[Harpy]

in reply to: methimazole makes me feel worse #1064681

Hey Jules
Hope you fare well on PTU
GD is a complex condition and lies deep within and behaves in unpredictable ways sometimes, the symptoms we see/feel are in the second and third level, the symptoms like thyroid hormone levels need to be treated to prevent them causing other problems, but even when they are corrected, the GD still needs to be dealt with and it seems that time and taking good care of your body, eating healthy, minimising stress will aid this process.
As for what you should do,
That’s like the meaning of life, only you can make that decision.
Of the three options currently available, ATD’s, RAI & Surgery, each have their own pro’s & con’s and hopefully as I said above you will respond well to PTU to allow your body & mind time to settle so you can put in some hard yards on researching your options such that you are in a clear frame of mind when making your decisions. It is extremely hard to make an informed decision in the early days of GD because of the way it makes you feel, you get a sense of desperation and fear, when your levels settle down your mind will be much clearer.
None of the options will fix it right now, so do your research, make informed decisions and be responsible for those decisions this will allow you to have a positive outlook with no regrets and be fully commited to your healing path.

[Harpy]

in reply to: Jitters while Hypo? #1064195

GD is a complex condition and has multiple symptom levels, even though you have had RAI, though this has eliminated or reduced the Hormone levels issue, there are still underlying factors of GD active, as time goes on your body will heal and the symptoms will gradually subside. The other thing with GD is the way it magnifies things so any sudden changes will be multiplied, this includes diet, stress, medication etc. so slow steady changes, you will still be sensitive for a while yet. With your replacement dose I have heard that it needs at least 1 week to start taking effect after you adjust it, there have been people who have got locked into the roller coaster ups & downs because they were trying to adjust too often.
The rule I have heard is 4 weeks between adjustments.
Try to apply some stress management and relaxation techniques as well, these can help dramatically to the way you feel.
You will get there.

[Harpy]

in reply to: Hyper again-What should I do? #1064353

Kmskelly
Just curious about your history?
You say 8 years remission after PTU treatment.
How long were you on PTU?
Did you make any changes in lifestyle or diet?
Did you have regular thyroid check up’s, Hormones & Antibody testing?
Did you pick up Hyper symptoms early this time?
Can you identify a possible trigger this time around?
etc, etc,
PM me if want.
I’m looking at a variety of causal effects re GD, and using a variety of sources to try put together some info and get a better understanding of how GD treatment could be improved as I believe it is not given the due consideration it should be by the medical profession, when you consider how debilitating it is, not to mention other related thyroid conditions.

[Harpy]

in reply to: What if RAI??!! #1064227

Hey Bobbi
As you inferred and I agree, when you get GD it is a lifelong relationship, not that you will be fighting GD forever, but that you will always be aware of it, whether it be the case of using replacement hormones or if you are in remission post ATD’s, either way you will always be aware and on the lookout for Hypo or Hyper symptoms and get more in touch with your body and it’s idiosyncracies.
As for the antibodies, I think the behaviour is that as treatment progresses, the AB levels drop and in many if not all cases the Hypo is caused when the AB’s leave the core of the thyroid nodes, and AB stimulated hormone production drops, then the AB’s attach to the peripheral cells and become blocking antibodies, preventing the release of hormones. In some ATD treatment protocols this is the time when replacement hormone is used in addition to the ATD medication, this is done to maintain hormone levels and also maintain ATD dose as it is believed the ATD medication also has an immunosuppresive role in reducing AB levels, this is continued until AB levels are normal. If the treatment is stopped before AB levels are normal, then the AB’s proliferate again, re enter the thyroid and cause the Hyper state to recur. This is believed to be the effect that results in the short term 3-12 month remissions. It is unfortunate that many Endo’s disregard AB levels in GD as it seems obvious that they play a key role and are an indicator of the GD position in a patient.
Not to say that the thyroid is not damaged by AB’s, but it is capable of regrowth and often does as has been seen with both RAI and even surgery where a little bit of thyroid tissue is missed and it regenerates, not to a full thyroid, but enough to produce a noticible effect.

