I am new to all of this. I am 32 and female and just under a month ago was diagnosed with hyperthyroidism. I was put on a high level of beta blockers (propranolol) and 30mg of Carbimazole daily. I am having my next blood test later on this week (4 weeks of being on the meds) and then endo consultant appt a week later to discuss.
I have SO many questions and have been reading up. I am so delighted to find this forum. What a comfort to be in touch with you all!
I have read 2 rather different books:
'Graves disease and hyperthyroidism - What you must know before they zap your thyroid with radioactive iodine' By Sarfraz Zaidi
and
'Medical Medium - Thyroid Healing' By Anthony William
Any thoughts on these? Particularly William's book - rather controversial...?!
So clearly addressing diet is extremely important (not that the GP or Endo seemed to think so!) I am still a little muddled as to what exactly to cut out and what to have more of (Basically it seems to be all the joy! - carbs, eggs, dairy, gluten, sugar, pork, soy, corn, seafood...)
In terms of Iodine for hypER I need to cut it out right?
I have started taking Vit D3 and B12 supplements.
I am keen for more tests other than just bloods...do you think I can push for an ultrasound? (I have a goiter)
I am trying to limit my work stress which I am confident will be a great help.
It's a minefield. Any comments/advice/thoughts would be so welcome. I obviously want to cut down and be off the meds as soon as physically possible. I also am looking to start a family as soon as is safe to do so too...
Thank you very much indeed.
All the best,
Hannah
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HannahStevenson
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Welcome to our forum Hannah and those members who have hyperthyroidism will respond when they read your post.
I have hypothyroidism but had to diagnose myself a few hours after the GP told me that my blood tests were 'fine'. They were anything but.
Thyroiduk is under the umbrella of Healthlocked and is independent and there are four staff doing sterling work to try to change the attitudes of the medical professionals.
First and foremost you do not need to loose your thyroid to either surgery or being zapped - there's a long way to go before you get to consider such drastic actions and hopefully you will succeed in keeping your thyroid.
The thyroid is a major gland and the body's engine and since I've never drive a car without a engine to get me anywhere, I think it wise to keep your engine if you can, as it is responsible for your full body synchronisation, your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
I have Graves Disease and had RAI treatment in 2005 and deeply regret this treatment, but wasn't given any options, though I was well on the anti thyroid medication. Living without a thyroid isn't much fun especially when you can't access the appropriate thyroid hormone replacement on the NHS.
Graves is an autoimmune disease and there is probably some genetic predisposition and something has triggered your immune system to attack your thyroid, sending it haywire.
Graves is said to be stress and anxiety driven and can be caused by a sudden shock to the system like a car accident, or unexpected death of a loved one.
Your thyroid is the victim in all this and not the cause - as the cause is your immune system attacking your thyroid causing all sorts of symptoms, some seemingly totally unrelated, whilst other considered life threatening by some people.
Your metabolism is running fast, you maybe suffering panic attacks, a thumping heart, be tired but wired, eating for England but loosing weight, having a loose bowel, exhausted, with insomnia, dry gritty eyes, and a brain constantly charging up suggesting you do more though your body feels a wreck.
The anti thyroid drugs will block your own thyroid hormone production during this first phase of the disease and your hormones will slowly start to drop back down into range, your symptoms relieved and you will soon start to feel more comfortable.
As your own hormones drop down the AT drugs maybe adjusted down so not to leave you too low in the ranges and then experiencing hypothyroid symptoms.
It is a balancing act and does need time and a skilled endocrinologist to get this balance right for the individual. Too little AT drug and your hyper symptoms may return- too much AT drug and you risk becoming hypothyroid, the other end of the disabling seesaw - as no one wants to be at either end - but somewhere in the middle where they feel comfortable.
Some endos suggest a Block and Replace treatment whereby they add back into the the mix some T4 thyroid hormone - Levothyroxine - so as to keep your T3 and T4 not going too low in the ranges.
