I was diagnosed with Graves early 2017. I got back on an even keel and was in remission for 18 months but out of the blue had a thyroid storm in July 2020. I've been on Carbimazole, Propranolol and Apixaban since then. I haven't actually seen an Endo at all. I was diagnosed when in hospital in July 2020 by the senior Registrar. Since then; I had a telephone consult with a doctor I assumed was an Endo but all he did was verify my meds, the dosage and that was that. After speaking to him I received a copy of the letter he'd sent my GP and the letter stated the opposite of what I had said to him. I sent a letter to the hospital doctor and bullet pointed my comments. Basically all he said was take the pills and once you're stable you can have RAI. I had told him I wanted to speak to him face to face before I made that decision and I wanted to know if there was any alternative to the RAI. I was supposed to see that particular doctor in December 2020. My appointment was cancelled by the hospital, a week later I had a phone call from him demanding to know why I wasn't there for my appointment. He was not amused when he realised I hadn't been informed of the appointment, and was bad tempered when I said I wanted to see someone face to face. He then announced he was leaving but he would make me an appointment for early February with the new Endo, and that was that. Stupidly, in early February, I decided to lower my Carbimazole (10mg to 5mg) as I was so sluggish. For two weeks I felt so much better, but end of week 3, I had Afib and ended up in A&E, so back on the 10mg of Carbimazole. I was told they make an appointment as they had no Endo. To date I haven't received an appointment, in the mean time I am in Hypo, I am okay first thing in the morning but after lunch I can barely stay awake. I contacted the hospital a couple of weeks ago and asked what was happening regarding an appointment and was told it was 2-3 months wait but nearer 3 months. I do understand that Covid takes priority but I'm getting really depressed and so fed up. I can go private, its not what I wanted to do but I feel I need a medication review at the very least and my GP will not do it. Is anyone else experiencing this feeling of being overlooked and neglected? I'm at the stage I don't know if how I feel is being caused by my thyroid function or side effects from my pills!
Feeling dreadful: I was diagnosed with... - Graves Disease Su...
Feeling dreadful
Hi. Sorry to hear about the incompetence you are receiving. If it were me I would look for another GP. This one is not helping you at all. Are your vitamin levels optimal? Just a thought. I would also look to go privately to save your own sanity. Make a decision as to what you want to do. Waiting around is not helping at all. Sorry you feel so low. I empathise with you. It’s so hard and so bloody tiring and frustrating.
Thank you for being so kind. I'm not often self pitying. I having a bad day 
In no way when I read your post did I think u were having self pity. If you were that would be understandable. I am frustrated for u. Purple Nails had some great suggestions. I try to be independent and solutions focussed so I try and think how do I move myself ahead. My GP does my titration monthly of my AT drugs.
I have blood test forms posted out to me and a specialist nurse contact me to discuss medication adjustments. Simply not doing it because no endocrinologist is appointed is not acceptable of the hospital nor the GP who is equally responsible for your care and perfectly able to order thyroid function test. Although often just TSH is tested FT4 if TSH out of range.
You may make faster progress if you arrange a private blood test. If you consult a private endocrinologist arrange a full blood test first.
A private blood test will include FT3. More advanced packages also include Thyroid Antibodies TPO & TGab. Also important to test Vitamin D, ferritin, folate and B12.
Was TSI of TRab ever previously tested to confirm diagnosis of Graves?
Have you ever had any eye related issues, as RAI is not recommended if you do. You don’t have to agree to RAI if it’s not right for you or you may agree it’s better than remaining on medication which you can do, despite Doctors following protocol. You may feel surgery is a preferred option.
Once reviewing your results you might find you need between 5mg & 10mg. I was told to alternate between 5 & 10 daily. Now I cut a 5 in half to take 7.5 every day. So I don’t have to remember it it’s 5 or 10.
I had a full blood screening in 2017 and was told I had Graves. When I had bloods done in July 2020 I was told I had anti bodies present. I had very dry eyes with my first flair up but not this time. They just occasionally feel gritty. I used evolve eye drops when this flair up began but I haven't needed anything for over 6 months.
I get my bloods done at the hospital not the GP because I live on the border of two counties and my GP is in one county the hospital in the other, the GP had to FAX results to the hospital, because email wasn't secure enough. I kid you not!
First time around I got myself a pill cutter and did my own thing with my medication, which was why after being on 10mg of Carbimazole for a couple of months, I thought it would be okay to drop to 5mg, which triggered the Afib. If I am honest I am now a bit apprehensive of trying anything again before I speak to a medic.
