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Graves’ disease. Total thyroid removal

I have Graves’ disease. Had total thyroidectomy 10 years ago, been on 150 mgLevothyroxine for years.

May blood test TSH -0.05

T4 21.2

Thyroxine reduced to 125mg

Over Last 9 months have had thyroxine reduced to now 100mg,

Feel dreadful. Freezing cold, extreme tiredness pain all over. Latest bloods result today

TSH 0.2

T4 18.6.

G.P wants to reduce further. Any advice appreciated. Thank you

36 Replies
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I am also a Graves/Thyroidectomy patient and I would say firstly, do not reduce your Levothyroxine and secondly try to change your doctor, who is making you unwell. He is looking only at your TSH result and has absolutely no idea that your free T3 is probably under range. You can try to get him to test free T3 but the laboratory tends not to do it, even if the GP requests it. I have a constant battle with mine. You can get all blood tests done privately if you look on Thyroid UK’s site. You also need to check iron, ferritin, B12 Folate and Vit D as these all need to be good for proper conversion of your Levothyroxine.

When you have results, post again for more advice. It may be that in future you will need to try to get T3 and use in combination with your Levo but wait until you get results to decide the next step. In the meantime, if you have enough Levo, I would suggest you keep on with your original dose (but not until you have had the bloods done.)

It is often the case that Graves patients can feel fine for many years on just Levo and then suddenly it all goes wrong. This happened to me. I think we stop converting properly because of low vitamins and somehow never get back to the way we were before.

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Thanks for your reply. Will look into getting bloods done.

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We often read on the Forum of members having their doses reduced due to the TSH reading. Once we are taking thyroid hormones - it is also very important to have the FT4 and FT3 tested together. You are only over-medicated when the FT3 is over range. commonly overlooked by Doctors.

Private Testing is available through Thyroid UK - so have posted the main website in a link below - then Click onto - About Testing - to reveal the companies involved in sending out Home Testing kits ...

thyroiduk.org

So many members on the Forum use this method in order to have the tests done that are not carried out by the NHS - unless you are very lucky :-)

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Thanks Marz. I will look at getting these tests done.

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If you use Blue Horizon 11 (I think it's the 11, might be the one before that) you get all the relevant vitamin and mineral tests done at the same time with the same vial of blood).

That doctor has no idea what he's doing.

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Absolutely completely inadequate just testing TSH and FT4

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, and then frequently TSH stays low and conversion of FT4 to FT3 gets worse

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

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

Come back with new post once you get full Thyroid and vitamin results and ranges

Very common to need regular supplementing of some or all these vitamins to maintain good levels

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Thanks for all the info Slow Dragon. My tests have been at random times throughout the day. The last one at 2pm. I have always taken my thyroxine before breakfast and they note this. I will take yours advice, thanks. I had very low Vitamin D 2 years ago and was given a high dose course. I asked for a re test but was refused as told “it always works so quite unnecessary “!!

I have heard that GPS are unable/unwilling to accept private blood test results. Do you know if I am likely to have a problem with this.

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Well if vitamins on private tests show deficiency then GP either has to accept and treat, or retest using NHS test and still treat deficiencies

If vitamin levels are low, but within range, you can self supplement

Come back with new post once you have results and ranges. Members can suggest next steps

Some GP's are happier than others to accept private tests

Many GP's know we need FT3 testing and it can be difficult to get labs to do this. Personally my GP is happy to accept my private test results. I am prescribed NHS T3, but struggle to get FT3 or vitamins regularly tested on NHS

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Thank you SlowDragon. I am feeling more informed

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I would insist the GP takes a full thyroid panel including free T3 before he even considers instigating lower your dose, I would also ask him/her to test you B12 and vit D. The only active part of your thyroid is your free T3 how can they assess without knowing that, I would pose those awkward/difficult questions to them because it is your health and to be honest your medication is vital to your wellbeing and that should be paramount to the GP ask why are they considering lowering it and state T4 is inactive do they know that , I’ve done that before and they get very annoyed but it’s not their health it’s yours.

I also have Graves’ disease , diagnosed 2011, I wasn’t offered any alternative to block and replace or titration until late 2018. My endo is now insisting that I consider either total thyroidectomy or RAI I have so far refused to consider either as In the UK T3 bloods are not taken into account when prescribing which is absurd in my opinion and I have said that I might as well be on 5mg carbimazole indefinitely as ineffective (past experience) leyothroxine. Last year I also felt extreme cold, what was helpful was high dose vit D3 during the winter months. I think it is shocking that our nhs is so poor at managing their buying options for medicines T3 medicine in Europe is between 2-26pence per tablet here in the UK £9 per tablet ! What is that about? Heavens above it is beyond explanation.

