Feeling wretched: Had a total thyroidectomy plus... - Thyroid UK

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Feeling wretched

Katmac21 profile image
7 Replies

Had a total thyroidectomy plus parathyroidectomy 6 months ago and since then I have been feeling totally wretched. Three stone in weight gain in 6 months, feel so lethargic it's not true, aches and pains everywhere, wish I hadn't had it done, but it would have been a matter of life or death sooner rather than later

Anyone else experience similar and if so how do you cope or get over it, I really can't cope with the weight gain, I have always been small but wearing size 20/22 now and it's destroying me :(

Thanks

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Katmac21
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SeasideSusie profile image
SeasideSusieRemembering

Are your thyroid levels being checked? What are your latest results?

Have you been started on Thyroid replacement hormone (Levo)?

Katmac21 profile image
Katmac21 in reply to SeasideSusie

Hya, yes, I've been having regular bloods taken every 6 wks, surgeon wants to get them to 2.5 for tsh - don't know which one) in January endocrinologist upped my levothyroxin to 150 from 125. Started levothyroxin the day after my op, also calcium, vitamin d

SeasideSusie profile image
SeasideSusieRemembering in reply to Katmac21

You are unlikely to feel well with a TSH of 2. 5, generally most people feel best when it is around 1 or even below. You will have to see how you feel and ask for an increase if necessary. Most people feels best with FT4 and FT3 in the upper part of their reference ranges and a TSH level that achieves that.

Presumably they are testing your calcium levels too. What they are unlikely to mention (because they're not usually taught it) but D3 aids absorption of calcium from food so along with the calcium you are prescribed you need that calcium directed to where it is needed, which is bones and teeth, and away from arteries and soft tissue where it can be deposited and cause problems such as kidney stones, hardening of the arteries, etc. Taking Vit K2-mk7 will direct the calcium to where it needs to go.

Katmac21 profile image
Katmac21 in reply to SeasideSusie

Wow, you are knowledgeable, I feel, though, that how can I, a patient, tell a consultant what I should be at and what medication I should be on, I just wouldn't be assertive enough

Calcium levels are OK, and tested regularly but just taking vitamin d just on a daily basis. I also take ale droning on a weekly basis

Where would I get vitK2-mk7 from? Blimey it sounds like a formula I use in work!!!

Thank you for your advice, can't remember what my FT 4 and 3 are, will ask Dr when next have apps, thank you so much

SeasideSusie profile image
SeasideSusieRemembering in reply to Katmac21

"how can I, a patient, tell a consultant what I should be at and what medication I should be on,"

You read, research, arm yourself with with good evidence from reputable sources, then discuss. If they are anywhere near decent they will listen and discuss with you. If not then ditch them because their egos are bigger than their knowledge and they will keep you ill.

Here is part of one article, written by Dr Anthony Toft (past president of the British Thyroid Association and leading endocrinologist) for Pulse magazine (the magazine for doctors)

thyroiduk.org.uk/tuk/about_... > Treatment Options

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can on obtain a copy by emailing Dionne at tukadmin@thyroiduk.org print it and highlight question 6 to show your doctor.

You can say that you have taken advice from NHS Choices recommended source of information about thyroid disorders, which is ThyroidUK. Don't mention the Internet or forums as they don't like that.

Take someone with you to your appointment, they don't have to say anything (unless you want their support) but just having a witness with you can make a difference.

**

"Where would I get vitK2-mk7 from"

bigvits.co.uk/product.php?p...

Good brand, only 2 ingredients so no unnecessary excipients /fillers.

**

Ask at reception for a print out of your test results, here in the UK we are legally entitled to them under the Data Protection Act . Don't accept hand written or verbal results, mistakes can happen, get a print out and make sure the reference ranges are included. Don't bother asking your GP, they will ask why you want them and find a reason to not give them to you.

PS - I've just seen that SlowDragon has also quoted the information from Dr Toft's article, plus given a link to his new article about T3 may be necessary for some patients.

SeasideSusie profile image
SeasideSusieRemembering in reply to Katmac21

Forgot to say, the weight gain will most likely be due to undermedication. As I said, TSH of 2.5 is too high, but you really need FT4 and FT3 testing. T3 is the active hormone that every cell in our body needs so that is the most important test. If FT3 is low, you will have symptoms and weight loss will be nigh on impossible.

What dose of D3 are you taking? Are you taking it with the fattiest meal of the day which aids it's absorption? And taking magnesium helps your body use D3.

SlowDragon profile image
SlowDragonAdministrator

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy

rcpe.ac.uk/sites/default/fi...

Essential to test B12, folate and ferritin too

Strictly gluten free diet may help as well

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