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Over medicated on levothyroxine

32 replies

Mezza80s · 06/10/2024 19:54

I've had hypothyroidism & hashimoto's for the last 18 years,its always been under control & I've felt fine up until about 3 months ago. I started feeling really anxious, shakey & like my body was vibrating, palpitations, couldn't concentrate, irrational thoughts, over thinking, muscle aches, massive weight loss, insomnia, loss of appetite, feeling of a lump in my throat I could go on.... So I went to the Dr's & they checked my thyroid & my T4 was high so they dropped my dose from 125mg to 100mg I went back 5 weeks later for a re test & it had gone even higher despite lowering my dose. The Dr told me to stick at 100mg & re test again in 4 weeks which is this Tues. My question is everything I'm feeling being caused by being over medicated? I literally feel like I'm going crazy!! My body won't stop shaking & vibrating, I'm not sleeping because I feel electrically charged 24/7 I feel low/depressed & my mind just races with so much information/thoughts I feel like I'm bouncing off the walls. The Dr's won't listen to me & just tell me it's anxiety. I've always had anxiety but this is something else! I've NEVER experienced this in my life & I've had anxiety since I was 8. Just want to know I'm not going insane because I'm literally at tipping point & feel like the Dr's think I'm making it up. Thanks in advance for any replies 🥰

OP posts:
Positivenancy · 06/10/2024 19:56

Have you had your blood pressure checked?

Mezza80s · 06/10/2024 19:57

No they haven't checked it at all.

OP posts:
Positivenancy · 06/10/2024 19:59

Go and get it checked. That’s exactly how I felt when I had my onset of high blood pressure. I am also on levothyroxine.

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Mezza80s · 06/10/2024 20:01

Oh really, ok thank you. Do you have to take anything for it or is it ok now?

OP posts:
Positivenancy · 06/10/2024 20:05

Mezza80s · 06/10/2024 20:01

Oh really, ok thank you. Do you have to take anything for it or is it ok now?

Yes, unfortunately, I take amlodopine and rampiril.

TeamPolin · 06/10/2024 20:11

I would be pushing for an endocrine referral at the hospital. If your dose has been cut and your levels are still going up, time to be seen by an expert....

Lavenderfields21 · 06/10/2024 20:36

Why on earth would they have advised stay on the dose when levels were going up? Seems obvious that it's over medication.

Mezza80s · 06/10/2024 20:42

This is what I can't make out. I could have cried when the Dr said stick with the same dose. It's not them having to feel this way. I was signed off work for 2 weeks because I couldn't function.

OP posts:
clair3s · 06/10/2024 21:13

I would push for an endocrine referral, I had Graves' disease and it sounds very similar. I had all those symptoms, I got beta blockers after taking myself to a&e as I really thought I was having a heart attack.
If the doctor isn't listening to you then request to see another doctor. Not sure how your doctor works but with your daily restrictive symptoms I'd try for an emergency appointment and ask for the endo referral to be made asap as it's affecting your mental health and day to day life and maybe a beta blocker for the palpitations and insomnia.
I'm sorry you're going through this as I've felt all those symptoms throughout my dodgy thyroid journey and I know it can be an awful experience.

ForestAtTheSea · 06/10/2024 23:07

@Mezza80s
L-Thyroxine stays in the body for a longer time, depending on the source it can be up to several weeks. You can also search articles on the half-time of l-thyroxine; one example is this:
https://www.drugs.com/medical-answers/long-levothyroxine-stay-system-3562485/
(but if you have been taking it for so many years, propbably you know that; I only wanted to add this just in case).

If you have been accidentally taking too much for some months now, there will be some excess yet to be used (as T4 is converted to T3 by the body, T4 is the storage version) and also your metabolism will be running at a higher rate and it takes a while to come down from that.

However, if you're still feeling wired, then you could try to drop down by another 25mg after the test (if you can hold out till tuesday, so the test shows the current situation accurately).

I second having your blood pressure measured as soon as possible (maybe at a pharmacy, or maybe someone within your acquaintances has a measuring device you could borrow for a day), because becoming hyperthyroid often goes along with raised blood pressure.

Another idea is, are you maybe taking unknowingly too much iodine - for example in salt with iodine, lots of fish, seaweed products.... That could have similar effects in Hashimoto patients. Have you started taking any dietary supplements or something like that? Maybe think of anything that was changed along with you noticing the effects.

Perhaps something has affected the availability of the medication - that you wait longer until you eat after taking it, so the same dose is absorbed better?

Mezza80s · 08/10/2024 16:28

Hi all, had my blood test today I've managed to hold out till now so I'll see what it comes back as. I did my BP & it was fine, 117/72 I've been taking 1000ug a day of vitamin D for over a year now as it was recommended by my Macmillan Nurse after having skin cancer and nit being able to be in the sun as much as I should to get the right amount of vitamin D. That's the only thing I've changed & my vitamin D isn't particularly high, other than that the only other thing I took which was literally for about 4-5 days because I started feeling odd was evening primrose oil tablets as advised by my Dr as I had breast pain. I don't have too much iodine either so it's all really odd.

OP posts:
NewVillageShop · 08/10/2024 17:13

Hello @Mezza80s .

I'm not sure how old you are but with me it was due to the drop in oestrogen as I approached the perimenopause / menopause.

It happened to me in my 40's exactly as you describe. I had been taking thyroxine for underactive thyroid since my early thirties, and was stable for many years on 150mcg, which was later increased to 200mcg a day.

