hi all, my son was diagnosed with hyperthyroidism he had terrible weight loss, hair loss and frequently opened his bowels. He has just informed me that he has came off all his meds as they were messing with his head. The problem is he has the shakes really bad and his eyes are burning at night when he tries to go to sleep. I don't know how to help him with the shakes or even what to suggest eg suppliments or minerals ect. He had the shake before his diagnosis, his meds propanalol seemed to stop the shakes, pls any advice.
shakes: hi all, my son was diagnosed with... - Thyroid UK
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Angelic69
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helvellaAdministrator
Are you saying he was ONLY on propranolol?
Anyone who is seriously hyperthyroid should be started on an anti-thyroid medicine (usually carbimazole but sometimes propylthiouracil) as soon as diagnosed. And should be sent straight to an endocrinologist - should not be under GP care. We do see people having to wait for their appointment to come through, which is terrible.
If he is as bad as he sounds, get back a a doctor as soon as possible - like tomorrow. If things get any worse, get in touch with the NHS emergency number (e.g. 111) and ask for their advice and help. If significantly worse, 999.
No he was on carbimazole too, asked him how was his thyroid he said he had got shakes but was getting some propanolo today, later he wrote and said he wasn't taking any of his meds as they messed with his head and would rather have normal ability to focus and look normal, i haven't seen him so I'm assuming he is relating to his eyes as they were really bulging and protruding even before he started taking the carbimazole. Seen a latest pic on facebook his eyes look a lot better even now he has stopped his meds but he said they burn when he closes them. I'm not in direct contact with him so can only go off facebook pic. He had been referred to endo but his brain fog made him unable to organise himself and he doesn't pick up his mail and disappears and no one seems to know were he is and it makes it impossible to make contact or to help him organise to get to appointments. Hes 28 and lives primarily with his dad who promised me he would help him remember to get his medication. i have today contacted him on messenger and sent him the links but haven't had any reply as yet. we have heart and strokes in the family, I'm worried too that his heart will just one day fail to keep the pace.
Oh dear : (
There's no mention if he has a fast heart rate. Yes, if that goes on for some time, it will cause heart failure.
Does he have high BP? Untreated it can cause a stroke and kidney damage or failure : (
He does have a heart rate of over 100 when he unwell and says he's always hot so id guess yes. He tells me he received some propranolol after i spoke to him and has assured me that he has taken some and feels less shaky and his heart rate has become normal again. Fingers crossed he applies for a repeat before they run out again.
Re thyroid eye disease.
Its best he gets his eyes checked out as well. I understand thyroid eye disease can become a separate condition of its own even when the thyroid hormone levels are under control.
Ive been down that root and had no joy at getting a diagnosis or connection to the thyroid underlining issues by the Gp, several opticians and finally a referral to the eye specialist who was the same age as my daughter who couldn't solve the problem or suggest a solution the poor girl looked so sorry that she couldn't help i left feeling sorry for her, lol. All they give you is dry eye treatment for everything. I miss the old school doctors who knew there stuff and could fix you real quick. Our only hopes at becoming well seem to be fellow sufferers who have the knowledge of trail and error. I need a GP to restore my faith at the moment.
shawsAdministrator
I am really sorry for your son. Sometimes the medications we have to take may make us feel worse initially.
However, I think he will have to keep onto the propropanol in order to keep his heart lower as everything in his body will be racing along - it must be awful. With hyperthyroidism everything in his body goes too fast, thus all his awful symptoms.
Those who have hyperthyroidism will respond and I cannot help very much as I am hypothyroid.
These are a couple of links which I hope are helpful:
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
Ive past on the links and will be viewing them myself also. When he was a child he had a thryglosal cyst which was operated on, I'm now wondering if that may have something to do with this onset.
I can only tell you what helped me,,,I went straight to homeopath,,also got lemon balm extract,,rubbed some of this on wrists around ears on forehead and thyroid,,,,I aso had bugleweed tea bags which helped amazingly with racing heart ,,,,,,,,hope this helps
Your son probably has thyroid eye disease, which if left untreated can eventually cause blindness. I understand your son doesn't want to be taking medication that he feels makes him feel worse, but maybe if he thought he would make himself blind eventually he might take the medication? Your son should be referred to an endocrinologist urgently and should be having his medication adjusted every 2 weeks until he is stable. Then he should continue medication until he starts to become hypothyroid, when his medication will be reduced gradually to see whether his hyperthyroidism resolves itself. If it does then within a year or so he may be taking no medication at all. If it doesn't resolve itself he will probably be offered either a thyroidectomy or Radioactive iodine to destroy his thyroid. Either of these options will leave him permanently hypothyroid and having to take medication (like most of us) for the rest of his life.
