Posts Tagged ‘PTU’

After reading about adrenal fatigue and a link to hypothyroidism, I began to realize that a bunch of my symptoms fit really will with hypOthyroidism and not hypERthyroidism.  While I’m convinced I still have some adrenal issues (I’m going to see a naturopath next week), a bunch of my major symptoms fell into the hypo category, such as:

  • dry hair (coarse and wiry, as opposed to ultra fine like it usually is)
  • dry skin – even bumps on my arms and super dry skin on my face)
  • muscle weakness – legs tired easily and felt heavy
  • muscle pains/cramps/spasms – upper arms and calves were particularly prone
  • lethargy – I’m normally I super high energy person
  • mild depression (not so much depressed, but less happy than usual)
  • poor circulation – pins in needles in hands and legs very easily, especially at night
  • major water retention in face, back, stomach, legs, upper arms, etc.. I had a roll of water around my upper stomach. When I came off PTU this roll was slowly getting smaller

I came off PTU 8 days ago.  I was feeling better than I had in a really long time, and was my usual happy self (whom I had almost forgotten completely),  when POW!  My eyes started going…It started to feel like bad allergies. I could feel my eyes swelling and the muscles getting tight. My TED had been in remission since last year, 15 months in total. However, I was still on PTU and didn’t realize my Graves was in remission too. When I stopped PTU my thyroid returned to what felt like normal function, but my eyes just started bugging me again.  I took some PTU and they’re feeling better, but now I know if I come off it completely my eye symptoms while return, which means I’m still producing anti-thyroid antibodies and PTU is holding me steady.

I’ll have to ask my endocrinologist if I can take PTU and maybe a small amount of Synthroid or Armour so that I don’t feel hypo, but also so my eye symptoms don’t come back. I forgot how horrendously terrible my eyes felt. It truly is the worst part of Graves Disease. You look and feel just terrible. Given the choice, I choose hypo over TED! (thyroid eye disease)

Update April 20, 2012

I’ve been off PTU since Monday and so far everything is going great! I still have some Graves antibodies, but not enough to make me symptomatic.  Amazing! And to think I almost had my thyroid killed.

I think my other symptoms are due to hormone imbalance. I had 4 pregnancies close together (only 2 successful). I just read about postpartum estrogen dominance and adrenal fatigue and think it may be the reason for my fluid retention, numbness & tingling and muscle spasms/cramps.


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While they say that Thyroid Eye Disease (TED) and Graves disease are two separate conditions, I have noticed a strong link as of late. Now that my TSH is in the normal range, I can see a very strong connection between my eyes and my PTU meds.  If I’m feeling “normal” then taking my PTU will make me feel temporarily “low” and my eyes get puffy. If I’m feeling “high”, my eyes usually feel “tight” and taking PTU makes them feel better and more normal.  Lately, the connection is strong between when I take PTU and how my eyes are doing on a particular day. When I’m less controlled, it’s hard to pin down the effect PTU has on TED. 

Oh, also of note, I continue to experiment to see what brings me the greatest relief of this stupid disease. Because I was going through a “puffy period” with my eyes, I thought maybe spacing my PTU out would improve the condition. I took half a pill in the morning (instead of a whole) and took the other half in a couple of hours. The result, I felt very “hyperthyroid” and my eyes felt very tight – however, they weren’t as puffy. It made me wonder if the puffiness was connected to my latest TSH score of 1.9 – which would be high for me. 

I probably just confused you with my ramblings, but it helps me to keep track of these associations.

NOTE: My eyes got better after 1 year of constant puffiness and flare-ups – it just stopped. I have some remaining puffiness, particularly under my left eye, but they don’t flare up the way they used to!  Good luck to all!

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So what has my life been like since the diagnosis?  Despite 2 miscarriages – the first one most likely due to Graves (GD was undiagnosed before I got pregnant), and the 2nd one unrelated – I am doing fairly well. My biggest complaint is the Thyroid Eye Disease, and even that seems a little better these days.

Let’s start with my eyes.  As I’ve read, the disease can wax and wane.  I have definitely noticed this – unexplained improvements (good days), and unexplained flare ups (bad days). Lately, I noticed that they were worse right before bed time, which didn’t make sense to me. Plus, I’d wake up worse but they’d get better throughout the day (usually, I don’t see a big improvement throughout the day).  Well, I got blood work done yesterday and I may have an explanation. My last blood test for TSH was 1.9!  Until my last pregnancy which endedin October, it had always been below normal. Now it’s smack dab in the middle of normal. After my  miscarriage my symptoms worsened and I thought my thyroid levels were spiking. I started taking extra PTU (self-prescribed), which I think maybe triggered this TSH improvement (I had only been on 100 mg / day).   I had read that changes/swings in thyroid levels could affect TED, and that if I was going hypo (even temporarily), then this could worsen my eye condition.  For the last two days I’ve taken my 2 PTU pills a day (50 mg each) and my eyes are better today!  Could be coincidence, but I’ll keep paying attention to the association between my PTU dosage and my thyroid eye disease.


