Devastated

[Sasah]

I feel so stupid. I gave away 1/2 my thyroid. I had a tiny nodule. I am even sure advice is to wait. My surgeon was blase, us3d the C word, cancer! Freaked me out. I had an hemi. Was told i would be fine. Was treated like extracting a tooth. No literature or guidance on the afteermath. Also, given no after care and told i am good to go as just 'in range' TSH!. I am so mad with myself. I gave away my body. Plau Russian roulette and lost. I can't stop beating myself up that now feel poorly and broken. Why did i rush into it. Why didn't i seek a second opion. A tiny nodule as cost me my well being. I am absolutely devastated. I can't see the light. My hair is falling out, gaining weight and no meds as yet.

[SlowDragon Administrator]

Because you have hair loss

Ask GP to test full iron panel including ferritin

Test early morning. Don’t eat iron rich dinner night before test

Also request vitamin D, folate and B12 tested

Essential to maintain GOOD vitamin levels

This helps remaining half thyroid work better

Or if it can’t work hard enough…..good vitamin levels improves your chances of increase in TSH so you can get started on levothyroxine

[jgelliss]

I'm so very sorry you had to go through it. There are wonderful and very helpful members that will share their experiences and maybe it can help you like they helped me . I too had TT and was told take the pill and I will be just fine. What I learned from the great members was that Iron,Ferritin, vitamin D, B-12/folate are very important components that help us feel better and work with our thyroid meds. Are you on Levothyroxine only ? Many do very well once they are on their Optimal dose. I needed some Lithoryanine aka T3. And that works well for me.Wishing you Wellbeing very soon.

[Kerry124]

try not to blame yourself your doctor is the one who advised you to do this. Just mentioning cancer can panic you and I know this because I had breast cancer which was treated and I am well now

Your hair loss could be caused by your thyroid and I have had hair loss when my levels were off. Have you had you TSH or T4 tested recently? You might need to take thyroxine because your remaining thyroid might not be able to supply the thyroxine you need

[Blondiejayjay]

So sorry to hear you feel so low. Along with all the other positive comments and optimising vitamins other things that affect hair loss is the surgery itself. The trauma of any surgery can cause temporary hair loss. Be kind to yourself and I hope you start to feel improvements soon

[Sasah in reply to Blondiejayjay]

Thank you. I will try. X

[Smithfishe]

Hi Sarah. Having had to have part of your body removed is a shock and scary. I know because I too had half my thyroid removed ten years ago. What I would say to you is that you you are definitely not stupid for making the decision to protect your body and your life. The fact your doctor mentioned cancer and or the risk of cancer and thought it important enough to want to operate shows how critical your decision was.

It's my observation that often doctors and nurses tend to take a light hearted attitude to down play the severity of a situation in an effort to calm a patient which could be what you experienced.

The good news is that half a thyroid is better than losing your whole thyroid. It can function perfectly well producing

TSH. Which means not having to rely on of take synthetic thyroid pills.

Be proud of taking preventative action to protect your body because the alternative (cancer) would have been much worse.

[Sasah in reply to Smithfishe]

Thank you for your kind words. I reallyy needed to hear this! So greatly appreciate your time.

[pennyannie]

Hello Sasah and welcome to the forum :

What's done is done - let's stop looking back and let's look forward.

You likely now need T4 - Levothyroxine - thyroid hormone replacement and experiencing the insidious symptoms of hypothyroidism creeping in, colouring and questioning your being -

So you need to get checked out as to how well your remaining part thyroid is able to keep up -

and ideally we need to know your TSH, Free T3 and Free T4 results and ranges -

pre and post surgery - and if well before surgery - these are the blood test results we need to now try and get back to.

Also very important that ferritin, folate, B12 and vitamin D are up and maintained at optimal levels, which we can advise on - as just in range levels can compound your health issues further than necessary.

Just being in a NHS range somewhere, is not conducive to good health - and we need to be aiming for optimal levels throughout all blood test results which we can advise on once we have some details.

