[Naisly]

in reply to: Anybody have this? #1177704

Quote:

For example, one of our volunteers who was in the middle of multiple TED surgeries shared that she had a TSI in the mid-400s. Hers was almost identical to mine at the time…and my eye issues have been more mild so far (although definitely bothersome).

That is because you have a thyroid. TSI will attack other tissues once the thyroid is gone. Most people on ADT’s do not have many eye issues and if they do, they are usually not severe, at least not severe enough for eye surgery. And as your levels normalize, so will your eye symptoms while your on ATD’s

LKBallenger Many Graves patients are Hypo before they end up Hyper and this can go on for years.

[Naisly]

in reply to: Well, here goes! #1173598

If you haven’t read what I wrote here have a look:
http://gdatf.org/forum/topic/43090/

It might help.

[Naisly]

in reply to: Few things to help you feel better. #1175504

I am glad I can help!
I hope your job works out for you.

I did add some doctor tips as well.

[Naisly]

in reply to: Well, here goes! #1173595

Just to add – Symptoms are related to FT3&4 not TSH. Mainly FT3 since FT4 is a storage hormone. If it was TSH then people with .01 TSH and normal FT’s would be extremely hyper feeling and probably end up in a thyroid storm, and I with a TSH of 78 would have been in a coma.

FT3 is the active hormone your body uses in metabolism. And why people with no thyroid will have many complaints relating to hypo symptoms, and why there is currently controversy regarding adding FT3 along with FT4 to your supplements.

This is again why it is important for your doctor to test for FT3/FT4 and not rely on TSH only. The idea is to watch your levels along with your symptoms and dose medication accordingly.

[Naisly]

in reply to: Is the Uptake Test Necessary? #1177131

Quote:

but postpartum manifests itself identically to Graves- including the antibodies.

Up to 25% of women have TSH receptor antibodies
As per http://jcem.endojournals.org/content/87/9/4042.long

Quote:

The differential between the two is often straightforward but could be challenging, especially because in some studies up to 25% of women with postpartum thyroiditis are positive for TSH receptor antibody (Table 2⇓). When present, either exophthalmos or a thyroid bruit confirms Graves’ disease.

Thyroid bruit is a ultrasound.

Here is another:
http://www.mayoclinic.com/health/postpartum-thyroiditis/AN00153

Hope this helped answer your question.

[Naisly]

in reply to: Hair loss and doctor’s response #1177672

As per aace hair loss is a hypo symptom — Hyper is fine hair, Hypo is coarse or loss of hair.

There is quite a bit of literature regarding this.

[Naisly]

in reply to: High TSI (700+) post thyroidectomy?? #1177477

Wow Kimberly, $300 is quite a lot, when did you have it done? Because I found a lab that does them for $95 LabTestPortal(2500 US locations)

Here is Canada, we don’t pay for our labs, they come with our medicare.

jaqeinquotation
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2265.2000.00959.x/abstract
http://www.ncbi.nlm.nih.gov/pubmed/22435785

[Naisly]

in reply to: Is the Uptake Test Necessary? #1177129

Ok, I left this for a bit, but now that I am feeling better, I’ll add to what I said.

adenure

Quote:

Where did you hear that the uptake isn’t accurate for Graves diagnosis?

From the Mayoclinic They are talking about TSI/TRAb
“Either assay is more accurate (and cheaper) than a radioactive iodine uptake and scan, which are traditionally used to differentiate Graves’ disease from other causes of thyrotoxicosis,” says Dr. Grebe. “TRAB assays and TSI bioassays are also particularly useful in distinguishing hyperemesis gravidarum-related thyrotoxicosis from a first-trimester presentation of Graves’ disease.”

Also, Americans ingest a lot of iodine they get about 450 daily, recommended is 150. This has been known to interfere with the RAIU and WHY it is such a high number now for normal (30% is about normal) — Check out Heart and Stroke Foundation. So this will mess up with the results this is why the false/positive results. It can no longer show clear abnormalities.

The RAIU scan will only show spots with differences in density. That’s is, nothing more, which you can get the same result from a ultrasound.
And the only way to find out if there is cancer is by a FNA
National Research Council of Canada

Btw, it is I-125 they use which is still a radioactive isotope.

Quote:

As far as treatment, in order to do the scan, a person has to be off of methimazole or PTU for 10 days before the scan. So, you wouldn’t be on any ATD’s at that point.

Point I was making was, well just what I said — Most people who are FIRST diagnosed are very very (repeat very) hyper. Their levels are not near in a good place, so again, adding iodine is like adding fuel to the fire.

Hope this cleared some things up.

[Naisly]

in reply to: High TSI (700+) post thyroidectomy?? #1177475

Hi there,

High TSI is to be expected after a TT or RAI. I think this is important to know, for the reason TSI can cause TED to flair or skin issues. And the best remedy for this is to stay away from stimulants that would effect your immune system.

