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Hurrah, my thyroid is wonky!


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#1 Teatime

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Posted 20 August 2012 - 12:22 PM

And that explains at least part of my fatigue and weight issues!

We finally got a rheumatology practice in my town and my internal medicine doctor made sure I was seen right after they opened. I am cautiously optimistic about the rheumatologist I saw. She actually examined me! That probably sounds like a no-brainer but the last two didn't examine me. They just looked briefly at the forms I filled out and ordered tests/wrote prescriptions.

The new rheumatologist ordered a lot of tests, too, but she told me they're only one part of the equation. She says symptoms, exam, and medical history are equally important. Yay!

So, the lab results must be coming in. They took 10 large vials of blood last Wednesday and then the hospital called me on Friday to say they had to do more tests and needed more blood! I'm guessing that Wednesday's batch is showing up now.

The new rheumatologist's nurse called me this morning to tell me that my TSH (thyroid stimulating hormone) is high and my Vitamin D is low. Still. I'm taking 50,000 I.u.s of D and trying to get a bit of unprotected sun exposure every day. I've also increased my consumption of yogurt. Not good enough, I guess.

But the great news is that my levothyroxine apparently needs to be increased. I have been so, so tired lately and gained more than 10 pounds that I've been unable to lose. I discussed it with my internist two weeks ago and we decided to tweak my neurontin dosage to see if that helped the fatigue. It didn't. And I have been so frustrated by the weight gain. I eat really healthy meals and small portions and I exercise just about every day. Nothing has worked. Now I know why!

I'm really happy. It's such an easy fix that will make a tangible difference. I'll take any improvement I can get!

#2 Joelf

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Posted 20 August 2012 - 12:56 PM

Hi Julia,

Well, it sounds as if you had a very satisfactory meeting all round with your rheumatologist and it is nice to receive an explanation and if possible a diagnosis for the symptoms you're experiencing.

I do hope that the increase in the levothyroxine will be a real benefit to you and will improve your quality of life.

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#3 Shelley Ensz

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Posted 20 August 2012 - 01:03 PM

Hi Teatime,

I'm delighted you have a new rheumatologist who is considering everything. And congrats on having a high TSH, so to speak! I hope they also run thyroid antibody tests on you, as Hashimoto's thyroiditis tends to hang around with scleroderma, too.

As for the neurontin, unfortunately one of it's potential side effects is weight gain, so it's possible it might not be helping the situation any, either.

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#4 Amanda Thorpe

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Posted 20 August 2012 - 01:49 PM

Hello Julia

"The new rheumatologist ordered a lot of tests, too, but she told me they're only one part of the equation. She says symptoms, exam, and medical history are equally important"...that's what we say here too, diagnosis is best made upon a combination of history, tests and examination so you appear to be in good hands!

I am also on gabapentin (neurontin) and find it has really helped with the neuropathy in my feet, I have also gained weight so maybe this is the culprit, but I don't care! I actually have two dresses that I am hoping to grow back into because I prefer their, um, bust line!

That's an awful lot of blood by the way! If you see the doctor in a black cape don't be surprised! :lol: :lol: I didn't know you could have that much taken in one go. Your arm must have been sore afterwards?

Take care and keep posting.
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#5 Teatime

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Posted 20 August 2012 - 02:21 PM

Thank you, Jo! I will see the rheumatologist again before I hop across the pond. We will discuss the test results and plan at that time, presumably, but I doubt there will be time to start anything new. I would be delighted to have more energy for my trip, though, and will gladly take any improvement!

Shelley, wow, no one has ever mentioned a hormone related to this! My mum had thyroid problems and took thyroid replacement. I thinks it was Hashimoto's. I will definitely look into this. It's possible that one of the reasons I had to go back to the lab on Friday and have more blood drawn is she wanted to run more tests when she saw the rise in my TSH.

I didn't know that Neurontin causes weight gain. Lovely. :( Thank you for the good information, though! :)

#6 Teatime

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Posted 20 August 2012 - 11:02 PM

I could have sworn that I posted earlier today. Well, no matter. Now I can respond to Amanda, too! :)

Thank you, Jo! I don't want to get my hopes up too high because time will tell on the new rheumatologist but I am pleased thus far. I think that the hospital may have been more careful with whom they hired this time because the last rheumatologist was such a disaster. I am eager to start the levothyroxine increase with hopes of improvement.

