Anyone had RAI or thyroidectomy for recurrent c... - Thyroid UK

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Anyone had RAI or thyroidectomy for recurrent chronic thyroiditis?

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Hello all and happy holidays.

I don’t expect a reply as everyone will be busy but having had a 2 recent thyroid ultrasounds, the consultant radiologist said I had chronic thyroiditis which probably has been going on for quite a long time (don’t I know it- 2 months off work and still waiting for my body to get a grip).

I had a severe bout 2 years ago causing me to be very poorly as well as 2 months off work then. I’ve finally been put for an urgent referral to NHS Endo. This time, my T4 went over range (it might have happened before) and my T3 is low in the range (I know I’m a poor converter and currently on monotherapy Levo 125/100mcg alternate days having reduced from 150 each day 4 weeks ago).

2 months on and it’s clear I still have an angry, inflamed thyroid. I’m hypo and Hashi confirmed by antibodies 2 years ago and still now.

My question is: how many times does this have to keep wrecking my life? I was interested to know as this is clearly a very damaged thyroid, at what point will they knock it out of play with RAI or thyroidectomy? Has anyone had experience of this?

A previous reply from a member a while back explained that at some point it will kill off my thyroid, but honestly I don’t think I could take another bout. I’m tired of waiting for this to settle.

Also, I’ve heard steroids can reduce inflammation? Has anyone been given this treatment for chronic thyroiditis?

Long post, apologies. I’ll not include my recent bloods as they are basically all over the place- had NHS ones, private and via medichecks in last 2 months. Suffice to say my thyroid is all over the show. For example one T4 was at 25 (range 11-22) then next at 18.

Thanks and enjoy the Christmas break everyone!

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42 Replies

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PurpleNailsAdministrator3 years ago

Has your doctor discussed surgery or RAI as a potential option?

I get your logic of removing the thyroid (the victim of the attacks) but either intervention is a permanent & irreversible step and not without added potential risk.

• in reply toPurpleNails3 years ago

Hi PurpleNails Thanks for your response. I’ve not yet seen the Endo and my GP has been honest and said it has to be treated by a specialist. I hear what you are saying and can see from other posts that trying to get levels right after are equally difficult at times. Desperation I think on my behalf and frustration but likely what a lots of members on here feel on a day to day basis.

It’s not an easy ride, all of it.

Thank you 🙏

Delgor3 years ago

Sorry to hear Butterfly that you are feeling poorly with thyroiditis. If you look to the right of your post you will see there are related posts in connection with recurrent thyroiditis which may be of help in the interim. From what I have gathered here on the forum RAI can actually make TED worse if you do eventually consider this as an option but you should perhaps wait and see what othes have to advise.

• in reply toDelgor3 years ago

Thanks for the pointer Delgor and for your reply. I’ll have a browse and see what other members experienced. It’s a tough one all things thyroid! I can see that now. 🙏

Kimkat• in reply toDelgor3 years ago

What is TED? I have had RAI.

Delgor• in reply toKimkat3 years ago

Thyroid Eye Disease. If you look at Pennyannie's replies you will see that some people suffer from this quite badly after RAI treatment.

Kimkat• in reply toDelgor3 years ago

I too have had eye problems , I was told I had blepharitis. I was advised to use dry eye drops and to keep my eyes clean etc

helvella• in reply toKimkat3 years ago

But make sure the ones you use do not contain preservative!

Many of us can tolerate a preservative for a while, but when we use drops regularly, we can become sensitive to it. Then using the drops makes our eyes worse (though it feels good for a few minutes).

Many use two products - a nighttime one which is often thicker, and a daytime one which has little effect on vision.

Delgor• in reply toKimkat3 years ago

Hi Kimkat, I've also been given the same advice as you and I've never had RAI but TED can occur independently of whatever thyroid disease you may have. I went badly overactive years ago with a goitre and had a partial thyroidectomy with no eye problems at all but since going overactive again a few months ago with yet another multi nodular goitre I've experienced mild eye problems and very much hoping it will stay that way. I'm also on a learning curve and listen avidly to the experienced people on this forum whom I have more faith in than any endocrinologist! Having just seen Helvella's post to you I've learnt even more in that perhaps it isn't a good idea to use drops regularly....

helvella• in reply toDelgor3 years ago

It is better to use them regularly as otherwise you can cause real, permanent damage. Just no preservative!

Delgor• in reply tohelvella3 years ago

👍

Kimkat• in reply toDelgor3 years ago

If I don’t use my eye drops at least twice a day, I can barely open my eyes after sleeping, they feel as if they have sand in them and get extremely sore. In fact last night I forgot to put my drops in and I was in so much soreness and discomfort, I was squinting until I could get my drops in. I am supposed to use them 4 times a day but rarely do.

