Thyroid

[cat.jackson89 206]

I too have Graves Disease and had RAI (radioactive iodine) treatment to kill off thyroid function. I have had to increase my med dose since surgery though we are now starting to bring it back down (though my dose is still higher than it was pre-op). I have had to really learn the symptoms and adjust my dose very slightly myself as the drs opinions all vary. I feel best at around 1.0-2.0 TSH. My primary Dr ran a test and it came back at 4.59 and she told me I was fine. Um no. I was miserable. The last test I had was .74 TSH. My endocrinologist said it was fine. I knew I was feeling slightly hyper so I lowered my dose myself. I take 150mg per day and when I adjust I do so by cutting the pill and adjusting by 1/4 pill per WEEK so it is a very small adjustment but actually makes a difference. For what it's worth, my doctors have all required that I take name brand Synthroid and NOT the generic as the generic tends to not be as consistent. I know millions of people take generic but if you find it fluctuates a lot, it may be worth switching to brand name. Also my endocrinologist requires me to wait 8 weeks in between testing and dosage change. He says as you get older, the dosage change can take even longer. (I am 48.) So just wanted to throw out my 2 cents and what I have learned on this crazy thyroid journey.

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I also take 150 a day. I've been steady and consistent for a few months now. (Thank God!)

[Daisee68 2,493]

One more thing I was going to add is you have to be really consistent with this new and what you eat. I wait at least an hour to eat or drink (other than water). My endocrinologist also said not to have Calcium in the morning (within 4 hours of med) however that doesn't work for me so he said just to be consistent. If I am going to have milk in coffee or a shake with milk, etc just be sure to do it every day or if every other day to do it every other day. Of course we cannot always do or eat the exact same thing but his point is to be as consistent as possible so he knows how to change the med. If he adjusts the dose and then I say suddenly stop all dairy, it can affect the dose so say he changes it again in 8 weeks and then I suddenly start having milk every morning and HR checks it again in 8 weeks and has to change it again bit can't figure out why. I have watched my dad struggle with this for so long. His idiot Dr checks his at 4 weeks after a dose change and then doesn't check again for a year. My dad takes the generic version and has never been instructed to take on an empty stomach. In fact, his Dr has him take one in the morning and one at bedtime. And my dad will sometimes take it with other meds and V8. He is retired but sometimes does consultant work. When he isn't working, he eats maybe an hour after taking it. If he is working, he doesn't eat anything until lunchtime. His Dr even increased his dose to help him lose weight specifically which then led to AFib and a whole other world if problems. I hate this Dr but my dad won't listen to me. I give up. I have tried but I can tell when he is hyper bcs he is so damn mean and irritable. I have to gently ask him some of the other symptoms (like difficulty sleeping, heart racing, etc) and then suggest HR get his thyroid checked. And then his doctor overadjusts and the maddening process with being hypothyroid starts all over. All to say - be your own advocate. You know how you feel. If you cannot get a Dr to listen to you, change drs. I am on my 3rd endo and I really like him. The first one killed my thyroid, gave me a starting dose, tested at 6 weeks and said "do labs in a year and I will have the nurse call you with results". No interest at all in how I am feeling or symptoms or anything. Um no....

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[Daisee68 2,493]

PS Apologies for the rant. You can see this is a very hot topic for me. ????.

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[cat.jackson89 206]

One more thing I was going to add is you have to be really consistent with this new and what you eat. I wait at least an hour to eat or drink (other than water). My endocrinologist also said not to have Calcium in the morning (within 4 hours of med) however that doesn't work for me so he said just to be consistent. If I am going to have milk in coffee or a shake with milk, etc just be sure to do it every day or if every other day to do it every other day. Of course we cannot always do or eat the exact same thing but his point is to be as consistent as possible so he knows how to change the med. If he adjusts the dose and then I say suddenly stop all dairy, it can affect the dose so say he changes it again in 8 weeks and then I suddenly start having milk every morning and HR checks it again in 8 weeks and has to change it again bit can't figure out why. I have watched my dad struggle with this for so long. His idiot Dr checks his at 4 weeks after a dose change and then doesn't check again for a year. My dad takes the generic version and has never been instructed to take on an empty stomach. In fact, his Dr has him take one in the morning and one at bedtime. And my dad will sometimes take it with other meds and V8. He is retired but sometimes does consultant work. When he isn't working, he eats maybe an hour after taking it. If he is working, he doesn't eat anything until lunchtime. His Dr even increased his dose to help him lose weight specifically which then led to AFib and a whole other world if problems. I hate this Dr but my dad won't listen to me. I give up. I have tried but I can tell when he is hyper bcs he is so damn mean and irritable. I have to gently ask him some of the other symptoms (like difficulty sleeping, heart racing, etc) and then suggest HR get his thyroid checked. And then his doctor overadjusts and the maddening process with being hypothyroid starts all over. All to say - be your own advocate. You know how you feel. If you cannot get a Dr to listen to you, change drs. I am on my 3rd endo and I really like him. The first one killed my thyroid, gave me a starting dose, tested at 6 weeks and said "do labs in a year and I will have the nurse call you with results". No interest at all in how I am feeling or symptoms or anything. Um no....