Shelley, thank you for the info on Hashimoto's. I wasn't aware that there was an antibody involved! Perhaps that's why I had to have more blood drawn on Friday. Since the TSH was high, she may have wanted to check some more things. I wasn't aware that weight gain is a side effect with Neurontin! We really can't win, can we? :( I am glad for at least something that may combat this awful fatigue. It's been so bad that I've had to have my son drive me places at times because I will nod off sitting up, even while driving! Scary bad fatigue.

Amanda, My arm really was sore after all of that. The blood was flowing very, very slowly by the time the technician got to the last two vials! When they called me back in on Friday, I had hoped they would stick the other arm but nope! They set me up in a chair that had the folding arm rest on the right, grrr. It did hurt when she stuck me and she apologised. She said she could see the hole in my vein where they got me just two days prior and she tried to avoid the same spot but her aim slipped. Oh, well.

Neurontin really is magic, isn't it? I have nerve pain in my fingers/knuckle area and toes/top of my feet. My feet are the worst. Just lightly touching the skin set off horrible bursts of pain and I could only wear the softest slippers around the house and barely the cloth sandals outside. The neurontin has helped. We're still tweaking the dosage to find the right balance between adequate pain relief and minimal side effects.

Now that I know at least some of the fatigue and weight gain is thyroid-related, I'll be able to resume a higher daytime dosage of neurontin. My internist wants me to take 3 doses per day to always have some in my system but we saved the highest dose for nighttime. How often and how much do you take?

I'm glad you're filling out your dresses beautifully! :lol: I have gained a bit in the bust but I've really noticed it around my hips and even a bit in my lower abdomen! I do 45 minutes on my recumbent bike at least 4 days a week plus yoga and exercise with hand weights on the same and other days. I shouldn't have bulges on my hips! I really hope they go away!

All best,
Julia

#7 Teatime

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Posted 21 August 2012 - 01:59 PM

OK, I guess I cheered too soon. I just spoke with my internist's medical assistant and she said the TSH isn't elevated very much and she wasn't going to do anything about it except check it again in 3 months. So, it appears that I'm back at square one and we need to find out what's causing this horrible fatigue.

The medical assistant is going to talk with my internist and call me back. I am wondering if I should just call the rheumatologist's office.

#8 Amanda Thorpe

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Posted 22 August 2012 - 01:59 PM

Hello Julia

I take my gabapentin 3 times a day at the dose of 600mg each time, I'm on the maximum dose. When I was having nerve pain, I would have he stabbing/electric shock type pain so sudden and so severe that I would cry out and if walking, nearly fall over. All of the pain was in my feet and, like yourself, I have hypersensitivity in my feet. I have a large collection of slippers/slipper boots and often wear them when I go out rather than actual shoes. Mind you I am in a wheelchair so walking is minimal.

Do you find that the gabapentin causes you involuntary movements? It effects my limbs and is worse when I go to bed but the benefits of it far outweigh this!

May I suggest that scleroderma may well be causing your fatigue? In year one I clocked up 19 out of 24 hours asleep and now 21 out of 24 hours and I know someone else who slept the same the entire first year of their illness. People often underestimate the impact of fatigue but don't, it's a killer for sure and it may just be a case of accepting it and learning how to live with it until it improves which it can, rather than keep looking for a curable cause!

Take care.
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#9 judyt

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Posted 23 August 2012 - 06:18 PM

Hi Julia,
I am coming in to this thread a bit late because I have been away for a week with my 'girl' friends so have quite a bit to read.

I note what you are saying about your fatigue and how much exercise you do. For the past few years I have been going to the gym with friends at least twice a week and all that time I would come home and sleep at least two hours in the afternoon. Late last year I started to get regular migraines again and it took months to isolate the culprit which turned out to be one of my meds which had been changed unbeknown to me (manufacturer was changed). Then I got really ill and spent some weeks in hospital and took ages to regain my strength and the weight I lost. Now I am back to my usual weight and am feeling good BUT I have not returned to the gym and I DON"T need to sleep during the day any more.

