Thyroid UK
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Total Thyroidectomy

Hello I am new here so firstly apologise if my post is a little confusing!

I had a total Thyroidectomy in September 17 and was put on 100mcg. After 6 weeks or so I went to see my GP with an Asthma related problem or so I thought but she believed my symptoms were down to the dose of levothyroxine so lowered it to 50 mcg. If anything I feel worse than I did before my operation so went back to request an appt with my GP but was told by receptionist that I did not need to see GP just to have my thyroid function test again I did and was told that the dose did not need correcting. I still feel awful, cold all the time, feel very low and mood swings, confusion, forgetfulness, very dry skin the list goes on! Went back today and asked to see GP no appointments so just ordered my repeat prescription and asked for a copy of my last thyroid function test so that I could come on here and see if anyone could help advise what I could do if anything I dont know what to do cannot always see the same GP and whoever you see i feel they dont really listen to any of my symptoms. (I am waiting an appointment to see the endo as last saw her before my op and was told I would have a follow up appt still waiting!)

Blood taken 11/12/17 results given 13/12/17

This is what the print out reads:

! Thyroid function test

(EL5636) - Hypothyroid

TFT results indicate under-replacement or non-compliance, if no recent change in dose.

! Serum TSH level 39.83 miu/L (0.27 - 4.20)

! Serum free T4 level 11.8 pmol/L (12.0 - 22.0)

Notes: Drug Therapy : yes

I haven't a clue what the results mean what I think is I am under-medicated from reading this but as this is all new to me and its very confusing I probably have got it all wrong! I would be extremely grateful for any advice or words of wisdom.

Thank you!

12 Replies
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I cannot believe your GP reduced your dose of levothyroxine. That's absolutely appalling and iit takes the biscuit of all the terrible treatment I've read on here. Have you got a consultant you are under because if so, you need to contact them immediately via their secretary and get an immediate increase in your thyroid medication. Likely you were undermedicated at 100mcg and it was causing you breathing problems if you've not had asthma before.

100mcgs is a small dose for someone who has had a total thyroidectomy. Your TSH needs to be around 1 or slightly lower to be well replaced so you can see that your TSH is much,, much higher and you will become very, very ill. Sounds like your doctor needs training in thyroid care. After thyroidectomy you should have a blood test every 6 weeks until you reach a TSH of around 1 with FT4 and FT3 in the upper third of the range.

You should also get your vitamin levels tested as your GP has now made you very hypothyroid and you are likely to have absorption problems which will cause low vitamin levvels. Get Vit D, ferritin, folate and vitamin B12 tested.

You should also consider whether the type of levothyroxine you're on is the best one for you. Always make sure you stick with one type of levothyroxine as they are not always interchangeable.

ps. non compliance means 'not taking meds' so make sure the doctor knows you did not miss a dose. It's quite common for doctors to accuse patients of this.

You are recieving appaling care. I would write to the practice manager and point out the problems you've outlined above and point out how very hypothyroid your doctor has made you. and that it's completely unethical to cause patients unnecessary suffering. Now you want proper monitoring and regular blood tests every 6 weeks, access to online blood test results and GP reviews until you are stable.

The receptionist was out of order to put you off seeing the GP but you now know that you have to absolutely insist and tell them it's urgent and you're likely to become extremely ill if they don't find you an appointment immediately.

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I couldn’t agree more. I had a total thyroidectomy in May ‘15 and currently take 150 a day, which is about right. - my TSH runs at c. 2 and FT3/4 are in the upper third of the recommended range. Your size and weight is obviously important - my endo told me that a good rule of thumb is 1.5 mcg for every kilo of body weight. I’m 90 kgs. And you’ve GOT to be consistent with when / how you take it.

If you’re 35 kgs then you’re probably on the right dose! Otherwise it sounds like you’re way under!!!! Good luck.

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Thanks for taking the time to reply! Always take it first thing in the morning at the same time give or take a minute or two and well before any breakfast or caffeine drinks. I'm about 5'2 and around 61 kgs. Will try and see if I can contact Endo secretary for an appt asap. Also going to see if I can research what all the ranges are etc as I have no idea what any of it means at the minute. Thanks again for replying.

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No worries - your test says you’re Hypo - if you take more thyroxine your TSH should come down and your FT4 should go up, which is what you seem to need. Obvs i’m not a doctor but, based on your post, your GP sounds like a half wit. Imo you need to refer back to a consultant or switch GP pronto.

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Jenks I would not agree that a TSH of 2.0 is correct for anyone after thyroidectomy

And your t4 and t3 could be higher

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Well it’s within the normal range and I feel great as things are. Everything else is in check so, with no other info on my medical history, what do you suggest the problem is?

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If you insist you feel totally well then its fine but its highly unusual

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Thank you for taking the time reply! You have given me a lot of information there none of which i was aware of so thank you so much! it really is appreciated. I am going to try and do a lot of research into what the levels should be as I have not got a clue. Great tip about the different brands of levothyroxine wasnt aware of this either i noticed that the last two i received have been different brands will try and make sure that the next one i get is the same as the ones im taking now.

Will def make sure to let GP I've not missed a dose always take it at the same time every morning give or take a minute or two and always well before breakfast and caffeine drinks. Will contact the Endo secretary next week to see if an appt can be made and will camp out at GPs first thing monday morning and demand an appt! lol.

Thank you again for your help definintely given me a lot to go on!

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Thank you for taking the time reply! You have given me a lot of information there none of which i was aware of so thank you so much! it really is appreciated. I am going to try and do a lot of research into what the levels should be as I have not got a clue. Great tip about the different brands of levothyroxine wasnt aware of this either i noticed that the last two i received have been different brands will try and make sure that the next one i get is the same as the ones im taking now.

Will def make sure to let GP I've not missed a dose always take it at the same time every morning give or take a minute or two and always well before breakfast and caffeine drinks. Will contact the Endo secretary next week to see if an appt can be made and will camp out at GPs first thing monday morning and demand an appt! lol.

Thank you again for your help definitely given me a lot to go on!

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Correctly treated your TSH should be 1.0 or below

Free t4 should be between 18 and 22

Free t3 should be between 5 and 6

If your thyroidectomy was for Graves Disease then your body will have been sensitised to very high levels of t4 and t3 and you will need a higher dose of meds than might be expected

However your latest TSH is way way over range at 39.83 and screams undertreatment no wonder you feel ill ...get back on the phone or in person at the doctors and make a huge fuss ...take with you a copy of Tofts latest paper along with the latest research bt Dr Midgeley both are on thyroiduk website and tell the GP that both articles are very clear on correct treatment of hypothyroid

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Thank u for u reply and information will take a look at the documents mentioned and will be going back to gps next week armed and ready!

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Take somrond with you prepared yo fight your corner and make sure they havecread Midgeley...remind your GP thyroiduk is an NHS choices website and that majority of people on its forum have either recovered their health thanks to its knowledge base or are like you seeking to find help which has not been forthcoming from gps or endos

The midgeley report is A1......the one from Toft is a huge climbdown from the deluded view BTA used to push out

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