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Not everyone is the same with dosing and restrictions. I was told not to take calcium within 4 hours, too, and to take on an empty stomach.. Which I never did because I was pregnant and it made me sick to wait a whole hour to eat in the morning. Never affected my tsh whatsoever.

[Daisee68 2,493]

Not everyone is the same with dosing and restrictions. I was told not to take Calcium within 4 hours, too, and to take on an empty stomach.. Which I never did because I was pregnant and it made me sick to wait a whole hour to eat in the morning. Never affected my tsh whatsoever.

Glad you have been on consistent dose for a few months. My point being that you what you did, you did consistently, so it didn't affect your TSH because that is the only way it was tested.

[OzRoo 1,492]

@@Daisee68

Thank you for sharing your experience, it helps so much!

As I am learning re Synthroid (Thyroxine in Australia) doses and effects, your posts really help me to understand what is going on with me and what to look for, possible actions etc.

I am glad that you know your body well, and despite what your Primary dr says, the TSH levels do matter, as the "normal" range is so variable ....

I have a pill cutter, and I'll keep it in mind, if and when I get iffy symptoms again.

My Endo will have my 2 last results (both at 6 weeks apart), and it will be interesting to see what my TSH has been in that time, post surgery. I am seeing her on 5th May.

Thank you for suggesting 1/4 adjustment per WEEK.

I heard from other Graves sufferers, that it can make a difference in their well-being!

Despite what some Endos say ...

I was also advised to take the Same brand of Thyroxine, as different ones can vary in strength.

I insist at pharmacy to get the same brand.

Yes, I am older too, I was told 6 week wait for new dosage to take effect ....

Gosh, so many different opinions from doctors re treatment ....

It is such an individual journey, and I agree, it is a Crazy Thyroid Journey .....

This is why I seek information and experience from others, so I can get through this, and learn to manage it, especially after the WLS.

I wish you well on your recovery journey, Daisee68

Your posts give me hope. Thank you !!!

[OzRoo 1,492]

@@Daisee68

No, no rant! Just the expression of the frustrations with this disease. It is completely understandable!

I was told to wait 1 hour after taking Thyroxine on an empty stomach.

I take it First thing in the morning, when I wake up early to go to the toilet. I go back to sleep, and then when I get up I can have my coffee, food etc.

I too was told re Calcium not to be taken within few hours of the Thyroxine med.

The 4 hours doesn't work for me either.

I take my Calcium supplement in the evening, and I don't worry re milk in my morning coffee, as it is a very small amount. However I often have yoghurt Breakfast, but I am consistent with both my coffee and yoghurt each day.

I was recently switched to Nexium for my bad Reflux, and it can leach Calcium from the bones .... I take Nexium 1 hour or so, prior my dinner, in the evening.

So now, I have 2 meds that have to be taken on the empty stomach ... Pain in the a.... !

I am so sorry to hear about your Dad.

You have done all possible for him, and yes, his dr. is an Idiot!

Your Dad is like mine, that they are both stubborn, and will not change doctors .....

My Dad doesn't have Graves, his sister (my auntie) did, and recently died of heart attack ....

It is terrible that your Dad's doctor increases his doses without concern for his heart, and other very serious issues.

My Dad has other health issues, and I talked with him on numerous occasions, I wrote lists for him, etc, and unfortunately he is also stubborn, will not listen, and I now know I have to step back .... We live in different states, quite far away, and it is hard for me to hear from other people how my Dad is deteriorating.

Once I am better, I will fly down to Melbourne, and stay with him, and I hope it won't be too late.

I am still not well myself at this stage.

I have no qualms re changing doctors, asking for what I need etc.

If the doctor does not listen to me, does not care etc, I drop them ASAP.

I am ex-nurse, so I had my share of egos and issues with some doctors, and I am over it.

Good on you for being your own Advocate, Daisee!

Yes, to get good care, we need to be Our Own Advocates, and stick to our guns.

Once again, many thanks for your very helpful posts.

[Kathy812 794]

Wow, learned something again! No one said anything to me about Calcium. I don't take my liquid calcium until later in the day....however, I do drink cream in my coffee within15 minutes after waking up.

Do you guys have any thoughts as to when to use an endo versus your primary dr. To manage your thyroid?

[cat.jackson89 206]

Wow, learned something again! No one said anything to me about Calcium. I don't take my liquid calcium until later in the day....however, I do drink cream in my coffee within15 minutes after waking up.

