[Harpy]

in reply to: Hoping this isn’t too personal #1178146

My partner was all over the shop,
she went through a couple of cycles,
Early in the piece they were quite short 2-3 weeks or skipped altogether 6-7 weeks, then gradually they got longer, when her hormones normalised they were stock std 4 weeks for a while then they whacked out again and restabilised a few times and sinch her TSH returned they have stabilised and been sitting stable at 4 weeks +/- a few days.
During the same timeframe her PMS and flow was also much the same varying from a few spots to an all out massacre, but these too have normalised.
So there is some hormonal connections IMO, but it’s not just in the thyroid hormones, there are bigger things at work in the overall GD process.

[Harpy]

in reply to: Uncaring husband(have to share) #1178103

I have a superiority complex,
But like any disease, I was fortunate enough to recognise it quite a few years ago, I am not cured yet, but am still working on becoming a better person.

I always thought my way was the best way, and it may well be for me, but it is not necesarily the best for everyone, it took me years to validate my partner and understand that things that may seem totally irrational to me may be what she needs and then that then led me to actually communicating better with her of what my needs were and recognising what hers were and meeting somewhere in the middle, as said still working on it.

Amy had some good points and to add to those,
If you can find yourself in a calm strong place to innitiate a discussion, these things will take quite a while, so do not dump everything at once, keep it in small bites, do not attack or belittle your partner it will be hard enough as it is, as an example of terms say:

“When you do/say this (his actions or words) it makes me feel like this(your feelings/reactions)”

This statement does not blame him it just states how it makes you feel, it may sound a bit corny but it does work.

Do not be afraid to call time out, if he gets into a rant, let him go and then when he’s finished just say you are not in a position to carry the conversation at that point and try to schedule another discussion later, next day, next week whatever, it may seem a bit mechanical, but better that then getting into an emotional tirade where things may be said that can’t be retracted, keep it in small bites and remember it is ok to maintain a normal relationship between your discussions.

If he is a good man, then he is likely more confused than anything, but does not have the tools to express or communicate this, I you feel the relationship is worth fighting for, then work on it, but just little steps, the rewards can far outweigh the effort in the long run.

That’s a bit of my experience, hope you may find some bit’s you can use.

[Harpy]

in reply to: Goodbye and so much good luck to all. #1178126

I have to agree somewhat to the above post, I tried to log in this morning to no avail just to reply to the first comment, didn’t expect to see more of the same.
Not sure why I couldn’t log in as I had no trouble logging in to other sites, anyway.

brondack wrote:

Don’t let the door slam you when you leave ….On second thought, I hope it knocks you over.

Totally inappropriate and uncalled for, kicking someone when they’re down is just not on.

Kimberly wrote:

We now return to our regularly scheduled programming of “encouraging, educating, and empowering…”

That is a bit snide, considering the entire issue revolved around the censoring of information the catchphrase needs to be edited to read something like:

Quote:

“encouraging, educating, and empowering…within the restrictions set by the board”

I do understand that there are limitations because of the structure of this forum, but it needs to be recognised that this also introduces a certain degree of frustration for some individuals, I try to stay within the guidelines, but it’s not always that easy and I do not have GD so do not have to deal with heightened sensitivities, so maybe a bit more tolerance please.

[Harpy]

in reply to: Acetyl L Carnitine for GD Symptom support. #1178046

mslux wrote:

Hi Harpy,

Thanks for the link. I’ll follow up on it and do some research. I’m being treated with the ATD Carbimazole with a hope for remission, similar to your partner’s treatment approach. Depending on the severity of the condition and how it is affecting the patient they are very open to this approach here in Europe.

I have to be careful as my liver has been slightly compromised by the Graves but I have also read about the data supporting the use of selenium for eye health. What else have you both found to be of particular use?

I have extreme fatigue, brain fog and a removed kind of feeling at times that could best be described as slightly ‘numb’. It’s not as bad as some people’s unwellness but it is concerning. Any info you feel might help, or studies done, I’d love to have a look at.

Thanking you,

Ms Lux.

