Overactive thyroid and thyroidectomy

I'm tired of blood test every 3 months, still staying on carbimazole nothing really changing with my health.

cannot lose weight even I am on diet of 1400kcal so actually I lost 1.8kg in a month. thats really like nothing. 

my hair still falling, Iand tiredness...I could sleep all day every day. I didn't want to RAI so I decided for surgery. 

Those of us on this Board who have succeeded did not just rely on our doctor's advice.  We took responsibility for ourselves and researched a lot and found that when we incorporated what our doctors don't know that we got the results we wanted.  For myself, I was determined I was going to keep my thyroid because I have relatives who have had radiation and a relative who had thyroid cancer and had no choice but to have her thyroid removed and neither of them have felt normal since.  The thyroid cancer relative had to have stomach surgery to lose weight and follow a very strict, no carb diet..

Hi, 2 years back I was diagnosed with hyperthyroidism. It was during the my annual health check-up when I was diagnosed with rapid heart beat 109 BPM. Then my GP advised me to get the TSH, T3 & T4 checked. The results was clear cut hyperthyroidism my TSH was low .05 and T3& T4 was high. At that point of time I realised that I have all the symptoms of hyperthyroidism which was going on unnoticed. Immediately doctor prescribed me 10mg carbimazole and 20 mg Inderal . After 3 months t3 and T4 was back to normal however TSH remains the same also i discontinued inderal. I started gaining weight as well. Then after 3 months I resorted to 5mg carbimazole. The thing which worried me is my TSH never improved and remained low in these 2 years. However 2 months back I consulted a very good endocrinologist and she recommended me B folcin one tablet daily and advised to have almond and walnut and fresh fruits and vegetables on daily basis and little bit of walking and yoga. Now my TSH is in normal range on lower side. I want to share this with everyone for their benefit. In case you want to get in touch with me please write to me on I will be happy to help you. Please expect a delayed response as i check my mail once in a week. I m from India. Also please note that the above advise is purely based on my case and it's not an professional advise.

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

That’s Winderful  Sonu  well done  you  .. and of course , you’re amazing Endocrinologist 

She certainly put you on the right path ... Indian medicine and health solutions , are i my opinion ... the BEST !

I wish that more people would read about it and learn so much 

My Indian friend for

Example ,  is a Pharmacist and her parents are 

Naturopaths in India  and I love their way of thinking .

She recently gave me a great tip if we have to Take D3  then we should take it at night  with or just after our last meal  with fat or oil ..

Vitamin D  is a Hormone  actually and not  strictly a Vitamin   !!  And  many people aren’t aware of that.

So long may your good Health last suno...  please give any more advise that you think  could help any of us ......

Advice is always welcome 

Best of Luck 

Mx🌹

Ps  I’m not familiar with

what  B folcin  is .. please enlighten me  🦋

Vit D is very important for good thyroid functioning.  Mine was low and a lot of other thyroid patients report low vitamin D values.  For myself as a Graves patient, though my Free T3 and T4 were right in the middle of the range, my TSH would not rise on the dosage of Methimazole I was on that brought my Free values down to that range. The fact that yours did made me think you may have Hashimoto's.  If this is true, it is better managed by Regular L-Carnitine rather than Carbimazole.  I prefer my TSH to be around 1.5 and I make adjustments to my meds or supplements if it rises higher than that.  What makes me think that you may have Hashimoto's is how much your TSH has changed and how high it rose to on your treatment.

Hi Linda, (not trying to cause trouble, but...)so because you know 2 people who had problems after thyroidectomy, does that mean everyone who has surgery will also have problems?

I had a thyroidectomy in September and my values are now stable.  Also, all the horrible symptoms I had prior to surgery (some I didn't even know I had till they disappeared after surgery) are now gone.  Is there something I'm missing?  Am I headed down a road of nothing but problems for the rest of my life?  My endo tried to work through the issue before resorting to a permanent solution but when we found out I had toxic nodules not caused by an autoimmune disease it was decided that RAI or surgery would be best because the nodules would never go away and although I might have good periods of time (not in the last year or two) the attacks by the toxic nodules could happen anytime without warning.  Every person reacts differently to surgery and there are more than 1 med to try to feel better.  Now that I no longer fear what I read, I try to be objective when I read the posts in this room.  And yes, I did a lot of research prior to surgery.  My dr wanted me to do RAI, I chose surgery because I didn't want to repeat the procedure if it didn'g work the first time.  I agree when you tell people to do research but I don't agree when you just give bad stories about others.  There are two sides and I'm only reading 1 when i read the responses.  Contrary to popular belief, the world as people know it, will not come to an end after surgery/rai, they will be on meds and go back to living normal lives.  Sorry, I've been quiet for a while, but I can't be when people are told nothing but horror stories.

