Buddy195Administrator5 months ago

So many of us have been scared and overwhelmed with a thyroid disease diagnosis, but this forum is a godsend and you will get great advice and support here JoanneE1.

Have you had thyroid antibodies checked?

Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI. It’s so important to have these tests, as I was wrongly diagnosed as Graves, when I actually had Hashimotos (underactive)

JoanneE1 in reply to Buddy1955 months ago

, Buddy, Hi thanks for replying. I think that is what I will be having when I get the hospital appointment. The doctor wanted me to start treatment immediately rather than wait the 4 weeks for my endocrinology appointment.

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Buddy195Administrator in reply to JoanneE15 months ago

As your levels are high I would personally start the treatment but insist that the necessary antibody tests are taken asap.

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JoanneE1 in reply to Buddy1955 months ago

OK thank you, I will contact the GP. Do I just say 'antibody tests' or is there a specific term?

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SlowDragonAdministrator5 months ago

Your Ft4 and Ft3 are pretty high ….so starting Carbimazole will help reduce levels

Has GP also prescribed propranolol

Or do you have asthma?

Have they tested vitamin D, folate, ferritin and B12 levels

Are you signed off work?

JoanneE1 in reply to SlowDragon5 months ago

I had already been taking propranolol so am still on them. My ferritin was over 100 as I had an iron infusion a couple of years ago as I also have Crohns disease. They didn't mention the others. I've been working throughout and getting sicker by the day (I'm a Higher level teaching assistant) but yesterday the GP told me to take a week off and I informed work today. I've tried so hard to keep going but I feel like people don't understand how it actually feels.

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Mijmijkey74 in reply to JoanneE15 months ago

🤗

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Hennerton5 months ago

I know exactly how you feel, as I was eventually diagnosed with hyperthyroidism but not until I had spent five months going back and forth to various GPS, one of whom suggested I buy an ioniser for fresh air in my house. My levels were higher than yours but I am sure you feel just like I did.

My best advice is be your own doctor and learn fast from this forum, which is truly amazing. Always ask for copies of your blood tests, check results yourself and learn what is a good level for you to feel normal. My levels were very erratic and after almost a year of up and down results I decided on a thyroidectomy, which was a big mistake. I wish I had tried harder to balance the thyroid levels but I knew nothing and am not sure this site existed at that time. My doctor was hopeless and knew nothing. My private endocrinologist was equally useless.

That is the bad view of it but you will be fine, because you will have support here. One of the admins will answer your post and give you advice on what to do next. Keep asking and follow their advice. Good luck!

JoanneE1 in reply to Hennerton5 months ago

Thank you so much for your reply. I understand what you mean. My GP had been totally useless insisting that my HR was anxiety. It was only by me turning up at the surgery in tears and almost collapsing that I even got the blood test done. I hope you are well.

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Buddy195Administrator5 months ago

I was teaching when I was first diagnosed and was given great support by my union.. When I returned to work I had a tailored adjustment plan to make workplace modifications. I have Thyroid Eye Disease so needed dimmer lighting/ a larger pc screen etc. I would reach out to your HR team/ union for further advice about school based support.

Buddy195Administrator5 months ago

 Graves Disease needs to be confirmed via positive TRab or TSI: 

TRab TSH receptor antibodies 

TSI Thyroid-Stimulating Immunoglobulin

JoanneE1 in reply to Buddy1955 months ago

Hopefully I will get these tests done soon. I'm taking notes of all your information, Thankyou.

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PurpleNailsAdministrator5 months ago

Some further information on antibodies.

GP usually test for 2 main antibodies.

 TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies) 

The trouble is these are usually very high with Hashimoto’s, & also often present with Grave. 

 So they confirm autoimmune but not specifically Graves. 

If Graves’ disease is suspected a specialist can arrange a test of 2 other antibodies.

Thyroid-Stimulating Immunoglobulin (TSI)

(TRab) TSH receptor antibodies - (measures stimulating, neural & blocking antibodies)

Some hospitals favour 1 over the other, but positive result of either TSI or TRAb is evidence of Graves.  

My antibodies wasn’t run until the 3rd set of test nearly 3 months after being started on carbimazole.

40mg is a higher level of dose.  

1) is the dose split throughout the day?   This can be helpful. 

2) Has a repeat blood test been set up? - this should be no later than 6 within weeks.  

Its very important to monitor FT4 & FT3 and adjust dose.  Often carbimazole will needs to be reduce to stop levels going too low.  

