[Harpy]

in reply to: Introduction and frustration #1172829

First thing,
You’re not a head case, nut case or basket case, you are just another individual trying to cope with one of the many variations of GD manifestation.
Your test results are very similar to the way my partners were in the early stages and the endo also sent her up & down adjusting meds trying to get her levels right. If FT3 was right then FT4 would be too low & if FT4 was right then FT3 would be too high and it took a full 2 years for both to sit in a reasonable place in their respective ranges. I have also seen the same situation with other individuals, looking back at my partners situation the best option may have been to get the FT4 into the lower part of the range and allow the FT3 to sit where it was provided she did not have Hyper systems, or using Add Back Therapy, which I was unaware of at the time, this is where meds are raised to the point where FT3 sits at the right level and a small amount of Thyroid hormone is also taken to maintain an appropriate FT4 level. Either way for our situation my partner came through that stage without too many negative symptoms affecting her.
When I eventually charted my partners test results a definate trend emerged with the relationship between FT4 & FT3 levels gradually increasing until both FT4 & FT3 were sitting at the middle of their respective ranges (3 year mark), this was most evident when I plotted the FT4:FT3 ratio, then over the next 2 years her body was managing levels better and over that time her medication was gradually reduced, in January this year her TSH reappeared which had been nonexistant for the last 5 years and she’s looking on track to go for remission next year.

I am still searching around to try to find out why this situation of high FT3 in relation to FT4 occurs, as far as I can see there are two possible options:
1/ The thyroid is releasing excessive quantities of FT3 because of the antibody stimulation of the TSH receptors or
2/ The antibodies are stimulating the TSH receptors in the Liver and elsewhere in the body causing an excessive increase in the conversion rate of FT4 to FT3

Regarding the RA, have you thought about looking at dietary measures, there appears to be some link between Wheat Gluten (Gliadin) sensitivity in a number of autoimmune diseases including RA, the association does not occur for all individuals but the corrolation is much greater than random population expression of anti Gliadin andibodies. One study link below:
http://www.ncbi.nlm.nih.gov/pubmed/8575138
I found a while back there was a link in some cases between Psoriasis (my disease) and Gluten so I gave it a try, been Gluten free for 2 months and my condition seems to be improving and also found other aspects of my physical health improving as well, may be worth a try if you are not already gluten free.

Hope you get some relief from your symptoms soon, when my partner was full on Hyper she was like a “cut cat on fire” snarling, then appologising and all the time radiating heat like a furnace.

[Harpy]

in reply to: 2nd remission #1172817

Not sure what actual true numbers are as there are so many different compounding factors with GD.
My partner has gone 5 years on PTU treatment and during that time she has been in good health symptomatically speaking except that her TSH remained suppressed, this has finally shifted and all her numbers have been good for 6 months now, we will look at weaning off the PTU at the end of the year and go for remission. I have no doubt in my mind that if she were to have a relapse that she would take the same path again.
Our view is that this is not a purely genetically determined condition & that diet, lifestyle & environment play a significant role in the manifestation of GD, so with that in mind we also believe there is a significant amount one can do to support the bodies healing process along with ATD treatment.
I have read about many individuals achieving remission with ATD’s sometimes having to go at it multiple times like James, I have also read about individuals who couldn’t go down that path because of allergenic reactions, I have also read about individuals whom have had success with surgery or RAI and others whom never quite get right after Surgery & RAI and in some cases having the eye disease & other complications resurface after many years of stability even though the thyroid was removed or ablated.
So just like treatment with ATD’s the treatment by Surgery or RAI is no guarantee of lasting remission, it just eliminates the Hyperthyroid symptoms as there is no functioning thyroid, but one is just a succeptable to the other autoimmune manifestations.
So however you flip it, there is always some risk of recurrance in one form or another, so vigilance & routine testing will always be a part of remaining healthy. Just to balance that a bit so you don’t get the why me? victim thing going on, understand that the bulk of the population is siting on the verge of a health crisis only they just don’t know it, whether it be an autoimmune disease, heart disease, cancer, diabetes etc, etc.
We all need to be more proactive & conscious of our health.