Will have a chat to my partner and get back to you.

[Harpy]

in reply to: Acetyl L Carnitine for GD Symptom support. #1178045

Stymie wrote:

Hi

Thanks for posting this great info!

Would this be beneficial for people who still have a functioning thyroid only? Or would it help people who have have a TT or RAI?

Thank you!

D

Carnitine is used fairly widely in a variety of areas, I do know of non thyroid individuals that have used it, some did gain benefits, some didn’t notice any changes.
I used it for a few months just to see if I’d notice anything, no impact on me one way or another, but I don’t have a condition, most of the data suggests minimal risks as it is part of normal body metabolism so I imagine it would be ok to try although you should do your own research and talk to your doctor first.

[Harpy]

in reply to: Labs #1178054

As I am reading your post, looks like
Peroxidase ab’s are ok value of 10 and range of less than 35

Thyrotropin AB’s still a bit high value of 38 and range should be less than 16

Thyrotropin receptor AB’s
aka TSI, TSHr AB’s, TRab’s
There is a number of names they go under, so your test is for TSI, no need for another test.

[Harpy]

in reply to: Few things to help you feel better. #1175507

Regarding doctors appointments, prepare your self with all your records and approach the process professionally, try to place yourself in the mindset of a project management team, your health is the project and you are the project manager and your doctor is a team member, so you will be looking to establish milestones and a set of actions to achieve your goals.
If possible avoid taking children to appointments as you will need to focus all your attention in the meeting.
In addition to that if you can get someone else to come to appointments with you, preferably someone that may have some knowledge of your background as it can be difficult to absorb all the info that transpires. There is also strategy here, having a 2IC in the meeting will help shift the power balance in your favour, with a one on one situation the medical practitioner will automatically assume authority, but if you have two on one, the power balance will shift more in your favour, this will minimise the tendancy to be bullied into rash decisions.

Just to reitterate there are four tests required for GD thyroid management
Free T3
Free T4
TSH
TSH receptor antibodies

The first two are required by any doctor to make an informed decision regarding ATD dosing, T4 alone is not enough. It is likely that TSH will be supressed for a while but the test should be done regularly to see when it returns and so that dosing and testing protocols can be adjusted accordingly.
TSH receptor antibodies should also be tested routinely, to track any patterns that may emerge, in some cases they will rise and fall, in others there will be a continous falling direction, this information will help determine what direction should be taken when approaching remission.

Regarding the Euthyroid question and symptoms of GD, this is an issue of disease definition, medicine generally doesn’t like to recognise the body as a whole but instead as distinctly seperate systems, so therefore if your thyroid numbers are in range then any other symptoms must be unrelated to GD.
The real world is not that simple, IMO GD is a disease of the body and the thyroid is just one of the organs impacted, just because thyroid levels are corrected does not mean the rest of the body is healed at that point.
One thing to remember with medical testing is we only see the results of what we test for, there are still things going on in our body that we are unaware of, new hormones and metabolic processes are being discovered constantly. So we need to allow for the possibility that there may be other associated factors at play with lingering symptoms that we may not be aware of yet.

As for other testing, it would also be worth checking blood glucose levels as there is a strong corrolation between high blood sugar and autoimmune thyroid disease. There is more and more studies that are suggesting that dysfunction of Glucose metabolism is at the base of a variety of chronic diseases, not just diabetes.

[Harpy]

in reply to: Auto immune trigger – questions #1178030

There are multiple triggers for GD to manifest in an individual, food, stress, toxins etc, I don’t think there is one particular thing, I think it is a combined assult on the body which finally causes a disease to manifest, and most chronic diseases would work this way in my eyes.
So therefore if you proceed to improve all your health markers including diet, stress, weight management, physical fitness, lifestyle etc, this gives your body the best support in the healing process.

The many individuals have positive TSH antibodies, but they are in range and never go out of control and result in GD, so there is much more to it than just the antibodies.

We believed from the start that we could reverse my partners GD, and although it’s been a long haul, in year 7 now, her labs are all normal, she feels great, is weaning down PTU dose and looking forward to remission at the end of the year.