I haven't seen a full break down of my blood results this time around because the last print out I asked for I was given lots of numbers but no percentages!
I think my first step should be to get a private blood test. I will look into that today.
You've given me a few things to consider and its much appreciated
Thank you
You need historical copies of your results never trust being advised “good or in range” doctors often say this about anything which isn’t concerningly out of range. The also don’t always conduct the right tests, especially with regard to antibodies. Alway obtain printout via reception (don’t ask doctor) or arrange online access for GP records.
Don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to be obstructive just say they are for your records. You are legally entitled to your records.
This should show where in range you are. You don’t always need to know the percentage but we have a way to work it out.
helvella - Range Calculator Spreadsheet
healthunlocked.com/api/redi...
Theres another calculator is here
Once you have your results and get to grips with understanding the levels you can work with your doctor to get the levels stable.
Thyroid eye disease can be active or stable. RAI is known to worsen it. Preservative free drops are recommended for dry eyes.
What’s a fax?. No I’m kidding, I am actually old enough to have used one. Although a few years ago I witnessed a young graduate asked a colleague where I was working “is that a fax machine?”
Private testing options
thyroiduk.org/help-and-supp...
Thank you!
Could you share more about the thyroid storm and how it happened?
Thank you
I can't imagine how people cope with it but a storm/crisis can happen all at once and that must be so terrible. In contrast mine was bad enough but built up over a few days. The problem with thyroid symptoms is you don't immediately realise that it is your thyroid because things happen individually, not as a whole.
However, first I realised my skin was incredibly dry. I was going to the loo all the time. I was constantly thirsty and my anxiety levels shot through the roof. In general I am very calm but I was so horribly irritable, bad tempered and I couldn't sleep. I would say that happened over the first few days. Due to Covid I hadn't seen my brother and he and his wife came to visit. We had a meal and a few drinks. I woke early with my heart pounding and I felt dreadful, I dragged myself out of bed, took the dogs out but then had to go straight back to bed.
I managed to get up again to say goodbye to my brother and his wife and once they left I phoned 111, but my husband had to take over at that point. I was getting confused. I don't really remember but himself said later I couldn't remember my name or telephone number. I was rushed to hospital straight into resuscitation.
My heart was fibrillating ; heart rate and blood pressure in stroke region and the medics thought I was in danger of having a heart attack.
Because of Covid my husband wasn't allowed to stay with me and was sent home. I don't know what I was given by injection but I was put on a drip had scans, X-ray all the usual tests done and kept in over night. It was all very dramatic with no forewarning. It took a 6 weeks on the medication for my heart to settle to more or less normal.
Thank you very much for sharing. This is very powerful first hand account stuff, invaluable to all of us with Graves.
Were you undergoing any stressful situations or circumstances prior to the episode?
Unfortunately yes
Thank you.I had a similar type experience to what u describe but certainly nothing as major as what you unfortunately had to go through. This was immediately after my mom had been hospitalised a few times.
It made me wonder how I would be able to control these stresses, so that my body would not react in such a dangerous manner. The only thing I could think of was what if I got my thyroid destroyed? I will definitely put this question to a competent endo if I come across one : (
Dear Ling :
Please think this through ;
I deeply regret destroying my thyroid for an auto immune disease I still live with.
True it won't be life threatening - if it ever would have been - but I find hypothyroidism more challenging than hyperthyroidism.
I now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism.
I have also had to resort to buying my own thyroid hormone replacement as the NHS only offers one option of the three that are widely available in most other countries.
We have recently seen papers released suggesting the first phase of Graves disease can take years to come under control and so the current 15-18 month window for treatment in hospital outpatients unreasonable.
I think we need a total rethink on what Graves Disease is and can do to a person. Looking at the root cause takes time and just blocking or delaying and then removing such a major gland is like taking a hammer to crack a nut.
I believe many people would have been better off on low dose long term AT medication given the choice, as at the end of the day, we are looking at a life long auto immune disease.
Knowing that I can stroke out from a surge of hormones and high antibodies because my body has no control over this disease when it's under stress even with medication, is something that really bothers me.
Its been 6.5 years with Graves, and I've not come off the carbimazole at all, though its a low dose. It's an indication that the Graves is very unlikely to go into remission.
As I mentioned to you before, I do not make this decision lightly.