So if he can take the meds it's the best option and I hope the situation resolves itself for him. He needs to take the long view, which I know is hard when you are young. Any of the above options are better than going blind avoidably!
Ill have to find out how long his eyes have been burning and see if it is in correlation to stopping meds and his thyroid hormones creeping back up again. He said he does really drink so I'm guessing the only fluid he is getting is in his food and I'm now thinking that he may be highly dehydrated. Ive told him to drink plenty of water so fingers crossed he will.
Yes drinking more water than usual is a great idea if u are hyperthyroid. My mouth and eyes can become really really dry. Drinking more water really helps overall. It could lessen the brain fog as well
Well he said he wasn't drinking no fluids at all, shocking and worrying. Just thinking maybe the rapid heart rate was due to thyroidtoxicosis as the dilute in his blood wouldn't have been diluted at all due to his dehydration. He is such a worry, He doesn't live with me as he is 28 and forgets to hydrate himself. Must get him a personal alarm to remind him to drink some water.
It is very worrying when your child is ill and the doctors don't seem to have a clue.
With thyroid gland problems doctors don't seem to know very much except the TSH.
eeng
I was under the impression that RAI was not recommended for people with Thyroid Eye Disease (TED) because it could make TED worse?
Not sure what RAI is, could you give me some info pls.
RAI = Radioactive Iodine.
RAI is one of the treatments doctors use to partially or completely destroy the thyroid when it is overactive. It is a drink. I don't know much about it, sorry, other than it isn't considered to be a good idea for people with Thyroid Eye Disease (TED).
For people with TED, if drug treatments don't work for hyperthyroidism, and a permanent solution to hyperthyroidism is needed then the other possibility is removing some or all of the thyroid surgically.
They suggested that to him but they don't know or overlooked that he forgets to order his prescriptions and gets into a right stake, if they take it out and he has no meds or decides he doesn't want to take them because they mess with his head we , he would be in real trouble. Ive read that after treatment some people can come off thyroid treatments as long as they stay stable, if they remove the thyroid they ruin any chance of remission and synthetic hormone dependency. I don't like the sound of that.
Just remember that people always have the option to refuse RAI or surgery. They can insist on staying on drug treatments whenever necessary if they want.
If your son refuses RAI and surgery, the health service cannot refuse to treat him with anti-thyroid drugs.
Hi angelic.
When diagnosed as hyperthyroid and after being on antithyroid medication for 18-24 months, doctors will recommend stopping the medicine to try and see if the hyper recurs. Where I live, the relapse rate is 70-75%.
After a relapse, docs usually recommend RAI to get rid of the hyper state and causing hypothyroidism in the process, with the rationale being that hypothyroidism is "easier" to treat and a "safer" condition to have. Which if all things were equal, maybe. But many folk who develop hypo and hyper usually arrive at these states already not in the best of health, poor diets, other medical conditions, stressful lifestyles, that push the thyroid out of whack.
Docs I've encountered never asked after my health history nor my current state of health and encouraged me to get an RAI. Highly irresponsible since they do not have to live with the consequences.
The fact which docs never tell you is that if the antithyroid med works and keeps the hyper under control, one can continue taking it indefinitely. It's not a MUST to get a RAI and become hypo, but that's the impression that's generally given.
I'm really worried about our health system and the lack of empathy, experience and overall professionalism expressed by a lot of these junior doctors. They seem to have replaced the ageing well mannered and expert professionals that could cure you as simply as making a cup of tea. I really miss them, and i fear these youngsters lack of expertise will end with myself being labelled as just another mistake by a jumped up junior who is trying to fill in the blanks of his or her education by trail and error. im obviously the wrong side of forty, unemployed and a perfect recruit to play as guinea pig for this practise makes perfect, on the job further training aspect of them becoming true professionals. Ive brought four new individuals into this world at a huge cost to myself and as a thank you im placed at the hands of doctors without expertise, wisdom or time served. It wouldn't be too bad if on occasions i actually got to seek professional help, but unfortunately for me every time, every appointment attended is yet again a youngster who up to this date has always re referred me somewhere else like round and round i go, no wonder we have brain fog. A voice whispers into my ear that i should be grateful for what i have been given instead of whining on at what i have not, but i feel that i deserve a better deal than to be given a medication that is not bringing me to optimal health and then left to stew in that state for an endless period.