Delgor• in reply toKimkat3 years ago

Yes, I obviously misunderstood Helleva in as much that they should be used regularly but not ones with preservatives in which I certainly didn't know about but at least we are all learning from each other which can only be a good thing.

😀

pennyannie• in reply toKimkat3 years ago

Hey there again :

Yes I was diagnosed with blepharitis by an eye consultant.

My doctor referred me around 6 years after RAI and was given to understand I wasn't cleaning my eyes properly, given a lesson on how to clean my eyes by the eye consultant who then continued to prescribe the same drops and ointments I was already using.

I didn't get any relief until I read on the Moorfields eye hospital website that you need to be prescribed PRESERVATIVE FREE eye drops, lotions and potions and purchased through their then website alternatives to what I had been given through the NHS.

My eyes issues cleared up, and I then showed my doctor what I had been using and had it prescribed on the NHS. - though now rationed so I need to top up myself when my eyes need more than one drop each a day !!!!

I also asked my doctor to mention to the consultant how improved I was because I'd switched to preservative free and this information might just help other patients.

Please just be sure everything you use, whether it be drops, lotions, potions or that gunk at bedtime that gives you " cloudy badly focused dreams " !! all are Preservative Free :

Delgor• in reply topennyannie3 years ago

Thanks Pennyannie for coming along and explaining everything in more detail. I haven't seen any eye consultant but it was my optician who gave me wipes which did clear up the problem (I've no idea if they had preservatives in or not) but would be grateful to know the name of the drops that you found good.

pennyannie• in reply toDelgor3 years ago

There are so many available and think you may find you need to switch products from time to time anyway.

I am using Rayner - Hydromoor - single unit dose capsules :

I started buying these from Moorfields Eye Hospital but have a feeling their " shop " isn't there anymore and now go through Butterflies Eyecare UK where you can be spoilt for choice.

Fortunately I haven't needed to use any gunkier overnight ointments for a good few years :

Well yes, the ointments will work whether they have preservatives in them or not.

BUT overtime with constant use, it's harder to remove those with preservatives from your lash base causing further problems .

Delgor• in reply topennyannie3 years ago

Thank you so much Pennyannie as always!

Kimkat• in reply topennyannie3 years ago

Yes I too found that the nighttime drops were too thick and weren’t helping my problem at all. Since stopping them my problem has improved slightly but I do depend on the daytime drops or I’m in trouble.

pennyannie• in reply toKimkat3 years ago

Well yes, use as you need as long as they are " preservative free " you won't get any build up of product in your eye lash base that can block tear ducts exacerbate the symptoms.

Kimkat• in reply topennyannie3 years ago

I saw an eye consultant with mine and he told me to never go to bed with makeup on, which I don’t but to wash around the eye area thoroughly and throw away the rubbish that specsavers had suggest I use! I buy my eye drops from ss though, as far as I can see they are preservative free and they do hold it at bay. I do use an eye cleaner periodically, which is soothing also.

pennyannie• in reply toKimkat3 years ago

As responded above to Delgor - I now buy from Butterflies eyecare uk :

Kimkat• in reply topennyannie3 years ago

I’ve just had a look on their website pennyannie and they sell the products that I buy from specsavers but they are all more expensive, just thought I would let you know 🙂

pennyannie• in reply toKimkat3 years ago

Thank you :

greygoose3 years ago

Basically, it's tough because doctors know nothing about it. They do not know how to treat hypothyroidism. But, TT and RAI are not normally considered necessary for Hashi's, because - as you said - the disease will normally destroy your thyroid anyway.

So, that said, what you have to do is learn about your own disease and take charge of your treatment.

If you are a poor converter, increasing and decreasing your dose of levo is not going to help very much. What you need is the addition of T3 to your levo. That is hard to get hold of for several reasons. But, there's always the possibility of buying your own. That would probably solve an awful lot of your problems.

• in reply togreygoose3 years ago

Thank you Greygoose I’m assuming I’d need a private prescription if my NHS Endo won’t prescribe- I’ve not seen them yet but this is what I’m hoping for. I have got the list from thyroid Uk of ones willing to if needed.

Happy holidays 🙏

greygoose• in reply to3 years ago

It would be cheaper to source your own on-line, if you can.

• in reply togreygoose3 years ago

Thanks 😊 I wasn’t sure if you could do it that way 👍

greygoose• in reply to3 years ago

Well, an awful lot of us do.

pennyannie3 years ago

Hello Butterfly:

Knowing what I do now, I wouldn't recommend anyone have RAI :

Removal of the thyroid through surgery has to be the cleanest, and most precise of the treatment options but living without a thyroid isn't a simple as you may think.

I 'm sorry your life is being so disrupted by your current health issues but removing the offending gland doesn't necessarily solve your problems and may simply compound them.