T3 is now not available on nhs prescription because of cost but surely it should be the buying power of the nhs that should be held accountable and not the people that need this vital active hormone that should suffer.

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Good for you ...at least with Carbimazole you are using your OWN Thyroid hormone and not one made in a Laboratory

I have Graves and have been Euthyroid since 2014 and feel just like my old self.... again

Mx🌹

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Madge any tips on staying euthyroid for 4 years. I have only managed 14 months in 8 years.

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Yes ...of course ..

What happened was this !

My doctor refused to see that I was becoming very ill indeed he said I was going through menopause ! 😱

I was in bad shape I sweated ... non stop 24/7 I shook like a leaf , my voice was shaking, my toenails were falling out , front of my legs were bone dry and flaking , no eyebrows and few lashes , no body hair whatever

💥P A I N🔥 ... in big muscles of arms legs and back .... somebody words would not come out of my mouth, I would stop to try to say a simple word

like ... cat or dog ..

I simply could not say the

word ! (Brain fog)

All Those above and more ..

The Anxiety was overwhelming ... I told my Endocrinologist ... it’s like driving downhill at 100 miles an hour .., and discovering that you have ... NO BRAKES 😱😱

And So ....I realised my GP was not knowledgeable in the subject of Thyroid disease ..

In the depth of despair .. and believe me at that stage, I did not want to continue with my life !

... I made a private appt. . with a lovely lady dermatologist , because of the rash I had with sweating so much !

As soon as we met we ‘clicked’

She was so kind and empathetic !🌸 I will never forget her kindness when I was at my lowest ebb!

After a few minutes she announced !!

Menopause ????

.... You have a Thyroid

disease !!! ... and I’m writing to your GP right now to tell him so !

Needless to say ,

My GP was not amused by her diagnosis and scoffed saying ... She’s a Dermatologist !!!!

.....But reluctantly he requested the blood test, saying to me ... I don’t think there’s anything wrong with your Thyroid !

So ... when I WAS FINALLY diagnosed GRAVES DISEASE

I was delighted ...as I then knew what to do !

My GP told me not to worry that I would be given a pill to take ( RAI) And that would

“ burn out my Thyroid Gland “

Or

... if that didn’t work !

... Then Surgery !

That would remove my Thyroid Gland and leave me HYPO for life ....and I would then just take a pill every day and I’d be fine !

Well I won’t tell you what I WANTED to say to him at that point but !!!

I did say ... I will not destroy my Thyroid Gland ..

I was aware that my Thyroid Gland had worked well for my body all of my life ... and that if I had a Thyroid Disease it was most likely my Immune System that was going wonky .. NOT my Thyroid Gland !

...and so this to me was the important part ..

I visualised

What that may actually look like , in my head .

... I was going to feed my Immune System ... Simples !

So... my approach was to replace all that my Immune System had robbed my body of , whilst it was attacking my Thyroid Gland .

So I fed it with Vitamins , Minerals and Nutrients .. and I ate the Best that I could !

Vegetables

Fruit

Soups

I eat ...Good fats

Milk and Yogurt ( sorry)

Nuts and Seeds .. ( plenty)

Grains

Eggs

NOT A DIET ... just lovely fresh wholesome foods

..I’ve never eaten meat in my life ... but I have loads of protein .

After blood tests for Vitamins

I Take every day ...

Vitamin C

Vitamin E

Vitamin B12

Vitamin D3 with VitK2

Vitamin B1

“ B2

“ B6

“ B5

Acidophilus 40billion/day

Selenium

Zinc

Magnesium...

There are a few others ..but these above , are the vital ones that put my body back together and helped me build up my immune system again !

I found out all my info by researching everything I could find on the Subject .

And by listening carefully on here and one other site and putting together a plan..

THAT Plan worked !

And I cannot now believe how LOW I was !

I now have my life back again ..

and I never want to go back to that ‘ dark place ‘

That’s why I will continue with my ‘plan ‘

For always ............

It may cost money to buy these supplements and good food ... but it’s a lot better than the dire alternative , of full blown ... Graves Disease

I hope you may be able to try it for yourself and that it works for you too ..

