Hi, so glad I found this site

[Sadsacks]

Hi everyone, I was diagnosed a week ago with under active thyroid after taking radiation iodine back in October for Graves’ disease, to say I’ve had a bad couple of months is an understatement but finding this forum is going to help me a lot I hope, I’ve been put on 75mg levothyroxine only 6 days in so still feeling very low and lethargic.

[PurpleNails Administrator]

Welcome to the forum.

How long did you try anti thyroid medication prior to RAI?

The majority of those undergoing RAI become hypothyroid (usually within a year) presumably you were monitored closely to prevent your levels dropping too low?

Did you start on 75mcg? Are you tolerating ok as standard starter dose is 50mcg. Do you have a further blood test scheduled in 6 weeks to recheck levels? Increases may be required. Which should be done it 25mcg steps.

Do you take same time every day? Away from other medication, supplements, food & drink (except water)?

What are you recent results? Testing early morning after fasting and delaying dose until after draw will give consistent results.

For full thyroid function you need

TSH

FT4

FT3

TSH is not a reliable measure, especially after being hyper and after treatment.

What thyroid antibodies have previously been tested?

Thyroid Peroxidase antibodies(TPOAb)

Thyroglobulin antibodies (TGAb)

If Graves suspected

Thyroid stimulating immunoglobulin (TSI) Or

TSH receptor antibodies (TRab) would have been required to confirm diagnosis.

Also important to test

folate,

ferritin,

B12

vitamin D.

Nutrients often affected if thyroid dysfunctional.

Many with Graves have gluten intolerance. Do you have stomach issues?

You can legally view all your results. Either ask reception for a printed copy. [With lab ranges]. Or set up online access to full digital record.

[Sadsacks in reply to PurpleNails]

Hi PurpleNails,

I was taking carbimazole for 18 months,I had blood tests regularly throughout my treatment but with having Graves’ disease we discussed my future and decided RAI would be best long term I took my capsule on the 6th of October 2021, January was my first check up since then my symptoms have been awful for about 2 months but I thought it was menopause!! I have all the symptoms for hypothyroidism so feeling really dreadful I’m really hoping 75mg levothyroxine will kick in very soon, my next check up is beginning of April.

I do have tummy issues but I have problems for many years but not constantly.

[FancyPants54 in reply to Sadsacks]

You need your next check up to be 6-8 weeks from starting the medication. It sounds like early April is too long. Arrange it yourself for the recommended time as you will almost certainly need a dose increase then. We always need to retest 6-8 weeks after a dose increase.

[Sadsacks in reply to FancyPants54]

Hi FancyPants54

Thanks for your reply, I’m not hugely impressed with my doctors follow up appointments I didn’t need to be where I am now but I haven’t had a face to face appointment with my endocrinologist yet!!

[FancyPants54 in reply to Sadsacks]

They killed your thyroid and left you to it. You should definitely not be impressed with them. Hopeless.

Do move that appointment forward. If they try to protest say you feel really unwell and need to check levels.

[Charlie-Farley in reply to Sadsacks]

Hi Sadsacks

Welcome to the forum 😊

The appointments that are given out by GPs are arbitrary time lapses and bear no relation to how your symptoms may re-emerge as you are brought to full replacement dose.

Read my profile- I was in range but symptomatic throughout my dose increases to get to a full replacement dose that was therapeutic. Many doctors do not actually understand how this works my summary of what I experienced will inform you going forward. You will know if your doctors are as clueless as mine.

I went strictly gluten-free and I’ve also noted certain things regarding food combinations. High carb, high sugar, high fat all combined, for example fruit crumble are off the menu now. I can however eat a chicken Jalfrezi with vegetable rice with no problems. 😊👍

Keep records and do not rely on patient access. Get printed results of every single thing (You are legally entitled do not be fobbed off by your surgery or consultant) and keep them in a file with any other notes you might like. I have a dossier, which is more complete and runs in date order.

