Post thyroidectomy

Hello everyone my name is Andrea I am 52 year old mum of 2 and 2 grandchildren. Last Thursday I had a total thyroidectomy. Immediately after surgery I felt great, they kept me in for 2 days in which time I felt on top of the world. Mobile and happy lchatting away to all the doctors, nurses and staff. And other patients, I cheered everyone up. They only started me on the levythroxine the day I was discharged. 125mcg. I felt positive, well, happy and full of energy as I said my goodbyes. Then almost as soon as I got home. I was a bumbling wreck. My movements and speech had slowed right down. And I was a jittery anxious wreck. Bless my daughter who held me like a baby, and looked after me. The next morning I was abs terrified to take that drug again, so going by sites I’d researched where they work out dose by weight, I worked out I should be on 90mcg. So I took that the next 2 morning. I wasn’t a jittery anxious wreck anymore, but I was very very down, crying by the minutes. And still slowed right down, with no energy to even lift my head up. I rang the hosp ward and spoke to one of the lovely doctors whom I’d met in there. He advised I up the dose. So today I have taken 110mcg. I feel somewhat better, in my head. And self. And also find I feel better going to bed and soon as i wake up. I feel after 2 hours of the thyroxine in my system tho, I drop again. I know it’s early days. But I’m terrified by all the horror stories of ppl post thyroidectomy. And also horror stories about the levythroxine. Please can someone assure me things will get better. Iv read so many things about, how it’s not just T4 but how u convert T4 to T3 and how the adrenals might now be affected, and insulin levels etc. I’m finding it hard to be positive with all this. I did suffer years with hyperthyroidism but I was always bright n bubbly, with life in me. Well I feel they have took my battery out. My mojo. And it’s going to be a minefield/battlefield to find my balance. Also bf had already booked us to go krakow 2nd Dec. I only had my op last Thursday. Do u guys think I’ll be ok? And any advice. Please help me see some light. I feel desperate!!

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Your body is recovering from the surgery as well as getting used to Levo, you have to give things a chance to settle. The vast majority of people do absolutely fine on Levo you just don't hear about them because they are off living life and have no need to be on a forum. Take things easy and hopefully you will start to pick up soon.

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Thank you. Yes everyone says just give it time.

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Don't worry and yes you will be well. It might be gradual as thyroid hormones are supposed to be increased slowly and my personal belief is that people whose thyroid gland has been removed should have a combination of T3/T4.

Most of us have a thyroid gland which has slowly become dysfunctional but if doctors listen to us hopefully they will stand up to their job so that you can return to good health again.

Members will help you to do so as most of us on this forum are here because we found it difficult to recover our health for one reason or another.

You have had a thyroid gland removed and the hormones it sent out ran your whole body from head to toe. You also mention your battery has gone - T3 (liothyronine) is the battery needed in all our T3 receptor cells.

T4 is a prohormone - inactive - and its job is to convert to T3. We have to gradually work up to a dose which gives us sufficient T3 that's why I think a combination works better for thyroidectomy patients.

When you have blood tests it should be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your dose of levo and the test and take afterwards. Levothyroxine should be taken first thing on an empty stomach with one full glass of water to avoid tablet sticking in our throat.

You then wait an hour before eating. Food can interfere with the uptake of hormones.

GP should also test B12, Vit D, iron, ferritin and folate - all have to be optimal.

You've had a shock to your system which you weren't expecting and

I don't think doctors prepare patients sufficiently as to what may occur.

Levothyroxine takes about six weeks to build up in our system with 25mcg rises each time till TSH is 1 or lower and Free t4 and Free T3 towards the top of the range. So slow and steady is the name of the game.

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Thank you. It gives me hope. I’m just having a bit of an anxiety attack as we speak. I’ll speak to my endo about T3

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There's a wide range of clinical symptoms - thankfully we don't get all of them :)

thyroiduk.org.uk/tuk/about_...

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Will I feel ok in 2 weeks do you think?

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My god that’s some list

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Probably you were able to tick off more than a couple :)

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We cannot guess how long it takes to feel well. Some are more quick than others.

I can only talk about my own experience and that would probably not be good for you at present.

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Most Endos wont prescribe T3 now that is it is so expensive but you can put up a fresh post if he refuses and you can buy some of your own to add to levothyroxine.

Members will guide you how to do so.

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MMAndrea52,

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

thyroiduk.org.uk/tuk/about_...

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Should I insist on test for ft3 and f4

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MMAndrea52,

You can certainly ask but I think if FT4 has not been checked your practice may have an agreement with the lab that only TSH is required. FT3 is rarely tested in primary practice unless TSH is suppressed <0.03.

If your practice won't test anything other than TSH you can order TSH, FT4 and FT3 via thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.

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Thank you

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MMAndrea52,

I wouldn't bother to order private thyroid tests for 3 or 4 months because it will take time for your thyroid levels to respond to Levothyroxine and dose may need adjusting after 6-8 weeks to optimise levels.

