Hypo symptoms flare after RAI, anybody?

[Koola]

P.S. Would love to hear from fellow post-RAI sufferers. Has anyone also experienced a sudden accumulation of symptoms years after, like exhaustion, joint pains, swollen belly, tinnitus, brain fog &weight gain, eyesight change. (I think they're all covered...) I feel like I've aged at least 10 years in the last two!

[shaws Administrator]

I haven't had RAI but I would advise you (and am not medically qualified) to get your Free T4 and Free T3 checked to see if either are low in range. We need these towards the top of the ranges but they are rarely checked. Weight gain can be caused if we're on too low a dose and many doctors don't increase our dose of thyroid hormones. They seem to concentrate on the TSH alone, and this not a thyroid hormone - it is from the pituitary gland and rises when our thyroid gland is struggling.

Ask also for B12, Vit D, iron, ferritin and folate - all of which should be optimal and deficiencies can also cause symptoms.

Some doctors adjust doses due to the TSH alone but we feel better when it is around 1 or lower.

[Koola in reply to shaws]

Good evening Shaws, Yes, I know and have been doing all that. Been on this thread for 2 years and very grateful for all the info. I just wanted to address the issue of joint pain, that has increased.

[shaws Administrator in reply to Koola]

I'm sorry pain has increased and we would definitely want to know the reason.

[Batty1 in reply to Koola]

I had severe uptick of joint pain shortly after my thyroidectomy and was diagnosed with psoriatic arthritis. I still believe it has more to do with my thyroid levels being so low even on T3/T4 meds.

[Koola in reply to Batty1]

are you on Levo?

[Batty1 in reply to Koola]

Synthyroid and cytomel. (100/10)

[SlowDragon Administrator]

Common for conversion of Ft4 to Ft3 to get worse the longer you are in levothyroxine....essential to regularly retest FULL thyroid and vitamins

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

What vitamin supplements are you currently taking

Please add latest results and ranges if you Have them ...or come back with new post once you get new test results

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially after RAI

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins ...cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

[Koola in reply to SlowDragon]

Hello Slowdragon,

Here are yesterday’s labs. I have an appointment with a new endo. after tomorrow, only just found out. I need advice quickly because I couldn’t talk with her on phone too long. I fear that she, like the other 3, will just say, It’s fine and just take a little more (or less) Levo then phone back in 6 months. ( I live on a Greek island and the endos are few and far between, as they don’t come over often.) She might be able to assist me if I should switch to NDT.

I’m on 88mcg Levo,a Greek brand. Also supplementing with B Complex, Vit. C &Iron supp. , Vit D., K2 and Magnesium, as these were low when tested beginning of July. (Folacin was good. )

I’m not feeling better at all, whatever the labs say. Do you think I should switch to NDT or add T3?

TSH: 1.43 -- range is 0.20 – 5.00 -

3 previous tests March & May & June 30: 9.27 / 2,63 / 1.80

FT3: 3.24 – range is 1.8 – 4.5

3 previous tests March & May & June 30: 4.56 / 3,59 / 3.01

FT4: 11.3 – range is 7.0 – 20.0 –

3 previous tests March & May & June 30: 9.8 / 10,3 /14.09

Hope you’ll find time to answer and if not I can repost. Also, need to add that I don’t get these visits covered by med insurance. On my first brief call with endo. she didn’t seem convinced that I should test FT3 and FT4, but when I mentioned I had had RAI, she agreed. I allow that her English might not be perfect. But I’m reluctant to pay good money to be told to just tweak my dosage…

Thanks for your time!

[SlowDragon Administrator in reply to Koola]

88mcg is a low dose

Push for slight increase in levothyroxine

You have plenty of room in Ft4 and Ft3 for increase

Do you always get blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Remember to stop taking vitamin B complex a week before ALL blood tests as biotin can falsely affect test results

Marz may have some practice advice on Greek options ....T3 is usually available in Greece ...though increasingly might need prescription

[Koola in reply to SlowDragon]

I don't need a prescription for anything here. Yes, to all of the above. (water, biotin etc,)

what would a slight increase look like? 100mcg every 3 days? should I take T3, like 6mcg a day? a few hours after Levo?

Also, I've been having swollen belly & joint pains that some patients on this site attribute to Levo. that's why I was wondering about NDT. I actually ordered some last year, Thai.

[Koola in reply to SlowDragon]

PS. Hope I’m not being too pushy or lengthy, but as you see, I don’t need the endo. for any prescription. And after joining H.U. 2 y. ago and getting so much better advice than I ever got from anybody in the medical profession, I am wondering if I should see one more endo. that I haven’t been able to talk to long enough to find out if she’s like the other ones.(“TSH” only etc.)

[SlowDragon Administrator in reply to Koola]

When were vitamins last tested

They need to be at good levels before starting on any T3

If considering adding T3 start with just 6.25mcg (1/4 tablet) in morning....or even as 1/8th tablet am and pm

After a week or so...assuming going ok ...add second 1/4 tablet

Hold at that dose for minimum of 6-9 weeks before getting FULL Thyroid test

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

If/when also on T3 (or NDT) make sure to take last half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

[Koola in reply to SlowDragon]

Thank you so much for all the info, Slow Dragon!