On advising my local surgery that I had been undermedicated for the first six months some of my records went missing - however I had my printed records and I had also taken screenshots of my patient access prior to telling them , so could see the differences - cannot emphasise enough don’t rely on patient access! Keep reading on here other peoples experiences and this will really help you understand and deepen your knowledge.

Welcome to the gang!

[Sadsacks in reply to Charlie-Farley]

Hi Charlie-Farley

Thanks so much for your advice and welcome, I will definitely do what you suggest and I’ll keep you posted ☺️

[Charlie-Farley in reply to Sadsacks]

😊👍

[PurpleNails Administrator in reply to Sadsacks]

That’s quite a wait after treatment. This leaflet is often handed out by hospitals about treatment, did you have this or similar?

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

It says you should have had a blood test four to six weeks after the treatment and every one to three months until stable and once a year after that to check your thyroid hormone levels.

You may now be very hypothyroid, your blood test results will show. Replacement doses end up replacing levels not topping them up, so it is likely you will need increases. This is usually done in 25mcg steps (daily increase) then retest 6 - 8 weeks.

You may find strictly gluten free diet worth trialling. First while still on normal diet get coeliac blood test done this will rule out gluten allergy (coeliac).

If result is negative still consider trialing strictly gluten free diet to see if there is an intolerance (which a test would not detect). If after a few months or so no improvement try to reintroduce.

If GP unhelpful and refuses test, this test recommended (requires spot of blood) in home kit.

lloydspharmacy.com/products...

If positive you have a strong argument for GP to repeat unless GP accepts private result. (Depends on GP).

I wouldn’t worry about not having a face to face with specialists. I preferred telephone appointment as then I didn’t have inconvenience of traveling to hospital. When I did attend nurses did pre checks (BP etc before appointment & blood test usually done week prior) and doctors only ever looked at computer screen. Only ever glanced at me when passing leaflets which “should explain everything”.

[Sadsacks in reply to PurpleNails]

Hi PurpleNails

I agree it’s a long wait but the appointment for 6 weeks was cancelled !! She barely gave me 5 minutes on the phone I was so overwhelmed by my diagnosis I couldn’t really ask questions cause I was so shocked, she just said she had wrote me a prescription and that was that.

[PurpleNails Administrator in reply to Sadsacks]

That’s appalling. To have it cancelled and delayed by so long and to not give you further time other than to say here’s your prescription.

Unfortunately this isn’t unusual. Many of us are here because we are literally “left to it”. No Information given & so little follow up offered unless we learn to be proactive.

I recommend you get a diary and make a note of any new or changing symptoms, record any medication doses you take (& any supplements - alway start any new medications or supplements a week or 2 apart if possible). You can also make notes of when tests are due & when to chase up appointments or results. I also make notes things you plan to discuss with your doctor.& usually prioritise eg most important 2 concerns.

Most importantly get into habit of obtaining test results and learning how to understand them. This is the best way to see your progression and help yourself ensure your treatment from not on stays on track.

[Sadsacks in reply to PurpleNails]

That’s brilliant advice and I will start a diary tomorrow, I have had a look at my blood results but I’m going to write them down in my diary too so I can see how everything changes. Thanks again

[jools1213]

Hi. I was 51 when I had radioiodine treatment for Graves. When it started I had wrongly assumed it was the menopause, so it had free reign for a year before I realised something was wrong with my thyroid. When it was diagnosed my blood results were literally off the scale and they couldn't regulate me on carbimazole, I was on 60mgs of carbimazole and I was still very hyperthyroid so I went for RAI less than a year after diagnosis. After RAI it took me three years before I was stable on Levo, but I got there and have been on the same dose of Levo for ten years now. I had a good GP and Endo who communicated with each other and I was happy to tell them how I was feeling. I think that's what kept me sane, being able to talk to them. My bloods were normal and I still felt hypo so my GP sent me for another appointment with the Endo after I had been discharged and he took the time to explain to me that, because I had been so hypothyroid, my system was used to "running hot" and I probably missed the buzz. He was right. Keep going for your tests and accept that things might not settle as quickly as you want them to.

