It's been just over 3 years since I've been diagnosed with Graves Disease.
After my first taper down of Carbimazole it wasn't long after dropping to 5mg EOD that I relapsed. My endocrinologist in the NHS said now it's happened once it's pretty much guaranteed it would happen again and again, even more so being male.
I've been on 10mg now for almost a year since that and my levels are 'within range', I am still testing positive for Graves antibodies, though.
There is currently at least a one year wait for surgery (total thyroidectomy) in the NHS so I am on that waiting list, as if I have to take definitive action at some point in the next decade I'm more in the mind to just get it done, rather than have all of the ups and downs.
Even though I'm 'within healthy range', I still have some symptoms going on that weren't present before which I'm really not keen on! Mainly lack of patience, irritability, low libido, fatigue, anxiety. Not all of these symptoms all of the time, but definitely still very present and not an issue before.
I guess my dream scenario is I have the surgery and all of these symptoms go and it's happily ever after - but after reading some stories of post surgery I'm realistic to the fact that this may not happen.
I wonder if I should be doing more now to see if I can eradicate these symptoms and leave surgery as long as possible, or whether people agree it is the best thing to proceed with and I should at least see some decent improvements.
In terms of what I'm currently doing to improve my symptoms, this includes; getting good sleep (as much as I can with a baby!), exercising regularly, eating healthily, taking Vit D, Magnesium, Cod Liver Oil etc, trying to keep stress low (again not easy when self employed through COVID and having a lively child).
If anyone could share any experiences, tips, or words of wisdom I would be really grateful
I'm just worried about pushing for surgery and I end up feeling no better or worse.
Thank you!
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First step is to get FULL thyroid and vitamin testing
Please add most recent Thyroid and vitamin results
If taking any supplements that contain biotin, stop these a week before ALL blood tests as biotin can falsely affect test results
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
Very important to test folate, ferritin and B12 at least once year minimum
Test vitamin D twice year when supplementing
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
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Understood, this was my worry! I'm glad I found this forum as some didn't seem to be active and I wasn't getting a reply. So hopefully someone can help me be a little less confused with it all and I can find some slight improvements!
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait….obviously likely longer at moment )
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
If you need to obtain your results from practice don’t accept verbal or hand scribbled notes insist on a printed copy with ranges (ranges vary between labs so essential). I always used to ask reception not dr (as doctors often don’t like you to know) They sometimes would say they need to check with doctor, but once the records have been reviewed by doctor you are legally entitled to them.
If you are in England practices are contractually mandated to provide online access to your medical record. Be sure to request full access and historical record. Other areas vary but worth asking. Online access very useful.
If you need hospital held records the GP may not have access to them but you can approach the department secretary who should be able to send copies. If there’s any obstruction there are other ways to request copies of hospital records.
What are your results? For full thyroid you need TSH, FT4 & FT3. In range might mean very low. Especially if dr is going by TSH. The current symptoms you mention suggest low thyroid levels.
Which antibodies have been tested what were results & ranges?
Important to test folate, ferritin, vitamin D and B12. You need optimal not just in range. Best to test first to know level of supplement required if required at all.
If carbimazole works well you can opt to stay on long term. Doctors imply this isn’t an option but don’t be pushed into a irreversible option unless it’s something you decide is right for you. Doctors view hypo easier to treat & Monitoring hyperthyroid patients is expensive. My specialist didn’t want to monitor me long term and discharged me back for GP to monitor and said to be referred back once ready to undergo RAI, which is what I was offered, they wouldn’t discuss surgery, I’m hyper from nodule not Graves.
Gluten intolerance common with Graves. Testing while on gluten diet 1st step to rule out coeliac. Even if negative for coeliac worth trialling total gluten free diet as test won’t detect intolerance / sensitivity. Can be cause of gut issue and affect nutrient absorption.
Can you just please confirm that you have the medical evidence of either TSI ( a thyroid stimulating ) or TR ab ( a thyroid blocking ) over range and positive reading at diagnosis and your initial T3 and T4 readings:
Graves is an auto immune disease and your thyroid not the cause - but the victim - as your immune system has been triggered to attack your body and more especially your thyroid.
Graves Disease is said to be life threatening if not treated because of the gland under attack - a very major gland - the thyroid.
It is also equally life limiting managing without the thyroid gland especially when not optimally medicated and dealing with primary hypothyroidism.
It is all a question of degree :
How bad are your symptoms and how experienced is your endocrinologist as it can take considerable time and skill to help you ride out this first phase of the disease.
Balancing T3 and T4 levels to keep you as well as possible, possibly adding back in some T4 so you don't fall too far down the slippery slope into hypothyroidism which is with equally disabling symptoms and in my opinion, much worse symptoms.