Do you guys have any thoughts as to when to use an endo versus your primary dr. To manage your thyroid?

Have you been having trouble managing your tsh & t4 levels? PCPs are able to monitor thyroid function, but it might be best just to visit with an Endo at least once a year.. Talk to your PCP, see if they think it's a good idea, should you need referred, etc

[OzRoo 1,492]

@@Kathy812

My lovely current PCP did not pick up on my thyroid issues, on the tests he did. He felt so bad afterwards, poor guy. Thyroid disease can be tricky to diagnose.

I was sent to my WLS Surgeon's Endo (part of his team), and she did whole bunch of tests, not just blood tests, and hence I was finally diagnosed. Then my treatment started.

Years ago, in Sydney, my then PCP picked up on it, but I was very slightly Hyper-thyroid, so we didn't do anything about it. I since moved, and forgot about it, until a year ago.

Personally, I prefer a Thyroid Specialist (Endo), as this disease can be at times difficult to diagnose and treat.

Also, with Brand versus generic version of synthetic thyroid hormone replacement, I was told that it can be OK to take generic version, provided I stick to the Same generic.

I chose to take Brand version. I keep getting the same on my repeats.

Got to keep it in the fridge, as if it gets too warm, it can affect the strength of this medication.

[Kathy812 794]

@@cat.jackson89, nope thankfully it has been under control for years. I was just curious because I see so many people mention endo instead of a primary.

When I asked my dr. about seeing an endo, she said she could refer me but they would probably recommend the same thing -but charge more, so I opted to stay with her.

I like your suggestion, maybe I will see an endo once. Just to see what he/she recommends. In the end, if I don't like what he says, I can stick with my primary.

Thanks

[OzRoo 1,492]

Back in Hyper mode again!

TSH 3.4 in Feb 2016

TSH 0.6 in March 2016 (3 weeks post op)

TSH 0.01 early May 2016 (8 weeks post op)

My pulse is up again with Blood Pressure (lot higher)

Headaches are back

Feeling really hot again

Can't sleep again

Irritable and very tired.

Was advised to skip 1 day each week my 100mcg Thyroxine.

Don't know if I can wait this long for the Hyper thyroid to settle down.

Took Beta Blocker today.

Lost 12 kgs post op so far, and it scares me that with higher loss I will feel unwell again ....

Graves sucks !

I am looking forward to one day my weight stabilizing and my Thyroxine dose stabilising. ...

One day ..... ????

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[Daisee68 2,493]

@ - I am so sorry to hear this! I know how miserable that is. Glad you have a beta blocker on hand. If it helps, even when I only adjusted by 1/4 of a pill per week (ie only 37.5mcg pet week, I felt better pretty quick - within a couple of weeks). Are you scheduled tiniest again in 6 or 8 weeks? 100mcg per week is a pretty. If adjustment and I don't want it to make you hypo and not catch it. Keep an eye on your symptoms and try to wait out the 8 weeks before retesting. Again so sorry you are miserable. It will stabilize eventually! Hugs!!

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[OzRoo 1,492]

@@Daisee68

Yes, I kept my beta blocker for "just in case". I have both propranolol and atenolol, and I am glad that I kept both.

This disease can make life so much harder, especially when trying to get back on track with all the responsibilities, and social interactions.

I have been on 100mcg of Thyroxine since January this year.

4 months after my RAI and thyroid destroyed, I swung to TSH 17.4

Now, back to square one ....

My Endo doesn't want me to cut my pills (ironically I got another refill for more 100mcg script, recently, and still have 1/2 box of the currrent 100mcg .....)

She just wants me to take my med for 6 days, then not take it on 1 day per week.

So, I am to take it Monday-Saturday, then not take it on Sunday

My blood tests are due in 6 weeks time, then again 6 weeks later.

Yes, I have to monitor it carefully.

If in 2-3 weeks I don't see a change, I may have to cut the tablet, and try it that way.

I don't want to go hypo, but hyper is tough too .....

Thank you for your support.

[csawesome 181]

Interesting that she has you skip a day with a .001 level of TSH and bothersome hyperthyroid symptoms. I would think they would either lower your dose to a little daily or every other day.

I have treated my thyroid through multiple endo's and PCPs. But then I found a PCP who is the best of both, she is an internalist. She is just fascinated by hormones and their effects on health and organs. Everytime I see her she has all these new studies she is researching.

I just got my medication lowered from 100mcg/112mcg alternating days to 100mcg daily, but she suspects I will need another lowering shortly. She likes my TSH right about 1 to 1.5. If it were me, I like it better at .5, which she tolerates but always comes with a heavy dose of "too much T3 and T4 in the body can raise cholesterol and contribute to heart disease". My last one was .26 TSH.

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