[Harpy]

in reply to: RAI vs Surgery vs Meds #1063966

jcupcakes
Methimazole is more prone to giving the Hives/Rash reaction, but it doesn’t mean that you are completely allergic to it, often that just means, as you have noticed that your dose is too high.
Have you had your FT3 tested?
You mentioned FT4 & TSH, but not FT3 which is the actiove hormone, just making dose adjustments on FT4 & TSH is not always appropriate and along with the FT3 the patients own physical symptoms need to be taken into account, did you feel hyper when your FT4 was higher, was your heart rate actually up?
The one thing about GD is it is not a simple condition and there is no easy quick fix.
All of the three most effective and commonly used treatment options all have their pro’s & con’s and most of what anyone tells you will have some bias, so you will need to look at all the information presented to you and make a decision that you will be comfortable with.
Different doctors will have different preferences for treatment and different countries also seem to have different protocols for treatment of GD so there is obviously more than just medical science that drives these differing attitudes.
From what I have read there are also a lot of incompetant medical professionals out there as well, not that I’m suggesting your doctor is incompetant, just that you need to be informed enough to be able to make decisions that you are comfortable with, you need to be able to ask appropriate questions and have the knowledge to judge whether the answers you are given are to your satisfaction.
I’d suggest you look at a variety of sources to gain as much knowledge as you can about your condition and what the different treatment options may mean for you.
The link below is a good resource written by thyroid disease researchers:
http://www.thyroidmanager.org/
Good luck with your journey and I hope you feel better soon.

[Harpy]

in reply to: Very frustrating and need some serious help #1063920

To say that you have recieved substandard care would be an understatement of the highest magnitude.
I have not heard of GD without the TSI’s aka Thyroid Receptor antibodies, but as I understand from a previous post you did definately have some thyroid issues.
You obviously do need treatment, the question is what, you are where you are and the main thing you need to have sorted is to get your replacement hormones right and you will need medical support to get the appropriate tests for this, that will include the FT3, FT4, TSH, if things are not stabilising then you may also need to test for RT3 and I would also test for the TSI’s and other antibodies, even though you have had a thyroidectomy, sometimes there is enough tissue left to still be reactive and produce hormone and I have also heard of some people having other thyroid tissue in a different part of their chest cavity that will produce thyroid hormone.
The main thing is to get that replacement hormone right and then you can continue working on your other health issues, You will need a definative diagnoses on your GO so that you can rule out other causes.
Some people do not respond well to the synthetic T4 hormone and may also need some T3 as their body’s conversion rate is poor, some do much better on the natural hormone, but be aware that the desicated natural will most likely contain some antibodies as it is after all just dessicated porcine thyroid gland, you will have to try these things and work out the kind of person you are by how your test results are.
You must get medical support now as you will need the replacement hormone ongoing.
I hope someone else here can direct you better regarding how you go about getting better medical attention and consideration from your doctors, I’m in a different country and couldn’t hope to guide you on that path at all.

[Harpy]

in reply to: No way to get treatment #1064011

Angel
Welcome on board, and feel free to vent to your hearts content, just getting some of your frustrations out can help you a little bit emotionally at least, I know you are trying to do the best you can regarding healthy diet etc. so I won’t go there.
I assume you are in the US somewhere, I’m not and am not familiar with the system.
If you can post up your location, just city & state, maybe someone here may have some ideas and avenues that you could try to help you get the appropriate medical attention.
Throwing some positive thoughts your way, hope your hubby finds work soon so that you can get back on track.

[Harpy]