I believe sophieannehas got some point here as Marta didn't mention the type of hyperthyroidism she was diagnosed. If it is caused by toxic nodules, at the sepecific condition, surgery may be the last or best choice to take. But in Marta's case, we don't know...  

Most doctors,  will not prescribe any other hormone replacement other than Levothyroxine and many people do not do well on this.  Certainly there are some thyroid diseases you have no choice for other than to have surgery.  However, the lady was choosing surgery because she didn't want to get labs tested so often and people who have had surgery have to get lab tests too to make sure their levels are optimal.  And her other problem was weight gain which again could be a problem with removal, depending on what the cause of her thyroid disease is.  All I would say is research it well and know that it is not a reversible decision.

Not trying to be difficult Linda187 but  your comments are speculative.  Perhaps people who have been on this chat site say the same thing about their doctor but there are thousands of people taking Thyroid replacement drugs that do have good doctors.  I did not do well on the generic Levothyroxine but was switched to Synthroid (brand name) because  when I talked about my problems while taking it, my endo knew that some people (like myself) will react to the dyes in Levo. I wasn't told, sorry that's how it is, end of story. I'm on  a 50 mcg pill  which is taken a couple different ways during the week to equal 88 mcg/week.  Why? Because the 50 mcg does not have dye in it, which was the cause of why I had problems with it.  A lot of people don't even know that fact. So as someone who has been lucky to have an open minded endo, I find it hard to believe that MOST doctors won't prescribe anything other than Levo.  My doc also said if this didn't work I could try natural meds.  As for blood tests, yes when you're starting the replacement hormone, you are tested every couple months until you find the amount that puts your numbers into range.  In my case it took 1 adjustment after I started.  My testing will now be done yearly just like every other routine blood test that is done yearly And you're right, and as Mike said, we don't know why the doctor is thinking surgery is for her.  The doctor WILL NOT do surgery just because someone doesn't want routine blood tests - there has to be a medical reason.  I agree about doing research because it's not a reversible decision.  But scaring people to decide not to do the surgery/RAI, could cause their problem/symptoms to worsen even to the point of letting cancer (not that this is the case) spread and then the  treatment is more involved.  I agree to tell people to do research but basing your comment about problems with 2 people is wrong.  Everyone knows that hyperthyroidism causes stress/anxiety, scaring them only makes it worse. I made my decision after staying out of these rooms and doing research.,  I can't base what happens to me on what has happened to a select group.  Sorry Linda, no disrepect intended but there truly are 2 sides to every situation. Look at the cancer thyroid room if you don't think what I'm saying is right, there are a lot of people who fought to keep 1/2 a thyroid only to have that half turn bad on them.  I agree people should try to keep their thyroid, but when it  turns on them (and attacks with nasty symptoms) and doesn't turn around with supplements, etc. sometimes you have to accept it is what it is.

In my personal experience only ...    in my  family that is ... 

from my Grandmother , my Mother , my three sisters , and their daughters 

My two cousins and one of their daughters .. we all have had Thyroid diseases 

Graves 

Hashimotos 

And HYPOthyroidism 

Therefore all different and varied ..

None of them has had treatment that has cured their conditions 

But are taking meds which help.

... in the Hypo instances it’s been an ongoing slog to get the right balance of meds for them to be well again and balanced .

Hashi  is balancing as best she can but dealing or trying very hard dealing with excessive weight gain..

My cousin who had her thyroid removed because of goiter has never really been treated with the right meds ... and has struggled for forty years.

My sister who has had Graves as a young girl and then became Hypo has had a terrible struggle with her weight and Health

 ( She )  says   ( not me )  

because her Doctor   knew  nothing about Thyroid disease ......and she could never get the correct balance of Thyroxine to become well and did not get any information in those days as to how to help herself .

I simply have .....Graves’ disease 

About three years ago.... I was very ill indeed but  .. text book treatment with high dose Carbimazole to begin,   then lowering to 5mg  put me in the right place numbers wise !

...and through research decided I would treat my Immune System

.... since it is

NOT the Thyroid which is doing the attacking ...  it’s the IMMUNE SYSTEM !

