[Harpy]

in reply to: Newly diagnosed and only the internet for information #1064495

Welcome to the club Stephster
I am here by proxy, my partner is the patient.
You seem to have taken a fairly level head in the process and by what you have written it seems you may not have the brain fog issues as bad as some have had, which makes it very difficult to understand things and almost impossible to make informed decisions, so congrat’s on that side.
My partner also started the same way as you, her levels were about 10 times normal range.
The protocol in Australia is similar to Europe where 18 – 24 months on ATD medication is allowed for remission, my partner is at 3.5yrs now with positive signs of an increase in TSH levels. She is working with both the Endochronologist and a Naturopath and gets blood tests regularly to check for blood and liver issues where ATD’s may cause side effects, all her bloods have improved over the period, so far so good.
It took a few months to get her outward symptoms under control and her heart rate and other internal symptoms were much better after about 12 months, her physical damage such as skin and hair issues has been gradually getting better and now she is at the stage where everything is normal and she looks and feels better than she has for many years, just waiting for the TSH to continue upward, which is a sign of the body thyroid regulation system restarting, so she can start weaning of the ATD’s. She has been on PTU (50mg/tab) and the first 2 years her levels were jumping around as was her medication between 3-5 tabs, in the last 12 months she has gradually reduced to 3 tabs in March, and her levels are behaving in a predictable way, her most recent tests in july showed a drop in both T4 & T3 levels.
As for your question on coffee, everything you can do for your body will help you heal, so healthy nutritious diet and mild exercise, you can go a bit harder once your hormone levels get into the normal range, but stress will work against your healing process, so if giving up coffee alltogether will make you irritable & stressed then maybe just cut back on coffee.
I like the 80:20 rule, you will get 80% of the way with 20% of the effort, but it will take 80% of the effort to get the last 20%.
The only things I would avoid (my opinion) are Soy products, Trans Fats, take aways & highly processed foodstuffs, oh and also be aware of excessive iodine, ie use sea salt rather than iodised salt.
Good luck with your journey.

[Harpy]

in reply to: ????????????????? so many questions. #1064513

X2 everything that Kimberly said.
You will need to make some choices, it sounds like your life was pretty full before your diagnosis with Graves disease and it doesn’t take a genious to work out now it is more than full, so something has to give.
Your first priority has to be your health as everything else will fall by the wayside if you don’t put yourself first.
The medication will get your thyroid hormones back down to a normal level.
A healthy diet will allow your body to restock nutrients that have most likely been depleted by the hyperthyroid state.
Exercise is important but not extreme exertion as this will further deplete your body of essential nutrients.
Minimise any stress impact, obviously you will have a certain amount of stress through your study, look outside of that are there any other things that may be causing you stress, remember every demand you put on yourself will be a stress factor.
Rest is important as well, take time out for yourself doing non stressful things that you enjoy doing.
Your memory will improve as you start to heal and replenish nutrients.
Also have a read of the post: Late teen with hyperthyroidgraves, by Samdrums80
recently posted and not much older than yourself, just a reminder that your not alone in this, even in your own age group.

[Harpy]

in reply to: Late teen with hyperthyroidgraves #1064535

Oh I forgot the goitrogenic foods
Mainly the cabbage family, cabbage, broccoli, cauliflower, chinese cabbage, spinach too I think, they have a very mild suppressive effect on the thyroid action, so may assist in reducing the hyperthyroid state, they should be eaten as raw as possible, just remember the effect is very mild and will not be a substitute for medication.
Lemon balm can be taken as a tea or thrown in with salads for a light lemon flavour it is a relaxant and mild goitrogen also.
There are other herbs that can also assist, but should only be used under advice from a qualified person.
Anyway keep researching and take care of yourself, you will get there, it will just take a bit of time and commitment.

