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Life after total thyroidectomy
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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Life after total thyroidectomy

Hi, I Have just joined the site as I am trying to find out more about life after a total thyroidectomy, I have graves.  I had my op in August last year, I was really scared, I have never been ill in my life let alone had an operation, having your tummy cut open is one thing but your throat!!!!  The op went really well and I was suprised now little pain I was in after the forst 24 hours. I have been feeling much better, before I started treatment my moods were terribel and I was always close to tears. My job can be very stressful and I can no longer seem to cope with it. I thought by now I would be back to my strong normal slef but I still don't have the same physical and mental strength I had before.  Also one of my eyes is still a little bit poppy.  So, will I every be the strong full of fight person I was before?  I am 40 this year, I live alone and I am just about to give up my job in a bid to keep me sane!!!!  can anone out there shed any light on all this for me as I am no longer seeing anyone other than my GP now and then for blood tests (last time he said they were fine)

HELP this mad old English woman
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213044_tn?1236531060
The problem with thyroid blood tests is this;
there is a very broad range set for TSH lab limits.

If you're in England, the lab ranges and limits may be different, but I think they are close enough that you will understand what I am saying.

My lab uses a TSH reference range of 0.34-5.0. This is what happens. If my TSH measures at 4.0. many doctors will look at the results and think my TSH is fine. But it is not. My TSH needs to be around 1.0.

Everybody is a little different, and every one of us needs a TSH to be in a certain range that is determined by our individual body, not some chart in a medical journal.

Let's assume my body has always had a TSH of 1.0, with minor fluxuations up and down through the month. If my TSH rises above 1.75, or falls below 0.25, I will develop symptoms of thyroid disease.

Using this example, if I am treated with medication and held at a TSH of 2.2 for months, I will feel sick. The TSH test will say I am fine, but I am sick.

Most people have a TSH set point (perfect for THEIR body) that is somewhere between 1.0 and 1.5. Some people are a little lower, some are a little higher. The doctor doesn't know what your set point was before you developed Grave's disease, so your perfect TSH level is a guess.

You have to find it by trial and error by adjusting your med dosage until your symptoms go away. This is further complicated by the fact that some symptoms do not go away until you are on the right med dosage for several months.

So, it takes a patient that is paying attention to their body, a doctor that understands what I posted above (many do not), and time. Each med change takes six weeks to evaluate after initializing, and each stage of tweeking your TSH can take months to bear fruit.

The first thing you need to do is get copies of your labwork and see what the resuts are. Maybe they are good and you just need a little more time for your body to heal. Maybe they are not so good, and you need a dosage adjustment.

Are you in England?
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Hi, thank you for this info, do you know what I need to do about my eyes? yes I am in England. I had a blood test last week and I am going to see my doctor to get the results on Wednesday. The doctors don't seem to have the time to go through all the results with you but I am going to find out where I am on the TSH test and take you comments with me.  The main reason I know things are not right is I feel very tearful all the time, and the black cloud comes over me more and more.
From what I was told I thought once mt thyroid had been removed everything would be ok in a couple of months, it has only been through going on the internet and going to see a yoga teacher who is very good at making you listen to your body that I have realised it could take up to 18 months for my body to recover.  
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213044_tn?1236531060
You are correct. It could take that long for your body to recover.

I am not trying to be critical, but I have noticed that many doctors in England are not very willing to share your test results with you. They tell you what they think the test shows, but they are not so happy about giving you a copy to take home.

Be assertive and request copies to keep at home. Then you can look at the lab limits and test results and discuss them with others on the internet. Knowledge is power.

Some doctors take umbrage with that, because they do not really want you telling them what to do.

Being treated in England is also a little different than here because often the doctors there are forced to follow guidelines and have less leeway in making treatment decisions that fall outside the realm of acceptable practices.

They sometimes have their hands tied as far as "bending the rules", even if they know it is the right thing to do.

Good luck at your next appointment, and try to get a copy to take home with you. If nothing else, ask questions and take notes.

