[flora]

#1060482

Hi Forum Friends,
I have posted before about the troubles we have had in our family over the past couple of years – my husband’s Parkinson’s diagnosis and successful Stage 1 cancer surgery last summer, the loss of three friends and family members this Spring, and hardest of all, my Mom’s heart-breaking decline and passing in March. It has been very, very difficult, and will take me some time to get to back to a state of peace and happiness again. My own diagnosis of Graves in March of last year has been the least of our problems, but I am sure everything that I gladly do for my husband, and that I gladly did for dear Mom, was made much harder because of it.
My TSH has been moving around a little within the normal range (on Tapazole), as we try to find my sweet spot – the lab here only tests for TSH, unless you are out of the normal range, when they will supply Free T4 as well. My last dose adjustment was in early May (to 25mg a week – a whole 5mg tablet on M, W and F, and half tablets for the other 4 days). On my last blood draw on June 4th, the TSH had come up from 2.04 to 3.12, and we left the dose alone – I seem to think my sweet spot will be at the higher end of the range (nearer to the 4’s or 5’s, looking back on previous results).
Even though my labs have been moving around, they are in the normal range. Yet for the past while, I have been experiencing some of “my” hyper symptoms (thankfully not all, and not nearly as bad as when I was first diagnosed) – nervousness, thinning hair, some sleep disturbances, reduced appetite, muscle aches, sore feet!, and that flat feeling of wondering where my “happy” ever went to. All the same, I do my best to be cheerful around friends and family, and also to be patient through it all.
To my question, I was wondering if anyone else has experienced their hyper symptoms during times of stress, even though their TSH is in normal range (although maybe moving around within the range) – can having Graves, bring on these symtoms when we are stressed, without necessarily having a big impact on levels?
Always grateful for your welcome replies,
Flora

[kimmysue]

#1182874

I am no doctor and can only tell you my experience and that is stress is a huge trigger for the graves.

[Raspberry]

#1182875

Hi Flora, I am sorry you have gone through so much loss in recent times. I think it makes it doubly hard to fight Graves at the same time as grieving. I believe my own Graves was precipitated by death too. The newly recommended TSH lab range is 0.3-3.0 and that many labs just haven’t updated it and many docs don’t know about it. It sounds like you are suffering hypo symptoms esp the sore feet – they often overlap with hyper symptoms and can be hard to distinguish. I’m not sure where the official statement is saying regarding the range change but maybe Kimberly might know? Your endo might need that to be convinced. Also it is valuable to get your FT4 and FT3 tested….is this an NHS thing that they won’t test it unless you are out of range?

[Kimberly]

#1182876

Hello – We had Dr. Herbert Benson, who is a pioneer in conducting solid research on mind-body medicine, speak at our Boston conference in 2011. He took an informal poll as to who tended to be more symptomatic when experiencing stress. Almost every hand in the audience went up!

I would really encourage you to try and get your numbers for Free T4 and T3. You are still fairly early in the treatment process, and TSH might *not* be the best benchmark at this time for making your dosing changes. I don’t know if your doctor would pay attention to U.S. guidance, but you can find a copy of the guidelines from the American Thyroid Association and American Association of Clinical Endocrinologists in the “Treatment Options” thread in the announcements section of the forum. Ask your provider if he/she can order these tests independently, rather than using the “cascade” or “reflex” test, which tests TSH and then tests T3/T4 *only* if it is out of range.

As for the upper limit of TSH, there is still controversy in this area. Around 2002-2003, and association of biochemists recommended lowering the range, and AACE followed suit. However, in the most recent guidance on hypothyroidism, AACE seemed to be moving back in the direction of raising the upper limit, while recognizing that specific TSH ranges are needed for pregnancy and in the elderly.

Wishing you all the best – and hoping that you can recover your “happy” in the near future. You deserve it!