It would be a good idea if you take an active part in this process and with every dose adjustment write down your T3 and T4 levels alongside the medication taken and also list your symptoms so as you go through this process you can actually see where you felt better within the ranges and the endo sees " you " rather than just a mathematical equation on the computer to tweak up and down at will.
I presume you have a blood test confirming Graves with either a positive TSI ( roughly translated as stimulating ) or TR ab ( roughly translated as blocking ) antibody blood test ?
The NHS tend to give a 15/18 month window for treatment with AT drugs with the intention being you will ride out this phase of the disease and it is a " one off " with remission found and you are then without any medication, symptom free, with your thyroid hormones back in range, and you being back to being " you " .
Since your metabolism is running fast there is a very good chance that you will be unable to retain or even gain any nutrients from your food, so it will be in your best interests to get your ferritin, folate, B12 and vitamin D tested as these need to be at optimal levels, to maintain your core strength, and assist your body utilise any thyroid medication you may be prescribed.
Some people do find remission, other people stay on AT drugs long term and I personally believe that this has to be the best option as it means you keep your thyroid.
I found the Elaine Moore Graves Disease Foundation website an excellent adjunct to this amazing site and just wish I knew then, what I do now when diagnosed back in 2003.
Elaine has Graves and after RAI thyroid ablation in the late 1990's found no help with her continued ill health so started researching this poorly understood and badly treated AI disease herself, and wrote a book to help others who might be in a similar position.
I purchased her first book Graves Disease - A Practical Guide about 5 years ago and started my own recovery, having to manage lingering Graves, thyroid eye disease and hypothyroidism and now self medicate with full spectrum thyroid hormone replacement that I have to buy for myself, as I was refused both T3 and NDT through the NHS.
Elaine has now written several books and runs a very comprehensive fully researched website on all things Graves for all Graves patients and their families and loved ones, world wide.
Elaine covers both mainstream and alternative, holistic treatment options and it does need " you " to spend some time looking at your life style choices, diet, and work/life balance.
There is an open forum much like this amazing forum where you can ask questions of the forum members and we all learn and listen to each other, just like on here.
You have time on your side and so much information to read and understand.
Be kind to yourself, be selfish - something that you may find difficult to do, try and relax and I fully understand all this might all go straight over your head, as your brain feels as though it has been scrambled.
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
To confirm Graves’ disease you need TSI or Trab antibodies tested ....has this been done?
For full Thyroid evaluation you need TSH, FT4 and FT3
plus both TPO and TG thyroid antibodies tested - these can be high with Hashimoto’s or Graves’ disease. Tend to be higher with Hashimoto’s
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with both Graves and Hashimoto’s
Ask GP to test vitamin levels
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 .
Strictly gluten free diet helps or is essential for many .....but as you say ....most medics think that’s rubbish
Before considering trying gluten free diet get coeliac blood test just to rule it out first
Thank you so much! So useful. I will make sure to go early on Thursday morning for my bloods. Is it ok to have the meds in the morning before the test or not? Thanks, Hannah
Carbimazole works by stopping iodine being converted to a usable form for the thyroid to make new T4 & T3. So supplementing iodine not recommended, it’s highly unlikely you would be deficient. As the body uses up the existing hormones already in your system you will feel much better. In theory this process can take up to 8 weeks, but most feel better much sooner. So it good they are retesting you so soon & you may be able to reduce dose. Repeating, regular testing will be important as dose adjustments can be required to ensure you remain at the right level. You will feel symptoms if you remain too high and if you fall too low. Make sure you are dosed by FT4 and FT3, not TSH. I’m tested 6 weekly which is standard.
alway obtain a copy of any test you have had. (ask for an actual print out as you need the ranges which differ depending on the lab). You need to know what’s been tested as GPs do not always do a full thyroid function, antibodies or test key nutrients. Then post on here. Were you found to be low in vitamin D & B12 in a previous test?
