Levo dosage after total thyroidectomy

[Tamzin27]

Hi guys,

It's been a while since I've been here. My question is more for my own curiosity. I was wondering how much Levothyroxine you are taking daily after your total thyroidectomy. I've been thyroidless since October 2016 (nearly 6 months) and I can't seem to get my Levothyroxine dosage right. My GP has been very good and has allowed me to play with the dosage, so from 125mcg to 150mcg and alternate days etc. I still don't feel 100% though. I'm deficient in Vit D, calcium and Ferritin is on the low side.

I've put on weight, can't shift. My nails are brittle and have ridges on them and my hair is now thinner. I did put my last blood results on my last entry here and having another blood test done on Friday.

So, I'm curious to hear how much Levo you are taking and how do you feel? Also what is your routine with blood tests? How often do you have them?

Thank you

[Panda_26]

I was on anywhere between 100 - 150 thyroxine in the first 10 years after thyroidectomy. After that it became increasingly difficult to get my dose right and with so many other side effects I decided to switch to NDT. I know take 2 grains and my health is so much better. Whatever you choose though you must correct those deficiency's as they're a vital starting point. Good luck !

[Tamzin27 in reply to Panda_26]

Thanks AmandaQ. I'm having my bloods done tomorrow and hopefully will get a better picture.

[Hidden]

After TT in 2005 I had troubles like you are describing. Tried more, tried less and it always ended up with me feeling rotten. 150mg seemed to be about right but never felt well on it for 8 years.

Lost all faith I had in doctors ever getting me well, so started on NDT/Thyroid-s. It hasn't cured all of my problems but it's a darned sight better than levo.

Unable to give any info re other deficiencies but I suspect that these could very well correct themselves when taking NDT.

[Tamzin27 in reply to Hidden]

Hi Panda321. Thanks for this. Does your GP prescribe your NDT? Are you in the UK? I've been begging for T3 from my GP and Endo, and they won't budge. I'm too scared of buying any tablets online.

[Hidden]

In UK, assume you are in UK as well, my CCG together with 7 others are given their instructions from the Area Prescribing Committee. See how ridiculous these instructions are for yourself - panmerseyapc.nhs.uk/recomme...

My doctor is obliged to obey these stupid rules although I am aware he would like to issue me with NHS prescription for NDT purely in order to stop me pestering him incessantly.

The APC had a meeting on 29th March when they discussed my objection to not getting the medicine I need to keep me alive AND give me good health. I await notification of their decision and will continue my fight whatever the result may be. I do not hold out much hope but cannot imagine what their argument will be that they will still not give me NDT.

I have been offered NDT on private prescription and T3/T4 in same proportion as in Armour NDT but have refused both offers. Why should I have to pay (10x what the Thai NDT costs me) or get something I know will not work for me?

I have always got excellent service for anything I have bought from Thailand or other places around there. There's nothing to fear about buying this particular product, maybe there is with other health products, but not NDT.

Hope others on forum can give you some advice on what you could take to possibly cure any deficiencies you may have other than thyroid hormones. But your best bet to me seems to be to get some NDT and give it a go. It certainly won't do you any harm.

Curiously, I failed to lose any gained weight whilst on Thyroid-S but have lost a stone since Christmas on Thiroyd despite me thinking that Thyroid-S managed to give me more energy than Thiroyd.

[Tamzin27]

Thanks for this lengthy explanation Panda321. It's all about money and business. Having my bloods done in the morning, so should get a better idea by Tuesday. I really need to start taking mattersin my own hands. Take care.

[WobblyX]

Hi Tamzin27 I had my TT mid September 2016 and have been on 100mcg levo for about 4 months, originally 125 mcg after op. I'm only now returning to good energy levels ( and my hair & nails still rubbish) still having 3 monthly reviews with endo. I hope I'm converting better now, previously not great, but combined with about 6 weeks into being gluten free and supplements of vit D & K, B12, Selenium, zinc and magnesium so hoping its all settling down......

[Tamzin27 in reply to WobblyX]

Hi WobblyX. So pleased to hear that you are feeling better and I just had a look at your profile page. Your blood results are so different to mine and your T4 is in the higher range. Shows you how we all need individual treatment. I've just added a new post (please read on my profile page), so I don't need to repeat myself. I've was prescribed 125mcg Levothyroxine but have been taking 150mcg (without my GP knowing, yes very naughty). Told her yesterday and she told me she's very unhappy with me and scared me by saying I could have an angina. Now, I don't know what to do. She advised me to speak to my Endo at the hospital. I feel so much better than before surgery, but have put on a lot of weight and deficient in calcium, Vit D and everything else is on the low side. I have no willpower to go gluten free at the moment but guess I'll have to do something about it. Your post has now made me think too about Levo. Am I really taking too much Levo? You are reducing yours and I'm increasing mine.

[WobblyX]

We are indeed individuals! I saw your post and yes your T4 is much lower than mine, so surely you won't be converting much....interestingly our T3 is closer😂 I started on 125 initially and then down to 100 after six weeks. Last two blood tests endo has been keen to decrease levo further and I have resisted. She says I'm quite small build, well I may be 5'2" but my BMI sits right on the crest between healthy and overweight and I very easily dip into overweight most of my life😬. Don't test T3 here so the reasoning to decrease is to increase ( suppressed) TSH. brought private test results in last time and showed low T3 so....staying on 100 mcg, having glucose and cortisol tested in case they are adversely affecting conversion....and review another 3/12. I think having a bit more time on the stable dose has helped me and everything is functioning better. I know what you mean about adjusting diet, gluten free was easy for me as my husband has been for some time and I'm used to it and didn't eat a lot of bread anyway. I found with it and supplements I had to introduce them gradually and individually so I could identify any reactions. It's one step at a time ......keep on stepping,