And for jaqeinquotation I think it is fair to say, since you are having issues with TED, I would ask, for the purpose of ‘knowing is half the battle’ because once you see those numbers on a physical piece of paper, it might help you to stay away from such stimulants – You can read here what I wrote on the subject.

As far as cost, it is about $70-$78 so I guess it is just in prospective on whether it is expensive or not. (I looked up on-line at some of your labs there in the US)

[Naisly]

in reply to: TT = anxiety reduction? #1177639

Blah! Ok I forgot to add the most important thing — (By the way this is just a ‘graves thing’ the forgetting stuff. You will hear me saying that through out the day, “Oh its just a graves thing” Doesn’t work so well when I bounce cheques because I ‘forgot’ to put money in the account – in that case I get my partner to phone the bank begging for mercy Lol.)<--Positive Alrighty, Back to the important part – The point I was trying to reach (finally at 2:30am I remember, better late than never )<--Positive I had to learn a lot about anxiety and depression and how to cope. While we are hyper, our brains are working a million miles an hour, we are in fact hypersensitive to our surroundings. This is the same as a autistic mind. I had to remove things in my sons surroundings for example, if I was talking to them I would turn off the TV or radio. Autistic people will be over stimulated, this is what causes them to go into a fit. I wrote this in another post: I do have a hypersensitive personality to begin with but I can imagine for those who don’t, how this must feel to them. The doom and gloom for me is because we can’t focus, we hurt, we ache, we have no energy, we worry, we can’t even do meticulous small tasks like write our name, we can’t, we can’t and this in it self would drive anyone crazy. Because of that hypersensitive feeling – all those tasks that lay a head with a feeling of no control over them. This was usually my breaking point, that point of no return – Graves Rage. It’s very much like being tortured every minute of every day – Enough to break a persons will. I think, that if family members can help by removing some of the triggers – Like negativity and remove a lot of the daily stimulation that goes on in every house hold would help. By stimulation I mean things like, the dog needs to be let out, the phone is ringing, visitors are coming and going, the TV is on, the dishes need to be done, the son is jumping on the couch again etc etc. Most people can deal just fine with this going on around them and think nothing of it – for us, we can’t deal with most of these tasks at times because of the physical aspect, but what puts me over the edge is I’m thinking and seeing all of this in one thought. Think of the movie the Exorcist and how her head was spinning – That’s how I feel. I would watch if your being overly negative because that might be near your breaking point. And see how I put the words <--Positive up top? This is what we must do, turn all negatives into positives, and it is something I must do everyday with my sons. All right, now that I got that off my chest, off to bed!

[Naisly]

in reply to: Few things to help you feel better. #1175501

I thought I would bump this up again since I have added a few more tips to help you all out.

[Naisly]

in reply to: TT = anxiety reduction? #1177638

Here is a little story about my experience.

I have 3 kids, the oldest being 23. Since he was in kindergarten doctors and teachers insisted he had ADHD. I fought back and said no – there is something else wrong. But they all insisted that he take his medication before he was allowed back in school. So I fought, and read, and studied and finally by the time he was 14 I saw some light — It looked like he had Asperger’s. But again, no one would listen and put my family through a great amount of inspection. By this time I was also fighting for my 8 year son, who also showed many of his brothers symptoms.

Now, when my 8 year son was born, he was premature by 5weeks. And every time I went into the doctor with concerns, they would immediately blame it on the fact he was premature. ie: Not talking, no crying, I even swore he had hearing problems, because he just would not respond. Yes ok, it is every parents dream to have a newborn sleep throughout the night and never fuss. I even had a doctor ask me why I was complaining. But by this time, he was my 3rd child, call it mothers intuition — but something was wrong.

Lets skip to more recently. For the past 2/3 years I have been working with social services, doctors, physiatrists, and hospitals among others to find out what was wrong with my youngest son who was then 14. My son was now suicidal, and everyone said he was ‘depressed’ He started to self medicated by smoking a lot of pot. The doctors put him on a anti depressant, he could not function at school, they did everything to treat him for sever depression. Even though I kept fighting and trying to explain to them something else was wrong.

They sent him to a hospital for depressed kids for 3 months. They seemed to do everything BUT look for the answers. Now, I hate pills, I don’t believe in them (to a degree) and I certainly did not believe they were good for my son to take, after all I didn’t believe depression to be the cause. My son did not like them either, and said they didn’t help — so we both agreed he didn’t have to take them. Of course the doctors were not impressed but so what, my son and I needed the TRUTH, not a cover up.

Finally, after years of fighting we find what we are looking for — This past October he was tested for ASD and diagnosed, he was 17 by this time. Apparently this clinic he was tested in is very hard to get into (and the only one in this province). Meaning, very few kids get in, because they need to make sure 100% that these kids are not suffering from — depression, anxiety, abuse etc. and the few that do get in, only a couple kids per year are actually diagnosed with ASD. Reason being, there is no actual blood test for ASD and for those who are unfamiliar, it means Autism Spectrum Disorder.