[Harpy]

in reply to: TED & Block and Replace Therapy #1177268

That’s part of the problem,
Most doc’s really take little interest in the detail of managing thyroid disease, one point in example is the testing for TRab’s, most believe it is only relevant in diagnosis, yet there are studies that show quite clearly that the pattern of behaviour of TRab’s during the course of treatment is a clear indicator of remission success or failure. You still read of frustrated patients dealing with doctors who think just TSH and sometimes FT4 testing is enough to determine thyroid health, when all the evidence suggests at a minimum 4 tests are required TSH, FT4, FT3 & TRab’s.

Early B&R did use very high doses, but this is not required, I think there is very much a battle mentality in trying to “crush the enemy”, but many studies have shown that it is more a case of just managing thyroid levels, Low doses of ATD’s are adequate and it is moreso the duration of treatment that improves the likelihood of a successful outcome.
Some are using a modified version termed Add Back Therapy, where if thyroid levels are normalised, but TSH is still absent &/or antibodies are still high, rather than withdrawing ATD’s because thyroid hormones fall too much, low dose ATD is maintained with just enough thyroxine to bump up hormone levels.
But alas this actually takes a bit of dedication and monitoring and the system really just wants the patient in and out.

In the case of a B&R treatment in the abscence of thyroid, most doc’s would likely question why use ATD’s if there is no thyroid, but it appears they may be active not elswhere in the body, a low dose of ATD’s would likely be sufficient, but there has not been any studies done specifically to see if there is a benefit.

[Harpy]

in reply to: What diet changes did you make after Hyper/Graves’ Diagnoses? #1177185

Our approach was to look in providing the most nutritious diet we could and eliminating as many allergenic/inflamatory dietary constituents.
This resulted in basically a Paleo style diet comprised of whole fruit, Veg, some nuts and variety of meats, we eliminated grains, soy, and limited legumes.
Reduced consumption of Omega 6 vegetable oils and increased intake of Omega 3 EPA & DHA.
We consume very little processed or packaged foods as there are too many additives and we use very little processed sugar, we prefer to have all our macro and micro nutrients in the form of whole food.

In addition we also did a bit of rationalisation of excessive household cleaners and personal care products as many of these contain powerful chemicals, even the so called “natural” ones.

We also took active measures in lifestyle behaviours and stress reduction, this is an understated area in regards to overall health.

Basically tried as much as possible to reduce negative impacts and increase positive impacts.

Did it help get us to this point?, we believe it did.

[Harpy]

in reply to: Diet & Graves Disease #1175389

Kimberly wrote:

@Harpy – It looks like that piece was drawn from credible sources…although it’s important to have a little healthy skepticism when it’s clear that the maker is trying to sell testing services to practitioners! I hear a lot of anecdotal stories about gluten and Graves’, although I haven’t seen any research reports specifically linking the two…this would definitely be a good area for further research! Love your comments on the 80/20 rule and how “absolute perfection” can serve to *increase* stress in your life. So true!

I agree totally with the scepticism, but there have been quite a few studies done in the last 10 years which have found clear associations between Gluten and a variety of psychological conditions like anxiety, depression and schizophrenic symptoms, when a Gluten Free diet is adopted the symptoms disappear, though I didn’t want to bore you with links to corroborating studies. This is not the same in all cases though so it just tends to confirm that chronic human disease conditions do not always conform to the simple cause:effect hypothesis.
There are very few instances in the natural world where simple cause:effect happens, from the culmination of storm fronts down to bacterial infections, change one factor in the cascade and it becomes a non event, just like pulling one domino out of the line, the cascade stops at the gap.
In my mind while research is focussed on a singular cause there will always be confounding factors to rule out the studied cause, somehow we need to look at chronic disease conditions with a broader view, I feel “the perfect storm” would be an appropriatet description.

