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Hyperthyroidism High Hopes


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#1 Kathy D

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Posted 26 September 2012 - 10:31 PM

I see my primary physician the end of this week for my overacrtive thyroid test and have high hopes that a treatment will help me. I know what it is like to live with systemic scleroderma (debilitating fatigue, weakness, flu like, never ending low grade fever, night sweats, dry mouth and eyes, joint pain and tender sausage fingers hands and feet not to mention Raynauds while living cold climate). I want to get back to that level of functioning even though it's a fraction of what I used to be.

I gave birth to a miracle baby in 2011. Apparently autoimmune disease had damaged my ovaries then my medications left me completely barren, premature ovarian failure/premature menopause...........Only 18 years of marriage and we now have a beautiful baby!

My pregnancy made me feel amazing for several months after birth, but I thought I was feeling anxious. I had switched from paxil to prozac during the pregnancy and was commited to riding out the side effects to keep my baby safe even though I have been clinically depressed for many years.

My doctor (and I) assumed the "anxiety" was from being an older first time mother with chronic illness of a colic baby, so we increased the prozac dose. My anxiety became worse on the higher dose. We then tried new drugs like Savella and Cymbalta, in hopes of nixing depression, anxiety, and at the same time helping my scleroderma symptoms but I could not tolerate them and we ended up where I had success many years ago, on Paxil.

Even now back on Paxil, the drug that was immensly helpful for me in the past, I was still trembling, trying to catch my breath often, making frequent urgent trips to the toilet and still had uncharacterisitc elevated blood pressure. My eyes have been constantly irritated day and night. The mint in toothpaste or the vents in automobile air conditioning hurt my eyes........... I have tried every lubricating eye drops on the market to no avail. We stayed on the anxiety path and my paxil was increased again two times. The first time increasing from 20 to 30mg exascerbated my symptoms. The second time I was instructed to increase 5 mg at a time slowly. Same thing happened, more trembling, higher blood pressure and I was still feeling weak and down in the dumps with nausea and no eye irritation relief.

Of course, I have been on the internet. I noticed a similarity between thyroid disfunction and some of my complaints, the first place I looked was sclero.org. I remembered thyroid dysfunction after I was diagnosed years ago and read every subtitle of this entire site.

I missed several appointements this summer due to wildfire evacuations (yes my house is still stands and is fine) so my first appt, with my rheumatologist this week I asked him to feel my thyroid. He examined it and added the test to my normal blood panel. It came back overactive.

Cross your fingers for me!

Kathy
Diffuse Scleroderma Diagnosed March 2009

#2 Shelley Ensz

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Posted 27 September 2012 - 10:10 AM

Hi Kathy,

I have my fingers crossed for you, but I have to say, it is making it very difficult to type. However, I will still endeavor to keep them crossed until you get some more answers about your thyroid. Although I have no medical training at all, it does sound from your description like classic Grave's Disease (overactive thyroid).

I have just the opposite, Hashimoto's Thyroiditis, and it took a very long time to be diagnosed. With scleroderma, we are more susceptible to thyroid problems, so it should be on everyone's radar screen to have their thyroid checked periodically. It is very easy to confuse thyroid issues with both depression and anxiety, but as you've found out, we can be drugged into a stupor but it still doesn't resolve thyroid issues.

Please let us know right away when you know more, because my crossed fingers are starting to ache already!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#3 Joelf

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Posted 27 September 2012 - 12:10 PM

Hi Kathy,

I spoke to you a while ago in the chat room and I'm really pleased to hear that you had a successful pregnancy, with a beautiful baby at the end of it! My fingers are also crossed for you with regard to your over active thyroid and I do hope that your primary physician will be able to suggest a treatment to help you and increase your quality of life.

:emoticons-group-hug:

Kind regards,

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#4 Sweet

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Posted 28 September 2012 - 12:11 PM

I too developed thyroid problems a few years ago.

I will be thinking of you! Keep us posted.
Warm and gentle hugs,

Pamela
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#5 Kathy D

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Posted 28 September 2012 - 12:37 PM

Thanks for the support and info ladies!! Shelley, sometimes I cross my toes instead of my fingers so I can keep typing. Jo, baby girl is AMAZING. Walking, baby talking, starting to dance, it's the most wonderful thing I have ever experienced. I am soo soo lucky.

My doctor is scheduling me for an ultrasound and iodine scan (assuming my insurance covers it).

