Graves and Horrible Symptoms for years, time for Thyroidectomy?

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This is kind of a long one but I WILL REALLY APPERCIATE any input. I am 31 year old male and type one diabetic for 18 years. I was diagnosed with graves disease a year ago and was very hyper TSH <0.006 range - 0.450-4.500 , T4 5.61 range - 0.82-1.77 (no T3 test at this time, March 2015) I was put on 30mg of methimazole for about 3 weeks and then it was upped to 40mg because I was still hyper. I remained on 40mg for about 1.5 months and then discovered I was overmedicated went hypo. T3 2.0 range- 2.0-4.4 , T4 0.43 range-0.82-1.77 , TSH 38.120 range- 0.450-4.500 at this time I took a drug holiday for a weekend and then continued with 10mg methimazole for about 7 – 8 months and my levels were fine. I then found out my levels were creeping back up a bit and was put on 15mg of methimazole. And have been on that for 3 weeks and my levels are now normal again

My symptoms however are horrible and I feel like complete crap. Even when I went hypo I felt hyper racing heart, anxiety etc. There was a couple months after I got on methimazole where I felt good. I would say I only felt good for 2-3 months. I sleep fine and this is the best time I have symptom free.

I had an ultrasound last week and said my thyroid was all lumpy and typical graves looking thyroid.

My main complaint is dizziness and leg weakness I am not sure if it is related to my thyroid, but I know when my levels are off it definitely exacerbates my symptoms. I have 24/7 dizziness and am unbalanced. I will list my symptoms that have completely put the brakes on my life as I know it. Here they are:

Dizziness – like a moving, spinning, tilting, lightheaded, unbalanced feeling with head pressure

Feel faint and sometimes very faint like I am going to actually faint, but don’t.

Feel weak and sometimes feel like I am not even here

Feel disconnected feeling like almost my body is disconnected from me and a feeling of numbness in my body

Legs feel heavy, wobbly, uncoordinated, unbalanced and weak.

Legs feel stiff and like the ground is rubber or moving.

Sometimes feet and lower legs feel so weak they feel like they are trembling very slightly when standing.

When standing still like in a line at store or in the shower my legs feel weak like they won’t hold me up this feeling is in the lower part of my legs like from the knee down.

Standing in the shower with my eyes closed sometimes makes me feel Really off balance with my lower legs and feet

Hyper sensitive to any ground surface, even the slightest variation in the ground can kind of throw me off balance or make my feet and legs feel weird and off balance.

All my leg symptoms seem to happen when I am standing or walking

Get plenty of sleep, but sometimes feel very exhausted

Light headed / off balance

Sometimes have had free falling felling when I close my eyes.

A moving feeling like I am in a hammock

have light sensitivity where it feels like I have to shut my eyes like I am staring into the sun.

The light that affects me in this way are florescent lights. And walmart lights are the worst

Head pressure, Ear pressure that affects my hearing at times, Headaches

All these symptoms have been going on for 3 years off and on and each year seems to get worse and worse. Although I was just diagnosed with graves 1 year ago. During the first two years with my symptoms I did have my thyroid levels (well at least my TSH) tested and they were mostly normal with the occasional slightly hyper level that resolved itself.

I have seen several ENT’s and have a lot of balance testing done all normal. Cardiologist with eco being normal, have had tilt table test which was inconclusive, but later told most likely do not have pots. Seen I think 7 neurologist all of which best guess was Vestibular migraine and or anxiety except one said mal de debarquement and the other most recent saying psychological dizziness. A lot saying take an SSRI which I have not done yet because even moving my head back and forth or turning around now will make me dizzy. I am not sure if my graves are causing my symptoms or something else

Does either TT or RAI stop the disease process or most importantly the symptoms? Am I at the point where my levels cannot be stabilized with methimazole?

I know what the anxious heart punding hyper symptoms feels like, but my main delay and problem is I am not sure what is causing the rest of my most debelitating symptoms and if I would still have them regardless if I had a TT or not?

I am kinda between a rock and a hard place. I am not sure what to do from here if I want to continue the methimazole to I guess only band aid my problem and hopfelly go into remmision or if I should do a thyroidectomy? I do not have a strong voice to begin with and do not want to lose my voice or have it be weaker.

I have heard a lot of people not even have any success with RAI, need more than one round or feel awful after anyways or even have to have TT after RAI. Also read there are a lot more yo yo symptoms and stabilizing times with RAI. I want to be DONE with this and get on with my life.

