I am overweight and constantly on a diet and developed some symptoms I went to see my doctor as I thought maybe I had Hypo. After scans and blood test I have been diagnosed with Hyper and Graves (put on thyroid tablets and beta blockers) I also have early signs of TED, I have to see a consultant next week about my eyes and then back to the thyroid doctor on 10th Oct to schedule RAI.
The problem is I live in Portugal at the moment due to work assignment and I so I am trying to help myself as best I can, but google is just so confusing.
My Endo said there are no foods to avoid at all and not to believe what I read on the internet, which I can understand as one site says no dairy or gluten and another says lots of dairy.
Anyway I am waffling, my question is what is the best diet to be on while tackling this disease, one that will help me lose weight.
Thank yu for any advice.
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shellfyd05
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As a general rule there are no foods to avoid - except soy, which everyone should avoid, and I don't count that as food, anyway. However, some people feel better if they avoid gluten, and others feel better if they avoid dairy. It's a very personal thing. And we all have to find the way of eating that is best for us as an individual. There is no 'best' diet per se. Just what suits you personally.
With Graves' disease it's more usual to loose weight
What exactly have you been prescribed and what were most recent blood test results BEFORE starting treatment and since
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto's (and Graves) . Also important to test vitamin D, folate, ferritin and B12
Has GP actually tested TSI or TRab antibodies to confirm Graves' disease?
Private testing for suspected Graves - TSI or TRab antibodies
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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
If TPO or TG antibodies are high this is usually Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Can also be raised with Graves' disease
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's or Graves
Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once . Plus TSI or TRab antibodies tested if Graves is suspected
Wow thank you, wasn't expecting so much information.
With Graves' disease it's more usual to loose weight
Yes so I have found from google, I though I may have had hypo as couldn't lose weight even with being really strict with diet, walking for over an hour a day with the dog, had no energy, was losing a lot of hair, had muscle pain, just to name a few and just felt totally rubbish, hence my visit to the doctor.
What exactly have you been prescribed and what were most recent blood test results BEFORE starting treatment and since
I had a scan on my thyroid which showed it was enlarged so was told to see an Endo
My results before I started the treatment were:
22nd Aug
TSH 0.01 mU/L val ref (0.55-4.78) previous test in Dec 2018 was 1.54
FT4 23.1 pmol/L val ref (11.5-22.7)
FT3 6.6 pmol/L val ref (3.5-6.5)
TPO 462 Ul/mL val ref (<60)
TG 38.3 Ul/mL val ref (<60)
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto's (and Graves) .
Has GP actually tested TSI or TRab antibodies to confirm Graves' disease?
Yes the results of TRab are:
7th Sep
TSH 0.01 mU/L val ref (0.55-4.78)
FT4 21.5 pmol/L val ref (11.5-22.7)
TRab 4.10 U/L val ref (<1.75)
Have not had test for theses...Also important to test vitamin D, folate, ferritin and B12
Private testing for suspected Graves - TSI or TRab antibodies
medichecks.com/thyroid-func...
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
All my test were done while fasting as they did not tell me either way so I thought it best to fast.
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
If TPO or TG antibodies are high this is usually Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Can also be raised with Graves' disease
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's or Graves
Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once . Plus TSI or TRab antibodies tested if Graves is suspected
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
Would be difficult to be gluten free in Portugal
I do follow low gluten as I always thought I may have issues with gluten although never tested positive in the past.
Have you done much research into your health problems? Excuse me for interfering, but your diet is far less important right now than the fact that you have Graves' Disease and TED.
RAI is not recommended in people with TED because it can make TED a lot worse.
Doctors use RAI in people with Graves' for different reasons. There doesn't seem to be any consensus as to the purpose of the treatment.
1) Is the aim to make you euthyroid (i.e. having a thyroid which produces "normal" amounts of thyroid hormones)? If you are given too low a dose of RAI then the treatment may need to be repeated.
2) Is the aim to make you hypothyroid in the hope of preventing the hyperthyroidism from returning?
3) Is the aim to kill off your thyroid altogether i.e. is the doctor trying to "mimic" the result of a thyroidectomy but without surgery?
As far as I'm aware, doctors don't have any way of knowing how to dose RAI other than from experience. They can't be sure that they will achieve what they hoped for. And you, as the patient, need to know what the doctor is trying to achieve - because if they manage to achieve what they wanted it will have different effects on the rest of your life.