[Harpy]

in reply to: Late teen with hyperthyroidgraves #1064534

Everyone will have slightly different dietry needs as we are all slightly different.
Some general rules.
Stay away from highly processed foods and take away.
Avoid high iodine content foods like kelp, seaweeds etc, like sushi wraps and be wary of shell fish as they may have metal contaminants, personally I would also avoid soy all together except in the fermented state if you must and Trans fats are pure evil.
Minimise gluten & yeast intake and also reduce dairy (cows milk), hard cheeses are better than soft, try goats milk if you can source it, it’s much more easily digestable (20-30min compared to 2-3 hours for cows milk) and the taste difference is minimal, most people wouldn’t even notice it if they weren’t told, personally I find it has a much lighter smoother taste.
Eat fresh whole foods as much as possible that have had minimal processing and if you can get organic or even locally grown food the nutrition value will most likely be a lot higher than food that has been grown in large monoculture farms that use large quantities of fertalizers, pesticides & herbacides to compensate for poor soil quality lacking in trace elements.
Eat a wide range of fruit and veg, you really can’t have too much of these, lots of nuts & seeds (peanuts are not nuts they are legumes), healthy meats low saturated fats, mix it up though get get chicken, pork, beef, fish and other animal protein sources in the mix, cereals should be wholegrain as much as possible.
As for supplements you will need to determine what your needs are as best as you can with appropriate blood testing and if possible engage a Naturopath who has had experience with Hypothyroid issues to work with. I’d suggest fish oil as a definate as most people do not get enough Omega 3’s just make sure it’s ultra clean and has been tested for metal contaminants.
There’s so much more, but that’s a start, just remember don’t stress if you can’t achieve everything at once, it’s better to get half way without stress than all the way totally stressed out. Stress will rapidly negate any positive changes you make, so don’t whip yourself, do the best you can and take one step at a time.
This is all to support the medication and healing process and this is a long race, so pace yourself, as long as you are moving forward you are moving forward, sometimes they will be big steps, sometimes tiny, just remember to heal fully, your body, mind & soul must be number 1 priority.

[Harpy]

in reply to: Late teen with hyperthyroidgraves #1064526

I don’t know where you are with diet etc., but one of the major things you can do to assist any treatment process is to get onto a healthy diet, light exercise & take some actions on stress management techniques irrespective of the treatment program that you are on.

[Harpy]

in reply to: newbie just been diagnosed #1064541

Sooty
In addition to what Bobbi has mentioned above treatment will definately help your body to begin healing, but I’d just like to add nutrition & stress management play a big part in the healing process.
As well as working with your doctor/endochronologist, if you can afford it it would be worthwhile tracking down a Naturopath/nutritionist who has had experience dealing with CFS and/or Graves and other Thyroid disorders. If you have had the disorder for quite a while your body is probably lacking in a variety of essential elements, I’m sure you probably have a long list of test results and you will need all the information you can get to determine what you need to help you heal.
My partner has had graves for 3.5 years and in addition to the antithyroid medication (PTU) during that period, in the last 6 months she has made major changes to her lifestyle & diet and a supplement program put together with the aid of a naturopath and is taking a range of vitamins, essential elements, bone matrix support, iron and a variety of others, for the muscle fatigue & brain fog she has also been taking 1/g day Acetyl L Carnitine & 100mg/ day of Co Enzyme Q10 and has had major improvements in the 6 months, nothing instant just slow such that you don’t realise anything has changed until you think about the last time you noticed a particular pain or symptom. She was already on the path to healing before she started on the nutritional/lifestyle program, but feels she would have been further down the path if she had made these changes sooner.
But as I said before any Treatment plan needs to be tailored to your current body situation by someone with appropriate knowledge.

[Harpy]

in reply to: Heart #1064607

When my partner was diagnosed her heart rate was over 90 consistantly, don’t really know how high it got, gradually over 12-18 months it dropped down into 70’s, and in the last 6 months (3.5yrs on ATD’s) her resting heart rate has dropped from the mid 60’s to the mid 50’s.
She is 41 and average fitness and slightly overweight, although her weight has dropped a little bit in the last 6 months, but she has noticed a more significant change in body shape by how her clothes sit on her, like the weight has distributed itself in more appropriate places. We think this may be due to her dietry changes, not counting calories or eating less, just eating more wholesome foods.

[Harpy]

in reply to: Tired of being tired #1064830

As above
Muscle movement is very important, not strenuous, just movement. In addition to the comedies/laughing and rocking, regular walking on level ground, even just around the house from room to room.
The contraction of muscles helps push blood and lymph fluid back up to the heart and reduce the amount of work that the heart has to do, just no strain and not enough to push the heart rate and breathing too hard.
All over stretching as well, think slow gentle movement, but there needs to be movement to help the muscles to heal.
As a side point I just read that sometimes the throat muscles may also get fatigued by graves causing the sore throat and hoarseness, Think it’s also been mentioned elswhere.

