[Harpy]

in reply to: Carb Intolerance #1180949

Regarding links for Thyroid & Nutrition, I haven’t really seen anything specific that I would quote, it is mostly individuals opinion and experience.
Not being able to find anything specific for thyroid I just broadened my search to determine what is the healthiest way to eat and live, as you can imagine there’s a lot of opinion and biased research to lead one in all directions, after a while we found what works for us, still fine tuning and researching, but I don’t see our dietary path changing much.
The one thing I can say on that front is eat the freshest most nutritionally rich foods you can get and reduce processed foods as much as possible.

A specific note on Low Carb diets, I don’t think there is anything wrong with them and my diet is generally lower in carbs then most people, but if people reduce their carbohydrate intake too rapidly without giving their bodies time to adapt, some people may risk down regulating metabolism which can have similar outward effects as being Hypo and will add confusion to dosing of either ATD’s or Thyroxine.
So if you do have Thyroid (or any other) disease dietary changes should be slow & steady, give yourself 6 months+ for a significant dietary transition.
My preferred approach is to tell people to just gradually transition the pantry, over time just buy more of the healthier stuff and gradually eat what’s left of the not so healthy, this way there will be less impact on ones psyche and issues of craving, it will also work in with learning to cook different meals, so just take it slow and keep it positive.

[Harpy]

in reply to: Back to hyperT? #1180982

IMO your treatment was pulled too soon, did you have any antibody testing done?
Good to hear you have a better Endo to work with, but as these things go there will be some give and take, try to see if you can get Thyroid Receptor AB’s tested these will confirm if you are heading back to hyper land and maybe you can get treatment sooner rather than later.

TSH (Thyrotropin aka Thyroxine Stimulating Hormone) is produced by the pituitary gland and is the one that tells the thyroid to produce T4 (Thyroxine), so TSH levels precede T3 & T4 levels.
It goes back at least one more step to TRH (Thyrotropin releasing hormone) which is released by the hypothalmus to stimulate pituitary to produce TSH, signalling before this is likely in the CNS (Central Nervous system), various inputs from the body report their status with thyroid hormones and then the hypothalmus responds.

We know antibodies are active in thyroid and pituitary, but don’t really know what there role is, IMO they are a back up system because body cannot respond through normal means for whatever reason, but we do know that they do subside with extended treatment (medical & personal health improvements).
Some, though very few have succesful remission within two years or less, but most will require longer treatment times, in my partners case it was 5 years to get TSH to return to normal and we are into year 7 now and she has been weaning down meds for 18 months.

If you can begin to forge a supporting relationship with your new endo and look towards a longer term treatment protocol, find your sweet spot on the meds and let your body do the healing, this would be good, don’t be too pushy, but don’t be a pushover so there is a balancing act as in any relationship.
Wishing you well.

[Harpy]

in reply to: Is Graves as a response instead of a disease? #1180924

I firmly believe that GD is a response not a disease, there ure underlying health fundamentals that need to be corrected before the thyroid will rebalance and antibodies will abate. Some of these factors are diet & lifestyle related, others may be more subtle disturbances such as circadian disturbances, on our journey into health we looked at all the areas of our lives and tried to make positive changes, much research and we are still learning new things and adapting our lives and I think that in itself is a significant component, the positive engagement with ones health and becoming more intune with your own body.
Your body has been sending out messages, just no one has been listening, learning to listen is a big part of ones health.
The process is long and slow, patience is required, ill health did not happen overnight and hence good health also takes time, the body needs this time to heal and re balance itself.

[Harpy]

in reply to: Carb Intolerance #1180946

Carbohydrates by definition are sugars, starch and fibre, what most people refer to commonly are the glucose and starch components.
I’ve posted a bit of stuff on the corrolation between chronic disease and malfunction of glucose metabolism (blood glucose), this relates to diabetes, CHD, Thyroid and many other modern diseases.
The Glycaemic index is often used as a guide for sugar levels, many people don’t realise that bread has a higher GI than pure sugar, the starches in flour are readily converted to glucose and are a straight hit to blood glucose levels, whereas sugar is a di-saccharide of Glucose & Fructose and hence is only about 55% Glucose.
Regarding the Pasta Potato thing, there is another factor at play there, pasta (&cereals) is what is known as an acellular carbohydrate, basically pure uncontained starch, potato on the other hand is a cellular carbohydrate, starch contained within cell walls This simple distinction means the carbohydrate in potato is absorbed slower as the body needs to break down cell walls (fibre) to get access to the sugars, in addition potato also contains a lot of solouble and insolouble fibre which travels to the lower intestine and feeds our precious microbiota ecosystem that converts much of this fibre to short chain fatty acids which the body absorbs and uses for energy as well, that’s another story.

