If there is no obvious swelling of the throat and no issues of swallowing or breathing the issue is likely 1 of 2 auto immune diseases which both start off initially with the immune system attacking the thyroid and causing over range T3 and T4 readings and a TSH stuck down below the bottom of the range.
Have you any further blood tests results there - detailing which antibodies were found positive and over range in the blood ?
The anti thyroid drug - Carbimazole - simply puts the patient into a holding position - while we wait for the immune system to calm down - a bit like an aeroplane waiting to land -
and semi blocks new daily thyroid hormone production and slowly these over range T3 and T4 readings will fall back down into range and hopefully symptoms alleviated.
An AT drug is generally prescribed when Graves Disease is confirmed by the unique antibodies for Graves - and these are generally written as either a TRab - a thyroid receptor blocking antibody or a TSI - a thyroid stimulating antibody.
Graves is considered life threatening if not medicated with an AT drug and generally speaking the NHS allocate a treatment window with the AT drug of 15-18 months during which time it is hoped the immune system calms down, the T3 and T4 fall back down into range and the thyroid ' resets ' itself without the need of the AT medication.
There can be other antibodies in the blood which drive up thyroid hormone production - generally written as a TPO / TgAB and if these are confirmed as positive and over range we are probably, looking at Hashimoto's thyroid disease. There is no medication prescribed for this AI disease as the T3 and T4 fall back down into range themselves as this disease is transient in nature and progressively damages the thyroid over a period of time with the patient ultimately becoming hypothyroid and requiring medication.
When metabolism runs too fast as in hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key nutrients through food no matter how well and clean one eats and it is vitally important that in any state of ill health we keep our core strength strong and solid to support us through -
so suggest we get ferritin, folate, B12 and vitamin D run as these need to be maintained at optimal - which we can advise on - once we have the information.
You might like to suggest your daughter joins the forum - as working through a third party gets confusing for everybody - what symptoms is she dealing with and are her eyes involved at all, dry, gritty, watering, pain - if so please ensure any lotions or drops she uses are Preservative Free - even those prescribed.
You can find more information on all things thyroid on the Thyroid UK website which is the charity who supports this open, patients to patient forum. thyroiduk.org
If we are looking at Graves Disease the most well rounded of all the research I made into Graves Disease is that of Elaine Moore's books and website - elaine-moore.com
We do now have some research which you may like to read and save for later in this process if Graves Disease is confirmed.
Hi, thank you so much for your response. My daughter is 27 and is very overwhelmed by this recent diagnosis. Once she has processed it I shall ask her to join. This time 6 months ago her folate was 2 so has been supplementing.
Can I start her on other supplements? A good multivitamin?
The dr hasn't tested antibodies yet but she has a blood test booked on 28th so I shall ensure that these are added on.
I think the answer to the above already covered below - in all honesty one should not be supplementing anything until one is tested for the said vitamin or mineral and then if necessary AI graded supplements should be individually taken and tracked through further blood tests down the line.
Yes, Graves is a poorly understood and badly treated AI disease though there can be a genetic predisposition, maybe a generation away with someone with a thyroid health issue and can be triggered by a sudden shock to the system - like a car accident, or the unexpected death of a loved one - mine was diagnosed a few months after being verbally abused and physically threatened by a man I had employed as my assistant manager - but I knew nothing back in 2004 and just trusted the medical profession knew best.
I was already ' running on empty ' for want of a better description of my health and now realise I was already undiagnosed hypothyroid and was experiencing insomnia which I couldn't shake off and just 1 visit to the the doctor and 2 / 3 days later diagnosed with Graves.
You may well find the antibodies were run- they just take a day or two longer to come through from the lab - so they may well be on the computer if your daughter has online access to her medical records - and if she hasn't - suggest she registers for this at her doctors as then she can view at her convenience rather than keep asking the likely overworked receptionist questions and likely getting verbal replies which are liable to human error.
