# Please help...bloodwork now in norm range but still symptomatic?!



## Lachrymosa (Jul 25, 2012)

Hello all,

Earlier this year I was diagnosed with both Graves and Hashis as well as a nodule in my thyroid. All of my symptoms have been hyper. To make a long story short, I have been on Methimazole sine July...started at 2.5mg per day, and was upped to 5mg then to 7.5mg per day due to worsening hyper symptoms. I felt pretty good for the couple weeks I was on 7.5 mg. When my bloodwork came back within normal ranges but close to hypothyroid I was reduced to 7.5/5mg on alternating days. I began to have hyper symptoms again when this happened and I complained about this at my last appointment with my endo. She said that I was barely within normal range and now quite close to being hypothyroid, and wanted to reduce me back to 5mg per day. She said that since my bloodwork is normal that my symptoms can't be due to my thyroid. So although I'm not as bad as when I was first diagnosed, I'm still feeling pretty crappy and even have some new symptoms. I was hoping that maybe someone here could help me...

My main symptoms when first diagnosed were extremely rapid heartbeat, feeling of pressure on chest, pressure in throat, constant shortness of breath, severe panic attacks, feeling like I would pass out, insomnia, weight loss, and IBS. Now I occasionally have the racing heart, insomnia, short breath, lightheadedness, IBS and mild anxiety. NEW symptoms are what feels like a heart arrhythmia, sharp pains in heart area (in the front and sometimes in my back), random pains throughout my torso, lights in peripheral vision, muscle twitches, and numb/tingling arms. One night I had persistent chest pains and my left arm went numb. In March I had a 24 hour holter test and heart sonogram which which were both fine. And last night I felt short of breath only when lying down...it got so odd feeling and it actually made me cough involuntarily until I sat up for awhile. I've cut caffeine and chocolate from my diet since they both worsen my symptoms. If these symptoms aren't due to my thyroid now then what the heck us going on with me? Any help at all would be much appreciated. Thanks!

Edit: I forgot to mention that my symptoms also seem more likely to happen around the start of my period, though its not the only time.


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## webster2 (May 19, 2011)

Are you taking a beta blocker as well? What is the long term plan for treatment of Graves?


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## Andros (Aug 26, 2009)

Lachrymosa said:


> Hello all,
> 
> Earlier this year I was diagnosed with both Graves and Hashis as well as a nodule in my thyroid. All of my symptoms have been hyper. To make a long story short, I have been on Methimazole sine July...started at 2.5mg per day, and was upped to 5mg then to 7.5mg per day due to worsening hyper symptoms. I felt pretty good for the couple weeks I was on 7.5 mg. When my bloodwork came back within normal ranges but close to hypothyroid I was reduced to 7.5/5mg on alternating days. I began to have hyper symptoms again when this happened and I complained about this at my last appointment with my endo. She said that I was barely within normal range and now quite close to being hypothyroid, and wanted to reduce me back to 5mg per day. She said that since my bloodwork is normal that my symptoms can't be due to my thyroid. So although I'm not as bad as when I was first diagnosed, I'm still feeling pretty crappy and even have some new symptoms. I was hoping that maybe someone here could help me...
> 
> ...












Have you had RAIU (radioactive uptake scan) to make sure you don't have cancer and also to establish the rate of uptake?

Have you had these tests?

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Substances not found in normal serum
http://www.thyroidmanager.org/Chapter6/Ch-6-6.htm

Your doctor does not impress me; you may benefit by trying to find a better one. It does not have to be an endo.

What blood work is normal? Can you post results and ranges?


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## Lachrymosa (Jul 25, 2012)

Thanks for the replies!

I am not on a beta blocker...I asked for one several months ago and was prescribed Propranolol. After 1 pill I started having very paranoid thoughts accompanied by very strange visual disturbances...anything white appeared fluorescent yellow to me and I kept seeing strange heiroglyph like writing appear in my field of vision...culminating in what I can only call an out of body type experience. I called my endo and was advised to discontinue the med.

My endo plans to keep me on methimazole for max 18 more months, hoping I will go into remission. I have another sonogram of my thyroid next month to see if its grown any...if so they will do a biopsy. I was told I'm not a candidate for ablation since my eyes have been affected by the Graves.

My endo has not mentioned RAIU at all. She seemed very unconcerned about the possibility of the nodule being cancerous. The only tests I have results of are the ANA which was positive with speckled and homogeneous pattern, and TPoAB which was high at 898. I am almost positive my endo said I tested positive for Graves antibodies but I don't have those results.

My latest bloodwork shows the following:
Total T4 6.1 Ref range 4.5-12.5
Free T4 0.8 Ref range 0.8-1.8
TSH 4.14 Ref range 0.4-4.5
Total T3.97.9 Ref range 76.0-181.0
Free T3 2.9 Ref range 2.0-4.4

I haven't been terribly impressed by my endo either and have been thinking that maybe its time to find someone else. I mean my new symptoms seem connected to the reduction in my meds but she says they cant be thyroid related? I was perfectly healthy until my thyroid went haywire earlier this year...I don't think its anything but. I didn't know that I didn't have to see a specialist though...I can see my regular doctor for this? I just switched to a new doctor last month because my my old one just insisted I needed antidepressants and never even thought to check my thyroid.

Thanks so much for the help!


