I stopped taking thyroid medication 3 days ago

[Jenny583]

Hi all, me again,

So I had choking, rhinitis, coughing, high BP, tachycardia, tinnitus, GERD & horrific back & chest pain on Levothyroxine. Also dementia. I started splitting the dose to see if reaction with each dose., It did, so after my last post I sought to relieve the BP & HR by trial & error, i.e. stop taking the pills, clear out the reverse T3 & see what happens. What was left of my hair fell out last year, & I was stuck in bed all spring, summer & winter, with total cant-be-arsed-itis, whatever the technical term.

The surgery have not responded to my saturday email, so not sure if I should order any more paracetamol, as they don't work very well anyway, + in order to hold them down I have to eat baking powder. Could that be acidosis I wonder. Don't know how I would pick them up anyway.

If the GP phones, he will charge me & tell me to go round. My BP & HR would be high from the pain of not being in bed, I would have to take all 8 paracetamols & hope I could hold them down, I would have to pay again with possibly no resolution to these problems, & then probably develop full blown allergy to Dr's. In short, I don't know how I will react to any more merry go rounds.

Email from service provider suggests I have to pay a lot more to keep using my own phone,(already £60 pm)- which I hardly use anyway, I'm too brain fogged to even understand what I'm getting into, so how can I deal with Dr's. If I can't get a blood test to see if the out of range viscosity, RBC, liver enzymes, cholesterol, TSH, et al that GP did in May & clearly didn't look at are significant to the high reverse T3 & other problems, then if I do crash & take T3 to survive another day, the T3 will be blamed, & anyway I will run out soon.

So should I put a call through to reception & issue an ultimatum, reminding them that I was supposed to be checked over by endo clinic for the back pain, or do I just struggle round for a repeat prescription of paracetamol? I live in Jersey so the protocols are different here.

How can I convince them that I can't take Levothyroxine? Is this possibly an allergy to T4, or is it possibly non thyroidal illness reaction?

I feel dreadful, & need to get up & cook a stew, I haven't cooked in ages. My head feels really weird, & only consolation is that BP & HR don't rise above dangerous levels now. The heart is not adrenergic, as I took 30mcg propranolol on Saturday night, & instead of pounding heart settling & getting to sleep, I was awake all night. I am losing ability to think or type, so Id better stop now.

Sorry for the ramble, & thanks, Jenny

[Jaydee1507 Administrator]

I'm too brain fogged to even understand what I'm getting into...

I do seriously wonder if this might be the case with stopping Levo. Did you ever try a different brand of Levo? Aristo is 100mcgs only Levo but lactose free. Theres also liquid Levo with less excipients but expensive.

Its not an alergy, more likely an intolerance to fillers which iis why you should try different brands.

Endo's don't usually treat back pain in my experience. Best get to physio?

Reverse T3 isn't such a thing these days as there are multiple causes of it being raised, many of which are not thyroid related.

You may have not been great on Levo but stopping it is not the answer in my experience. I ended up extremely ill for a long time and struggled to restart it again even. Suggest getting a different brand for now.

[Jenny583 in reply to Jaydee1507]

Thanks for your input Jaydee1507, I live in Jersey channel islands, so we don't have options here like in other countries. The GP won't consider any other option other than Endo, even though I asked him to. I have had all brands of Levo available here, & all made me worse than when I was under range. I was diagnosed with central hypo.

I would rather be without anything than go back to Levo, for whatever the cause of the worsening symptoms, I do not believe that I convert on a cellular level. Trying to be patient.

I hope you found the answer to your own problems Jaydee. x

[Beau55]

Hi Jenny, sorry to hear you are feeling so rubbish. What dose of Levo were you taking? have you ever had your adrenals/cortisol tested via a saliva test? It sounds like by starting the thyroid meds you have unveiled an issue with your cortisol which could be making you feel worse on the meds. Without enough/too much cortisol the Levo can’t work and can make you feel absolutely awful. I had this same experience when starting on armour without taking adrenal cortex first.