As her T3 and T4 start to fall back down into range the AT drug should be titrated down accordingly as if her levels of T3 and T4 fall too far through the ranges she risks the equally disabling symptoms of hypothyroidism.
The goal is to treat with as little AT medication as possible and hold her T3 and T4 at a level that keeps her as well as possible - neither hyper nor hypo - while we wait for her immune system response to calm down.
Hi, thank you for sharing your story. My mother died at 46 - no known thyroid issues and none on her dads side.
In all honesty my daughter has never been able to sit still and keeps herself busy as a way of dealing with things but can crash.
Very slim, works very hard, shes slightly shaky, dizzy, tired, predisposed to anxiety but full of life. She started going to the gym 8 weeks ago but got covid. She lost 12 pounds that she cant afford to - shes a size 4
She went to the drs as she felt dreadful even after a few weeks. This is when we got these blood results.
Her blood results were similar 6 months back so I do wonder how long she has been like this though.
I shall push for the antibody tests before she is diagnosed as hyper.
Should she take the medication still until those tests?
Thanks again for all your help
All your messages have made us feel less alone, thank you
Well Graves can be life threatening if not medicated - and the medication is an Anti Thyroid drug - either Carbimazole or Propylthiouracil ( PTU ) for short :
There should be a PIL - Patient Information Leaflet with the Carbimazole and I was advised to gostraight to A & E should I develop a sore throat -I didn't - the AT drug worked very well for me, my symptoms were relieved and thought my situation resolved.
Presumably she has horrible symptoms that need alleviating and once on the AT drug and her T3 and T4 high levels start to lower and fall back into the ranges she should feel more comfortable.
She needs to rest and try and turn off - mentally and physically - though know more easier said than done - I presume she is off work and being kind to herself ?
Hi, thank you. She's a soldier I'm afraid and she doesn't know how to relax. She's a true carer with a young boy and a teenager. I shall have a conversation with herThanks again 🙏
Okey then - glad to have helped a bit - and ask away anytime -
If you get a bit lost on this forum - reading other peoples posts etc - just press your Profile icon which on my laptop is top right on this screen - and on my mobile phone bottom left - and that takes you back to your original posts and all your replies.
They may well already be there - on the hospital and hopefully doctors computer print out - as the AT drug should not be dispensed until there is the medical evidence and proof of diagnosis and medical need.
Well as explained in my first reply to you - a goiter could cause the thyroid to go into ' overdrive ' - but if there are no physical symptoms of a visual swelling around the neck area or trouble swallowing - the chances are we are looking at an AI disease - either Hashimoto's Thyroiditis or Graves Disease which both start off the same way.
Hashimotos is transient and not treated with an AT drug and the only way to know what is going on is by which antibodies are positive and over range in the blood at diagnosis.
I had roughly the same figures as your daughter with no obvious goitre and antibodies found.
Even though no obvious goitre it was later found that I had a multi nodular goitre. I was put on Carbimazole which actually contraindicated with medicine I was on so had to be regularly checked. When they tried to take me off the Carbimazole the TSH crashed.
It’s a long sequence and drawn out with my thyroid removed a few months ago and seeing as the fantastic surgeon cut two of my parathyroids out and cut the blood supply to the other two I now have a lifelong problem with calcium balancing.
Although we shouldn't scare anyone about the Thyroidectomy (surgical removal) or RAI (destruction of thyroid gland by administering radioactive Iodine by medical professional), these should be considered by every patient individually and research is vital.
My wife (she went through Graves disease with high antibodies and thyroid storm) decided not to go with either option and eventually she got off the Carbimazole after few months, had gone into remission and she's back to having cold feet and all other Hashimoto's symptoms.
Back story:
She's had Hashimoto's (thyroid underactivity - with antibodies confirmed by blood tests) for at least couple years before the thyroid storm occurred.
