are bnr for 2 years? Just asking as I was only on it for 9 months.For the first 6 weeks off meds I felt anxious and had palpitations but now they have much improved so maybe you will too soon.Would you believe I was dicharged without at3 and t4 blood test.Its disgusting .Hooe you feel bettercsoon

  • I'm pretty much the same, I stopped B&R a year ago. My TSH has crept up to TSH. 1.5 (0.35-5.5) FT4 15.4. (10.00-19.8 similar to you. I know my body felt better before I stopped TSH was 0.56, T4 17.4

    I've been able to feel my heartbeat but not the way it was when I was diagnosed. I sometimes feel as if I am a bit shaky but again not like before and my pulse is reasonably slow - resting tends to be in the 60s.

    TSH. 1.5 (0.35-5.5)

    FT4 15.4. (10.00-19.8)

    I'm definitely not hyper again but I don't feel as good as I did before. I wonder if once you have been hyper your body just doesn't feel 'normal' again.

    Let me know if you find the answer.

  • Hi, like you I stopped carb (not on block and replace but reduced drug as blood tests became normal) was on for 18months eventually down to 5mg every other day. I felt very anxious coming off, like losing a low-dose crutch but I am sure I've been over-sensitive looking for signs of anxiety as return of hyper. I am taking herbal medication and do have acupuncture. My only real symptom is a return of allergy to the cat, very annoying, but was told it was immune system kicking in and should calme down, so all fingers crossed. The consultant told me to have bloods done again in December and that if any changes just go back on minimum 5mg dose so feel positive - and a bit anxious but I am sure that is normal given the potential trouble hyper can cause.... all the best T

  • Thanks Tilly. Can I ask what herbal meds you take and would you recommend? I do see an osteopath for a neck problem and his practice specialises in acupuncture also. Maybe I will discuss this with him.

  • Hi William, I know the following are helpful, Bugleweed, gypsywort, lemon balm, motherwort, I go to see Max Drake at Urban Fringe in Bristol, you could always call him and get supply over the phone, he was very good and more importantly I felt in safe hands. I got for acupuncture somewhere else, a woman, brilliant, feel completely relaxed when it's over and after a few weeks feel the need again plus she's only £30 which is affordable and Max also didn't charge for consultation and his monthly supply is £30 too, for me worth every penny. Touching wood!

  • That's great. I will definately look him up.

  • Hi. This is really helpful. I knew from the bloods that the results were normal. I was on B & R for 2 years and felt great albeit for an odd episode here and there. I'm actually with a private consultant for consultations only, I still get bloodwork from the NHS. Honestly, got mucked around so bad by my GP and NHS Endo in the early days I had no choice. I pay £90 every 3 months to see him. I know its a lot if cash but makes me feel better knowing that he's on the end of the phone for a quick appointment if needs be. I also wonder whether some of what I'm feeling maybe hormonal. I'm fairly certain after coming off the meds that your hormones will be trying to get in a normal routine. Let's hope things improve over the next few weeks. Not even sure I know what normal feels like anymore lol.

  • Hi William

    I got off meds (carbimazole) in March 2013 and I have been in remission (you don't get cured if it's autoimmune) ever since.

    After stopping the carbimazole I was very anxious, I was so scared I would get hyper again (I was VERY hyper when I was diagnosed in March 2012). My experience is that the first couple of months my immune system went a bit crazy. Several times I was convinced I was hyper again, and then the blood showed I was fine. I got allergic skin reactions, low grade fever, palpitations… but in the end it all passed. I now know I sometimes get these "hyper weeks" where I feel tired and anxious, but it always passes. So now I'm much calmer :-)

    Try to relax and not think about your illness. Focus on work, hobbies, friends, etc. Try to avoid stress and you'll be fine. I am still in remission, I've taken up running and I run 2-3 times a week. I feel great. I know there's a 50-50% chance I can get ill again, but I try not to dwell on it and I focus on being healthy and trying to stay healthy. I used to worry a lot, but I've learnt it leads you nowhere. Enjoy your health for as long as it lasts. It may last the rest of your life! :-)

    All the best!

  • Really positive words. Thankyou. I know I should follow this mantra lol. I've recently started running and I agree that helps clear the mind. Good luck with your own recovery. I do appreciate the kind words.

