Currently hyper and want rai?

[Fluffypip]

I'm struggling with meds and am currently unmedicated and hyper. Can I gave RAI as I am or do thyroid levels need controlling first?? I don't know what to do...

[PurpleNails Administrator]

I believe the levels must be under control before undergoing RAI.

You would normally need to stop taking anti thyroid a week or two before the procedure as the thyroid has to be working to ensure uptake of the radioactive iodine.

If levels are already too high when the procedure is done there is the levels increase dangerously.

Has you doctor recommended RAI? Are you consulting privately or through NHS?

Has cause of hyper been determined? and do you have any results to share.

Do you have an issue with carbimazole? You not taken it very long, having RAI early on is not right for everyone.

Can you add summary of history to profile, you have other health issues?

[Fluffypip in reply to PurpleNails]

Yes sure.I found out 3 weeks ago I was hyperthyroid tsh 0.005 t3 8.6 t4 44. I have a few very small nodules but no idea yet if thats whats caused my level to go hyper so quickly from normal 3 weeks before.

Endo started me on 10mg carbimazole (seeing him privately) after 5 days I developed a sore throat. Had 3 blood tests and compared with ones done before meds. My neutrophils are a bit low but the same as they always have been. My endo stopped meds last Thursday and asked me to see a rheumatologist to a check why my neutrophils are generally low. Daw rheumatologist who feels its just normal for me and not a worry. He suggested to go back and see endo and start on ptu.

Endo said my options were ptu or surgery. My liver enzymes have been raised in the past and I have fatty liver...I'm desperate to avoid ptu as it sounds so toxic. I'm seeing endo this week to decide what to do. My sore throat had got worse today (6 days after stopping carbimazole) and I've started on antibiotics.

[PurpleNails Administrator in reply to Fluffypip]

If your neutrophils are low for you can carbimazole be used or is it not to be restarted?

PTU is chemically very different too but can cause same issue and is also considered harsher on liver so I can understand why you want to avoid it.

Has your GP referred you to endocrinology? They may have strong ideas how best to proceed.

RAI results in hypothyroidism in most cases, it can take a long time (months / years) for full affect to complete.

I’ll attach some links to information leaflets which doctors tend to hand out

You should research & consider option of surgery too as this might be suggested.

btf-thyroid.org/treatment-o...

btf-thyroid.org/thyroid-sur...

You could also ask about other potential options / eg a referral to Hospital that can perform Radiofrequency ablation.

btf-thyroid.org/less-invasi...

They may be unfamiliar with this type option so having the facts will help your case.

[pennyannie]

Hello Fluffypip :

We are looking at an auto immune disease that is not resolved by burning out the thyroid in situ rendering the gland non function and you then primary hypothyroid and reliant on daily medication for the rest of your life, that may or may not work well for you.

The most recent research papers we have are suggesting the longer the patients stays on the AT medication the better the long term outcome is for the patient ;

pubmed.ncbi.nlm.nih.gov/338...

We also have a research paper detailing RAI offers the worst QOL 8-10 years on - and I can vouch for that as I drank this toxic substance back in 2005 and told I would be better as the AT drug - which I was well on - was too dangerous to stay on long term.

ncbi.nlm.nih.gov/pubmed/306...

Though the NHS denied any of my symptoms some 10/11 years post RAI were anything to do with my continued ill health and i was also refused any treatment options and stuck on T4 monotherapy which was compounding my health issues.

I now self medicated with NDT and stay away and am much improved.

There are 2 AT drugs - Carbimazole and Propylthiouracil - PTU for short :

How often are you being seen - maybe the AT drug needs adjusting ?

Do you have there your initial blood test reading showing a TSH, T3 and T4 reading and range - and do you have a positive antibody reading for Graves generally written as a TR ab or a TSI :

What are your most recent results ?

[Fluffypip in reply to pennyannie]

.I found out 3 weeks ago I was hyperthyroid tsh 0.005 t3 8.6 t4 44. I have a few very small nodulesI am keen to keep my thyroid! But as I explained above, carbimazole was stopped and as far as I can see, ptu is totally poisonous for my liver

I have been tested for all antibodies and negative for everything.

[birkie in reply to Fluffypip]

I was much the same as yourself on both anti thyroid drugs, my results were suppressed TSH and T3 24.2 no T4 was done🤦‍♀️ but those results were hyperthyroid.I to were put on the carbimazol first, after a week I had stomach /bowle problems and a sore throat, although at that time I didn't connect the sore throat to the drug, I thought that was my inflamed thyroid.

My body just wouldn't accept the drug and I went on to vomit every tablet back, my gp kept insisting I keep trying to take them as the side effects would go, they didn't so he tried PTU which was uttly worse, but he really couldn't care less about my health, even after I told him I was also vomiting these back to.

