I was diagnosed with Graves when 14 weeks pregnant in September 2017. My TSH was and still is completely supressed 0.01. They managed to regulate it during my pregnancy and discontinued when I was 36 weeks. Had a normal uneventful delivery. I didn't have an appt for my endo until 12 weeks pp.
When my daughter was 9 weeks I developed thyrotoxicosis. I had heartbeat of 230+ bpm consistently for 4 hours before going to a+e. Needless to say for anyone who's experienced it it's a very frightening ordeal.
I've been on various doses of carbimazole and am currently taking 20mg per day. In the last month I've had bouts of the rapid heartrate over 200bpm and my resting rate is around 100. I'm taking a beta blocker too.
My levels don't seem to be normalizing. My last bloods 4 weeks ago T4 was 24.8 and TSH is still completely supressed. My endo is really crap. She's been pushing me to have surgery for the past 8 moths and I'm due to see her again in a couple of weeks.
I'm really at a loss now. I'm so fatigued, depressed and anxious all the time.
I recently have excrutiating pains in my knees. I've noticed a large lump under some scar tissue. Can this be part of the Graves?
Sorry this got so wordy, I just feel so lost and alone in this illness. Can anyone give me some help or guidance?
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Madyolk
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Graves is an auto immune disease and as such it is for life, its in your blood, your DNA.
There is probably some genetic predisposition and read it can be triggered by a sudden shock to the system like a car accident or an unexpected death.
Graves anti bodies attack the thyroid, and you may experience many confusing symptoms, some said to be life threatening. Your thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being.
In the first instance the job is to bring your TSH, T3 and T4 into range with anti thyroid medications, and carbimazole is generally the first drug chosen though there is also propylthiouracil, commonly referred to as PTU.
Within a period of about 18-24 months it is expected that you will have come back into range and there maybe conversations of block and replace, and or, remission.
It can be a very challenging finding the right balance of meds during this period, it takes time and much skill on the part of the endocrinologist. It's a balancing act, like many things in life, and ideally, your meds should be adjusted to give you back a level of well being. Neither hyper, or hypo, but balanced and giving you back, " you " .
I read of people on long term ATDs, on a minimal dosage, and getting on with their lives.
All efforts must be made to work on keeping your thyroid, as living without a thyroid isn't much fun for many people, especially when we aren't able to access the relevant hormone replacements we need through the Nhs.
The Nhs do not know how the control the autoimmune component of this disease, and the thinking is that if they can't bring it under control with the ATD the answer is to remove the target of the attack, the thyroid. This is somewhat simplistic, but this is what happens.
If, it is deemed by you that the medication isn't working and your quality of life seriously long term compromised then surgery maybe the way to go.
Please do not consider RAI as it is a toxic substance that you drink, is known to be absorbed by other glands and organs in the body, and can cause thyroid eye disease, surgery is the better option, it's clean, concise and contained ".
Can you ensure that you have tested positive for TRab and or TSI Graves anti bodies ?
You might like to take a look at the following :-
Graves Disease A Practical Guide - by Elaine Moore. this lady has the disease and found no help herself when going through Graves treatment in the late 19990s so wrote this book. She has now devoted the rest of her life helping others with Graves. It is stateside, so medical protocol maybe slightly different but her website is well researched and respected. There are sections on alternative treatments options, diet and life style choices, and an open forum very much like this excellent website, for all Graves people for all things Graves.
Professor Toft the eminent endocrinologist recently wrote that he is reluctant to suggest thyroid ablation with iodine 1-31 or surgery to his graves patients because of the lack of care and management in primary care, and is suggesting they stay on ADTs irrespective of their age or number of recurrences of hyperthyroidism.
Thyroid hormone replacement - a counterblast to guidelines - Journal of the Royal College of Physicians of Edinburgh - December 2017. The full article is on this website :
Thank you very much for your thoughtful reply and the information which I will definitely look into.
My endo just keeps dismissing how I'm feeling and in fact told me not to go back on meds when I was post partum which then led to the TT. She never told me that I was at a high risk of this happening after having a baby. This makes me very distrustful of her.
I have said no way to the RAI. I have a 1 and 3 year old and it's just not a viable option for me. I'm very reluctant to have surgery because, that comes with a whole other set of issues, lifelong ones at that. I will ask her about block and replace though. I was never told that this was an option.
I don't feel that she's given me the option to try and find the right balance of meds and is not giving me enough time. She said that being on the carbimazole long term will lead to osteoporosis and heart disease. I haven't been able to find a lot of reliable information about the long term effects of the ATD but I do want to give it some more time.
The scar where the lump is, is under on my left knee. I'm probably just over anxious about it but i thought this would be a good place to put it!
Osteoporosis and heart disease seem to be bandied about for all thyroid management issues by doctors. It seems like a standard line when medication doesn't give the desired result, with patients just wanting to feel better, whether with or without a thyroid.
Yes, you are right, simply swopping one set of symptoms, hyperthyroidism, for the total opposite hypothyroidism, isn't ideal, but that seems to be what happens, as the Nhs believe hypothyroidism is more easily treated ? Similarly, if hypothyroidism isn't managed properly with the appropriate thyroid hormone replacement there are also the known health risks of osteoporosis and heart disease.
The Nhs is target focused and medics are paid to move the out patients through as quickly and as effectively as possible. There is this " time frame " to find an answer with ADT's and then the next conversation is all about removing this major gland.
Can you ask for a second opinion ?
Read all you can, I understand this in itself will be difficult with two lovely little ones, keeping you on your toes.
P. S. I'm with Graves Disease diagnosed in 2003/4 and given RAI in 2005. I am now 72 and am dealing with Graves, thyroid eye disease and hypothyroidism and am self medicating, having to buy my own thyroid hormone replacement after being refused a trial of T3 on the Nhs last year.
Try some l carnitine to lower your thyroid hormone levels... they give it to hyperthyroid cats and dogs. It enhances carbimazole's effectiveness and in tests it can prevent thyroid storm. Look it up. Also inform the Endo if it helps. They are often quite ignorant of nutritional aids.
The housemaid's knee ( bursitis) is something I had with Hashi's flare ups... not sure if it is the same thing for you, but it is often caused by autoimmune illness and does relate indirectly to heart issues which carnitine can really help with. I also recommend taking Magnesium ( probably best to apply transdermally) to help with joint pain and tachycardia. Better You gel and lotion is good. Keep a wary eye on vitamin and mineral levels as you use them up very quickly when hyper. The Thyroid UK website has a list of the ones you need to check.
Hi Ling, thanks for your reply. No, I don't believe they were tested recently? I'm going to get the full report from my GP tomorrow. My T4 has come down to 21.8 which is good but TSH, predictably I suppose, is not moving.
I would have thought that I'd start feeling better with the T4 lowering but that doesn't seem to be the case unfortunately.
I have my appointment with the endo tomorrow and I'm going to see what she says about block and replace. Any advice on questions to ask her or points to make to her?
Do you have TraB or TSI results from initial diagnosis in September 2017?
I can't seem to see the ranges for your blood test results. By any chance do u have them?
Are there results for FT3? This could be important in your case.
Is it correct that despite being on carbimazole since end 2017, you are still having the high heart rate episodes?
Were you on higher carbimazole doses earlier on than the present 20mg? If you were, and had been titrating the carbimazole lower, could that be why the high heart rate symptoms have returned?
The biggest worry is that the heart rate goes so high. It potentially puts your heart at risk of heart failure and rhythm problems.
Block and replace. From the little that I've read, it does not produce better results than carbimazole therapy alone. But do discuss it with your endo and see what she has to say.
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