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## Lovlkn (Dec 20, 2009)

Lachrymosa said:


> Thanks for the replies!
> 
> I am not on a beta blocker...I asked for one several months ago and was prescribed Propranolol. After 1 pill I started having very paranoid thoughts accompanied by very strange visual disturbances...anything white appeared fluorescent yellow to me and I kept seeing strange heiroglyph like writing appear in my field of vision...culminating in what I can only call an out of body type experience. I called my endo and was advised to discontinue the med.
> 
> ...


You are now hypo. You will likely have difficulty stabilizing because you have both antibodies working against eachother.

If you have already been diagnosed with both hashi's and Graves you will never go into remission. 18 months is the appropriate minimum time to give anti thyroid meds to work - I gave it 4.5 years - never being able to stabilize and finally had a total thyroidectomy. Your current endo is correct in reducing your meds. It would be a good idea to test and adjust meds every 4 weeks until you decide if you will have surgery or stabilize. Some ppl , despite having high TPO and TSI antibodies can stabilize their labs - although it is usually for a short period of time.

I agree with your doctor in that if you have eye involvement that RAI is not an option. I am even concerned with the RAI uptake test due to the possibility of your eye symptoms being aggravated.


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## Andros (Aug 26, 2009)

Lachrymosa said:


> Thanks for the replies!
> 
> I am not on a beta blocker...I asked for one several months ago and was prescribed Propranolol. After 1 pill I started having very paranoid thoughts accompanied by very strange visual disturbances...anything white appeared fluorescent yellow to me and I kept seeing strange heiroglyph like writing appear in my field of vision...culminating in what I can only call an out of body type experience. I called my endo and was advised to discontinue the med.
> 
> ...


You now are in hypo land and I am sure you feel it!

Are you seeing a Board Certified Ophthalmologist? In some cases, taking Prednisone prevents worsening of the eyes if you have surgery or RAI. I do recommend surgery though if you decide to get rid of the object of the attack.

What you need is a good doctor. It does not matter what kind. Believe it or not, my veterinarian provided more helpful and credible information to me than any other doctor I have ever seen.


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## Lachrymosa (Jul 25, 2012)

Oh wow. I had no idea that my symptoms could be related to hypothyroidism...I always thought it would feel way different than hyper. My endo didn't even mention that my new symptoms could be due to that...well she said it wouldn't be my thyroid at all.

I was afraid that having both Hashis and Graves antibodies would complicate things...I won't be surprised now if I don't stabilize on the meds. I wish in a way I could just skip to the next step & remove my thyroid. It's putting a huge strain on my marriage & I feel it prevents me from being the best wife & mom I can be. My endo did say she doesn't want to go the surgery route unless absolutely necessary. I think its definitely time I seek help from another doctor...you guys have helped at least realize that. Thanks so much for your time and replies. I can't tell you all how much I appreciate it and how much better it feels hearing from others who know what I'm going through.


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## Lovlkn (Dec 20, 2009)

> I wish in a way I could just skip to the next step & remove my thyroid.


Does your insurance allow you to make an appointment with a specialist/surgeon? Can and find out - then do your research and make an appt with a surgeon.

You have history - that shows inability to stabilize - they will remove it if you ask. Bring all the lab's you have to your appointment. I never gave cancer a thought but when my surgeon removed my thyroid she said it was full of nodules - all benign thankfully. I never had a sonogram or FNA or RAI uptake test.

I wish I had better news for you - life post TT for me has been fantastic and saved my marriage. 7 years having symptoms of Graves before being diagnosed was challenging - I feel sorry for my kids experiences with me hyper. My family survived and life goes on. Most important my marriage was saved at the last minute - hubby was feeling pretty tired of living with Graves by the time I was diagnosed.

Now 8 years post op I have to admit I feel much better - now I blame everything on age or menopause - LOL


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## skimordiegirl (Mar 10, 2011)

Along with your first post about symptoms and having graves and Hashis, we are one in the same. I can't seem to find the right dose, have a rapid HR and am not eligible due to side effects from propranalol (depth perception, disconnect feeling, vision issues - which unfortunately never got better after I stopped taking it so not sure if it was really the propranalol for me or the thyroid, but at any rate my cardiologist said I am allergic to it).

:hugs:



Lachrymosa said:


> Thanks for the replies!
> 
> I am not on a beta blocker...I asked for one several months ago and was prescribed Propranolol. After 1 pill I started having very paranoid thoughts accompanied by very strange visual disturbances...anything white appeared fluorescent yellow to me and I kept seeing strange heiroglyph like writing appear in my field of vision...culminating in what I can only call an out of body type experience. I called my endo and was advised to discontinue the med.
> 
> ...


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## JPGreco (Mar 2, 2012)

From everything I've read on here and in my research for Graves, if I had both, or hell, even if I just had Hashi's, I'd opt for surgery ASAP. Hashi's or Hashi's w/ Graves just seems to be so much more complicated as your body isn't even running in a consistent manner to be able to treat. It wants to bounce all over the place, so how anybody deals with that or any doc even attempts to dial in medication is beyond me. Just my opinion though.

At least with just graves (in my case at least) I knew I was JUST hyper. So the treatment has been rather simple. I couldn't imagine having been on the amount of methimazole I was on and then my body deciding it wanted to go normal or hypo on top o that....


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