And we must understand, that whilst on this forum, even as we try to advise others to hang on to their thyroids as there are many who might benefit in giving ATDs a real try, there are also those whose conditions cause serious consequences that warrant removing the diseased hyper thyroid to prevent serious long term damage to health like heart failure, arrhythmias, stroke, osteoporosis, etc.
I know u mean well, and I appreciate your concern.
Best wishes always : )
I know you know that I mean well - and I know I don't need to teach you to suck eggs :
I've just been so unwell dealing with the long term consequences of RAI treatment and wouldn't wish what I'd been through on anybody else:
Sending a hug or 3 as I 'm not able to like anyone again, today ;
Take good care, and of course I support whatever you decide - it's not like you haven't tried, and I respect and admire your sharing of knowledge having learnt so much from you.
Hey there again :
I'm sorry you are feeling so low with what appears little supervision and adjust of the anti thyroid drugs and all that Graves can throw at a person.
It could just be that you need your medication adjusted, as you might be now dealing with hypothyroidism as well.
Some people have T4 thyroid hormone added back into the treatment regime so their levels do not fall too far into hypothyroidism.
Obviously a current blood test showing your T3 and T4 levels could help identify where you are in all this : It is also important keep your strength strong and solid so it helps to know where your ferritin, folate, B12 and vitamin D are sitting in the ranges.
You could undertake these blood tests private and have an answer back for us to explain to you, within about a week ?
So then whenever your appointment comes through you will have some results yourself and information from forum members as to the next steps for you to consider with the endocrinologist or your doctor.
There are several private companies and you'll find details on the Thyroid uk website who are the charity who support this amazing forum.
Last time I believe you were thinking RAI but now see you changed your mind - the other option would be surgery and a thyroidectomy, which is actually cleaner, more precise and with the gland and all it's contents removed from the body.
Obviously no surgery is without risks, so totally understand the dilemma and if you have any eye issues now RAI should not even be on the table.
There is always the option of staying on the anti thyroid medication long term.
Graves is known to be stress and anxiety driven and no one lives happily in an isolation bubble and I read once Graves is " triggered " your body is more prone to react again after the first phase is over.
This first phase of the disease can be a number of years to doesn't comply or understand the NHS 15-18 month window for treatment in out patients.
Many patients are " sorted " within this window only to return a little later and encouraged to see themselves as failures as the " remission " short lived and encouraged to have RAI or a thyroidectomy.
However it is pointless coming off the AT medication if your antibodies are still high and raging as your immune system is still active and upsetting your whole body's synchronisation through it attacking your thyroid.
Did you ever get initial confirmation of Graves antibodies being over range and positive ?
They would be looking like a TSI (worded as a thyroid stimulating ) or a TR ab ( worded as a thyroid receptor blocking ) antibody ?
Have these been run again and how do they compare to your original results ?
There are many people who use this forum who are on long term AT medication and very happy with this arrangement and I believe adjust the dose themselves as to life stressors, as and when necessary.
I was diagnosed Graves in 2003 age 56 and given RAI in 2005 - I knew and was told nothing and have put myself back together again, starting around 12 years later in around 2017 having spent over 2 years going around various hospital departments but with no resolve to my symptoms.
i was refused both other thyroid hormone replacement hormones option : T3 and Natural Desiccated Thyroid in 2018 and decided to trial them myself. Both worked well for me and I have been self medicating now for three years, and I manage lingering Graves, thyroid eye disease-caused by the RAI- and hypothyroidism.
Hi Penny, You sound as though you have been though such a lot.
I did have Grave's confirmed and I do still have antibodies. Your comment regarding treatment length of time for this type of thyroid condition resonated with me. I was only too happy to get off my Carbimazole and Propranolol but everyone is not the same and each individual responds to medication in subtly different ways. Thank you for pointing me to the Thyroid UK site for a private blood test. I am going to go and look at that shortly.
I am pretty sure I am now in hypo; I am so tired all the time.
I am an adoptee and only found out that thyroid conditions run in my birth mother's family. I am reunited with both birth parents families but my maternal grandmother, great grandmother and birth mother all died from heart failure brought on by thyroid complications. I have a large number of cousins and a there are quite a few of us with both hyper and hypo. My daughter got postpartum hypothyroid, which was terrible for her and its only now that her youngest child is almost 5 that she has finally hit on the right level of medication for her.
Thank you for taking the time to reply.
No worries - in future can I suggest you post on the Thyroid uk forum as there are many more members " over there " :
And also when you want to reply to somebody you need to actually press the reply button with their name then highlighted as otherwise the person doesn't get notified and you'll feel ignored - which isn't what we want.