[Jenny583]

Hi Beau55, I started Levo in February 2022, previously tried T3, then metavive bovine, then Metavive + T3 then T3 then NDT! finally the Jury call up service insisted that I prove that I was bedridden, so an unknown GP had to test everything. He decided that the NDT was the culprit & allowed me to swap to Levo, I got off Jury service, GP increased to 125 over the months, but I felt worse on Levo than all other options.The higher I went, along with weight gain, the more sluggish & bedridden I got, Hair fell out, almost none left now, BP went sky high, zigzag blind spots, then my back went along with lungs.

Some things came into range on T4, like GFR, but other things got worse, but I only ever felt benefit on self sourced T3, but Endo made me stop it. Now back full circle. My Cortisol ranges from 138 to over 400 on 9am tests, last reading in December was 315.

I am not able to obtain adrenal cortex? but anyway it is not really established if I am hypothyroid, as I was severe graves thyrotoxicosis, & records 'disappeared', + I have/had low non bioactive TSH. So I have to pit what little wits I have left with a greedy dishonest medical system, where GP's insist on more £ from government, even though we patients directly pay them £55 without blood tests, GP's have no means of curing, + almost no specialists to refer to, who only stay for 6 months, & hospital fell down, & they can't find a site for a new one. I do my own physio, consists of writhing in pain in between trips to the nearest toilet which is a 3 day camel ride away as the toilet next to the bedroom I live in has not worked for a long time, so that is my physio & exercise😁

[arTistapple]

Just thinking when I read your story. It’s an extreme form of the help we are NOT getting from our medical helpers. You need an on the ground ‘real’ not ‘virtual’, advocate. Many of us do not seem to be able to ‘get through’ to our medics on our own. I know I struggle and yet I am not in such a bad way as yourself. You sound like you are on your own. Is this the case? Do you have anyone who might be able to help? Feels like you need actual human contact, from your post. TUK were talking about phone line support at one time. I have no idea if this was set up. It would be an onerous task for anyone but one of the best survivors I think.

[Jenny583 in reply to arTistapple]

Real helpers are not an option here. We are in the same boat. A friend picked me up & took me through town twice last year. Each time I was in too much pain to buy anything. So human contact is not an option, & any contact with humans results in too many paracetamols in short time, with resultant bad stomach.+ it's not fair on friends.

I don't think there is a phone line? pretty sure I checked that 1 out last year, but anyway it is for patients in the UK. x

[tattybogle]

since your back pain has been an issue since long before you started taking Levo, ( it was a problem you mentioned 5/6 yr ago in your first few posts , re, osteoporosis diagnosis) i don't think you should assume it it the levo causing / worsening it.

Sounds to me like you need some decent painkillers to control that issue , and perhaps this pain is something you need to discuss with GP in an appointment unrelated to thyroid hormone discussions .

Taking regular paracetemol will help a bit , but it sounds like you need to have a conversation about this pain and sort out some more appropriate kind of pain relief since it's an ongoing problem that is not related to levo .

Also rhinitis is an issue you mentioned back then too.

So stopping all levo is not likely to have any impact on these issues .

Adding a bit of T3 to levo doesn't seem to have helped.

if you do come off levo do you now have a reliable source of either NDT or T3 ?

My biggest concern is that if you ditch this levo prescription, you may not get it back ever , as you had a heck of a job finding anyone to officially prescribe thyroid hormone replacement of any kind for you, as the are not convinced you need it.

Before that you were really struggling to source a regular supply of either NDT or T3 .... and you had similar problems with your health when you were on both of those options too ,so it is not at all certain that going back to them will give you any better results than it did before.

Are you now hoping to get someone to prescribe T3 or NDT ?.. or are you expecting to be able to source your own ? is this realistic, since it was such a problem before ?

or are you considering taking no thyroid hormone replacement at all ?

if you do decide to not take anything at all , how will that affect you ?