Any input from anyone with experience or knowledge on this would be great, thank you

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  • Posted

    Hello Ty:

    My name is Shelly and I am a nursein the USA.  I have Hashimoto's Thyroid disease.

    So I understand your symptoms, manyare Hyper ones such as: Anxiety, feeling palpitations and heart racing, nervousness and dizziness.

    Hypo, feeling sleepy, weight gain, brain foggy, unable to concentrate.

    Here is my sage advice:

    1) Keep your thyroid and lower the dose of Methimazole.  It is not good to be overmedicated on it.  It works well on a lot of people and most people are on 10-20mg doses.  40mg is a lot.

    2) Partial Thyroidectomy is 2nd.  It is a good option.  Half a thyroid is better than none.  You may find the other half will settle down.

    3) RAI is the worst.  It was designed for Thyroid Cancer and kills off all thyroid gland tissue and lumps.  However you will become Hypo and it is not easy taking medication and getting the level right.  The medications were made for people with a thyroid and without a thyroid you can not absorb it well enough.  read posts on here from others about this and how they regret it now.  It is a permanent thing and no second chances. T4 then has to be absorbed in the liver and bowels and other organs have to try and make it work, and it is very hard to get that to happen.

    It is not easy to be Hypo either and it can make you worse off.  Please research this on this forum.

    if you are dizzy a lot (vertigo) ask your doctor for Antivert a medication that controls it. 

    Any questions just ask,

    Shelly

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    • Posted

      hi shellyC19.

      this is where i'm at now - seriously considering an RAI out of fear of stroking out cos of the palpitations, fast heart rate, not normal heart beats, anxiety and what i'm told are panic attacks. though I am supposed to be euthyroid on 2.5mg carbimazole daily, most of the more serious symptoms have occurred when I am euthyroid. my body seems to have become unable to process stress and instead accumulates it which then comes out months on in a panic attack which messes up my heart. i am seriously suspecting that the hyperthyroidism, though controlled, is exerting other effects???

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  • Posted

    I have Graves , my sympathies.....i get nauseous, anxious and irritable.

    I'm concerned your dizziness hasn't been addressed by a specialist for you by now....keep at them for a referral and /or anti vertigo meds,l,,you shouldn't be left to suffer like this, but you're not alone, we are here x

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  • Posted

    I had almost exact same symptoms as you (Graves with tsh of .001), and methimazole didn't even work.  I was up to 60mg and my t4 and t3 kept going up anyway (thought I was dying).  Many of your syptoms are adrenal (which almost always goes hand in hand with Graves).  Autoimmune issues usually strike multiple glands.  Anyway, I was desperate and started doing a juice fast (carrot, beets, kale, apples, etc).  Also ate a dark green veggie salad with homeade dressing every day.  Within three weeks I was feeling human again and all my numbers were in the normal range (tsh is still going down).  It's pretty difficult in the begining but gets easier and is so worth it.  I was taking 220mg propranolol four months ago and now am only on 40mg in the evening (which is only because of adrenal issues).  If I hadn't gotten my t4 and t3 levels down to normal, I never would have discovered that I had low cortisol and increased adrenaline.  No doctor ever tested that until recently.  Anyway, I also take magnesium, zinc, selenium, and vitamin C (but none of these help as much as diet).  For sure the most important thing is to cut out ALL grains, dairy, and sugar.  It's not forever but you will feel like a new person. Best of luck.
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  • Posted

    Thank you for responding everyone.

     I want to give an update. So today 3/3/16 I went to the gym to try and exercise I did a couple back exercises. And started feeling horrible pretty fast, like 20 min max. I left the gym and my heart rate just kept increasing. (I know because I have Samsung S health and a heart rate measure on my phone) about 1 min after driving I was freaking out and felt I could not drive. I pulled over to let this pass. Well after about 15 min of sitting there my heart rate went up to 160. This is the highest it has been since diagnosed with graves. I called my friend and had him call the ambulance because I was so light headed I felt like I was going to pass out or just die. I called the ambulance back and told them not to come and he came and got me. My heart rate came down to about 120 for hours after. I still feel horrible and simply can’t really do anything. The next time if this happens I don’t know what I will do. I called my doctor and told her what happened and she ordered a test ( I think just TSH) stat to see if it is possible thyroid storm. I should know tomorrow or Mon these results.

     

    My doctor mentioned to me that she could prescribe beta blockers for all these tremor, heart rate, palpitation type symptoms, but I am type 1 diabetic and cannot take these because I could not feel my low blood sugars. For example sometime in the middle of the night my low blood sugar will wake me up. If I was not able to feel this I could die, so I am not going to take these. 