I do believe most western societies have a problem with carbohydrates, but I don’t think carbohydrates are bad, IMO the problem lies in the continuous drip feeding of carbohydrates, which means our bodies lose some of their ability to manage fat metabolism and we effectively become sugar “addicts”.
Carbohydrate consumption needs to be managed better, you don’t need to be low carb, but try to restrict carbohydrate consumption to one meal per day, this leaves rest of day for your body to burn fat for energy.
One of the biggest issues is how saturated fat has been demonized in our modern society, yet there is no tangible data to connect it to any of the diseases that it has been associated with, another story, but as a teaser try look up “Ancel Keys” and “Lipid Hypothesis”, you should find some interesting reading.
Eat lots of wholesome food, more Fruit, Veg, variety of meats and don’t be too afraid of fat, except be wary of vegetable and seed oils, they’re probably not as healthy as we have been led to believe.
Manage stress as best you can, be good to yourself, strive to have fun and exercise a bit.

[Harpy]

in reply to: Well, here goes! #1173630

Great post, thanks for sharing, very sobering.
Good to hear you have found some improvements and stability, hope you track down a good Endo soon.

[Harpy]

in reply to: Swollen Lymph Nodes in Neck #1180030

My partner also had a number of complications including swollen lymph glands, enlarged spleen and a collapsed lung, at that stage she ended up with three different specialists to deal with these medical issues.

Although they said theses things were not related to GD, all have resolved as her condition has improved.

But either way, do get it checked out.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170896

Sorry, just a bit of “Aussie” slang.
“around the traps”
Definitions – pertaining to an intimate familiarity with and knowledge of the places where people gather, news is spread, decisions are made, etc..

Below are some other descriptions of the meaning of the phrase to give you some context.
http://belshaw.blogspot.com.au/2010/03/meaning-of-around-traps.html
http://www.urbandictionary.com/define.php?term=around%20the%20traps
http://wiki.answers.com/Q/What_does_Around_the_Traps_mean

In the context of thyroid it suggests looking around thyroid resources and discussion groups to see what is being discussed with regard to this topic.

Maybe you can search around for things like “add back thyroxine therapy”, “thyroxine add back”, “thyroid add back therapy”, “thyroxine add back therapy”, “block and replace”etc. or other combinations there in.

Studies have shown that extended treatment with MM increases the likelihood of lasting remission, so for those that have thyroid hormones supressed too much even with minimal MM dosages, the addition of a small amount of thyroxine allows one to continue with MM treatment and not become hypothyroid.

IMO this allows time for the body to heal the ultimate underlying causes of GD, bring antibody levels down, correct other imbalances and hence increase the likelihood of lasting remission.

I do hope you have more success with finding a doctor/endo willing to work with you to achieve your own personal goals in healing from GD.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170894

On PTU her levels only went low when she was on a high dose of 250-300mg/day in the early stages, but once her levels normalised and she went to a normal dose of 100-150mg/day her levels were very stable and the dose changes seemed to have minimal effect.

Methimazole (MM) does seem to have a much stronger effect in normalising levels and many can go into the hypo range even on maintenance dose levels, even though antibody levels are still high and TSH is still absent.

My partner actually started treatment with MM and her levels normalised very quickly, but she developed a rash and had other complications and was switched to PTU in the first few months, in hind sight it was most likely that her dose of MM was just too high, nevertheless when she switched her levels jumped back up and it took quite a while to get them down to normal on PTU.

From what I have read around the traps adding back Thyroxine while on a maintenance dose of MM seems to provide many benefits in extending treatment to bring antibody levels down and allowing TSH levels to normalise, this seems to be what is missing when many are thrust into a premature remission attempt.

Try doing some more research around the traps and maybe attempt another discussion with your doctor, there are quite a few individuals out there using this protocol with good success, far better than the old Block & Replace that it evolved from, wishing you success in your journey.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170892

Just updating, had another test last month, all levels good and weaning down on PTU dose.