Stopping Levo all of a sudden (without any NDT / T3) is likely to make you feel very unwell ( hypo ) mentally and physically , for at least several weeks and probably a lot longer while the body tries to get your thyroid to make some T4 /T3 again .. which will take ages as it needs time for you to become hypo enough , for long enough for the TSH to rise .. so you need to be prepared for things to get worse for the next few months if you just stop levo and are unable to replace it with any NDT or T3.

( and that assumes you TSH will rise .. which is far from certain in your case)

[Jenny583]

I was able to keep on top of the spine wedging before Levo via some weight bearing exercise, at least basic housework, & chopping down & up trees etc. Anytime the back started hurting I could go for a walk or something similar, & the pain would resolve.I have had several conversations with Dr's about the pain in past months. GP should have referred me by now as he promised in January,I been to pained to speak up til now.

But now, despite the need to move, just going to kitchen to put an egg in a saucepan leaves me in such pain that I can barely hold the egg down. The body has likely got used to the paracetamol now, but also the back may be broken.

The total lack of motivation & a kind of weird depression over 2022 is maybe how my bones & ribs got so weak, as the sluggishness meant I didn't want to get out of bed. Lack of T3 to the brain maybe? My skin felt cold, I felt cold, my brain ceased to function at all. So I developed some kind of cough, asthma, & I was coughing froth if I stood up. Also breathlessness, & dementia.

At 1st It felt like my ribs had been broken on the left, then the spine, & now it has started on the right as well, but as I refused the only drug offered here namely alendronic acid, I am on my own there.

Realistically, there is no chance of obtaining T3 from Dr's here, I had considered T3 for brain & motivation function, but the only international supplier that I can see is £280 PM+ tax, I may make things worse, & lose the TSH permanently, also be abandoned by medics. I have read that the longer 1 is on levo the less chance of a return to pituitary function/tsh.

Right now I am waiting for some lessening of pain, enough to have a conversation with surgery. The tachycardia is back, as I threw some meat & veg in a pressure cooker last night, & boiled 2 eggs this morning. But if going beyond opening a tin of sardines causes that much pain, I will have to find a way of getting stronger pain killers to me. Many symptoms started to resolve after I stopped Levo, but others took their place. I feel very ill, & weak.

The only thing I can think of to see whats going on with the thyroid system now, is to order a finger prick test from 1 of the UK labs, but what tests should I get? There may be a very small chance GP sitting up 👀 that way. I have nothing left to lose now. The Endo I saw in December pointed out that my TSH rose from the dead in the space of 5 days a few years ago, (I pointed out that I was not on any T4 just low dose T3) - the fact that it's not bioactive does not register with medics as you know. But the main reason I stopped the Levo is because I had symptoms of high reverse T3 on a normal dose, & it rather looks like that may be caused by acute or chronic illness, So I let the metabolism decide it's own appropriate level for now, as I don't want to delay healing.

But I am losing patience with these overpriced 'Dr's' & feel like a cash cow, I am much poorer than an OAP, so cannot afford the same old run around year after year. My Mother was unable to take drugs too, in fact it was drugs that killed her in the end.

"or are you considering taking no thyroid hormone replacement at all ?

if you do decide to not take anything at all , how will that affect you ?"

I felt worse on Levo than any other drug, + T4 suppresses my TSH, Yes in the short term I will, in some ways feel worse & do now, It may be that I will have to take low dose metavive, & try & find supply of low dose T3, to add to that. It would be cheaper than do nothing GP's too. But for now I am considering how I can get pain relief, & waiting for bank statement with view to fingerprick. I will let you know how I get on. x

[tattybogle in reply to Jenny583]

can you clarify what you mean when you say your TSH is not 'bioactive' ... i suspect you may be using the term incorrectly and if so , i'm not surprised the endo doesn't seem to take it onboard.

as you've stopped levo recently there's no point ordering any thyroid blood tests at the moment , you need at least 6 weeks on a stable dose ( or off it ) for thyroid blood tests to be at all meaningful .

Reverse T3 doesn't cause any symptoms . Why are you thinking you may have high reverse T3 ?