Vitamins last tested 30 June. Vitamin B was mid-range and was told here that it should be upper. Vitamin D was very low. Iron & ferritin low. Had no idea that they had to be at good levels before starting T3.

My last endo agreed that I try T3 last year, without mentioning any vitamin testing (ever, neither before nor after). I took T3 for about 3 months with no significant improvement, for me, but when T3 labs went up a bit he said to take it only every 2 or 3 days. When I posted a question on your site, two people commented that he didn’t know what he was talking about, because T3 needs to be taken every day. So I stopped consulting him (by phone, no way could I make it into Athens). Lengthy, but I want to express my gratitude for all you do on this site!

I was told that I should wait 3 months before testing Vitamins & iron. So, re yr. previous answer about increasing Levo dosage, I’ll first try going slowly up to 100mcg Levo only, test again in 5 weeks and see what gives. If no improvement, will get on to T3 or NDT.

I wish you a pleasant evening.

[SlowDragon Administrator in reply to Koola]

Most endocrinologists aren’t remotely interested in vitamin levels other than to test for actual deficiencies

But patients have learnt (often the hard way) that we need GOOD vitamin levels for levothyroxine or T3 or NDT to work well

You will see as many posts, or possibly more posts on here discussing vitamins and how to improve...as posts about thyroid levels

After RAI low vitamin levels are extremely common

Also common to find that strictly gluten free diet helps or is essential

[Koola in reply to SlowDragon]

Thanks again! I’m sure I’m not the only one for whom this site is a life-line, especially when living isolated. Thought I’d let you know that when I decided to cancel appointment with endo, I tried phoning the local hospital asap, where she comes every 6 weeks, so they could give the free slot to some other sufferer… Only reached them late this morning and was told that she had cancelled and was only coming Monday. Naturally, no one would have informed me… All the decision-making, then trouble of getting there at a time when I have zero energy, waiting around etc. for zilch! I had to chuckle. Happens so often that what we worry about the most turns out well (unfortunately the opposite is true too! Re- RAI) My chuckle was more of a snort, though…

I will read up on vitamins and also see if I find other accounts of times when others’ energy drops. I’m not entirely house bound but here all offices close at 14:00 and I’m almost always incapacitated till midday.

Rereading your answers carefully, I saw a point I’d skipped about brands of Levo, and so I will “pick your brains” once again: in May 2019 I was told to take Tirosint, because no fillers. I didn’t get better and it felt much stronger than the other brands whenever I tried to increase the dose. When I switched back to Greek brand I first felt better, less hyper, able to sleep in the day when tired. Then back on downhill slide. I read a post here of someone who was alternating brands in England, don’t remember names, and felt good. So I’ve been taking 75mcg Tirosint and 88mcg Greek T4, increasingly the 88. (till 75 Tirosint once a week; 88 was too strong.) Posts about Tirosint are all so different, a blessing to some, a poison to others.

Following your advice I’ll slowly switch to 100 mcg. Gr. T4.

Should I drop Tirosint totally, or try out alternating with 88 Tirosint?

Thank you for your patience. 

[Lora7again]

Have you seen Elaine Moore's site? She had RAI and might be able to advise you.

Here is a link

elaine-moore.com/

[Koola in reply to Lora7again]

Thank you, Lora7again, will check!

[anjuliet]

Yes, I had RAI 20 years ago and yes joint pain became prominent about six years ago. Was diagnosed with osteoarthritis back in 2015.

[Koola in reply to anjuliet]

So was the osteoarthritis the result of RAI? what do you take for it?

[anjuliet in reply to Koola]

Tbh, I don't know, but the rheumatology consultant couldn't care less and told me that there's nothing that can be done about it.

[Koola in reply to anjuliet]

Thanks for the confirmation. I gathered that much by asking people who had osteoarthr., with no thyroid issues. So, back to square one. If thyroid meds. are finally right, then it should disappear.,, Hope lives eternal.

[pennyannie]

Hello Koola

I believe my thyroid fully died about 8 years after RAI for Graves Disease as that was when I became seriously unwell and undermedicated on Levothyroxine only at just 100 / 125 mcg daily.

I am now taking NDT, self medicating and feeling much better and not housebound anymore.

However, I can't tolerate the sun and UV light and during the summer months my black out blinds stay down, and I'm very rarely out in the heat of the day as it is as though it sucks everything out of my body and leaves me full of unnecessary aches and pains.

I think we have spoken before and if not, check out the Elaine Moore Graves Disease foundation website - it's validated my concerns and has very many interesting subsections as Graves does appear to be a poorly understood and badly treated autoimmune disease which isn't solved by drinking a toxic substance, simply compounded.

[Koola in reply to pennyannie]

Hello Pennyannie,

I was puzzled by your "my thyroid fully died". I thought RAI completely killed it, to put it plainly. If not, does that explain why hypothyr. starts up slowly, years later?

I'm waiting a few weeks till my next labs and if my vitamin levels are better but I don't feel any better, I'm thinking of trying T3. I ordered some NDT last year. Tried it once and felt terrible, but now I learnt here about vit. levels. Did you go straight from Levo to NDT?