17/02/13
PTU reduced to 37.5mg/day

28/05/13
FT4 – 13.7 (9-20)
FT3 – 4.2 (2.6-5.7)
TSH – 1.68 (0.4-4.0)

28/05/12
PTU reduced to 25mg/day

So everything is progressing in a fairly stereotypical pattern from what I have read regarding remission from GD, the current medical system had already declared that there was no hope of thyroid recovery after the first 2 years of treatment, but the alternative experiences and recent research suggests that 4 years treatment with ATD’s is about average and an extended weaning period of about 2 years is typically required for a good chance of permanent remission.

When we started this process, February 2007, we never expected it would take this long, but we now have a much better understanding of GD and other chronic diseases and believe wholeheartedly that 5-10 years would be a normal expectation for complete body healing and can not happen unless one is actually prepared to make appropriate changes in diet, behaviour and lifestyle in addition to the medication protocol.

She is currently on 25mg/day which is 1/4 tab morning and night, we have not fixed a date to cease medication altogether, she uses her heart rate, body temp, feelings and other subtle personal indicators to guide her in dose reductions, the next step will be to split 1/4 tab into two doses which will be 12.5mg/day and then doing this every second day etc. gradually reducing until she reaches the point where she feels it is appropriate to cease meds altogether, this is likely to be towards end of year or early next year, but she will know when the time is right.

[Harpy]

in reply to: Is this thyroid or anxiety? #1179199

Sleep quality and quantity is highly underrated in it’s value to the healing process, even if we sleep through the night this does not mean it was complete, there are a number of different levels and although we may remain unconscious, this does not necesarily mean we have reached the depp sleep stages to fully complete the process.
Often people will sleep right through the night, but still wake up tired, sore and irritable, like many other aspects of good health, improving your sleep patterns takes time and dedication, but like so many other health issues like diet and lifestyle, the modern world is structured in the opposite way, so no you can’t have it all.
If you choose all the modern conveniences, world at your fingertips all the time etc., then something has to give i.e. health.
There is a time to engage and there is a time to be still, this was never an issue when the sun ruled our world, but now days we need to make some personal choices on how we manage these conflicts. Personally I rarely watch TV anyway, but the computer is a problem for me and I do try to shut down by 8pm at the latest as much as possible and then pick up a book and do some easy reading before bed.

[Harpy]

in reply to: Meds: once a day? #1179220

donnabgraves wrote:

Harpy – Just curious, do you feel the Paleo diet is helpful with managing GD? My niece is a strict Paleo eater. She tells me it is not a diet it is a lifestyle change and she swears it regulates your entire metabolism, emotions, weight, etc.

I have been thinking about making the lifestyle change and I guess if I knew it helped with GD I would definitely make the change.

Thanks!
Donna

I agree with your niece.
Diet plays a huge role in our physical and emotional health, for my partner the line that we took was if we could improve her overall health in many little ways, then this would put her in a much stronger position to deal with Graves.

It is true there are no diet studies specifically related to GD an that is likely because you can not patent a diet like you can a drug and in addition the medical and scientific community is still locked into a singular cause and effect view of the human body, whereas in reality the body is a complex interconnected community where many different factors interplay to achieve an outcome, be that good or bad health.
I recently posted some studies that used “Antioxidants” to support GD treatment and they clearly showed benefits seperate to thyroid hormone manipulation, antioxidants are just certain vitamins and minerals that are normally present in a healthy diet, so by default these studies do suggest a benefit of improved diet behaviour.

As for diets being restrictive, firstly I think everyone would agree that it does not even compare to restrictions caused by chronic disease whether it be Graves, Diabetes, Heart Disease etc., the second point is that although being on a Paleo style diet may be inconvenient at times, it is not the diet that is the issue, but the quality of “Convenience” foods on offer and rarely have any of these convenience foods been healthy in any way.

If you do choose to change your diet, the only caution I put forward is let it be a gradual transition, do your research, talk to your niece, and over time begin to exclude the poor food choices (processed) and introduce healthier whole food alternatives, just let it be a natural transition over time.

[Harpy]

in reply to: Meds: once a day? #1179213

It is unfortunate, but there are still many doctors and specialists who are not up to date with current information, in some cases it may be a lack of inclination, but IMO most of the time it is likely because of the structure of the medical system and the fact that they are time poor.

This is clearly evident just in the speed of consultations, in our own experience the Endo is always behind in appointments, we usually have to wait over an hour then it’s a quick 10 min how are you, numbers look fine, see you in 6 months and more often than not the Endo looks worse than the patient.

