Still not feeling well 5 weeks after partial thyroidectomy

[Polly1963]

Hi everyone

I had a partial thyroidectomy 5 weeks ago. They removed the right side as I had a 5cm nodule (plus some smaller ones) which were growing down into my chest and pressing on my windpipe. The operation was not straightforward as I had a haematoma and had to go back into surgery for over an hour, on top of the 1.5 hours to remove half of the thyroid. This meant 2 lots of anaesthetic and the breathing tube going down twice.

I am feeling exhausted most of the time and feel I can't cope with any type of stress. I feel anxious, dizzy and have a constant ache between my shoulder blades. I saw the consultant last week and he didn't seem concerned. He said it would take a couple of months for my body to get over it. My TSH was tested last week and it was 1.3. I will ask my doctor to check my T3 and T4 after Christmas. I'm taking a thyroid support supplement plus magnesium and calcium.

Is it normal to feel like this 5 weeks after? I'd be grateful for any feedback from anyone else who has been through this. Thank you.

[MissGrace]

Hi Polly1963. I’m sorry I can’t help with specific advice. I’m sure someone on here can. Sounds like you’ve been through one hell of an ordeal so give yourself time to mend. It’s not an easy operation I’m sure and you’ve had added complications. I really hope you are feeling better soon and wanted to send you all my good wishes and big hugs. xxx

[Polly1963 in reply to MissGrace]

Thanks so much MissGrace. That means a lot xx

[morehead]

I had all my thyroid removed. Also had two surgery's. First one took out a large nodule and my surgeon said did not look like cancer and sent me home. When back to get my stitches removed and go the news it was cancer Follicial and I went back and had the second and followed up with RAI. This has been three months ago and I still have salt taste in my mouth. Muscle pain. Taste not right, losing muscle. My medicine is not right yet. I am a mess.

[Polly1963 in reply to morehead]

So sorry you are suffering morehead. Really hope you feel better soon.

[Nanaedake]

What sort of thyroid support are you taking and does it contain iodine or iron? If so, you are probably better off not to take it unless you've been adivised to do so by your doctor. Ask your GP to check vitamin D levels. Apparently, good vitamin D levels may aid recovery.

[Polly1963 in reply to Nanaedake]

Thanks Nanaedake. It contains Iodine and Iron! I've only been take it for a couple of days so will stop. Just curious as to why I shouldn't take Iron and Iodine. The calcium supplement I take has a small amount if D3 in it. I do have some D3 (2,000iu) supplements. Do you think I should take one of those over Christmas until I can get my levels tested? Thanks so much for the advice. I appreciate it.

[Nanaedake in reply to Polly1963]

If you take a supplement with iron in it will prevent you from absorbing other vitamins or minerals in the supplement. If you don't need iron you shouldn't take it so you need a blood test to check iron levels. If you need iron it should be taken as a separate supplement at least 4 hours apart from levothyroxine.

You should get your vitamin D levels tested before supplementing with D3. Vitamin D3 can be toxic if you supplement too much so that you tip over the top of the lab range. That's unlikely as i've read there is a law of diminishing return with vitamin D, in other words, you absorb less the more sufficient you are, however, you should still test vitamin D to ensure you take the correct amount and do not exceed the lab range.

You should get iodine levels tested before supplementing with iodine. It can interefere with thyroid function, I believe, especially for people with thyroid antibodies. You are best to optimise your diet and make it nutrient rich.

At TSH 1.3, your thyroid levels are normal at the moment. The new thinking is to wait and see if you need it as you really don't want to take levothyrxoine if you don't need it.

Some types of anaesthetic can knock vitamin B12 levels so I would be inclined to get vitamin D, folate, ferritin and B12 levels tested. Once you have the results then post on here for advice and people will respond. Doctors may say levels are alright if in NHS range but that doesn't mean they are optimal.

[Nanaedake in reply to Polly1963]

You could take a vitamin C supplement while waiting for blood tests. Vitamin C is not stored in the body and helps with many functions. Magnesium citrate as a supplement or magnesium salts in the bath may help to restore minerals you've lost. Worth a try anyway.

