Follow up call with Endocrinologist

[Sunbeamdapple]

This week I have a follow up call with my endocrinologist, I only see them when they want to see me so I'm very anxious to make sure I don't miss anything. Last time I saw them was the first time I saw them, they asked if I felt better from my symptoms of graves with the medication, I told them I did... (I was feeling all sorts of symptoms but the graves symptoms were better.) They were really pleased to hear this and sent me for a blood test to confirm the medication was working. The blood test results came back and showed that I had swung completely the other way in the 8 months I was on carbimazole and actually was now hypo- the automated system told me to half my medication and get blood tests every 8 weeks. I am now certain that I am back into hyper graves, I have all my symptoms back, blood test results showed falling towards this result but the last blood test was 5 weeks ago and I don't think it shows the extent. I'd much rather this phone call happened after a blood test so we were working with facts but I can't request for bloods the system is automated. My main point is : I feel absolutely awful, and very fuzzy and forgetful, I have an inherited fear that doctors won't take me seriously as my family have had a terrible time with it as they have EDS, and POts, and I feel I wasted my last appointment trying to mask all my other problems going on in order to act like a helpful patient and stay on topic with what was related to my graves. My current symptoms (which may not all be graves) are: Dizziness

Increased appetite

Still gaining weight as far as I can tell

Hair loss

Slight tremors

Fatigue

Palpations

Heart burn

Brain fog

Muscle pain and weakness

Sporadic sharp pains like a sting

Inflammation in my joints especially fingers and wrists

[Forestgarden]

Hi there, I'm hypo post RAI for Graves. All these symptoms are thyroid symptoms so be sure to mention them all. It sounds like the advice to cut your meds was too drastic. Can you post your results? There can be a lot of overlap with hypo and hyper symptoms. On levo, my ft4 was at top of range, and I had tremors, anxiety, mind racing, but my ft3 was bottom of range, so I basically slept all the time and was freezing cold! So, discuss all your concerns, and get full blood tests, and only agree to very gradual changes in your meds so that you don't overshoot your optimum dose.

[Sunbeamdapple in reply to Forestgarden]

Trying to add results here I'm not sure if it's going to make me do them one at a time. Very reassuring to know that these would all be thyroid related

Results

[Sunbeamdapple in reply to Sunbeamdapple]

Second set of results

Free T3 results

[Forestgarden in reply to Sunbeamdapple]

Got confused by your description of graph for a minute. These are tsh results, not ft3. So your tsh is high signalling your thyroid to make more t4 and t3, which is what we'd expect looking at your ft4 graph. The latest result might show tsh in 'normal range' but still not satisfactory when you're obviously getting symptoms. Good luck with your appointment. Don't miss anything out

[Sunbeamdapple in reply to Forestgarden]

Oh yes! I see I've mislabelled the results there 😅 thankyou for having a look, I'll be very interested to see where I'm at now...5 weeks after these results and definitely feeling the symptoms, my next blood test is in 3 weeks

[Forestgarden in reply to Sunbeamdapple]

Your ft4 is lamentably low. No wonder you have symptoms. You have been overmedicated on carbim. There's a great deal of lag when changing doses, so always do it gradually so you don't overshoot.

[1tuppence]

Hi. As you feel/know you are forgetful have you considered writing out a list of your symptoms to be able to read them out? I know it's stressful being on the phone, and easy to lose what we want/need to say. I had a call from my endo last week. I prepared by thinking of what in my case had improved, and what had room for further improvement. I then wrote these things down in a list, and found it helped me to cover all I needed to say.

[Sunbeamdapple in reply to 1tuppence]

Definitely writing these down to read out to the endo but I love your idea about how to structure it, thankyou!