[KareNZ]

#1018280

Hi all

I live in New Zealand. After I had my first child in 1992 I developed Graves, was treated with Carbimazole (reacted) and then Propylthioruracil, to which I eventually reacted about 2 years later. Surgery was the option for me as I had a 2 year old son at the time and didn’t want radiation etc. So they did a subtotal thyroidectomy and I have been on Thyroxine ever since.
Lately I am feeling a lump in my throat most of the time just above my scar, internal though rather than the large goiter I had originally. Worse in the evenings. Some difficulty swallowing. I am tired, I don’t sleep well.
Lots of stress for the last 5 months, sinus surgery with 4 days postop bleeding, father in law died unexpectedly, bad asthma for 6-8 weeks on Prednisone, then we had a massive earthquake and are dealing with the long term uncertainty of whether we can rebuild our home, and when. Also just found out last week I have iron deficiency anaemia (with normal Hb levels) – of course I am tired.
My GP says my TSH is upper limit of normal and my T4 is fine. (sorry don’t know actual numbers). I have not seen an endocrinologist for about 6 years.

Does anyone know if it is possible for Graves to recur so long after surgery?

[Bobbi]

#1063718

Wow — you have been through a whole lot in the past few months! Is it any wonder that you are feeling "off?"

To deal with your question — "Graves" — in the sense of the autoimmune disease — never goes away. The antibodies that caused you to become hyperthyroid long ago, typically persist. But antibodies are very specific to a "target." Antibodies against chicken pox virus, for example, do not kill off common cold viruses. Our Graves antibodies target the thyroid cells, causing us to overproduce thyroid hormone. But removing thyroid, as you did, helps to prevent hyperthyroidism from recurring. If you had enough thyroid removed long ago, you might need occasional adjustments in the amount of replacement hormone that you take, but you should not expect a total, rampaging recurrance (sp??) of hyperthyroidism. Since you have had your levels checked and they’re within the normal range, your hyperthyroidism has not come back.

I had to rebuild my house after Hurricane Andrew in the US long ago. It’s hard. If you can, just take one step at a time, view your progress (however slight) and pat yourself on the back each step of the way. You will get back to normal someday. I do wish you good luck.

[Kimberly]

#1063719

Hello – Sorry to hear that you have had so much to deal with over the last few months. It *is* possible in rare cases for thyroid tissue to regenerate itself after surgery or RAI…but as Bobbi said, if your labs are in the “normal” range, your hypERthyroidism hasn’t returned.

It sounds like you have had a successful partnership with your GP for the last few years…but it might be worth a visit to an endocrinologist just to check out what is going on with that lump. Even if it turns out to be nothing, it will give you one less thing to worry about with everything else that you have going on right now.

Wishing you all the best as you go through the rebuilding process.

[mamabear]

#1063720

I agree, looks like a trip to an Endo is in order.
With your sinus issues, coudl this be post nasal drip?
Did your General dr. do a Strep Test to see if this is just strep that is causing the throat problem?
do you have a rash anywhere on your body or very itchy-that is very typical of a Strep infection.

You know your body better than any lab work, so keep up the good work with knowing what is going on with you and keep a log of it. Keep your general dr. aware of what is going on.

[KareNZ]

#1063721

Thanks for the replies and support everyone.

I was fairly sure the reason I am not so well lately is stress – and now anaemia as well.
In New Zealand there is not a lot of support for T3 replacement by the medical profession, and I am wondering if I need that as well as T4. I will push for a referral to an endocrinologist.
My GP has given me nasal spray in case of post-nasal drip, and did whooping cough swabs but not strep.
Being anaemic has an affect on thyroid medication absorption, and cholesterol as well – mine is higher than it usually is.
I am now on iron, and have started fish oil on the basis that it probably can’t do any harm and may help with some other problems!
Good sleep would be nice. I can’t take medication or a glass of wine very often as I am often on call for work(hospital) and wouldn’t be safe driving.
We had a large aftershock 5 days ago, and since then very few, which is not what has been happening (we have had more than 2000 aftershocks so far), and now I am worrying about when the next big one will occur!
We are still in limbo about our house. I understand the people with the worst land damage will get help first, and then the rest of us. We are in the "moderate" land damage category, but the "severe" house damage one, and suspect our house needs demolition and rebuilding, but have to wait for the authorities and insurance companies to decide.
Oh well, one day at a time is all we can do!

[Kimberly]

#1063722

Hello – I have heard mixed reviews from patients about adding T3. Some patients feel much better when adding T3 to their regimen…but others have found that it actually caused a recurrence of their hypER symptoms.

T3 is more active and potent than T4. Normally, the body converts T4 to T3 on an “as needed” basis. However, when you take T3 directly, you are getting a big dump of a very powerful hormone…but then it has a fairly short life span within the body. So you could end up with fluctuating hormone levels throughout the day.

One endo at our recent conference actually suggested splitting up one’s T3 dose throughout the day. (Although another doc said that this was not necessary…just goes to show how many differing opinions are out there!) Some endos are more receptive than others about adding T3, so you might need to “shop around” a bit if you want to give this approach a try.

One other thing to mention about the iron – hopefully, you received instructions to separate the iron supplement from your thyroid hormone replacement, as iron can affect the absorption of your replacement hormone.

Best of luck with the rebuilding process – take care of yourself!

[Author]

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