Still so tired!: I had my thyroid removed last... - Thyroid UK

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Still so tired!

romy55 profile image
11 Replies

I had my thyroid removed last September and was placed on Levothyroxine, doses have been amended but i've never felt back to normal. I also take Vit D as was advised my immune system wasn't good. My thyroid levels were always normal but I developed a large goiter for the 2nd time and the thyroid gland couldn't be saved. I've gone from doing regular exercise to struggling to walk the local shop. My mood is not good and although I've changed my job and reduced working hours (wasn't coping with a stressful job) i still feel so tired - some days I could just lie on the office floor and sleep. My scar hasn't healed as well as I expected (they performed the 2nd op using the same scar line from my partial thyroidectomy) it's red and quite lumpy. I go for more bloods on monday as they've increased my dose to 100mg and want to check my progress. I just want to feel better...

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romy55
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11 Replies
shaws profile image
shawsAdministrator

Welcome to our forum and I'[m sorry you have had your gland removed.

Can you get a print-out of your latest blood test results, with the ranges and post for comments. If you don't have them today, put them on a new post.

Ideally doctor should test TSH, T4, T3, Free T4 and Free T3, B12, Vit D, iron, ferritin and folate.

Tests should be the very earliest possible, fasting (you can drink water) and allow 24 hour gap approx between last dose and the test and take afterwards. You get the best result by this method.

Also take levo on an empty stomach with one full glass of water.

romy55 profile image
romy55 in reply toshaws

Thanks thats really helpful, I'll make sure I don't take my medication before I get bloods taken on Monday and I'll ask what they are testing and get a breakdown of results. Will keep you posted

Sounds familiar except for using same line for 2nd operation. I have THREE parallel scar lines. No way should they have used the same line as the goitre would have attached itself to it when it regrew. It is likely that your body needs more than the single hormone levothyroxine. Many people without thyroid function feel better of a combination T3/T4, others, like myself do best on NDT. But you are unlikely to get either treatment on the NHS and would have to source your own.

Ask your doc as forcefully as you can what options of treatment he can offer and exactly what you are supposed to do about getting either of these treatment if he refuses to give them to you. On no account simply sit there and timidly accept any stupid suggestions. That's precisely what the doctors want you to do as they are either ignorant about thyroid issues or do understand the problems involved but are prevented from doing anything about it.

romy55 profile image
romy55

Thanks thats useful

Tamzin27 profile image
Tamzin27

Hi Romy55, I had my surgery last November and like you I had a second op to remove the other half of my thyroid. My surgeon did the incision on the same line and luckily it has healed without any problems. I did use a scar patch (can't remember what they are called now, see my profile page). Sorry to hear yours hasn't. I wonder what will happen if you use a patch on it now. I'm also struggling with my mood and hormonal issues, weight gain and tiredness. My endo and GP put me on 125mg Levothyroxine but I'm taking 150mg despite their disapproval. I want to be in the higher level of the normal range of T4 and T3. You seem to be on a smaller dose. We are all different I guess. Fingers crossed we find a way to feel better. I put a 6 months update on my profile earlier. Take care

barge5 profile image
barge5 in reply toTamzin27

hi tamzin,

i had my thyroid removed when i was 27. im almost 50 now and always felt my dosage was wrong, always cold, tired and gained over the years 3 stone. i have considered upping my dose as like you im on 125mg. have you noticed any changes?

from mandy

Tamzin27 profile image
Tamzin27 in reply tobarge5

Hi Mandy,

I replied to this post 2 months ago and since everything has changed. I actually reduced my medication from 150 mcg to 125 mcg. As a lot of members advocate for us to be in the upper level of the normal range of T4 and T3. Well, I can tell it didn't work for me. I feel better in the lower level. I kept a diary of how I feel on what dose and I keep a copy of my blood results to compare. I have since joined a gym and I'm going 4 times a week, doing both weights and cardio. I feel amazing and full of energy. I was totally wrong to think that the more Thyroxine you take, the better I would feel. Wrong, wrong! It was actually making me feel more sick. Yes, it's much harder to lose weight now. I've put on nearly 2 stone since surgery and it's much more difficult to lose. Since joining the gym, the scale hasn't moved but my clothes are fitting better. I haven't changed my diet yet. I socialise too much with food involved 😀. I've changed my mindset about the gym. I keep telling myself, I'm not going to the gym to lose weight but to keep my heart healthy. I'll be 40 next year, so my goal is to be as fit as I can. I hope you find a way. I was getting very desperate and I had to take control in my own hands. You need to find what's right for you. I truly believe it's trial and error with thyroxine. Oh, forgot to tell you, I'm also taking a multivitamin and calcium tablets from Holland and Barrett everyday. I was deficient in Vitamin D and calcium level was very low (one or two parathyroid was mistakenly removed during surgery). Good luck! Keep in touch and let me know how you are keeping. Private messages me if you want.

Tamzin

barge5 profile image
barge5 in reply toTamzin27

thank you for your reply, i was also vitamin D deficiency but thats another pain in the backside as you cant take it along thyroxine can you. has to have a 4 hour gap.

cut a long story short.when i was younger i was very thin, had a strange shaped neck and had my tonsils out at 26. couldn't swallow properly after that. had a scan a tumour was found on the thyriod gland (was benign mind you) had the thyroid removed and since then gained weight but never really done anything about it. had a full hysterectomy at 44 and that was it...ballooned! joined the gym and lost 1.5 stones....got married, endless bottles of wine, social life kicked back in ect..

hubby got very sick had to have heart surgery...exercise down the pan.

back on it again now but still always cold, always tired, nails are dreadful and im like a fish with scaly skin!

Tamzin27 profile image
Tamzin27 in reply tobarge5

Mandy, I looked at your profile, there's nothing on there yet. Write your story on your profile page and you'll get loads of support from other members too. I take my Thyroxine as soon as I get up (usually around 7.30am), have breakfast an hour later. I take my calcium tablets just after I've had lunch (around 12.30pm) and my multivitamin ( and Vit D when I need it) just before bed. Do you still have your bloods done regularly? Have you spoken to your GP? I'm sure having had a hysterectomy has also contributed to your situation. Worth getting your GP to check your hormones too.

Tamzin

barge5 profile image
barge5 in reply toTamzin27

my doctor does not do regular bloods, cant remember the last time i had one? i will phone up and ask. i take my thyroxine at 7 but never get chance to leave it an hour before breakfast, how important is that i wonder? and i have never had a calcium problem that i know of, never been brought up in 25 yrs or so?

my biggest concerns are weight and tiredness?

romy55 profile image
romy55

That is so helpful, thanks for taking the time to respond. I'm going to chase my doc re patch he was going to advise but hasn't. Also once i get blood results I'll feel better informed

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