[Timtahm]

Hi there,

I am an Aussie who developed thyroid storm and TED 6 years ago whilst living in the UK. Unfortunately the medical care and treatment was a terrible experience and caused a detrimental delay in dagnosis (Graves Disease) and treatment.

I was prescribed PTU for 2 years and have had one relpase (2 years ago) where I resumed PTU and became euthyroid again.

I have good days and bad days but never feel totally well. In both the UK and Asutralia, Doctors (GP's and Endocrinologists) have time and again suggested that my feelings of unwellness and periodic symptoms (hear palptations and irregular heartbeat, insomnia, anxiety, tremors, change in skin tone, extreme irritability, tearfulness, low mood, muscle weakness, etc) cannot be related to my thyroid or Graves Disease and is all in my head. I recently believed this and tried anti-depressants for 7 months with little effect and my other symptoms continued.
My TSH, antibodies, T3 & T4 fluctuate. I have a very good diet, get plenty of exercise and try and manage my stress. I also have acupuncture, remedial massage and take supplements.

Whilst my eyes are a lot better, I still exerience slight swelling, some restricted movement (and pain when doing so to the extreme up and side)and proptosis. Optalmologists suggest there is nothing more that can be done.

I would really like to know 2 things in particular.
1. Do other people still feel unwell despite being euthyroid and all test results being in the 'normal' range? - And do you fluctuate?
2. Could surgery (removal of my thyroid) help to make me feel better?

After 6 years of not feeling well I am really finding this journey very difficult to cope with and am desperate for some solutions. I would grealty appreciate any thoughts or advice.
Many thanks.

[Simon]

Quote

1. Do other people still feel unwell despite being euthyroid and all test results being in the 'normal' range? - And do you fluctuate?

I think the short answer is yes.

It isn't as well studied as perhaps it should be. But there are some things known to be more common in euthyroid Graves' patients than euthyroid controls.

I suspect it is largely that even small deviations in thyroid hormone can make for problems sleeping. Grumpiness is a big factor.

Oh and apparently Graves' patients who score higher on tests of hypochondria are more likely to relapse - urm surely that means - oh never mind doctor.

There may also be other things involved. Many people with Graves' have other autoimmune disorders.

Quote

2. Could surgery (removal of my thyroid) help to make me feel better?

These days thyroidectomy tends to be total, so one has to survive on levothyroxine afterwards. People on levothyroxine also have residual symptoms.

Also the science suggests those who do badly on one treatment do less well on average on all treatments.

I suspect if your thyroid levels are in range, than you are doing as well as can be expected with the hormone side currently. You don't say how much your results vary by.

If the variability is a problem I found block and replace allows me to keep my levels more stable, and it isn't as final as surgery. i.e. if you don't like thyroxine you can change regime.

[mmztcass]

Hi:

If your thyroid levels do move around, consider aiming for the mid ranges of normal and see if you feel better there at.

Do you take the PTU in divided doses? I have never done well with either the once per day or twice per day dosings. I take my ATD (antithyroid drug) in three divided doses every eight hours. I feel much better and more normal when I do it this way.

{{{hugs}}} :)

[cdsh3764]

Hi there!

I haven't been on here in awhile but took a peek this morning.

I have been in remission from Graves' since Oct. 09 after taking ATD's for 27 months and recently entered a
somewhat common post-remission stage of mild hypothyroidism so I'm still playing the "numbers game".

Now...to answer your questions.....

While many doctors are satisfied with euthyroid patients having "normal" (aka in-range) levels, this does not mean your
levels are YOUR normal.

When you think about the fact that the thyroid interacts with virtually every body system on a cellular level, each of us will
have levels that "fit" us best.

For most of us, this means FreeT4 level in the upper third of the range and FreeT3 level at mid-range....this was confirmed by
the results obtained from Harvard's extensive Nurse's Health Study.

Since our bodies are ever-changing, it makes sense that our levels will fluctuate SOMEwhat......with US labs, this can mean
as much as a .3 fluctuation in FreeT4 levels and a .5 fluctuation in FreeT3 levels UNLESS the change causes us to have
symptoms - that would mean the change in levels "pushed" us out of our "comfort zone".

That said, if your levels fluctuate AND you are having symptoms, it does not sound like your doctors have tried to fine-tune your dose
and help you to establish what is called your setpoint - the "place" within the ranges of normal at which you feel/function
best.

Since most of us don't know what our setpoint was before our diagnosis, it makes sense to "try on" the most "commonly
comfortable" levels and then tweaking our dose if we still have symptoms......most likely, if you are like most people, you
will find comfort with levels somewhere near mid-range.

To calculate mid-range for your labs, you add the lower number of the range to the higher number of the range and divide
by two. For example, using my lab's ranges for FreeT4 .82-1.77, add .82 to 1.77 and you get 2.59.....divide that by 2 and you get
1.295. That is the midrange for my lab's Free T4. You can use this same math for your Free T3.

Since my former doctors never let me "try on" higher FreeT4 levels (and left me with a significant number of hyPO symptoms),
it is only since I've been under the care of my current doctor that I have discovered my personal setpoint. I need my
FreeT4 to be at least 1.6 (upper third of the range) and then I am COMPLETELY without symptoms.

It's also important to lab regularly (every 4-6 wks) to "catch" any changes in your levels and adjust your dose, if necessary,
before you become symptomatic.

Please note that, since we have approx. 8 times as much T4 as T3, dosing is based upon our FreeT4 levels....our bodies
convert our T4 (storage hormone) into T3 (active hormone - the one we feel). And, just in case you aren't familiar with
the "frees", those are the preferred labs to have run. They measure the amounts of T4 & T3 that are fully available
(aka "free") to meet the body's needs vs. the "plain" or total T4 or T3 that measures hormones that are bound to proteins
as well and are not usable by the body.

These are the things I learned if I wanted to feel well while having Graves' disease....it is possible - it "just" takes some
understanding of how things work and being proactive with your care.

[Timtahm]

Hi again,

Just wanted to say a big thank you for your replies and advice.
I have seen my Endo again who has been quite supportive and understanding, which does make a difference.
She is not keen for me to be on any ATD's as I had an allergic reaction to one and the PTU now comes with a health warning due to a couple of deaths due to liver failure linked to PTU. She felt that whilst I am euthyroid she could not take the risk. She is therefore recommneding I have my thyroid removed however wants to run some further tests first to determine whether there is anything else going on - other autoimmune problems.

I am unsure. It was my preference to try the ATD's to find a balance and see if this helped.
Not sure how I feel about surgery - it seems quite final. Particularly as there are no guarantees that things will get better following surgery. Lots to think about and consider.

Anyway thanks again. I really appreciate the feedback and advice. It is wonderful to have this forum.
Take care,
Tahmara.

[cdsh3764]

Please realize that most people do not have allergic reactions to ATD's.....most "reactions"
are dose-related....in other words, the dose was too high.

I would think you are on a very low dose of ATD right now - you just might want to consider
asking your doctor about switching to Tapazole/methimazole/carbimazole.

And, truly, taking a hard look at your lab history and meds doses could very well provide
a key to your situation.

I am aware of a large number of thyroid forum people taking ATD's for long periods of time -
one member on here has been taking them for over 30 years.