So I fed it all that I thought it had lost through the period of being ill with Graves before diagnosis 

So Carbimazole and natural vitamins and minerals have , thank God brought me to where I am today ..

I am certainly a success story .. so far ...  and I will try to stay that way by continuing with supplementing my Immune System .. my aim is to calm it down .. so that it leaves my body in peace and ....  BALANCED.

Now .. I am perfectly aware that Mist  success stories get better and then disappear back into their lives and get on with living

.. and that wonderful !

But there are many who just never get it right and suffer ... and they come back here fir much needed help ... and they usually get it .  That’s what this is all about ..    WHERE WE HELP EACH OTHER ..

Linda gave you two examples .. but she didn’t say .. that’s what happens to Everyine who has surgery .. far from it !

If I wrote the details of my family’s miserable situations with Thyroid disease you’d be upset .. so I won’t frighten you or anyone else ..   

I have not read on here to my knowledge  ... ANYone write any Horrir stories by the way ....really I haven’t .

we all know and accept that if you have toxic nodules and/ or thyroid cancer .. then you are most likely to make the correct decision and that is likely to be RAI or SURGERY .. and no one would try to dissuade from that .

All we would say is that if you have  Graves’ disease like mine which was very serious,  but easily put in place with Carbimazole or another like it ,

Then there is a very good chance that when you’re numbers are back in line ,   You can work at it to keep them in line by feeding and strengthening  your Immune System  which is   THE CULPRIT

That’s All 

I wish you the very best of Luck on your journey to great Health and that you stay that way .. Always 

M 🌹

Thats the funny thing that being hyper and I got all symptoms of hashimoto syndrome and back in november my endo said I got graves basedova - which symptoms I dont have at all... Smh... Like weight loss... Yes please I wouldn't even complaint then

Monday 22nd got another blood tests so will posted in few days how it goes

Hi Madge and thank you for your note.

I appreciate what you have written and understand how this room is trying to help.  In a lot of cases there is underlying auto-immune disease, such as hashimoto and graves disease.  And there are the others, like myself who were attacked by toxic nodules.Every story is different.  All I was trying to say is unless you know the facts of a person's situation - autoimmune or not, what their treatment has been and how they've reacted, etc., it's not right to put the person into fear if a surgery or RAI has to happen.  I had that fear put into me when I came here and now that I've dealt with it, I don't appreciate reading others being told fight for your thyroid, rai/surgery is permanent, etc.  Yes those facts are true but until you know all the facts of a person's case, don't scare them.  Even you've written there are times RAI or surgery is required.  Even if you do keep it, your life can be a living nightmare, not everyone finds the magic cure to keep things under control.  Again all I ask is give suggestions, offer ideas but don't jump on people scaring them about RAI/surgery unless you know all the facts.

Other than I have to take  a thyroid replacement med everyday, I don't know what other things can happen. If I didn't have surgery, I don't know where I would be today...the symptoms were deadly.

Thanks again Madge I do appreciate/respect your note.

Sofieanne 

With respect to you ...

I may have misread your last mail to me .. but have you honestly read anything that I have said that you would describe as a horror story  .

have I frightened anyone or jumped on anyone scaring

 them ?

If the answer to that is Yes ... then you are without doubt the first person who accused me of that 

If the answer is no .. then your inference is discrediting me  and my intention and wish to help others through the maze of Graves’ disease .and all associated with it ..  and I’m deeply hurt by that .

If someone doesn’t give all the facts , as you say , then it is sometimes difficult to give a proper and quantified answer . 

... so maybe you are correct in some way

All I know is I was so seriously ill with Graves .. it most certainly almost cost me my life !

Secondly,

  when I was in grave  danger of having Thyroid Storm 

But 

Firstly   ..

.....when I almost took my own life through fear and anxiety ..

Even though I have a wonderful life  with a wonderful husband and family 

That’s how serious MY situation was !

And I promised myself that because of people like Linda and Dan who gives selflessly to others in need .. that although I had been a success story

( so far ) 

That I would come back on here and share my  experience  with others  .. in an attempt to help make them well again ...

like I am right now !!