[Sasah in reply to pennyannie]

Thank you. I think i have a set of blood from pre op. Which i luckily requested or i wouldn't have that base. They wont to T3 but i will request an up to dat TSH &T4.

[pennyannie in reply to Sasah]

Ok then - look forward to seeing whatever you have there -

However it is the level of your T3 that causes all the symptoms you maybe tolerating

and the relationship between your Free T3 and Free T4 that gives you back your wellness and your ' you ' :

It is not just about being ' normal ' and being in the range - somewhere, anywhere as hypothyroidism is found in the low ends of both the Free T3 and Free T4 ranges -

and ideally you need both thyroid hormones well up at least around 50% through the ranges with the T3 tucked in just behind the T4 result in % terms.

It is all about fine tuning your T3 and T4 for you to be symptom free, metabolising and living your best life.

Try and get the co-factors of ferritin, folate, B12 and vitamin D run at the same time-

I know likely as step too far - but worth a try.

[Zazbag]

It sounds like depression talking, try not to blame yourself – how were you to know you'd feel this way? And if you had Hashimoto's like many of us, your body would be destroying your thyroid regardless of whether you consented – we can never have full control over everything and that's never our fault. Why aren't you on thyroid hormone replacement yet?

[Sasah in reply to Zazbag]

I didn't have hasimoto. I had a perfectly fumctioning thyrpid. I am not on meds as tgey said tge remainder had picked up and i don't need meds. I am 'just' in range.

[Thingybob in reply to Sasah]

Thats good news that you dont need meds 👍

[Stourie in reply to Sasah]

Hi, when you say just in range do you mean tsh and is it at the top of the range or the bottom? If it’s the top then you need to be on Levothyroxine. Jo xx

[Thingybob]

Same here. I had a goitre for 4 years, benign and all thyroid functions good so no action needed. Then it got bigger. Still all thyroid function was good. But the goitre was moving down past my collar bone and into the top of my chest. The biopsies were still showing benign but as the nodules got larger the accuracy declined so the 'unknown factor' increased. Plus i was mid 50s. The consultant advised op recovery would be better if i had the hemi then rather than later in life...so i went for it. That was 10 yrs ago. I felt just like you straight after it. I still wonder wether it was the right choice as i now take levothyroxine.......who knows 🤷‍♀️. But it also couldve worked out worse if left. The worse thing for me was the lack.of control over what was happening to my body. I had to accept that there are no right or wrong decisions, just do the best we can at the time . All the best to you 🙂

[Sasah in reply to Thingybob]

Ypurs sounded quite large. Mine waas 8mm and i am questioning why tgey bothered with tge FNA and all tge trama for a small nodule.

[Thingybob in reply to Sasah]

I had 2 one on the right section and one in the middle. , 2mm and 3mm , which is quite large. Didnt look large from the outside but was developing down and back , seen on the mri and needle biopsy

[nightingale-56]

Hi  Sasah , Just to let you know that you can improve on your present state. Don't give up hope. I had to have a Quick Sub-Total Thyroidectomy when 14 weeks pregnant with my daughter. I was diagnosed with Graves, given Carbimazole for about a year and then left with nothing until I got pregnant and had my Son, six weeks early and small for dates. He has Hypopituitarism with Septo-Optic Dysplasia. Were I treated properly (or at all), this could have been avoided for him. Still not treated, although still hyperthyroid, I fell pregnant again, but then had to have the Sub-Total Thyroidectomy. After op was given 25mcg Levothyroxine until daughter 6 weeks old. Pregnancy continued well after op and I gave birth normally, unlike that of my Son, which was by caesarean section for all 2lb 3oz of him. The op was in 1978 and I was not then treated by Levothyroxine until 1997. All then settled quite well, and medication was good until 2010, when something happened with Mercury Pharma and my Son, who was by now on Levothyroxine for his hormonal problems, and I began to have problems. We have both changed to other medication now, but my Son has different problems. I am fairly well again.

Just to let you know with the help of this fantastic group you will be able to feel much better than you do now. Wish you well and to feel better soon.

[jgelliss in reply to nightingale-56]

This Group is a Blessing .I am so so Grateful to all the very special Members. And let's not forget the Unsong Heroes who make it possible day in day out.

