Graves and Horrible Symptoms for years, time for Thyroidectomy?

shellyC19 ty31825 · 2016-03-03T08:33+00:00

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

jan.h ty31825 · 2016-03-03T09:07+00:00

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

levana12656 ty31825 · 2016-03-03T22:02+00:00

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.

ty31825 · 2016-03-04T02:46+00:00

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

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thank you everyone for all your help.>

christine57219 ty31825 · 2016-03-04T08:20+00:00

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.

levana12656 ty31825 · 2016-03-07T15:23+00:00

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.

ty31825 · 2016-03-07T18:34+00:00

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

Graves and Horrible Symptoms for years, time for Thyroidectomy?

ty31825

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