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#1 Feb. 20, 2018 19:42:44

joqdvm18
Registered: 2018-02-17
Posts: 5
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Subclinical HypER, experiences from others appreciated

New to this website and forum. Thanks in advance.
1. Asking for experiences with subclinical hyperthryoidism with or without progression to hypER definitive diagnosis.
2. Also asking to see if one beta blocker has worked better than others for some for heart palpitations.
3. Last and most important question: has anyone experienced clinical signs of hypER with normal bloodwork & then progressed to hypER/subclinical hypER?

Family History:
1. Maternal aunt and grandmother diagnosed with Grave's.
2. Sister with other autoimmune disorders (RA, colitis).
3. I am a 47 yo female with multiple thyroid nodules, have had them for many years.

Clinical Signs:
1. Heart palps, gradually becoming worse x 2 mths. Now on beta-blocker, having to switch bc not working well enough. Cardiologist says heart is fine. Heart palps are now 24/7. Was on Bystolic 7.5 mg bid, now switching to metoprolol 25 mg bid.
2. Anxiety and what are probably a few panic attacks (palps get worse, bp elevated) x 1 mth. Not normal for me at ALL. I feel ‘fight or flighty’ at this point most of the time.
3. (Sorry) Diarrhea x 1 month
4. Tinnitus (pulsatile/with heartbeat) - however I have sinus issues as well.

TSH has trended downwards over the past few years:
1. Jan 18 - after some of the clinical signs started: TSH = 0.4 (.35-5.5)
2. Nov 17 -before/when clinical signs were just starting: TSH = 0.72 (.35-5.5)
3. Oct 16 - TSH = 0.825 (.45-4.5) **different lab, Labcorp
4. June 15 - TSH = 4.5 (.3-5.1), Labcorp

FT4 has been normal.
Endocrinologist not interested in re-checking my thyroid values.
I am seeking another opinion, however just wanted experiences from others.

Thank you,
Jo








Subclinical HypER, with TSH mildly suppressed (not below 0.1) with many clinical hypER symptoms.<br/><br/>T3/T4 have been normal.<br/><br/>Chronic urticaria worsened by subclinical hypER (including serious sytemic events)<br/><br/>Multiple thyroid nodules for many years.<br/><br/>Hashimoto's thyroiditis.

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#2 Feb. 23, 2018 17:51:13

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4062
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Subclinical HypER, experiences from others appreciated

Hello and welcome - We've certainly heard of patients feeling symptomatic as T3/T4 are increasing…even if in the normal range.

That's good that you are seeking a second opinion, as the family history of Graves' is definitely a red flag! It might even be helpful to get antibodies tested (TSI or TRAb). Doctors can't treat the antibodies directly, but if you test positive, it might convince them to monitor your levels more closely to see if you do progress to subclinical* or overt hyperthyroidism.

*Treatment for subclinical hyper is usually “watch and wait” - unless you are symptomatic or if you are at risk for heart issues and/or bone loss.


Kimberly
GDATF Forum Facilitator

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

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#3 Feb. 24, 2018 14:26:40

AzGravesGuy
From: Peoria, AZ
Registered: 2012-08-07
Posts: 155
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Subclinical HypER, experiences from others appreciated

Hi Jo!

I was subclinical hyper for a while. Your clinical symptoms sound right on the money.

My dr at the time also had the “wait and see” approach, not caring about my quality of life.
I’m glad you are pursuing a 2nd opinion. If you don’t feel well, your illness isn’t being managed properly. Part of the Graves’ job is becoming your own health advocate. Learn as much as you can and listen to your body.

If you do not feel well you must take action before your quality of life drops. If it already has, then you need to shout louder! Lol

Do not be afraid to act independently with your healthcare. Take that next step. Read as much credible information as you can. Get a consult with a surgeon. Get a consult with a radiologist. Learn about the more permanent treatments you have at your disposal.

Above all…remember you are not alone in this. Read our stories and don’t be afraid to ask questions. Many of us have walked a common path….regardless of age, race, or gender.

