Is there any evidence of any connection/misdiagnosis of graves disease and the perimenapause or the menopause?
I ask because the symptoms I have are quite similar and I still feel like rubbish, so I have come off Carbozimole and have lost all connections between my Endo and doctors at the moment.
Hello there, I finally went to my GP in July 2018 with what I thought were menopausal symptoms.Extreme tiredness, feeling grumpy, painful joints, muscle weakness and excessive sweating and insomnia.I had held off for probably up to a year before that because I have always had migraines and definately didn't want HRT.I thought they wouldn't be able to help me.I really thought they would only be able to offer painkillers for the aching joints.However the results of my blood test showed I was severely hyperthyroid and had graves disease.Many of my symptoms overlapped with well recognised menopausal symptoms.I was prescribed carbimazole which I am still on.( I have documented my journey on my profile if you are interested) To be honest I don't even think about the menopause now and atribute any symptoms I have to graves disease(rightly or wrongly).I am currently awaiting a thyroidectomy.Hope this helps.
Yeah I am the same again, so maybe need to start again with the meds I just feel I got fobbed off with Carbozimole and then left with nothing I got so depressed that I had to leave my job as a learning support assistant because I didn't have the strength to support myself in a "situation" and now I am learning from home to keep myself sain. Where might I find your journey?
if you click on the picture next to my name it should take you to my profile where it gives some info about me and the questions I've asked etc.the bit at the top gives my story, click read more to show it all. Hope this helps.
you can also read answers to my questions if you click on them.I too have suffered alot with my nerves through this.Some days I couldn't face doing anything and the stress would be overwhelming.I try to do things in small chunks now so I don't get too stressed.Anxuety is oart of graves unfortunately.Sending best wishes to you.
Graves diseases Is confirmed by positive TSI or TRab. Were these tested?
Typically the TSH is < 0.01 (suppressed, undetectable). The FT4 & FT3 is often 3 times the normal range, but any continuous above range requires treatment.
Doctors often panic when they see low TSH and prescribe carbimazole. Specialist should also confirm cause but often don’t. If not managed correctly the FT4 & FT3 drops too low,(or TSH rises too high) or the hyperthyroidism is transient (often precedes the thyroid becoming hypothyroid) the medication Is soon stopped but levels still need to be monitored.
How long did you take carbimazole, when did you stop, what have levels been like since stopping?
This is one of the reasons obtaining your results (including ranges) and checking for yourself what has & has not been tested and where in the range your results lie is so important.
Don’t accept a verbal “fine” - in range is not the same as optimal or normal for you.
You could have more that 1 thing going on. Menopausal symptoms don't typically cause TSH levels to drop abnormal low to prompt a dr to prescribe carbimazole.
I understand. I will get my results out and post them up, thank you for your response I just feel so overwhelmed still......😁
Hey there again :
I'm sorry you are having such a bad time with all this :
It's been around a year since you came on here and I'm not sure we have had confirmed the Graves diagnosis - do you have any results showing over range antibodies - usually expressed as either a TSI - a thyroid stimulating antibody and or a TR ab a thyroid receptor blocking antibody.
Can you see any antibodies results - maybe a TPO or a TgAB ?
At the last endo appointment did he talk of adding back in some T4 - a treatment called Block and Replace :
Did he talk about RAI thyroid ablation or a thyroidectomy ?
Are you still on the Carbimazole or did you get switched to the alternative PTU :
Are you still on the Propranolol and at what dose ?
Do you have your most recent T3 and T4 results and your ferritin, folate, B12 and vitamin D results.
Hi,Yes that's correct. I started feeling really lethargic sort of flu like symptoms and also I couldn't breath too well and when I spoke with the locum doctor she was amazing BTW we need more of her and said why are u breathing so heavy -I said not sure I didn't actually realise I was so I had got used to it obviously. She had me in and did full bloods and it came back very low and she diagnosed graves' since then I was put on Carbozimole 15mg and the Propranolol of which I still need. I then got an Endo appointment he went thru bloods again and sent docs a letter stating that they should take me off Propranolol (after discussing with me that he would keep me on them) - he lied and I wasn't prescribed any so I had to cold turkey off them which was painfully agonising. I was very anxious again and rang and spoke to the nurse she said no I can't prescribe against an Endo. I then rang again and spoke to a doctor and explained he said I am going to add them back and put them on repeat for nust as easy as that, which was such a relief, the thought of not having them was making more anxious.
