1 year post-total thyroidectomy: Hello, I'm new... - Thyroid UK

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1 year post-total thyroidectomy

lau99 profile image

Hello, I'm new to this forum, so apologies if I've gotten anything wrong.

To make a long story short, about a year ago I underwent a total thyroidectomy after having battled Grave's disease for much of my teens. Both my experience having an overactive thyroid and the 1 year post op have been painful; thinking about what i've gone through in the last few years makes me very tearful. Agreeing to have my thyroid totally removed is my biggest regret of my life. I'm 20 years old.

I am currently on 200mcg of Levothyroxine, and my bloods are all normal, but I still experience unexplained weight gain, very sluggish bowel, constant bloating to where I look pregnant and low mood. Of course, my eyes still protrude a lot from previously having Thyroid Eye Disease, which makes my self esteem even lower. Does anyone know what I'm doing wrong? Will I feel like this forever?

45 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, when on just levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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?

If in the UK

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

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

For thyroid including antibodies and vitamins

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

First step is to get thyroid and vitamins tested and get all to optimal levels ....this can significantly improve symptoms

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

Very important to always get Ft4 and Ft3 tested

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Many, many Graves patients also find strictly gluten free diet helps.

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying strictly gluten free diet for 3-6 months

If no noticeable improvement, reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

lau99 profile image
lau99 in reply to SlowDragon

Hi, thanks for all the info. I will make sure to look into some of the things you have listed.

My last blood test showed TSH 4.00mu/L, but i haven't had my T3 tested since before my thyroidectomy. I haven't had my T4 tested since November, but back then it was 19.7pmol/L while my TSH was 14.40mu/L. I hope this means anything at all.

SlowDragon profile image
SlowDragonAdministrator in reply to lau99

When were levels last tested?

Important to do tests as advised.

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

Many many people only get relief from hypothyroid symptoms when Ft3 is over 50% through range....in order to get Ft3 that high frequently dose of levothyroxine needs to be be right at top, or even just above top of range.....frequently that results is extremely low TSH (well under one)

A TSH of 4 suggests you are not correctly treated

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 “

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

First step is to get FULL thyroid and vitamin testing

lau99 profile image
lau99 in reply to SlowDragon

Thank you for such in-depth responses. I haven't felt so listend to in this journey before posting here. My latest TSH reading where I got 4 was at the end of January. I was told that was in the normal range, so I haven't been called back for a blood test since.

SlowDragon profile image
SlowDragonAdministrator in reply to lau99

If you are based in UK recommend you get FULL thyroid and vitamin testing via Medichecks Or Blue Horizon

Make sure to do blood tests as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Come back with new post once you get results

Presumably you know that Levothyroxine should always be taken empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients.

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Batty1 profile image
Batty1 in reply to lau99

Your only one year post op you should be testing TSH,T3,FT4,FT3 every 3 months.... You need to start defending yourself (If you don't) with doctors or they will destroy your health if you don't.....If you feel awful speak up often and loudly.

TSH of 4 is absolutely horrible .....get a new Doctor ASAP

lau99 profile image
lau99 in reply to Batty1

I see...I was told that once my bloods looked 'normal' to only come back once a year or if there's another unrelated problem. The patients at my GP aren't allowed to independently ask for blood tests, the GP has to ask on your behalf (not sure if it's the same everywhere). I tried to tell a GP yesterday that something wasn't right over the phone, but he basically shoo'ed me away and seemed annoyed that i was wasting his time. I will try to be more adamant in future.

pennyannie profile image
pennyannie in reply to lau99

I think a different surgery might be worth a thought -

He went on the defensive with you, as he isn't prepared to support you which possibly means going against the current guidelines he's paid to follow -

You shouldn't need to be anything other than the person you are - I've tried being more assertive, but you need to be true to yourself.

Batty1 profile image
Batty1 in reply to lau99

Normal is a term used by those that have no idea what it’s like to lose your thyroid and hormones overnight and Doctors are no exception and these doctors also prescribe to the theory that if your TSH is in range your fine .... your TSH is (4) and your not feeling right so this means your not fine. Your going from hyper to hypo.... that’s brutal battle.