in reply to: Recurring Graves Disease? / Chronic Pain #1064024

Hey John
Sounds like you’ve had a bit of a rough trot with that spinal surgery, and that may have been the trigger for a relapse of GD or other factors may have contributed, who knows.
From what I have read, indications are that it takes an average of about 4 years on ATD’s to reduce antibodies to a point where long term remission is possible, some people may take 1 year, whilst others may take 10. Most people who do achieve long term remission will often have relapses, with each remission period being longer than the previous one. Although you will always need to be diligent, regarding a possible relapse, after you go into remission, but that is no different to the diligence that is required after Surgery or RAI in managing your body’s health, as others have said ultimately it is up to you which way you go.
I think that the HypO state is considered a minor issue by the medical profession, easily managed by dosing with replacement hormone, but that isn’t completely true and for some getting that level right may take years and some never do get it completely right for whatever reasons, so I do not see any of the 3 options(ATD’s, Surgery or RAI) guaranteeing an easy quick solution, Hypo is just as bad as the Hyper.
You said GD is complicating your life, not sure in exactly what context you made that, kind of sounded like it was, I have this thing hanging around and I want it removed, GD is not external, it is not a virus or bacteria, it is a part of you and your bodies behaviour and the sooner you embrace this aspect the easier things will become, most people see all their illnesses and conditions as coming from outside, and want an outsider to get rid of it, in most cases it is our behaviours which contribute to our ailments and very often it needs us to correct our behaviours to get onto the healing path,
But sometimes of course it’s just a case of "S#!t Happens" and you just gotta deal with it anyway
No one here can tell you what is right for you, you need to do your research, so that you can make an informed decision and be responsible for the decisions you make.
Good luck with your Journey, and I hope your Sister and Mother feel better some time soon.

[Harpy]

in reply to: Odd Symptom #1064028

Somero
Great that you have had a positive shift in your symptoms.
Just recently I stumbled across someone else making the same comment about the "heavy walking in water legs", this may be part of the muscle fatigue issues that GD can bring, I’ll come back to you if I come across it again.
As you’ve no doubt read already there is a whole book of symptoms associated with GD, not everyone gets all of them and not everyone gets them in the same order, so everyones journey is a little different.
Keep a symptoms diary and note all these things down, how your body feels, how you feel emotionally and anything odd that you notice, that way you will have some documented evidence to discuss with your doctors when your appointments come around.
Keep adding positive actions to your regime, like healthy diet, stress management & relaxation, get some light exercise like walking, even if you do feel like you’re dragging your legs around, don’t push it though and also get plenty of sleep, try to get regular sleeping and eating habits, GD likes things to be steady, any sudden changes like skipping meals or lack of sleep can agravate GD symptoms.
Great though that you can feel a positive change, there will be more as your body stabilises, there will be ups & downs, but overall your symptoms should begin to subside.

[Harpy]

in reply to: Anyone else allergic to thyroid meds? #1064062

Just to clarify
My comment on Potassium Iodide, was not just a passing comment, I intended it as something that Jules may have a look at, as it may be something she will need to understand the use and effects of in relation to her future treatment and being informed means she will be in the position to have a meaningful discussion with her doctors.
It was the preferred method of treatment for Hyperthyroidism prior to the advent of ATD’s, RAI & improvements in surgical procedures and is still used in a lot of cases prior to both Surgery or RAI and sometimes after RAI to protect from the Hormone dump from the Thyroid. If anyone is considering Surgery or RAI because they are allergic to ATD’s then it is wise to brief yourself so that you can actively engage in discussion with your doctors about your treatment, and how the process will take place and what to expect, this discussion will help you to make a judgement to some degree if the doctor you are talking to is going to be appropriate for you or if you need to look further.
I am not suggesting that Jules, or anyone for that matter, embark on a course of self medication and did suggest that she talk her doctors about the Potassium Iodide.

[Harpy]

in reply to: Anyone else allergic to thyroid meds? #1064059

Sorry to hear you have allergies to the ATD’s
As for other treatments, I think they used to use iodide to control thyroid hormone production, it does not change the state of the GD but blocks thyroid production and reduces your hormone blood levels, I think it was potassium iodide I read about, isn’t used as long term treatment because it does nothing to improve the disease state.
Talk to your doctor, you may need to use something like this to reduce your levels before Surgery or RAI, I think they normally prefer to get hormone levels down before either of those two treatments.
Others who have taken either of these two treatment paths may be able to clarify this.