We have that problem here too if one opts for subsidised healthcare and most do since private healthcare is really expensive. Along with a skyrocketing elderly population and one of the highest rates of diabetes in the world, our healthcare system is bursting at the seams. So yes we also see our fair share of not-so-experienced docs. The situation is so desperate, younger public service GPs are being trained to treat those with thyroid conditions??? For those hyper, u get to see an endo only when u're getting an RAI. And worse, under subsidised care, u get any endo, not one who is trained in thyroid conditions, so the "specialist" repeats the same textbook spiel to u, the same as the GP, with no real idea as to how the condition is effectively managed. Frustrating to say the least.
I finally got to see a REAL thyroid specialist, the nuclear medicine doctor, when I was seriously considering getting an RAI. 2 years after diagnosis! Had I been able to see this real expert from the beginning, I would have gotten real info on how to manage my condition and avoided the subsequent deterioration to my body.
I empathise with u. I'm really pissed that I didn't receive the requisite level of care and that not being wealthy enough deprived me of getting proper good care.
If i hadn't been directed here Christ knows where i would be. The NHS must have spent so much on my constant health visits, optician visits and spectacles, referrals to see specialists with little or very low value for the tax-payers money, and believe me i didn't want to waste their money. And then a gathering of well meaning people that create these forums and other professionals that post free impartial advice and you slowly get well. They is the NHS wasting money and time.
Thyroid eye disease and RAI.
It is correct RAI is not recommended for those with TED. This is because of the method of destroying the thyroid - taking up to 6 months via a single dose pill which costs a few hundred dollars. The nuclear medicine doc explained that when the thyroid is being destroyed, it releases a lot of thyroid hormones suddenly which in turn could cause TED to flare and worsen the condition.
And potentially, if one has had any eye conditions previously, like conjunctivitis which has recovered, RAI can cause a relapse.
So if one has TED and also really has to be rid of the hyper, surgery would be a better option in that the thyroid is removed at one go, though there would still be thyroid hormone spike albeit to a lesser degree than RAI
Hi- I was about to suggest similar to Marilyn45- try lemon balm (Melissa) tea and bugleweed and then get to a practitioner. A herbalist would give these in a formula. He needs to do something sooner rather than later. And Melissa is lovely to take.
Hi angelic, I'm really sorry to hear what your son is going through.
For starters, if his thyroid hormone levels are not yet under control, he certainly has to continue with the medication. Getting the hyperthyroidism under control is paramount. It will help with relieving the symptoms, amongst other things, as the condition is brought under control. If the medication is giving him problems, pls do see the doctor again to see if there are alternatives. Remaining un-medicated prolongs his symptoms and increases his risk of developing other conditions.
Next equally important is to drastically cut down the stress levels. At this point when his symptoms are this bad, zero stress will be SUPER helpful. Complete rest if possible, and no physical exercise as well.
With the weight loss, the more stress and the more u worry over it, will unfortunately only make the weight loss worse. Diet-wise eat protein-dense foods to aid weight maintenance. This type of weight loss can be particularly scary as it can eat away very quickly down to the bone. It is critical therefore to treat the hyperthyroidism and immediately cut down on stress, both physical and mental.
For the hair loss, it is likely triggered by the hyperthyroidism. The scary part is the initial phase when so much hair is being lost. The good news is that once this phase is exhausted, and along with the condition being under control, the hair loss does stop and in fact, the hair does grow back. In my case, I grew a new head of hair which were fine straight and pretty dry compared to previously when they were thick strands and curly. Diet counts too. Eating sufficient protein helps to stem hair loss especially for some whose diets are imbalanced.
The frequent bowel movements are a classic symptom of hyperthyroidism. So I think if the underlying cause, the hyperthyroidism, is brought under control, the symptoms should get better. I do not have this symptom so perhaps others can share on this.
The eyes. Hyperthyroidism also does affect the eyes. Mine was primarily my right eye. At its worst, I could feel my right eye ball swelling inside its socket and causing me extreme burning pain with very blurred vision. Also when at its worst both eyes became severely dry and felt like it had sand in them. Painful. My left eye mostly teared a lot and ended up drier as a result. Diet played a part in my eye condition. Eating too much goitrogenic vegetables and eggs somehow made my right eye swelling worse especially when the hyperthyroidism was not adequately controlled. Getting the hyperthyroid condition treated might give the eyes some relief.