There is a big difference between being euthyroid, mildly hypothyroid, moderately hypothyroid, or having a completely dead thyroid. If you live in the UK then treatment of hypothyroidism is poor. Patients are often inadequately dosed, and there is no choice in treatment - it is Levothyroxine only. T3 has been effectively banned here, and most doctors have never heard of NDT, nor is it licensed. Similar problems occur in other countries. In France, for example, NDT has been banned.
TED occurs mostly in people with Graves' Disease but can also occur in people with Hashimoto's Thyroiditis. It is important to know for certain which you have, and to be sure that all the appropriate tests have been done and interpreted correctly. Having your thyroid destroyed or removed because of a misinterpretation of blood test results would be soul-destroying. Do you have copies of your blood test results? If you haven't you should ask for copies - and don't lose them. You could post the results n a new thread here.
Patients are often pushed into treatment very quickly when they have Graves and TED. This might be convenient for the doctors but isn't necessarily in the patient's best interest. It depends on how severe their symptoms are.
There are three different treatments for Graves' Disease :
1) Anti-thyroid drugs like carbimazole or PTU. If they suited you then you could stay on them long term. If you are lucky your hyperthyroidism may go into remission and you can keep your thyroid.
2) RAI - as I said, this can make TED worse. And the resulting hypothyroidism isn't an easy option for the patient either. It's just an easy option for the doctor treating you for hyperthyroidism.
3) Thyroidectomy - any surgery is potentially dangerous, and the neck is a complicated area to operate on. You would have to be confident that your surgeon was experienced and had a low complication rate. You don't want to end up with a damaged voice or missing parathyroid glands, for example.
I don't generally like Wiki as a source, although this particular page seems to be better than many of them. You can always read the listed references as a starting point for your research.
On the subject of TED, apparently selenium supplements help. Do you take them?
...
Elaine Moore is a sufferer of Graves' Disease and her website is full of useful information.
Well, towards the end of my block and replace treatment in 2013 I was constantly told that should I relapse I would be offered RAI - no way did I want that! I kept well on carbimazole and levothyroxine so I looked for as much evidence as I could find of people staying on it long term.
Then I made an appointment with my GP to see what the position was - could I be forced to have RAI? No. Could the hospital refuse to treat me if I refused RAI? Again I was told No. so I went home and relaxed - I felt the stress of worrying about that would do me no good. Stress and Graves isn’t a good thing.
I cleaned up my diet, ate lots of fish, chicken, a bit of lamb and the odd steak along with healthy vegetables, mostly ones that grow above ground as they have less sugar in them, I eat more vegetables than fruit plus nuts and seeds.
I had by that time given up my McDonalds habit as I wasn’t walking enough to walk off all the calories. So I cut out junk food and fizzy drinks. My own belief is that sugar in any firm isn’t good, I don’t take much dairy produce but I am not on a dairy free diet - I just don’t like milk or the texture of yoghurt even though I’d love to like yoghurt.
I exercise - I walk a lot, like gardening, cycle sometimes and do Pilates. Active but nothing ridiculously energetic.
I developed yet another autoimmune condition five years ago so I went totally gluten free. In the mean time I was using home finger prick blood tests because not only did my hospital want to give me RAI - I had never had my T3 tested and the never tested B12, vitamin D, folate or ferritin all of which we know need to be well up in their ranges to help our thyroids. So I decided to do my own.
I also developed T2 diabetes as a result of taking steroids for the inflammatory arthritis so I went on a low carb, high fat diet and ate my way out of that by regularly testing my blood sugar and eliminating everything I found to spike my blood sugar.
Unfortunately this summer in France I saw a beautiful looking baguette jambon beurre - hadn’t eaten non GF bread in five years - and persuaded my other half that he would want one so that I could eat an end - needless to say after I had a bit I decided I’d have one of my own, then a croissant and another jam on beurre.
I have gone back onto strictly gluten free but I have just taken delivery of a Medichecks home finger prick test and I will be very interested to see what effect all that had in my thyroid antibodies.
With TED you definitely don’t want to have RAI. If your eyes are a problem, mine were incredible dry and I used to get blurred vision if I read for too long and a weird vertical double vision so I used loads of dry eye drops to keep my eyes lubricated - I used additive free drops such as HyaBak or HycoSan although at the moment in the advice of my rheumatologist - he has recommended them two years running and this year I though ‘ I can’t sit there without having given them a try. I’m using a really cheap one called Sno Tears which is not additive free and much to my amazement they seem to be working well - for the time being at least. I’ve also just started to add in a really thick gunky one for night time VitA Pos which seems to be ok too. So keep your poor eyes moist.