When metabolism is running too fast as in hyperthyroidism or too slow as in hypothyroidism you'll likely find it difficult to extract essential nutrients through your food, no matter how well you eat, and you need your core strength strong and solid to support you through this period of flux, and your ferritin, folate, B12 and vitamin D maintained at optimal levels.
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism, so the symptoms are diverse, some scary, some seemingly not related and it can be a " bumpy ride " finding the right level of anti thyroid medication whilst your antibodies are still raging.
Graves is said to be a stress and anxiety driven AI disease and there is little point suggesting you try and " find remission " or for that fact even " find Nemo " when your antibodies are over range, but sadly the medial mainstream do not usually check the antibodies again, to know this fact, causing many patients to " fail " the mission of " finding remission " and feel they have no alternative but to loose their gland.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
Currently the NHS treat primary hypothyroidism with T4 monotherapy and it is very difficult to obtain any other thyroid hormone replacement option through the NHS.
Many of us on here have been forced to self medicate with either T3 - liothyronine or take Natural Desiccated Thyroid, though both are meant to be available through the NHS.
If you haven't heard of the Elaine Moore Graves Disease Foundation website I think you might like to start reading up on this poorly understood and badly treated AI disease.
The most current research is suggesting that the longer one stays on the AT medication the more chance there is of finding remission.
P.S. I'm with Graves diagnosed 2003 and given RAI thyroid ablation in 2005 becoming very unwell around 8 years later when I started my own research as the NHS had no answers.
Elaine's first book Graves Disease - A Practical Guide - had all my answers, but my doctor refused her copy of the book I purchased for her, and then I found this amazing forum and am deeply indebted to all forum members who make this forum so special.
I now self medicate with NDT and am much improved and managing lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism.
Well, you still have a year to decide, which frankly is a bonus, as my advice is think hard and do not get pushed into it by your consultant. I was innocent, no Healthunlocked to advise me and after only a desperate seesaw year of dose changes, my useless private consultant recommended Thyroidectomy. Of course he would, as he could not be bothered to really help me and probably knew less than a first poster on this site. Sadly that is fairly common. My best advice is try hard with the carbimazole and if you cannot make it work, ask for the other product, of which the name has disappeared from my poor old brain but is the only other treatment available. It is something like PPL and I am sure someone will rush to help me. I know someone who used it for years and had three babies while using it, so it clearly is very safe.
If you do opt for thyroidectomy, as I did, ask for confirmation that if you do not do well on Levothyroxine alone, you will be offered Liothyronine to add to your Levothyroxine. It changed my life but I went years feeling ill and miserable before I discovered it. I now get an NHS prescription which is rare and very fortunate for me. How long it will continue is anyone’s guess with our NHS struggling to deal with Covid. Do ask if you have any more questions, as there is a wealth of knowledge on this amazing site.
You worry you may feel worse after surgery and you are wise to consider this possibility. My reasoning 6 yrs. ago when offered a thyroidectomy for my Graves was why would I risk having an op which was irreversible and not without risk when I was doing very nicely thank you on my Block and Replace meds. As pennyannie says staying on meds longer than the arbitrary 18 months seems to give a better chance of Remission. I feel well on 7.5mg. Carb. + 75mcg. Levo and only need the occasional adjustment. People will comment on your results when you have them and you may only need a small change to alleviate your current symptoms. Having to wait a year for surgery may be no bad thing as it gives you time to experiment, learn more and reconsider.
Sorry for information overload! Not sure if it'll help show the bigger picture. This is pretty much all I have. I'm on 10mg Carbimazole a day at the moment. Sometime towards end of 2019 / early 2020 I relapsed and went back up to 40mg briefly, before ending up where I am now.
It's taken me to type this out to realise ft3 was only tested in the earlier days.
I still need to have a coeliac blood test and I'll have latest update on graves antibodies next week - more to follow!
Very hard for me to know whether I'm in a good place with these results or not, so if anyone can give some pointers I would really appreciate it
Positive TPO isn’t unique to Graves. It is marker for thyroid autoimmune, but more common with autoimmune thyroiditis (Hashimoto’s).
Graves stimulates the thyroid continuously with hashis the immune system attacks the thyroid and the destroyed cells can cause levels to go hyper, but this is often short term and over time the damage renders the thyroid under-active.
Your levels were quite high initially but it’s not unusual for patients with Graves to have levels over 3x the norm. You also had a relapse after many months and this is more likely with Graves. It is possible to have both conditions.
To be diagnosed with Graves you must have positive Trab or TSI were either of these tested?
Looking at you last results.
20/12/21: TSH 3.55 (0.27-4.2) a healthy TSH is around 1. So yours is high. Doctors like to see it in range. they especially freak when it’s below range. After being hyper the TSH can stay lower than is should so TSH isn’t reliable. (My TSH stayed under range even at hypothyroid levels)
Your ft4 17.7 (12-22) is 57% through range. If your stable doctors aim for midrange (lower if you are likely to rise unexpectedly) so result is ok for FT4.
