Ok so I'm overactive I was on 20mg for 6 weeks my levels barely moved, then endo purs me on 40mg that very day I had a blood test 4 week after and my gp viewed them and nope my levels are still the same. The question is why is the meds not working? Also could it be a warning sign for thyroid storm
Could it be the start of a thyroid storm? - Thyroid UK
Could it be the start of a thyroid storm?
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Kirstylstocks
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Hi Kirsty, I think we need more information.
You say you are hyperthyroid? Is that Graves disease?
20mg and 40mg of what?
Do you have the results of any recent blood test, If you post them here (with reference ranges) it might help understand what is going on.
Kirstylstocks• in reply to
I am hyperthyroid yes. As for graves disease my endo said I do not have it but then wen I saw my gp yesterday he said my anti bodies were high so you probebly do. This as confused me. I'm taking 40mg of carbimizole, I was taking 20mg.
My tsh 0.01 my t3 is 12.9. And my free thyroxine is 29. These levels have not changed. I started on 20mg of carbimizole, I was on them 6 week then on my endo appointment he said the levels have not changed and put me on 40mg carbimizole. 4 week later I had another blood test the results showed no change again.
• in reply toKirstylstocks
I don't know much about Graves, but hopefully someone else can help.
How do you actually feel on the new dose?
When you post results add the reference ranges (usually in brackets, or with an "R" next to it after the results. For example, TSH 0.01 (0.25-4,2). They tend to vary with different laboratories.
Kirstylstocks• in reply to
I'm going to go on what my endo said if I'm honest as he said I dont have graves. I'm concerned that it could be leaning towards a thyroid storm. The reason I think this is because my levels are not changing. My symptoms have not changed I get body tremors fast heart rate of 120 resting I feel drained all the time thirsty anxious confused stressed forgetful too
• in reply toKirstylstocks
Apparently Graves is hard to diagnose. I'm no help though, not even sure what a thyroid storm is, and how it's different from Graves!
Kirstylstocks• in reply to
It's ok no problem a thyroid storm is a life threatening condition which is assiciated with a untreated or undertreated hyperthyroidism. During the thyroid storm I person heart rate, blood pressure and body temperature can soar to dangerous high levels
• in reply toKirstylstocks
Wow! No wonder you are worried. Hope you feel better soon x
Kirstylstocks• in reply to
Thankyou for chatting with me
The symptoms of thyroid storm are very similar to those of being hyperthyroid, but they take off quickly, and you would probably be feeling a lot worse than you felt when you first posted. Your thyroid levels may not have come down, but at least they haven’t increased.
I had all those symptoms and more when first diagnosed with Graves’ - being hyper is pretty scary. It also makes you anxious, which feeds your stress levels - most hypers will tell you to avoid stress as much as possible, but if they are honest will admit that’s pretty difficult, because being hyper you will create your own stress! Whether you have Graves’ or not, your overworked thyroid may be swollen.
Carbimazole can take several weeks to make a noticeable difference as it only reduces the amount of new hormone created, and anything already in your body will need to work through. The original dose was pretty moderate, so maybe not enough to have much impact.
I was given calcium channel blockers rather than beta blockers, because of my age and because I had high blood pressure. They helped with breathlessness and those awful tremors, but it took a while for my heart rate to come down.
The antibodies that tell you whether you’ve got Graves’ or not are TRAb and/or TSI. Graves’ is the most common cause of being hyperthyroid, but there are other causes. The thing to ask your endo is, if not Graves’, then what is it ? (And what makes them sure?)
Here are some links that may help:
btf-thyroid.org/information...
thyroiduk.org/tuk/about_the...
btf-thyroid.org/information...
Your symptoms sound pretty typical of being hyperthyroid, but if you are worried, and don’t feel you should wait for your endo appointment you could always head for A&E.
Thankyou I have read the links you have shared this as helped
Initially went through the same thing.... escalating dosing to get levels down... until bam felt like a slug slogging through thick pudding... slurring words etc. then had to start backing down off of dosage... was up to 30 mg of methimazole 10mg 3x a day... then 2 10mg 2x per day .. 1 then down to 1/2 of a 5mg tablet once a day.. and now that same 1/2 every other day, have been stable for 2 yrs. I took meds before meals vs all at once to have a more consistent release of meds throughout the day.
Now they are saying hypers can stay on long term, to maintain.
Hopefully you are taking meds on an empty stomach and waiting at least 30 minutes before eating... although awful tasting what I found effective is put the tablet under the tongue and allow to dissolve... it gets into the bloodstream faster ie "sublingual" .. then swish with water.. level changes can take 6-8+ weeks to show.
