[Naisly]

in reply to: weird throat sensation #1175341

Hi there,

Sounds like a goiter. TPO antibodies are indicators of thyroid inflammation.

When I was dx in May I had no swelling at all. Then in June I had an uptake and a week later I had a goiter. I was like you and noticed a huge difference with speech, swallowing and pressure when I first noticed any swelling. Then I went for an ultrasound in Sept. and it was 7+cm right side and 9+cm left. Typical thyroid is around 4cm each side. So yes I did notice quite a difference in a short time, but once I my levels started to change most of that feeling went away. Now, I can tell if my levels are going too far out just by pressure on my neck.

Hope that helped.

~Naisly

[Naisly]

in reply to: Does RAI effect parathyroids? #1170721

I’m not a doctor, only a Graves patient.

RAI destroys the funtion, not the structure. But it can cause Transient Hypoparathyroidism, or Hyperparathyroidism.

Also, cancer of the parathyroids is practically unknown outside exposure to radioiodine – yet it should be noted even though its only a couple cases out of a few thousand.

My internist mentioned that all adults who live on the 47th parallel and above, should have 1000UI daily and 2000UI for Graves Patients in the winter months. I live on the 49th parallel.

Like the last posts have said, talk to your doctor because too much Vitamin D can be toxic.

~Naisly

[Naisly]

in reply to: Joint/Muscle Pain – How common? #1175009

I did think this thread was about “Joint/Muscle Pain – How common?”

Quote:

but to make statements to people who are blindly trying to navigate their way through something where limited information is provided, who are in pain and are scared, and where there is no difinitive answer out there to why we are in pain, how long it will last and if it will ever stop and state that it’s not a big deal and the answers are obvious appears arrogant and feels very dismissive.

I thought I was answering these questions in my first reply. Then I thought (big mistake) I clarified a few things with my second reply.

I didn’t think we needed to go off topic for you to feel better, or I could have written a quite wordy sad response and went off topic a while ago. So, I am sorry if I was mistaken.

Quote:

Ok, so depending on your treatment, and where your at with this disease, something might not suite you so remember its always best to talk with your doctor.

In my first reply I said this – because not all advice will suite you. And it would have been ok to say so, but to be mean about it is just wrong when someone was trying to help and ANSWER your questions – Joint/Muscle Pain – How common?

Then to ignore my last post?…..

I do like to thank you for the sleepless night last night.

~Naisly

[Naisly]

in reply to: Joint/Muscle Pain – How common? #1175002

Quote:

Remember to always talk to your doctor, and educate yourself.

Your so right Kimberly, this is why I said this.

WWWI2

Quote:

Naisley – When you say “ have to say that I have been following this thread and sort of surprised that the obvious reasons for muscle aches and pains have not been mentioned. I will touch base on a few thoughts, and please keep in mind I’m not a doctor.” That makes me crazy.

This wasn’t directed at you. I Was hoping someone who was an older forum member could talk about their experience with this, which, surprised me because no one has spoken up. So I thought to share some thoughts to Help.

You have not shared your lab results, so I have no idea whether or not your hypo/hyper. I’m going on your symptoms. And why I brought up FT3 can cause muscle/joint pain if it is too high or too low. I’ve had – 2 GP’s, 1 endo, 1 internist, and all acknowledged it and said it was a symptom. And as your learning, I assume you have noticed not all doctors know enough about Graves, not even endo’s

I do not take CoQ10. This was only a suggestion to try help ease your suffering and again, trying to Help.

This is the exact reason I do not like to make posts.

MaryI
Thank you so sharing your experience.

[Naisly]

in reply to: Joint/Muscle Pain – How common? #1174998

WWW12

I have to say that I have been following this thread and sort of surprised that the obvious reasons for muscle aches and pains have not been mentioned. I will touch base on a few thoughts, and please keep in mind I’m not a doctor.