Maybe it’s time you pay for your own blood test like the majority of people here do, which is absolutely appalling that in 2020 people with thyroid disease still can’t get properly tested, medicated or diagnosed and are forced to self medicate and test on their own.

Anyway I get upset that doctors think living without a thyroid is simply take a pill and see you next year..... yes at some point you will need to move forward in life and not be stuck in the endless rut of health issues but right now your battling for normalcy after thyroidectomy and you have a long way to go.

After my 3 yr battle with many Endos I realized thyroidectomy patients are throw aways once they reach these magical lab numbers.... My numbers were never magical and I never let the Endo convince me they were...: find a new doctor!

Batty1 profile image
Batty1 in reply to lau99

I lost my thyroid 3 yrs ago....what a mess this has made of my health but I'm a firm believer that people without a thyroid need both T4 and T3 medications (you no longer make hormones).

Like Slowdragon says, if you post results of blood tests we can give more help. Living without a thyroid is not easy to adjust to because it affects all our cells but the point of replacement hormone levothyroxine is to become symptom free. You need to learn a new way to care for your health and it can take a couple of years to make all the adjustments and then you ha e to stick to them and work at it but you can feel well again.

The things I've found most helpful are, getting all vitamins optimal and monitoring them regularly to keep them optimal. Making sure I get enough minerals such as magnesium zinc and selenium in my diet and I now use a skin spray magnesium supplement. Changing to a low carb, gluten free diet. Increasing exercise like yoga and pilates and I now do some light jogging but it took a while to feel well enough. Meditation to help relaxation and prevent anxiety. Organic full fat grass fed dairy products in combination with low carb diet to support good bone health. I know there are differences of opinion but its worked for me as bones have improved.

Try not to regret your de ision. It's possible you would have had no choice in the end. Embrace your decision as the choice you made to allow yourself to move on. Now, tell yourself not to look to the past but move forwards. Make one step toward moving forwards today. That could be simply telling yourself this is the first day of your new life.

Your eye problems may not vanish. Others can give better advice but if you have Graves antibodies they do not vanish with thyroidectomy. However, the plus side is you won't have to worry about neutopenia and much less likely to suffer from low bone density now so you've got lots in your favour including youth.

lau99 profile image
lau99 in reply to Nanaedake

Thank you for the advice and the kind words. I will definitely look into all that you have spoken about regarding lifestyle changes.

As Slow Dragon says, you and we need to see blood tests first in order to know what is happening in terms of conversion of your Levothyroxine. My view, having also had a Thyroidectomy, 2006, is that you will most probably need to take Liothyronine, T3, to get back to where you were before Graves took over your life. You will still take Levothyroxine, your T4 but will need a reduced dose to allow the addition of T3. Unfortunately, across the entire world, thyroidectomy patients are woefully treated. We just have to do the best we can and fight our corner to be either given T3 or buy it ourselves. Not sure where you are but if in UK, it is now very difficult to get the NHS to prescribe it.

When you have all the test results, post here for more advice. I feel for you to be going through this at such a young age. You will get better but it will not happen overnight, so be strong and ask questions, act on the answers and slowly things will improve.

lau99 profile image
lau99 in reply to Hennerton

Thank you for the response, I really, really appreciate it, having not been seen by an endocrinologist since about 10 months ago. I am also in the UK, and have heard about how difficult it would be to get Liothyronine prescribed. Is there any possibility at all that I could be a candidate for it? I don't know if I'm allowed to go on a higher dosage of Levothyroxine than 200mcg.

pennyannie profile image
pennyannie in reply to lau99

It's not a question of being allowed a higher dose of Levothyroxine - the question your doctor should be asking himself is why this relatively high dose isn't working for you ?

His first action should be to retest your TSH, T3 and T4 to check that the Levothyroxine is working and converting into T3.

At the same time he should check out the vitamins and minerals that assist the conversion of T4 to T3, namely ferritin, folate, B12 and vitamin D.

Lastly if he can't solve the issue he should refer you to an endocrinologist who may consider you a suitable candidate for a T3 prescription.