TSH can take a long time to respond so FT4 & FT3 need to be the guide., doctors tend to focus on TSH. In some cases the TSH permanently stays low.  

JoanneE1 in reply to PurpleNails5 months ago

I have to book a blood test in 4 weeks and fingers crossed I will see a consultant at the hospital by then. The carbimazole is 20mg twice daily. This is so much to take in.

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Buddy195Administrator5 months ago

Just wanted to reassure you, so many of us felt overwhelmed when first diagnosed. It’s impossible to take all the information in at once. I found it useful to record my symptoms and dosage of medication in a journal, then I could share this information with my endocrinologist and look back later to compare results. You will feel so much better when your thyroid medication and key vitamins (ferritin, folate, B12 and vit D) are optimal, but please don’t supplement until you have tested levels first.

Go easy on yourself and keep posting if you have any questions or need further support; we are a friendly bunch and are here to help! 🦋

JoanneE1 in reply to Buddy1955 months ago

Thank you so much Buddy.

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Mijmijkey745 months ago

That's disgraceful treatment they have displayed towards you. So they had you on HRT and then got your blood test results back discovered you have hypothyroidism and knew you were on HRT and shouldn't have been with the hypothy diagnosed in your blood test results yet didn't it appears tell you about the blood test results and didn't contact you to tell you to stop HRT or that they had stopped it and with explaination as to why? Is that correct? Disgraceful of them if it is. And them previously dismissing you. They do try to label fast heart rate on anxiety it is their favourite excuse not to follow through and up on their patients and instead fob them off. A higher heart rate when moving about is normal. It depends what your resting heart rate is usually. My resting heart rate can be over 130 bpm. I feel my heart pounding when I move about and it has been significantly past 210 bpm when I'm moving/just that moment stopped moving. If you feel concerned and berated/belittled/dismissed/not taken seriously I do understand and can only suggest you don't get stressed and do ask to be referred to cardiology cardiology for tests and ask your gp to do your resting heart rate to settle your mind. There is a blood test you can have done that is highly accurate in detecting heart failure. You can just go to out of hours doctor at local hospital if you are genuinely concerned and not feeling well or safe. A&E is another option. As for your results ask your gp/doctor or any gp/doctor to explain them clearly to you. If their is a gp/doctor at your local practice that you prefer to your own then request an appointment or a call back even from them to discuss your results with you more clearly. There is I should point out absolutely nothing wrong with anyone having anxiety but their is everything wrong with gp's and doctors so frequently trying to pin a faster more rapid heart rate on anxiety and just not taking their patients seriously and dismissing concerns as if they are dismissing whining children. Patients know their own bodies best and do know how they feel isn't right and isn't anxiety or depression or to much caffeine related. As racing heart rate/rapid heart rate can be increased by caffeine consumption and smoking. Good luck.

JoanneE1 in reply to Mijmijkey745 months ago

You're absolutely right about them not contacting me. It was only because I contacted them about swollen legs and feet that they told me about the thyroid results. I've been fobbed off for years and hope they haven't caused me permanent damage. I didn't even have my BP taken or see a doctor but he gave me HRT over the phone. It's disgusting.

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Mijmijkey74 in reply to JoanneE15 months ago

Apologies about those their's and their in certain places when they should be there and there's. That truly is my (on its last legs) phone creating havoc and lag.

Sorry you have been fobbed off for years (by the NHS?) it won't surprise me and seems commonplace behavioural practice unfortunately. I am still after more than 6 years being fobbed off significantly and fed utter nonsense they are then floored when I won't swallow it nor put up with it.

Before they started you on HRT they should have ran blood tests which included check on your thyroid. Along with having given you a full mot that includes heart rate (actual listening to your heart, bp and cholesterol) had you already had those blood tests done a significant amount of time ago when he gave you HRT over the phone? Am wondering if your results were back and for whatever insane reason he decided that although he did already possibly know you have a thyroid problem that HRT without bp having been taken was absolutely fine. It wasn't and I wonder if he was using any of your past bp readings on file/in the system to make his judgement. Though for nobody to let you know in any way that you have hypothyroid issues is flabbergasting and shocking. I do seriously hope they haven't caused you any permanent damage health wise. That you do need to ensure you follow up on with a full mot and perhaps not through the NHS who are becoming increasingly sloppy which is dangerous and challenging for patients and putting patients at risk. All these telephone consultations where people are not checked, but diagnosisis are given along with prescriptions for things that may be completely wrong. Have you since had your bp taken and heart listened to/scanned etc? It is disgusting you are right. Any treatment/medication offered over the phone and it isn't something ever had before and fairly recently decline it stating wanting a full check up first and bloods before starting. I cannot understand why they hid that very important information from you about your thyroid. You could have become desperately poorly and nobody knew why quickly enough to treat you or anyone whose had important medical diagnosis information withheld from them and died. Especially if wrong treatment/medication has been prescribed and being taken that shouldn't be taken with a certain illness/condition the patients are unaware they have as kept from them. That's so dangerous. Was it during Covid lock down that he gave you the HRT prescription over the phone? If you are not happy with a phone consultation/appointment or a video one, you can request face to face. They will try fobbing off in favour of phone/video but insist face to face. You know all this already, don't want you to feel I'm being condescending. Good luck. x