Thank You for Making our Journey Together more Possible 💗.

[Sasah in reply to nightingale-56]

Thank you

[Otto11]

I’m so sorry I feel for you. I had half of mine removed as I had an adenoma. That was 30 years ago & I don’t remember them doing any tests or giving me any information about the possible consequences. The surgeon just said it had to be removed & I believed him. I did ok though on Thyroxine till about 8 years ago when things started to go haywire. There’s every chance you will be ok without treatment or like me move on to Thyroxine at some point. Try not to beat yourself up ( easier said than done I know) as it won’t help things. There are knowledgeable people on this group who can offer help & support.

[Sasah in reply to Otto11]

Thank you...feel the same. The surgeon gave no consequnces. Treatbitblike extracting a tooth...no pre or post test unless i requested. Just taken out and job done.

[Sasah in reply to Otto11]

Can i ask at what stage... as in levels wise you decided to move onto Levo please? X

[Otto11 in reply to Sasah]

I think it was about 2-3 years after surgery that I felt unwell & was started on thyroxine. That worked well for about 20 years & iv'e been well until about 8 years ago when I started to feel exhausted & more. It was dismissed by my GP's for about 5 years as my TSH was within range (but it wasn't) The GP's at our surgery didn't understand about Hypothyroidism or test results. I managed to get a referral to Endocrinology then I found this group & they have helped me tremendously.

[Sasah in reply to Otto11]

So what is in range? Thatbis whatbmine is saying butbalso endo doesn't want to know. And i am struggling with fatigue. TsH 3.7 and t4 10.5.

[pennyannie in reply to Sasah]

Years ago with a TSH over 3 you would have been diagnosed hypothyroid - now the guidelines suggest the TSH needs to be over 10 - on 2 separate occasions months apart - unless there are positive antibodies of a thyroid AI disease -

It is a very cruel system we find ourselves in - the guidelines make no distinction as to whether you have had surgery or not, nor whether you are with a full or half a thyroid.

I believe you should be considered as needing T4 thyroid hormone replacement now - and a T4 of 10 is likely just in or just outside most ranges we see on here - and much to low to function on.

Can you see a different primary care doctor who may have some thyroid knowledge and understanding ?

[Otto11]

When you are taking Thyroxine then your TSH should be around 1 not higher. The range's differ from one lab to another but the range in my hospital labs is between 0.27 -4.2 but that's for someone who isn't taking Thyroxine. If you are taking Thyroxine then your TSH always should be around 1 or below. This currently dosn't apply to you so you don't need to worry about that . If you used my hospital labs range for someone like you who is not taking Thyroxine then as long as your TSH is below 4.2 then that's ok. Your's is currently ok. This is all quite new to me too so someone may come along with better knowledge but as I say at the moment you do not need to worry about any of this. If you look at your test results then after the figures (your's is 3.7) there will be numbers ie 0.27-4.2 this is the range your TSH should be in. Does this make sense.

[Sasah in reply to Otto11]

It makes sense. But on here most advice is also look qt your T4. The general advice on here to is above a 3 is hypo, especially with a.T4 of 10.5! Xx

[Otto11 in reply to Sasah]

It may well be the case that you need some Thyroxine. i'm guessing your GP is looking after your Thyroid levels now. I would mention your levels & see what their response is. x

[Brollca]

I think you did the right thing in having surgery. I had the opposite experience being told for many years that the lump in my neck was nothing to worry about. Following Covid I eventually got a theatre date and had a partial thyroidectomy. I went to my follow up appointment not worried about the result to be told I had had a 5.5cm tumour and it was cancer. I have since had the rest of my thyroid removed ( 2 small tumours found in second side). Now the oncologist is just trying to get me on the right dose of Levo after a year of TSH suppression. Latest decrease of levo caused me symptoms so just waiting for blood tests to see what TSH is doing.

Don’t feel stupid for agreeing to preventative treatment. I hope you get meds soon if you need them and you feel better soon.

[Sasah in reply to Brollca]

Thank you for replying