[Harpy]

in reply to: Any feed back on NMD’s? #1064118

As ewmb said above
There is nothing quick with GD, and everyone who gets it gets the anxiety, fear, frustration etc. and other symptoms and no one gets it exactly the same.
You have to have faith, you will get better!
The only thing I think you need to attend to is to get that "itchy" thing checked out, it may be just your version of GD, but it may also be a side effect of the meds, talk to your doctor as soon as possible to clear this up.
Otherwise hold on tight, it’s a rollercoaster for a little while as your condition stabilises,
but you are not crazy and you will come through the other side, once you are stable you can then think more clearly about which direction you want to take. The first stage is the hardest and for most people the worst is over in about a month and then by three months you should feel nearly back to normal and will most likely be on a reduced maintenance dose of medication.

[Harpy]

in reply to: RAI vs. thyroidectomy #1064426

Just a couple of points,
Firstly the fact that you are feeling pressured, indicates you are not ready to make a decision, your Endo needs to clearly explain to you what their reasoning is and back this up with some evidence, like indications that your liver function results are reduced or your white blood cell count is down because of meds
The symptoms you describe muscle weakness & joint pain aren’t attributed as side effects of Tapazole, or not that I found, it’s usually skin conditions like hives or flue like symptoms which indicate a white blood cell count issue.
If you are actually having a reaction to the Tapazole, you could also try switching to PTU to give you time to get things clear in your head before you make any decisions.
Muscle & Joint pain are symptoms of GD, so it may just be the course of the disease in your body.
What has been the course of your symptoms like anxiety, nausea, hunger, muscle pain, joint pain etc., some people get them all at once only get some and others get them in sequence, one after the another over an extended period.
There is also a possibility that your symptoms may be related to a different condition like rheumatoid arthritis which is an autoimmune condition that causes inflamation of the joints, you should consider this as well and discuss this with your Endo as well. The thing you should realise about GD is it’s cause lies deep inside your body and the thyroid response is just one of it’s many symptoms, correcting the thyroid response is only dealing with the hyperthyroid symptom, other symptoms will continue until the disease runs it’s course.
As a matter of interest you mentioned about being Hypo, did your levels actually go too low, what are your test results & ranges?, are you getting TSH, free T3, free T4 & TSI(antibldies) tested?

[Harpy]

in reply to: Any feed back on NMD’s? #1064114

I think you meant "Iodium"
Iodium is a Homeopathic remedy, Homeopathy as I understand, works on the less is more theory, dilution potency, and is disregarded in scientific theory because the levels of active ingredients can hardly be measured on any scale. Homeopathy is quite significant in Europe and growing rapidly in India, Iodium I believe is iodine based, but it’s concentration is so small it would be better described as the essence of iodine.
We did look at Homeopathic remedies but did not take it up, mainly because of a personality clash with the practitioner. I haven’t heard of any side effects or drug reactions as the principles of homeopathy are that it works outside the actions of conventional medicine or nutrition theory and were advised that other medication my partner was taking would not be an issue.
Sorry to hear you have the muscle fatigue so bad, depending on the nature of the symptoms, do you get cramping, restless leg or just general tiredness, maybe try do some research on Carnitine (my partner uses Acetyl L Carnitine) and it may also be a Calcium:Magnesium balance issue, have a look at these as well and you can discuss them with your Endo also.
Do you have bad pre period cramps?
Generally no supplements will give instant relief, it will usually take a week or two to see any effects.
Do you have any dietary restrictions? or conversly is your diet heavily loaded with any particular foodstuff eg are you vegitarian and eat a lot of Soy, this can also aggravate some conditions.
If you don’t have any restrictions then load your diet with a big variety, fresh fruit & veg, healthy meats, nuts and seeds, wholegrain cereals only, reduce carbs and processed foods, think fresh and raw as much as possible, eliminate take away, food colourings, flavourings, artificial sweeteners, trans fats and Soy intake should be controlled, eat only the fermented forms and even those should be limited.
Keep up light exercise like walking it is good for circulation and also stress relief.
Do you have any Anxiety or Nausea issues? or other symptoms?
Sorry if you’ve answered these questions in your other post, will have a read after I post this.