FT3 not tested. Some with hyperthyroid can have disproportionately higher FT3. But you currently have a high TSH. I would bet your FT3 is low, but it’s just a guess without test results. FT3 is the active hormone, Many say they feel unwell if it’s low. Doctors prefer to go by TSH and not test FT3 at all.
Sorry yes, TRabs were tested. Combo of not finding some of my documents and not understanding them all.
I found some more info on the more recent tests too and my TRabs info, so you will see they've only been tested on 14/2/19 and 2/10/20. Aside from 2 weeks ago, of which no results yet:
14/2/19 TSH receptor antibodies – 58.3 iU/L – positive. End of RX. 2/10/20 - 2.3 IU/L – positive
17/3/21 – “Whilst taking CBZ for 5mg twice weekly from 10/2/21 your thyroid test has worsened with TSH now fully suppressed at below 0.02 mIU/L, T4 36.6 and T3 10.1. Please increase to 20mg CBZ p/day
16/4/21 - Increased CBZ from 20mg to 40mg p/day (post relapse, don’t have results for this date)
4/5/21 – Test showed TSH below 0.02 mIU/L, ft4 25.9 pmol/L and ft3 6.9 pmol/L. Was told to stay on 40mg CBZ for 1 week then drop to 20mg CBZ p/day.
3/6/21 – Dropped to 10mg CBZ p/day (no results shared with me)
7/7/21 – No results shared but was told I was ‘stable’ and to stay at 10mg CBZ p/day
16/8/21 – TSH 1.6 mIU/L on 10mg, was told to stay on this
20/12/21 – As well as Thyroid check results for Total 25-Hydroxy Vit D were 69 nmol/L
Not sure if anything else jumps out based on TRabs?
TRab usually has a upper limit eg <1 or 0-1 range. Exceed it and you have positive result and confirmation of Graves, which you have. You haven’t added the range but it looks very high so clearly positive.
Your FT4 & FT3 results initially were 4x the normal range which is also very typical of Graves.
You made a good start putting most of your results in date order. I see you noted some of your dose adjustments but not all. You do seem to be monitored fairly well. Dose seems to be adjusted down as you were Hypo and increased once relapsed.
Usually 5mg CBM per day is continued as a maintenance dose for at 18m in total. Unless that put you hypo realm it may be that your titration was somewhat “rushed”. Given that your doctors knew and told you higher the levels of Trab makes relapse is more likely seems wrong you weren’t on a standard maintenance dose but without seeing exact results and dose adjustments I may be incorrect.
Not very many get repeated TRab test. Its often only used for diagnosis.
Others may miss your results history as it is at end of tread. Once you have new results start new tread, Include your historical results in your profile.
You may find this link helpful it allows you to calculate the % through the range.
I agree about keeping a diary of symptoms to compare with results. Also make a note of any other medications and supplements, it’s very easy to lose track.
Having a fit bit or other heart tracker also very helpful. I find the same with resting BPM correlates well with results.
Optimal vitamin D is over 80 or nearer 100. 69 is low. Were you supplementing at time? If yes, How much & how much magnesium? Magnesium is important vitamin D co factor. The other import co factor is K2 MK7 this will direct calcium to teeth and bones where you want it and away from tissues and vessels where you don’t. “Better you” do a mouth spray which contains both (red one). Same Brand also offers In separate - green for vitamin D, purple for K2.
Looking at your thyroid results I am a little confused. You were diagnosed Graves at the end of 2018 but you do not show any TSI or TRAb results to confirm this. TPO does not confirm Graves. You were started on 40 mg Carb. and titrated down as you were becoming hypo. You say treatment was stopped after about 6 months but you relapsed. Have you given us all your results as I cannot see where you were hyper again. All results you give since Feb 2019 are within range and your fT3 is under half way so your symptoms are more likely from being hypo. If you are on 10mg. I would want to reduce to 7.5 / 5 / 2.5 to see what happens. You may want to come back with your new results (especially which antibodies have been measured) for comment.
Ok, makes more sense now. Good you are being closely monitored . You might find it useful to make a note of your symptoms against your blood results. ( If my pulse is over 70bpm I am hyper and below 60 I am becoming hypo.) My Endo said if my TRAb was over 5, I was more likely to relapse if meds were stopped. I am at 16 and so I continue on my low dose Block and Replace. You have a lot to think about Took me 3 yrs. to understand how my Graves affected my body. Good luck on your journey.
Hi, yes it definitely feels like a risk game doesn't it!
I wouldn't be too happy to stay as I am now forever, but understand surgery could be a big mistake. Hopefully I can find some middle ground by getting some feedback on here, on things I may have missed. It's hard to know what tweaks (like gluten free etc) could make a big difference!
Hi. These are my hyper numbers just so I can compare with your own.
