The last time I posted was sometime last year, when I had been taken off 5mg carbimazole and had been discharged from the hospital back to my GP.
Fast forward a year. I had blood tests last week (14.11.23) only to discover that my T3 is 20.1 pmol/L, previously 4.6 pmol/L (Sept) and TSH is 0.01 mlU/L, previously 0.94mlU/L (Sept), my heart rate is also higher than normal at rest, so my surgery is referring me back to the hospital.
I told the pharmacist who gave me my results that I am reluctant to be referred back to the hospital because in their discharge letter last year, the consultant stated that if I were to come back, then their option would be either removal of my thyroid or radioiodine. Two options I have already rejected due to the fact that I am my 80 year old disabled mother's main carer.
My question to you out there is: What other options do I have? Can I be made to have either of these terrifying options?
I would rather just stay on carbimazole for another 18 months or less. Is there anything I can do to help myself? I know that the thyroid often gets a raw deal😒 I really don't want to 'kill it'!
Thank you in advance!
LadyA
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Doctors often imply definitive treatment is only option once you have relapsed but you don’t be pushed into an irreversible decision until it’s on your terms.
Many stay on carbimazole long term. Doctors say it’s more straightforward to be treated as hypothyroidism is more easily treated, however this is based on the most cost effective treatment for most people.
Push for careful monitoring of thyroid function & carbimazole adjustment - at least 6 weekly at first. The aim is to get FT4 & FT3 into range, the TSH can linger behind & can be unreliable. Sometimes doctors just look at TSH doing this can allow the FT4 & FT3 to drop too low.
Testing folate ferritin B12 & vitamin D important as can be affected when thyroid abnormal.
If Doctor can’t / won’t test everything there are private options.
Gluten can also be an issue with thyroid autoimmune. Worth testing for coeliac then even if negative trailing strictly gluten free diet.
Thank you, PurpleNails, for your speedy response to my post.
Since joining this forum, I have learned that doctors and consultants choose the easiest options for them. Had I not posted last year, I probably would have had my thyroid ablated with radioiodine. I am just glad to post and to receive positive responses such as yours to help me choose my own treatments for this issue.
I did have my ferritin checked, and this was out of range, 203 ng/ml or ug/l.
It doesn't look like B12 & vit D were tested. I will contact my GP again on this matter. I will also go private if I can't get the relevant tests.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Thank you for the info about ferritin levels,this is something the doctors don't tell you. Based on the research i did last year, I am going to stand my ground when my referral arrives.
I didn't know that menopause has such an effect. Something I'm going to look at more closely. Thank you again!
and suggest you take some copies of same to your next appointment :
You are under enough pressure, and this additional stress is not helping you -
As I understand things - you can't be forced into treatments you wish to decline and the AT drug is safe for long term use -
it just costs more to manage in a hospital setting where the pressure is to reduce O/P waiting times as quickly as possible and process ' the queue ' quickly - and to open up more appointment slot availability.
so your endo may well discharge you - with instructions that you will be monitored locally, by your primary care doctor.
Just last night I looked back at my original post and realised that all the original responses including yours are still very valid.
Thank you for the research links. I will read with interest.
I really have no intention of allowing consultants to force me down a particular treatment route. I am so grateful to this forum as I nearly opted for radioiodine last year because they made it sound as if that was the least intrusive option.
I am now looking at investigating the private option.
Just to say I have been on Carbimazole since 2019.Im now on a really low dose. I was discharged back to GP this year as Consultant said I had to have treatment or leave his list.
I am only given blood tests every 6 months now.
I do have thyroid induced sinus tachycardia now so I’m looking at that with a view to treatment in future. As I have nodules I’m hoping Ablation becomes a more accessible treatment.
Read your post with interest as currently in a similar position. Came off 5mg of Carbizimole last month and expect my next appointment with the endo to be discharged. This is despite me saying I don't feel brilliant.
I have pennyannies links ready to print and wave if necessary.
Thank you for replying to my post. I hope you have found some useful information here.
Luckily for me, I have had no real side effects to my current situation. It was only because I noted that my heart rate had started to increase whilst on the treadmill at the gym, that I requested a blood test from my surgery. My heart rate seems to be the tell tale sign that my thyroid is hyper again.
Do not be bullied into having RAI treatment. AT medication is safe long term whatever your Dr/Endo says, it’s just easier for THEM to get you off their list. Unfortunately, I fell foul to their bs and almost 6 years on am still suffering the consequences.
Thank you for your vote of confidence. I am glad you say I should not to be bullied! I am definitely going to dig my heals in and not accept any of the two option I have already been told they will likely offer me if I go back.
I have been suffering hyperthyroidism for under three years. I don't think that, that is long enough to opt to take the thyroid out etc.
To be honest, I don't mind being taken off their list as long as I keep my thyroid.
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