I eventually went to the doctor with the symptoms you describe which had crept up on me very gradually. It was initially diagnosed as a manic episode of bi-polar and I was put on lithium.

That did not ring true to me at all and I felt so odd on lithium that I came of it after only a few days. I did a lot of reading and realised that my symptoms were exactly as if I were hyperthyroid, or taking too much replacement thyroxine.

I immediately stopped all thyroxine and went straight for a TSH blood test. As I had suspected the results showed I was on too high a dose of thyroxine, and I went back to the GP and told him I was sure I wasn't bi-polar, that I had stopped the lithium and thyroxine and was already feeling much calmer and more normal.

As by then I'd had a few days without any thyroxine, we agreed that it would be best to re-start the thyroxine slowly which I did, for a few days at 25 then 50 then 100, eventually settling at 125mcg / day

After that I had a few more years at 125, then gradually noticed that was too much and it was very gradually titrated down (100 one day, 125 the next until it was 100 6 days a week and 125 just once a week.

I am now nearly 70 and for the moment feel well on 100mcg / day.

I'm not sure how many GPs are aware that as your oestrogen levels drop, so does your requirement for replacement thyroxine.

DryBiscuit · 08/10/2024 17:17

Im on 200mg of levothyroxine

and have never felt the same as you

I would push for a urgent referral

NewVillageShop · 08/10/2024 17:28

In short, the answer to your question below, @Mezza80s - is yes, your symptoms could well be purely due to being over-medicated.

I am not a doctor but in your shoes I stopped all thyroxine for a few days and soon started to feel better.

"My question is everything I'm feeling being caused by being over medicated? I literally feel like I'm going crazy!! My body won't stop shaking & vibrating, I'm not sleeping because I feel electrically charged 24/7 I feel low/depressed & my mind just races with so much information/thoughts I feel like I'm bouncing off the walls. The Dr's won't listen to me & just tell me it's anxiety."

DryBiscuit · 08/10/2024 17:29

I do not think stopping without DOCTORS advice is sensible

Andwhatfreshhellisthis · 08/10/2024 17:33

TeamPolin · 06/10/2024 20:11

I would be pushing for an endocrine referral at the hospital. If your dose has been cut and your levels are still going up, time to be seen by an expert....

This and in the meanwhile push for a full blood test and iron and vitamin D levels. Do your own blood pressure.

NewVillageShop · 08/10/2024 17:36

@DryBiscuit If it's not due to being over-medicated, a trial without any thyroxine just for a few days and re-introducing it gradually won't do any long term harm but could reveal the reason for how the OP is feeling.

If I hadn't trusted my gut instinct about being over-medicated, and just accepted the ridiculous diagnosis of bi-polar, who knows where I could have ended up.

MujeresLibres · 08/10/2024 17:43

I am in the same situation and have just cut my dose from 125mg daily of thyroxine to 100mg. I don't have your symptoms though, the only thing I noticed was my pulse thumping more than usual, but that's gone now. Sounds like it might be something else as well as the thyroxine. I wondered about Graves too like a previous poster?

FortunataTagnips · 08/10/2024 17:57

How old are you? I had exactly those symptoms before starting HRT. I’m not 100% back to normal yet, but a lot better and the oestrogel gel stopped the weird “my whole body is vibrating” sensation quickly.

NewVillageShop · 08/10/2024 18:03

FortunataTagnips · 08/10/2024 17:57

How old are you? I had exactly those symptoms before starting HRT. I’m not 100% back to normal yet, but a lot better and the oestrogel gel stopped the weird “my whole body is vibrating” sensation quickly.

That ties in with my experience of needing less thyroxine as my oestrogen levels declined.

Add in oestrogen in HRT and you'd have to up the dose of thyroxine again.

Mezza80s · 08/10/2024 19:22

FortunataTagnips · 08/10/2024 17:57

How old are you? I had exactly those symptoms before starting HRT. I’m not 100% back to normal yet, but a lot better and the oestrogel gel stopped the weird “my whole body is vibrating” sensation quickly.

I'm 40 in Dec

OP posts:
Mezza80s · 08/10/2024 19:23

Andwhatfreshhellisthis · 08/10/2024 17:33

This and in the meanwhile push for a full blood test and iron and vitamin D levels. Do your own blood pressure.

I've had everything checked & it's all ok other than my thyroid.

OP posts:
Mezza80s · 08/10/2024 19:24

Positivenancy · 06/10/2024 19:56

Have you had your blood pressure checked?

Yes yesterday, it was 117/72 so it's fine.

OP posts:
GotoutoftheUKphew · 08/10/2024 19:30

Hello. I have had something similar a couple
of times before and I think it is to do with the Hashimotos.

The way my dr explained it to me is that the thyroid is unstable so now and again it speeds up massively and another part of it dies off.

This is why Hashimotos sufferers are given levothyroxine, it keeps the thyroid stable.

In my case, it was temporary- one time lasted about a month max and the other time maybe two months.

ForestAtTheSea · 08/10/2024 20:28

Good to hear your blood pressure is ok!

IIRC, there is some relationship between Vitamin D and thyroid hormones, in that Vit D helps the thyroid work better. Possibly it has improved the availability of your medication in your body. But soon you'll have your test results and can discuss it with your doctor, depending on what the result is.

chriskresser.com/the-role-of-vitamin-d-deficiency-in-thyroid-disorders/

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