I was then put on 10mg of carbozimole and have been on this dose since with one lot of bloods in-between which if you remember the doctor strongly stated he could tell if I wasn't taking them (I was) which confused me totally he told me I would make myself become umderactive and that would be my fault. I didn't have a clue what he meant (at this point) as I was taking the carbs. I since put about two stone on and thought I had given myself under active so panicked and came off them. I am having cold sweats, excessive sweating, up and down sleep, some nights I feel as if I haven't slept some nights I sleep like a log and wake up and sleep in between school runs. I am aching and heavy again and thought they may have been mistaken and it was the menopause as non of it made sense. Same symptoms as perimenopause or menopause, bought a test and its not theenopause so back to this.
I take vitamin D everyday. I am also anaemic so I have ferris sulphate, I also suffer with osteoarthritis and a very painful knee as I am now waiting for a knee replacement. I take calcium and vitamin c but not b12.
I just feel like I need to start again.....
The Endo didn't talk about anything really, he barely said two words other than he will keep me on Propranolol and as I said he lied.
I have seen him once and don't know what to do moving forward it may sound silly but it put me into a massive depression and I was bamboozled with all the new information and angry I had another thing to worry about. I have gone through a child custody case with the ex and he has given up last minute so it was all pointless apart from I have my children away from him so that is a bonus.
I suffered with anorexia when I was young and still frightens me to even think about putting weight on, and the doc frightened the life out of me about the overactive thyroid.
I am trying to eat healthy but still only eat porridge in the morning and a light dinner with the kids as a family mealtime. I drink water and milk and have protein shakes if I have a bad day and can't physically eater its mainly inable to swallow food, this happens more when I am stressed or scared of something I go into child mode with food again.
I hope I don't sound ridiculous 😕
I understand I can't carry on this way but I feel I am not getting any support from the healthcare side of things and family don't seem to think it's even a thing.
I will also find my results as I've made sure I received a hard copy of them all as advised on here previously.
Thanks for taking the time to read or even respond.
We are all here supporting you and understand you are having a hard time with all oh this.
Graves is stress and anxiety driven auto immune disease so all you are , and have gone through will have aggravated your health.
You need your core strength strong and solid to support you through this phase of the disease and you must try and eat nutritious food and keep your ferritin, folate, B12 and vitamin D at optimal levels.
The Carbimazole is an Anti Thyroid drug and blocks your T3 and T4 levels rising any further and after a while it's generally reduced down when your T3 and T4 levels fall into range.
Too low a level of T3 and T4 and you will have symptoms of hypothyroidism just as too high a level of T3 and you will have symptoms of hyperthyroidism.
There is a list of both hyper and hypo symptoms on the Thyroid UK website - maybe have a read and see if you can identify where you currently sit - sadly some symptoms do appear on both lists but it helps to get an idea, when blood tests are not regularly actioned.
Last results you posted showed your T3 and T4 in range and it was suggested the Carbimazole be reduced - did this happen or was some T4 added back in to your prescription so you didn't become hypothyroid.
It is ridiculous for your doctor to suggest you weren't taking the Carbimazole and caused yourself to be hyper or hypo - if your antibodies are raging they could be causing the hyper/hypo symptoms - but we do need to know which antibodies you are dealing with.
if the antibodies are raging maybe the Carbimazole needs to be increased back up a little to further block the immune system attacking your thyroid.
Please find your results and exactly which antibodies are positive and over range.
No I have never been offered any T4 I am going to book a new test in and get on top of it. I have lost voice again but hopefully will get that done today thanks everyone u make things sound so easy xx
Nothing is easy -
BUT you can help yourself stay strong by ensuring you have a strong core strength and that your ferritin, , B12, folate and vitamin D are optimal to carry you through this phase of the disease.
Please get these checked out with your doctor :
Bless you I just read your message and I wasn't aware it was stress related at all I thought it was just passed down genetically. Everyday is a school day as they say....Does the test also cover ferritin, , B12, folate and vitamin D or is this something I need to get done myself?
As you are under the doctor and endocrinologist and " in treatment " I would ask your doctor first :
It's acknowledge that when your metabolism is running too fast ( as in Graves ? ) or too slow as in hypothyroidism ( from memory your last results of T3 and T4 looked low ) your core strength vitamins and minerals can fall very quickly through the ranges and simply compound your health issues.
We really do need to see which Graves antibodies were over range and positive when diagnosed - TSI or TR ab - or what is written as the medical evidence for prescribing the Carbimazole ?