TSH <0.001
T4 65 range 10-24
T3 40 range 2-6
TPO 46 <10
TRAB >100 >0.8 is positive
My TPO 18 months ago was 462!! Greater than 10 is positive. I did all the vitamins advised here and went gluten free and got 462 down to 46. So I think gluten free worked as did the vitamins.
TSI is also positive.
Gender should make no difference for remission or relapse.
hello there, I too am being treated for graves.Diagnosed 2018, tried titration with carbimazole only but that was difficult to manage , mainly due to me not being able to get appointments close enough together(Nhs).I have been on block and replace for about 2 years.Tried stopping all tablets about 1 year ago but relapsed badly within 2 weeks.Still difficult to get right dose.Had to start taking proprananol due to weekly migraines.To be honest I don't feel great great at the moment.I asked to be refered to ENT last June to discuss thyroidectomy and I have an appointment on 17th January(covid willing) .I have read everything on here and tried to weigh up my options.I don't have the money for private medication or consultations (just the odd private blood test).I am going to order one before the ENT appointment.Since christmas I have developed a cough( I never have coughs) and a feeling of glue in my throat that I can't swallow away.-negative covid tests.I feel something has changed so I wait to see.I still have an open mind but am more 60-40 for thyroidectomy.I am older than you I presume since you have a young baby and my grown up children think I will be better to have it out.I do know a couple of people who are better now they've had it done.The most important thing I think is to get all the information you can so you can make an informed decision.I know there is no going back.I amounts to how unwell you are and how much you can tolerate.Everyone is different.I'll follow your story with interest and wish you good luck.
Thanks for sharing! Yes I'm glad I found this forum now, as with around a year wait for possible surgery at least if I can get more information it'll be easier to make the right decision. Good luck on your journey!
I had a thyroidectomy for thyroid cancer and if you plan on doing surgery do yourself a huge favor and do a complete thyroid test prior to surgery so you have something to look back on when you felt decent ( I regret not doing this).
One of the problems with symptoms of an overactive thyroid is that up to a point, they aren’t exclusive to thyroid problems. The irritability and tiredness you mention could well by thyroid symptoms, but I expect they are also pretty common amongst parents with small babies in the house ! Over three years, I found my resting heart rate to be a pretty accurate indicator of my thyroid levels (obviously alongside regular testing, which you appear to be getting). You don’t need to splash out on a medically-accurate device, any decent fitness watch with a heart rate monitor should do the trick as you are really looking at the trend rather than the absolute value. Don’t get hung up on every little change, that will just add you your anxiety, but if you think your Graves’ symptoms have returned, knowing your heart rate is ‘normal for you’ may reassure you until your next scheduled thyroid level test (and if it doesn’t, just ask for the test to be brought forward - this may be easier if you are still under the care of an endocrinologist).
My own preference would have been to remain on a long-term carbimazole maintenance routine, but I never managed to get below 15mg/day, and even then my thyroid levels were typically at or slightly above the reference range. I felt really ill when first diagnosed and during a relapse, didn’t want that to happen again, and I eventually opted for RAI and so far am happy with the decision. Although RAI was mentioned as an option from the beginning of my treatment, I don’t feel that I was pushed into it, although my specialist did make it clear he thought it would be for the best (having supported me through three years on carbimazole, with a couple of relapses and one drop below the reference range)
You seem to be doing all the sensible things - eg exercising and eating well. You are on the waiting list for a thyroidectomy, but can always ask to be taken off it. My suggestion would be to use the waiting time to carry on as you are, maybe use a fitness watch to monitor your heart rate with the aim of reducing stress about a relapse every time you feel fatigued, and generally to try and relax about the situation until a month or thereabouts before surgery. Is due. Getting your vitamin levels tested and supplemented if necessary may be helpful, but over-stressing about them if they turn out to be ok may be counter-productive.
There are lots of articles on the internet about Graves’ relapses, most of them boil down to there being various factors which make relapse more/ less likely, but no certainty either way. Here are a few:
As others have suggested, there is no single decision that is right for everyone, you need to work out which would be best for you, and accept that you will need to be at peace with it as there is no coming back from thyroidectomy or RAI .
A few people have said about having a baby and the link to the irritability etc! Whilst I agree it can only test it more, I was pretty bad on this between diagnosis and her arrival!
I'm definitely going to use the waitlist time to do a lot more tests and hopefully find some small improvements that can help me make a better decision.
I do need to monitor heart rate more though, so thanks again for suggestions
Noted re Vitamin D. This week I'll be getting ALL suggested tests! So once I have them I'll start a new thread and post.
Do I need to get Thyroid Stimulating Immunoglobulins antibodies tested as well? I can't see it listed in the thyroid tests I looked at, but I've seen a couple of people say it's important to check? Or is this the same as Thyroglobulin Antibodies?
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