[Sadsacks in reply to jools1213]

Hi jools1213

Thanks for your reply, wow a year is a long time I’ve really struggled for just over two months couldn’t imagine feeling this bad for a year!! Thank you I will definitely not miss any checks just looking forward to feeling my normal ☺️

[Thyroidsam]

Hey Sadsacks, I had RAI back in Feb 19. I think I’ve finally got to the bottom of why I’ve not felt well since (I’m not converting T4 to T3 like I used to). So try and collate some of your old thyroid function tests from when you felt well so you can compare them to your post RAI results in the coming months. Had I found this forum a good while ago I would probably be many months ahead of where I am now. I’ve had a really frustrating 14 months trying to get well on the NHS advice alone….

[Sadsacks in reply to Thyroidsam]

Hi Thyroidsam

Thanks for your reply I will do as you suggest, I’m super happy to find this forum, I think it will help me a lot, it’s quite hard to explain how I feel to my family.

[FancyPants54 in reply to Sadsacks]

But you need to find a way. It is important that they understand just how poorly you are. The treatment you had for hyper has made you sick the other way and it will take time to recover. It makes me mad that they seem to not bother to tell you this will happen before they remove or radiate your thyroid.

Your thyroid is your battery. The energy pack. You have been unplugged. Tell them that. And then tell them that for the next year at least you need them to do a lot more to help themselves around the house (unless they are too young). Everyone needs a jobs list and yours needs to be the smallest of them all.

Read everything you can on this web site and then buy books about hypothyroidism and read them. You need to be one step ahead of the medics. In fact, that's so easy these days you need to be 50 paces ahead.

[Sadsacks in reply to FancyPants54]

Hi FancyPants54

Thank you so much for your advice I will give my medication a few weeks to start working but I will definitely do as you advise 😊

[Winterdrop]

Hello Sadsacks. Welcome to the Forum. You've come to the right place as there are many people on here with a wealth of knowledge about all things thyroid.

I too have Graves Disease and am currently on a low dose of carbimazole which I am stable on. As well as this forum, please also check out the Elaine Moore site. She is very knowledgeable about Graves Disease and there is much information about how to manage it after treatment with radioactive iodine on her site.

I hope you soon start to feel a little better.

[Sadsacks in reply to Winterdrop]

Hi Winterdrop

Thank you very much for the added information, really happy to be here with people like me😊

[pennyannie]

Hello Sadsacks and welcome to the forum :

Do you have your original diagnosis showing which antibodies, generally written as a TSI or a TR ab, were over range and your T3 and T4 blood test results when diagnosed showing over range T3 and T4 levels ?

Sorry you have had such a horrible time with it all.

The RAI slowly burns out your thyroid in situ, and it can be a bit more difficult to treat as this slow burn invisibly progresses but ultimately totally disables your thyroid function with you becoming totally reliant on thyroid hormone replacement as your gland atrophies.

T4 - Levothyroxine thyroid hormone replacement is a storage hormone which your body needs to be able to convert into the active thyroid hormone T3 as that is the hormone that runs your body and it is where your T3 sits in the range that will give you back your wellness.

Both hyper and hypo are the extremes ends of the same stick - too high a level of T3 for you and you may feel a little like when "hyper" and too low a level of T3 and you will experience the symptoms of hypothyroidism.

You can't become " hyper " again, you haven't a thyroid, but if being dosed and monitored on just a TSH blood tests in primary care you 're results may well look misleading and you must be dosed and monitored on your T3 and T4 blood test results and both these vital hormones need to be balanced, within the ranges at around a 1/4 ratio - T3 / T4.

Conversion of T4 into T3 can be compromised by low vitamins and minerals especially those of ferritin, folate, B12 and vitamin D - so please ask your doctor to run these for you at your 6 weekly monitoring and testing appointments and you need these core strength building blocks to be optimal and not just somewhere in a NHS range.

