Fitness with thyroid malfunction

[hebe]

Thank you, NY biker. That was very helpful. It's a very modest little gym, my initial plan was to use it mainly for upper body and torso as the running should help with lower body.

Indysteel, thank you so much for such a full answer, I appreciate it and will respond to individual parts below.

I, too, have an oversactive thyroid due to Graves' Disease--an autoimmune cause of hyperthyroidism. First off, I would encourage you to do as much reading as you can about hyperthyroidism. Have either of your doctors done an antibodies test to see if you test positive for the antibodies usually present for Graves' Disease? There are various causes of hyperthyroidism and not all of them are as permanent or as worrisome as GD?

I'm sorry to hear that you have Grave's disease, but encouraging that you can still lead an active life. My GP did do a test for "thyroid autoimmune antibodies" which was negative. I believe the endo was going to do another test but I don't yet have the results. I will ask for them when I'm back in the hospital this week.

Second, some of what your endo has suggested/ordered is bothersome to me. For one thing, I'm not sure why he ordered a scan while you were--at the time of your visit with him--on an antithyroid drug. You have to be free of any meds for such a scan to be helpful diagnostically.

I'm afraid I missed a bit from my original post. He told me that for the radioiodide scan I will need to be drug-free, and will have to stop taking the carbimazole 7 days before the scan. The paperwork says 4 days but he prefers 7 to be on the sure that he's seeing the thyroid as it works without medication. It's not apparently an issue for the ultrasound scan. In effect, he's stopped the medication 4 days before I would have had to stop it anyway. I think the system may be a bit different on this side of the pond - there is frequently a delay of a few weeks between referral by family doctor and appointment with the endo, and people seem to be prescribed meds initially by the family doctor until the endo can look into things more thoroughly. I will follow up after the scan however to see if I need to restart, or if I can wait until the next appointment.

I'm also not sure why he took you off the carbimazole entirely instead of simply reducing your dose. The protocol in the states is to start of at a high enough dose to control the thyroid and then to gradually reduce the dose for a period of 12-28 months. Both of those things give me pause. I'm be honest that at least in the States, a lot of endos aren't particularly good at treating hyperthyroidism; it can take some trial and error to find a good one. Sorry to sound alarmist.....

I'm not sure either, other than the fact that I've gone from over to under in quite a short time-frame. I think there is meant to be a letter or phone call coming with more details. I was quite happy with him on the first appointment, he spent a lot of time explaining things and answering my questions so I will stay for the moment and see how things go. He was quite disappointed that the doctor had not included T4 tests in the initial set and was clear that those needed doing. I do have the opportunity of going private if I want to, assuming that our cover includes thyroid, and will certainly be doing so if further down the line I need surgery. I understand that the treatment timeframe for this hospital trust at least is 12-18months, after which meds are stopped to see if the thyroid can continue to balance itself. If not, other options are available if continuing medication is not a choice.

As for your fitness: I think you need to be careful about elevating your heart rate until you're sure your condition is under control. Has your heart rate been running higher than normal? Any feeling of heart palpitations? Shortness of breath? Do you wear a HR monitor? If I were you, I'd avoid running until your thyroid function is under control. Stick to short, easy rides and walking in the meantime. If you do end up getting diagnosed with GD, be mindful that it can cause muscle loss. I do A LOT more weight and resistance work than I did pre GD. Just be careful as you sort out the diagnosis. As soon as I got my thyroid under control, I was back to my normal routine, but I was pretty careful in the interim. It's just not worth taxing an already taxed heart.

Thank you. My heart rate is fine for my age at the moment, it's a fraction higher than I'm used to but ok (less than when I was stressed at work). I've not been getting palpitations or shortness of breath, even when it was at its worst. I did think carefully about the running, it's a programme on our nhs website designed for anyone coming new to running regardless of their fitness levels. I will definitely stop if it's causing me any problems. At the moment it's going fine and I really value the de-stressing. During school terms I walk 4 miles a day on the school run but that will stop in a few days when term finishes. I had no idea about muscle wastage, thank you for telling me that. It looks like I should be thinking about more weight and resistance work once I have a diagnosis.

Thank you too, Bike Writer. I hope your test results are helpful and that you feel better soon. It is encouraging to read and hear of quite so many people who have normal lives with thyroid meds.

[indysteel]

You answered some of my concerns about your endo, hebe. I'm so glad that you tested negative for antibodies. It's possible that you 're experiencing a temporary form of hyperactivity. I hope that's the case and that you won't need any longterm intervention. Hopefully, the scan and ultrasound will be revealing. Sorry to sound so alarmist in my first response. I've had three emboss myself and have read WAY too many stories about bad ones. I like my current doc, but as I continue to have trouble regulating my levels, I still have reservations. I'd add that I went from hyper to hypo really quickly when I first started drug therapy. It never made much sense to me. I repeatedly had to reduce my dose until I finally came off of it entirely. Then I went hyper again within about six months. I went back on the drug again and my levels were good until about the seventh month. I started to go hypo again and am now off the drug. It's a roller coaster.