Rob

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#4 April 2, 2018 13:12:42

sbaland
Registered: 2018-04-02
Posts: 1
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Subclinical HypER, experiences from others appreciated

Hi Jo!

I am very new to this site, but saw your post and thought I would share, as my situation seems similar, so you are not alone. I was initially diagnosed with subclinical hyper by my primary and went for additional testing to an endo. One endo wanted to start methimazole 5 mg QD based on my lab results (antibody level, but they have not said ‘Graves’ yet) and palpitations, and I got a second opinion. The second endo suggested 7.5 three times a week, but wanted to do the RAI uptake before making a final treatment recommendation (RAI uptake results are pending). Endo also suggested that it might come and go on its own without treatment - I am curious if anyone had this happen - reversing on its own?

A big factor for me - I am also peri-menopausal so symptoms are very hard to distinguish - sweating has been routine for 3 years.

I am wondering if peri-menopause can trigger Graves onset - anyone know?
Does anyone know how high the antibodies need to be before symptoms progress or they diagnose Graves?

I am also going to an eye doc to have my eyes checked, but currently have no overt symptoms of eye disease, but I have had dry eyes for about 10 years so hard to say what it could be due to. A new baseline would be a plus.

I have found it hard to find one doctor that can really look at the whole picture rather than just treat one aspect of whatever it is I am dealing with, but I will keep getting opinions.

Here is my summary of results and symptoms.
- T3/T4 have been normal - T4 close to upper limit, T3 mid range
- TSH slowly dropped over 3 years to 0.01
- Thyroid Stimulating Immunoglobulins just over normal at 148 (normal is <140)
- Thyroglobulin is also high at 49.8 (upper 40.9)
- Thyroglobulin antibodies normal (<1)
- Thyroid peroxidase antibodies normal 4 (<9)
- Pending RAI Uptake test results

- Palpitations started as soon as I found out the above results. I am on propranolol 10 q 8 h which has helped but I made need to increase the dose or go to every 6 hours because every now and then I still feel the palpitations - the endo prescribed metoprolol 25 twice a day, but I went to my cardiologist and she opted for propranolol first. I haven't had any side effects to it.
- The choice of beta-blocker may have been different for my case - I have orthostasis (one episode resulted in a seizure 3 years ago - I am also thinking that has something to do with the hyperthyroid starting, also affected my tolerance to certain lights for a while) so beta blocking drugs were held until now, because they can lower blood pressure.
- Facial, chest and body sweating after I wake up. Has lessened in severity and frequency after starting the beta-blocker and I am also doing meditation so that might be helping, not sure.
- moderate anxiety for years, exacerbates with stress
- Tinnitus for >40 years (progressed to need for hearing aids at age 50)
- Sister with Graves (she opted for RAI); mother with goiter; 2 other siblings (brother and sister) with no thyroid issue
- Sister with autoimmune myasthenia

I am very scared of the agranulocytosis reaction - I have had rare reactions to antibiotics (Cipro tendinopathy and neuropathy) and travel a good deal, so if it occurred I fear I would not be able to get help or else I would have to stop traveling which is a major lifestyle change (I know sounds like not traveling should be no big deal but it adds to the existing stress and I might not be able to visit my kids, etc.). RAI and surgery, though, seem drastic at this stage. I am debating which treatment route to take and am having bad anxiety over it all. I'm still on the search for accurate information.

I hope you get a second opinion and get some additional tests, it may help you decide how to move forward.

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#5 April 2, 2018 17:25:26

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4062
Profile  

Subclinical HypER, experiences from others appreciated

@sbaland - Hello and welcome!

Probably the reason your endo is having you look at treatment options is due to the heart palpitations. For patients with no symptoms, a “watch and wait” approach is often used for subclinical hypER.

Agranulocytosis is quite rare and usually occurs early in treatment. A severe sore throat with fever usually occurs in conjunction with this particular side effect. If a White Blood Cell Count confirms the diagnosis, your doctor will likely ask you to stop taking the meds and consider other treatment options. If I was subclinical hyper and my doc was recommending methimazole, my bigger question would be to ask the doc for his/her strategy on balancing the dosing to avoid knocking Free T4 and T3 too far down.