There is an alternative Hypothesis being put forward now in relation to the multi autoimmune disease situation, the current hypothesis being; because you have one you are more succeptable to get another ie the Hashi’s & Coeliac connection, some are now suggesting it may actually be due to both stemming from the same source, rather than one following the other. It is a fine distinction, whether one follows the other or both are running side by side, but it is a significant difference in how research could be targeted better.

As for the 80:20 rule, I first came across that in business studies many years ago, but since I have found it applies well in the natural world as well as our lives. Just think of domestic chores you can get 80% of the effect for 2 hours effort or you can spend the whole day breaking your back for not much better. By the way, yes I do have hands on experience too, but don’t get in my way because when I’m in flight it’s like “Tornado Alley”, I hate domestics, so it’s like a military operation, take no prisoners, get in, mission accomplished, get out and relax.

[Harpy]

in reply to: Diet & Graves Disease #1175388

HelenYH wrote:

Harpy wrote:

We looked at increasing positive influences and reducing negative influences.

So along with the PTU, we researched diet, toxins, exercise, lifestyle, stress management (meditation, yoga etc), behavioural patterns (self sabotage etc.), sun & Vitamin D, and anything else that we could think of that could be having an impact one way or the other. With all of that we always used a degree of moderation as per the 80:20 rule, which says 20% of the effort gets you 80% of the way and most of the time the last 20% is not worth the 80% of the effort. If absolute perfection is going to increase stress & trauma in your life, it probably isn’t worth the effort and is going to negate any benefits.

Did your partner also go on a gluten-free diet? I did not and will probably not even though I try to minimize gluten and dairy in my diet.

Not initially, our diet improved progressively over the last six years and has been gluten and dairy free for about 2 years, apart from the odd indiscretion. The Paleo style diet we follow is gluten free by default as all Grains, Dairy, Soy and processed foods are cut out.

I went along for the ride, not really expecting any changes as i was relatively healthy, but did notice quite a few symptoms and behaviours change in myself and this then inspired me to dig a bit deeper and look at the whole Gluten and autoimmune thing a bit more. The way I see autoimmune and other chronic diseases is that they are multifactorial, there is no singular cause, but instead there are multiple factors which contribute to stressing the body, including diet, environmental toxins, psychological & emotional stress, minor infections etc. These things are usually refered to as triggers, but I think “the straw that broke the camels back” is a more apt description, there was much more damage done before the final straw was added.

In no way do I suggest one should avoid conventional treatment, but instead we thought of it as a multipronged approach using PTU to manage the thyroid hormones and improving all other factors we could think of to give my partners body the best chance at healing. Some people see the dietary changes as unnecesary denial, each to their own, personally we don’t, we have adopted this as what we feel is a healthier way of living, so why would we go back to what we were doing in the past.

[Harpy]

in reply to: Diet & Graves Disease #1175380

As there was som Gluten discussion earlier, just thought I’d post this link, it’s not specifically thyroid, it is a current Gluten Sensitivity (GS) testing protocol from Cyrexlabs directed at clinicians, the preamble though gives a good outline at how broad the impact of Gluten is to health and it goes much wider than just Coeliac Disease (CD), and I dare say it will get even bigger as time passes.

https://www.cyrexlabs.com/Portals/0/Docs/ClinicalApplications/ClinicalAppArray3.pdf

From other things I have read, particularly for Coeliac’s, but likely for anyone whom has a Gluten sensitivity a Gluten free (GF) diet may not be enough to heal the damage, the primary reason being that the GF diet has been comercialised and the poor quality of processed food that doesn’t contain gluten is just packaged and labled GF.

The acronym SAD is becoming more prevalant in describing the Standard American Diet, mind you it applies just as well here in Australia and SAD is an appropriate judgement of it’s nutritional quality. In the past if you were diagnosed with CD or GS it was tough, there was nothing on supermarket shelves that was GF, this meant by default you were forced to go back to basics and prepare meals from raw ingredients, meat, veg, fruit, etc. and hence the diet was healthier irrespective of the gluten content, now with all the choice on the shelves you can also have GF SAD and not feel left out.