He prescribed something for me to help with my jitteriness (lol is that a word?) and trembling etc. but it was transmitted incorrectly when we got to the pharmacy so I will have to wait until this weekend to tell you what it is... (Amitriptyline).

He also gave me samples of 2 migraine medicines, phew! Though I hope I don't need them.

He said it's likely Grave's, and I will probably have RAI (Radioactive Iodine) resulting in hypothyroidism, then use drugs indefinately to raise the hypo to normal.

I had expected to be put on thyroid meds initially then move on to RAI if they didn't work but guess I was wrong. I also expected to be sent for more lab work (TSI, T3, T4), but maybe that happens after the ultrasound and scan. What do you think?

Warm hugs to you too!

K
Diffuse Scleroderma Diagnosed March 2009

#6 Joelf

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Posted 28 September 2012 - 01:45 PM

Hi Kathy,

How lovely your baby sounds; I'm so happy for you!! :emoticons-clap:

I've found a link for you on RAI treatment and also alternative treatments to it to give you some more information. I expect some of our other members will be able to give you more first hand advice.

Kind regards,

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#7 miocean

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Posted 28 September 2012 - 05:49 PM

Hi Kathy,
A long, long time ago, way before I knew to even look at labs and get copies of reports I was diagnosed with Euthyroid Grave's Disease with Exophthalmos Eye Disease. This all came about when during a visit to my optician he noticed my right eye bulging from its socket and said it could indicate thyroid problems. I saw an endocrinologist who hospitalized me to run tests (yes, it was back in the days when the actually put you in the hospital to do a series of tests) and make sure it wasn't a tumor pushing my eye out, which it was not. I had many of the symptoms of Grave's Disease except weight loss. He treated me with medication, what I don't know, for a period of time and then told me he would have to use radiation on my thyroid and I would be on medication the rest of my life. At that point I sought a second opinion (I knew enough to do that) and gave the doctor copies of my labs and he said I never had a hyperactive thyroid and thought it was a misdiagnosis. Without any treatment my eye returned to normal and to this day I attribute it to a tremendous amount of stress I was experiencing at the time.

Even further back, as a teenager suffering from overweight, my doctor tested my thyroid, said it was a little slow and as he is sitting at his desk, extremely overweight and smoking (!) he prescribed medication and I lost 20 lbs. in 3 weeks. Wonder what that was...?

I have many symptoms of thyroid issues but when tested it is always in the normal range. I take so much medicine now and have ben tested so much that I just deal with it.

Congratulations on your child and I hope you get everything straightened out. Can you seek another opinion?

Best wishes,
miocean
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#8 Kathy D

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Posted 28 September 2012 - 06:26 PM

Hi Sweet, thanks for the support :)

Yes Jo, she IS LOVELY! Thanks for the links. From what I understand RAI is most prefrerred first procedure in the USA and Meds are the most common first treatment in the UK. Interesting. RAI is permanent and then to treat hypothyroidism for the rest of my life? I am not sure about anything at this point.

By the way I was mistaken, the amtrip?? is for my peripheral neuropathy, not hyperthyroidism.
?
I would love to hear some personal experiences with hyperthyroidism as well. What treatment did you choose and how did it work? Are you better than before you started treatment?.

Kathy
Diffuse Scleroderma Diagnosed March 2009

#9 Kathy D

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Posted 03 October 2012 - 08:59 PM

Ultrasound done. Low dose radioactive tracer pills swallowed. Tracer pills scan tommorow. Hopefully results and course of treatment next week!! Weeee!

I set my alarm clock last night and dear husband supposedly set the alarm on his smart phone for me to get up very early. Neither of them went off. Huh!? Anyway I did not get a shower (which takes me forever due to weakness and fatigue) but I did get there on time despite the drive during school zones and construction zone delays :)

Just a little ripe smelling from nightsweats lol, though I think my extra application of deodorant helped...........
Diffuse Scleroderma Diagnosed March 2009

#10 miocean

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Posted 04 October 2012 - 06:06 AM

Kathy,
I hope the result come back soon. Please keep us posted when you find out your course of treatment.

miocean
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#11 Kathy D

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Posted 05 October 2012 - 11:25 AM

I have my results, but I don't know what they mean lol! Hoping to hear from my doctor today before the weekend.

Thanks for the kind messages Miocean, I will let you all know.

My ultrasound says mild goiter, coarse echotexture, and differential diagnosis includes Grave's Disease or Thyoiditis. My RAIU scan came back normal, huh?

