[James]

in reply to: Anyone else with muscle pain #1068004

Nancy brings up a great point that we can’t interpret labs, but did you mention to your Dr. that you were feeling great and then didn’t feel so great when your levels were bordering on Hypo? I experienced cramping and such when I was bordering on hyper, but my levels never went as low as yours so I can’t comment on the other end of the spectrum, although it does seem suspect in your particular case and is well worth pursuing with your Dr. Also, consider and explore with your Dr. other health conditions that are unrelated to Graves’ that may have an impact on the cramping/soreness you are experiencing. As an example, this past Spring I was placed on full spectrum antibiotics for a condition totally unrelated to Graves. The fungal infection that ensued as a result of antibiotic use brought on similar conditions to what you are experiencing. I am physically fit and continually active, but felt extreme cramping and muscle pain that would not let up, this was very unusual for me and it wasn’t Graves related. Our bodies are complicated machines. Just make sure you rule every possible condition out with your Dr.

[James]

in reply to: looking for help with PTU treatment #1068115

I’ve always had FT3 FT4 and TSH tested while on ATD’s and I insisted on it for the very reasons that Kimberly pointed out. It wasn’t until I was solidly in remission for a period of time before I started testing TSH only. At least now, I know where my baseline TSH should be; any trend downward in TSH would require FT3 & FT4 testing again, at least I would insist on that. My euthyroid TSH levels always have been on the lower side of normal. I most certainly wouldn’t want to be put on ATD’s unnecessarily when my T3/T4’s were actually at my personal optimum. It is important to find that “personal optimum” and not just be “within the normal range”. Experience and studying your own lab reports over time can help you make that determination.

James

[James]

in reply to: Treatment Suggestion: Rad. Iodine vs. Anti Thyroid Drugs #1068221

Trey,

Your specs are quite similar to mine. 5’10”, range in weight almost identical I top out close to 180 and bottom out as low as 165 depending on the exercise regimen I am engaging in. With more weight bearing exercise, I end up at the higher end of the scale. I am presently 174 and feel healthy and fit. Upon diagnosis my thyroid was grossly overactive (according to the Dr.). I resolved from the outset that ATD’s were the way I was going to go even though my endo was leaning toward RAI, he had no medically compelling reason to preclude me from going on them. I was resolved to do it and determined to achieve remission against all odds. I was willing to accept that there was the possibility of side effects, but determined to wean off to as low of a maintenance dose as possible. That was my mindset and I was sticking to it. For me it was never a problem, I bounced back quickly, encountered a couple of set-backs over the years along the way, but recovered quickly. Good news for me was that any setback had a quicker recovery time than the previous set back. In part due to the fact that I was much better in tune with what was going on in my body and became much more proactive in my approach. It bothers me anytime a patient isn’t properly briefed on all the treatment options. I’m glad you found this site.

Just as an aside, I would suggest that you take a close look at any supplements (if any) that you may have started prior to the onset of GD. Although all of us with GD already have a genetic predisposition to the disease, there are also some supplements that may have the potential to trigger the disease. I was taking a product prior to my diagnosis that, although I can’t prove it triggered the disease, I was always suspect of the product and discontinued it’s use “just in case”. Since then I have become very wary of any supplements and try to stick to whole foods only with a proper vitamin regimen.

Keep in mind everyone’s Graves’ experience is different. If I had significant problems with the ATD’s, I of course would have looked for another medically acceptable option. There simply wasn’t the need for that in my individual case.

Take care,

James

[James]

in reply to: life insurance refusal #1069199

Like elf, I’m a Canadian resident as well and have had independent Term Life insurance for a good number of years (well over 10 years). At the time, I remember going through a battery of blood tests and some medical testing (BP etc), I had full blown Graves’ Disease at the time the Insurance policy was underwritten and the Insurance company knew about that. When I say “full blown” I mean, it was controlled with antithyroid medication at the time, but it certainly wasn’t in remission. I don’t know if it makes a difference as to when the plan was underwritten (in my case well over 10 years ago), or if it has something to do with which country you reside in. One would think that GD is very controllable and although potentially life threatening, usually most everyone goes on to live relatively normal lives after treatment. Perhaps they are concerned about the increased likelihood of one developing a more serious form of autoimmune disease, but that rationale seems like a stretch to me. I’m going to call my Insurance agent and make some inquiries about this. I’m just curious as to if I would be still be insurable today.