[Harpy]

in reply to: Any feed back on NMD’s? #1064110

Agree with all above.
My partner has been on ATD’s(PTU) for 3.5yrs and has been working with both her Endo & a Naturopath, to heal her body, she has adjusted her diet, lifestyle and is taking a range of supplements along with the PTU, there is a lot of people who have gone down this route. GD is a complex condition and and that’s about the only thing everyone agrees on, it’s cause lies deep within the body and the thyroid effects are merely a symptom of the disease.
If you intend to go down this path then the first thing you must do is educate yourself, this goes for anyone with GD regardless of what treatment path you ultimately choose, anyway you have to be in a good position to be able to decide if a doctor of any type knows their stuff regarding thyroid issues. Look far and wide for information, it’s unlikely you will get all the info from one source.
From what I have seen it takes an average of about 4 years to achieve remission using ATD’s, but it may be 2 years or it may be 10, but that doesn’t mean you will be Hyper for that long, most people stabilise their thyroid hormone levels in 1 to 3 months, and from that time it’s pretty much normal behaviour, just with care as you still have GD even though you may feel ok. Then it is a case of monitoring hormone levels for dose adjustment, Antibody levels to track the healing process, liver function and blood tests to keep an eye on potential side effects of medication, although indications are those that have side effects do so within the first 3 months. I would also keep a symptoms diary, record your resting heart rate and body temp daily(morning is best) and also keep track of your menstrual cycle as these are all good indicatoors of your body’s health.
The ATD’s, MMi or PTU will get your thyroid hormones under control, allow your body to relax and give you time to think.
Supporting your body with a healthy diet and taking stress reduction actions like meditation, yoga and walking regularly are the first things you should do, don’t rush into supplements or alternative therapies, GD is a long trek not a 100 yard dash.
Think of it like climbing a mountain, currently you are on the road heading toward the mountain, you can see it a long way in the distance, this is when you prepare yourself mentally, you study the shape of it and plan your ascent, theres a long way before you actually start the climb, by the time you get there you will have considered all the options available to you and their respective pro’s & con’s so when you get to there you will have your final treatment plan in place and can begin with confidance knowing that it is right for you.

[Harpy]

in reply to: Low Energy Level #1064129

Assuming female??
Are you keeping track of your Menstrual cycle? it may be related? thyroid conditions can magnify other bodily cycles.
Where are you with diet?, just healthy balance or are you following a regimen of some type.
Generally the best direction is lots of fresh fruit and veg, healthy meats, minimise carbs, avoid as much processed foods as possible and limit soy intake.

[Harpy]

in reply to: what part of graves do we keep? #1064149

The answer to your question is Yes & twofold.
In the sense that once you have been there, you will always be aware of it in some way, If you achieved remission through ATD’s then you will always be on the look out for a recurance, If you had RAI or surgery, then there is a possibility if not complete, then the thyroid can re grow and start up again, or even if complete then there is the replacement hormone dose as a reminder of where you have been.
Then there is the discussion of the underlying cause of the disease, what causes the antibodies to flare up and start attacking the TSH receptors on the thyroid, even if you remove or disable the thyroid, this controls the T3 & T4 levels and reduces or eliminates the hyperthyroid symptoms, but does not eliminate the antibodies in the blood that attack the TSH receptors and it appears that TSH receptors are present in many parts of our body including muscle, brain, bone, kidneys, pituitary and other tissue, not just the thyroid, hence why some people get the TED, Pretibial myxedema, or other symptoms many years after RAI or Surgery. So it appears that it is important to continue treatment and tests for the Thyrosine Hormone Receptor antibodies (TSH-Rab, aka TRab, TSI), to get the body back in balance. With research pointing to TSH playing an important role in other parts of the body, it is starting to look like getting TSH levels right may be nearly as important as controling T3 & T4 levels, as it may play a role in muscle wasting issues as well as bone density, amongst other things. It appears that the persistently low TSH in GD is due to the AB’s attacking the TSH receptors in the pituitary, effectively telling it there is too much TSH don’t make any more, whilst the actual blood TSH is effectively 0.
So I hope that gives you an explanation as to why you will always have GD, and even those like me, who don’t have it (my partner does), should be aware that we are only one Antibody flare up away from it or one of it’s autoimmune relatives and that also includes a lot of cancers.
This doesn’t of course mean you will suffer the symptoms for ever, but should be aware of taking more care with your body, keeping a healthy diet, healthy lifestyle, and laughing lots, that feeds your Natural Killer cells, which are supressed in autoimmune conditions, they love a good belly laugh.