Good luck and love

Mx🌹

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Madge I cannot believe how alike our symptoms were! Oh my word, when you say you couldn’t say words ! Me too. No eyebrows , me too. No arm muscle! Dry skin! Muscle pain!

I very rarely explain to anyone that doesn’t understand Graves’ disease as past experience tells me they think we are hypochondriac.

Thank you for the vitamin list and it’s strange but I have been having lots of lower leg pains recently and seeing you put k3 after d3 gave me a aha moment, I always knew that with high dose d3 one needs k3 also but have I been doing that ? No.. I will be from tomorrow.

I eat well and always fresh, clean simple food. I am not vegetarian but don’t eat much meat about once a month but dairy ! I can’t seem to give dairy up.

I Am now in the least stressful time as the past 8 years have been stressful so I’m hoping things will settle down and I too can enjoy life again.

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I firmly believe if all of those ‘ingredients ‘ are replaced then the Immune System becomes satisfied .. after being starved ....and leaves our Thyroids in peace ..

That was my thinking at the beginning and it has worked for me .. and others also... so I’m continuing with it .

My family .. at least the women in my family ...have been plagued with Thytoid disease

My Grandmother, Mother , Sisters , cousins, nieces all have had it . And I seem to be the one who has had any kind of luck with it .. so that is why I must keep going with my plan

Because some of them are very ill at the moment with years of medical neglect.

I wish you well...

Magnesium

D3

K2 mk7

It seems , all work together and so .... I take them that way

Best of Luck ..

Mx🌹

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Erin my GP insists on trying to keep me within “recommended guidelines”.As she says if not it will effect my heart. Any request for T3 test is a definite NO. I am dreading having to go back. I feel as if I am dealing with the enemy.

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I’m afraid you are dealing with the enemy, lazy GP’s that stay stuck in closed mind mentality and don’t educate themselves on the vital importance of conversion of T4 into T3. When the GP Says definitely not to a T3 blood test I would ask why is there such a thing as a T3 blood test if it is so irrelevant and als why there is T3 medication available and widely used throughout the world. I would also point out why 74% of endocrinologists within the NHS believe there is a vital need for T3 medication and have written to the governing bodies and NICE saying so and asking for it to be reinstated on prescription.

Maybe you could Change GP or ask for an appointment to see an endocrinologist for a second opinion.

It’s hard enough dealing with all the consequences of Graves’ disease physically and emotionally without having to go into constant battle with our GP’s. Viv you are within your rights to ask for a free T3 blood test, i now have a whole thyroid panel done including FT3 every 6 weeks to titrat carbimazole.

I had to become my own advocate and not allow them to fob me off.

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Thank you for all your advice. I feel that I will be much better prepared for my next appointment. The brain fog makes understanding it all myself difficult, without the stress of trying to get it across to a GP who has such a fixed mindset. I came away feeling dismissed as a waste of time from my last one.

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It’s shocking how we have to become extra assertive with our GP’s.

Viv consider writing down the points/facts/questions you need answers to, condense then as much as possible, stay on topic as through experience I have learnt with Graves’ disease we have such a jumble of thoughts simultaneously it’s hard to explain especially when we are placed under pressure and know how important it is to our health during a 10 minute appointment.

Ask for answers to eg;

1. Blood tests

2. Importance

3. Second opinion

4. Endo appointment , etc.

You may consider writing a letter to the GP stating how difficult it has been for you, in the areas (which I know are many) you have struggled (maybe including this battle with the dosing of your medication)

I would hand it to her after your appointment and ask for it to be read and filed on your records.

These are just some suggestions of the things I have tried that may or may not be of use for you to try viv.

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Thank you so much Erin60. It has helped speaking to you. Just knowing I’m not the only one (sadly) who is having this battle with my health has given me confidence to carry on.

I will post again when I have more info. x

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Hi Vivvyy, I have graves desease had RAI 9yrs ago and never felt completely well on levothyroxine and GP reduced my dose because my TSH was suppressed made me feel like I was dying I managed to get an increase in levo by taking the article by Dr Toft that slow dragon has mentioned in her post to the GP to read this maybe worth a try. I always needed my t4 at top of range and TSH suppressed to feel anywhere near normal. But you could need to be on t4/t3 combo therapy to be completely well so good idea to get blood test done to see if your converting t4 to t3 efficiencly also vitamins are very important to be in optimal range for meds to work correctly.i managed to get a referral to endo and now on T3/t4 combo and feeling so much better for it.wishing you well.

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Glad your feeling better.

Was the T3 prescribed on the NHS?