The shakes. The propranolol helps so do take it. At this point having all that jittery-ness just adds to the confusion worry and fear. Having a clearer mind will help with making better decisions on how to deal with the symptoms. The shakes can also certainly be caused by stress. When I'm mentally stressed I notice it does trigger and worsen these shaky jittery sensations, and the fact that the propranolol works is testament to my level of increased stress.
The propranolol offers quick relief. But for meds like carbimazole, it takes weeks to months for its effects to work to bring the thyroid hormone levels into normal range. So angelic, pls do ask your son to act on it asap.
Hyperthyroidism can be lived with but first has to be brought under control and managed daily. My father had untreated hyperthyroidism and ended up with heart failure. Left untreated hyperthyroidism can be a dangerous life-threatening condition.
I hope your son feels better soon.
Ive heard from one of his friends he is rushing around here there and everywhere so i don't think he takes time to relax, he also said that he had the window open all the time and does not feel any cold.
Oh dear that doesn't sound good at all. My heart goes out to your boy ... being all alone at this time ...
6 months after starting carbimazole, my worst symptom at the time, a racing heartbeat, was brought under control. I actually thought I was well?! There was zero advice from the doctors so I thought everything was good. I went back to work in a job with quite a bit of activity. Within 2 weeks, my body collapsed. It was a freaky experience. On that day while at work, my limbs started to get heavier and heavier and I seemed able to move only in slow motion. It got to a point when I was completely unable to move, there was simply no more energy. I was like a completely drained battery. It took 3 months rest and a overall slowed down pace to regain some form of normalcy.
When you're hyperthyroid, the body's systems are already in accelerated mode. And when u try to continue with your usual quick pace, its like pushing your body into overdrive and something will give at some point.
2 years later, I was pronounced euthyroid by my doctor. I thought that meant I was better. However the stress at work and home was piling up. Without my realising it, the weight loss started. It was only when my colleagues commented on my being thinner did I take notice. By that point I was already shedding fat down to the bone. And my muscles were becoming flabbier.
The realisation led me to worry even more. How should I stop the weight loss?? The mental stress, the vicious cycle prolonged the weight loss and led to several thumping jittery attacks which the doctor called panic attacks. Propranolol helps. I had my thyroid blood tests done and the results were all in the normal range so there was no increase to the carbi dose. The weight loss eventually petered out. I ended up with skin folds from the rapid weight loss. My whole body is now a lot softer than before the attack. Which means overall its in a weaker state which needs to be addressed.
Not feeling cold. That's another classic symptom of hyperthyroidism. You feel hot a lot from the body systems all being in a hyper state. Cold surroundings bring relief.
Angelic, I hope your son finds some help soon. He's 28 so his body is young and weathering what's happening to it right now. But he's wearing his body down, and some of the conditions that arise as a result, these conditions they never go away and become another condition that has to be managed.
I'm hypo but have experienced the above issues too that you described, and i agree the rapid uncontrollable rapid heart rate was the most scary experience of this disease which make it worse to know that my son is experiencing this same thing is unbearable. His care is out of my hands which also is unbearable. I don't see him much as he never turns up for dinners that have been planned and often can not reach him at all for a while after, i think he avoids the moaning. But the last time i did see him he hadn't any body fat at all and wasn't eating meals properly, his dad is the same and has never eaten a balanced or even any kind of regular eating pattern. My son has always had diet issues and is extremely fussy about what he would eat. I had taken him to the GPs on several occasions as a child as he refused so much food or would fall asleep in his dinner but during puberty he started to fill out and had a really good leg on him. He had an upset, a loss of his first love shorty after and became a different person and slowly he began to deteriorate both in his physical self and his character which lead to him moving in with his father. His condition just got worse and his appearance became too upsetting for me to cope, i think maybe that's why he didn't visit as i wouldn't be able to hide my emotions which probably made him even more upset too. A vicious circle so to speak. He is my shining star and i need for him to be well.
He's 28 angelic, an adult. There's only so much u can do. And if it's as u say, that your well-meaning worry has given him stress, then perhaps taking a step back would be helpful ...
Btw, can I ask- u are hypo? And have experienced a fast heart rate?
That’s fairly classic - I think of it as ‘Duracell bunny’ syndrome - the increased metabolism makes you race around until you drop from exhaustion ! All of this, plus being overheated can make you very dehydrated - I would down a pint of water at a time when first diagnosed, then go back for more !