[Harpy]

in reply to: Eye Symptoms #1172681

lkmanley wrote:

Thankyou for the information. I had not heard of myxedema. I will research this to see what all is involved….My eyes are not bulging as of right now-just had all the other symptoms and they have been coming and going. But I have since developed an old symptom: hands trembling and a new symptom that may or may not been related-severe memory loss. Don’t remember if this is a Graves Disease symptom or not. I will have to look back at all the symptoms and see.
Hope to see my Endo docter real soon and get my blood levels and eyes checked.
Thanks again..everyone has been so helpful.
lkmanley

Yes, trembling hands & brain fog (memory loss, slowness) are some of the symptoms of GD, it is definately a good idea to get tested ASAP, the sooner you catch it the quicker you will be able to stabilise it. Even if you hadn’t mentioned the other symptoms, the suspected TED would be enough for a former GD patient to get tested.
Make sure you also get tested for Thyroid Receptor Antibodies as well as the FT3, FT4 & TSH.
Not sure what your previous history has been, but often individuals will relapse if their initial treatment was very short and their levels stabilised quickly, it sometimes happens that FT3, FT4 & TSH all come good quite quickly, but the underlying antibodies are still present in higher levels and this often then results in a flare up down the track.
It is important to get antibody levels well within range before weaning off med’s and to have routine testing every 3 months for the first year or two if possible to ensure any fluctuations are picked up early, there are not many doctors who will accomodate this level of care unfortunately though.

[Harpy]

in reply to: TSH not Increasing #1171684

Regarding supressed TSH, my partner had low/no (<0.05) TSH for around 5 years before it finally kicked in, this is irrespective of the fact that her FT3 & FT4 stabilised within the 2 year mark while taking PTU, the last 3 tests show her TSH has been tracking normal for the last 6 months.
It is believed supressed TSH is caused primarily by TSH receptor antibody activity in the Pituitary gland, the antibodies simulate the effect that TSH would have making the Pituitary think TSH levels are high, hence it does not produce any.
Just like antibody activity in the thyroid runs seperately to the antibody activity in thyroid eye disease, likewise with the pituitary and elswhere in the body.
For some the TSH recovers quickly, indicating antibodies are clear of the Pituitary, for others it takes much longer.
There are TSH receptors throughout the body, not just in the thyroid, but it is not clear why antibodies are more active in some areas rather than others and it seems to differ with different individuals.

Carito71 wrote:

Hello everyone. I’m still learning so I don’t have any answers but I do have a question.

What happens then when the FT4 starts to get lower but the FT3 is still high? Do they keep you on Methimazole? I guess what I’m trying to figure out is, what would they treat you with if the FT4 gets to where it needs to be but the FT3 is still high? Is that possible? If continuing with Methimazole, wouldn’t one get too low on FT4? Is that they case where they would treat one with “block and replace” … I think that what I’ve read they call it.

Still learning. Please forgive me if my question doesn’t make sense.

VanlsleGal, I hope you find the answer to your question soon.

Caro

Your question does make sense.
In short, yes sort of,
Kimberly has mentioned the concept on another thread where medication dose is maintained and a small amount of thyroid hormone is prescribed just to keep T4 at normal levels. This situation of in range or low T4 and high T3 is quite common in early stages of GD treatment and the above approach may be particularly beneficial to help get stability as soon as possible. I’ve heard it described as “Add Back” treatment, rather than “Block & Replace” where Thyroid production is shut down entirely with anti thyroid medication, then a supplementary dose of hormone is given. Block & Replace was/is apparantly used quite successfully in Japan, but has not been used extensively elswhere.

[Harpy]

in reply to: Feeling hypo, want to reduce meds but endo doesn’t… #1172709

I’ll second Kimberly’s comments,
The concept she mentions is sometimes called “Add Back therapy”, and allows patients to maintain a consistant low dose of ATD’s while supplementing a small amount of thyroid hormone to keep hormone levels high enough to support normal metabolic rate.
The reason for this process is that some practitioners in the thyroid field believe that the ATD’s not only reduce hormone production, but also have a suppressive effect on antibody activity so by using ATD’s for a longer period will have a better chance to reduce antibodies to normal levels and increase probability for a lasting remission.
Have you had your Thyroid Receptor antibodies (aka TRAB’s, TSH Receptor AB’s) tested recently to determine if they are close to being in range, maybe ask your Endo about this as well?

[Harpy]

in reply to: Frustrated #1172770

I didn’t look all the way back through your history, but you are still, relatively speaking, in the early stages of treatment and hormone levels can fluctuate considerably depending on individuals.
When were you last tested, I assume your results must have been below range if you were told to reduce your dose?
Did you get FT3 tested as well? The reason is some doctors only go by FT4, but before levels stabilise the FT3 levels can be quite high even though FT4 may be in range and FT3 is the primary hormone in controlling metabolic rate. So there can be quite a balancing act in getting dosage right to get FT3 in range whilst not allowing FT4 to go too low.

