Thyroidectomy dose

[Gaben22]

Hello My question is to those who had undergone thyroid removal... Or near total thyroidectomy.. What is the dose that is proven to be effective for you? Also wondering what is your weight so it is possible to compare.. Thank you

[Greekchick]

Hi Gaben,

I hope you are recovering well from your partial thyroid surgery. If you click on my name you can see my history of TT. I know how hard a road it is.

In my opinion, I think your question is pretty difficult to answer. 80% of people do fine on doses anywhere from 88 mcg to 150 of levo alone and I have read of some people on this forum who take more. The weight guideline is usually used for a starting dose - and then it can take up to a year or longer to find your sweet spot so it is not really reliable. Most people on this forum are the 20% not able to manage traditional dosing and need either T3 added or use NDT that contains T3, T2and other ingredients. I am not yet at my right dose, but getting very close at a total of 112.5 (T4 and T3) together and it has taken almost 6 months to figure that out. I will need a little more T3 to get to where I need to be. I looked at your previous post and saw that you think you are overdosed. The only way to know that is if you look at your bloodwork and then consider your symptoms. There are others on the forum much better than I to help you interpret those.

You need to observe the ups and downs of your thyroid panel to know that as well. Since you have Hashis, that might also affect your dosing. Also, having some thyroid tissue left complicates things a little bit for dosing as well.

Discovering the dose that works for you is a matter of trial and error. There are no shortcuts and it is hard to use other people’s experience on their dosing to help you.

I would recommend keeping a diary of your doses and symptoms together with your blood work results to see how you are progressing. That has really helped me and my endo to get me on the right road. There are as many doses as people - so not a straightforward answer. I know that’s probably not what you wanted to hear, but I think it’s an honest one.

Wishing you all the best and sending good thoughts your way.

[Gaben22 in reply to Greekchick]

Thank you for your response I am happy to hear that you are doing well It is very hard to find the optimal treatment, because I have both the symptoms of underdosing and overdosing at the same time... There were time when I felt good-but it lasted for 3 weeks a year ago.. There are studies about 3D printed thyroid glands and I am hoping that it will resolve these thyroid miseries for some.. But its still years till availability, its in preclinical stage yet though.. I am gonna have a look at your story soon Have a good day

[MyDoctor1 in reply to Gaben22]

Ha! 3D printed glands!

[Greekchick in reply to MyDoctor1]

Yes, believe it or not! This was reported on recently.

[Greekchick]

Hi Gaben,

It is common to have symptoms of both hypo and hyper when trying to find the right dose. I had similar problems and still do, by the way - because I’m not quite at the right place yet. By the way, when you get your next thyroid panel, post your results here. There are some real experts at helping you sort them out on this forum.

Take heart - you will find your right place - it just takes time and it can be so demoralizing sometimes - I sometimes have wonderful days and then the next day will be awful - and all the old symptoms come back from being under treated. I have found that one reaches a plateau, and then you go down again until you find the next high point - and it goes like that until you get the right dosage. Just hang in there - it gets better. Sending a hug your way today and hope you feel better soon. 🤗

[Gaben22 in reply to Greekchick]

Thank you very much for the kind words

[pennyannie]

Hey there Gaben

If only it were that easy we wouldn't all be here looking at different options and learning what we can do to help ourselves by reading other peoples questions and answers.

As detailed in my previous post to you a fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3 and personally this is what I believe I am trying to replicate with thyroid hormone supplementation.

In order to achieve this I need my vitamins and minerals optimal as conversion of the inactive hormone T4 into the active T3 hormone that the body runs on, can be compromised if ferritin, folate, B12 and vitamin D are simply " in range " and considered "ok " by most doctors.

There isn't a quick fix, but a slow build, and guessing most people hit a bump or two in the road back to better health.

[Gaben22 in reply to pennyannie]

Thank you. I have appropriate levels of minerals and vitamins luckily.. I also take selenium for the conversion., vitD with k2 vitamin, some natural iron caps too.. The endocrinologist only look reference ranges sadly; not how I feel, true.. :/

[birkie]

Hi

I had a total thyroid removal in May this year my surgeon put me on 125mg to start with but I was still hyper(diagnosed with graves overactive) it sort of settled down a bit I had my six weeks test and my surgeon noticed my hyper symptoms and reduced my dose to 100 mg.. I'm due to see him this month again for my six week bloods but my hyper symptoms have returned along with kidney stones.. And I now have a high count of white blood cells in my urine.. I must say I'm now struggling I'm wondering if the levo is working for me as I'm not to good with synthetic medication.. I also cannot take hormone replacement,, (HRT) and was taken off the contraceptive pill as I developed a large clot in my right eye.. And I have noticed I have put some weight on eventho I've been vomiting and don't have much appetite either... 😢😢

[Gaben22 in reply to birkie]

It seems you have a rough time too

I hope it is getting better as time goes...

[birkie in reply to Gaben22]

Hi gaben22

Yes I feel I am ..but I did bring the the fact I'd be taking a synthetic medication(levo) up with my endo and my surgeon as I'm not good on synthetic meds they both reassured me it would be fine and I would feel much better in a few weeks..I could not take any anti thyroid meds as I was really ill on them and was constantly in hospital..I cannot take hormone replacement I have hyper symptoms and my last bloods said my FT4 was 31.5 and my TSH was suppressed...I feel really awfull and are still waiting to feel better after my TT...I also have a high count of white blood cells in my urine with no pain no infection...does anyone know if the pituitary gland can affect you? I'm also seeing an ENT as they have noticed my left ear drum is sucked in I've been a bit deaf in their for years I also have a dripping nose on the left side and a very watery eye on the left side I put these down to my thiyroid but the ENT specialist said the leakage could be CFS...cerebrospinal fluid..so waiting on that app to..😭😭😭

[Batty1]

I'm going on 3yrs without a thyroid and it's been a wild ride. My doses were never based on my weight but on my blasted TSH level which is always been below range even on just a T4 medication and because of my low TSH my meds have been reduced which leaves me gaining weight even though I really dont have much of appetite.