Thank goodness dear husband is working from home today and helping me with our baby. I am so trembly and jumpy and the smallest things are startling me, I think I peeled myself off the ceiling 4 times this morning already. I am tired of my pulse racing and trying to catch my breath after only a few steps. I am so irritable but somehow so fatigued at the same time I don't have the energy to react, get angry or say something mean :) I tried a 1/2 xanex last week and it did not help, just made me feel dumb though my symptoms persisted.

I am still sweaty. It snowed here overnight and the air conditioner is letting more cold air in than the heater can handle so my house is not at the usual 78*, wet hands and wet feet have taken my severe Raynaud's to new painful levels. I change my wet socks & shoes every few hours. My husband duct taped a towel over the a/c until he can take it down for the winter tomorrow, we had record high temperatures just two days ago that I now cannot tolerate either.... I have been wearing a sweater backwards from the front, It gives me some warmth on my arms and hands without overheating me. Bet I look silly!

It's not like I have a terrible pain somewhere, it's all the uncomfortable symptoms added together that are getting difficult to handle.

I am stinky from night sweats last night, off to thaw out in a warm bath so it doesn't burn my frozen feet while baby is napping!

Thanks for listening to my complaints
Diffuse Scleroderma Diagnosed March 2009

#12 Joelf

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Posted 06 October 2012 - 09:58 AM

Oh dear, Kathy, I am sorry to hear that you're experiencing so many unpleasant symptoms. In spite of the pleasure your daughter is giving you, it must be very wearing to be constantly sweaty and then chilled and constantly on edge all the time.

Do let us know what your doctor says about your results and meanwhile here's a :emoticons-group-hug: to cheer you up! (I'm the red one!)

Kind regards,

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#13 Amanda Thorpe

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Posted 07 October 2012 - 08:19 AM

Hello Kathy

You deserve to be able to enjoy your daughter without all these awful symptoms in the way. I hope you soon can.

Don't underestimate the impact having a baby has on your body and the subsequent lack of sleep, all things considered you're doing marvellously well and are, dare I say, amazing and your hubby too!

Take care.
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#14 Shelley Ensz

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Posted 15 October 2012 - 02:17 PM

Hi Kathy,

Has the doctor explained your results yet? I'm eager to hear what they have decided, and what your treatment plan will be.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 Kathy D

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Posted 16 October 2012 - 08:35 PM

I cannot express how much your kind words and thoughts help me. Thank You!!

My ultrasound showed diagnosis differential Grave's or thyroiditis, however, the radioactive tracer scan came back normal. I am to retest blood in one month, just over 2 weeks from now. I requested to add the T4, T3, free's and total's to the order. Thinking I should ask for TSI too?

Meanwhile I have started a low dose of antithyroid, methimazol. Some days I feel better, other days not well. It's difficult to discern how much it is helping. The "big" trembling, frequent toilet trips and muscle weakness/aches seem better? The other symptoms remain. I 'think' I feel better but it's hard to tell... I wonder if I am having a "placebo effect", as what I found on the internet says it takes a few weeks for this drug to work and I've only taken it for a short time, if I am swinging hyper to hypo during early Hashimoto's, or slowly getting over thyroiditis. I will let you know when or if I figure it out! :)

My Precious Baby is sleeping in her fleece pj's through the wild and loud wind gusts outside! Sleep well precious baby, and you too sclero family.

Kathy
Diffuse Scleroderma Diagnosed March 2009

#16 Shelley Ensz

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Posted 17 October 2012 - 12:27 PM

Hi Kathy,

Oh, how curious. I suppose you will just have to give it more time for the medication to kick in.

I sure do hope that this is all sorted out soon for you. As you've already discovered, thyroid problems can be very intrusive, and the sooner you can get the issue identified and properly treated, the better! :emoticons-yes:

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#17 Kathy D

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Posted 13 November 2012 - 04:53 PM

Unfortunately I am still miserable, even with the antithryroid drug.

My last round of blood tests were delayed because my doctor told me to wait 2 extra weeks so the antithyroid could get into my system. The last labs show the meds have kicked up my results into the normal range but I still have all the symptoms. I am frustrated I have not heard back from my doctor for his interpretation of my blood results from a week ago and what my future course of treatment is, I left another voicemail on the "nurses line" today. Of course I have been researching this and I am quite disappointed in him for not ordering an entire thyroid panel (especially BEFORE starting antithyroid to establish a baseline), and that I had to make several calls just to get a few basic thryroid tests added to my labs order.