If my assumptions are incorrect, please say so. It is just the impression I have gotten speaking with thyroid patients on other boards who live in England. I would hate to paint the wrong picture out of ignorance.
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Avatar_f_tn
Hi, you are right.  I have had my thyroid totally removed and I am still buying books to find out what has really happened. When I had the op I was in such an emotional state I would have done anything to make the emotional side of it all stop, and I did, I had the op.  I have graves and I don't really know much about that at all. They said that I had some lid lag and then moved on. I think - if I undertsand thing right that removing the thyroid does not stop the Graves and I am sure one of my eyes is sticking out more than before the op.  Anyway, I am going to sit there this time until I find out more. I know our doctors have targets to hit with how many people they see etc and yes all I have been told is that my tests are ok. The surgeon decided my does of levothyroxine, it's 150 micrograms a day, I'm 5ft 9ins and 176lbs, my GP said he thought it was high but the tests are ok.
I have started taking flax seed oil to try to help my eyes, I have read somewhere it helps. I am also looking after myself with lots of sleep, good food, no wine and no smoking. I do 30 mins yoga each day also. I have done all this as I want to feel better but I have not had any medical advice about what to do and what not to do. Time to be pushy I think!!  I will send you my results and you can see what you think, also if you know about graves and can tell me if I am right and the graves is still there? You see, over here you can't just go and see a doctor privately, your national health GP has to refer you so I am finding out what I can now from books etc. If there are any books you would recommend which help you after the op and feeling fighting fit again then please let me know. I have always been full of energy and fun, a little hyper active as a child and as a adult at times and then I would sleep for 8 hours. Now I sleep for 8 hours without the mad energy inbetween :-)
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213044_tn?1236531060
Grave's disease does not go away. It is treated, but there is no cure. It is an auto-immune diesease that causes you to produce anibodies against your own body. The thyroid, in the case of Grave's.

There is also Thyroid Eye Disease, or TED, which is brought on by the same antibodies, but for some reason is not considered part of Grave's Disease. A person with Grave's may not get TED, but anybody with TED has Grave's Disease as well. The distinction confuses me.

You can Google TED, or Thyroid Eye Disease and learn quite a bit. You can also go to the link below, and talk about Grave's and TED with others much more experienced than I. Many of the posters are British, so you would feel right at home.

http://thyroidhost.proboards30.com/index.cgi

The traffic there is a little slower, so you may not get instant replies, but the people in charge are very well versed on your problems, and there are some good topics to read covering nutrition and other aspects of healthy living.

I believe if you go to the Hyperthyroid forum, you will find threads on TED, and if you register you can ask and get all the information you need.
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Avatar_f_tn
Thank you for all this information. It really does help. I will let you know what my test results show up.
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Avatar_f_tn
Hi, could I just ask one more thing?  I keep seeing that people are taking synthroid, what is the difference between that levothyroxine?
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213044_tn?1236531060
Synthroid is a name brand drug derived from Levothyroxine Sodium.

Synthroid, Levothroid, Levoxyl, and Unithroid are all name brand products derived from this drug.

Generic Levothyroxine is made by many companies, and the fillers and acive ingrediant can vary quite a bit.

In the U.S., generics are allowed to have from 75% to 125% of the active drug and still be within drug manufacturing guidelines. So they are cheaper to take, but you never know from refill to refill if you are getting the same strength of drug.

For this reason, many doctors want you to take name brand drugs for consistancy, and many insurance companies want you to take generics to save money.

Here's a good read on it.

http://www.medicinenet.com/levothyroxine_sodium/article.htm

There are other classes of synthetic thyroid hormones, both name brand and generic as well.

My Endo insists I take Synthroid rather than a generic. If my levels fluxuate, she wants to know it is not because of inconsistancy in the replacement hormone.

Some people do not do well on Synthroid, so it is nice to have other choices available. Synthroid seems to work fine for me.
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Avatar_f_tn
Sorry you are having a hard time.

Can you appeal to go/go back to an endocrinologist?   I’m surprised you’re not getting continued care from one.  I was told after my total thyroidectomy this is the best kind of doctor to track this kind of care.

Also, it was recommended I go get a check up with an ophthalmologist.  This was to establish a baseline in case things with my eyes ever changed.  I finally did that after over a year and it helped, mostly to allay some of my fears about my eyes.  The dr knew a lot about how the thyroid and the eyes were connected.  If you can, I’d appeal to go to that kind of dr too, especially since you’re having symptoms.

Good luck.
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