Depending upon where you live in the country, and what CCG you come under, this can be problematic, with many people on this site forced into self medicating.

lau99 profile image
lau99 in reply to pennyannie

Sadly it would seem that by currently having TSH at 4.00, I'm just within the arbitrary 'normal' range by 0.2, so I haven't been called back for another blood test since January. My old endocrinologist told me there was nothing wrong with me, so I was discharged from the endocrinology unit the same day as my post-op assessment, even though I was on very low Levothyroxine and still hypothyroid at the time. This was 10 months ago, and my old endocrinologist has since emailed my GP to say that my problems were probably just because I wasn't taking my medication (completely untrue). I have booked a phone consultation with a GP today to ask if i can be referred to another endocrinologist...

I am mostly based in the South West; do you by any chance know if I might have any luck getting on T3 here? I know that's a bit of a long shot though

pennyannie profile image
pennyannie in reply to lau99

Hey there, I'm in Cornwall and it's difficult, I was refused but that doesn't mean you will be.

We hear of those excuses a lot, " not taking the medication " it's simply unacceptable, isn't it.

Thyroid uk hold a list of " friendly endocrinologists " email, Donna for the list as these endo's will be understanding of your situation :

Be aware Graves patients still have the TSI/TRab antibodies in their blood so this actually makes the TSH blood test a very unreliable measure of anything for them:

The TSH was designed as a diagnostic tool to help identify hypothyroidism :

Once on thyroid hormone replacement it is the T3 and T4 that tell us what' s going on : and once on the right level of thyroid hormone replacement most people find their TSH is down at around 1 or even low/suppressed : The TSH is not a reliable gauge of anything and should not be used in isolation for any thyroid AI condition.

Nanaedake profile image
Nanaedake in reply to lau99

TSH of 4 is not normal for someone taking levothyroxine. It might be normal for someone with a thyroid. Generally people need a lower TSH when on meds, around 1.0. However, there could be somwthing else going on as you're taking 200mcg of levo which is a lot. I've lost most of my thyroid, I'm tall and overweight and take 120mcg of levo.

What type of levothyroxine e are you taking? Many people on this forum have said they don't get on with TEVA.

Then, you may have an absorption problem due to another autoimmune condition not yet identified.

I'm afraid I think it's upsetting and unhelpful that the Endo told GP your problems were due to non compliance with your meds. This is very common for us thyroid patients.

I would return to the GP and state categorically that you do NOT miss your tablets and the Endo is wrong. Tell the doc that 200mcg is a large dose of levo a d clearly you are not absorping it properly so you need further investigation to find out what's wrong.

Some of the things you might be tested for are low vitamins, pernicious anemia, coeliac disease and other gut problems. Don't make changes to your diet until you've been thoroughly checked out as if testing for coeliac disease you need to keep eating gluten.

It's going to be tricky due to the current situation but you deserve better care than you've been getting.

lau99 profile image
lau99 in reply to Nanaedake

I see...things are starting to make a lot more sense for me, in that case; I might not be crazy or a hypochondriac after all. I take the generic Levothyroxine from the Almus(?) brand, and I am quite small at around 5'2. I have been petite all my life, with my weight before thyroidectomy being around 43-45kg.

Curiously, my old endocrinologist suggested malabsorption but chalked it up to me not taking my medicine in the same email...I left the appointment feeling crushed and tearful. Thankfully I have tested negative for coeliac disease, but this bloating doesn't go away at any point during the day. I take my medicine first thing in the morning and don't eat until an hour later, though I used to take it last thing before bed per suggestion of my GP when taking it in the morning didn't work for the first 6 months of treatment (My last meal is generally eaten at around 7 and I go to bed around 11). I switched back to the morning because I thought it might absorb better on an empty stomach, but no luck.

Nanaedake profile image
Nanaedake in reply to lau99

It's good your GP has ruled out coeliac disease, however, you could still be gluten or wheat intolerant so it could still be worth cutting out gluten for 6 months to see if it helps. It has to be total to make a difference. So the next thing is to get vitamins tested, B12, vitamin D, folate and ferritin then post results here and we will tell you if they need improving. GP will say they are fine if anywhere in NHS range but that might not be optimal for someone without a thyroid and with gut disfunction.

And, no, you're not a hypochondriac. Lots of us have had same problems as you. Low stomach acid can be a problem for people missing a thyroid. Increasing fermented foods in your diet may relieve the problem. You can find foods like Kimchi and natto beans in Asian supermarket or make your own fermented sauerkraut. Dont buy supermarket sauerkraut as it probably won't be naturally fermented. Kefir is also good.