[Harpy]

in reply to: Recently diagnosed and concerned about weight #1064600

Laura
Just did a quick google re your situation.
Firstly as mentioned iodine shouldn’t be too much of an issue, if you you have had RAI and your thyroid is mostly non functional, I assume you are on synthyroid or equivalent going too low on iodine may reduce effective conversion of T4 to T3, so try use non iodised salt and processed foods that have extra iodine, because, as Ellen said, your diet most likely has plenty of iodine already there.
Getting off the Toxins like sweets, alcohol and coffee is a good move any toxin load you remove will make it easier for you to heal, and improving your diet will help again.
I don’t know how strict you are with your vegitarian diet, just a couple of points, variety is the key, protein is essential, but the volume is probably less than you imagine, it is access to a wide variety of proteins that is the key.
There is indications that there may be some issues with soy, but I think you said it yourself, you eat a lot of soy, this is probably the bigger issue, your reliance on a single food stuff. Variety is important for everyone but even more so for you because you can not access a whole area of proteins, vitamins and trace elements obtained through meat. So to compensate you will need to eat a wide range of foods, cut your soy intake by replacing some of it with other legume types and replace more with a range of higher protein, greens, fruits, roots and nuts, remember wholegrain cereals also contain good protein levels. You will have to do some research yourself because only you know what you like and don’t like or can access locally, just start one change at a time, look up some high protein non soy vegitables and next time you shop, buy these instead of your full soy quota, next time do the same, so week by week you will gradually change the dietry make up of your pantry and that’s what you’ll eat. Never make massive dietry changes all at once, particularly in your condition, as this can bring about imbalances that could feel like medication side effects and you won’t know what is wrong.
The main rule with GD is patience, irrespective of whether you’ve had RAI, Surgery or on ATD’s the graves is there and will show up as symptom flare ups if you change too many things at once, and that includes meds, supplements and diet.
Slow and steady wins the this race.
Good luck with everything,
I’m sure you will be a beautiful bride and have a wonderful wedding.
Congratulations in advance.

[Harpy]

in reply to: having a bad week #1064217

Hey there fj122876
Just exceded the 5,000 character limit per post.
Just wanted to say
Good luck with your Journey I’m sure you will feel better soon.

[Harpy]