[Harpy]

in reply to: Remission? What do you think? #1064157

Christina
Agree with everything Ski said
Going on your dates you have been on treatment for 5 years or so and your history sounds like my partner as well, we believe she had undiagnosed episodes that corrected themselves over the last 20 years and the last one in 2007 when she was finally diagnosed she was totally frantic, and the Endo commented she’d never seen levels so high.
She’s been on PTU for 3.5yrs now, and the last 6 months has also made major changes to a low alergenic diet and stress management techniques, like yoga & meditation, and she feels great, her T3 & T4 levels are perfect and TSH has just started showing signs of movement, she was on 250mg/ day for the last 12 months & dropped down to 150mg/day in march and we expect to reduce this again at the next Endo appointment in October.
So I am interested to know exactly which Antibodies you just had checked and what the levels were, as I understand it there are three types common in thyroid conditions, Thyroid peroxidase antibodies (TPOab), Thyroglobin antibodies(TGab) and the Thyrosine Hormone Receptor antibodies(TSH-Rab, aka TRab, TSI), it is the third one which seems to be the one which is the main culprit. It attaches to TSH sites on the thyroid and stimulates them just like TSH causing excessive hormone production, there has been some research which has shown that there are TSH receptors in other parts of our body as well including, muscles, bone matrix, brain, kidneys & pituitary, so it appears that TSH does a lot more than regulate T3 & T4.
It would be logical to assume if the antibodies attack the receptors in the thyroid they will also do the same in the rest of the body, including in the pituitary where TSH is produced, this is the reason that even though T3 & T4 levels are right, the TSH remains low, because the antibodies in the pituitary tell it not to make any TSH, so if your TSH is still low then this may be an indicator of ongoing antibody activity. and may also help explain why so many people experience the short term remissions +/- 12 months, after they stop meds, they are ok for a while, but gradually the AB’s multiply and they start again.
It appears that ATD’s also have an immunosuppressive effect on the antibodies as well as reducing hormone levels, so an extended weaning period before stopping meds altogether seems to give a greater chance of remission. Even when you stop meds altogether, get routine checks done for hormone levels and Antibodies if you can, first after 3 months and then every 6 months for the first couple of years to pick up any changes, the antibodies can flare up significantly before you feel any symptoms and this may help you avoid the worst of it if you were to relapse.
I know that James who pops up here occasionally is currently 7 years clear of meds, he went in and out of remission a couple of times, each remission lasting longer and each relapse being shorter and he viewed that as positive progress.
Maybe send him PM and ask him about his story.
I don’t know anyone else here in remission after ATD’s because I think after they get better, they just get on with their lives and forget the internet, and good on them, but unfortunately it does load these type of forums with those that are suffering GD currently and the die hards who are a treasure, they are better, but remain comitted to helping others, and I tip my hat to them.
Please keep us in the loop on your progress, remain positive, take good care of your body.

[Harpy]

in reply to: Do you do anything special the day you have blood drawn? #1064183

Thila
Taking these relaxing actions will help with your emotional state, blood pressure and heart rate, as appointments always raise your nervous levels, but I don’t think they will have any effect on your actual T3 & T4 levels, so rest assured regardless of how nervous you are your levels will be what they are.
As your at the 7 week mark, this is around the point when most peoples levels normalise and I suspect you will be coming up to a dose reduction to come down to the maintenance dose, usually around 10mg MMi.
Hope all goes well,
I’d be interested in seeing what your levels of free T3, free T4 and TSH have been through your test history, I am doing some charts, comparing my partners test levels to others in their treatments and I think there is a consistant pattern.
Have you had your antibodies tested?, the main ones to test for are Thyroid Receptor Antibodies (TRab) aka TSH-Rab, TSI.
They are the ones that are stimulating the TSH receptors on your thyroid to produce excessive T3 & T4 even though you have very little TSH in your blood.

[Author]

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