Doctors don't study nutrition and seldom understand the thyroid gut connection. You will likely be prescribed a PPI like omeprosol which will make the problem worse not better.

Almus is a reliable levothyroxine and is Actavis levothyroxine packaged in the Almus packaging so I doubt that is the root of your problems.

Get your vitamin levels tested as next step. That will help you rule out deficiencies and pernicious anaemia. Then work on stomach health. You also need thyroid levels retesting and try to get your TSH to around 1 to see if that helps too.

Although taking T3 along with T4 helps some people, it will be difficult to sort out currently. I only take levothyroxine (or T4) and I'm well. So it's possible that if you get everything else sorted your body will manage with just T4.

If not, then you could look into other options when the world has gone back to normal.

SlowDragon profile image
SlowDragonAdministrator

Post discussing importance of Improving nutrients to improve conversion

healthunlocked.com/thyroidu...

Hello Lau

You haven't done anything wrong and you are right to come on this website as you will get help and support with your thyroid health issues.

I too have Graves Disease but I was given RAI in 2005 and deeply regret that, but we are where we are, and thanks to this amazing forum, I've been able to turn things around for myself, and you too can do this.

There's a lot to read and reread and understand and you will learn a lot simply by reading other peoples questions and the answers that they receive.

Graves is an autoimmune disease and as such it's for life, it is in your DNA and your blood.

Your thyroid was the victim in all this and not the cause, as the cause is your own immune system attacking your body.

The thyroid is a major gland responsible for full body synchronisation, and the controller of your emotional, physical, mental, psychological and spiritual wellbeing and your engine, and the controller of your inner central heating system and your metabolism.

So, when Graves attacks your thyroid the symptoms experienced can be diverse, some simply a little odd, whilst others can be considered life threatening.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. T4 is the storage hormone Levothyroxine and this needs to be converted by your body into T3 which is the active hormone that the body runs on, and I read most people need about 50 T3 a day just to function.

Your ability to convert the T4 into T3 can be compromised if your vitamins and minerals are not optimal, so it is essential that ferritin, folate, B12 and vitamin D are maintained at good strong levels and not just somewhere in the NHS range.

Personally I just think if there has been a medical intervention and the thyroid surgically removed or ablated with RAI, as in my case, both T3 and T4 should be on the patient's prescription for if, and probably when they will both be needed for good health.

Some people can get by on T4 alone, some people at some point in time simply stop converting the T4 into T3 and some people simply need both these essential thyroid hormones dosed and monitored independently to bring both thyroid hormones into balance and to a lhigh enough level acceptable to the patient.

As you will see from the above you have " lost " that initial little bit of T3 that your own thyroid gland supported you with, but that little bit equates to about 20% of your overall wellbeing and it is known and acknowledged that some people without a fully functioning working thyroid require both T3 and T4 thyroid hormone replacement.

If you don't know of Elaine Moore you might like to take a look at her website. She has Graves Disease and being a medical researcher has now developed and runs a well respected website on all things Graves for any patient, world wide to use. There is an open forum much like this fantastic forum, where community members help each other and Elaine takes an active role in answering people's questions.

First and foremost you are not alone with all this, and once with the blood test results as previously detailed start a new post with the results and ranges and people better able than me will talk you through everything to help you reclaim your health.

lau99 profile image
lau99 in reply to pennyannie

Thank you so much for this response. I've felt so alone throughout all of this. Really, thank you. I was at a point where my thyroid was becoming resistant to treatment with Carbimazole and i began losing what little weight I had, so my only options were to have RAI or surgery. I didn't want to risk becoming hyperthyroid again so I opted for surgery. May I ask how your experience with RAI was? I don't mean to be intrusive, don't worry if it's too personal. I feel a bit better after learning here that there is still some work to be done for me, and that my levels are still not quite right. I hope I'm able to find a doctor who will listen to me.

pennyannie profile image
pennyannie in reply to lau99

Hey there, no worries, if you check out my profile that says much of my story and maybe also look at answers I've given to other people if you like.

It's easier than going through it all on here again, as I've a tendency to sound like a broken record !!!