The UK based GP doctor kept prescribing her thyroid replacement hormone (T4 only) for at least couple month after she already complained about racing heart, being drenched in sweat during sleep, bulging and red eyes as well.
GP didn't believe her and had been doubting that sending her to endocrinologist is a right way to do.
Eventlually we flew to Poland and she was prescribed thyroid blocking medication as well as beta blockers to calm the heart.
Glad we did it as her resting heart rate was over 100 and easily going over 190 during exercise. Like that for months before we got help.
After coming back from Poland (been there just over a week) she had to take on the fight with GP back in the UK to be eventually prescribed before mentioned Carnimazole.
Around 8 months after her T4 and TSH were back to normal so she got taken off Carnimazole and offered a choice of RAI or Thyroidectomy.
I have to stress this enough, sometimes these radical treatments are crucial due to thyroid cancer, goiter, medication not working etc.
I am not against or for these treatments.
I am not a doctor to tell anyone what to do.
Although I have to share what we went through and what the outcome was.
In my wife's case she's glad she didn't agree for Surgical removal of thyroid or RAI. This had proven to be good decision for now as she had been Euthyroid/showing symptoms of Hashimoto's for 8 years or so.
Please, please, engage your daughter to DYOR, there's hope for normal life or at least for calming the body even after NHS withdraws the thyroid blocking drugs. (edit: they can't do it legally, I just read about this)
There's even herbs that my wife was taking during carbimazole treatment. Endocrinologist was baffled why he needs such a low dose of the drug.
Again, I'm not recommending any herbs, it's just something that was worth mentioning.
You're a great mom, there's a lot of help on this forum and a lot of good people that know your and her pain.
Hi, I was just thinking what a great husband you are too ☺️
We are keeping all options open but striving for the best outcome. My daughter has taken alot on board this weekend but is working towards getting herself well.
We are so grateful for everybody's time and support in responding. Thank you for sharing your story and all the best to your wife ☺️
p.s. If hyperthyroidism is confirmed and your daughter does trust herbs consider this:
I've got an advice from local dispensary and started mixing the following:
Bugleweed+Motherwort+Lemon Balm tinctures in equal proportions. It's basically similar to Thyroid Calming Tincture. Worked wonders for my wife. Bugleweed and lemon balm are powerful hormone production inhibitors.
Thank you so much! I'm in to natural nutrition and supplements. I've started her on 5000 of vit D, k2, folate and magnesium yesterday. I shall look up your calming tincture to start. I'm all for helping her naturally alongside the medication.
1) It's helpful to let us know how old your daughter is - it affects how medical professionals treat her.
2) An adult can legally refuse to do things that a doctor recommends in most circumstances, but a minor has fewer rights in that respect. Parents who disagree with a doctor's treatment and who refuse to treat the child how a doctor recommends can get into a lot of legal trouble.
3) If someone with hyperthyroidism finds themselves still overactive despite treatment with anti-thyroid drugs after about 15 - 18 months, doctors start suggesting that the patient should agree to going through RAI - Radioactive Iodine treatment. Quality of life is much poorer than normal after RAI. Another possibility, depending on the health of the thyroid, is that doctors recommend thyroidectomy. Patients often find themselves left under-medicated with thyroid hormones because understanding about thyroid is often poor amongst the medical profession.
4) Doctors think that hyperthyroidism is dangerous to the patient, which is probably true when the patient is untreated, but is not true when the patient is well-treated.
5) If a patient refuses to go through RAI or thyroidectomy they cannot be denied anti-thyroid drugs like carbimazole or PTU, even though this is often threatened.
6) Research has shown that the longer someone is on anti-thyroid drugs the more likely their condition is to go into remission.
Good nutrition is helpful for anyone with a thyroid problem of any kind. But food can't substitute for inadequate thyroid hormones in hypothyroidism or too much thyroid hormones in hyperthyroidism.
