Thyroid

[Tiger45_]

Hi. Hope you all well. Does anyone have experience coming off levothyroxin 50mg? I had my left thyroid removed 10 years ago. My right thyroid producing too much thyroxine and making me very ill. Many thanks.

[Buddy195 Administrator]

Welcome to the forum Tiger45_

So we can offer better advice, can you tell us more about your thyroid condition, eg when you were diagnosed, ongoing symptoms, plus blood test results (with ranges in brackets) for:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

[Tiger45_ in reply to Buddy195]

Hi Buddy. Thanks for replying. 2014 I had my left thyroid removed due to large goiter and abnormal cells. Was on 50mg for 10 years. No issues. In January 2024 my blood results were 15.6 and 0.46. I was feeling OK this month. Last few weeks I started to feel wiry low mood anxiety heart palpitations. Couldn't settle. Had another blood test in March 2024 18.9 and 0.28. Gp put me down to 25mg levothyroxin. Started trembling fast heart rate and taken to hospital with hypothyroidism. Hospital kept me on 25mg and gave me propananol for the heart palpitations nausea and anxiety. Few days after no appetite not sleeping anxiety tearful low mood. Gp has taken me off levothyroxin starting today and took me off propananol as im astmatic. Gp said i shouldn't of been given propananol due to being asmatic. I'm off work ill with the symptoms confined to my sofa. My right thyroid is enlarged and I have been urgently referred to ENT and Endo suspected cancer. Worried ill be worse coming off levothyroxin. Obviously something wrong with my right thyroid. Thanks

[Tiger45_ in reply to Buddy195]

My vit d was low but not too low. Take supplements for this. At the hospital my thyroid bloods were 16.9. So they have come down.

[Buddy195 Administrator]

Can you please state which tests you have had (TSH, FT3, FT4) and add the ranges (in brackets after results)? These can vary between laboratories so we need to see them to understand your results.

[Tiger45_ in reply to Buddy195]

Hi. 19th January 2024. Thyroid bloods on 50mg were plasma free T4 level (15.6) Plasma TSH level (0.46) classed as normal. 19th March on 50mg Thyroid bloods were plasma free T4 level (18.9) Plasma TSH level (0.28) classed as too high. Levothyroxin was reduced to 25mg last Wednesday the 3rd April 2024.

Went into hypothyroidism Sent to emergency hospital and the bloods were on the 8th April TSH 0.30 (0.28) FT4 16.5 (18.9)FT3 5.3.

Now I'm one day into not having any Levothyroxin.

Many thanks.

[Buddy195 Administrator in reply to Tiger45_]

Please supply the ranges (not just the results) for the tests as these vary between laboratories.

TSH 0.30(0.28)

FT4 16.5 (18.9)

FT3 5.3.

I’m unsure why your Levothyroxine has been reduced. Perhaps your GP was acting on a TSH result alone and did not take into account that FT3 and FT4 appear to be within range. Please supply lab ranges for each test.

As I’m confused by your lab ranges in your reply, I will ask SlowDragon to advise.

[Tiger45_ in reply to Buddy195]

Hi. Thanks for replying. 19th Jan. T4 7 70- 15.10 jupmolL. Tsh level 0.34 5-60 mu/l

The above is the lab ranges.

Thanks

[Cuddlebun]

yep I was so sick of feeling crap I was on 100 mcg had been fir 20 plus years. They keep changing ingredients and suppliers and to be honest I had had enough a friend who had come off them three years ago has thrived and takes kelp which is her story . As a nurse I would never advise what I did three months ago I stopped them altogether after three day I felt fabulous x I am taking heavy vit and mineral tablet and my head is clear my stomach and bowels are working great and eating healthily x. I saw my GP because changed my surgery he’d done a blood test and when I sat with him we spoke re how I felt he looked at me and said he apologies for the profession as I had no reason to go on them all those years ago xxx I was depressed and stressed as I was a community nurse with family probs. He’s taken me off all tabs and will monitor me over the nx year xxx always go to GP first I was naughty with little knowledge

[Tiger45_ in reply to Cuddlebun]

Hi. Thanks for your reply. Why were you on levothyroxin? Had my left thyroid out 10 years ago. Took 50mg levothyroxin for 10 years with no issues. Recently my right thyroid has enlarged with suspected cancer. My gp put me down to 25mg recently due to my thyroid producing too much thyroxine. I went into hypothyroidism on Monday and ended up in hospital. Hospital kept me on 25mg and gave me propananol. I'm suffering from anxiety trembling shaking low mood. Not eating or sleeping. Gp took me off levothyroxin yesterday. I'm confined to the sofa. Gp said if I don't cope he will block my thyroid. I'm waiting to see endocrinologist and Ent on 27th April. I'm sorry to hear your story. And really good to hear you are better. I think I'm going to go through hell coming off levothyroxin. Very worrying. X

[Cuddlebun]

I think I stated I was stressed tired and my life seemed a mess I was crying and had no energy I started on 50mcg and just went with whatever the GP told me xxx I think they are messing with the mix these days re cost and changing and Mixing manufacturers which effects all patients with no support from most Doctor x my

Friend had thyroid surgery but not me xxx we all need to report on the yellow card system folk are struggling xxx I have been appalled of the suffering on here xx bless you all

[Tiger45_ in reply to Cuddlebun]

Hi. Jeez very scary. Didn't the GP do your thyroid bloods 1st? That's appalling to hear you were on Levothyroxin when you shouldn't of been. Plus GP should check thyroid bloods every year if stable and every few weeks if not. Thanks for your reply. X

[Cuddlebun]

they did but instead of looking at the full picture they just put you on a med x but just glad I feel well now but I am a person who stands my ground I have worked in the NHS for over 42years Doctors get paid well and we deserve investment and my patients had me to fight for them as medics always should xx it’s not about the medic xxx anyway find a good GP if you can 👍🏼🙋‍♀️

[Tiger45_ in reply to Cuddlebun]

Thanks. We put our lives in these medical pepples hands. I just hope my Gp has got it right. Take care. Glad you're well. X