I've been on 88mcg to 125mcg at one point t3 was added and now I'm taking 2 grains Armour Thyroid And I'm ok not great.

[Gaben22 in reply to Batty1]

I was thinking about NDT too... It is hard to get by without thyroid... All the best to you!

[Tinkermt]

I had a partial a year ago in May and I just now have finally gotten my meds right. I am on NP Thyroid which has T3 and T4. I didn't do well on Levothyroxine because it only had the T4. I take 75mg and weigh 205. I am now starting to lose weight so maybe it will go down eventually because before I had been continually gaining weight when my levels were off. It takes time and I know that its something that will probably always fluctuate.

[Gaben22 in reply to Tinkermt]

I am happy to hear that you leveled out, I also my need some T3 too.. Doctors here think it is very unnecessary but I think they are wrong..

[Shellian]

Hi Gaben22

I had my thyroid and parathyroids removed about 11 years ago (medullary cancer due to MEN2a). I weigh about eight and a half stones and have always been on 100mg levo and 75mg one alpha ( to make calcium). This was fine for a number of years but gradually began to feel 'not quite right' having symptoms of both hyper and hypo.

I know last year my vitamin levels were not optimum and I have been trying to raise them by eating healthily. Still not right so just waiting for more blood test results. I feel that there's something missing - I know my brain and concentration has been affected since my op. I suspect I need T3 but , of course, not allowed that. May try to add some next but a bit scared of not being able to get hold of it after Brexit.

My TSh levels are always really low - less than 0.01 so endo is always threatening to lower my dose. They did this once and that's when I think I never got back to my sweet spot. I felt best when my T4 level was about 18. It's 14 now.

I never realised how finely tuned our bodies are and the massive impact my thyroidectomy would have on my life and relationships.

Good luck with getting your levels sorted out.

[Gaben22 in reply to Shellian]

Thank you very much Funny that is about the same number (18-20) where I felt the best and when my freeT3 was around 6 (pmol/l).. Wish you a good health!

[LAHs]

After my total thyroidectomy I was put on T3 only (Cytomel) and I felt great for about 3 months. After about three months my (stupid) Endo said, "You will be happy to know that we can stop that medication very soon and we will put you on the good stuff!" Well I felt just great on T3 alone and was too ignorant at that time to understand what she was talking about, so I just accepted it. The "good stuff" was Levothyroxine. I went down hill fast and struggled for three years to hit the right dose which made me feel well but kept my TSH at some acceptable level - a state which does not exist. After that I started studying and wised up, I am now on NDT. But sorry, I do not know the dose of T3 I was put on, but I felt great and could go back to work - until I got put on Levo.

[Gaben22 in reply to LAHs]

These comments like yours give me hope that some can feel good after the operation.. Doctors sometimes don't "care" about patients health, they go by the protocol.. Sad..

[Gaben22]

I had a blood test that has found out I have severe histamine intolerance so that could be the cause that I never felt well... My TSH is 0,750

FT4 is 15pmol/l and my FT3 is 4...

[Sophitje]

Hello Gaben, I had total thyroidectomy in March this year because of relapsed Graves disease that could no longer be treated with Carbimazole (developed Agranulocytosis from it ) and was initially put on 100 mcg Levo (back then I weighed 47 kg only when my normal weight should have been about 50kg). The operation went very well and I felt much (very much!) better than before so no regret having it. My first blood test's results (end of April) showed that I was over medicated so the dose was reduced to 75mcg. A month later another blood test showed that I was still very slightly over medicated. I am now on 75 mcg from Monday to Thursday and 50 mcg Friday to Sunday and within normal range according to the last blood test (mid July). I feel generally well although recently started feeling a bit more tired in the morning. I sleep well (a nice change after Graves) but find it more difficult to wake up and need to sleep early. It might just be a phase and I like my sleep! Weight wise, I am now 51 kg so gained back what I had lost during the Graves episode. I do feel that I am now prone to weight gain so I will need to be more careful with my diet. After my last test, the GP and the endo both said that I did not need a repeat test for a whole year unless I started feeling unwell. I found this a bit strange as I thought I would be tested regularly for a year following the op, especially seeing that I am on quite a low dose for someone who had a TT...

[Greekchick in reply to Sophitje]

Hi Sophitje,

I think one year is a long time for someone with Graves and TT to go without testing. If your doctors are unwilling to test you, I would recommend using Medichecks to do your own thyroid testing so you can see what levels you feel good at. You can also check for vitamins, etc, to help. Check the posts of SeasideSusie or SlowDragon to see what tests you need. Hoping you are doing well. You are entitled by law to have a copy of your test results and you should always have a copy. I had my TT 6 months ago for Graves FYI.

[Sophitje in reply to Greekchick]

Thank you Greekchick, that's very useful. Yes I was considering getting a private test in 2-3 months even if I still feel well, to check where I am at. I didn't know of Medichecks so thank you for the tip!