Also, make sure to cut caffeine and other bp elevating foods/drinks including sugar.. at least temporarily cut out gluten/dairy too. Shift to an anti-inflammatory type diet (inflammation helps aggravate your system)
Have you had your thyroid scanned for nodules etc? If no movement those could be aggravating the symptoms.
Stress, are you going though or in a high stress situation (other than thyroid) If so that situation can have physiological effects especially if it's on going long term.. ie elevate fight or flight ie adrenals etc. which lead to inflammation and ++++ So, perhaps ask for a full vitamin/mineral/adrenals panel too... Vitamine D and B12 get depleted with hypers. and good omega's are good to help the heart.
Graves, if your antibodies are high then yes graves can be a factor (immune system attacking thyroid) and rule of thumb is ie the diet referenced above.. it helps a lot.
You are most likely not in a thyroid storm, if you were you would be in the hospital.
If your bp is elevated some at least temporarily take heart reg. meds like bisolic to bring down the bp. Moderate exercise helps like (slow walking and gentle yoga and meditation to calm body through breath). I know you won't feel like it but it will help vs. being sedentary... helps to release adrenals, etc.
I totally get how scary getting a handle on this can be... but you will and can! Try your best to not get into your head with scary thoughts as mind body does play a part ...
That's helped thankyou. I have asthma so I cant have beta blockers. I'm thinking of contacting my endo secretary and asking them to pass on a message for me. And request seeing him sooner. I have my gp saying one thing and my endo saying another so think I need to see my endo. I have a swollen goitre and my gp said that it's not necessarily my thyroid causing my goitre. But I have read that it does and also my endo said the same thing. I had a radioactive scan and showed swelling was forming and spreading across and now its noticeable. But apart from that It showed nothing else but all I can think is was that scan done too soon or have i now got noduals? My lympth nodes are swollen too they been swollen for weeks so cant help but think that's it as something to do do with my thyroid/goiter. I had the scan in January.
Hi there,
Just to let you know that there what are called cardioselective beta blockers like metoprolol, that do not have an effect on airways and would not affect your asthma. You may want to ask your doctor about those. Good luck and sending you good wishes and positive thoughts.
I was put on varapamil but they didnt help my endo didnt understand why I'd been put on them but yes I will ask about them thankyou
I would also get a second opinion on your thyroid. If you have swelling and if your lymph nodes are swollen then that warrants immediate attention by a specialist. All the best.
Thankyou this is what I tried telling my gp but nope I'm definitely going to phone hospital try see my endo sooner
That's interesting I wonder why they aren't offered. I was told I couldn't have beta blockers as they narrow the airways 🙄. It would stop a lot of suffering and feeling panicky
It depends on your doctors knowledge of beta blockers and how they work. Some GPS may not be informed on this. If you Google cardioselective beta blockers you will find a description of how they work and a list will come up of those beta blockers that are used in patients with airway problems.
Of course, every person is different and it may be that your asthma is considered serious enough that they don’t want to try you on the BBs.
On this forum I don’t ever recommend anyone take anything without medical consultation because I am not a doctor and wouldn’t want anyone to be harmed by my advice. But I would certainly print out the list of the BBs and ask MD what he thinks. Good luck and all the best to you.
Thankyou this go saw that my heart was 120 but offered me nothing so instead I'm going to see what my endocrinologist says but I will certainly get a list you have mentioned. Because surly the longer it goes on the higher risk I'm getting. What confuses me is my endo said my thyroid needs removing but the gp I saw said you need to make sure this is right for you because it doesn't mean you will be better afterwards so h was saying opposite to my endo i trust my endocrinologist and if their was other options like just seeing if we can get it under control I'm sure he would mention this. So this is why I've decided to only listen to the endocolagyst. When making decisions like but on this forum also helps. And I really appreciate all the advice I get on here. I see my endo next week coz his security booked me in bless her. My levels not improving makes me question why and is this why my endo thinks opperation is needed but on the other hand i also think do i need another scan?
It seems a bit too soon to think of surgery, but I'm not a doctor. I have to say that I think medication is the first step. I would get a second opinion but it might be that you are one of the ones that don't respond to medication 🤔please don't be pushed into anything that you are not comfortable with.