  • Just another thing. My Endo has never spoken to me about auto immune. I had the thyroid antibodies checked about 18 months ago and he did say they were high but not overly. Does that have something to do with auto immune. Is it the case that if my bloods show no longer hyper I should ask to get my anti bodies checked again? Or is that me just getting confused? Could that be contributing to the low level anxiety I'm feeling perhaps?

  • Hi William

    You should really ask your endo if you have Graves' disease (autoimmune). He should have explained everything to you.

    I once saw a different endo from my usual endo and he told me I could have hyper symptoms even though my TSH and FT4 were in range (I was complaining at the time of feeling hyper), due to the autoimmune nature of the disease. He said the symptoms could be caused by the antibodies.

  • At the first appointment my Endo confirmed suspected Graves so that's all I know. I've not had anti bodies checked since that time 18 months ago so do you think I should be asking him to check those again? Would it in fact make any difference if they were high but TSH T3/T4 normal? In other words would it warrant him placing me back on meds? Not that I want to go down that route with meds again. As I said in my first post it really is mild symptoms as opposed to what I had prior to diagnosis. This thyroid malarkey really is a minefield! Lol.

  • I know that some endo's prefer to measure the antibodies before stopping medication, but mine didn't. We just took the plunge.

    I think you should wait and see, and try to focus on other things. Thinking about your symptoms makes it worse (is my experience). Another doctor also told me my body had to recalibrate and that totally made sense to me. Give it some time and try to relax.

    Good luck!!

  • Hi Misky. Thanks for your response. I've just rung my GP who is sorting out getting the antibody bloods done in time for seeing my Endo on Monday afternoon. I'm a fairly positive person and the only time I've suffered with anxiety and negativity is when I was un diagnosed. I know my own body better than my Endo and there's nothing more frustrating than being told that what I'm feeling is not as a result of the thyroid. Whilst I don't want to say I hope the antibodies are not as they should be, at least if they are it will help the Endo understand that I'm not going crazy. We will see - watch this space!

  • Hi William,

    I know what you mean and it's really good you know your own body - not everyone can say that. I still don't know how I kept denying I was ill (my partner had to drag me to the GP) while I was on the verge of a thyroid storm. Since I've been ill I listen to my body and try to "please" it by resting when needed, eating well, exercising, sleeping well, etc.

    Good to hear your GP listens to you!

    What I forgot to say is that it took me a looooong time to feel "normal" again, first after being diagnosed and starting medication, and then later after stopping the medication. Don't underestimate the time your body needs to find its balance again. So even if there are no measurable indications, it could very well be that your body is still readjusting.

    Let us know how you're doing!

  • A lot of people have said the same to me about when I should start feeling normal again. Perhaps once I've seen the Endo on Monday he can assure me that's the case also. Will post results from that app Monday night. Fingers crossed it's all good. The main thing is I certainly don't feel as bad as I did before being diagnosed and treated. It's only mild symptoms.

  • I can understand your anxiety but sorry can not explain it. I was diagnosed Overactive Thyroid 3 months ago now. put on Carbimazole my Gp halved the dose after only 3 weeks, in 4 days I felt really ill as bad as before I was diagnosed. I saw an emergency GP who put me straight back on the original dose, in 3 days I felt much better. I had seen a respiratory consultant who had said she was not an expert in the thyroid but she did know enough to know that if you were on the wrong dosage you would know very soon, and recommended that if that happened I should go to A&E and I should tell them the situation, they would do a blood test and I would get the results in 20 minutes! I am very surprised that I felt the ill affects of a reduced dose so quickly. But I did, and the benefits of the increase so quickly, it had taken 3 weeks before I felt the initial benefit, maybe we get used to having the pure form of the required elements and it takes a while for our bodies to adjust to the form our bodies produce it in

  • how long do you think you should be on the block and replace regime.... i have been on it for 2 months now and it's working well. after about 5 weeks on the carbimazole only, i feel wonderful. now i'm also taking levothyroxine i don't feel so great, but okay.... would like to come off the pills as soon as possible. what do you recommend? thanks

  • For me block and replace worked well from day one but my consultant did tell me at the time that they should both be started at the same time. Therefore if you started the thyroxine later, your system may just take a while to catch up. In terms of wanting to come off the meds ASAP that was my feeling at the beginning but I kind of took my endo's advice. He said its a marathon not a sprint. I stayed on them for 2 years and they worked grt. Hopefully I'm now in remission so I would say just listen to your Endo and report to them if you still don't feel right. As with all block and replace meds they may just need altering slightly. Good luck.

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