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pennyannie5 months ago

Hello Joanne and welcome to the forum :

Once the Anti Thyroid drug kicks in you will feel more comfortable and this 'heightened state ' you find yourself in will disappear - are you taking Carbimazole ?

Please read the PIL - patient information leaflet - and if it doesn't suit you there is an alternative referred to as PTU - Propylthiouracil.

Graves is an auto immune disease and something has triggered your body to attack itself and when Graves attacks the eyes and thyroid you need medical intervention as the symptoms can be extreme and quite scary.

I guess you are thinking why you - I know I did - and you might like to think about your work/life balance and any stress and anxiety that has been going on for some time.

The most well rounded of all the websites I found was that of Elaine Moore's Graves Disease Foundation elaine-moore.com and found the sections on alternative, more holistic complementary therapies and treatment options very interesting.

The thyroid is the body's engine and the controller of your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

All the AT drug does is buy you time and blocks your own thyroid hormone production and the hope is your immune system response calms down and your body resets itself.

The NHS generally allocate around 15-18 month window with the AT medication and throughout this time blood test are run often and as your T3 and T4 slowly fall back don into the ranges the AT drug titrated down - otherwise you risk your T3 and T4 falling too far through the ranges and experiencing the equally disabling symptoms of hypothyroidism.

The most recent research however is suggesting that the longer the patient stays on the AT drug the better the outcome for the patient : pubmed.ncbi.nlm.nih.gov/338... so pop this under your pillow for possibly sometime in the future.

So, a bit like being on a seesaw and needing to adjust the balance of weight so both parties can respond and enjoy the exercise as the AT drug is adjusted to a happy medium where T3 and T4 are balanced in the ranges and you are not stuck down in the mud or up in the air and unable to get off.

When metabolism runs too fast or too slow it seems our core strength vitamins and minerals can nose dive, and compound our ill health, so you also need to get ferritin, folate, B12 and vitamin D run as these need to be maintained at optimal to help you through this phase of the disease.

If your eyes feel sore, and dry though watering there are many OTC products that can relieve symptoms, - just make everything you use is Preservative Free.

These symptom will pass, it is a difficuit time, but it will pass -

You are not hopeless but likely just needing things explained and probably now in information overload -

so just go one step at a time and ask any questions,

do not worry, get singed off from work, and rest your brain and body and try to turn off with whatever past time or hobby you enjoy and be selfish with your time and look after your ' you ' .

JoanneE1 in reply to pennyannie5 months ago

Thank you so much for your reply. I'm hoping I can find the PIL for carbimazole online as was never given one with my prescription.

I guess I'm happy that the cause has finally been found but I'm also so angry that the GP never listened for years. Did it take a long time before you felt better?

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helvellaAdministrator in reply to JoanneE15 months ago

Not making sure you have the Patient Information Leaflet for a medicine like carbimazole is malpractice.

You can find several here (might be all UK makes but there could be some which do not submit their PILs to this site - they will be close to identical):

medicines.org.uk/emc/produc...

Also see my notes about Anti-Thyroid Therapy:

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

Please don't get put off by the number of pages!

Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information, an Appendix of links to many useful websites.

And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again. (You must download - not just view in a browser- for the Table of Contents to work.)

In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.

If there is anything you'd like me to add, let me know.

Current Topics

• Anti-Thyroid Therapy

From Dropbox:

dropbox.com/s/vp5ct1cwc03bl...

From Google Drive:

drive.google.com/file/d/1P9...

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pennyannie in reply to JoanneE15 months ago

I was diagnosed back in 2003/4 and I took a week off work and then went back BUT back into the issue that likely triggered my immune system response !! ??