I've had hyperthyroidism on and off for 7 years and I must admit it's not the first time I was told about possibly surgery. I was told by a different endo that if it comes back they may need to opperate as it's gone on too long. I'm thinking the same I think the only option after I tell them I think another scan should be done, is surgery as I dont feel any different to what I did when it all began again. I've looked at all the risks ect but that's fine all opperation have a risk what I need to find out aswell is that I dont have graves disease and if I do the question is what risks are involved if you have graves and also ask him why would my gp say that it may not be my thyroid causing the goitre now that does not make sense. I think he was trying to put me off but if my endo thinks it's the best option then so be itni will have the op. I know there radio iodine treatment but I have a 2 year old and 7 year old so not really an option for me. I know I might need to be on vitamin d tablets and calcium tablets for the rest of my life but that's fine too I dont plan on anymore children either. So I dont need to think about that one. Honestly I dont know what I would do if I didnt come one here
If you have graves taking carbimazole, most say it's recommended is to have surgery vs. rai. it could aggravate graves (if you never have taken carbimazole then rai could be and option, know rai is not exact vs. surgery is) Surgery would be a last option.
Please talk with your endo if you have multiple issues, goiter is common with thyroid, high bp, etc. GP's don't see enough of these cases...
The problem with rai is I have a 2 year old and a 7 year old so I cant really have that. As you cant be around your children. I am going to speak with him again tho on Thursday. I'm taking carbimizole I started off on 20mg I'm now on 40 mg and been on new strength 5 week now. Endocolagyst said that the 40 mg will bring it down but it hasn't my levels are still t3 is 12.9 my t4 is 0.01 and my free thyroxine is 29
Well hopefully at your next blood test they also test for
1. graves aka the thyroid antibody test.. that positive then most likely graves/autoimmune going on..
2. for them to do a nuclear scan can detect hot spots and nodules if you have they usually monitor that post initial scan with ultrasound of your thyroid too to see if you do have nodules.
3. full vitamin/mineral test and adrenals and to see if your depleted/ high.. b's, d's can go low esp if running hyper and cause symptoms. Given the amount of med potassium can go high and cause shaking/cramping (potassium rich foods are good aka dates/bananas etc.) Adrenals esp if your high stress (in a constant fight or flight mood) etc. elevated can cause inflammation which adds to the symptoms.
If they can't get you regulated or heading downward, goiter keeps growing then like I said, surgery would most likely be the option esp since your taking carbimazole.. Try splitting your meds across 3x per day vs. all at once, on a empty stomach then don't eat for at least 30 min. Move to a anti-inflammatory diet, cut out gluten and dairy and processed foods. (give your body a rest and ability to focus on healing vs. digestive inflammation too.) Believe me, I know how stressful this cycle is, most of us do... reduce stress, slow walk (move) try sloga(slow yoga) yes even meditation/breathing can help calm/slow down your system (mind/body)
Why is endo recommending surgery now? Do you have a goiter and nodules? Is carbimazole not working? Have you had a nuclear scan already? I would find out exactly why he wants you to have surgery and that would help to evaluate your situation. Wishing you all the best.
I have a goitre and I dont seem to be responding to the medication. Since I last saw him the swelling as got worse and my lympth nodes are now swollen. I phoned hospital i see my endo next Thursday. You can follow me if you like then you will see updates sooner I think lol
Good luck to you and all the best wishes 🤗
Thankyou do much for everything
Your endo is a specialist for a reason ! Hypers are almost always referred to endo straight off, so GPs are unlikely to have s lit of first hand experience of treatment.
... but I missed the bit about surgery.
The fact that it keeps recurring does sound like Graves’.
If your thyroid levels can’t be controlled with long -term low dose carbimazole, maybe surgery is the best way forward. But insist on talking through all the options and their implications. Once you’ve lost your thyroid, you will almost certainly be hypo for life, and there is no going back.
However, you won’t be worrying about thyroid storm , or the side-effects of carbimazole.
If it isn’t Graves”, I’d still want to know what is causing you to keep becoming hyper
Yes I agree with you . I've spoken about options with my endo and in the past other endocrinologist too but it always boils down to surgery and from what I just read on the links that's in my comments I think yes surgery is the best option. I suffer with most of the symptoms that was named and described too.