James

[James]

in reply to: Gardasil Vaccine and Graves Disease #1069571

Hi all,

There is no doubt that as people with autoimmune disorders we need to become educated and aware of any risks associated with inoculations/vaccinations. That extends to our offspring who may in fact also be at risk for acquiring similar autoimmune disorders. My Dr. recently asked me if my Tetanus inoculation was up to date. When I questioned him about the risks, he admitted that I could potentially be at higher risk than the average person given my history of autoimmune disorder. In the end I declined the vaccination knowing that if I was subjected to Tetanus, that I could still receive the vaccine within a short period of time after the fact if I needed to. Vaccines can be a godsend, but in my opinion, we have to carefully weigh the pros and cons and not subject ourselves to vaccines, “just because”.

I think it is important that any autoimmune reaction to a vaccine isn’t dismissed as mere coincidence, but reported to the Vaccine Adverse Event Reporting System (VAERS) as mentioned by Kristin in an earlier posting in this thread.

Best to all of you,

James

[James]

in reply to: At a crossroad, want your opinion, please. #1068622

Ciona,

The biggest benefit working for your right now is that you have experience with this disease. The newly diagnosed don’t have the same advantage in that they are seeking answers without as much knowledge and certainly without the benefit of experience. I don’t believe that any one on this message board or any Dr. for that matter can tell you what should or shouldn’t do. Kim is correct when she says you have to make the choice that you are 100% comfortable with.

I’m personally not convinced that there are any studies proving that remission rates with Block and Replace are any more or less likely as compared with ATD’s alone, but I could be wrong and would welcome correction. To me (and again this is just my opinion), it is like pressing the gas and the brake pedal on at the same time. When my levels were coming down from hyper, I just opted for much smaller doses of ATD, but again; if B & R works for someone and they are under a Dr’s. supervision, then they should have the opportunity to try that method.

After reading probably thousands of posts over the years I realize more and more that this is not a one size fits all disease. Some people are not as sensitive to minor fluctuations of hormone levels whereas some people are. Some people go hypo VERY gradually and don’t even realize they are extremely hypo. Either way, we all have to be monitored for life to be sure we remain in optimum health. I do believe that the good lifestyle choices you have engaged in, is going to assist you with your overall health in general. These are all things you are definitely doing right.

Take care!

James

[James]

in reply to: endoscopic or video assisted thyroidectomy? #1072433

Hello everyone,

The procedure that was tested in Canada with further study in China called, “Thyroid Arterial Embolization” is not a TT. The thyroid in this procedure is kept intact, it is the arteries feeding the thyroid (superior and inferior) and most of their branches that are blocked through this fairly non-invasive procedure. Ideally the procedure would reduce the size of the thyroid tissue and help bring about euthyroidism (normal thyroid levels) . This was a big medical news story a number of years ago in my hometown (Calgary, Canada) where the procedure was being tested at the time. As Nancy mentioned, there weren’t many patients in Canada that had the procedure done. I have communicated with Dr. Wong in the past and received some interesting information from him.

Just to be clear, this is not a standard or proven therapy as of yet as promising as it sounds. With that being said, it is important for us to encourage research and become as informed as possible to all of treatments that are or could become available to us in the future. As Nancy mentioned, we will probably hear a lot more about this in the years to come. Stay tuned.

Regards,

James

[James]

in reply to: Mother with GD – HELP! #1068862

SofiaFreitas wrote: . . . My mother is 60 and has GD for 3 years. A specialist doctor has always followed her (an endocrinologist) and her levels are balanced. She isn’t currently taking any medication because the thyroid is controlled. . .

Hi Sofia,

Sorry to hear about the struggles you are experiencing right now. I would have to agree with many of the responses so far. I was wondering if there were some other things at play though. If you say that your mother’s levels are balanced and that she isn’t taking any medication because the thyroid is “controlled”, one would that that this unusual behaviour should have subsided somewhat. When I was Hyperthyroid I would do or say things totally out of character (effects men and women the same way), once the thyroid is under control, typically the persons disposition starts returning to normal as well. It is important for your mother and her Dr. to determine if in fact it truly is the GD that is effecting her emotionally; if not, then further investigation by a qualified physician/specialist would be required to determine what in fact is at play.

There is no question that GD can have a profound effect on the way we behave, I just think that you have to encourage your mother and her Dr. to properly assess that with certainty.

Take care,

James

[James]

in reply to: How much Tapazole is too much? Results tomorrow… #1068947

Hi Mongo,

Different labs often use different reference ranges so it is difficult to determine where you are at based on your posted results. Your Dr. should be able to assist you with that I suppose.