As for activity, just be really mindful. I never stopped exercising myself, but I can handle a lot more when my levels are normal.

[hebe]

Indy, thank you. Please don't apologise for thinking that your posts sound "alarmist", they're not, and I appreciate your taking the time to tell me of your experience and I wish you could have had a better time of it. I have no illusions about a tidy "cure" to this in 18months time, the endo has been nothing if not realistic. Whatever this turns out to be, I lost my entire May to it, functioning barely enough to do the school run and falling asleep at 6 on many days, anything else just didn't happen.

I have been so grateful not to be back there, and intend to make the most of the time when I do feel well. When I saw the family doctor after my results came back I begged for a low dose as I knew I was already starting to feel better and I didn't really want any massive step changes in my health, in either direction. He did put me on 15mg, rather than 20mg which is the normal lowest dose (outside of maintenance) for an adult. I was grateful he listened as even that dose has turned out to be too high.

I meant to say, your suggestion of a heart rate monitor is a brilliant one that I will take up. I'm not entirely new to running - I did do fell running (trail running?) and some road running quite a few years back, but restarting has not been difficult due to the gentle pace of c25k. A HRM would provide an extra layer of reassurance however and a clear signal of when to stop. Thank you.

[indysteel]

I'm going to read up on carbimazole. If I understand, it's a slightly different form of what I've taken, Methimazole, and has different dosages. I started off each time on 5 mg of Methimazole daily. I've taken as little as 5 mg a week to control the hyperactivity, without going hypo. I do know that European docs are more comfortable using antithyroid drugs longterm than American docs are. They tend to prefer radioactive ablation, which I'm opposed to at the moment.


But I digress. Please keep us posted as to your results and progress.

[hebe]

A quick update. Indy, your heart rate monitor tip was invaluable. I'm doing fine with the c25k but may need to drop my pace a bit as my heart rate is getting quite high. Although I am running in Cornwall this week which is far hillier than Wiltshire.

I'm doing fine off the meds but have the general feeling that I'm now closer to over than under. My 14/8 appointment was cancelled by the hospital and rescheduled to next week, so I should get feedback on the two scans and my July bloods. I'm booked in for bloods next week too so am psyching myself up to start the meds again once the results come in.

Indy, I would not want to have the radioactive ablation either. I'm hoping that if/when the time comes to choose, I can continue on carbimazole.

[indysteel]

A quick update. Indy, your heart rate monitor tip was invaluable. I'm doing fine with the c25k but may need to drop my pace a bit as my heart rate is getting quite high. Although I am running in Cornwall this week which is far hillier than Wiltshire.

I'm doing fine off the meds but have the general feeling that I'm now closer to over than under. My 14/8 appointment was cancelled by the hospital and rescheduled to next week, so I should get feedback on the two scans and my July bloods. I'm booked in for bloods next week too so am psyching myself up to start the meds again once the results come in.

Indy, I would not want to have the radioactive ablation either. I'm hoping that if/when the time comes to choose, I can continue on carbimazole.

Glad you're making good use of the HRM. Let us know what the bloodwork reveals. I'm sort of in the same boat as you right now. I went off my meds because my TSH was starting to inch up. I think my next round of bloodwork is next week. I'm curious to see what it reveals. I feel pretty good from an energy, exercise, sleep standpoint. My resting HR has been as low as 49 and as high as 55--which is great. So, I don't think I'm hyper. The only symptom that troubles me is that I sometimes feel really irritable, and sometimes irrationally so, and that's how I felt when I was first diagnosed. It's hard to know whether that irritability is from life stressors--which I have a few of--or the thyroid. I hate having to guess. I've long been very proactive at dealing with my emotional issues, but when I don't know whether they're true emotional issues or the byproduct of a thyroid disorder, it drives me crazy.

Keep us posted!!!

[hebe]

It's difficult, isn't it? It's not as if we have a constantly stable hormonal landscape anyway.

I saw a different endo this week and had more bloods done. I'm now very slightly underactive by TSH, and my FT3 and FT4 just squeeze into normal ranges. He thinks that I had thyroiditis in May which was on the way to righting itself when the carbimazole sent me underactive. So I'm still off the meds with more bloods and another endo appointment in 3 months. Apparently my levels came down too fast for it to be Graves, although there is a chance that it was Graves and I'm just very sensitive to carbimazole. The next bloods should help decide. I feel really tired though, I always used to be a morning person and now I find getting up and going hard work.