Routinely the treatment for primary hypothyroidism is undertaken by your local GP surgery and you are managed and dosed on a TSH yearly blood test which doesn't actually give enough information to dose and monitor on.

If and when you find T4 monotherapy doesn't actually restore your health and well being, you'll likely be offered anti depressants as doctors in primary care can only prescribe T4.

Should you enquire about a more complete thyroid hormone replacement, like adding in a little T3 - Liothyronine into the mix, or even suggest Natural Desiccated Thyroid you could be up against a brick wall and even if you manage a referral to an endocrinologist who needs to sanction your suitability for a trial of either T3 or NDT you may not get anywhere.

I have Graves Disease and had RAI ablation in 2005 and became unwell in around 2014 .

After around 2 years of various fruitless O/P appointments for everything other than thyroid and referred to as a conundrum by my doctor I found this forum and started reading up on all things Graves , thyroid, and RAI treatment.

I did manage a referral to endocrinology but was denied any other thyroid hormone replacement treatment .

I now self medicate and am dealing with lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism.

Both additional treatment options worked and I have chosen to stay on NDT as it feels softer on my body and am now much improved.

It's not the same as having my own thyroid - but it's the best option for me.

If I could go back in time and had a choice, I'd have picked to stay on AT medication and keep my thyroid.

• in reply topennyannie3 years ago

Thank you pennyannie! It sounds like you’ve been through the mill and I’m sorry you’ve had this. I’m glad things have improved and honestly I think I’m going to be in the same boat with having to self medicate/ sort myself out. It seems unlikely they’ll give me a trial T3 as I can already hear them saying I’m in range in T3 so what’s the problem??

I think I’ve been naive thinking no thyroid would be easier. I’ve also not been tested for Graves so I’m going to ask if this can be done at the first appointment.

I think my biggest worry is not being fit for work, aside from it impacting on other areas of my life. I’m sure this has affected countless others. I’m shy of early retirement by 18 months but I’ll just have to wait and see. Trying to keep faith and hope.

Best wishes and thank you 🙏

pennyannie• in reply to3 years ago

So do you think you may have Graves Disease as well as Hashimoto's ?

The antibodies unique to Graves are either a TSI - a thyroid stimulating antibody and or a TR ab - a thyroid receptor blocking antibody.

At any one time either of these antibodies can be raging and vie for control of your thyroid and in some instances they balance themselves out, the " blocking " blocking out the " stimulating " , if you get my drift, and you are left in limbo as this disease progresses.

So there are some similarities to how Hashimoto's progresses which is why it's essential to have the medical evidence of which over range antibodies you are dealing with.

The main difference is Graves is medicated with anti thyroid drugs to block the T3 and T4 keep rising further whilst with Hashimoto's the T3 and T4 don't tend to go so high and automatically drop down by themselves but likely leaving you more hypo than before the attack.

It's all a question of degree and yes, ultimately with Hashimoto's your thyroid will become so damaged you too will be needing full spectrum thyroid hormone replacement.

There are some patients who have Graves running as well as Hashimoto's and Graves is considered life threatening if not treated and takes precedence over Hashimoto's.

• in reply topennyannie3 years ago

Thanks pennyannie.

The antibodies were done when I was first diagnosed hypo by private GP bloods- 2 years ago- thyroidglobulin and thyroid peroxidase antibodies both in the hundreds and well over lab range. I’m assuming this indicates Hashimoto’s?? I’ve checked both and I can’t see the others you mentioned so I’m thinking it’s worth me getting this checked. I don’t know re the Graves but I’ve had problems with my eyes for a while. Felt like eye strain, dry, gritty and at times blurred double vision. I know this can happen with Graves but wondering if TED also possible when hypo?

I also had antibodies checked on my recent thyroid bloods from medichecks and both over range again. My T4 only went to 25 (top of range 22). I know this is small fry. My toes curl when I see some other members over range T4 on here- but I felt notably ‘hyper’ and very ill-body tremors, insomnia, burning body sensation as if I had a temperature etc and feeling like I was losing my mind having some sort of ‘episode’ at times. I think I must be ridiculously sensitive to even slight changes in my levels, but also the thyroiditis will be playing in and I’m not sure what stand alone symptoms this has as well as feeling hypo & ‘hyper’ within hours.

pennyannie• in reply to3 years ago

Well if you want to rule it out Graves, Medichecks does the antibody test for TR ab :I believe it's quite expensive but you should find it on their website.

Hashimoto's is transient and will give you both symptoms of hyper and hypo in relatively quick succession compared to Graves.

Graves is continuous hyper and has to be medicated with AT drugs.