Ok, so depending on your treatment, and where your at with this disease, something might not suite you so remember its always best to talk with your doctor.

WWWI2 wrote:

I kept reading online that joint pain is very uncommon in Graves

This is not true. I had very bad pains when I was hyper – my levels were pretty bad:
TSH 0.06 (0.38-5.5)
T4 Free 58.2 (10.5-20.0)
T3 Free 21.7 (3.5-6.5)
I later found out this pain can be quite normal, also, high FT3 can cause this. I also learned that Propranolol (beta-blocker) can help lower FT3 as well as BP, anxiety, even headaches etc. It is known that they give this out for just that – migraines and anxiety.

It is also known that muscle aches are a symptom of being hypo. So I suggest you get your levels checked, even if you have to every 3weeks, which was suggested for me, actually now every 2weeks for me since my levels are changing so fast.

You must realize that it does take a while for your body to heal from all of this. It’s like having a broken leg (lets say) it doesn’t heal in a week, but can take 6months for one leg, imagine your whole body needs to heal.

One last thing, CoQ10 is really great for the Fibromyalgia type pains. Have a look at this web site Just explains what it is.

Remember to always talk to your doctor, and educate yourself.

~Naisly

[Naisly]

in reply to: How is your Vitamin D levels? #1175101

My internist recommended that I take 2000IU of vitamin D daily since I have graves. He also said that it was known fact (at least here in Canada) that anyone living on the 47th parallel and above take 1000IU daily even if they don’t have graves. (There is not enough sun). Talk to your doctor.

There are some foods that have vitD – tuna, mushrooms, eggs, alfalfa, fish oils.

~Naisly

[Naisly]

in reply to: New to the forum but not new to Grave’s #1175059

dhuston

Hi there. It sounds like your going through some hard times, and have gone through them. This place is a great place to vent and cry with others who understand and feel your pain, so welcome!

I do have a question – what are you doing for treatment atm? What did you do for treatment in the past?

Sounds like your hyper again…

~Naisy

[Naisly]

in reply to: Graves and Menopause? #1175031

vanillasky,

You said your TSI is 800, what are your lab normal ranges for TSI? I ask because all labs are different.

~Naisly

[Naisly]

in reply to: Husband’s definition of support… #1174906

I’m not going to lie to you – It is hard!

But it does get better.

I get the feeling your in ‘panic mode’ – “I can’t dance, I can’t get divorced, I can’t look after my son; what do I do, what do I do – Leap.”

ALL those feelings are just; they are who you are. And here comes Graves disease, stepping in and now taking over making everything even more extreme pushing aside the logical YOU and enhancing the emotional side. This is very normal. I also have the feeling your so much in a panic that your willing to do about anything to get this disease out so you can get on with your life, and to be honest I don’t blame you. In reality this isn’t going to happen. Educate before you leap.

To get your life back, you need to start with a plan – but in order for that to happen you will need to get control over your anxiety, and emotions, because quite frankly, Graves is in control at the moment.

So, I suggest you read EVERYTHING about Graves Disease, get on some ATD’s and a beta-blocker (these will help with anxiety and stress, as well as some symptoms, such as tremors, fast heart beat etc) BUT for the sake of your own health, talk to your doctor first!

Let me ask you this – How are you going to educate someone else on the disease if your emotionally a wreck and not educated as well? <--- This is the key. I’m sort of in the same boat, but I’m not going to get into that right now, but what I will say is that when I was first trying to get my partner to listen to me, because he was just like your husband. I sort of played dumb and would show him something on the computer and ask him if he knew what they meant ( I knew the answer), you see I gave him the power, and after a while of doing this I would move up to a full article – I noticed he was actually understanding most of it, then I made a big deal about how smart he was. Then I finally asked him if he could teach me. This is not a perfect formula by no means, but for most part it works. It’s actually something I have learned as a parent. And well (men close your eyes please!) we all know men are like children and usually have huge egos. You need to take control back, and once you do, you will feel very empowered, and once this happens, you will be able to make the right decisions for YOU. ~Naisly

[Naisly]

in reply to: New here with a dilemma #1174892

Khadijah wrote:

Naisly- no, I especially refuse to attempt remission with the medication. I don’t want to risk my liver or kidneys under any circumstance. Also, im pretty sure i have no chance of remission with my levels. I am leaning tward RAI but now i am concerned about my eyes. I have very bad eyesight to begin with.