     

    levana12656, I already eat pretty healthy, I drink a lot of mixed berry shakes along with spinach and bananas and a pretty high quality protein.  but I will try this and would be very interested if it was a special program or diet? Do you have a link or any more info in this diet? How are you feeling now? How did you know your adrenal levels?

    And my t3 and t4 (as of two weeks ago) are both in normal range.

    shellyC19, So I am only on 12mg now. My doc says that she won’t leave any behind. She said even if 1% left behind it can go hyper. I don’t know if I really believe that. I will ask her again and especially leavening like 10% around my vocal cords. If I do have surgery, I do not want to have to have a second.

    As far as my dizziness I have seen 7 neurologists and yes I have tried antivert and it does absolutely nothing  for my dizziness an actually just knocks me out for like seriously 30 hours.

    I will not do RAI because of everything I have read about it. And yeah I don’t want to feel horrible hypothyroid either, so it looks bad either way, just wondering what is worse. Especially after today. I think if I leave it will end up damaging my heart and other organs. I dunno though.

    Also I did get my other TSI labs back and that is 162 which is high. I can’t really tell the range? It says <140 % baseline

    Thank you everyone for all your help.

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    • Posted

      Hello Ty:

      Please do not do exercise while Hyperthyroid with Graves.  Exercise increases the heart rate and can place you so high in heart rate that you could have a heart attack. Exercise tends to raise the heart rate and in a normal thyroid it would return to a normal pulse rate but not when Hyper or Graves.  It also can raise your Blood Pressure too high and you could have a stroke.

      I would go with the surgery if Methimazole fails, but most people need a bit more than 12mg, esp. TSI is higher than 140%.

      I understand the Diabetes esp. Type 1 and the ability to control blood sugar and try to keep your thyroid in check.  I think if you have the surgery the dizziness will go when they remove the thyroid.

      Get the best Endocrine Surgeon and they know how to remove it, and what they are doing.

      Please keep us posted on how you do,

      Shelly

       

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  • Posted

    Hi Ty,

    I totally agree with shellyC19 - do NOT exercise when you are Hyper/Graves (I am Hyper/Graves diagnosed 2.5 years ago).  Any exertion just makes many symptoms much worse especially heart rate/blood pressure and this in turn causes you to become more anxious/stressed !  Just doing light housework or going up a flight of stairs/lifting things does the same to me although I am now starting to feel better.  One endocrinologist refers to this condition as "your body being in crisis and that's exactly what it is" !  So even though you may feel as though you are being lazy and think others will think the same of you, you MUST take things easy and take small steps forward as and when your body tells you it is capable of it.  It's a vicious, horrible condition and as if the symptoms themselves aren't bade enough, I have been over mdicated with Levothyroxine (I also take 40 mgs Carbimazole) and over medication has caused palpitations/anxiety/breathlessness.  I have ony just recently taken it upon myself to reduce the Levo from 100 micrograms daily to 75 micrograms every other day and after 3 weeks the symptoms have almost completely disappeared (keeping fingers crossed that it continues).  I see the specialist in April and am interested to hear what he has to say about it.  I don't think I have been looked after particularly well by GP's or Endos because they don NOT listen to how the patient is actually feeling and just medicate on blood result ranges.  All in all, anything and everything I have learned about Graves/Hyperthyroidism has been through forums like this one, reading about it on every available website and from knowledgable people on here - no-one in the medical profession explained ANYTHING including the fact that I actually have Graves - I was told this 2 years after being diagnosed Hyper BUT I had to ask !!!  So Ty, take it easy, read as much as you can about this condition AND ask lots of questions when you see your GP and specialist.  Take care and keep us posted.

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  • Posted

    Ty, the moderator is deleting my posts where I talk about diet and which ones are good.  All I can say is search the web for raw and juicing and options will come up.  If I didn't know this would cure (or at least put people into remission) I would want someone to tell me!  Shouldn't we let people know if something has truly worked wonderes for us?  Anyway, good luck.
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  • Posted

    Thanks for the replies.

    So what I do not understand is for the most part my thyroid levels (TSH, Free T3 and Free T4) are normal and controlled with methimazole, but I am still having all the hyper symptoms??  I guess if I have normal levels why is this still happening? Is it the antibodies that are causing the symptoms?

    so after you have a thyroidectomy are you constantly adjusting the dose or different type of meds? I have been reading around and have learned/read a ton of stuff like bad experiences with RAI and trying to learn as much as I can. I will continue to read and search around.