I just happened to look on the rolling screen and, by chance, saw your reply to me.
I didn't know that about making the post noticeable. I will make sure I do that in future! And yes I will go to Thyroid UK. thank you
I know we all have to start somewhere - and have all been there as well !!!
If you just write a post - we choose to reply - if you then choose to reply to any individual by pressing the reply button and their name coming up in the heading they get an " Alert " on the top of their open page and also an email just like you did then to me.
Thank you Penny
Hi dear penny, fyi the HU site has been problematic for the past week.
Even when you hit the Reply button, the reply goes to the general thread. However, if you refresh the page, your reply will go to the person you intended it for.
Best wishes.
Thank you Ling - xx
I've applied for my Medicheck kit as soon get the results I will be back with an update. Thank you everyone for all your advice and kind words x
Ling, Penny Annie and Purple Nails have given u great advice. There is good support for you here with great people who understand Graves’ disease
Hi Ruane. I totally sympathise with you. I have Graves (diagnosed July 2020) and for me, looking back at my tel and in person appts, I don't think I have ever seen a consultant - always endo nurses or different registrars. SO frustrating as there is no consistency to my treatment.I would really recommend if you can afford it seeing a private endo consultant for a half hour appointment. Go with all your bloods and history and they can chat through with you, talk about your options and develop a plan for you. I ended up doing this and am so glad I did. You're probably talking £260-280 for the appointment but it will hopefully be really reassuring for you to speak to a professional and be listened to.
You're not alone in this. Sending much support your way x
Is it ok for you to share what the private endo said?
Thank you
For me it was a question of considering other medications/methods as the carbimazole wasn't really working. So PTU and block and replace were brought up (options that the NHS didn't give me- they are keen now for me to have a TT or RAI...). I am going down the path of B&R as I feel I haven't given the AT meds enough of a go yet and the private endo agrees. Also he had a refreshing holistic approach and has got me on a probiotic and the 'ReNew diet'...
Whilst your antibodies are high there is little point in doing anything except play for time and stay on the AT drugs.
We have seen several papers these past few weeks explaining that this first phase of the disease takes as long as it takes and this could be years.
The longer the patient is on the AT drugs, the more chance there is of remission :
There really isn't a quick fix for Graves Disease as it's an auto immune disease.
I read of many people staying on AT medication for very many years with a "back up ' in the medicine cabinet. for when and if, those life stressors we are all susceptible to cause a few " hiccups " they have the support they need, to hand, to help calm down their immune system response.
Thank you Penny. I first had full on Hyper at the end 2016. It wasn’t pleasant but not as bad as this time around. I took meds for about 12 months. I had 11 months feeling fine but then I began to get occasional symptoms, which went on until July 2020 when it walloped me! I do think I was too optimistic that I would get back to normal. I understand your point about AT, hopefully the Endo will be interested enough to help me get my management right this time. Thank you for being supportive x
The NHS go the cheapest route to begin with. I’m on 40mg Propranolol, 10mg Carbimazole, I was on 40mg but in December the Endo/doctor said I was in hypo and lowered the dose. I take 40mg Apixaban, I was given Apixaban to avoid blood clots when I had Afib but I’ve not had a proper review of my meds since this started July 2020.
Hi Ling, I’ve no problem sharing. I sent the blood test back, I don’t know how long it takes to get the results but I would guess next week and I’m contacting the private Endo tomorrow. I will be back once I know more.x
Thank you Hannah
Hi everyone I got my results back and these are they. My vitamin range is normal.
I tried to post the actual photos of the information below but it wouldn't display properly
I say red and green zone because on the pictures it shows a bandwidth of where the results are within the range which is green and outside normal is red.
Obviously I am taking 10mg of Carmbimazole which is giving the appearance of me being in the normal range but I get the idea from the results my 'normal' wouldn't last very long if I stopped the medication.
Inflammation
CRP HS 9.2 ( range 0-5) red zone
Thyroid hormones
TSH 5.95 ( range 0.27 - 4.2) red zone
Free T3 4.1 (range 3.1 -6.8) green zone
Free Thryroxine 18.9 (12-22) green zone
Autoimmunity
Thyrodglobulin Antibodies 378(0-115) red zone top end
Thyroid Peroxidase 201 (0-34) red zone top end
Antibodies
I would include the vitamin even if in range as they may not be optimal.
Your FT4 is good, but your FT3 is lower than you would expect.