RAI is known to trash vitamins and minerals so the above core strength vitamins and minerals are essential to keep an eye on, and you may need to supplement to optimal yourself but will be advised of what and when if you share all your blood tests with forum members, some of whom have been there before you.

You might like to read up on the Thyroid UK website, who are the charity who support this forum and there are a list of private companies who will run blood tests for you if your doctor isn't able: there is also a list of hypo symptoms so to help you identify your symptoms.

Of course the Elaine Moore Graves Disease Foundation website is the most well rounded platform for this poorly understood and badly treated auto immune disease.

Knowledge is power and you will feel better knowing what is going on and having some voice and opinion in your care within the NHS service and especially in primary care where doctor's knowledge and ability to treat appear limited.

I too have had RAI thyroid ablation for Graves, back in 2005 and was immediately put on 100 mcg T4 - i was well for around 8 years and then became very poorly and by chance, and fortunately " fell into this forum " when researching low ferritin, my only NHS acknowledged deficiency :

P.S. When having a thyroid blood test - arrange an early as possible morning appointment at the doctors - fast overnight, just taking in water, and take your T4 - Levothyroxine after the blood draw.

If taking anything containing biotin, stop for around 7 days before the blood test as this can distort readings, and if not sure just stop any supplements for around a week so your results show what your body is actually holding onto.

Hope that helps you a bit with where you now are, rest up, look after yourself, it's not a race but a slow build back up to be being well and having your health restored through the help and shared knowledge you'll find on here from forum members.

[BAJKA]

Hi all,

I'm new too.... I don't getting any of the jargon (just learning). I'm struggling with it all, being diagnosed with Graves disease.... it all makes me feel miserable, depressed, irretable and have a lot anxieties.... odds that normal at all....?

I'm scared of radiotherapy....

Kind regards,

Bajka

[Sadsacks in reply to BAJKA]

Hi Bajka

I completely understand how you’re feeling it’s all very daunting hence why I joined this site, you’ll gets lots of useful advice and hopefully it will ease your anxiety 😊I took a radiation iodine capsule last October it was slightly scary but hoped it would fix my Graves unfortunately worked a little too well and took my thyroid under active, my advice is think very hard weigh up the pros and cons, hopefully I’ll be back to normal in a few weeks.

[BAJKA in reply to Sadsacks]

Thank you kindly ❤️

[Charlie-Farley in reply to BAJKA]

Hi Bajka!

Welcome to the forum. Start a new thread and introduce yourself. Give a brief summary of your journey thus far and if you have any questions post those and results. Make sure any results are posted with the ranges, but don’t post your personal info 😊👍. Do write your profile - mine is long, but it has been regularly updated.

You can search Thyroid UK by topic and I would strongly advise you to get up to speed with your condition so you can make informed decisions and not just be dictated to by poorly qualified doctors. Be patient with yourself as you learn -new topics take time to understand.

You only have to read a few of the forum members profiles to realise it is essential to understand your own condition and be prepared to stand your ground if you are being badly advised.

Welcome again. 😊👍

[BAJKA in reply to Charlie-Farley]

Thank you graciously.... how do I start a new thread.... 🤷‍♀️

[Charlie-Farley in reply to BAJKA]

Go to the top left of screen and click on green blob. A box will appear underneath saying - What’s your question?

Click in there and then decide is it a post or a question and click on the tab you want then fill in the form. You will get used to it even though it feels unfamiliar at first. 😊👍

[pennyannie in reply to BAJKA]

Hello Bajka and it's good to share and talk through whatever is concerning you :

We can help and support you as well and it will be better for you to start your own post.

You do not need to have to agree to the radiotherapy - the longer you stay on the medication the better chance you have of finding remission.

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

[BAJKA in reply to pennyannie]

Thank you, agree, I like the idea of being in remission.... ❤️

[BAJKA]

Be brave Sadsacks, you've inspired me ❤️