As far as I know I haven't had a thyroid storm but at the start I was just like you. Have they given you beta blockers for heart palpitations? If you can take them it might be worth asking, I couldn't have that as I'm asthmatic. I used to try and sleep propped up, but didn't sleep much anyway. It takes quite a while for the Carbimazole to work but maybe you should ask if the alternative drug called PTU might be better for you. People react differently to the medication. Seems a bit odd when GP says antibodies are high yet endo says not🤔. Maybe try and get a second opinion, you are well within your rights to ask for one. Maybe you are also panicking a bit as nothing seems to be happening, panic attacks and anxiety are common with hyper/ graves. I was prescribed citalapram for anxiety, panic and graves rage. If you go onto thyroid uk or British thyroid foundation there is quite a bit of information which also may help. Knowledge is key because the dr's don't have enough and hyper/ graves research is poorly funded as per my endo at my last appointment. Good luck keep us posted as to how you get on x
Hi I have asthma too I've tried varapamil but they didnt help with my heart rate but greekchick as mentioned some other beta blockers so I'm going to ask about them. I am panicking about alot of things my health and my job. And with been told 2 different things its confusing so I think I need to just listen to my endo. I'm on steroids and anti biotics now too as I have a chest infection. So that doesn't help but thankyou I will ask endo about ptu
I used to get a lot of chest infections as well 🙄. The asthma nurse suggested probiotics and I now drink actimel each day and touch wood I haven't had an infection for a while. Might be just a coincidence not sure . My GP did say that the gentlest beta blocker was a low dose of bisoprolol. Haven't tried it I just rode it out. Good luck
Thankyou
Also I have managed to get a appointment with my endo next week so that's good
Yes, it’s scary with the Graves. I had T4 of 48 at the worse point and over a year the carbimizole stopped working so I opted for the RAi treatment. To be honest I have never felt better! I am so glad I went for it, I am feeling the best I have felt for years. It’s different for everyone and I was v nervous doing RAI and in the first three weeks I really questioned had I done the right thing. My heart rate was 120 while sleeping and beta blockers didn’t really help but today my heart rate is under 80. I am sleeping so much better too. I had a growing goitre and then a nodule appeared from nowhere back in December and it was scary sometimes my heart rate would spike over 200. I go back to my Endo in May to find out about meds and my bloods.
You hear a lot of negativity here about Thyroid removal but for me it’s the best thing I could have done...I feel great. Even my parents and friends have noticed the difference in me.
Good luck with the Endo...
Think I replied to your post about having it and just read this comment stating you’ve had RAI. I’m happy it went so well, makes me feel more confident for mine in 2 weeks.
Thankyou so much.i have a swollen goitre too now with lympth nodes my go said it might not be my thyroid causing my goitre I could just have a goitre that's it. But endo thinks the opposite. Aswell endo doesn't think I have graves disease but my gp does because my anti bodies were high. So on this I believe I do. I phoned my endo secretary and told her that my levels are not changing and told her other stuff too so she managed to get me in next week which is good I have so many questions for him I have wrote it down. I'm thinking of requesting another scan do you think he will do it?
I find your GP's statement difficult to follow. A goitre is defined as a swelling of the thyroid. So if he accepts you have a goitre, it must be the thyroid that is enlarged. As to the cause, that is another issue. Even whether you have a goitre or some other swelling is up for question until proved.
It is possible for a thyroid to swell without any obvious impact other than that swelling.
A goitre (sometimes spelt "goiter") is a swelling of the thyroid gland that causes a lump to form in the front of the neck. The lump will move up and down when you swallow.
Thankyou I see my endo next week so I will ask for copies of all blood s he as done
To confirm you have graves you must get your antibodies tested. You can be hyper also in the beginning when have Hasimotos. Has the Endo given you any clue of what you might have?
Yes, ask for a scan but get more bloods done to test your antibodies....
I had antibodies for both Hashimotos and Graves...loads of them ie off the chart so to try and control the antibodies with diet would take too long and I was worried about thyroid storm....
You’ll need to get more tests done to find out what you have....
I will speak to my endo next week thankyou I need answers really.
I’m glad I came across your post as I can relate to a lot of it, I’ve been searching on this forum for someone with similar lab results as mine to get some insight but didn’t find it until now. My history is I have Hashimotos diagnosed after my first pregnancy 2 years ago, I’m now 6 months postpartum with my second baby and after a postpartum lab check I’ve now went from hypo to hyper with the thought that it’s possibly post partum thyroiditis. At my last blood results my tsh was -0.01, my t4 was 27.98 and my t3 12.14. Again with all the horrible symptoms of being hyper, the shaking for me is the worst it’s literally head to toe, severe brain fog and memory problems too. my vitamin d is also severely low at 9 so I know a lot of my symptoms are also from that (I.e severe fatigue).
