Losing my will to live due to thyroid disease

[Gillypop]

My Graves’ disease has been in remission for 15 year until I spent most of last year over active then I was rushed to hospital in October with a heart rate 225. Put on propranolol and Carbimazole. Now it seems I have gone under active, feel worse than I ever have, catch every bug around, loss my sense of smell and taste and generally exhausted for 80% of my day. Is life worth it when I feel this bad? No one understands and Drs couldn’t care less with the state of the nhs. I’ve lost my life to thyroid disease 🥲

[Buddy195 Administrator]

I’m glad you’ve reached out to us Gillypop; we are here to help & support. Can you share your most recent thyroid blood tests/ medication & dosage, so we can offer better advice.

[Gillypop in reply to Buddy195]

thank you, another blood test due next week.

I was put on 10mg Carbimazole in Nov and then lowered to 5mg in January.

March Carbimazole lowered to 2.5mg and I’m feel the worse I’ve ever felt ☹️

March 2024

[Gillypop in reply to Gillypop]

after being admitted with a heart rate of 225 bpm. Placed on propranolol

November 2023

[pennyannie in reply to Gillypop]

OK - now see the November bloods and I spy a TRab and a low suppressed TSH so indicative of Graves :

Your T4 was in range - 54% - really curious as to what your T3 reading was -

But again no T3 - which is annoying as that's the active hormone we should be tracking your progress on :

Are you still taking the Propranolol as that actually slows down the process of the T4 converting into T3 ?

[pennyannie in reply to Gillypop]

Was your TRab rerun this time - as with Graves the TSH is generally low suppressed at around 0.01/2 :

A TSH over 3 generally indicates symptoms of hypothyroidism creeping in - so at 8.50 I would think you very hypo - and your metabolism now slowed too much by the AT drug.

Your T4 is only 41% through the range - unfortunately we have no T3 reading -

T4 is a pro-hormone and needs to be converted in your body into T3 which is the active hormone that runs all your bodily functions - from your physicality, through to your mental, emotional, psychological and spiritual well being, your inner central healing and your metabolism.

It is too low a level of T3 for you that causes all the symptoms of hypothyroidism - just as too high a level of T3 for you will cause symptoms of hyperthyroidism.

Suggest you cut the 5 mcg into half and take 2.50 mcg a day and see how you go -

When metabolism runs too fast as in hyper or too slow as in hypo the body struggles to extract key nutrients through food no matter how well and clean you eat - and non optimal levels of ferritin, folate, B12 and vitamin D can compound your ill health further then necessary.

Your ferritin, folate and B12 - all need supplementing - and you need to be aiming for around a good 50% through their ranges - with some ranges too wide to even be sensible :

Is there a vitamin D reading there somewhere ?

I now aim for a ferritin at around 100 - folate 20 - active B12 125 ( serum B12 500 ++ ) and vitamin D 125:

[Gillypop in reply to pennyannie]

I’ve been on 2.5mg Carbimazole for 4 weeks now.

[pennyannie in reply to Gillypop]

Oh - sorry - ok - maybe impossible to chop this again - what about taking 2.50 mcg every other day ?

[Gillypop in reply to pennyannie]

Yes maybe. I’m booked for another blood test tomorrow. My head is just so foggy with it all x

[pennyannie in reply to Gillypop]

It will be hypothyroid brain fog and come with the territory,

and it's too low a T3 for you to function properly that causes the thick foggy head -

The brain and heart take the lions share of T3 -

I thought I was dealing with early onset dementia around 2015/6 which was when I started reading up on Graves through Elaine Moore and on this forum and learnt that we can't even get the appropriate blood tests through our primary are providers and we need a Free T3 and Free T4 drawn from the same blood sample to understand what is actually going on.

Maybe try tomorrow to get Free T3 and Free T4 run - and what about your vitamin D ?

[pennyannie]

Hello Gillypop :

I have Graves but without knowing much and in a state of shock - treated with RAI thyroid ablation in 2005 - one year after diagnosis - though very well on the AT drug Carbimazole - but told at my very first endo appointment that the AT drug was too dangerous to stay on long term and that I was to have RAI the following year.

I deeply regret RAI treatment and more ill since and treatment for primary hypothyroid dire.

Having been refused any treatment option on the NHS I now self medicate and buy my own thyroid hormone replacement, run my own private thyroid and vitamin and mineral blood tests and manage myself and am much improved since I decided to jump ship and Do It for Myself in 2018.

We are looking at an Auto Immune disease and simply removing the target of the immune system attack is somewhat simplistic - as Graves is a multi organ chronic disease.