    If I am very symptomatic with normal thyroid levels now, then having a total TT would I be in the same situation?

    shellyC19, You are on LEVO right? and is your meds sorted and if so, how long did it take to get sorted?

    Thank you everyone for all the help

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    • Posted

      Hello Ty:

      I am on Cytomel (T3 only also called Liothyronine)  and I can't take Levo as I can't convert T4 into T3 because I have a damaged thyroid from Hashimoto's disease.  I was on Levo back in 1987 and I was not aware back then I had a problem converting T4 into T3 back then. So my TSH was always Hypo while on Levo.

      The antibodies in Graves & Hashi's are 24/7 and do not stop. It takes many of years to cause damage.  Flare ups are better controlled by taking out Gluten in the diet. 

      Carbimazole reduces the thyroid out put but can't stop all of the symptoms from happening.  As long as you can control the thyroid you may see a reduction in the bad symptoms. Sometimes a person may need a bit more Carbimazole dosage.

      Since I had a problem with T4, I went years from 1987 to 2009 on different thyroid meds, such as Levo, Liotrix, Armour Thyroid,(sadly these all have T4 in them), then cytomel which is only T3.  All the Endo's I saw were in favor of Levothyroid, and my body could not take it.  My GP was more understanding and figured a lot out on what was happening to me.

      It can take time to find the right med and the right doseage for you after a thyroidectomy.  Most people find that the Natural ones like Armour Thyroid, Thyroid  S and Nature's Thyroid are more agreeable to a person since they are better absorbed and are made from a Pig's gland which is close to our human one.

      Any questions just ask,

      Shelly

       

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    • Posted

      Thanks Shelly, yeah I do have some questions lol.  If my levels are in normal range with the methimazole I am taking, how can I still have all these symptoms? I guess what could be causing it?

      So if you have a total TT and are just given T4 would it show you are hypo when really you’re not?

      If you have a total TT and are just given T4, can you convert that into T3?

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    • Posted

      Hello TY:

      Great questions! 

      If you have a total thyroidectomy you will have to use the liver, intestines and other organs like kidneys, pancreas, etc.. to make the T4 work.  Many of these man made meds, were designed for a thyroid that was low or Hypothyroid.  It may take longer to get the level correct but it can be done.

      Methimazole just helps to slow down the thyroid gland, it does not stop Graves. Graves is autoimmune and what happens inside with the thyroid  does not stop it completely. The disease can go into remission and slow but the only true way to stop it is to remove the thyroid. 

      So symptoms can still happen but should be reduced a bit by the Methimazole. Autoimmune disease like Hashimoto's and Graves have antibodies that can be made to flare up by Gluten, & Stress, and these antibodies are hard to calm down. 

      If you have a TT you may will become Hypo by way of the removal of the thyroid gland, so because of the Graves and then the removal of the thyroid you will be on life long thyroid hormone, and will be considered  "Post Thyroidectomy Hypo."  Once you are at the right level of thyroid hormone you should be stablized. That is the tricky part getting the right med for you. Some people need the Natural ones like Armour Thyroid and Thyroid S and Nature's Thyroid.  Some people need a combo of T3 & T4.  Of course blood has to be drawn in 3 month increments and then meds adjusted.

      Any more questions just ask.

      Shelly

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    • Posted

      hi ty31825.

      this is my question too - could the antibodies be causing the symptoms?

      if yes, then becoming hypo should solve some problems??

      my TraB is still high tho i am euthyroid

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    • Posted

      Hi long yes high antibodies does give u symptoms I'm euthyroid from graves diseases since last year but I still get the symptoms when I get the inflammation mean antibodies attack some ppl says going gluten free diet helps reduce antibodies and to be honest with u becoming hypo won't solve this problem bcs hypo patients suffer too bcs of the adjustment in their dosage and doctors have limited knowledge about thyroid u have to be ur own doctor learn as much as u can abt thyroid ask ppl here on forum they will help u more than a doctor add all the supplements you r deficient in adding those will make a lot difference that's what we all doing bcs after having an auto immune disease u loose lots of minerals and vitamins and doctors have no knowledge abt these nutrients that's even my GP admitted that they don't know much so get tested for vitamin d ..b12...ferritin..... Folate....selenium .and if you r deficient in these ask doctor to prescribe these or u can get them from health shop bcs with me I was keep going back to GP but they keep saying that blood results are in normal range when I checked my ferritin level in my medical record it was only 19 and range is 15 to 300 but bcs its within the range they won't take action becoming hypo or getting rid of ur thyroid is not the solution start another new post with ur blood results and then ask here with lots of knowledgeable ppl like Linda Madge and Dan named few of them God bless them they will help u a lot I hope and pray u feel better soon .....luv samy

