Thank you for that, it is my son who has had Graves’ disease diagnosed in 2016.
He was taking Carbimozole right up until 6 weeks ago, but then whilst taking them, all his original symptoms returned, sudden weight loss, tremors in his hands, visibly agitated and irritable.
He was told to stop taking Carbimozole because his white blood cell count dropped so low, and for about 4 weeks was taking nothing and then for the past couple of weeks has been taking PTU 200mg daily and Propranolol 40 mg x 3 daily.
He is currently being monitored by weekly blood tests but the Endo Dr has said you have 8 weeks left of taking medication, but you must decide Iodine injections or surgery.
He has not even had a Thyroid ultrasound scan yet, that’s not booked in until 26th July, so not even sure what’s happening there.
These test results he received today and they do not all have ranges beside them, just how you see them there, other than b12, 294 (normal range 189 to 883) and folate 10.3 (normal range 4.8-19.0)
On the letter is does say relapsing hyperthyroidism secondary to Graves.
Sorry, my fault, I should have given you some background first!
So he had been stable on carbimazole since 2016 then his levels suddenly rose?
Did he definitely keep taking the medication? Or was it stopped before relapse due to the drop in white cells?
A Thyroid ultrasound scan often isn’t carried out unless the cause of the hyper is found NOT to be autoimmune and they need to look for hyper nodule. Or there are issues with swallowing, breathing or voice. Does he have any of these?
Radioactive iodine treatment is usually a drink or pill not injections. Sometimes it’s injected for thyroid uptake scans.
Medics usually suggest anti thyroid medication for around 18 months but sometimes this is too soon and patients can & do chose to remain on anti thyroid long term if they are stable and respond well to medication.
Obtaining test history to see how his thyroid levels have altered & which antibody testing has been done is also good idea.
Arranging online access is ideal if his practice offers it, as being able to view test results & referral letters without involving anyone very useful. Otherwise obtain results via reception (not doctor, they don’t like it!) & don’t accept verbal or hand scribbled notes he needs a printed copy with ranges (ranges vary between labs so essential). You don’t have to explain why you want them but if they ask just say for your records. You are legally entitled to your records.
Thank you for this information…. yes that is right, he was regularly taking Carbimozole from 2016 right up until 6 weeks ago.
He unfortunately was with an Endo Dr who in 2019 had a stroke and my sons appointments were cancelled and then Covid so for 2 years he was not really monitored, right up until 6 weeks ago and then he relapsed, all original symptoms of Graves whilst taking Carbimozole. That’s when he was told to stop medication as in was likely Carbimozole induced neutropenia.
I am not 100 percent sure if he has had any symptoms described, swallowing, breathing or voice. But as he has only been examined last week by an Endo Dr who said his Thyroid is swollen, and my son told him that it had been bigger, more swollen, and this was it reduced, I thought a scan was something they would routinely carry out….. otherwise how would they know it’s health?
Sorry, I am confusing how they administer Radio Active Iodine, but this is what they have said is one of his 2 choices, the other being full removal of the Thyroid. My son said that he did not want the Radioactive Iodine and would, out of the 2 prefer surgery.
I have had quite a struggle for a more in-depth blood test, other than a standard TSH and T4. The GP said that a more in depth is what the Endo Dr could request.
As mentioned, we finally saw the Endo Dr last week, I asked could we have a more in depth blood test and he asked why… then said ok he would request do a full blood test and this is what came back (in my first message).
I really don’t think my son thought there would ever be the next step and he would just continue with the medication indefinitely, or maybe that he would worry about the next step if and when it came.
I have been requesting from reception at his GP a print out of blood results as he has been having them weekly for the past 6 weeks (checking white blood cell count), and they usually are very good at providing this but that’s definitely a good idea to check previous online as his practice do offer that service.
Thank you for taking the time to write a response, it’s much appreciated.
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