I think thyroid tests are probably quite inexpensive in Krakow as a few members get their levels checked when they go home for visits.

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Doctors underestimate how long it takes for the body to adjust to thyroidectomy. And I think patients often underestimate it too because they are not told it's a process. Everything about thyroid is slow, the way the hormones work, the adjustment, the length of time between blood tests (6 weeks) initially. You can't expect to bounce back quickly so you just have to fix in your mind that you need to slowly nurture yourself back to health. Tell the people around you it's a long slow process and don't expect you to be right bacck to your old self just like magic!!

Although your family can't see your injury as they would if you lost a visible part of the body, it's just as major as that. However, people do make a recovery and get back to normal life at some point. Anaesthetic can have variable effects on people. Get your vitamin levels tested next time you have a blood test as surgery can knock them.

Try to do things that are calming and shut out stressful things or people for the time being. Just do the things you love to do. Hormone imbalance can make you feel very weird but it will settle eventually. I had most of my thyroid removed and I've had lots of ups and downs learning to live with levothyroxine but I'm working full time in a job I love again and coping. You might find you'll always need to give yourself some slack though.

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Thank you. I guess I am expecting too much too soon. But I keep getting really worked up with the fact pre op I was swimming 3x a week. I’d cut out 1 of my 2 blood pressure tabs and never had high bp after. My cholesterol was down. So I can’t help think that’s why I feel so awful because it was a perfectly healthy thyroid. And now my body has gone into Total shock without it. That’s what it feels like. I’m an emotional wreck. The doctors are not listening at all. And just say my upcoming holiday will do me good. But I’m terrified il have a huge anxiety attack. My bf who has booked and paid for it says the same. He says oh youl be ok once we’re away love we shall take it easy and it will prob do u good. But if I’d of known what I know now. I would of cancelled everything for the next 6 months post op. I am feeling slightly better each day tho, in myself u know. And lots of positives in I am sleeping, I am eating well. Not constipated. But yes your right I guess I just got to cut myself some slack!!

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It's not unusual to do poorly after thyroid surgery and really, doctors should tell patients pre-op that this could be the case. It's really unfair to expect patients to bounce back because it's not the case for many. It's a long bumpy road back to reasonable health for some patients. I hope once you get past the 6 months hump you'll start to feel better but you must keep an eye on your vitamin levels. Levothyroxine is not a wonder drug. It's a difficult drug to manage, it affects your gut function which has knock on effects. A lot of this has not been properly researched and doctors are very ignorant of the impact of losing thyroid as a result.

Extreme anxiety, fear and a sense of doom is not unusual. Doctors will say it's depression but I don't believe that to be the case. Your body senses something is terribly wrong that it has not had time to adjust to. My non--medical view is that your body tries to compensate for lack of usual thyroid hormone symphony by releasing huge amounts of adrenaline and this causes horrible symptoms that can cause extreme physical and emotional reactions. It doesn't mean you are losing the plot, it's just an enormous physical adjustment that affects every one of your body systems.

Doctors generally offer anti-depressants but unfortunately they don't help and actually cause other problems and side effects. Optimising vitamin levels seems to be one thing patients can do that is not harmful so long as you get proper blood tests and monitor leves. It helps to calm your body when you are well nourished. Removing unnecessary stress from your life until you recover can also be a help. You may find contact with people/family that you enjoyed before is now stressful. Swimming will be a good activity when you are able to resume but don't expect to swim with quite the same vigour.

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Thank u. And I fully agree with U. I just said I think my body is in shock and trying to compensate. No they never warned me of this, as, as you say they do not know. They bang on about it’s just a matter of converting T4 =T3. They seem quite unaware and ignorant to the fact that it is the whole thyroid pathway we are dealing with. Yes I take my vitamins, and did so for some time prior to surgery. I’m hoping that will aid in a speedier recovery. I was also swimming 3x a week. I’m wondering when I can resume that. Prob after the 2/3 week mark eh!

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Did you have vitamin levels tested before supplementing? What sort of vitamins are you taking?

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I have 1 nature’s best yakobee with mix of vitamins and minerals. I also add a scoop of raw organic cacao powder. And sprinkle on chia seeds to add a healthy fat. Iv had this every day for months prior to surgery and now after. When i was hyper doc precribed high dose vit d and c twice a week.

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Have you had vitamin levels tested since doc prescribed vitamin D?

I can't find yokobee in the Nature's Best products. I'm guessing it's some kind of multivitamin. I would suggest that most multivitamins will not have the potency required if you are deficient. They will also not usually be in the most absorbably form which is necessary for people with thyroid conditions taking levothyroxine.

Check whether your multivatamin provides vitamin B12 as methylcobalamin.

Most multivitamins provide B12 as cyanocobalamin which is the least absorbable form. Folate is best as Methylfolate rather than folic acid, Vitamin D needs to be in the form of D3 and needs to be taken with magnesium and K2-Mk7 for best absorption and maximum impact.

