New on levo following partial thyroidectomy - Thyroid UK

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New on levo following partial thyroidectomy

pudules profile image
15 Replies

Hi, I had a partial thyroidectomy middle September. TSH kept creeping up and 2 weeks ago when it got to 6.2 and I was really feeling so tired and unwell physically and mentally (0.4-4.92) was started on 100mcg levothyroxine.

I’ve had a Merina cool in and not had any’loss’ for 3 months. All of a sudden started a cycle just wondering if it’s the levo and if in anyone else’s experience this settled or became an issue? Sorry if it’s tmi for some lol ,

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LAHs profile image
LAHs

I am not sure what a Merina cool is. You should have been on T3 only following a thyroidectomy (partial or otherwise). T3 only will prevent the regrowth of any cancerous cells left on the area where your thyroid was removed. Your doc is ignorant of this, you might want to bring it to his attention.

Beanieskeeper profile image
Beanieskeeper in reply to LAHs

I think she means a Mirena coil, as in the birth control coil.

Pudules yes, levo can cause what the leaflet calls ‘menstural irregularities’ which to me is code for mess them around and drive you crazy 🙄. It should settle down as your body gets used to it and hopefully you will start to feel better soon. I don’t know about the T3 only part as I’m hypo and have been for years but unfortunately what you should be on and what the local authority health people will pay for you to be on are 2 very different things! x

LAHs profile image
LAHs in reply to Beanieskeeper

Thanks Beans, I am years and miles from all that now, sorry for my ignorance.

pudules profile image
pudules in reply to LAHs

Thank you, I’m not sure about T3 and if it’s prescribed on the NHS. As it stands on levo has made me feel so much better. It’s coil not cool sorry for the typo lol.

I’ll see how things go as it’s obvious from the site there not a one fits all . Thanks again

LAHs profile image
LAHs in reply to pudules

Actually you are right about T3 being difficult to get, perhaps the suppression of TSH (via T3 only) after thyroidectomies should be brought up in the fight to reinstate T3 to patients in Britain. There is a lot of research on the topic, and that procedure is used in the US post thyroidectomy. Maybe someone forefront in this fight could collect some references and send them to your MP. I will have a look and list here, anything that will help in this scandal.

pudules profile image
pudules in reply to LAHs

My last t3 was ok so for now I’m going to see how I get on. I’ll be interested to see what it’s like when I’m tested again in December. I do feel like the levo is helping and it’s a balancing act so it’s good to have so many expert patients that can help.

SilverAvocado profile image
SilverAvocado

They've really put you through the ringer :( Your TSH has been rising slowly because your body has been using up all the thyroid hormone you made before the operation. T4 thyroid hormone has a half life of 6 days, so it takes about 2 months for it all to be washed out of your system.

TSH, thyroid stimulating hormone, is the meessenger chemical your body makes to call out to your thyroid to make more hormone, so as it raises it indicates the body is struggling more and more on the amount of hormone it's got.

Your body has been on a roller-coaster, the stress of the operation, shock of suddenly having reduced thyroid function and being left without treatment, and now getting a decent sized dose of synthetic hormone coming in. I think almost anything is possible, and you've got to rest a lot, hang in there, and see where you are when the dust settles. Every cell and organ in your body needs thyroid hormone, including your brain, heart, every muscle you use to walk around and do things, so all kinds of symptoms can pop up.

The most important thing is to make sure you get a new thyroid panel blood test in 6 weeks-ish, and have this dose tuned. Often we need quite a few back and forths to get the dose just right. It's possible this current dose is a bit high or a bit low, so you might feel not quite right for a while.

pudules profile image
pudules in reply to SilverAvocado

Silveravacardo thankyou, that makes so much sense and tbh makes me feel better as I’ve really never experienced anything like it, I went from running half marathons to not being bothered to shower! I was so tired, low, had terrible muscle and joint pains, fuzzy head etc etc etc. I did think I was going a bit mad!

Thankfully my GP is really good once he picked up on my rising TSH and 2 weeks into it I feel a million times better. Thank you again

Pudules

SilverAvocado profile image
SilverAvocado in reply to pudules

It takes about 6 weeks for the dose to settle down, it's a good sign that you felt improvement straight away.

If you're lucky, you may get back to where you were in a few months, but you definitely need to be gentle with yourself. Hypothyroid symptoms do feel like going mad, because they're very subtle, and its impossible to put your finger on exactly what they are.

pudules profile image
pudules in reply to SilverAvocado

To be honest I didn’t really take it easy following surgery as I did feel quite well and I know that was an error as it hit all at once. I’m now much more sensible and listening to what my body is telling me but a reminder is always good so thank you. I’m due another test in 4 weeks so I’ll have a better idea of how things are settling down on meds. My T4 was always on the very low side of normal (according to my GP) to begin with but TSH was always middle of the road in range. BW

SilverAvocado profile image
SilverAvocado in reply to pudules

Middle of the range TSH is very uninstal - in healthy people TSH skewed very much towards the lower end of the range with about 1-1.5 the most common. Once it gets above 2.5 there is almost certainly something going on. In contrast both freeT3 and freeT4 are a normal curve - those with healthy thyroids will likely be smack bang in the middle.

I had a thyroidectomy for cancer, and now that I know what to look for I realise I had the odd symptom going back years. In the months leading up to my operation my freeT4 was dropping and TSH rising, even though that's not what doctors would expect to see. It's possible something similar happened to you, and the pre-op blood tests already show you a bit ill. Or it might be that you always had unusual blood levels.

The most important number to know from where you were before is freeT3 - this is the number that most closely relates to symptoms. If you're on Levothyroxine, which only contains T4, you'll need your freeT4 to run higher than it use to in order for your body to convert it into enough T3.

SilverAvocado profile image
SilverAvocado in reply to pudules

It's definitely always worth a reminder to take it easy. Being hypothyroid is a serious condition that impacts every part of the body, unfortunately doctors see it as less serious and tend not to warn people :(

I find rest makes a huge improvement, and its always a good idea to cut your exercise and activity right back as much as possible, and then slowly creep it back up to where you find your level. You might find you always need to do a little bit less than you could before.

pudules profile image
pudules in reply to SilverAvocado

I was seeing the gp with fatigue water retention, feeling low etc etc etc I’d had a cyst 2011 about 2.5 by 2.8 on right side but it was almost totally fluid filled and was drained twice. Fast forward to 2018 and it had solidified and classed in the high abnormal range thy4 I think. Thankfully it was benign but my surgeon said it was a possibility ofcit turninf malignant so better out than in! It must have been a very scary time for you and I hope you are better now.

I do wonder if I was suffering with a subclinical hypo type thing before the surgery.

I can’t do what I used to excercise wise but I can do some and enjoy it so I’m grateful for that.

I’ll let you know how I get on 🤞🤞

SilverAvocado profile image
SilverAvocado in reply to pudules

I'm more of an unlucky one and am still quite ill 5 years later.

If you can still exercise you must be doing quite well, so hopefully you will get the dose personalised and get to where you need to be.

Good luck! 🍀

pudules profile image
pudules in reply to SilverAvocado

Thank you! I hope you too can start to feel a bit better xxx

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