My endos first response was to stop medication to rule out an overdose of thyroxine, my results were the same a month later so now that’s ruled out he wants to do the iodine scan and go from there. My antibodies for graves were negative so I’m assuming it’s thyroiditis but this is now 2 months later and I’ve had my blood done again and waiting on the results but I don’t think they’ll be much different going by how I still feel.
Not much advice as I’m new to the whole hyper thing im so used to being hypo but just wanted to share my story.
Hopefully we’ll be back to normal soon and hope to get updates from you after you talk to your endo again.
I'm so pleased you commented. Yes its totally horrible. How come your on thyroxine for a overactive thyroid/hyperthyroidism. I'm only asking as I thought that was for underactive? But yes up on reading your comment and what everyone else as advised me too I think I should be tested for hashimotos and I want my endo to check all my vitamin levels along with a graves disease test. The body tremors are horrible and when I get anxious oh my it's even worse I get brain fog too I get same symptoms as you I see my endo on Thursday so I need to write all this down. I want answers so then i can double think about surgery make sure it is the right option for me i have small children so rai treatment not good for myself. And looks pime your levels are very close to mine too and yes by all means I will keep you updated. I'll go follow your page now if you follow mine I think you will get a notification every time I post. Please keep me updated on yourself too
I was on thyroxine as I was initially hypo two years ago that was the first problem I’ve ever had with thyroid and I was put on 25mg thyroxine which was fine levels all then went to normal, it’s only now since I had my second baby 6 months ago that I’m now all of a sudden hyper out of nowhere, that’s why I’m hoping it’s just my thyroid acting out after pregnancy and hoping it will level itself off over time as I’ve hear this can happen, awaiting my blood results again now to see if there’s been any change. If not the dr will do the iodine uptake year to see what’s going on. Just a question is this also dangerous for having young kids or is it just the radioactive iodine? I have two kids 2 year old and a 6 months old so I’m worried about having the test with them being around me.
I j6st read about hashimoto's that's the disease you get when underactive so I think I dont need testing for that and as for the radio iodine scan I've had one of them I just stayed with my partners mum went hone after 24 hours. So if you can find somewhere to stay just for that 24 hours your little ones be ok. It's just the radio iodine why you cant be around younger ones but I felt fine after my scan so I wouldn't worry about the scan. I'm going to request another scan as I now have swollen lympth nodes along side my swollen goitre. And my levels are not improving even on the higher dose of medication so I have questions about that too my children are 2 and 7
Hi Kirstylstocks,
You might be interested in this article -
Thyroid Storm: What to Know
www-endocrineweb-com.cdn.am...
Thyroid storm is a rare but severe form of untreated or under-managed hyperthyroidism that may arise when the thyroid gland releases thyroid hormones suddenly.
-The most common trigger for thyroid storm was an inconsistant use of prescribed antithyroid medicines or stopping the medication use without any discussion with or agreement of the doctor.
-Infection, especially of the upper respiratory tract, was the next most common trigger.
Be aware of these signs and symptoms of thyroid storm:
o body temperature of 100 degrees or more
o rapid heart rate (tachycardia)
o blood pressure over 130 (top or systolic number)
o unusual or unexplained changes in consciousness, diarrhea, vomiting, jaundice.
While some of these conditions are more likely to point to other health concerns, if you experience some of these all at once, it is crucial to get medical help or advice.
-----------------------
I suspect I was on the verge of a thyroid storm in Jan. While I did not have my vitals taken, the sensation was like a shooting of pressure upwards and a hardening of arteries(?) in my neck, my shoulders were achy and tensed up, and at the worst moment, i briefly had difficulty breathing.
This happened despite my blood test levels being in range and I take my carbimazole as prescribed. And I can only surmise that there had been a sudden release of thyroid hormones which caused the freaky symptoms.
The reason for the sudden release followed a few months period of mental stress and anxiety, and physical stress, in the course of care giving as my mother was repeatedly admitted to hospital.
I believe I would have experienced a worser attack had I not been consistently taking my carbimazole.
But the manner in which the stress / anxiety effects accumulated over the months and popped up in the way it did, underlines the danger of Graves. Consistent adequate nutrition, rest, not over doing physical activity, limiting mental stress, getting away from stressors, staying well hydrated, these are all key to keeping the disease in check, short of a RAI or thyroidectomy.
All easier said than done.
And I totally empathise. You have two active kids, a job. I have a rather unwell elderly mother who depends fully on me. God bless us all : )
Hope you find resolve in these posts Kirsty. Are you any closer to a diagnosis?
Hi I have graves disease and my levels are improving but my symptoms are still there and not in work at the moment
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