With any form of thyroid disease having low nutrients is very common, and poor gut health is also common. Sadly, people with thyroid disease often have to take lots of supplements because their digestive systems no longer function well. But it is a bad idea to supplement randomly - and multivitamins and multiminerals are not recommended for reasons given in this reply by member greygoose :
The ones that seem to be affected a lot with thyroid disease are :
Vitamin B12, Folate, Vitamin D, and Ferritin (iron stores).
We always suggest getting these tested early on in any thyroid treatment. Some GPs will test nutrients, some refuse.
Later, there are others that people might decide to test :
Zinc, Copper, Iodine, Selenium
If private testing is required, the cheapest and easiest way to do this is with finger-prick testing - no doctor required. Some tests do need blood samples from a vein and hence a phlebotomist is needed, but in the early days this can often be avoided.
Antibodies :
Getting thyroid antibodies tested is important in thyroid disease - but it may only be needed once or twice, depending on how definitive the results are. I hope your daughter has had testing for Graves' Disease before being diagnosed as hyperthyroid.
Hypothyroidism is far more common than hyperthyroidism. The most common form of hypothyroidism is Hashimoto's Thyroiditis (known as Hashi's). People with this tend to have TPO Antibodies, or may have Tg Antibodies, or may have both. The NHS rarely measures Tg antibodies, which is annoying.
The reason I mention antibodies is that Hashi's often appears in its early stages with episodes of hyperthyroidism, but after a while, as a result of damage to the thyroid the patient becomes permanently hypothyroid.
There have been occasions on the forum when people have been diagnosed as hyperthyroid, when in fact they have a condition (Hashi's) which will eventually make them hypothyroid. This is bad news for people who are rushed into getting RAI and end up being treated for the wrong condition. (This mostly seems to happen in the USA.)
There are also a different type of antibodies associated with Graves' Disease - and this is true hyperthyroidism. But doctors don't always test for those antibodies which I think is negligent.
There are some people who are unfortunate enough to have antibodies associated with both Hashi's and Graves'.
.
Companies that do testing of use in thyroid disease - includes some discount codes :
Some useful tests - unfortunately there are no tests I know of which just test the four nutrients I first mentioned. They are usually tested as part of a test package which includes thyroid testing.
Another useful test is a full iron panel. Doctors usually test just ferritin, but there are situations in which other iron-related tests are important too.
If you decide to do any of these tests, write a new post and ask people what you are hoping to find out so we can check that you've chosen an appropriate test.
The way private testing works is ...
1) Choose your test and pay online.
2) A testing kit is sent to you through the post.
3) Once the blood sample has been taken the test kit is sent back to the company through the post.
4) Results are delivered either via email or via your account with the testing company. They usually offer a doctor's report on results. Once you know more about thyroid disease you might decide to not bother with that if the option to refuse is offered.
Search the forum for info on biotin. It is important to avoid it for a few days before providing a blood sample because some test machines use biotin in their testing protocol, and if the blood sample being tested has high levels of biotin in it it can corrupt the results.
Hi, this is all extremely helpful thank you. A lot to take in but I feel far more informed than I was thank you. She has a call on Tuesday and If the NHS won't agree to the antibodies I shall send off for these tests
Both pennyannie and humanbean have provided comprehensive advice. I just wanted to add how important it is to have the correct antibodies tested. I was initially diagnosed with Graves (with symptoms of weight loss, palpitations, tremor etc) but following forum advice to test, I found I’m actually under active with Hashimotos.
It takes a lot of time to both read and process all the information you’ve been given. You are doing an amazing job informing yourself to help your daughter. Do keep posting and asking questions; we are here to help and support 🦋
Hi, thank you so much for your advice. My daughter is struggling so I'm trying to filter everything I can for her and make sure qe are informed. I shall make sure the antibodies are tested.
Thank you so much for your advice and for your time.