Hi Khadijah,

I think the best thing can you do at this time is educate yourself. You don’t need to go into remission, but at least you can go euthyroid – which I believe is today’s practice before any RAI or surgery. Also, it is rare for someone to get a reaction from the medication. This is why your attending physician will monitor your blood work every 3-4 weeks to start (same for RAI/surgery). In the United States the medication has been in use for more than 60 years and I haven’t heard of kidney issues as Kimberly said.

For me personally, the risks of cancer from RAI (I-131) greatly out way the risks for liver or wbc issues because I know me and doctor are monitoring my blood work and will stop it all together, or change the dosage if we find it is causing any problems, where as I can’t do that if I get cancer – too high of a gamble for me.

Hope you feel better soon.

~Naisly

[Naisly]

in reply to: New here with a dilemma #1174888

Hi and welcome.

I am wondering why your endo never brought up the 3rd option – achieving remission with medication?

Seems in your case it would be a good place to start, specifically since you wouldn’t have to be out of commission and it would at least give you some time to educate yourself and hopefully your husband on the disease.

~Naisly

[Naisly]

in reply to: Labs are a no-no here but… #1174863

catstuart7 wrote:

Naisley your plan sounds awesome How did you find this amazing doctor?

So sorry I missed your post – But there really isn’t an easy answer. All I can say is, when I went into his office I had already planned ‘pretty’ much what I was looking for by educating myself beforehand. I learned a whole lot about TSI/TPO/TSH/Free’s, remission, and dosage. I began to understand how the medication was reacting with my own body and the effects on previous labs.

And to be honest, I went in to see him for only a heart monitor, but I knew my heart issues where directly caused by Graves, so it was obvious to me that this would come up.

And Shirley,

Thank you! I do hope your eyes have improved.

~Naisly

[Naisly]

in reply to: Labs are a no-no here but… #1174861

Hi Shirley,

Thanks for the reply.

My dr wants to to stop the beta-blockers cold turkey. I did question him about that since I heard/read its best to tapper down, he said I didn’t need to since my levels were so low and went off into a bunch of medical jargon.

You are correct when you say that TSI is not helpful with treatment (but helpful with remission – as explained below) that’s why we are treating this with 2week intervals then watching freeT4’s and as well as making sure freeT3’s and TSH are following suit. Once the freeT4’s are within ranges we will begin with maintenance dosing, watching my labs as well as symptoms.

Some of the readers out there might not know this part and this is where it gets a tad tricky. Euthyroid means normal thyroid function and does not mean Graves disease is in remission (The thyroid gland is the victim, not the cause). For Graves to be in remission, you must not have any (or very very little) TSI (thyroid stimulating immunoglobulin) which causes the production of the thyroid hormone. TSI is the direct cause of hyperthyroidism in Graves’ disease. TSI will continue to be elevated if there are still environmental triggers. This is why some research states its best to stay away from processed foods, cigarette smoke (and why cigarette smoke can increase likely hood for TED), etc and eat healthy. Stress is also included in this as we have read all the research lately about this.

So my suggestion to all the readers out there is get as much info as you can about TSI as I only condensed this last part. Its always best to keep asking questions, talk to your dr’s, and be your own advocate.

So now we know a little bit about TSI which by reading what I just wrote, is why it is important for remission.