I don't know that peri-menopause is necessarily a trigger for Graves' - but the symtpoms can certainly overlap, making it tricky to get a correct diagnosis!

Hopefully, you have followup labs scheduled in the future - with your TSI above the cutoff and your family history of Graves' & other autoimmune diseases, you definitely want to make sure to jump in with treatment if you *do* go into full-blown (“overt”) hyperthyroidism.


Kimberly
GDATF Forum Facilitator

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

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#6 April 6, 2018 02:23:31

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 139
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Subclinical HypER, experiences from others appreciated

One thing I noticed that was different between Graves and menopause was that sometimes I'd be lying in bed and, while my feet tend to get cold when I'm lying down, they'd sometimes feel like they were burning up. That was from Graves'. On the other hand, when I felt heat that radiated from my head, that was from Menopause.

To answer your other questions…
When I was originally diagnosed hyperthyroid, I was already taking 25 mg of metoprolol twice a day. I wasn't really having a lot of heart palpitations - maybe because I was already on medication. I had actually gone to see the doctor for a new prescription of my BP med and while I was there, asked about my tremors. When she got my lab results back, she doubled my dosage to 50 mg twice a day and said it would help with the tremors until I could get in to see an endo. I've been on a few different BP meds over the years. I'm currently taking Verapamil. (I was prescribed it years ago by a neurologist, and I asked to try it again hoping it would help with both my headaches and my BP. It hasn't helped my headaches, though).

I've never actually had my antibodies tested. I was diagnosed based my uptake & scan and my labs. I had all the classic symptoms, including some eyelid retraction, so it was pretty obvious that my hyperthyroidism was due to Graves'.

My symptoms got better pretty quickly on methimazole, except for some fatigue that has never quite gone away (and may be due to other health issues or even my BP medication). Even so, other than the first year, which was a roller coaster in which I was actually hypO for several months, I've only had one normal TSH test in over four years. The rest of the time, my TSH has been suppressed, even when my T4 and T3 are normal. Before my TT, my endo wasn't concerned. Now that I no longer have a thyroid, she's more focused on my TSH and she keeps lowering my levothyroxine dose to try to get it in range. After five reductions, I still have a long way to go.* I feel pretty good most of the time, but I've had some eye issues, so I'm eager to get my TSH back where it should be in hopes of nipping the TED in the bud.

* My latest labs: TSH 0.090 (normal 0.45-4.50), T4 1.50 (normal 0.80-1.70), T3 2.6 (normal 2.0-4.8). In this test, my TSH was actually down, and my T4 was actually up from my previous test. And this is with a reduction in my levo.

Edited emmtee (April 6, 2018 02:26:13)

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#7 Sept. 11, 2018 09:57:32

joqdvm18
Registered: 2018-02-17
Posts: 5
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Subclinical HypER, experiences from others appreciated

I am so sorry I have not responded. I was having difficulty accessing this website for a while, now I can finally access it. I have had many new updates and will need to make a new post. Thank you for all the information that everyone gave.


Subclinical HypER, with TSH mildly suppressed (not below 0.1) with many clinical hypER symptoms.<br/><br/>T3/T4 have been normal.<br/><br/>Chronic urticaria worsened by subclinical hypER (including serious sytemic events)<br/><br/>Multiple thyroid nodules for many years.<br/><br/>Hashimoto's thyroiditis.

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#8 Sept. 11, 2018 11:06:49

joqdvm18
Registered: 2018-02-17
Posts: 5
Profile  

Subclinical HypER, experiences from others appreciated

Thank you for your reply. I too agree that the anxiety part of this has been the worst. Actually the doctors discounting my anxiety have been the worst. I hope you are doing well.


Subclinical HypER, with TSH mildly suppressed (not below 0.1) with many clinical hypER symptoms.<br/><br/>T3/T4 have been normal.<br/><br/>Chronic urticaria worsened by subclinical hypER (including serious sytemic events)<br/><br/>Multiple thyroid nodules for many years.<br/><br/>Hashimoto's thyroiditis.

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