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    • Posted

      Sorry ling was trying to write ling auto keypad mistake sorry
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    • Posted

      thank you Samy3 for sharing : )

      what kind of symptoms do you still have?

      thank you : )

       

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    • Posted

      I still become dizzy and this happen when I get the pain in my throat where I had goiter on right side and that pain radiates to my ear and on right side head and eye .....headache and my blurry eyes these r the symptoms I still get and I know its bcs of inflammation but doctors won't treat me bcs my blood results for thyroid are in normal range but since I got thyroid problem which was last year after I had my daughter Im getting different issues recently I got stomach gastritis issue which I been diagnosed like I said in medical field doctors have less knowledge abt thyroid they don't understand how sensitive is this organ which can give lots of symptoms to a person ....but there s always a light at the end of tunnel don't be hopeless try to get urs vitamins and minerals checked and add them to ur daily diet and I hope u will feel better soon

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    • Posted

      Sorry forgot to ask u said u r euthyroid but still symptomatic what symptoms u r still having?
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    • Posted

      hi Samy3.

      inflammation yes, I've that too. affects especially my right eye. usually when I eat too much eggs or potatoes and some other foods.

      most of my worst symptoms came out when I am euthyroid : (

      earlier in the year, I had my first "panic attack" or at least that's what my GP's calling it. it came about after a period of juggling care-giving to my mom and work. funny thing was that it wasn't anything out of the usual and when my heart fell out of beat, it was completely unexpected and freaky.

      then this month it happened again but  was a worser attack with the heart beats not only pounding, it also became disorganised and ya felt like gallop beats for a bit. i took 10mg propranolol cos tho i'd no idea what the hell was causing it, i felt my heart needed to be calmed down, and i was afraid it would not do so on its own. Again it was an out of the blue attack. and yes, it came on the back of a very stressful few months at work.

      in between the 2 attacks, i had an episode of severe insomnia and weight and muscle mass loss. also very freaky and for which my GP was most unhelpful and suggested it to be menopausal symptoms and other conditions??! of course my thyroid blood tests were within range so he would not adjust the carbimazole and dismissed the symptoms as non-thyroid related. frustrating.

      on hindsight, it was probably the stress which triggered the episodes tho it is upsetting to note that my body seems no longer able to tolerate or take stress as before. and yes i seem to have developed pretty bad anxiety as well especially during these last few months. my mouth would dry out very quickly and my tongue would feel very tense and stiff along with my neck muscles.

      with regards my heart symptoms, I am now wondering if it could be due to my fluctuating thyroid hormone levels, in particular T3.

      and perhaps these attacks could be when my T4 fall too low and I am in a hypo state???

      the heart symptoms worry me the most as i'm afraid of getting a stroke from an irregular heart beat

      and yes I am wondering if my graves is poorly controlled tho I am euthyroid ???

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    • Posted

      That's what exactly I had gone through long same symptoms yes my hear was the main thing which scared me alot then after keep rushing to doctors they did 24/48/and 72 hours ECG ....all normal then one of the GP did send me for the scan if my heart was normal but yes I was getting intermittent fast heart beat and insomnia ..but things did calm down a bit when I added supplements in my daily intake especially b12 and ferrous sulphate made a lot difference I just stopped taking ferrous sulphate bcs my GP does nt want me to take iron tablet for longer term but I'm taking other supplements and yes a good probiotic when CH makes big difference ....yes vision on my eyes has messed up since last year when I was diagnosed in may never wear glasses now I do and it still fluctuate but soreness and irritation has become better after adding selenium ....and to be honest with u doctors only pay attention on tsh results if that's normal they says ur euthyroid but that's the case for a healthy person without any thyroid issue we have auto immune disease so they need to pay attention on ft4 and ft3 results too bcs I have learn that both should be near high in the range but I think none of the doctor understand this so u have to be ur own doctor try adding supplements in ur diet get them tested first I hope u will start feeling better ....post ur latest blood results here and then ppl like Linda....Madge......Dan....will help u with those supplements I hope u start feeling better soon lovely ......samy

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    • Posted

      hello Samy3. sorry for the late reply.

      many thanks for sharing : )

      what does CH stand for?

      thank you : )

       

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    • Posted

      ok thanks!

      how has the probiotic helped?

      btw do you get a tremory feeling?

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