He let me go into thyroid storm as I wasn't controlling my thyroid levels 😠 lost my thyroid in 2019 😠

After thyroidectomy /recovery I looked up the ingredients of these drugs and found to my horror they contained LACTOSE amongst other stuff fillers ect.. I'm lactose intolerant and have colitis, I had an colonoscopy in hospital after being admitted in thyroid storm, it was found the drugs were damaging my bowles, I refused to take anymore I was vomiting them back anyway so they definitely weren't doing anything for my thyroid levels, my bowles returned to normal again, I wasn't given the option of RAI just full thyroidectomy as I was now thyrotoxicosis.

Unfortunately I'm having the same problems with the thyroid drugs in that they are giving me stomach and bowle problems 🤦‍♀️ I'm just so angry my care provider (gp) allowed me to become very ill hence the loss of my thyroid 😠

I wish you the very best in your journey, do heaps of research on your condition and the safest and best way to move forward 💓

[Fluffypip in reply to birkie]

Really sorry to hear that. My husband had ulcerative colitis and he reacts so badly to drugs too.

[pennyannie]

Ah, sorry, I saw you have Lupus and having had RAI thyroid ablation myself jumped to the conclusion that you too were with Graves.

It seems very soon in your treatment to be taking such definitive action.

[Fluffypip in reply to pennyannie]

No I definitely don't want to kill of my thyroid.! Ill just paste my reply to someone else explaining my situation

Yes sure.I found out 3 weeks ago I was hyperthyroid tsh 0.005 t3 8.6 t4 44. I have a few very small nodules but no idea yet if thats whats caused my level to go hyper so quickly from normal 3 weeks before.

Endo started me on 10mg carbimazole (seeing him privately) after 5 days I developed a sore throat. Had 3 blood tests and compared with ones done before meds. My neutrophils are a bit low but the same as they always have been. My endo stopped meds last Thursday and asked me to see a rheumatologist to a check why my neutrophils are generally low. Daw rheumatologist who feels its just normal for me and not a worry. He suggested to go back and see endo and start on ptu.

Endo said my options were ptu or surgery. My liver enzymes have been raised in the past and I have fatty liver...I'm desperate to avoid ptu as it sounds so toxic. I'm seeing endo this week to decide what to do. My sore throat had got worse today (6 days after stopping carbimazole) and I've started on antibiotics.

[pennyannie]

No worries - we can all read all your replies - so you don't need to retype information.

[Hookie01]

Hi, I wouldn't recommend RAI if I had the choice again, I would go for surgery. But before you do either, the only other option is looking at diet. Going completely plant based to reduce inflammation. So no gluten, lactose, sugar, processed food, eggs, meat etc. It works for some. Wish I had tried it before going for RAI. Sounds like you are having a hard time with the meds. They affected my liver too and RAI made it worse, I now have fatty liver which is inflamed and causes me pain and really noticable and uncomfortable bloating. Following plant based is helping with that. RAI depletes some vitamins and minetals also, its taken me 5 years so far to start feeling better. Good luck with whatever you choose.

[Fluffypip in reply to Hookie01]

Thanks . Yes I'd already made those diet changes a while back for fatty liver and ironically I became suddenly very hyper! What issues did you have with your liver before and after rai? What meds did you take? I know hypothyroidism is connected to fatty liver.

[Hookie01 in reply to Fluffypip]

Before getting ill I didn't have any issues with my liver that I knew of, but the liver flutters/cramps started when I was on carbimazole (didn't realise what it was at the time) I was on meds for about 3 years, after I had RAI I went on levo and I literally put on like 3 stone over night, the bloating on the right hand side started litterally overnight when i started levo. Worked out eventually that lactose free meds helped. Unfortunately fairly soon after having RAI I lost both of my parents, so really wasn't looking after myself. So eating wrong, drinking etc. So obviously made it worse. Was diagnosed beginning of this year with fatty liver, though my blood tests say my liver is fine.

[Kowbie in reply to Hookie01]

So sorry about your parents, I hope you can sort out what you want to do , good luck

[Hookie01 in reply to Kowbie]

Thank you

[Kowbie in reply to Hookie01]

Agree with you about not going for rai treatment,I wish I had known better but they told me it will bring it back to normal , that was over 30 years ago still ain’t there

[Hookie01 in reply to Kowbie]

Same, which I had done more research, but guess I was only looking for good. I'm alot better than I was, so I'm grateful for that.

[Kowbie in reply to Hookie01]

I’m glad you’re feeling better, i hope to be there one day , nice chatting

[Hookie01 in reply to Kowbie]

I hope you will be too. Nice chatting to you too. Take care.

[Kowbie in reply to Hookie01]

X.

[Fluffypip]

Sorry about your parents that must have been very hard. When you say flutters/ cramps..what do you mean?, did you go completely hypo after rai?

[Hookie01 in reply to Fluffypip]

Thank you, it was. If I bend or stretch in certain ways it cramps up. Started as flutters, but I'm guessing as it got bigger they turned more onto spasam type cramps. I can actually feel it like puff out if that makes sense? It spasams, I have to stretch to stop it then it goes back down. Its really weird.