I haven't posted for a while since my husband ended up in hospital.The update is he was taken off carbimazole as he could not tolerate it. Saw Endocrinologist last Friday and he will be having Radioactive Iodine treatment to deal with his remaining half of the gland. Surgery isn't an option nor is alternative medication.
I am so relieved that we have been heard and a plan is in place.
If anyone has gone through Radioactive Iodine therapy i would be very grateful of your experience.
Thank you!
Hello again :
How is your husband and will he able to recover from the stroke - and how are you doing coping and making decisions for the two of you ?
I'm afraid it seems your husband has no option but to have RAI thyroid ablation.
I can only repeat the link I offered you some months ago :-
ncbi.nlm.nih.gov/pubmed/306...
The procedure is very simple - he will either take a tablet or drink a liquid and that's that:
Slowly the RAI burns out the rest of his thyroid and he will likely be prescribed T4 - Levothyroxine - thyroid hormone replacement which will be increased as dictated to by blood test results and reading for FreeT3 and Free T4 and hopefully his symptoms will be much reduced.
Hello pennyannie.
After having 4 MRI's they have ruled out a stroke and the diagnosis was bells palsy, which thankfully he has recovered from with steroids.
Unfortunately what they did find on the scans was a benign brain. Treatment plan no known as yet until Ent appointment in june.
In the meantime hoping the wait for radioactive iodine treatment won't be too long. The Endocrinoligist suggested it will be in capsule form but require an uptake scan.
Thank you very much for your information.
Vanessa
Okey doke :
Please try and take some time for yourself as you have been battling for his health for some time and must be exhausted yourself.
Take good care and keep us in the loop:
Thank you! It is very exhausting, but we will get there in the end. I will keep you updated.
Hi 1digits0,
Glad you have both been heard and a plan is in place. Although others will be able to comment on RAI as I have no experience of this. I had a partial thyroidectomy (hemithyroidectomy) last August 2022.
Were you ever able to obtain any of your husband's blood results?
I've been reading this forum for a few years now and the importance of having full thyroid blood tests is essential to help and guide your husband's treatment.
Did the endo request any blood tests for him?
If he doesn't have any current blood test results, he can get them done privately. One of the things I have learnt from this forum is how important it is to have blood tests done. I can't emphasize how essential this is.
Prior to my surgery I had full thyroid tests done. Often those done by the NHS don't include full thyroid testing just TSH which is completely inadequate.
Monitor My Health are one of the testing companies. They are an NHS lab and they send out fingerprick test to be done at home. Hopefully someone will post a link to further information and with a discount code.
Best wishes.
Hi.
Yes whilst in hospital they were taking bloods every day for a week. They were looking at T4 T3 andTSH.
T4 was anything between 15 and 27 and TSH i am not sure.
She has requested full bloods to be done in oreperation for the iodine scan to see how the gland responds to the iodine.
Hi 1digits0,
Make sure to get those results and their ranges. Your husband is legally entitled to have his results. The ranges are usually in brackets.
You can post them on the forum and others will comment on them.
Don't rely on the NHS to do full testing. I did and they didn't test FT3 which is essential to know.
Did your husband ever have antibody testing done?
Other more experienced forum members will hopefully be around to comment.
The reason it’s important to check the FT4 & FT3 results is because doctors tend to look as TSH and this is not a thyroid hormone.
The TSH a pituitary hormone which signals the thyroid to reduce or increase production of new thyroid hormone.
Once the thyroid had been dysfunctional the TSH can be very unreliable, my TSH had been suppressed for a decade, my levels were elevated from a nodule, but despite taking carbimazole for over 4 years and thyroid levels being in range the TSH has not responded.
It’s possible your husbands thyroid levels have not been high, but that the TSH is low & this it what doctors are looking at. Assuming thyroid levels are high and need lowering.
From the sound out it your husband felt very unwell & with hypothyroid symptoms on a very low dose of carbimazole. Seeing as he previously had a partial thyroidectomy this would make sense. I suspect the thyroid levels are not highly over range, the TSH is low and not reflecting it.
Is he having an uptake scan of the thyroid prior to treatment?
I’ve have an “thyroid uptake scan” or “nuclear scan” to confirm strong suspicion of hyper functioning nodule.
Hospitals can complete the scan differently - either a small injection into vein, or some hospitals give a drink. The substance is low level of radioactive iodine so is taken up by thyroid.
An injection is quicker and scan 30 mins later, if a drink the wait might be 3 hours, or return the subsequent day.
The radiation level is very low but you usually have to minimise close contact for 24 hours afterwards.
A letter should inform you prior to undergoing it.
The scan I had was open but the overhead screen (CT scan) bit was pulled very close to my face.I had stickers placed near my collar bone, this helps mark the area they are scanning.
I took a big bottle of water with me they advise you to drink plenty after the scan.
Scan was all straightforward with no issues.
The treatment itself is very easily administered as given as a drink or in a capsule. I’ve not had treatment but most report they arrive, sign a consent form, swallow medicine - which is usually in lead lined container then shown out a side door to go home, you must have your own transport.
Usually your husband will need to be in isolation of 2 weeks after the treatment.
The dose is usually fixed in uk, - ie everyone get the same set dose, whereas in some countries the pre scan is used to calculate a more accurate dose. Doctors prefer to give a higher approximate dose to prevent the need for repeat treatment.
10% do go on to need further treatment.
The hospital tends to give a leaflet explaining about the treatment, have you been given any information?
Most become hypothyroid within 6 weeks, so ensure a repeat blood test is scheduled & in place prior to treatment.
Make sure the testing is complete prior to treatment as you will need a full benchmark for post treatment levels. Nutrients are often become very low after treatment.
Thank you so much for the information, that is very helpful.My husband was given blood test form to have done asap. Awaiting date for uptake scan. The Endocrinoligist is sending blood forms for 6 and 12 week post capsule treatment.
Hopefully he won't have to wait too long.
Thank you very much
Essential to test vitamin D, folate, ferritin and B12 too
Request these are tested if not been done yet
Or test privately
On levothyroxine vitamin levels need to be optimal
Test at least once year
Recommended that all thyroid blood tests early morning, ideally just before 9am (and last dose levothyroxine 24 hours before test )
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
My husband is on vit d already, not entirely sure if others have been checked.Thank you very much for the links.
how much vitamin D and when was level last tested
NHS only tests and treats vitamin deficiencies
We need OPTIMAL vitamin levels
Vitamin D at least over 80nmol and around 100nmol-125nmol maybe better
Serum B12 at least over 500
Active B12 at least over 70
Folate and ferritin at least half way through range
Carbimazole and weight!
Can a private endo refer me for NHS treatment?
Carbimazole didn't work!
Any Update on Consultations re proposed removal of T3?
carbimazole 