Also my pharmacist recommended taking 1000 mcg vitamin c along with my carbimazole so I always took 1000 mcg slow release vit C plus zinc. I would definitely do that if you don’t do it already. I kept my vit D and B12 well topped up, my folates were fine and my ferritin is too high so I didn’t need to do anything about that.
I always kept a notebook with a record of all my blood test results along with how I felt at each stage of my treatment and any interesting articles I found about the treatment of Graves - and in my case people who had been on carbimazole / block and replace treatment in the long term.
I also read as much as I could about Graves, I think it is important to take an active part in your treatment - don’t just let the doctors ‘do it to you’. It’s your body.
TSH 0.01 mU/L val ref (0.55-4.78) previous test in Dec 2018 was 1.54
FT4 23.1 pmol/L val ref (11.5-22.7)
FT3 6.6 pmol/L val ref (3.5-6.5)
TPO 462 Ul/mL val ref (<60)
TG 38.3 Ul/mL val ref (<60)
Your results above do NOT show signs of hyperthyroidism. They suggest that you have Hashimoto's Thyroiditis (Hashi's) rather than Graves' Disease, although some Graves' antibodies can also occur in Hashi's.
In Hashi's, people often go through a period of having mildly "hyper" results - although yours don't really justify that term they are barely above the reference range. If you were to do the same tests today or next week or next month then the chances are that you would have results for Free T4 and Free T3 which are back in range or possibly even low in range. Eventually people with Hashi's become hypothyroid by themselves without any treatment.
Your results are NOT justification for having your thyroid killed off! I am so angry on your behalf that a doctor said you need your thyroid blasted with radioactive iodine when your results are only a smidgen above the range for Free T4 and Free T3.
The other problem you have, as I mentioned in my earlier reply, is that RAI exacerbates TED. Don't agree to have RAI!
You should read posts by greygoose who often discusses Hashi's.
The TSH on its own doesn't show hyper. To be hyper, you need to have your FT4 and FT3 well over-range. Yours are only a teeny-weeny bit over-range. And, that is to be expected with Hashi's, because levels jump around.
The definition of hyper is not 'suppressed TSH', it's 'over-range Frees'. This man knows nothing about thyroid, and he is dangerous. If I were you, I would find someone else, and never go back to that one. He would rob you of your thyroid for no good reason.
Whatever he says, the most important number is the FT3 - that is the active thyroid hormone. TSH isn't even a thyroid hormone, so how can it indicate that your thyroid is over-active? You cannot just take the TSH and think it tells you everything, because it doesn't. The three numbers should be considered together, with emphisis on the FT3. He has no idea what he's talking about, and should be reported to the highest authorities.
If you have signs of TED please do not consider having RAI - it will make your eyes worse.
Thyroid eye disease is a known side effect of RAI, and for this reason alone, don't do it.
There are many reasons not to have RAI, and please do look at the current research regarding treatment options.
Graves is an autoimmune disease that attacks your thyroid, and possible your eyes.
The thyroid is a major gland, and whilst under attack some of the symptoms experienced can be life threatening, but remember removal of the thyroid by either surgery or RAI ablation, does not solve the underlaying problem that is of your immune system attacking your body.
Professor Toft the eminent endocrinologist has written a peer reviewed paper entitled :
Thyroid Hormones Replacement - a Counterblast to Guidelines in which 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 iodine1-31 or surgery in patients with Graves Disease, irrespective of age or number of recurrences of hyperthyroidism "
The full article is on this website.
Personally, I think this says it all, and if I could have my time over, I would stay on anti thyroid medications and try and " ride it out " . There are many people on various ATDs who have been on them for many years. Either way you'll be on medication, whether for hyper, or hypo symptoms. The medics believe that they can manage hypothyroidism much better than they can hyperthyroidism but all I know is that I deeply regret having RAI for my Graves Disease, but I trusted the doctors because at that time I knew nothing of the disease and believed the doctors knew best.
Graves is so much more than most medical professionals understand.
I suggest you take a look at the following website run by Elaine Moore.
This lady has the disease and after RAI treatment in the late 1990's found no help nor understanding within the medical profession to help her with her issues, so wrote a book to help others in the same situation. She is now a leading researcher into the disease and runs a well respected website in the States, with an open forum much like this amazing site.
I am presuming you are now on ATD and the plan should be to bring you back into range, and then stay on as low a dose as possible, giving your thyroid time to adjust and possibly return to normal, putting you into remission.
