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#1 July 2, 2020 11:04:30

pinonbistro
Registered: 2020-07-02
Posts: 2
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In remission from Graves' with symptoms of hypothroidism

I was diagnosed with Graves' in 2002. At the time radioactive treatment was the norm, at least in AZ. Because I had both the associated eye and skin disease I wanted to try to control the disease with meds in the hopes that these conditions would improve over time.

Fortunately I was working with an endocrinologist at the time who was willing to let me try what was then called the European protocol–methiamazole to shut down the thyroid gland and Synthroid to replace the thyroid hormone (early on I had to take a beta blocker as well to reduce my heart rate). It took 12 years for my TRAB to register negative–eg. no anti thyroid antibodies. For most of this period I felt completely normal and symptoms of both the eye and skin diseases disappeared.

In 2014 I went off all of the meds. My bloodwork has been fine until 6/29/20 when my total blood cholesterol increased from 161 on 2/20/20 to 213 on 6/29/20, despite the fact that I am on a statin and have made no changes to diet and exercise, and my TSH increased from 1.32 to 2.70 (for the 6 years since remission it has fluctuated from 1.02-1.32). Additionally I've developed symptoms such as extreme fatigue, sleeping 10 hours a day, and muscle weakness in the thigh muscles.

At the time I went into remission in 2014 my endocrinologist, now retired, warned me that I would not stay in remission forever. He said flatly that I would either develop active Graves' or Hashimotos.

I just read the wonderful article on this site about subclinical hypothyroidism which seems like what I have. In my case the fatigue, cardiovascular disease and lipid abnormalities seem to make levothyroxine treatment a reasonable choice as I have no signs of osteoporosis and exercise daily. The problem is my endocrinologist retired and I was set to see a new one before Covid-19 hit but she has cancelled all appointments.

Any input would be greatly appreciated.

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#2 July 2, 2020 18:19:23

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4184
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In remission from Graves' with symptoms of hypothroidism

Hello and welcome! We're fellow patients here and can't give medical advice, but is there any chance that you could get an appointment via telemedicine with your primary? It's true that hypothyroidism can actually push cholesterol higher - in fact, medical guidelines recommend that if someone has a brand new diagnosis of high cholesterol that you check their thyroid first to see if that's the real problem! This might be a “watch and wait” situation to see if your TSH increases further, but it's important to get advice from an expert.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 July 3, 2020 09:12:24

pinonbistro
Registered: 2020-07-02
Posts: 2
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In remission from Graves' with symptoms of hypothroidism

Thanks Kimberly. I have called and messaged my primary care provider and have not heard back yet. Her office called a week or so ago to tell me to get my bloodwork done first and then make an appointment for a physical. It was that bloodwork that showed the increase in cholesterol numbers and TSH. I have asked for a telemedicine visit as I am not comfortable going to my provider's office given the recent surge in Covid-19 in my community. Hopefully I'll hear back soon.

I've done a little more research and it seems likely that she'll recommend a wait and see approach to see if the TSH and cholesterol numbers normalize. According to the Mayo Clinic that would be the likely approach for someone who may have early Hashimotos or other subclinical hypothyroidism.

In tracking my bloodwork over the years since my diagnosis with Graves' in 2002 I noticed that when my thyroid gland is hyperactive both cholesterol and glucose decrease; when it is hypoactive both cholesterol and glucose increase. I've seen mention of the cholesterol piece in the literature but not the glucose though both are I think impacted by metabolism which is regulated by the thyroid gland so it makes sense.

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