[flora]

#1182877

Thanks Kimmysue, Raspberry and Kimberly for your replies.
@ Raspberry – yes, we have national Medicare here, and perhaps that’s why only the TSH is routinely followed. I have a friend who is a technician in the Nuclear Medicine lab in the local hospital where the tests are run, and it was she who told me that Free T4’s are only provided when the TSH is out of range. (The range for normal TSH here is 0.4 to 5.25, but she mentioned that consideration is being given to widening them out).
@ Kimberly – thanks for the link to the American guidelines. I have printed it off to carefully read it, and will ask my doctor if we can take a look at the Free T4 and T3, when I see him in early September.
In the meantime, I’ll take all the support this wonderful forum provides – with much gratitude.
Flora

[connypie]

#1182878

hi Flora, boy your life sounds almost like mine the last couple of years.last year i started being unhappy and anxious, and slowly all my mental symptons for graves returned with a vengance.but not many of the physical ones.i finally went to the dr.he did labwork and my t4 was a little high 12.8.but at that point i couldnt think straight anymore.severe brainfog,dr sent me for head ct.i couldnt even tell him what was going on.it seemed i was getting dumber by the day.he reduced my levo from 125 to 112.and i slowly started coming out of it.i am still not completely there,but much better then i was.went and saw an endo and he told me i was stressed out and not a graves flare,since i had RAI 20 years ago.let me tell you i will never let it get that bad again.ill see the dr and get some meds for anxiety if it happens again.i hope you feel better soon and stabilize your levels.i had to learn to say NO to people for my own health,that made me really anxious when i had to tell them.but i found out quite fast that it makes my life alot easier and im happier with less on my plate. connypie

[popscene01]

#1182879

I’m sorry to hear about everything that has gone on & may be going on in your life. *hugs*

Stress is a huge factor. I was actually being treated for Hashimoto’s when I had a huge flip to Graves’ but during a high time of stress between family, my job, and a surgery not related to my thyroid. I’ve finally seemed to level out a year after my thyroidectomy w/my doc only checking Free T4 and TSH now but I still have issues with a mix of hyper/hypothyroid symptoms when I’m in higher stress situations or if my routine changes.

Couldn’t hurt to ask for them to do a full thyroid panel just to see if anything jumps out, as well as other hormone levels. Even with my higher stress my levels have been coming back normal lately though I know my symptoms are associated with my disease. Plus your levels can change depending on the day so what I did was ask for a script and went and had blood work done on a day I was feeling particularly awful. Came back still in normal range though slightly off from what it was before.

I used to have pain also but when I switched from a T4 to a T4 & T3 (Armour) the pain went away. Still had my other symptoms but the fact the pain was gone helped SO much! You don’t have to necessarily switch the dose of your Tapazole but maybe add a T3 med to it. (Tapazole just never worked for me.) I also am on a teeny tiny dose of anti-anxiety/depression med. Only 5mg of Lexapro. Of course this is my med routine, still, entrust in your doctor’s advise but it can’t hurt to discuss everything and ask lots of questions, making sure they explain why they are deciding what they are as your plan of action and that you understand it!

I learned though that with it being slightly off, it’s not worth changing the medication dose as it could take months for that to kick in and usually after a few days of feeling like crap I’m back to normal. If you are feeling bad for a week or more I would stress to your doctor for more help. Not necessarily medicine wise if your levels are normal, but it could be ways to help channel your stress. Like I’ve found for me that taking about 1/2 hour walk every day after work helps me de-stress. (Though I have no idea what I’m going to do in the winter when it snows because I hate going to the gym.)

Good luck!! – Amanda

[flora]

#1182880

Thanks everyone, for the encouraging words – trying hard to celebrate the occasional good day along the way, and to remember that it’s a marathon, not a sprint. I read that here, early in the going, and it seems to sum things up. I did talk to the doctor’s office, and they will order my Free T4 and T3 next time – hope the road is a little less bumpy soon – great to hear from you all in the meantime.
Flora

[shakira7]

#1182881

Hi flora,

Yes, my life right before I was diagnosed with GD has been a turmoil.
I’m talking about 5 long years; things were just falling apart in my life & I don’t even know how I managed to get through those yrs.

You are definitely not alone here.

Shakira

[Author]

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