So you see ..  we will never know what another has come through 

On this journey ..

not until we  are told by that person and share it ...  on here  perhaps 

Not one of the good people who are on this particular site

  ( Hyper and Graves   has ever to my knowledge in 3 years 

Frightened or jumped on anyone to frighten them .. it woukd just not be tolerated ... 

and no one did that to me ..,

Quite the opposite in fact 

I have been shown kindness and 

Generosity of spirit in every way 

Good luck Sofieanne.. 

and I wish you nothing but good health and happiness 

Luv mx🌹

In  one way  you are 

Hi Madge,It might have been how I wrote my note, but that "fear" comment was not directed at you; I totally respect and can relate to what you wrote.  All I was saying is when someone new comes in the room, we should listen to what they say and offer support, encouragement and suggestions for what testing to have, alternatives, etc.  I don't think (if we don't know all the facts) that we should start out saying save your thyroid at all costs.  In many cases (including my own), it's not possible.  When you are in a hyper state, the fear/stress level is so high that you fear a lot of things you hear or read.  When I read a similar comment, it made me even more afraid and if i didn't go through with treatment I would've been the one attempting suicide.  It's not a crusade to save thyroids, it's a mission to help people.  I think it was great your shared your story and I can relate.  You didn't jump on me and say saving your thyroid is the only way to go. I just think people should be mindful of other's situations and be aware of what they know/don't know - not automatically say you must save your thyroid.  Sorry for highjacking this thread, I've been watching and watching to the point I had to say something.  I don't want people to suffer because they think they're getting bad advice from the doctor.  Not all doctors are out to hurt people and not all doctors are not caring and understanding.  I don't think i can say anything other than people need to offer advice but be aware you might not know the whole story.  Again, my comments were not directed at you.  I appreciate and respect your comments and willingness to share.

and thank you to the moderators for reviewing what I write.  It's ok to scare people but it's not ok to speak out for the people who are being scared.

I disagree entirely ...

suffice to say we are coming from different 

Viewpoints .. 

my experience on here has been nothing but Positive in EVERY way ...  

not EVER  did  ANYONE  on this site EVER  try  to push me in any way ..  towards what route I should take to get better .

Maybe the difference was ..

that ........

before I came on here I ALREADY KNEW ...

....that if you remove a Thyroid Gland ...

and do not replace it with EXACTLY  the amount of Thyroid Hormone that it needs to make the body function as it did before the Thyroid Gland was Compromised by a Faulty Immune System , then you are in danger ..... 

and the longer it takes to find that precise amount of Thyroid Hormone  to give your body .... then the more danger you

are in ....

As your body will start to suffer in many ways ...

because the Thyroid Hormone is found in every cell in your body ..  and It is needed there in order that those cells and your other organs, muscles and bones etc etc are able to work in a balanced and coordinated fashion as it was designed to do from conception and birth .

All that..... and having watched my lovely sister suffer for many many years with Thyroid

disease (s)  made me realise I would keep  MY  Thyroid Gland 

..... as long as it was not cancerous , or such like,  that is !

I  personally am so happy I was able to keep my Thyroid Gland

as I prefer to think I still use my own  thyroid hormone and not a synthetic , that may not even  suit my body..  

so for that I’m grateful.

I was in pieces when I came on here ..

 I knew what I wanted to do .. but did not know how to actually do it !

But I gleaned all the info I could .. I researched alone ..gradually I knew I’d made a plan .. and I then carried it through .

I will never be able to repay the kindness and help that I got here ,  from 2 people in particular , although many gave very good advice ...

those 2 were Linda and Dan ..    quite literally,  they are 

so  amazingly knowledgeably and generous with that knowledge .

I repeat .. I have Never read anything on here  that makes me believe that  Anyone would even try to frighten a fellow sufferer .

Quite the contrary !

This is NOT a place for scaremongers to ply their trade it’s a place where fellow sufferers gather ... in order  to help one another and share positive .. or even , sometimes negative experience s.... but we’re all on the same road .. and we all share a common goal 

To be kind and help each other 

Get through this  maze of health issues that we call Thyroid disease ...

Good luck always

Mx🌹

Madge - please calm down.  This is not a contest of who is/isn't right.  I'm entitled to my perception just as you are.If I read something that triggered me, I'm going to say something.  I'm on the side of people who have no choice.  Sometimes we're just looking for a glimmer of hope or a kind word.  Of course we'ld want to keep our thyroid, sometimes though it's not possible.I delayed while doing research and consulting other health care professionals.  It was hard.  I thought my life was over because i had to have surgery. It's not. Again, my apologies, i never said a negative word about you.

Enough 

Madge,

Didn't mean to send the last note.  Wrote it and thought I hit delete.

TRUCE!!!!!!!