I can tell you that my TSH levels were undetectable when diagnosed and it is still possible to achieve remission. For now though, you need to continue to work with your Dr. to achieve a euthyroid state first (normal thyroid levels), and in doing so hopefully dropping down to a much more manageable level of ATD in order to maintain those normal levels. You are very patient, continue to take one day at a time as you have been and keep being positive. I’m am curious to know if you are experiencing any side effects from the ATD?

Take good care of yourself,

James

[James]

in reply to: How much Tapazole is too much? Results tomorrow… #1068945

Mongo,

Let us know how your recent labs turn out, hopefully you will see some improvement. 60mg of Methimazole is definitely a fairly hefty dose of ATD. Your comment about “wanting to keep your poor thyroid”, doesn’t make you a wimp as you suggested. It means you have resolve and determination. Just trying to give you a positive spin. Keep us posted on your progress. . . . . hope you feel better soon.

Best regards,

James

[James]

in reply to: Newly diagnosed & have questions please #1069157

Hi Gayle,

If your Dr. is saying you are doing great, then that is to be celebrated. If you are not experiencing “major symptoms”, that is also a very positive sign. I have learned over the years the GD can affect individual people in some very different ways, it’s not one size fits all, although there are definitely some common symptoms. Press your Dr. to tell you more specifically why he is against ATD in you particular case. If ATD’s are the option you want to try first it is important that you have your Dr. onside with this decision. If there is a medically compelling reason that you can’t be on ATD’s, your Dr. needs to tell you why. Make sure you get as much information from your Dr. as possible . . that is not too much to expect, it is what you deserve as a patient.

Although it is impossible to prove with certainty that lifestyle changes will hasten remission; it is known that smoking can exacerbate or make the GD symptoms worse. Quitting smoking definitely would be a good start. I made certainly lifestyle changes myself and it was only to my benefit of ALL health fronts. Anything you can do to improve your diet and lifestyle should be employed regardless.

Try to not to worry about, “this person who experienced that” or, “that person who experienced this”. You say you feel fine right now . . . that’s GREAT. You have to take this process one day at a time and often your experiences with the disease will help give you direction as to what your ultimate treatment plan will entail. The important thing right now is that you ARE being treated and that you are under a Dr.’s supervision.

Keep us posted on your progress!

James

[James]

in reply to: Donating plasma? #1069291

Thanks for sharing this, it is certainly interesting.

Elevated TPO antibodies are apparently much more common in patients with Hashimoto’s disease and can be evidence of Thyroid tissue destruction. A smaller percentage of Graves’ patients may have elevated TPO antibodies as well, but it isn’t quite as common apparently.

My father has Hashimoto’s and his TPO antibodies are off the map high. I’ve had my TPO antibodies tested recently and I am well within the normal range, although I don’t recall off hand what that number was. I wish I could remember what the reference ranges were . . . my dad was a 200!

James

[James]

in reply to: Hi, everyone! I’m the new facilitator. #1069061

Hello Ellen,

Thanks for the very thorough and informative introduction. Without a doubt, your many years of experience with the Thyroid Foundation of America will be an asset to this board. It is great to have you on-stream.

James

[James]

in reply to: will the tremors EVER go away for good? #1069072

Emily,

It’s encouraging to see that you have bee able to achieve normal thyroid levels on a maintenance dose of Methimazole.

As far as the continued hand tremors are concerned, try to rule out other things unrelated to GD as well. Look at diet, how much caffeing intake, certain medications that you may be taking. Anxiety alone may be something that manifests itself in this way. It is easy for the newly diagnosed to worry or fret for fear of returning to the way they were before. Many of us can certainly relate to that. A sudden adrenaline rush (like Sue experienced) can certainly do that to us as well.

It is great that you are being tested for TSH as well as FT3 & FT4. Keep copies of all of your test results and note on each result how you felt at those specific thyroid levels. Include such things as heart-rate, BP & manifestations such as tremors. That way with each blood test you will determine an optimum thyroid level for you. The optimum level can vary from person to person. In the end, be encouraged that you are well on your way to good health.

Regards,

James

[James]

in reply to: 2 weeks post RAI my update #1069184

Runlacie,

I think that you would be encouraged to read the Gail Devers story (Olympic Gold medalist sprinter). Just google “Gail Devers Story Graves’ Disease”. She went for 2.5 years without being properly diagnosed which really set her back, but in the end recovered to win Gold.

James

[Author]

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