GPs tend not to pay much attention to goitres & prefer to look at blood tests results on a screen, so unless you mention if its affecting your breathing, swallowing or voice they are unlikely to send you for a ultrasound. An ultrasound looks at the health & size of the thyroid and will detect any nodules which are very common, even in those without thyroid disfunction. It can indicate if you might have thyroiditis or Graves but to conclusively determine you would need to have a antibody blood test. What’s antibodies have you have tested?
Propranolol is often stopped when your levels are in range. Were you advised if the propranolol was temporary? My specialist told me to stop taking my 120g daily dose abruptly, but it must be reduced slowly when you don’t need it anymore. propranolol is known to have a mild anti thyroid affect and can lower FT3 so helpful when hyperthyroid.
Are you aware of PTU Propylthiouracil. This is a anti thyroid that women are switched to during pregnancy. I’m not well informed about it but you might want to research it and discuss with your specialist.
Thank you very much for your extensive reply. I so appreciate it.
I am taking 6 tablets a day of the propranolol so 240mg in total. A lot right?? They doubled the dose after 2 days as my heart rate was still up at 120. I assume I will come off as the thyroid gets more under control. I will make sure to reduce slowly as you say though..
Also very useful to know of the PTU Propylthiouracil.
I am speaking with my doc tomorrow so will ask all about vitamin tests etc.
Do you spread out the doses evenly throughout the day?
Your doctors must have you on a maximum dose as your heart rate is still high. Are you able to take & record your heart rate. I have a tracker and it good to keep a record. You can compare it to you blood results. I do this and can see a pattern heart rate low when FT3 low higher when rising.
I think the most important thing you’ve suggested is cutting down on stress. If you manage to spot when you’re feeling over-stressed and find ways of dealing with it (could be simple stuff.. a walk in the fresh air, yoga, some beautiful music...) you will feel so much better, and perhaps even that you have regained some control.
I wouldn’t worry about diet too much at the moment. Chances are you will be eating lots but not putting on weight, and you will also be pretty tired. If anything, try to cut down on highly processed food, and make sure you get get enough fruit and veg, and high quality protein - so standard ‘healthy diet’. You really don’t need the stress of trying anything more difficult at this point. No reason to give up
Iodine, assuming you aren’t planning to go overboard ... and no reason why why you can’t include the typically-recommended portions of fish. If you’re eating.actual seaweed several times a week, perhaps rethink your balance. As your thyroid levels stabilise, it will be a good time to reset, especially as some of us find we gain weight at this point. Trying out a low-carb diet for a few weeks can be an opportunity to try Gluten Free - it made no difference to me in terms of my thyroid, although I did lose weight.
Once your thyroid levels are in range, you are likely to have a few months on a relatively low dose of carbimazole and (unless you remain on a high dose of carbimazole supplemented with Levo - block and replace) you will have at least some idea as to whether your thyroid is responding. This is the time to research long term carbimazole, RAI and thyroidectomy. All things being equal, if we didn’t achieve remission, most of us would probably opt for long term, low dose carbimazole, but some people find their thyroid levels don’t come down enough or aren’t stable, while others may be in circumstances where the extra additional testing required creates difficulties, or be planning to start a family. People here can point you to the research, but the decision needs to be right for you and only you can know that.
Many of us have swollen thyroids at first diagnosis. My voice would get very squeaky if I tried to raise/project it at all. By all makes mention it to your GP, especially if it’s causing breathing probs (separate from the breathing probs you get anyway with being hyper, which will probably be helped by the propranolol), but they are unlikely to do anything until your thyroid levels have had the chance to settle a bit, because at that point the swelling will usually reduce too.
You do need to know why you are hyperthyroid, so ask your endo why he is sure of his diagnosis and what treatment he proposes. Generally, if you are hyper, you should have either TRAb or TSI tests for Graves’ antibodies, or a scan.
This is likely to be a long haul - good luck, and be kind to yourself.
I wouldn't even buy it. I would prefer to read information from people who don't suggest they have some special skill in contacting spirits and that these spirits know more about medicine than anyone else.
Just google "medical medium quack" and see what comes up.
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