If you have no deficiencies and vitamins are all in mid-range with B12 near the top of the laboratory range then a multivitamin won't do any harm although it probably won't make much difference either but you need to find out by having blood tests.

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Yakobee is a powder u add water too. Not nature’s best but it says something like it’s all natural ingredients. When i asked my endo to check my vitamins she said she doesn’t see a need as levo doesn’t affect that. So while waiting to get my bloods done I ticked all those boxes I’d been told to get checked on here. Yes I was naughty but this is my health. I’ll get them results Wednesday. I’ll ask for a print out of all my results and show u when I get them

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Good you'll get the results of vitamins, your Endo should read the posts on here and then she'll see that vitamins are connected to thyroid conditions, both low vitamin levels and lack of absorption.

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When u say not with as much vigour. U mean now. But I’m hoping as time hues on. I will get my pre op energy back

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Hopefully you'll get all your energy back, yes, but some people never have quite so much energy and things they sailed through before just feel harder afterwards.

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You need to insist on tests now for

Ferritin

Folate

B12

Vit d3

They get trashed and levothyroxine cannot be utilused oroperly by the body till they are all at least halfway in their ranges ....so you may need heavy supplementation

Your body has been hit hard by thyroidectomy and it takes time to stabilise my husband was a wreck for 6 weeks after his

Start now by always taking at least 2000mg of vit C in divided doses every day

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Agree with what everyone is saying, especially about the vitamin C.

My son has just amazed his doctor with the speed of his healing after a huge op to replace two damaged vertebrae - C5&6. They went in through the front of his neck and my husband is doing well after a hip replacement. I put their success down to the fact that got both of them taking high strength vitamin C in advance of their operations, they are both still taking it. I was advised by my pharmacist to take vitamin C when my Graves was first diagnosed and when I started on carbimazole and I’d say I did well.

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tell them to add magnesium and boron too

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Hi i did ask for them tests. But for months pre op I’d switched to a healthy diet with some supplements. Of raw organic cacao, for magnesium, Brazil nuts, and mix of vitamins inc B’s.

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It’s happened again. I take my levy soon as I wake at 7am on empty stomach with plenty of water. Around 2/3 hours later I take some painkillers. I get up have breakfast. Potter about. I’m in a slowed mood then my movements and speech. Then into the afternoon i start to get into a huge anxiety attack. It lasts for a few hours. In which time iv rang the hospital ward in a terrible state. Im a jitterring wreck. Then it slowly subsides. And now i am in what I’d say a very calm balanced state. I’m sure I’m having some kind of reaction to the levy, as in the morning when I wake I’ll feel calm and quite ‘normal’ till that anxiety engulfs me in the afternoon. I just like to say. Thank U all so very much.for your help, advice and support. Each and everyone of you. Much love to and good days wished to you all 💕

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I think there is a tendency to acknowledge the actual surgical process as being the sole impact on the body ie what is being repaired, removed, replaced, or mechanically adjusted; but the full impact of surgery is a combination of the stress response (the hormonal and metabolic changes which arise as a result of the trauma of the surgery, encompassing a wide range of endocrinological, immunological and haematological effects); the effect of anaesthesia on the stress response (for instance, opioids suppress hypothalamic and pituitary hormone secretion); and put at its very simplistic, patient attitude. Re the latter, I recently had three surgeries within 2 yrs and I both went in and came out perfectly relaxed and okay - in fact one patient insisted on actually arguing with me that I "must" be feeling anxious and was just kidding myself and her that I was perfectly calm and relaxed. However I am now awaiting cardio surgery and whether I will be quite so sanguine come the day, is another matter entirely .... Seriously, it is a tribute to the wonderful and intricate design and adaptability of our body that the whole system works as well as it does despite traumatising it with surgery; but it also explains why we can feel afterwards that we are going through the emotional mill - anger, resentment, feeling flattened, frustrated etc etc can all be perfectly normal reactions to surgery. Then when you add in that it's your thyroid gland that has been removed rather than say, your appendix, it's not surprising. There's lots of info if you want to understand more about the effect of surgery and why you feel as you - for instance, cortisol secretion from the adrenal cortex increases rapidly following the start of surgery, as a result of stimulation by ACTH - but this is a link to an interesting informative paper, albeit dated 2000, just a quick perusal of which, if you're interested, might help you get to grips with the breadth and depth of the complexity of what you've been through, not withstanding your ongoing need to replace your endogenous hormones with synthetics. academic.oup.com/bja/articl...

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Thank you

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Hi all just want to say a great big thank you to u all. And the admin of this group. Yes I am on a high at the minute, listening to queen and George Michael. Find me somebody to love. Tuneee. Can’t wait to get me voice back. I’m a boss singer u know ha. You have all given me hope and good advice. Here’s to better days for all of us !! 🤪😂💕

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