Please ask anything, there's a multitude of knowledgeable people on here, most, if not all of them, having gone through similar issues with their thyroid hormone replacement treatment.

P.S. Press on the person's icon next to their name and that takes you to their profile page, and it also offers up all their questions and logs all the questions they have answered.

lau99 profile image
lau99 in reply to pennyannie

Your story seems to have been an arduous one...I'm in awe that you've managed to come out the other side of it. Your determination to get better is so inspiring, it must have been difficult for you, but I'm glad to hear that you're doing better.

pennyannie profile image
pennyannie in reply to lau99

It was all the things you might imagine and more, but I think, overall, anger was the overriding issue as I wanted to prove that I did know what I was talking about, and to be dismissed, as I was, is simply totally unacceptable, but at the time, I was too ill to fight for myself.

Doctor's do not necessarily know best and I resent being treated like a nuisance and given anti depressants rather than be monitored, managed and treated effectively for the thyroid autoimmune disease and treatment I was dealing with.

I am indebted, in the most part, to this amazing website and that is why I'm still here, trying to help others, like so many other people who give tirelessly and freely of their time, as most of us, were there once.

So sorry to hear your story. You have received some good advice here from others.

I just wanted to say I too had Graves and after battling for several years off and on with carbimazole I decided to go with RAI. Like you I have regretted it but it is easy to forget how difficult it was when we had Graves. I try now to look forward. I was also signed off by my Endo after RAI but at my last appointment I remember him saying that my TSH would probably need to be suppressed for me to feel well. I think this is common with Graves patients who have had RAI/thyroidectomy.

Unfortunately GPS do not like suppressed TSH. One GP reduced my dose to get my TSH in range and I got bloating, joint pain, weight gain. The bloating seemed to be due to water retention all over. I then decided to get my bloods done privately as suggested to you. Getting your T4 and T3 tested will really give you an idea of what is going on. In my case even when I increased my T4 to suppress my TSH again I still did not have enough T3. I live in Somerset and was told by my GP that our PCC would not fund T3. She writes me a private prescription which I use to get T3 from Germany however this may not be possible going forward with Brexit/COVID possibly affecting things. I suspect things are going to get harder for those of us who try to self medicate. I would suggest once you have your blood results looking at the list of Endos given on this forum to see if there is one in the south west you can see. As others have said said your thyroxine seems to be high for your TSH so it may well need further investigation. (I had 100mcg T4 with a TSH of 0.02 even before I added T3)

You have had a lot to deal with at a young age, I hope it helps to know you are not alone in this. Take care.

lau99 profile image
lau99 in reply to R2d2c3po

Thank you for sharing your experience, and for the kind words, too. I really appreciate it. You're definitely right that I sometimes forget how bad it was to be hyperthyroid...I hope you're doing better now. I will definitely look into other treatment options that you have listed. It is relieving to know that someone else experienced the same symptoms as me. May I ask if your bloating ever got better?

R2d2c3po profile image
R2d2c3po in reply to lau99

Yes my bloating went once I increased my thyroxine dose. I am fortunate in my village surgery to have a GP who is sympathetic and when she saw my private blood tests agreed to increase my dose of T4 and then to give me a private prescription for T3 to help further. I now am back to 90% of my pre-Graves self. Getting the private blood results was key to my recovery. Good luck

I echo what the others have said. Read read read, not easy when you don't feel well. My thyroid was removed and I went from sports woman to 6 stone over weight, chronic pain, fatigue, crying and anxious all the time. My gp assumed that my thyroid was the problem and now it had been removed, job done.

I lost 5 years of my life and nearly died. I decided to start healing myself. My drs were worse than useless and I realised this is a self help illness, you have to do it yourself, the Dr's are just hopeless. Mine just fobbed me off with unlimited ever stronger pain killers tramadol and dyhydracodine , anti depressants, mebeverine and lopermide for chronic IBS, anti acid tablets, vallium and beta blockers as my anxiety and panic attacks were off the charts. HRT, Amyltriptelene for nerve pain,

I couldn't stay awake more than an hour I kept saying I hadn't been well since thyroid removed but he never considered that was the problem he said it was my age, meno pause, depression etc.