in reply to: having a bad week #1064216

Hey there fj122876
Just had a read of your other posts to get a handle on where you are.
Short answer – Yes it is likely you will experience symptom flare up’s as the GD ebbs & flows in your system, but over a longer term of treatment you will see overall improvements and a lessening of the flare ups as your body heals. There is another GD person that I have been conversing with who actually had the Stomach/Nausea issues from the start and has got rid of that now only to have it replaced by ravenous hunger.
Long answer – GD is not a disease of the thyroid, the thyroid hyperactivity is just another one of the symptoms along with the Thyroid eye disease, and the shin thing (can’t remember the name), and a whole host of other primary, secondary & tertiary symptoms.
The actual disease/condition/trigger lies one or two levels below the antibodies, my current understanding is there is a trigger, possibly stress (short or long term), poor diet or environmental toxins, which cause a shedding of a protective chemical layer on specific "silent genes", once this layer has been stripped the gene becomes active and starts producing conditions which then encourage the antibodies to proliferate, this is the inappropriate autoimmune reaction, and is believed to be the cause of a variety of autoimmune diseases including GD, some diabetes, rheumatoid arthritis, MS and also some cancers. How the diseases manifest and which organs are attacked is dependant on where the weak points of our bodies are.
With GD it is the thyroid which is one of the main targets of the antibodies and it is very important to get the hormone levels under control as the hyperactivity that comes about causes further nutrient depletion, which then causes the cascading symptoms which form like a nasty feedback loop, the worse the symptoms get, the more the antibodies rise, causing further agravation of the symptoms etc. etc.
So you need to think of the ATD treatment (MMi dose) kind of like first aid, it stops the symptoms getting any worse and then it is about taking actions to heal the body and repair the underlying damage, reduce stress, eat healthy with a good balanced diet high in fibre, fruit, veg, wholegrain carbs, and healthy meats. Your innitiative in yoga is good as it helps relax both body and mind, walking is also good, just not power walking, not too strenuous.
It sounds like your GD may have been building over a couple of years as with most cases, this usually means it will take a proportionate time to heal your body, kind of like credit card debt, you can go for a long time with minimal pain while the debt grows, but then it hits and you have to be very diligant for a long time to clear that debt, it’s so difficult because the interest (antibodies) just keep adding to your problem, but with due diligence you will clear it and you will get over the GD with a new found knowledge and respect for your body.
Irrespective of what your long term decisions are ATD’s, RAI or Surgery, remember they only deal with the thyroid symptoms and do not cure GD, there is some research going on currently on more specific chemicals re the gene theory, but most of these are focussed on the cancer side of things, but there will likely be flow on effects re GD in coming years. Whichever way you go you will still need to put yourself into the healthiest state possible to assist the healing process.
It appears we all have these antibody flare ups quite regularly and our bodies repair the damage and we are none the wiser, sometimes the flare up is enough to overcome our bodies and conditions like GD are the result.
There is some evidence that ATD’s also have a suppressive effect on the antibodies as well as the thyroid hormone levels as well as other possible effects, thats why the relationship between hormone levels/symptoms and ATD dose is not necesarily conform to a direct one and sometimes it may need to be adjusted up or down throughout the course of treatment depending where you are. The other underlying symptoms of GD may also explain why so many people, after RAI or Surgery have such a hard time some taking years to get their hormone replacement levels right.
I do not think GD is treated seriously enough by the medical profession, as it is a very complex and debilitating condition, no matter how you flip the coin there is no easy fix and patient participation is of paramount importance in the healing process.
Personally in my opinion, not withstanding any overriding life threatening situations, the first course of treatment should be ATD’s for 6 to 12 months to allow people to achieve some semblance of normality and get their knowledge base on all of the current three main treatment protocols up to speed so that when it comes time for them to make a choice on long term treatment for themselves they can be sure they have made an informed decision and are fully aware of pro’s & con’s of each option.

[Harpy]

in reply to: On MMI and I am concerned I am going Hypo #1064298

As per all above and in particular what Kimberly said, no matter how you flip the coin this is an extended process and there is no such thing as a quick fix.
Becoming aquainted with your condition and it’s signs will put you in a better position to deal with the symptoms, there are quite a few different factors causing your symptoms, remember the hormone levels are also a symptom of the condition, the actual cause is whatever it was that stimulated the antibodies which attach to the thyroid and cause it to overproduce. The MMI helps to push the Hormone levels down and this reduces a lot of the other symptoms as well, but it takes a little bit of time as your body finds a balance with the MMi dose which will need to be adjusted occasionally and sometimes it may not necesarily appear logical, because it is actually treating a symptom not the cause.
Don’t despair though because you will gradually find stability and your symptoms will become less obvious and more subtle as your body starts to heal.
Keeping a diary is always a good idea, because you can look back through it and see the positive improvements, and that you are getting better, because we get used to the current state. Over time symptoms will dissipate and you won’t even realise until someone asks you about a particular symptom and then you’ll have to think about when the last time you noticed it.
My partner is now completely symptom free and her hair, skin, nails are all great and she looks and feels better than she has ever been even before the GD diagnosis, FT3 & FT4 levels are spot on and we are just looking to see the TSH go up a litle more and then continue the reduction of meds.
So there is light at the end of the tunnel, but you do need to start looking after yourself both in diet and lifestyle to help your body heal.