I will go dig them out I thought I had a digital copy but can't seem to see them on my phone.
No worries : don't stress : ask for copies from the doctor :
There is likely a genetic predisposition, as Graves is an auto immune disease.
But Graves can occur, or be triggered, because of a sudden shock to the system like a car accident or unexpected death of a loved one.
First we need the medical evidence of Graves and the TSI/TR ab Graves antibodies being positive and over range.
There are 2 thyroid AI diseases Graves and Hashimoto's Disease and they both start off the same way and need to be distinguished apart by antibodies.
With Hashimoto's the symptoms are transient and the treatment different - so we just need to be sure what we are looking at :
Hi Pennyannie Can I butt in and ask a question about antibodies. I was diagnosed with Graves’ in 2010. This was based on TSI antibodies being slightly raised. When you say TSI - a thyroid stimulating antibody and or a TR ab a thyroid receptor blocking antibody - are these tested with separate tests and therefore could potentially both be present or are they both ‘Graves’ antibodies but either one type or the other found but not both. ? Many thanks 🙏
There an overlap with antibodies, Graves is suspected when TSH very low & Frees very high - TSI or TRab is taken as positive for Graves.
They are separate tests.
Thyroid-stimulating immunoglobulin (TSI) stimulate thyroid and antibodies are produced by immune system.
TRab
Includes the measurement for:
TSI (stimulating)
TBII (blocking)
& Neutral (neutral)
TSI (which stimulate and activate the thyroid). “blocking” Thyrotropin binding inhibiting immunoglobulins (TBII) which very few specialist labs preform. Then there’s the “neural” (which don’t have a name as newly discovered). Not everyone with positive TRab goes hyper. Many hospital favour TSI as more accurate with Hyper stimulating - Graves. It’s still possible for the stimulating to stop & the function return or then go hypothyroid but more unusual if TRab or TSI positive.
Thank you 🙏
Ok - it seems that one or other is tested for the medical evidence and diagnosis of Graves Disease.
But yes they can both be present - either simulating or blocking thyroid hormones and there is also a middle path where these 2 extremes cancel each other out and you feel relatively well in this " stand off " of the Graves antibodies :
So, if the AT drug is at a high enough level it should block your thyroid hormones going any higher, through excess stimulation, as this is considered life threatening.
So, I presume, if your blocking hormones are dominant at diagnosis, which I mine were, the AT drug does a similar job down and blocks the blocking, at the other end of the scale.
I was on Carbimazole for around 15 months and told at my very first appointment with endocrinology that I was to have RAI thyroid ablation the following year as the AT drug was too dangerous to stay on long term.
I was fine on the Carbimazole and had a new lease of energy and life, and looking back had been hypothyroid for as long as I can remember.
I remember about a year into the AT meds I could eat for England and loose weight - the first time in 56 years this had happened to me : so I now presume that was my stimulating Graves antibodies - having taken control.
My Graves was diagnosed 4 months after I was physically assaulted and verbally abused by a man I took on as my assistant manager.
Not knowing anything and just being given a leaflet about RAI I foolishly continued to work alongside this person whilst I went through the grievance procedure with my company and true to form, as he told me at the time, there were no witnesses and eventually I decided to resign from the whole stressful situation.
My original symptoms were insomnia, exhaustion (similar to many periods in my life previously ) and dry gritty eyes which were all resolved on the Carbimazole.
I think Thyroid Patients Canada has an article on Hypo Graves / Graves Hypo :
I know it reads like a conundrum but think that was " me " for most of my life.
This attack when I was 56 triggered my thyroid to do a double somersault and at last, I got a diagnosis of something as I'd failed miserably throughout my life to get any doctor to do anything to help me, as likely my TSH never rose high enough to run further test.
Sorry, I've gone on a bit : as I understand things Graves antibodies can wax and wane throughout one's life and at some point in time, likely through stress and anxiety your immune system response is triggered and then they can " take off " and you will need medical support.
I read a lot through the Elaine Moore Graves Disease Foundation website and of course through here and Dr Peatfield's books on Your Thyroid and How To keep It healthy which is another conundrum as I haven't a thyroid now, but so relevant and now I self medicate as i was refused any help other than T4 monotherapy and needed to have a TSH in range which kept me very unwell,
P,S, I am dyslexic so please read up yourself, but fairly sure I've got most, if not all things the right way round, as also left handed and my own conundrum !!
P.S. Yes I too developed TED after the RAI - along with other long term consequences the NHS have not accepted.
Thank you 🙏
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