[Harpy]

in reply to: Diet & Graves Disease #1175379

From what I have read there is a genetic predisposition but this does not always result in GD and it is believed that there is a significant environmental factor or factors that triggers the autoimmune response and there are a multitude of things that have been proposed as triggers.

As the Medical proffession could give no guidance to triggers and aggravations, we did our own research from articles, blogs, forums, scientific papers and made the most informed decisions we could, there is a lot of rubbish out there, but there is also a lot of useful information, but many hours must be spent wading through it.

We took the approach of “do no harm” so everything was run through the worst outcome considerations with regards to vitamins, supplements etc.

We looked at increasing positive influences and reducing negative influences.

So along with the PTU, we researched diet, toxins, exercise, lifestyle, stress management (meditation, yoga etc), behavioural patterns (self sabotage etc.), sun & Vitamin D, and anything else that we could think of that could be having an impact one way or the other. With all of that we always used a degree of moderation as per the 80:20 rule, which says 20% of the effort gets you 80% of the way and most of the time the last 20% is not worth the 80% of the effort. If absolute perfection is going to increase stress & trauma in your life, it probably isn’t worth the effort and is going to negate any benefits.

She now has all levels good, full thyroid function, antibodies well below minimum and has started weaning down the PTU to attempt remission later this year, although it’s been a long slog over the last 6 years, we both believe that she would not be where she is if she hadn’t made those changes in her life.

My partner decided this path for herself, I just supported her in the process, many people don’t want to make any changes in their lives, that’s their choice.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170890

Been a while since I was here,
We’ve had a test in Sept and another in Dec and numbers still on track,
Here are my partners last few years of results, for anyone interested in the progress report, FT4, FT3 & TSH still holding in range and the antibodies have fallen well into range as well, everyone happy with numbers and we are now starting the PTU weaning process, which will take place over the next 12 months.

Prior to the first listed result below PTU dose varied from 150-250mg/day,
best TSH in the past was 0.12, and that was only when T3 & T4 were driven to the bottom of the range, usually it hovered between 0.01 to 0.03 which is in the realm of testing error tolerance.

PTU dosage at 100mg/day

31/05/11
FT4 – 15.1 (9-20)
FT3 – 4.5 (2.6-5.7)
TSH – <0.03 (0.4-4.0)

05/01/12
FT4 – 13.1 (9-20)
FT3 – 4.2 (2.6-5.7)
TSH – 1.23 (0.4-4.0)

10/01/12
PTU reduced to 50mg/day

15/03/12
FT4 – 15.9 (9-20)
FT3 – 4.4 (2.6-5.7)
TSH – 0.61 (0.4-4.0)
TRab’s – 1.6 (<1.5)

22/06/12
FT4 – 14.4 (9-20)
FT3 – 3.6 (2.6-5.7)
TSH – 1.30 (0.4-4.0)

19/09/12
FT4 – 14.6 (9-20)
FT3 – 4.1 (2.6-5.7)
TSH – 0.97 (0.4-4.0)

27/12/12
FT4 – 14.2 (9-20)
FT3 – 4.7 (2.6-5.7)
TSH – 1.39 (0.4-4.0)
TRab’s – 0.9 (<1.5)

Regarding symptoms, she feels great, no fatigue, head clear etc., basically no GD symptoms at all. She still records body temp & heart rate morning & evening and makes journal notes on any subtle perceptions of changes, so she knows her body intimately Still continuing with the supplement program, dietary improvements, stress management, exercise & self awarness (meditation, yoga etc.).

We are due for the next test in April, 3 monthly and she will wean fully off the PTU around the end of the year, if all continues smoothly we will then begin to wean down the supplement program.

As would be expected she is getting a bit excited about getting to the end of this process, in my usual style, I did remind her not to get attached to a particular date or time, as that may well create expectations that may blur the subtle expressions of her bodies health signals, better to just continue without a fixed date and she will know the time has come to stop the PTU altogether.

She is going down to 3/4 (37mg) a tab/day, then 1/2, then 1/4 etc and when she gets to the time when she feels trying to cut the doses up small enough that it is pointless, she will know she is done with the PTU.

[Author]

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