[Harpy]

in reply to: long term undiagnosed graves? #1064271

Haven’t had the pleasure before so welcome on board.
I agree with you fully my partner had some constant symptoms and occasional flare ups with periods of anxiousness and fatigue over a good 20 years before she was diagnosed with GD, although her Endo is insistant that it does not behave that way I am dubious, primarily because she probably was not tested for her Hormone levels and other blood levels were most probably in the normal range. What a lot of people forget is that the thyroid is not the cause of the disease, it is one of the victims and is reacting symptomatically to the antibody onslaught. You may well have had the antibodies present causing other issues before the thyroid finally capitulated.
It appears that our diets, lifestyles, environmental toxins & stress factors may well be contributers to making our bodies succeptable and then one of these may be severe enough to cause a final capitulation which is then manifested as Graves or another of the related autoimmune diseases.
Anyway I’m with you on the long term build up vs the sudden disease theory.

[Harpy]

in reply to: GRAVES AND FAT! #1064416

I don’t know where you guys are at with your dietry side, just wanted to mention a couple of things.
When the body is in the disease state there are a whole lot of nutritional imbalances, which cause all sorts of issues like misplaced cravings where it is seeking a particular thing, like for example Magnesium which may well manifest as a chocolate craving but it gets a whole lot of fat & sugar at the same time. The other issue is that it can’t fully what goes in and just dumps things where ever it can causing inappropriate weight gains.
The best thing you can do is get as much healthy food in, like fruit and veg, get a big variety to expose yourself to lots of different trace elements. Restrict saturated fat intake and try to eliminate highly processed foods, eat only wholegrain carbs, white flour is pure carbohydrate and you don’t need that, you have enough fuel sources what you need is all the trace elements, enzymes and proteins to utililize the carbs & fats effectively. Suppliment with dietry fibre, most of us don’t get anywhere near enough, psylium husks & oat bran are great as they also contain lots of vitamins & cofactors and in addition it slows progress of foods through our gut allowing our body to better absorb nutrients and also binds Toxins on the way out and stop them being reabsorbed. Your diet must be balanced not restrictive, so any diet that says no carbs or only protein etc. is going to be bad in the long run.
Try to get some testing done to see if there is a particular nutrient you are lacking in then get appropriate supplementation to correct this. Graves causes a nutrient drain and it can take a long time to correct this balance, regardless of which treatment path you choose, get the Hyper symptoms under control by bringing down the Hormone levels, then attend to the nutritional side to help your body heal.
Good luck with it and I hope you can get something from my rambling.

[Harpy]

in reply to: Throbbing/pulsating leg pain – Graves related ?? #1064303

Agree with all above, get a professional opinion, may be med related.
May also be a derivative of the muscle fatigue issues, and often this shows up as muscle cramping in the lower legs, in particular, particularly if there is other circulatory issues, it’s always hardest for the heart to get circulation through the legs because of the distance and gravity, that is one of the reasons walking is so healthy, but not strenuous, just easy happy relaxed walking, does it disipate if you go for a walk?
There may also be a relationship with the Calcium/Magnesium balance/deficiency as these two are at the heart of muscle contraction & relaxation.

[Harpy]

in reply to: Very wierd #1064318

The muscle fatigue/cramps, as are most of the symptoms, most likely due to a depletion of nutrients in the body caused by the Hyperthyroid state, once your hormone levels stabalise and your metabolism slows down a bit you will stop burning up nutrients so rapidly and your body will get a chance to re build it’s stores, particularly of trace elements.
It is important to allow time for your body to start healing, by giving it plenty of good quality foods, the fresher the better, light exercise is good to get blood flowing and still the mind, but do not overexert yourself as this will stress your body and work against you.