Briefly, a man I employed as my assistant manager physically threatened and verbally abused me one evening when we were closing down the unit and he made sure there were no witnesses - long story short going through the grievance process with my company was a ' joke ' and I resigned 6 months later and the unit closed down.

So, anyway, I was told at my very first endo appointment that Carbimazole was too dangerous a drug to stay on long term - and that I was to have RAI thyroid ablation the following year - I knew no different and was totally compliant as being dyslexic not inclined to read anything, let alone a medical paper or twelve.

Interesting as now we have the research - which I sent you yesterday - advising the opposite - pubmed.ncbi.nlm.nih.gov/338... and further to that we now have this research - ncbi.nlm.nih.gov/pubmed/306... which I hope helps remove RAI as a treatment option in a health care setting for an auto immune disease - though I shan't hold my breath.

I became very unwell in around 2014/16 - ( see profile page ) and this was when I started reading up on Graves Disease through Elaine Moore' first book - Graves Disease - A Practical Guide and then purchased a laptop, found this amazing forum and a few other websites, and have had to become my own best advocate which has meant I now self medicate and buy my own full spectrum thyroid hormone replacement and am much improved, as is my dyslexia.

Take good care, everyone's journey with Graves is unique to them - it's early days and let's just get the medical evidence of which antibodies were over range and positive at diagnosis and please ensure your core strength vitamins and minerals are maintained at optimal levels to help support you through this first phase of the disease.

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PurpleNailsAdministrator in reply to JoanneE15 months ago

The pharmacist is obligated to supply manufacturers PIL.  

Some have allergies to certain ingredients & information is often updated so it should be dispensed with each type every time. 

They are relaxed on it & really shouldn’t be. 

 I have 2 alternating doses so often have varying brands.  

I’ve also had lose pills dispensed with “mixed brands” written on jar.  

so could be taking 4 different brands in 1 week.

If you know the brand you should be able to locate PIL.  

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Bubblesgold75 months ago

Hi JoanneE1, I'm so sorry to hear you've suffered so badly with hyperthyroidism, and I've FINALLY been diagnosed, yesterday, with hyperthyroidism, for a very much long-awaited full blood test to check my thyroid; as I've been unwell with it for the past 9 years!! When having a thyroid blood test at my local GP's they only offered the BASIC one for TSH!! I saw a consultant who had listened to me, and I got a thyroid blood test to cover for TSH, T3 and T4. I couldn't believe I've been diagnosed with hyperthyroidism; as I thought I had a sluggish thyroid with all the sluggish symptoms I've suffered from! Feeling extremely exhausted during the day, and falling asleep for 3-hours every afternoon. Sweating profusely on my face and neck, after doing simple chores around the house; such as hoovering, ironing, and cooking; as if I had run a marathon. Not sleeping well at night, heart palpitations, breathlessness etc. Itching on my back! I went through the change at the age of 47, and I'm now 61! I'm now waiting for my heart consultant to refer me to an endochrinologist who specialises in thyroid problems! I'm now awaiting what type of medications I will be taking. I've always had a tendency to suffer from anxiety, since a child, and I put this down to being hereditary, sleep problems for the past 17 years, whereby I can't sleep through the night. I've been diagnosed with the Epstein Barr Virus (EBV), that has escalated all my symptoms in the past six weeks, and also weakness in my upper arms!! As I was away looking after my elderly mother, I was doing all the shopping and housework, and I was suffering with all these symptoms even more! I wasn't able to see a doctor in Jersey, as a 'visitor' as there are a shortage of doctors there, and I finally saw an amazing alternative health practitioner. Who suspected I had problems with my thyroid and she gave me supplements: Herbs of Grace, Thyrobal, taking 2 capsules, 3 times a day, and Pure Seaweed (Dr.Seaweed's) weed and wonderful, taking 2 capsules in the morning, which has helped me tremendously, and for the past three weeks, I'm awake all day long! Please check with your endochrinologist, before taking them, and I don't know if you live in the London area? If you do, I can recommend this wonderful, alternative health practitioner, who works in Jersey, CI, and London. This is understandable you feeling scared and overwhelmed, and with taking the right medications that suit you, you will feel a different person, and for your safety as well.

Bubblesgold75 months ago

By the way, JoanneE1, I forgot to mention I've now had the full blood test for my thyroid problems: TSH, T3 and T4, which my GP's only offered the basic Thyroid test TSH, which in the past came back as NORMAL, when I instinctively KNEW I had a problem with my Thyroid!