I did also notice you are a Psoriasis sufferer, me too, recently I found some new information on Psoriasis, it seems it has just been added to the autoimmune family of diseases and there appears to be a link to Gluten sensitivity for some individuals. I searched around and found there are mixed reports, some individuals report major improvements in Psoriasis symptoms when they cut Gluten out of their diet, others don’t get the same results.
Two months ago we went to a Paleo diet, which is “Gluten free” by nature as all grain consumption is removed and my Psoriasis has improved by more than 50%, hands and elbows are virtually clear, just some pink skin now and knees much improved. I also had a number of other improvements in my body condition like body odour reduced markedly, night sweats gone and cold fingers & toes also gone. I can’t put it all down to Gluten, but the “night sweats” I am 99% sure are as everytime I eat at others houses and consume some wheat products (pasta, bread etc.), like clockwork that night about an hour or two after I fall asleep I soak the sheets. In the past I thought this was just my normal metabolism as it happened, more or less, every night, but it was only after I changed my diet and stopped having “night sweat” episodes that I realised it was not normal.
Don’t know if you may have a “Gluten sensitivity”, but if so it may also be aggravating some of your symptoms and it may be worth a try cutting out Gluten for a couple of months to see if it helps ease some of your symptoms.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170886

We just had another test in June and numbers still on track,
Here are my partners last 4 sets of results,
prior to this time 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)

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

She is continuing on PTU at 50mg/day split in 2 doses and has become quite good at picking up changes in her body and in the last 2 years she has initiated dose adjustments herself, informed the Endo and gained approval.
The Endo basically pushed for Surgery before the 2 year mark in treatment, but was respectful of my partners wishes to pursue remission on meds and complementary treatments, they “agreed to disagree”, once we got a positive result, 5 years on, the Endo gained more confidence in our process & is a bit more lenient with us as we have shown her our commitment & due diligence. The Endo considers 1tab (50mg) of PTU as a maintenence dose and would like to see a full 12 months of good results at this dosage, while we feel another reduction of PTU would be appropriate, so there is a bit of a balancing act between what we think and what the Endo thinks.

Regarding symptoms, currently she feels better than she ever has, no fatigue, head clearer than ever and she 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 Sept and then another in Dec when we will have antibodies levels checked as well and if these continue to show all normal then we will begin weaning the PTU down over 6 months and look at remission for June next year. After that we will begin the process of scaling down the supplement program over about 12 months so that she doesn’t need to drag around a bag of tablets everywhere she goes, but the diet & lifestyle changes are permanent, as we believe bad diet and lifestyle is what put her in such an unhealthy state for the Graves Disease to manifest.

[Harpy]

in reply to: Not Stabilizing on Tapazole #1172259

So sorry you haven’t been able to shake it, hope your numbers come down and stabilise quickly so you can move forward.
I scour the net looking at different individuals experiences so that we might get some insight into what the future may hold for my partner. Currently her thyroid hormones & TSH are all in normal range and antibody levels have also dropped right down, she is on the 50mg of ptu and we are starting to wean that down, and attempt remission in about 6-12 months, she was fortunate that her body took to the ptu quite well and has no negative indicators on WBC or liver enzymes.
Thanks for sharing your story.

[Harpy]

in reply to: Not Stabilizing on Tapazole #1172254

Can you elaborate a bit more on your history with GD, how long between incidents?
Have you made any changes in lifestyle, diet etc?

[Harpy]

in reply to: how long till brain is back? #1171997

Everyone responds a bit differently, but usually after a few months of stability with the thyroid hormone levels, the rest of the body begins to catch up and other symptoms like brain fog, mood swings, panic, muscle fatigue all begin to fade. Normality will return, it just takes a bit of time.

[Harpy]

in reply to: Remission on ATDs – now what????? #1169118

RebeccaJT
Do you have any recent test results of Thyroid Recepter Antibody levels?, sounds like they would still be a bit high if you are still feeling recent eye symptom activity.
Just to mention in regards to the Med’s, there is belief in some GD circles that the Med’s actually also help reduce antibody activity, so coming off the med’s too soon after getting thyroid levels stable, allow the antibodies to flare up again and there is a relapse. To address this some use an “Add Back Therapy” of thyroid hormone suppliment to keep hormone levels stable whilst continuing the medication, this is a variation of the “Block & Replace” treatment where higher levels of meds are used to completely block thyroid production and supplimentary hormone is taken to keep serum levels normal. You are fortunate to have a doctor who is so attentive, do some research and if you are comfortable ask your doctor about it.

In regards to “Gluten” & diet in general, there seems to be a lot of anecdotal evidence that this aspect may at the very least be an aggravating factor in not only Graves, but a vast number of, if not all autoimmune diseases.
My partner made significant dietary changes as part of her treatment and is convinced that they had a significant impact on the course of her disease. In recent times I have been broadening my reading on other autoimmune discussion groups and am convinced enough that I decided it was time to change my own diet. I always considered my self relatively healthy and just went for the ride with my partners changes, now I am the one driving the change. After a month or so I have noticed a number of changes, the bigest one being in the realm of circulation & thermoregulation, all my life i have had an issue with night sweats, cold hands and feet, I just figured that was who I was, well that’s all gone now. There are a number of other subtle changes as well, you don’t think of these things as issues until you realise they are gone. I also have mild Psoriasis, so have taken pic’s and will be tracking the progress, but even if the improved circulation is all I get, it is enough for me to stick to it.