I know it is supposed to be good for us to exercise, but I am beginning to think that the overwhelming fatigue that goes with it is just not worth it. Amanda will remind us that she has overwhelming fatigue in spite of very little exercise but for those of us who are still able to do most things around the house I think that is just about all we can cope with.

How about trying to cut down on your exercise and see how much difference it makes.

Best wishes
Judyt

#10 debonair susie

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Posted 24 August 2012 - 09:29 AM

Hi Ladies!

Yes, the thyroid/all endocrine glands can sure cause problems! :( As a matter of fact, mine have been "upside down" for a few years now,, as well as my vitamine D level; I also was on 50,00 IU of vitamin D and finally it is up to where I need only take 25,00 IU :P

Yes, I too, take Gabapentin (Neurontin), initially to address the Trigeminal Neuralgia, but also now have neuropathy. I didn't realize it caused weight gain, so I'm also learning today...thanks, Shelley! However, one of my other meds causes diarrhea, so I haven't "realized" the weight gain; my new primary care physician just prescribed another medication for me, so the diarrhea should stop and the new med should be more effective in treating the GERD.

As for the exercise aspect of things, I sure can relate to its effects; I get "wiped out" anytime I do something "more physically taxing" than the norm, causing the overwhelming fatigue that Judyt spoke of in her post. :(
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#11 Carol Lee

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Posted 28 August 2012 - 10:28 AM

Hi Teatime,

Be sure to check what your TSH is. The recommended level is below 3.0 but unfortunately many doctors do not know this and the lab does not put this recommended value. It makes a huge difference for some people to keep their TSH at this range.
Carol

#12 Shelley Ensz

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Posted 29 August 2012 - 03:10 PM

And even though the recommended level is below 3.0, some of us with hypothyroidism find that there is a magic number at which we feel good, which I only discovered when my TSH went to about 1.0 one time. Until then, my doctors had been completely satisfied if my TSH was below 5.0 -- even though I still felt totally miserable. I can feel hypothyroid-awful even at 2.0.

So the question isn't what number your doctors are happy with -- the question is, at what number are YOU happy? It is perfectly acceptable to tell your doctor that you would like to be medicated up to about 1.0 to see if it makes any difference in how you feel.

It can also pay off to read up on the topic of T4 and T3, to be sure you are getting all the right tests, and the right treatment. It took me over a decade to discover that my body isn't good at converting T4 to T3, and a switch to dessicated thyroid hormone made all the difference in the world for my thyroid issues. My primary doctor was very mainstream-only but agreed to prescribe dessicated thyroid for me when I said that I just wanted to try it as an experiment and that if it failed I would gladly go back to synthetic hormone. They gave me a dire warning that it would not be covered by insurance, but it turned out that it was very affordable (and very well worth it) for me. Then they raised the objection that they didn't know how to make the conversion for the proper dose, but I just happened to have printed out a conversion chart from the internet.

Finally, using dessicated hormone and getting the TSH down to 1.0, I was happily out of my thyroid-induced corner of misery. So my advice is to really study up on thyroid issues and then keep on advocating for yourself until you find the medication and levels that work for you. And once you have the formula down, stick to it!
Warm Hugs,

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

#13 Teatime

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Posted 14 September 2012 - 08:30 PM

I'm afraid I have no clue at what level I feel the best because they've only put me on a tiny dosage of thyroid replacement (0.50 mcg) and I've never been given my test results except once when my cardiologist found the TSH was high incidentally. My new rheumatologist gave me my results today, though. It was 4.399 on a scale by which .3-3.55 is "normal."

I'm so tired of being flat-out knackered. I'm sure that disease process is part of it and I have cut down on my exercise but I'm still terribly tired. I think that treating the hypothyroidism better would make a difference!

Julia

#14 miocean

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Posted 15 September 2012 - 05:54 AM

Then they raised the objection that they didn't know how to make the conversion for the proper dose, but I just happened to have printed out a conversion chart from the internet.


Shelley,
:emoticons-line-dance: Do your doctors love you as much as mine love me? :emoticons-line-dance:

:you-rock:

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