Hello there,just an aside to the wonderfully thorough advice and information given above.I was diagnosed with graves disease in 2018 and my appointment with the endocrinologist took 3 months to come through.My GP couldn't prescribe the anti-thyroid drug carbimazole (only my endo could do that)so he prescribed beta-blockers for me(proprananol).This helped me cope with the symptoms while they were brought under control.I was shaky,sweaty and my heart was racing,as well as being jittery and felt like I needed to go 100 miles an hour.I found them very helpful and slowly came off them as my levels came down.Best wishes to you and your daughter.
Hello again,Yes you can have relapses,you can go into remission and never have another episode,or have occasional relapses.I have never achieved remission.I took carbimazole constantly from 2018 until June 2022.I had a break from medication I think after I had been taking the tablets for about a year/18 months but within 2 weeks my Ft4 levels were back up in the 50's.I suffer migraine and they came back with a vengeance. I continued with the carbimazole but again due to my migraines returning I asked for a thyroidectomy which I had last June.I feel alot better but it does take a while to get levels right and it is best to do regular private bloods to monitor things,and also check vitamins and minerals.Please don't think that this will be the way it will be for your daughter.I have the added complications of migraine(I have always been a slave to my hormones) and I also have developed thyroid eye disease(TED) so that was a further complication.Many people only ever have one episode,and the anti thyroid drugs do the trick.I have every sympathy for your daughter.I had terrible insomnia too,shuffling around all night with my mind racing,it really does tire you out.As the anti-thyroid drug begins to slow the thyroid down the symptoms gradually begin to ease but it is important to keep a close check on blood results so that her thyroid levels don't go too low.It is a fine tuning to get the medication just right so it doesn't slow the thyroid too much.The medication worked pretty quickly for me,by about 3-4 weeks I was noticing a difference.It should be checked after about 6 weeks to make sure levels haven't gone too low.Hope this helps.
Hi, thank you for your reply. It sounds like you have a had a rough time, I'm so sorry. My daughter has Racing thoughts and has never slept well.
She was bulimic in her teens and she doesn't eat nutrient dense food so I know I need to check her vitamins and minerals. I'm toying with taking her for private blood tests or to order online. Their are so many to choose from. I have functional b12 deficiency and would like to get her checked for this too. 4 - 6 weeks is good, she gets married in May and is so worried about how she will feel, and react to meds.
Hello again,the one I just did was the medichecks one which includes the thyroid hormones plus the core vitamins and minerals.it's about £80 odd pound.It sounds alot I know but I don't do that one every time.The one with just the thyroid hormones is about £30.If you go on Thyroid UK you can get a money off code for 10% off.An earlier post gives lots of details about options for private bloods.
The results are quick and if you post the results on here great advice is given.Sometimes results are in range,but not optimum and that is important.
I found out I was low in vitamin D.It was in range but not optimum so I now supplement.
I have found that having a problem with my thyroid has made me take more care of everything else and look after myself better.
I have learnt that being a picky eater is no good.I have had to make sure I eat regular better quality food,trying to take time to relax etc.
I can understand you daughter wanting to be better for her wedding,but there is plenty of time to get her right for that.Just keeping a close eye on blood tests and learning things for yourself is the way to go.I had my thyroid out last June and my daughter got married in December but I felt great by then and was able to have a great time.
Stick with this forum and they will guide you through it.
Thank you, this is all very reassuring. I can relate to your story about picky eating. My deficiencies led to a complete overhaul which I am thankful for. I hope I can encourage my daughter to do the same.
I am so thankful I came back to this forum, you are all so wonderful and have picked me off the floor with your kind support. Now I am better placed to support my daughter. Thank you again🙏
Covid can trigger hyperthyroid - thyroiditis. It did it to me.
I would avoid anything with added iodine, such as milk alternatives and supplements where it is added in as It can make hyper worse. Especially if the thyroid is autoimmune.
Avoid biotin as it can affect blood test results.
Definitely get to a good endocrinologist and get all antibody tests done. An endocrinologist will also do a whole series of other related blood tests which will form the full picture.