I then became frustrated and tried to self refer to an endo 50 miles away that I had a recommendation for. This new endo is contacting my doctor for a referral and my history and will call me if I qualify. *if* my doctor gives the referral, and *if* the new endo will take me, then I need to call my insurance to see what they cover and if I can afford their care.

I now feel fortunate that I was so quickly diagnosed with scleroderma and didn't have to endure the nightmare a lot of you did, but guess its my turn now with the thyroid. I just can't afford for this to take months or years with my one and only miracle baby growing so quickly, she deserves better and so do I.

I have also developed frequent migraines, most of them nocturnal, when it's too late to use and abortive medicine. I guess I will find out what medicare D charges for maxalt-mlt.

I feel like pulling my hair out but its falling out faster than I can pull!!

Thanks for letting me complain. I will update again, hopefully with better news.
Diffuse Scleroderma Diagnosed March 2009

#18 judyt

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Posted 13 November 2012 - 09:05 PM

Hi Kathy,
Sorry you are feeling miserable, it is a bit like that with this disease isn't it. I have had a round of procedures lately and said to my general practitioner this morning that I think it is all getting to me - I need a change.

You do too I agree, something nice and helpful would be good.

Sorry too about your migraines they are the PITS!. I have suffered with migraines for years and am so glad that most of the time they are under control. I take quite a few meds (as all of us do) and there are a few which I am quite sure suppress the headaches. First of all I take daily Cartia(aspirin) because I am antiphospholipid positive (or negative whichever is the one NOT to be) then I have Amlodipine for Raynauds and Renitec for Hypertension. I know these meds each and altogether prevent the migraines because if I ever stop taking or change one of them the headaches come back. Of course it is not much help if your blood pressure is already low and it is quite likely that your insurance might argue about providing some things.

I use Maxalt melts when I need to and find they do work and I can take one when I am already in bed and that's the best part. I am not the only one on the Forum who uses Amlodipine to suppress the headaches, Amanda persuaded her doctor. to let her try and they work for her too.

Chin up and try to do something fun with your wee one to take your mind off your troubles.
Lots of love and best wishes
Judyt

#19 Joelf

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Posted 14 November 2012 - 02:05 PM

Hi Kathy,

I'm really sorry to hear that you've been feeling so bad even though you've been taking the antithyroid drug. I can understand how frustrated and distressing it must be to feel that you're not really getting any further and that you really ought to be feeling better and you aren't! Infuriating though it must be, I think you will have to get back to your doctor again, even if you have to leave another message and insist that he lets you have his interpretation of your blood test results and gives you an idea of your future treatment.

I do hope that you soon feel much better and that you get some relief from your dreadful migraines, which can't be helping things!

Here's another :emoticons-group-hug: meanwhile,

Kind regards,

Jo Frowde
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#20 Kathy D

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Posted 14 November 2012 - 03:40 PM

Ladies thank you for the great support! :emoticons-group-hug:

I have made ALOT of progress this morning!

Shelley, you are spot on with the word "invasive". That word along with the word fatigue just aren't ugly enough to really describe how difficult either of them can make daily life :emoticon-dont-know:

Judyt, I called the pharmacy and requested a refill on a scrip from 2010 he had given me for Nifedipine for Raynauds (tried both norvasc and procardia in past, realized norvasc was the same you and Amanda are on, and the Procardia seemed to help my Raynauds better though this time its for migraines). If he refills it, I am not taking it just yet, I don't want it to skew any bloodwork results if I get into the new clinic....... If I am not accepted its down the hatch they go and hoping to feel better! (no worries about my cocktail of prescriptions, they are all at one pharmacy that checks for interactions and my rheumatologist won't refill it if he is not comfortable anyway). Ps, He and my all my other doctors are in close contact and can look at my meds rx'd by eachother via the computer.

Joelf, your kind words always make me feel better :thank-you:



DRUM ROLL PLEASE :woohoo:

The new Endo Clinic just called, I'm in :terrific: .
Not only did my doctor make the referral, his office already sent my history to them!! Also unbelievably, the head Endo at the new office has already reviewed my records and wants me to see her office in less than one month!! I will not see her, the Head Endo, as she is booked out till Jan 2013, but instead one of her associates that she directly supervises at a satellite office thats only 25 miles away instead of 50!! They do accept my insurance, I just don't know the percent they will pay but at this point in time I am willing to pull out my credit card.

LOL I am exhausted from all the excitement and good news.

Thanks again Sclero.org family
Diffuse Scleroderma Diagnosed March 2009