Thanks all ill advise him, fingers crossed.
Hi,,,,,following on from my last comments,,,,I also ,,even though my blood pressure was sky high and my anxiety was terrible I didn't go on any thyroid medicine,,,I did take proprananol for a while which did help ,,I found some good relaxation CD s which I did find very helpful,,,but you do have to persevere with them till you get your body under control,,,I also burned lavender oil and used it to massage my shoulders neck and ears,,,,these are all alternative treatments that I found helpful until I got my appointment to see an endocrinologist,,,,,,which was nearly 5 months after being first diagnosed,,,,,,splash out on an aromatherapy massage if you can,,,,,,and make sure any food that you are eating does not contain any iodine,,you will feel better eventually but it takes a while. Also get plenty of sleep and don't push yourself,,,hope you feel better soon.
helvellaAdministrator
I suggest he really needs to use a good quality eye moistening product. When I had dry eyes, not due to hyperthyroidism, I used ViscoTears during the day and LacriLube at night. Others find LacriLube unacceptable but it was fine for me. Whatever product, make sure it is preservative-free. Many of us can tolerate the preservatives used for a while, then become intolerant. Trouble is, at that point we can try to use more and more to compensate for the effect of the preservative.
(ViscoTears in bottles contains preservative. In single-dose units it does not - but is very expensive.)
Hi Angelic69, thyroid related illnesses also can cause infertility - also in male- so it is very important to keep levels under control at all times. My husband has been diagnosed with hyperthyroidism with Graves and it unfortunately affects all his body function and sperm production. I hope your son gets help.
Sorry to hear about your husband, I hope my son can get well. Ive heard that some people with hyperthyroidism can come off there medication sometimes after a year as long as the levels don't start to creep back up. I'm hoping my son will be that person and hope that your husband can too. Ive sent my son some really good links that the forum users have sent. There is some very hopeful and informative links that can make a huge difference. I would definitely follow all the links as information sharing saves life's.
Here's a great article on hyperthyroid management-
touchendocrinology.com/arti...
Managed by luck to see my son yesterday, he is exhausted and constantly fidgeting, He is only taking the propranolol and not the carbimoza, sorry don't know the exact spelling. I asked him to start taking the carbimoza and he said that he would. He gets irritated by the reception staff and that's why he stays away from the GPs. I have olanzapine for my episodes of anxiety as i too with hypo had this fidgeting and it did help me to relax. Is there any reason why he shouldn't take olanzapine to help him relax.
Angelic, first up - please advise your son to see the doctor. At no point should he self-medicate especially with powerful anxiety medications that can cross the blood brain barrier. These meds can easily cause addiction and dependency and should not be taken without first consulting a doctor. I was so advised by my GP when I was considering taking anti-anxiety meds
My son has tried but cannot communicate effectively with the receptionists in order to get satisfactory assistance. He has lost hope and faith in this system. He is 28 this year and has already thrown the towel in. He has experienced great pain and suffering and is becoming hardened. Our city is becoming a hard place for many others, a huge increase in rough sleepers, people dying all over. Medicines being wrongly given, doses inadequate or way over recommendations. Not sure if our records have been tampered with thus causing overdosing ect. Its one huge mess.
Carbimazole. Please make sure he takes it. His body is already running on empty and still going full steam ahead on empty. A very scary situation. The hyperthyroidism is wreaking its havoc. My dad was in his 70s when his hyperthyroidism struck. He was already in poor health and mostly in a sedentary state. Despite not too much physical activity, the hyper still caused his heart to race and as he remained undiagnosed and therefore untreated, it led to heart failure.
I imagine your son, compared to my father, would be a lot more active, and in an untreated hyperthyroid person, this just means accelerating the disease process. Something will give. He must receive treatment before something really bad happens.
And sorry just one more point. Your doc prescribed the olanzapine to you? Your doc has seen u and so deemed the medication suitable for you. It may not be the case for your son. He has to be examined by a doc to be prescribed a medicine suitable for his present state.
Take care. Sure hope to hear he's doing better soon
As ive said at present he cannot cross the receptionist doctor barrier so for him its impossible to actually see any let alone his doc. At best he may get a phone consultation which ill try to push but he is incredibly sensitive and has just about given up, if I push to hard I will lose all contact.
Wow sorry to read how sick ur son is. I have hyper/graves and have been close to death twice. My endo told me that your thyroid is the engine to ur your body. Is he depressed?
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