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Originally posted May 21, 2010 as “Hyperthyroid: Funny smelling pee. More frequent urination and bowel movements.  I’m reposting because I noticed a lot of people search “PTU and foul urine smell

Now that title should raise some eyebrows! haha. I keep forgetting to mention this symptom, but yes, my pee has not smelled the same since diagnosis.  I’ve had IBS, or irritable bowel syndrome since my teens, basically, and ironically, Graves disease has eliminated the constant constipation that I used to suffer from. One of my IBS symptoms was funny-smelling pee – basically it smelled kinda stinky – kind of like farts. Gross! I know, I’m disgusting.  Now, it smells kind of medicinal, but also stinky like farts.  Just throwing it out there in case anyone also has this symptom. I suspect it’s because of the sped-up metabolism and the PTU?

Also, I noticed that I pee more frequently when my thyroid levels are high. I just noticed recently that I no longer wake up in the middle of the night to pee!  High thyroid levels used to make me thirstier, but it also made me pee and poo more. I woke up every morning with a loose bowel movement and would have at least one more throughout the day.  Now, I sleep through the night and wake up to a semi-firm bowel movement. We must take comfort in the little victories. ha-ha.

PS, I’ve changed my blog theme a few times. If you’re wondering if it’s the same site you’ve been to before, it is!

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So, I’ve always struggled with defining what is wrong with my eyes because they’re not a textbook case of anything. All I know is that in January 2010 they got inflamed, I got double vision and photosensitivity and puffy eyes – and have been like that every day since. 

Since then my main symptoms are puffy eye lids and some photo sensitivity. I’ve been to the optomistrist who said that there is no sign of ocular muscle inflammation and my eye sight was still better than 20/20 (although they were very dry – I wasn’t on PTU yet, which helped with the dryness). 

So what do I have? I don’t really notice lid lag or a pronounced stare. Here’s a picture of my eye – sometimes it’s better than this, rarely has it been worse. The left is worse than the right. I also frequently feel movement behind my eyes, like a pulsing or twitching feeling, predominantly in my left eye, which is worse.

thyroid eye disease female thyroid eye disease male

Finally, I think it’s safe to say that pregnancy has not affected/improved my eye condition. It will be interesting/scary to see what delivery does to it. 

Updated Sept 17, 2010


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The stats:

  • my hair isn’t falling out anymore (well, just a tiny bit).
  • exhaustion has leveled out
  • on 50-100 mg of PTU/day (vs. 100 mg +)
  • TSH was 1.1 on last visit
  • Eyes are puffier than last month but seem to be improving slightly this week

Basically, I feel pretty good right now.  The worst is definitely over (hair loss, exhaustion, heart palpitations). I still have a long way to go, but I’m grateful to have made it this far. 

I still think the veins in my legs and feet are more pronounced (and I noticed this before the pregnancy). I felt my best during week 6 of pregnancy, oddly enough. I felt normal then. I’m not too bad right now. I think week 13 was the worst.

I’m about 5-10 pounds heavier during this pregnancy so I’m trying not to dwell on that, but when maternity pants are tight, let me tell you, it’s not a pleasant feeling! 

I just really wish another pregnant woman with GD would comment on my blog so I’d have a comparable!  It would be especially nice if she was further along than me.  Hint, hint!

On a personal note, I’ve been dreaming of my dog lately. I don’t know if I can wait until next summer for a puppy. Decisions, decisions.  I have had two girlfriends give up their dogs after baby came along, but I always told my daughter, “I’m Pharlie’s mom too”. (Pharlie being my late dog, of course). Plus, he helped keep the floors clean.  I’m so torn!

NOTE: My eyes got better after 1 year of constant puffiness and flare-ups – it just stopped. I have some remaining puffiness, particularly under my left eye, but they don’t flare up the way they used to! Good luck to all!

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What a ride pregnancy is – top it off with Graves disease and it’s a bloody roller coaster.  So, I went to the doctor yesterday and got the results back from my latest blood test.  For some reason they have stopped looking at free  T3 and T4 levels and just ticked off “TSH”. However, the result of my TSH level was over 1.0!  Since my diagnosis with Graves disease in October 2009 (although my symptoms started in August), my TSH level has always been under 0.05. 

Here’s the interesting part. I had upped my medication on several evenings over the past 4 weeks due to extreme heart palpitations between 4:00 p.m. and bedtime.  So, I don’t know what’s going on there yet, but I am comforted to know that my thyroid levels are in the normal range for now – which explains the 6 lb weight gain in the last 4 weeks. Up until 4 weeks ago I hadn’t gained any weight. Well, I’m all caught up now. I’ll have to be extra careful what I eat from now on.  

My hair is still falling out, but not as badly as it was a little while ago.  It’s thinner but not embarrassingly so, yet.

My eyes are the same as always – a little puffy underneath.  I’m still upset about losing my beloved dog unexpectedly and cry from time to time, which doesn’t help. It was just such a shock and he was only 6. He slept in my bed every night and followed me around so I miss him constantly. Have decided to wait until after the baby to get another one, even though I desperately crave a doggy’s love in my home. 

Well, that’s all the news I have for now. I have a requisition for an ultrasound for 19 weeks, so maybe my next post will include my baby’s sex!  Or, I may keep it a secret until the birth. I haven’t decided yet…so exciting!

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