Any thyroid experts? Was hyper/ graves. T3&4 now normal but TSH still 0.04 and feel not right!

[landamum]

I wonder if anyone can help. Was diagnosed as hyperthyroid a couple of months ago. My T3&4 were only slightly out of normal range but I felt awful. Anxiety, panic attacks, diarrhoea and episodes of feeling faint were my main symptoms. Since being on carbimazole (nealy 6weeks) the panic attacks and high anxiety have stopped. my T3&4 have come down into normal range but my TSH is still extremely low at 0.04. My endocrinologist seems to think TSH is insignificant. Anyway, I am still feeling well under par particularly in the mornings - diarrhoea (but less often than when hyper), irritable and much more nervous than the usual me. Oh and a numbness in my left hand which is horrible but am trying to ignore it and tell myself it's fine (with some improvement).

What is up with me? Is it the carbimazole? Is the very low TSH significant after all? I can function fairly normally but do avoid some things as I'm now scared of having a funny turn :(.

Was the same for me with my Graves - T3&4 went down, but THS stayed under 0,01 and only got up to 0,2 when I was already hypo, T3&4 way too low (that was about 4 months after starting treatment).

What I have understood about the TSH level - as TSH receptor antibodies are present in Graves, the pituitary gland that produces TSH thinks those antibodies are actually TSH. So the gland believes that THS levels are adequate and does not produce any more, even though the level is really too low.

Thanks for your reply:). Are you still trying to sort things out or did this happen a while ago? Id be interested to see how things ended up for you :)

No still quite fresh. I got the symptoms last September (no panic attacks, but shaking hands, very hot all the time, heart rate 120 instead of my normal 60), started treatment in October and ended up having surgery a month ago. No thyroid - no problem :)

Am not an expert but am feeling the same. I was diagnosed in August 2009, pregnant in September 2009 and monitored by endo team at the hospital. DD2 was born and I was seen once by them and discharged, symptoms came back with a vengence when she was 10 weeks and was put on PTU things calmed down and were okay. I had bloods done 8 weeks ago because I was feeling crap - apparently they are normal and I need to stay on my dose. I feel exhausted, anxious, some tremors and that weird I need to eat before I fall over feeling. I am about to book a review with the GP and see i I can get a endo check as something is not right despite bloods being okay.

I just wrote a long reply and list it! Basically I had exactly the same, levels ok but feeling angry, stressed, impatient and tired all the time. I ended up stopping the carbimazole and instantly felt better, I believe it was that causing me to feel that way. I am currently under control and not taking any pills, I would be reluctant to take carbimazole again it I get hyper again. Obviously it might not be possible for you to just stop medication I'm sure it's not recommended but it worked for me.

Hazlenutt were your levels quite high hence having your thyroid removed? My thyroid levels were never terribly high so I doubt they'd operate although I was very symptomatic for only slightly raised levels.

blueberry I'm sorry you're feeling similarly crap. Please let me know how you get on with the GP. The weird I need to eat or I'll fall over thing is horrible. I suspect I've got hypoglycaemia (the low blood sugar thing) and this feels very different to an episode of that.

social butterfly that's very interesting about the carbimazole. I felt good for the first two weeks on it then started feeling weird. Some of the symptoms are similar to how I felt when hyper but the irritability and a sometimes weak/ numb left arm are new. I should probably see the GP but I'm not convinced they'll be very helpful.

as far as I understand, the numbers are not even that significant when deciding what the best course of treatment is. I started out with T4 at 42,3 and T3 23,3, so yes quite high, but they went down to normal and then hypo in the matter of months. Were within the normal range by the time of my surgery.

However, my GP and two different endos agreed that surgery was the appropriate option in my case. First when I researched the success rates of the long treatment (18 months was recommended) and relapse rates, I was not really happy with my chances.
But mostly as I'm not that terribly young and we are TTC - first, it's difficult if your thyroid levels are not normal. Second, it's not recommended with Graves either, as hyperthyroidism can cause several issues. My endo also told me that during the carbimazole treatment I definitely should not get pregnant (although the research if there are actually any risks is conflicting. Still, i didn't want to take the chance.)

So taking into account all this, I got it out and have no regrets. Not saying you should do it as well of course, but would not hurt to discuss all the options with your doctor.

HAzle - my levels were nuts 74.9 for T$ and 32 for T3 with no measurable TSH for 11 months on PTU. PTU is the pregnancy friendly version of Carbimazole. I have been back on treatment for just on 2 years and need a review in the next month so will book it. Removal was last on my consultant's list of options after radioacttive iodine

sure, Blueberry, radioactive iodine is an option too, and surgery is never pleasant. just was not the best option in my case, as you should not get pregnant at least 6 months after that, some say a year, and I didn't want to wait.

I also was diagnosed with graves back in 2009, was on carbimazole for 18 months. I was told to come of carbimazole last year july, i still have regular blood tests and so far so good they have come back normal, but i do always get very anxious before my results. When i was on carbimazole, i was always very angry, short tempered and always feeling shaky and jittery if that makes sense, my periods were also irregular, sometimes i would miss a month or even miss two months.Since coming of carbimazole my periods are regular and i feel a lot better, i still get very anxious and jittery, but the dr said it is anxiety and i need to calm down.

If I could just see a consultant it would be a bonus! I last saw one the day my DD2 was born, I saw one muppet at 6 weeks who did nothing. No meds review, no dosage change nothing. I would love a permanent solution but they are reluctant to do more than meds at all ever unless I have a crisis.

Hazlenutt I think you definitely did the right thing and I would have done the same! I'm in a different position though, not very high levels and have completed my family.

I am very up and down. Very confused as to why I feel rubbish much of the time. It must either be the carbimazole side effects or just 'stress' which manifests itself in similar symptoms to when I was hyper. I truly don't think it's stress though, I don't feel stressed! Just fed up and a bit worried about feeling 'not right'. Really not sure what to do!

I agree with miniweetabix I felt so angry on carbimazole, really short tempered and anxious all the time. I believe it's the carbimazole side effects personally however nothing like that is listed on the packet. I felt good when I first started on it but as the months went past I was more aware of the symptoms, I guess your first port of call is the GP, if he doesn't do anything you can decide if you want to try coming off it or not.

I have just been diagnosed with a hyperactive thyroid. Does anyone know if it is possible that the condition can disappear on its own? I'm on beta blockers and waiting to get an appointment with an endo.

Yes, if your hyperthyroidism is caused by thyroiditis it often requires no treatment and will return to normal in matter of weeks or months. More here:
www.endocrineweb.com/conditions/thyroid/thyroiditis

Thanks HazleNutt!

Not saying you should just wait and do nothing, of course. In most cases hyperactivity is caused by Graves and needs treatment.