No two peoples journey with Graves is the same and why it is so poorly understood and badly treated - with the majority of sufferers encouraged to have RAI treatment - if remission isn't found within the first 15-18 month window of treatment with an AT drug despite current research detailing :-

QOL is worse 6 - 10 years after Radioactive Iodine therapy of Graves disease compared with antithyroid drugs or a thyroidectomy. ncbi.nlm.nih.gov/pubmed/306...

and with - pubmed.ncbi.nlm.nih.gov/338... suggesting the longer the AT drug is used, the lower the relapse rate in Grave's disease:

Treatment with the AT drug will ' buy you time ' while we wait for your immune system to calm back down again - and this all takes time and great skill on the part of the endo - as blood tests tend to run behind symptoms by a few weeks and if your Graves is raging Block and Replace maybe a more comfortable and better tolerated treatment option worth considering if offered, or even appropriate.

The most well rounded of all the research I have done is that of Elaine Moore's books and website - elaine-moore.com

[Gillypop in reply to pennyannie]

Thank you

[Gillypop in reply to pennyannie]

They are pushing me to have rai, but I don’t want it.

[pennyannie in reply to Gillypop]

Exactly - take copies of the research I've given as the basis of your concern and ask for endo's comments on same -

This research doesn't go into any details with regard to QOL - nor to the thyroid hormone replacement treatment options used - nor the monitoring and dosing of post RAI.

There is a known risk of cancer to breast and small bowel - you'll find more information if you go into Elaine's website.

If you have any eye issues, dry, gritty, burning, light sensitive, watering - any eyes issues can be exacerbated by RAI treatment.

If using eye drops to ease the discomfort - please ensure all are Preservative Free - even those prescribed.

[pennyannie in reply to pennyannie]

It is your body and you do not need to consent to a treatment you do not wish to have.

The other definitive treatment is a thyroidectomy - becoming primary hypothyroid and then being fully reliant on thyroid hormone replacement for the rest of your life -

or you can choose to stay on the AT drug - the devil you know - if and when you have another immune system flare up / malfunction - and the hospital will probably discharge you back to your primary provider who will monitor you.

[pennyannie in reply to pennyannie]

How have you been doing these past 15 years after your first phase of Graves ?

Do you have any idea what's upset your immune system this time around ?

Back to before Graves ever reared it's ugly head - did you consider your thyroid function normal and just curious to know if after AT drug treatment 15 years ago your normal thyroid function was fully restored ?

[Gillypop in reply to pennyannie]

I’ve struggled a bit for the last 15 years, I even had a brilliant gp that put me on t3 for 12 months but he left the practice and no one else would prescribe it. The only thing I can think of was I had covid in November 2022, in the January 2023 my 6 month blood check showed my levels were out of range, which over next 8 months went way out of range.

I haven’t felt well since 2007 when first diagnosed with Graves. Since then I’ve been diagnosed with lots of different things Eds, pots, mcas, fibromyalgia, gout, tinnitus, deafness, arthritis - it all just keeps getting piled on to me, no cures no help 😢 sick of it all x

[pennyannie in reply to Gillypop]

Did the T3 help ?

Sounds like you are now Graves/ hypo - since the first phase of Graves - and your thyroid function never recovered -

Graves isn't diagnosed until there are TRab antibodies over range and it can wax and wane throughout ones life under the radar.

I know now I have been hypothyroid since a child but never diagnosed as hypothyroid as my TSH never responded in the usual way or rose high enough to get a diagnosis though I had all the symptoms and just fobbed off with anti depressants :

I was verbally abused and physically threatened in 2004 by a man I employed as my assistant manager - went through company grievance procedure etc - insomnia for 3 months - saw a doctor - diagnosed Graves 2 days later.

So I think I know now my trigger, my stress, my anxiety :

You have a lot of health issues diagnosed and going on - this in itself is stressful especially if you feel you are not getting any answers that make any sense.

Try not to over think everything - and cut yourself some slack - I know it's not easy :

[Gillypop in reply to pennyannie]

Gosh you’ve had it bad, I’m sorry.

I think it’s been with me most of my life. My mum died suddenly when I was 8 years old, I was sent to a boarding school because back in the 70s that was what my dad thought was best, it was awful, I had 8 years of misery and hated my life. At 16 I was bitter and angry, I’ve never really let go of that feeling even though I’ve tried lots of treatments and therapy. I got a wonderful husband and 2 grown up children, but they honestly don’t understand any of this, they think, here we go again,mum’s ill again. X

[pennyannie in reply to Gillypop]

Well isn't that interesting - loss, shock, and at 8 years old - you were sent away to boarding school - golly - guess you internalised everything and had no one to confide, or trust in. I'm so sorry - and sending a big hug :

I could include my father, brother and mother all dying within 5 years of each other - but then I was a ' grown up ' in my early 50's and diagnosed Graves age 56 !!

The attack probably just the icing on my Graves cake that kick started my long awaited melt down.