[Polly1963 in reply to Nanaedake]

Thanks very much Nanaedake. Today I have come down with a horrible cold virus so maybe that is why I have been feeling rubbish. Am taking Vitamin C and and will take Magnesium before bed so will see if that helps. Will ask for the blood tests after Christmas and report back with the results. Thanks for your reply.

[Polly1963]

I'm not taking any meds from the doctor as they don't think I need it. It's a natural thyroid support I got myself which contains Iodine, Selenium and Iron. I'm going to stop taking it after Nanaedake's advice above. Thanks.

[SusanAR]

I had my thyroid removed a couple of years ago. It took me at least 6 weeks to feel even half ok and that was doing nothing at all - my children were old enough to cope by themselves and my parents were coming over every day to make food and clean for me. And my operation was very straightforward.

My GP at the time was great. She said that all my energy was going into healing my body and that I should just sleep as much as I could.

I remember feeling very frustrated because I was used to doing everything for myself and wanted to be back to normal quickly but I just gave in and watched Netflix in my bed and slept.

I don’t have a time frame for when I felt better because 8 weeks after my thyroidectomy I was back in having a huge twisted ovarian cyst removed!

You just have to give your body time to heal and get over the operation.

I hope you start to feel a bit better soon.

[Polly1963 in reply to SusanAR]

Thanks so much for your reply, it is very reassuring. I went back to work after 3 weeks (on a part-time basis) and found it really tiring. I think I underestimated how much of a toll the op would take, so I think I will rest a bit more. I'm off now for 11 days over Christmas so will definitely take your advice. Thanks again.

[SusanAR in reply to Polly1963]

3 weeks is far too soon! I was still sleeping all day at that point. I think I was off 6 weeks then went back mornings only for 2 weeks then was off again for my next operation! (That one was keyhole so a quicker recovery).

Hope you can get a good rest while you’re off and enjoy your Christmas.

[Polly1963 in reply to SusanAR]

Thank you. I will be kind to myself over Christmas and rest when I need to. I hope you have a lovely Christmas x

[Polly1963]

Thanks Grincho, I will. I will insist in further blood tests after Christmas. I hope you are back to full health now as it sounds like you had a very rough time.

[Hidden]

I had my thyroid removed three years ago in France by a very experienced surgeon. They don't do partial only full removal to avoid more surgery. My windpipe had to be repaired too. Your parathyroids should have started working again by now, so why are you taking calcium replacement? Your body will take a few weeks/months to recover and you need to be on the right medication to feel well again. Did you have an experienced surgeon?

[Polly1963 in reply to Hidden]

Hi Bunnyjean. Yes, I had an experienced surgeon. When I saw him last week he said it may take 2 months to get over the 2 lots if surgery so I think I need to be more patient! Today I have come out with a horrible cold virus so maybe that is what has been making me feel awful. Thanks for your reply.

[Hidden]

I take Vitamin C now to ward of colds, I have also upped my Vitamins D which all helps.

I am sorry that you are unwell, you are right about the patient thing, Happy Christmas x

[Mionaonthehill]

I had partial thyroidectomy in June this year and it took me a lot longer to recover than I expected and that was with a straightforward surgery! If truth be told, I have never really felt well since that surgery. My GP has been pretty hopeless and I was feeling so bad with numerous symptoms I started doing my own thyroid checks privately and as I started to see my TSH rise, I went to see a private endocrinologist who diagnosed me with Hashimoto’s and hypothyroidism. She started me on levothyroxine medication but when I went back to my GP to have my care continued by them, they claimed they never received the consultants letter so I had to give them a copy before they would do anything. Then they reluctantly agreed to give me medication on a trial basis pending another blood test. When the results of that blood test came in they hadn’t even tested my thyroid! They had tested my parathyroid and it came back abnormal but no explanation, all the secretary said was I had to redo in a month. I am now chasing up my medication. Because of all this, I am very close to just medicating myself. I have already increased my levothyroxine from 50mgu to 75mgu by buying some off the internet and monitoring my blood work through private blood tests. I have started to feel much better on this higher dose but based on my bloods and reading this forum I believe a further increase to 100mgu might be needed. If my GP continues to show no interest and won’t do anything, I will take control 100%. I do hope you get back on track soon. My only advice is to be your own advocate and keep onto your GP if you don’t feel right. Good luck on your thyroid journey.