[Harpy]

in reply to: Ques on dosing #1064663

My partners endo said an even spread through the 24 hour period and make sure, particularly in early stages of treatment, that one dose is closer to bed time so that you don’t start to "rev up" during the night and hence lose sleep as rest is very important in the recovery process.

[Harpy]

in reply to: New to site and have Question #1064700

Sorry about that Typo
Thank you Ski for your vigilance, yes I meant to write Hyperthyroid

[Harpy]

in reply to: New to site and have Question #1064698

Just to add to Bobbi’s comment
I have read that if it is not completely destroyed, in some rare cases it can re grow back enough to produce enough hormone to create a Hypothyroid situation.
Back to basics, get hormone test levels and if that is the case ie high hormones (T4&T3) hopefully by reducing your dose of synthyroid you can get back on track.

[Harpy]

in reply to: Side effects of coming off Methimazole #1064686

Is your TSH in the right range?
My partners Endo will not drop the ATD meds(ptu) all together until her TSH shows a significant move into its appropriate range, even though her hormone(T4,T3) levels are in the optimal range.
This would be an indication that the pituatory gland has restarted normal monitoring functions of thyroid hormone levels.
One of the consequences of Graves/Hyper is the high hormone levels sometimes disable the pituatory gland and it may take a significant time in the right hormone range before it resumes it’s job.
This is one(there are others) reasons many people go hyper again after dropping the ATD meds.

[Harpy]

in reply to: First Appt with Endo! #1064736

Thompson91
Assume your hormone levels were high as you were prescribed ATD’s.
I don’t know what the protocol is there but here they generally start you of with both ATD’s & Beta blockers, the ATD’s to reduce your thyroids production of the hormones and the beta blockers to reduce the hormone effect on the body until the excess is flushed out of your system and then the Beta blockers are stopped and just the ATD treatment continues.
I can’t comment on the RAI or Surgery as my partner, who is the patient (thread below "Newbie to site – Graves 3.5yrs") has elected to continue treatment with ATD’s and she has recently shown signs of increasing TSH which is the first indication of potential remission, so still going at this stage. She gets full bloods tested regularly to monitor hormone levels and potential side effects of ATD’s Liver failure & Blood Cancer, to date no indications of a problem.
Pros & cons with any of the options do your research and make a decision that you are comfortable with, It’s hard to make an informed decision while you’re body and mind is racing so I would advise you go with the ATD’s for a while to get your levels down and give your self time to think about it how you ultimately want to deal with this disease.

[Harpy]

in reply to: need web direction for imformation on how the autoimmune #1064728

Cynthia,
You missed the title, "Newbie to Site – Graves 3.5 years"
Look down 9 or 10 posts.
Check your spelling – L Carnitine
Can’t look at things now but will do a bit of a search and post a link for you if I think it is appropriate.
Sounds like you’re running 100mph, take some time to breath.
Anyway I’ll just go and refresh myself with your story.

[Harpy]

in reply to: Newbie to Site – Graves 3.5 Years #1064809

Cynthia
Just posting a clarification on dose levels, copied from this link

http://keithconnectsthedots.com/2007/12 … sease.aspx

To date, clinical trials have shown that doses of 2,000-4,000 mg/day of L-carnitine are helpful in individuals who suffer from hyperthyroidism. Future studies may uncover similar benefits of other carnitine formulations such as acetyl-L-carnitine, acetyl-L-carnitine arginate, and propionyl-L-carnitine, along with the doses needed to match the efficacy provided by 2,000-4,000 mg L-carnitine.
Until scientists reveal the most effective dosages of each carnitine formulation, the following chart may provide preliminary guidance
L-carnitine:2,000-4,000 mg/day
Acetyl-L-carnitine: 800-2,000 mg/day
Acetyl-L-carnitine arginate: 600-1,000 mg/day
Propionyl-L-carnitine: 600-2,000 mg/day

The link is a Magazine articles and has about 15 sources, mainly studies listed at the end, you may be able to track down the studies and read the detail.
And I can not stress enough the need for people to do lots of research, take care and due diligence, keep their doctor informed of any changes they make in their life, make informed decisions and take personal responsibility for the decisions they make.
Everyones case is slightly different and you need to tailor a solution that you are comfortable with.

[Author]

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