Medichecks also offer thyroid panel, finger prick home blood tests. These are efficient and accurate.
Ahhhh, thank you for sharing this with me.Will an endocrinologist test for minerals/vitamins? I'm trying to find the quickest way to help her. If I pay for private blood tests I don't want to scupper her support from the NHS but also don't want her to have to wait months for answers 🙏
I know this was a reply to someone else,but I just wanted to say that I have used private testing alongside all my NHS blood tests.It will not cause any problems for your daughter.Sometimes the wait for tests,or appointments can be frustrating, as can trying to get hold of test results.I just find it so much more convenient(I know the cost prohibits many people).I can see the results within a few days and ask advice on here if necessary.
I have told my GP and endocrinologist the results of my tests on occasion and have found them OK with it.It is saving them money after all.If your daughter had vitamins checked now,she could be working on any deficiencies she may have while she is waiting for her endo appointment. That can only benefit her in the long run.I have never asked my GP to test vitamins,so I don't know how receptive they would be.Glad you feel more able to help your daughter now.
I would recommend you test antibodies/ vitamins/ thyroid privately with Medichecks/ Blur Horizon etc as these tests will cost more if ordered through a private hospital. I’ve always found it useful to go ‘armed’ to an endocrinology appointment with all the tests complete…the appointment can then focus on ‘what to do next’ / explore options.
I would keep yourself in the NHS system, an endocrinologist is very good and getting all the blood tests and scans done. I would write down a list of question and have them ready for your appointment.
Like others have said in this chat have, it is fine to use both private blood tests and endocrinologist as well as NHS. You must do what you feel is best and always stay in touch with your GP and don’t be afraid to ask questions.
These things can take time to get to grips with. Your daughter is in good hands with you and I’m sure together you will both work out the best way forward 😊
Hi, thank you for your kind words. The Dr who delivered the results was exceptionally good with my daughter so we plan to stick with him. She's going to have a call this week and has some notes ready and some blood requests. Failing that we shall order online. When we know more we shall come back for advice ☺️
We have made good progress over the weekend witj everyones support amd a few tweeks, hopefully she will turn a corner soon and start to feel better. 🙏
Please, Rockerfella, read the Patient Information Leaflet for the Carbimazole carefully. Then read it again. And make sure your daughter also reads it.
If daughter has issues such as are described (sore throat being a classic) seek advice/help straight away.
But, having said that, many patients never have any such issues and tolerate Carbimazole well sometimes over many years.
So I had an overactive thyroid from graves disease! But I found out years later that I actually had celiac disease and that maybe I should have just given up gluten and it would have helped! I don't know if that is the problem, but you might want to test her for celiac disease!
You're still entitled to free NHS care if you choose to pay for additional private care. So don’t be concerned using private testing will affect your daughter’s entitlement to be treated.
Doctors do not have to accept privately gained test results and treat using the information. You are however in a strong position to advocate they repeat the test, or for example on case of deficient nutrients are in a position to self “treat” using over the counter (non prescription items) without involving doctors.
“lymphocytes are 1.3 slightly out of range”
What is range? Is this low?
Very very rarely carbimazole lowers white cells, doctors often look at neutrophils in particular, initially. I have been on carbimazole 5 years & Full blood count was tested twice early on. Then if I develop a sore throat a full blood count test is arranged.
Hi there, I have had Graves for 15 years and just wanted to say, don't let doctors push your daughter in to treatments she doesn't want. I have been on and off AT (anti-thyroid) drugs for years and it's worked just fine for me. Of course, that is just me and everyone is different, but endos really like to push for RAI and thyroidectomies. And sometimes that works great, especially if they have horrible hyper symptoms and the pills don't work for them. But then you can have the same horrible time with being hypothyroid which is what will happen if she has RAI or gets her thyroid removed.
Someone on this forum posted this medical journal and I used it to convince my endo that I could stay on ATs long term.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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