Reading Elaine Moore writes - rough quote -

" there is likely a predisposition to Graves with a family member likely a generation away from you with a thyroid health issue -

and Graves can be triggered by a sudden shock to the system like a car accident or the unexpected death of a loved one. "

So you have probably been holding on to a lot of grief and loss for very many years - but not at a level to involve / distort your thyroid function enough - to get a diagnosis of Graves :

Very interesting that your doctor prescribe you T3 - at the right dose I'm sure this would have alleviated a lot of symptoms being suffered.

So let's leave this there for tonight - good talking with you - hope it's helped a bit :

[pennyannie in reply to pennyannie]

Just a thought :

If you felt well and more like yourself when on the T3 - can you look back and see where your Free T3 and Free T4 then sat within the ranges - as that;s where we need to try and get back to -

and guessing your TSH was low/suppressed as taking any form of thyroid hormone replacement containing T3 tends to suppress the TSH and that is ok :

[Gillypop in reply to pennyannie]

Yes it has thank you x

[Fruitandnutcase in reply to Gillypop]

I agree with pennieannie, I was treated with block and replace but I was told at the time that there are various ways of treating Graves and they (my hospital) used the fast treatment which was block and replace. It would take a year which I didn’t think was all that fast but it took exactly a year.

I had three months on 40mcg carbimazole alone and then Levo was introduced at increasing levels along with the carb until my bloods were where the doctors wanted them to be.

By the time I started levothyroxine after three months on 40mcg carb I was very hypo. My hair started to fall out all over the place - mainly on my husbands food which didn’t go down well - when I saw my endo and said my hair was falling out she laughed and said ‘Oh, ho, ho, your body has been on such a roller coaster from hyper to hypo, it will be all right when your thyroid gets back to normal’. She was right but that didn’t exactly cheer me up. Anyway, the treatment took exactly a year.

The exhaustion was really horrible at the beginning and I cut right back on my work, I worked free lance so I stopped altogether for a few months until everything kicked in and I felt better. Gradually as the levo was increased I felt better. I too was always being offered RAI should I relapse but I always said ‘No way’.

I don’t know how old you are or if you have a family to look after but if you possibly can rest and do as little as possible until you feel better. Just do what you want to do not what you feel you ought to do, you are really quite ill even if you don’t look it on the outside which was my problem.

As you know Graves really is exhausting, I also felt as if I was going off my head, I wasn’t fortunately and I did get back to normal. From what I remember I took 1000mg slow release vitamin C every day which I think helped a bit.

Just hang in there, it will get better.

[Gillypop in reply to Fruitandnutcase]

Thank you. I take lots of supplements vit c, vit d, selenium, zinc, magnesium, quercetin, I’m not even sure if that’s right, my endo laughed and said you don’t need any of that, waste of money

[mistydog in reply to Gillypop]

Most Endos seem to be diabetes specialists and know little about the thyroid. It's interesting if you ask them to explain how it works, that shows the level of knowledge.

[Gillypop in reply to mistydog]

To be honest my brain is so frazzled I’m not coping well with all the advice I’m being given on here. Such damn brain fog, I use to be so good understanding it all 😢

[mistydog in reply to Gillypop]

You need to have someone to advocate for you then.

[pennyannie in reply to Gillypop]

The mental, emotional and psychological toll Graves can have on any individual is never openly discussed in mainstream medical - which is more like a painting by numbers arrangement where being in the lines makes a perfect picture -

It seems very few seem to have any understanding of the relationship between the numbers nor on the overall outcome of the equation with the goal to help patients restore their health and well being.

Even when post RAI my eyes developed TED and became distorted with my not recognising my new face in the mirror I was told my distortion was not bad enough for NHS cosmetic surgery.

[Gillypop]

Thank you, I’m just exhausted, haven’t even got the energy to cry 😢

[Gillypop]

End of march. I’ve posted results above x

[Rapunzel]

Gillypop what a horror story. I know very little about OAT but just wanted to give you an internet hug 🤗 My quality of life was so eroded on levothyroxine that I felt like throwing in the towel. The worst part for me was a sense of loss of self, which is debilitating, mental health wise. You are with people who understand how you might feel, some sharing your condition. I have a friend whose mum had RAI and subsequently struggled to get the T3 she needed not to be permanently 'zombied out', as she put it.

In your mocassins, I too would baulk at RAI. pennyannie wrote I deeply regret RAI treatment and more ill since and treatment for primary hypothyroid dire. Treatment for all thyroid issues appears to be dire, so far as I can ascertain. Furthermore, I believe that a deeply held misogyny is at work to prevent us from regaining our equilibrium. Best to you in this never-ending struggle.

[Gillypop in reply to Rapunzel]

Thank you x