As for the difficulty of adherence to the a diet, I do understand where you are coming from, although i don’t have a problem, but my partner does a bit, she needs the aesthetic appeal as well and clings a bit to what once was. I think it comes down to how you view it whether it is a “way of life” or a “diet”, if you need to substitute all the gluten & processed carbohydrates with a lookalike all the time it is going to be hard, but if you can let go of your preconcieved opinions of what a meal should be then it becomes a lot easier. I just don’t use bread or dairy (except a bit of yoghurt), we do make a little bit of almond milk and some simple non cereal flat bread, which is easy and keeps some normality for my partner. I am happy enough just loading up on fruit, veg & meat and using dried fruits, seeds & nuts as little snacks, for me I think it also makes a big difference knowing what does what, I think that also helps shape your desires and cravings. I don’t get sugar cravings any more and don’t feel hunger pains either or feel completely stuffed after a meal, I think processed carbs play a big role in promoting the “feast & famine” feelings by sending our insulin levels on a rollercoaster ride.

On another note, Vitamin D levels are worth checking they seem to be low in a lot of autoimmune disease circles and may also be a contributory factor.

[Harpy]

in reply to: Trying to cope with Graves but still feeling in limbo #1171761

Rosethrivedeep
You are to be commended for your determination,
But you may want to consider at the very least taking a small dose of the medication, just to get your symptoms under control. There is some anecdotal evidence from individuals experiences that the medication also assists in reducing antibody activity as well as managing thyroid hormone over production.
By all means try to correct other factors in your life & diet, but think of the meds as first aid, not the final remedy, it will just help you a bit more along the path to healing.

[Harpy]

in reply to: Severe Stress due to Selfish Mother – Not good for Graves #1171550

Darcy43 wrote:

Here is irony for ya…she “Mommie Dearest” was just admitted to the hospital due to severe stress….Now after work, I live at the hospital listening to her rant and rave about how her kids are blah blah and nobody cares about her etc…Jeez

I finally had it and did my best Shirley McLaine empression from Terms of Endearment and yelled GIVE HER THE SHOT, GIVE HER THE SHOT…anti anxiety meds….it worked, she slept and I went home.

Been away for a bit, just catching up
Congratulations on a job well done,
That’s Golden.
Keep up the good work!!!!!!!!!!!!!!

[Harpy]

in reply to: I Know we are not supposed to make hasty decisions during this phase but… #1171845

On the Antibodies, I also believe they have a much greater impact on the rest of the body and not just the Thyroid, there are TSH recepters scattered all through out the body tissues which are all prone to excessive stimulation from the antibodies. In addition to that you probably have other hormonal imbalances due to the Graves disease and these will contribute to moods & perceptions.
Regarding anxiety issues, these may be enhanced by the GD, and may even have been triggered by the GD, but they can often run their own course, so have a look at some tools to help you manage the anxiety. One individual I know had GD & Anxiety come on at the same time, after 18 months on meds the GD tapered away and hormones were all normal, but Anxiety was as strong as ever. Then she found some management strategies and anxiety subdued within a week, it was not hormonal in her case it was behavioural and she just needed to break that pattern. It comes in all weird shapes and sizes, one guy I read about had 6pm Sunday evening anxiety, he would be fine all week, come Sunday he would think will it happen, by mid afternoon he would be a bit apprehensive and then like clock work he would get his 6:00pm attack, something happened one day and he got stuck in that rut, plenty of others experiences out there if you just search “Anxiety Attack”, “Morning Anxiety seems to be a big one.
On the personal issue, as said don’t jump at shadows, stick to the facts of what you know and don’t try to join the dots and add 1+1 to = 5. Be strong in yourself, build your confidance, no matter what the future holds you will be in a better place if you are true to yourself.

[Harpy]

in reply to: Severe Stress due to Selfish Mother – Not good for Graves #1171547

Darcy43 wrote:

I vowed I would never have a child feel like I felt growing up.

Just got to say,
My childhood was full of domestic violence as well and at one point I made a vow: “If this is what having children is about, I never want to have children”
This stuck with me for a long time, I did eventually go back and unravel a lot of twisted bits in my head, sure there are more though, and I also broached the children topic with my partner on numerouus occassions, but neither of us had the overwhelming drive, so we don’t have children either, no regrets either, but was just struck between the similarity of a childhood response.

Anyway it’s all good therapy,
Just get it out, here or wherever, once you get it out then you let it go then your life can continue.
So strange we spend the first half of our lives getting screwed up and the second half trying to get it straightened out.

[Author]

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