Don't wait for the Dr's to get you well you will just get upset and angry (like me) I read for months, I looked for similarities between others experience and mine and I tried what worked for them.

It is all trial and error. Keep a daily journal (food mood meds supplements exercise ) it helped me identify what triggered me, if I over do things ( Google spoons theory) I pay for it. For me there was no quick fix, I'm a long way from the super fit person I was but I'm a million times better than I was 5 years ago. Xx

Hello

I don’t think you are doing anything wrong at all. I think you sound as if you need more support from your GP and consultant and a review of your medication etc. There are other people here who I am sure can advise and support you better than I in improving your health. However, understand the anger and regret as I’ve experienced this myself from having Graves and it takes a while to come to terms with it all. You will get lots of support from people here and you are definitely not alone so don’t be afraid to ask for help.

Please check out the Elaine Moore Graves Disease website :

There is also a book which I believe you can download :-

Barry Durrant-Peatfield is a doctor who has hypothyroidism and his knowledge on thyroid makes a lot of sense and where, along with Elaine Moore and this amazing site I started my own way back to better health.

His book - Your Thyroid and How To Keep It Healthy is full of information we need to know as living without this amazing little gland we now need to try and compensate for it's loss.

lau99 profile image
lau99 in reply to Stanleydoggy

Thank you, Stanley (hope it's alright to call you that!) the support alone is enough to make me feel better. It's nearly a year to the day since I had my surgery, so it's hard not to think so much about it at the moment...I'm glad to have found this forum though, every one has been so nice to me.

Hi lau,I like you were very young when I had my thyroidectomy although mine was a partial.i remember it took a long time for me to feel anywhere remotely normal.i had lost a lot of weight being overactive for almost 2 years and not knowing what was wrong with me,i was treated for everything even conjunctivitis.it was a friend of my boyfriend now my husband who was an ophthalmic nurse saw my protruding eye and asked me to go to the ward where a dr recognised my problem and he got the ball started.

Trust me my love you are not alone we in the thyroid club we all suffer the same problem,my 35 year old suffers too.she was diagnosed when she was in her early 20s also underactive.

For me now I’m in my 60s I no longer worry about my weight I try to eat as healthy as possible and potter in my garden.my daughter looks at it from a different angle.she says she can’t change anything so she runs,she goes to the gym whenever she can her and hubby eat very healthy but it’s also ok to have a little treat at the weekend such as a couple (and only a couple)glasses of wine or chocolate.i think she’s trying not to fixate in something she cannot change so by not worrying about it the weight issue is not in control of her she’s in control of it.hope this makes sense.take care,Helen x

lau99 profile image
lau99 in reply to Bilpol

Thank you for this insight. it's very promising to know that I still have a happy life to look forward to, in spite of my ill health at the moment. I nearly had to drop out of my dream university last year, and this whole journey has been a lot of tears...I feel better having the support of this forum. I hope you continue to stay well x

Bilpol profile image
Bilpol in reply to lau99

You are very welcome sweetheart,when you’re having a bad day and there will be bad ones,remember it’s only a bad day not a bad life xx

Hi Lau

I have read all these posts and really feel for you and others who have had similar experiences. Thank you for sharing all this. It is really really useful to hear.

I have Graves Disease and reasonably mild TED (thyroid eye disease). I have been treated with Carbimazole for the last 18 months at varying strengths. Over the course of the 18th months I have gone from 5 mg/10mg/40mg/10mg/15mg . Currently taking 20mg per day. My levels go up and down but are not wildly out at the moment - the latest test was T3 6.5, T4 20.8, TSH 0.02, but my endocrinologist is now talking about surgery or Radioactive Iodine Therapy (which is limited because of TED) because he says the graves disease is not going to go away. I really don't want to go down these route and reading all of the experiences that everyone has had, I am even more reluctant to agree. When I try to talk about diet and gluten and gut the medics just don't want to know. I have been trying to be gluten-free (with a few lapses), and getting help from a herbalist and taking vit supplements and herbal tincture. I am sure this helps. I have a very active life (am in my 60's - shhh don't tell anyone!) and am not prepared to go through all the issues you have all experienced with doctors. I have stuff to do! I don't know if there are health issues to staying on Carbimazole long term - does anyone out there know? Thank you all.