To what do you attribute your intolerance to the sun? For me it would be a hard trade off because living in Greece, I'd be just as housebound... though feeling good at home is better than not feeling good and being almost housebound therefrom...

Also, I've noticed that if I stay out too long at midday, I get even more tired and onto the next day, like today. Many questions to you, hope you don't mind!

[pennyannie in reply to Koola]

RAI is a slow burn and it can take many years to fully take effect and I read the dose necessary is not an exact science.

All my issues started around 8 years after ingesting this toxic waste and well described in Elaine Moore's first book Graves Disease - A Practical Guide - symptoms similar to Sjogren's can be experienced by some people after RAI : that was me :

RAI also cased me, around this same time, to develop Thyroid Eye Disease and this condition, in bright UV sunlight, is simply not a good place for me to be :

I also feel as though the sun drains me of any energy and the following day I'm worse for wear with my body aching more than is normal :

Maybe it's not related and just me - but I do know how I used to be and it's not how I am now : there it is :

I thought since this all happened some 8 years after the event maybe it wasn't related as I was referred to as a conundrum by my doctor after exhaustive NHS investigations and with only having a very low ferritin as a diagnosis of anything, started my own research into my own health, as by this time I was housebound with no real answers from any medical professional.

However having contacted Elaine she wasn't dismissive but accepting and suggested that the TSH range doesn't go low enough for some Grave people, and that we need to be kept suppressed as there are real risks of RAI/antibody mutations within the thyroid gland and as the gland dies these can filter into the blood stream, and yes, it can happen many years after the treatment.

Through advice from this amazing website I've built my vitamins and minerals back up to optimal levels, I also supplement adrenal glandular and now self medicate with NDT.

I did try a T3 / T4 combo and that immediate turned my brain back on and knew I was going in the right direction - I couldn't maintain the supply of the T3 I liked - Greek Uni-Pharma funnily enough, so tried NDT and it's softer on my body like a pair of slippers rather than shoes, two sizes too small.

I hope that answers some of your questions

[Koola in reply to pennyannie]

Wow! Thanks a mil', pennyannie

Right now I'm in the hell of exhaustion and not being able to sleep. But your words gave me some hope. Especially that my brain might finally function normally again! will send you a sign when I'm up and running again...

[Koola in reply to Koola]

PS. Brain fog again, forgot to ask : how long did it take for you to notice positive T3 effect ?

[pennyannie in reply to Koola]

Literally overnight !

I was on 125 mcg T4 - and slightly over range with a T3 of 4.5 :

I dropped 25mcg T4 and added 6.25 - 1/4 tablet of Greek Uni -Pharma Liothyronine -

I took the dose at around 3.00 am early morning ;

I woke up a couple of hours later without a heavy dense head, and without anxiety :

My brain had been turned back on - and I was calm and felt relaxed, and all of a sudden I didn't need to read everything out loud, three times over, in an attempt to understand content :

I am dyslexic so that brain fog had severely compromised my cognitive functions :

P.S. No thyroid hormone replacement works well until vitamins and minerals are maintained at optimal levels :

[JaclynB]

Yes. Exact same with me. I had an ablation in 2011. Horrible ever since. Life has never been the same.

[Koola in reply to JaclynB]

sorry to hear that. Are you on Levo, NDT, or Other?

[Koola]

Hi Scrumbler, I tested adrenals. Seem fine... what do you take?

[JaclynB]

I’m taking Synthroid. I tried Armour thyroid once and it made me feel worse

[Koola in reply to JaclynB]

same here with NDT from Thailand. Now I'm working on getting vit. levels right.

[Koola in reply to JaclynB]

Hi again, I found yr, post on Tirosint, dated 5 months ago., and answered. In case you didn't see it.

[JaclynB in reply to Koola]

Thank you. I saw it. It’s such a struggle

[Koola in reply to JaclynB]

Are you feeling better?

[JaclynB in reply to Koola]

No I am not. I feel like I’m so old and I’m 39. I get so many joint pains it’s crazy. I’m so tired too. Brain fog too

[Koola in reply to JaclynB]

Same here! For joint pains I'm now trying 7 by Solgar, seems to help some. I've also taken Glucosamine and MSM. It reduces it a lot but as soon as you stop, it's back again A friendly fellow sufferer recommended capsules with pure tumeric, that did it for her. Can look it up, if you're interested.

[HypoFrog]

Yes! I feel I’ve aged 30 in the last 10!! Had RAI in 2011 and recently posted blood results on here which showed hashimotos. I’ve now got a referral to the hospital but have to wait til November. My vitamin d was low a while back so I now take a high dose every day. Latest bloods also showed low vitamin b12 and bad t4 to T3 conversion. I know that thanks to the amazing people on this forum!

So defo get tested for everything. Mine was a private blood test with blue horizon.

[Koola in reply to HypoFrog]

Good luck, HypoFrog, let me know when you get better! (and how it happened) . I also take Vitamin D & B complex. I'm considering trying T3 when my vit. levels get better.

[HypoFrog in reply to Koola]

Keep us posted and good luck too!