FT4 69.00% through range & FT3 27.03%. Are you on a high dose of propranolol as this can affect conversion.
Your TSH is high & over range and you wouldn’t expect that. Usually the TSH becomes suppressed eg <0.01 when hyper and can often take time to rise so seeing such a high results is unusual.
One theory is your TSH is usually much higher and levels very low. you had a sudden rise causing it to drop but not below range.
10mg carbimazole is not a very high dose, were you initially taking higher dose? How long have you been taking 10mg carbimazole?
TPO & TGab are associated with Autoimmune Thyroiditis (Hasimotos) they can also be elevated with Graves patients (but usually mildly) so you need historical records to see if you were tested either TRab or TSI to confirm Graves.
I recommend you start a new post with all your results on the main thyroid forum. As there are some particularly excellent members who can advise on optimal vitamins.
When you were in remission in 2019 what were you results like then were you always in range?
I was on 40mg Carbimazole from July 2020 - December 2020, I was put on 10mg in December as the Endo said I was in hypo. I am 40mg of Propranolol and 40 mg of Apixaban
Vitamins
Folate - serum 13.4 ug/L >2.9
Vitamin B12 -
Active 123 pmol/L 25.1 -165
Vitamin D 65 mol/L 50-200
Iron
Ferritin 106 ug/L (13 -150) green zone
Optimum Ferritin level for females : >27 ug/L
I forgot to say I was TSH 0.01 the end of February so its gone up in that time.
First time around, all I saw was a steady improvement in everything, which was over around 18 months. I was normal on everything when I was in remission and felt better than I had for decades.
I began with symptoms in late 2016 and was diagnosed as hyper Feb/March 2017, put on meds right away but it was May 2017 when I was told I had Graves. I was in a different hospital this time around and I was told again I had antibodies which indicated Graves in July last year when I had the storm/crisis.
But Doctors often diagnose Graves based on low TSH. They don’t always test the right type of antibody when they do test them.
That is a bit worrying! So you're saying I could as likely have Hashimoto's as Graves?
What did the doctor say?
The doctors report basically says I'm showing signs of hypo, which I know because I'm still on Carbimazole and the doctor suggests that I should go to the GP and get checked out. So I now I don't feel as though I am making a fuss about nothing and I can go and see a private Endo and hopefully get some sensible answers to my questions, and not be dictated to.
It's not an easy one.
FT4 and FT3 are in range, in fact FT4 looks quite ideal near the top of the range.
However, TSH is high, signalling hypo. And you can't really afford to lower the carbimazole below 10mg because of the still-high antibodies possibly causing the AF.
I hope you can consult a good endo and get this sorted out.
Good luck and best wishes.
Ps. There are folk at the HU AF forum, who have either had thyroidectomy or RAI to deal with the AF.
Thank you Ling, I really appreciate you taking time to respond. I will have a look at the HU AF forum x
The report says you are showing signs of hypo based on high TSH and high TPO.
The doctor said in December I was in Hypo , which I wrongly believed would balance out when he reduced the Carmbimazole from 40mg to 10 mg. I did suspect there was something wrong because I am so tired all the time. I sit down and literally I'm asleep. My Graves diagnoses said I had thyrotoxicosis and I did have all the horrible symptoms of Hyper, although I do think if someone could separate the weight loss away from all the rest, they would very rich!
You may even have both conditions but without viewing TSI or TRAb results there no confirming either way. It would be a long time to have hyper bouts, without ever dropping to hypo levels (not including medication induced hypo). As for weight & symtoms in general, they are so varied it doesn’t always correlate. I was untreated hyper for many years (fortunately not severely) and I gained a lot of weight, I read thwart about 10% of hypers do.
It is also true of TED & Graves, most doctors will argue TED only occurs with Graves but it can occurs with hashis and even rare cases when someone is euthyroid.
That is really interesting, I lost just over 4 stone first time around and 3 stone this time, but I have put a lot on now even though I am eating a decent diet. My condition is hereditary; I know that my, great gran, gran and my birth mother had problems, my daughter got postpartum hypothyroid after her second baby in 2016. I put my own sudden onset of Hyper to all the stress that year.
Dear Ruane, I’m so sorry to hear of all the problems you have had, you have been given some good advice from our lovely team of experts. We are lucky having them there for us. I’m no expert, only a fellow graves sufferer. All I can say is don’t be railroaded into any drastic irreversible step. My thoughts are with you. Good luck.
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