I am Hyperthyroid since January 2019 with 2 hot nodules. Been on Carbimazole since (2.5 mg 3 times a week at moment).
Also have possible thyroid sinus tachycardia. Heart rate elevates when walking . Had a heart monitor and this was what was deduced by Cardiologist.
Bloods taken 19th May 2023
TSH 3.00 0.35-5.00
T4 16.1 7- 22
T3. 4.1. 3.80-6.70
Last bloods taken January 2023.
Today I had phone consultation with Endocrinologist. I had already been informed I had to decide this time on RAI or surgery or be sent back to GP for monitoring.
I just couldn’t bring myself to agree to either so have come off of list and will have 6 monthly blood tests by GP.
If become symptomatic can be referred back for difinitive treatment.
I am hoping I have done right and would welcome any thoughts about blood results or this situation.
Many Thanks
Written by
Hugoo
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In basic terms, the specialist doesn’t want you on their book so sending to GP for monitoring,
Have your specialist specify how frequently you should have blood test.
My specialist specified TSH, FT4 & FT3 should be tested & also noted FT4 should be 15 - didn’t put range - but didn’t say how often - so I have to chase up.
Dr has always arranged so far, but I’m sure they want to test less frequently.
I also found the GP doesn’t like to adjust dose & will ignore rising / high levels (I’m sure they would ignore low too) & my TSH always low. I argued before for slight increase when levels are rising & they altered the wording - not the amount. So I’m low on medication… & waiting for telephone appoint to try & arrange an increase.
So the specialist would ideally say small increases if necessary.
I agreed as I hoped I wouldn’t have to have conversations about when I would have treatment & I knew I’d have access to GP record & results too which was better. But the GP does ask me the same. When am I having treatments? And why am I delaying?
The consultant has said 6 monthly blood tests. If the GP doesn’t do T4 and 3 there is no point having the test. I really hope I’m not going to have problems. I can see why it is tempting just to have the treatment and hope for the best.
I might do an E consult in a months time and ask how they are going to monitor me.
I have Graves, for more than 10 years: I left the NHS. I negotiated a price for phone consultations with a private endocrinologist who works for the NHS and I’m having the blood tests done privately but not through the links recommended below because a blood test needs to be done at the vein in a hospital. A test with drops of blood sent by post is extremely inaccurate.
As for your heart rate: I monitor it at home with my blood pressure because I know that every time I step foot in a hospital or at my surgery, my heart rate can climb to 120 heart beat per minute. At home, I monitor it with a heart rate/blood pressure monitor and at rest without any stress and I’m usually between 62 and 68 heart beat per minute. I even remember an NHS hospital in 2015 in which the heart/blood pressure monitor was so damaged that my heart rate was measured during 3 months at 150. I asked the nurse to take manually during 15 seconds and my heart rate was at 80 which was completely normal.
Your results are extremely confusing: it would be best for you to put the results and then the lab bracket. Moreover, it’s the FT4 and FT3 which were tested and not T4 and T3 if I understand your post properly.
I understand your results. I don’t see the point of doing RAI because you reacted extremely well to a very low dose of Carbimazole. Carbimazole can be stopped to see if the nodules restart. If they do and you get results last the ones you posted, you can stay on 2.5mg 3 times per week or twice a week for years. You have to keep in mind that for mild overactive thyroid like mine - I have a rather mild Graves - it’s easier to balance the thyroid with Carbimazole than to balance an underactive thyroid after RAI.
I know my Graves is extremely inactive because since I left the NHS, the TSH receptor antibodies were systematically tested privately and that’s how my endocrinologist discovered that when my TSH is suppressed and FT4 and FT3 are elevated, my antibodies are not elevate or only extremely mildly and it takes 2 weeks at 15 or 10mg of Carbimazole to have FT4 and FT3 in range and the TSH goes back to normal very fast too. If I had stayed with the NHS, they would have done RAI while I’m actually suffering now and from an inflammation of the thyroid with no Graves. Problem is: only TDL in London can check the level of antibodies properly. The NHS cannot and the private tests at home cannot either. It’s an expensive and rather complex blood test. It’s very poor from the NHS not to be able to make the difference between someone having Graves and someone having recurring thyroid inflammations.
antibodies indicate autoimmune but not the state of the thyroid condition or levels. It’s useful for diagnosis and there’s somethings be said for negative TRab being a good sign for Graves remission but if your thyroid levels are high - antibodies are negative, & thyroid inflamed what is testing antibodies telling you?
Those with autonomous nodules are hyper without autoimmune.
Once you’ve taken carbimazole to bring levels into range you need to find a dose to keep it even. I don’t recommend stopping & starting.
Which antibodies are you testing, Trab, TSI, TPO & or TG. & more importantly what is your FT4 & FT3 doing?
from my own personal perspective I would say that your TSH is currently too high and your T3 too low so I would not be continuing to take that dose of carbimazole myself. Personally those levels would give me tachycardia on exertion. My opinion for what it’s worth would be to see an endocrinologist privately who can write to your GP to tell them how to treat you and how often to test your bloods as once every 6 months is woefully inadequate in your situation. It seems to be the way now in the NHS to get patients ‘off the hospital books’ in order to reduce waiting lists. Please do not be fobbed off and do your own research before agreeing to so called definitive treatment.
you will need your GP to refer you to the endocrinologist of your choice at your local private hospital. If you continue to take that dose of carbimazole then I would expect it to send you further towards hypothyroidism so you could end up feeling worse than you do now. I would want blood tests every 3 months as a minimum. Good luck 😉 please do let us know how you get on
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