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Yes I was very lucky to get t3 prescribed by NHS, only been on it for a year and I do worry whether I will continue to get it prescribed.

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Hello Vivvyy

I am with Graves Disease, post RAI thyroid ablation 2005.

I started my learning curve on this amazing site some 2 years ago.

I see so many similarities in your post to where I was with my doctor. I was monitored on only a TSH reading and only ever on monotherapy with Levothyroxine 100 or 125 mcg. I was never " well " but thought maybe this was " as good as it gets " . ??

I am afraid you will have to read up and help yourself back to better health.

It is essential that you acquire blood tests for a full thyroid panel including the vitamins and minerals as detailed on this site, and then repost so that people more able than me can advise of your next step.

Your doctor may help you with above bloods, but I found no help, so ordered everything myself, from details on this website.

I had become so poorly I actually apologised to my doctor at appointment for my apparent " bumbling " and the fact that I needed to hold memory cards, and wasn't the verbose, bubbly, witty person I was once.

Graves is an autoimmune disease and as such it is for life, it's in your blood, you DNA. There is probably some genetic predisposition, maybe a generation away, and Graves can be triggered by a sudden shock to the system.

Your thyroid was the victim of an autoimmune attack from your antibodies, your thyroid was the victim in all this and not the cause.

It is somewhat simplistic to suggest that removing the thyroid solves the problem.

True Graves can be life threatening if not treated, but living without a fully functioning thyroid comes with it's own set of problems, on which the Nhs seem to be in denial.

As a point of reference a fully functioning thyroid gland would be drip feeding you, on a daily basis, approximately, 100 T4 and 10 T3. I simply don't understand why both these vital hormones are not replaced, on prescription, when there has been a medical intervention and the thyroid removed.

Some people do well on T4 only, some people simply stop converting the T4 to T3 and some people need both hormones in order to regain some level of well being.

You might like to read about Graves Disease :-

Elaine Moore's book Graves Disease A Practical Guide - this lady has the disease and went down the RAI route - it is very interesting -she also has established a Foundation for Graves patients in the States and there is a very comprehensive website and forum.

Barbara S Lougheed - Tired Thyroid - from hyper, to hypo, to healing - another American lady with this disease, debunking the TSH blood test monitoring for Graves patients.

My third goto book is all about your thyroid - we may now not have one, but it's now up to us to work twice as hard at compensating it :-

This doctor is hypothyroid, it's a good read, makes perfect sense, and relevant in so many ways :- Dr Barry Durrant Peatfield - Your Thyroid and How to Keep it Healthy.

It's a massive learning curve , but having just registered, you're obviously wanting to know more to help yourself back to better health.

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Thank you for your reply and all the useful info. I feel I have much to learn about this condition. When the brain just doesn’t take it all in it’s overwhelming. It’s upsetting that so many people are being ignored and left to suffer. Hope your keeping well now.

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Have just spotted your Post on Fibro Action :-( Hope you are OK ...

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Hi Marz. I’m ok thanks. Don’t know which way to turn. Feel I’m going round in circles. Got GP appointment 2 weeks time.Hope your keeping well.

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I am thinking your pain is linked to a low in range T3. I was diagnosed with Fibro in 2000 and with Hashimotos in 2005 here in Crete. Am now T3 only and slowly increasing my dose ... Are you able to have Private Testing done through Thyroid UK so you can be free of the Doc keeping you unwell. Lots of good advice above for you ... Do you think certain foods could increase your pain ? - it happens to me and others too ...

Hope you soon feel better ...

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Hi Marz

Going to give GP another go, just received access to my GP records. Going back over them I see my old GP always tested T3. So going to put that to my new Surgery. If no joy I will go down the Private route.

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Great idea. What were the results of your FT3 in the past ? - and range :-)

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2015...5.8[3.1-6.8]

2016...5.4[3.1-6.8]

2017...4.3[3.1-6.8]

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Your last FT3 result is lower - so possibly even lower now. As has been mentioned before do not lower your dose of T4 as it could make matters worse. Insist on testing FT3 if they insist on lowering your dose 😊

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My thyroxine was again reduced from 125 mcg daily to 100 daily in November 2018. No consultation just a phone call to say it had been changed.☹️

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Am sure you have read enough here where people have their meds reduced based on their TSH. T3 is the active hormone and when you are still in range then you do NOT need a reduction of Levo ...

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Understanding that now. Thank you

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We just wish Doctors did 😊 Sorry if I sounded bossy ... !

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