I should have been more specific and stated that the system needs to be fixed so that the doctors are better supported and that they are fully empowered to take proper care of their patients.

Believe it or not there are still Endo’s out there trying to treat GD and adjust dosage on the basis of TSH levels only and that is clearly nowhere near up to date with current practice.

Some people here have very good Endo’s and by sharing that information about their dosing and other details may well help others to ask the right questions of their own Endo’s so that they also get appropriately treated, it may be something they missed in their appointments or a simple oversight by the Endo, but the sharing of information and knowledge is a good thing and may help others to get better treatment.

[Harpy]

in reply to: Is this thyroid or anxiety? #1179196

The anxiety may or may not be GD related, the actual effect is likely to be an upset in your circadian rhythms, there are various hormonal cycles that govern our daily operation, morning anxiety is very common and usually starts with a circadian upset, but then can continue as a pattern of behaviour, the first thing is to get your sleep cycles back in tune.

With regards to hormones 3 major players, melatonin your sleep hormone starts to rise about 9pm and makes you sleepy and then it peaks about 4am and starts to fall, cortisol your stress hormone starts to rise from about midnight and peaks between 6-8am, this is your wake up kick start and then it falls throughout the day, there is also a release of thyroid hormones at about 3-4am causing a peak particularly in T3 levels.

In a normal situation the melatonin being high in the early morning hours 2-6am overides the effects of the elevated cortisol and T3 so you sleep through it, but if there is a circadian disturbance and these cycles are not aligned and the melatonin peak is delayed, then it is quite likely you may find yourself waking up startled at 3 am, then falling asleep again, but still waking up tired and sore, good sleep is crucial to the healing process, low vitamin D levels also play some role in disordered sleep patterns.

The major sleep disturbance issues in modern life are night time lighting and late night TV & computer use as these emanate predominantly blue light wavelengths sending our bodies the wrong message of it is still daytime, so the melatonin release is delayed. Evenings should be a quiet time, winding down with casual conversation, reading a book, some contemplation of the day, not the suspense, anticipation and excitement blaring out of the TV screen. Lighting should be in amber tones, like the old incandescent globes or candle light, anything in the soft amber hues. The switch nowdays to compact flouro’s and energy efficient lights will only agravate these problems as they all seem to come with the cold blue/grey tones.

Try to maintain regular sleep wake cycles, get up and go to sleep at the same times, go to bed early with a book and just wind down for an hour or so, then roll over and go to sleep, try some relaxing herbal teas like chamomile and if you are splitting your ATD dose, then taking one dose just before sleep will help to minimise the thyroid release hormones.

Have a bit of a search around on sleep disorders, correction and circadian rhythms, improving your sleep patterns can have a major effect on your well being.

[Harpy]

in reply to: Meds: once a day? #1179210

As already stated, because of the half life of the drug it is better to take it in two and even better 3 evenly split doses.

The only reason doctors say to take it once a day is because of concerns about compliance, i.e. patients are incompetant and will forget to take it if it is split as a multiple dose per day.

Incidentally in all the reviews I have read this same compliance issue is always used as a point of reasoning against ATD’s in the treatment of thyroid disease, that patients are basically incompetant, personally I think more patients need to stand up, show their competance and hold their doctors to account for not being up to speed on current medical research in the treatment of their condition.

It’s not good enough for them to simply base their treatment on what they were taught 20, 30 or even 40 years ago.

[Harpy]

in reply to: Vitamin D and remission rates #1178924

Definately thinc you should consult with doc regarding vitamin D levels, you can get liquid form with a graduated syringe from pharmacy, but I think it is with prescription.

Regarding sun exposure, only requires a short amount of time if you show a fair bit of flesh, generally middle of the day is best as that is when UVB is available and it is the one that produces Vitamin D.

Sun exposure is far better than supplimentation, but if levels are very low then both might be the go.

Talk to your doctor’s, they may have some other ideas.

IMO we have probably taken “Sun Protection” a little too far, it wouldn’t be the first time we got it wrong as a society through a knee jerk reaction.

I also hang around the MS boards, have a few MS friends, the whole Sun/Vitamin D thing is quite significant there, as there is a strong corrolation between latitude and incidence of MS, they also generally have heat intolerance, general reports are although they may be a bit uncomfortable during the exposure, they do feel better in the long run and their sun tolerance improves, but that’s just what I’ve read in discussions.

[Author]

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