[Harpy]

in reply to: Could use some advice or good thoughts #1064370

Apart from sharing experiences and information with others a very important function of the forum is to allow people to vent, a place to release some of those frustrations, it helps in a small way to relieve some stress and thats always good.
As for the treatments available, ATD’s, RAI or Surgery, each has it’s own pros & cons and I don’t think anyone could say which is better or worse, each individual needs to look at what option is most appropriate for them and the most appropriate option is dependant on each individuals current state, needs, fears, health etc.
James has a similar story to yours, he went into remission a couple of times and had a couple of relepses, but each subsequent remission was longer, and each relapse was shorter and currently he’s sitting at 7 years in remission and he sees this as positive signs, I’m sure he’ll come and correct me if I have misrepresented him.
My angle is whatever treatment path you choose, try to compliment it by also making positive changes in your diet & lifestyle in addition to some actions in stress reduction, as these things contribute significantly to healing the body.

[Harpy]

in reply to: One year check-up, and some questions #1064442

Sorry for all the questions, but we can only go on the information you provide and relate it to similar experiences that we have had or read about and relay what seemed to work in those cases.
It sounds like you still have significant Hyper symptoms and it seems odd that if you are underweight that they will not increase your dose, in most cases it is the hyperthyroid condition that causes the weight loss, unless there is another factor at play.
You say your dose increased in may, have the symptoms got worse since then or have they stayed much the same?
Beta blockers should only be required at the start and are not good to use long term if you don’t have to. The ATD’s(methamazole or PTU) block the thyroids production of T3 & T4, but when you are initially diagnosed there is a lot of these in your blood and the Beta blockers are only used to block cellular uptake of the excess T3 & T4 until it is flushed out of your system, usually about 4-6 weeks, then you stay on ATD’s only.
Which medication are you on?
Your body will definately be out of balance and going on the pill to get some regularity there is probably ok as a short term measure, others may have more to add to that.
I don’t know what the protocols are in other countries, but here in Australia my partner requests copies of all her results and has a complete history from the time she was diagnosed, which helps if you want to engage a secondary practitioner like my partner has, she has her Endo for the Thyroid meds as well as a Naturopath who has put together a nutritional program to try get the bodies nutrition back up and correct some of the deficiencies.
The three factors that contribute to the severity of the condition are Nutritional imbalances/deficiencies, Stress & Environmental Toxins. By working on these improving these three factors you can assist the healing process.
Next time you get tested, ask for a copy of your results so you can gain an understanding of what your situation is.
The test results should have free T3 (fT3), free T4(ft4) and TSH levels as well as there respective normal ranges, in addition there should also be a full set of bloods that test a variety of blood factors and their respective ranges.

[Harpy]

in reply to: One year check-up, and some questions #1064440

Just had a look at your previous posts and you haven’t mentioned anywhere if your T3 & T4 are in normal range.
It takes some adjustment of medication in the first 12 months to get the dose right, particularly in the first 3 months.
You should have been tested after 4 weeks on meds, then maybe after another 6-8 weeks, then maybe every 3-6 months if your levels are behaving. If they are not then more frequent testing may be required to get the dose right.
If you have not been tested since starting the meds almost 12 months ago, then who knows where your levels are, the dose may be too low to get your thyroid hormones under control and hence continuing symptoms and getting worse because the longer you are in this state the more nutrient deficiencies will appear in your body.
I think in one of your previous posts you may have low iron levels, have they improved? Iron supplements are best absorbed with food (meat), and iron from vegatable sources also goes better with meat and always include some vitamin C with your iron intake as it improves absorption, so have a glass of orange juice with your iron meals.
Your healing process will be much better if you are informed about the disease, treatments available and understanding where your body is now. This will help you make informed decisions.
Do you have a record of what your resting heart rate is, is it going up, down or is remaining steady?
What about your body temp?
Didn’t pick up your sex, if female, are your cycles regular, long or short, do you suffer excessive PMS etc.
All these things are indicators you can use to track your progress in addition to regular blood tests.

[Author]

Posts