Your body clock and metabolism have been thrown off course and there is probably a chance that your core strength has being weakened. No thyroid hormone treatment will work effectively if your ferritin, folate, B12 and vitamin D are not optimal, so these vitamins and minerals must be maintained at good levels to help you ride out this difficult period.
I am with Graves Disease, diagnosed 2003 at the age of 56, had RAI 2005 and am now dealing with Graves, thyroid eye disease and hypothyroidism. I am self medicating and having to buy my own thyroid hormone replacement as the current situation of believing everybody is fine and well on Levothyroxine is a myth.
Please reconsider your actions, look into the options of keeping your thyroid. It's a major gland responsible for full body synchronisation, including your mental, physical, emotional, psychological and spiritual well being as well as your internal central heating system and metabolism.
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I, too, have difficulty believing that you have Grave's with those results. The problem is, doctors don't know the difference between Grave's and Hashi', incredible as that may seem. Personally, with those results, I would refuse to take anti-thyroid drugs, let alone have RAI!
Have you had any tests since then? I thought that with Grave's, you were supposed to have a blood test every four weeks. So, I think it's time to start pushing for new labs! They could be pretty low by now!
I think I need to see the doctor and ask more questions, I was put on medication on 31st Aug , I take Tiamazol Metibasal 5mg x3 for thyroid and Concor 2.5mg x1 which are a beater blocker. I had a blood test the week after and am due to have another in 2 weeks.
I was told not to stop taking the medication without a doctors say so,
Well, if you were actually hyper, that would be good advice. But, you aren't. You have slightly raised thyroid hormones and a suppressed TSH (pituitary hormone). That does not constitute hyperthyroidism. You need to see someone else, because this guy has no idea what he's talking about. He's dangerous - I'm repeating myself, I know, but I feel very strongly about this. See someone else, please.
Agreed - although the TRAB aren't terribly elevated. All the more reason to see someone who knows something about thyroid and not rush into RAI. At the moment, the OP isn't even hyper. And, having been on anti-thyroid drugs for three weeks, she's probably now very hypo.
I had my first blood test four weeks after starting carbimazole then they doubled the dose and I wasn’t tested again for two months - far too long, I was very hypo by the time I saw the endo.
Once I started seeing the endo I was tested every month when I went to see them.
So if you are not being been tested regularly you need to ask for that.
Just a little concerned that your focus is on changing your diet when from your readings, it would appear that if anything, you'd benefit from a Second Opinion!
As a rule of thumb with Thyroid issues (with very, very few exceptions - of which you may indeed be one), Graves = significant Weight Loss and Hashimoto's = Weight Gain.
My advice is you carefully read all the fantastic information given below by our wonderful administrator SlowDragon. Fruitandnutcase, greygoose and humanbean have also provided some seriously comprehensive information - some of which I will definitely be sending to my sister who's also been diagnosed with Graves.
My cousin died from Graves three years ago and in the years prior to his death, he struggled to maintain a healthy weight and was advised to stay away from EVERY diet. Like you, his doctor advised him to ignore information on the internet and just eat anything he enjoyed with the one proviso of 'little and often'.
He didn't listen. He even became a Pescatarian (fish and seafood) at one stage and reduced his 'potato' intake claiming he felt 'bloated' whenever he had chips. He was convinced that watching his diet would 'cure' him but he was wrong.
Wishing you all the best going forward and hope you will take a 'balanced' approach to your eating once you've had a chance to absorb the brilliant information our administrators and others have taken their time to research and post for you.
Thank you for your message, I am still working my way through all the information and comments everyone has kindly given me, I have also spoken to my health insurance and have a video conference with a specialist on Monday as I have become over whelmed by it all. Thanks again
So so sorry to hear you're overwhelmed with it. I can honestly understand and I know from past experience that although it can be reassuring posting on the forum and receiving loads of replies. Receiving lots of replies is in itself also overwhelming. Especially if you receive lots of detailed responses, some of which may even be conflicting or questioning - like mine.
Yes. try to put all our chatter behind you for now, have your video conference with your specialist, take a deep breath and come back to read and research as much as you can from forum members as you can in your own time.
The good thing is we all mean well and are all rooting for you to feel as well as you possibly can and be as informed as we can possibly assist you to be so we don't mind sharing our experiences and knowledge with you and are here for you when you need us.
All the very best going forward. Now you know we have your back, you can confidently ask the specialist as many detailed questions as you can and be satisfied that you are receiving the information you need.
Knowledge is power so go be powerful!
Wishing you all the best going forward and hope you eventually get to a place of calm reassurance.
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