Hey there WestBurrafirth

Please check out the Elaine Moore Graves Disease Foundation website :

You should not be considered for RAI if you have any eye issues as this treatment is known to cause, and, or exacerbate existing symptoms.

Please check out the 2017 article written by Professor Toft which is on here somewhere I'm sorry I don't understand the cut and paste thing entitled :- Thyroid Hormone Treatment - A Counterblast To Guidelines.

This article was his parting advice as he retired from the NHS the following year - the whole article sums up precisely where we all are, one way or another, but in particular look at Page 3 a third of the way down where he states :-

' I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves's Disease irrespective of age or number of recurrences of hyperthyroidism. '

Thereby suggesting long term treatment with AT drugs as being the better option for the patient.

RAI is the NHS treatment of choice as it is the cheapest most cost effective option, a 20 minute appointment in the basement nuclear medicine department and a discharge back out into primary care as soon as possible, freeing up the outpatient waiting times.

It is a slow burn that is also taken up by other glands and organs within your body, it can trash your immune system, as well as your vitamins and minerals.

Surgery is cleaner and more concise, but more expensive.

Long term treatment, and monitoring by an endocrinologist costs more time and money.

Graves is an autoimmune disease that attacks the thyroid - thyroid is the victim in all this, not the cause which is your own immune system attacking your body.

Graves is a poorly understood and badly treated AI disease and yes the options to either drink a toxic substance or have your throat slit open, not appealing, and it doesn't solve anything, and just compounds the problem in many cases.

P.S. I fully understand some people can't tolerate the AT drugs and their symptoms such that to loose their thyroid is a relief, but if you are ok on the AT drugs, with maybe a little tweeking and self knowledge, please stay put.

Thank you for you advice pennyannie. I am not intending to allow them anywhere near me with either a knife or anything toxic if I can help it! And I have written and told them this. I've just made a google search and found the article written by Professor Toft so will read this later. Best wishes.

lau99 profile image
lau99 in reply to WestBurrafirth

Hello, thank you so much for your response. I really, truly wish you the best with your journey with Grave's, you seem to already be handling it much better than I did :) if Carbimazole continues to work for you, then by all means continue using it! I have heard less than ideal things about RAI, and i essentially had to choose between that and surgery last year, as my thyroid was becoming resistant to Carbimazole and I would relapse into Hyperthyroid every time we thought it was safe to lower the dose. I went into remission I think 3 times(?) over the course of 3 years, although unsuccessfully. I had eventually gone up to 50mg of Carbimazole, but the side effects became too much for me to bear. I wish I'd had the wisdom to check a forum like this back then! All the best x

After testing your vitamins and minerals why dont you try a different brand of Levo. I’ve found that I couldn’t take Actavis/Almus/Northstar- they gave me a constant headache, severe bloating, stomach ache and constipation. Mercury Pharma weren’t much better so I have settled on Wockhardt and although they only come in 25 mcg, I throw them all into my mouth at once and they are easy to swallow.

lau99 profile image
lau99 in reply to Gingernut44

Thank you for this advice! You and I seem to have nearly identical symptoms then, maybe once things have gone back to normal a little bit I'll ask my pharmacist if I could try a different brand. thank you again :)

Gingernut44 profile image
Gingernut44 in reply to lau99

You’re welcome

Before TSH testing. TT patients were prescribed 200 / 400 mcg per day of thyroxine. The 200 end isn’t enough for many patients. Also, I don’t know if you have heard of the late Dr Gordon Skinner, a virologist who had a special interest in Thyroid disease. He found that most of his TT patients did best on natural desiccated thyroid supplements.

I am sorry that you are going through this and completely understand as I don’t have thyroid either. I would strongly recommend to switch to tyrosint, which is Swiss new generation hormone with fewer ingredients and is much much better absorbed than Levo. I used Levo and wasn’t working well for me so my doctor recommended this new one and literally within 2 days of slightly increased dose my tsh went down from 27 to 14. I don’t know if they prescribe it in the UK but I lived in Greece and now on the USA and is available. This is so much more superior version and I don’t need to supplement with t3, I also think that we will never be able to feel completely the same as we take same dose every day and of course our needs change depending on the day or circumstances. But try this one it really could help. Good luck

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