Ok, so this is my take on it all. I have read remission can occur any where from 18% – 80% in patients and I have an idea why that is. I don’t think many patients have been given the proper knowledge about the disease and assume they take a pill every day, get to euthyroid (mistakenly thinking this is remission) then stop taking the medication assuming they are in remission, yet found themselves bounced right back to hyper. Nor do most people take into account the environmental triggers and continue to eat the same, smoke the same, keep the same stress levels and expect that little pill to do it’s magic all on it’s own.

After saying all this, this is why I said:

Naisly wrote:

Once the antibodies are normal (TSI) will be the time to start to ween off of the atd’s and head into remission and this can take any where from 1-2 years, if not longer.

So depending on how you live, your ‘environmental triggers’, Shirley is right in saying it can take years for your TSI levels to normalize this is why lifestyle changes are important for your immune system to heal, but if the case was your TSI was still high, many people do fine staying on a small maintenance dose for many many years. I know someone who has been doing so for 30+ years, and look at Kimberly here, she has been on it for 7 years?

So remember, just because your euthyroid, doesn’t mean your ready for remission. You must be both euthyroid as well as no TSI.

Couple facts I’ll throw in – You will always have Graves disease even if you remove your thyroid, by either surgery or RAI. TSI will raise dramatically after RAI and why the chances to get TED is higher, and slightly after surgery. Graves is an autoimmune disease and with any autoimmune disease your chances to have an other one is 2x as likely.

Anyways I’m sorry, I’ve probably confused you all even more, but the best advise I can give you all is to educate yourself!

~Naisly

[Naisly]

in reply to: Labs are a no-no here but… #1174858

catstuart7 wrote:

How about this study from Amsterdam? Suppression of Serum TSH [jcem.endojournals.org]

Thank you catstuart7. This study I found useful and quoted bits to bring with me. Which to be honest, the internal medical dr I saw yesterday didn’t really need it. He was on-top of all the latest.

I walked out of his office feeling a lot better. He’s also willing to follow my care and wants me to stop the beta-blockers completely (120mg daily) which is likely the cause of my heart issues. He believes I have Hashimoto’s as well as Graves, but it doesn’t matter since either way I need to get my levels stabilized.

Since I am responding so well to atd’s, he wants me to start 10mg of Methethimazole (down from 15mg) immediately for 2weeks, get labs done, then lower and repeat. Best part is I can dose according to my labs (which I get on-line within 12hrs). He just wants to work on the freeT4’s as the rest will follow suite, great news there. Most people need to get labs every 3-4weeks for any significant change to show. So the route we are taking is:

• To get labs stabilized as stated above.
• Once this occurs we will then work with my symptoms, since the atd’s are working faster than healing.
• Since healing takes longer, I will get labs every 4weeks and adjust accordingly.
• At that point dosing should be in small increments of about .5mg – 2.5mg and this is only to bring my levels to where my body feels the best.
• When that is achieved – will be the day I mark on my calendar and aim for remission. And check TSI/TPO with my other labs every 3months or so.
• Once the antibodies are normal (TSI) will be the time to start to ween off of the atd’s and head into remission and this can take any where from 1-2 years, if not longer.

As long as I try and eat right, stay away from processed foods, keep stress at bay, learn to say ‘no’ continue to be an advocate for my health, I believe I can achieve remission.

~Naisly

[Naisly]

in reply to: Labs are a no-no here but… #1174856

Thank you again for the reply.

I think Monday I will go to this appointment well armed with all my labs and a wealth of info.

However I do need so Canadian guidelines for treatment with medication. I would rather bring Canadian because from the few dr’s I’ve talked with, they don’t like US medicare since as they put it – Their mandate seems to be based on the financial aspect rather than healthcare, meaning the insurance companies run healthcare – To put it mildly.

For example its very hard for me to bring in US guidelines (I’ve tried) stating not to dose according to TSH levels, rather dose on free T’s.

So if anyone has Canadian literature they would like to share, please do. Perhaps I’ll even try stuff from the UK. If not, I’m afraid I’ll be hypo forever

Thanks again,

~Naisly

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