My older son who is now 23, recently I took back to a physiatrist, and he diagnosed him as having Asperger’s. I did shorten this quite a bit, but my point is you need to FIGHT, never let go. I have learned to advocate for my children as well as for myself. After almost 20 years I have learned a lot about how the brain works, reading, researching, and asking questions. I had to, no one else was willing.

For me, I do have OCD and a major phobia with ingesting anything. But I also have a ‘gift’ I can see patterns very clearly, and no not quilt patterns Lol. For example (and this is hard to explain) but, I will try – I can read, lets say 10 research papers on GD, and patterns will start to emerge. Problem is, I can see it clearly but have a difficult time explaining it and this is somewhat GD and OCD related for me.

Ok, so the moral of the story is – We are all born with our chemical balances in place. There are things in our life that can alter this. Stress is a big one (there was a study done on this and it showed that countries which had trauma like war etc, had a large influx of GD cases) With GD the hormones are part of this balance and some people are misdiagnosed for years, 20+ years in some. But you see what I have learned with my sons is that medication for anxiety/depression usually only covers up the underlying issues – They don’t actually fix the imbalances. It could be anything such as low vitamin D, low iron, adrenal glans, anyone of these low can make you feel tired, depressed, anxiety, headaches etc. Having these checked is important for graves patients, because these are known to be effected from this disease.

And this is why it can be tricky for anyone with ANY type of thyroid problem, because as I said we are born with set numbers and to find these numbers is like looking for a needle in a hay stack. This is why it is important for us to be educated and advocate for our health, because only we know our bodies, we know when something isn’t just right.

So you see, I’m not only advocating for myself, but for my 2 sons as well.

[Naisly]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177529

This is to add to what AzGravesGuy had said on an other post http://gdatf.org/forum/topic/43359/

Few things I have learned about doctors. One of the first things they learn in med school is ‘Occam’s razor’ and this is imbedded in their minds throughout schooling. So for them, state the obvious first.

Doctors have little training on medications, they heavily rely on that big book they slam down on their desk. Here’s the thing, lets just say the doctor went through med school 20 years ago, he/she will somewhat retain the knowledge that was taught then. We know things change, medications change etc. Problem being is that doctors are very busy people. It is not humanly possible for them to keep up so they mostly rely on what was taught 20years before. (there is actually quite a bit of literature regarding this)

An example of this is – It used to be that 30mg MMI once a day was standard starting dose for treatment of graves, recently this has changed to 20mg. They found that 30mg was too high for most as a lot of people had reactions ie: hives and it is harder for the liver to metabolize causing liver enzymes to go up (smaller doses are proven to be a lot safer for the liver) But you see doctors won’t know this unless they keep up, and graves is fairly rare, there are other diseases that have a higher priority. Most doctors will take you off the meds completely, not realizing that the high dose was the cause (in most cases).

This goes for dosing regarding TSH values only.

Doctors can not possibly know every disease there is (there are over 20,000 diseases) unless they are personally connected to it. The human brain can only retain a certain amount of information, unless they are a rare individual.

Tips:

• Endos: Walk into their waiting room, look around and see if they have literature/pamphlets etc on Graves Disease, if they don’t walk the other way.
• Your Pharmacist can be your best friend.
• ENT’s are a great choice for thyroid disorders in place of endos.
• Internists are second.
• And above all — You are hiring them to do a job – Is it fair they get paid to make you NOT happy?

[Naisly]

in reply to: meds, nightmares and feeling blah #1177646

It takes time for your body to recover. 3weeks is not enough time. It does take a bit of time for the stored hormone to leave.

Yes, the happy will return and the nightmares will go away once your levels are stable. I will note that when I am hypo, I too feel this way – My point is, perhaps it is time to have your levels checked, you may be heading into hypo.

Also, I think Kimberly will chime in here, but from what I have read, the robotic surgery isn’t that good since there is a higher chance your vocal cards and parathyroids can be damaged.

[Naisly]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177519

I cant agree with you more mslux. I have seen it time again how many people suffer after treatment. It is a WORLD epidemic and it seems many new groups are forming because of such. Whether it be any thyroid disorders, there is a major problem with lack of support from the people who are supposed to be looking out for us – doctors, politicians, or associations. I can only hope with the large influx of actors speaking out and joining organizations that our voice will be heard.

But in the mean time it is a scary thing. Take Anna Nicole Smith, her autopsy revealed she had a thyroid disorder which she nor anyone else knew about. I ran across some numbers a while ago on suicides and how many of them had thyroid issues, the number was very high.

People must remember before Graves Disease was first discovered and the story around that – The biggest symptom was cognitive deficits, which led to a lot of these women ending up in insane asylums.

I personally believe (through my research) that a lot of damage can occur when not properly treated in a timely fashion (IE: Finding a doctor, Waiting for appointments, proper dosing of medication, knowledgeable doctor, diet and lifestyle changes etc) since the thyroid hormones turn on every cell. An example of this is, if you were not to take your thyroid supplement for 2weeks (give or take) you will die because every cell shuts down.

Anyways, there is a lot more to this than what meets the eye that is for sure!

[Author]

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