However we are all different and everybody's experience unique too them ;

Hashimoto's can be very " bumpy " ride and as you say ultimately you'll loose the gland's ability to support you so why not speed things up and get back to normal :

Sadly the aftercare for primary hypothyroidism isn't great :

Doctors hands are tied with regards to which blood tests and issue of prescriptions they can action, and please don't get me started on the guidelines, ranges and the TSH .

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

and so why is it still the first treatment option encouraged and suggested by hospitals the endocrinologists and the medical profession ?

• in reply topennyannie3 years ago

I feel the same: why RAI when the other options have more ‘positive’ outcomes? It seems to be all over the place doesn’t it? It seems to me that it’s just a lottery as to what treatment you get depending on the individual medic. So frustrating. I’m not surprised so many on here self medicate. If I could have it taken out, I know it’s not an easy ride after but the sporadic spewing of thyroxine is making it nigh on impossible to get any kind of normal.

I’m all honesty, I’ve never felt entirely ok even when I recovered from thyroiditis flair 2 years ago, was just happy I didn’t feel ‘that’ poorly. And that’s not good enough, is it? I’m sure I need to reduce Levo and add in T3. I’ll give the NHS Endo a go first and then make a decision.

🙏 for your detailed replies- it really helps! And I’ll look at medichecks for the TR ab.

pennyannie• in reply to3 years ago

Do you have any blood tests to hand ?

Ideally we need results and ranges of a TSH, T3 and T4 antibodies, inflammation, and ferritin, folate, B12 and vitamin D :

If you can calming down your immune system response this should in theory reduce the severity of the " attacks " you experience.

I read many people finding the research of Dr Izabella Wentz useful as she too has Hashimoto's and writes about first healing the gut by eliminating certain foods such as gluten, dairy, wheat etc. an repairing the " gut wall " so you are better able to absorb essential key nutrients from your food and fully utilise the thyroid hormone replacement.

We are all a work in progress and I'm afraid " progress on thyroid treatment " within the NHS mainstream poorly understood and why so many of us end up self medicating.

Read up, become more confident in yourself and when you feel able, if you too fail to get the treatment though the normal channels you'll find support on here to DIY .

• in reply topennyannie3 years ago

Thanks Pennyannie I can see this is where I’m heading re self treatment. And I’m

Going back to GF from today as can feel inflammation in my system. I’m taking Neproxen for joint pain atm but do think it might be helping to reduce some but definitely not all the inflammation in my thyroid.

I’m due to get new bloods via medichecks but holding off till first week in Jan as they’ve recommended not posting over the holiday, so I’ll put my latest up when they’re through.

I’ll be interested to see where levels are but in particular T3.

pennyannie• in reply to3 years ago

OK then -

Start a new post with the current results and ranges in the New Year - and it sounds like you have just made an " early New year resolution " - going back to gluten free !!

One step forward and let's hope there are more to follow in 2022 as some of us already have footprints on a similar path.

• in reply topennyannie3 years ago

Aww thank you Pennyannie you’ve helped more thank you could know! I’ll be back with results and any developments with the Endo but will start a new post to get some feedback on bloods. 🦋

Kimkat• in reply to3 years ago

RAI was (I was led to believe) my only option, as I had fast growing nodules and already had surgery prior to RAI and the surgeon wasn’t comfortable going in again to remove my whole thyroid, so I didn’t think that I had any choice 🙁

humanbean3 years ago

It would be worth experimenting with making changes to your diet. Only change one thing at a time though.

Going 100%, religiously, gluten-free helps an awful lot of people with thyroid problems. According to Izabella Wentz about 85% of people with thyroid disease get benefits from going gluten free, but only 5% of them actually suffer from coeliac disease. In most cases it would appear that people with thyroid disease are intolerant of gluten, rather than being allergic to it, so it is well worth trying the experiment of going gluten-free.

When I gave up gluten I got benefits in about 5 days, and I had previously been tested and been found NOT to be coeliac after thorough testing.

Other possible contenders for the cause of your thyroiditis are intolerance to lactose, histamines, soya, nightshade vegeatables ...

• in reply tohumanbean3 years ago

Thank you for this. I‘ve been tested and negative for coeliac.

I literally tried 4 days and my stomach settled immediately but it has slipped over the last few days, largely as I’ve been at my daughter’s and away from ‘my food’. You’ve motivated me to get back on it. I’d panicked a bit as I seem to have lost even more weight so I’ve been on the pasta and mince pies 🙄. I’ve done a shop though and bought GF so you’ve given me the kick I needed. Even in a few days, I felt as if my system was ‘calmer’. I’d do anything to reduce symptoms.

😊

What symptoms dissolved for you do you think with the GF humanbean?

humanbean• in reply to3 years ago

I had less of the following :

Bloating

Wind

Constipation

Diarrhoea

I also had a much, much, MUCH better temper. I just mentally calmed down enormously.