**Hypothyroid Support Group**

tulip07

Hey everyone!
I was diagnosed back in 1999 by my ob/gyn. The biggest difference I can tell is that if I am off my meds for to long I am completely exhausted and my hair falls out a lot! On the meds (I've taken synthroid & levothyroxine) I am not near as tired and my hair does not fall out as much. It takes a couple of weeks back on the medication for me to feel better. (my current dose is .125mcg)
I have a couple of questions for everyone;
1. What all should the doctors be testing for when they retest your levels? I know TSH is one but what else?
2. Is it neccessary to see an endo doc? (right now my only regular doc is an ob/gyn but I only see her once a year!)
3. Has anyone heard not to take supplements containing magnesium at the same time as your meds? I take a vitamin but it is a couple hours later and Ive just wondered why.
Thanks guys!
Good Luck to everyone!

1. My doctor tests for TSH, Free T3 and Free T4 levels. At one point, he also tested my Reverse T3 level.
2. I believe if your symptoms and levels are under control then your regular doc can treat you. My PCP asked me to see an endocrinologist because 1. she was young and inexperienced in treating this condition and 2. my levels were not under control. So I think it depends on how comfortable you and your doctor are with how your treatment is going. Also, until your levels are normal, you will be seen multiple times in a year. But once they are normal, most doctors only need to see you once a year and test your thyroid levels once a year. Again that also depends on the doctor.
3. The general idea is that thyroid meds are best absorbed on an empty stomach. Food or Vitamins interfere with the absorption, so thyroid meds should usually be taken first thing in the morning as soon as you wake up. Some people even say that certain foods interfere with the absorption so it's best to avoid them. But my doctor said do not change how you take your vitamins and food intake because of the thyroid meds. And that he will adjust the dosage according to my diet and food intake. His thought was if you have always taken say 150mcg with your breakfast or with other vitamins/supplements and your symptoms and levels are under control that means you are okay (it would probably mean your body is absorbing say, 125 or 100mcg. So if you started to take your medicine on an empty stomach then you would need to reduce your dosage since more medication will be absorbed on an empty stomach). It made sense to me!!

I always take my thyroid meds first thing in the morning. With my new Armour medication, my doctor asked me take 1 (60mg) tablet first thing in the morning and 1/2 a tablet around 3-4 PM and that seems to be working well for me so far.

misslyssa319

morning everyone! i was told early on to take my meds alone with water only. juice, soda ar anything else inverferes with med absorbing into your system. and don't take with any other suppliments. what at least an hour in between

i go through cycles of hair loss. i just had my dosage changed and it started again. too bad weight's not falling off instead of our hair!

i know some women have problems with fertility when hypo but i've had 3 babies with no problem. (if i didn't get my tubes tied i probably woulda had babies forever!) they keep a closer eye on you and check the babies after they ar born. luckily my two teen girls never developed it.

you should usually get tested every 6-8 weeks. it takes some time to find just the right dose and what ths level is best for you. i was in the "normal" range and still ended up in the hospital. usually not necessary to see an endo unless that is what you prefer.

tulip07

Yep, I take my morning thyroid medicine immediately after I wake up with 16oz of water. That's at least an hour or hour and half before I eat or drink anything else!

abcwhite10

So......I saw the endo yesterday and found out a few interesting things. One - that I have either developed a heart murmur or have always had one and has gone undetected. She can see and feel the nodules on my thyroid which is new since the last specialist looked 2 years ago, or else just one person is more in tune than the other. She doesn't seem to think that I am hypo, and that I am on my way to being hyper - which is the total opposite of what I am feeling. I couldn't seem to get through to her that my lifestyle (as in less activity and having started to gain back weight - 12 lbs grrr) has changed as a result of my overall feeling of crappiness......not that I have started to feel crappy because I changed my lifestyle. I tried to make it clear that I have lost nearly 40 lbs and was running anywhere from 10 - 15 miles + per week + whatever other exercise (slowpitch, volley ball, some P90X - although not daily like youre supposed to, bike riding and jsut general all the time busy) I could fit in, to running only a couple times a week and now the freaking dishes feel like the biggest chore in the world! I went for a run a couple days ago and I felt like I was running in water, like I had that burning in my muscles like it was the first time I had used them in ages??? Anyways, she is running all kinds of other tests - a cosyntropin - which from what I understand is the way my body produces cortisol, my rheumatoid factor, a coeliac screen, some tests for lupus, and some other autoimmune tests, along with routine stuff and my TSH again. She is also sending me for another ultrasound and possibly a biopsy of the nodules (last time i was to have that done I was told because of the location and small size of the nodules it was too difficult) So here is to hoping for some answers of some sort!!!!

geekymom57

The pharmacist always reiterates that I should take the med on an empty stomach and not to drink/eat anything for at least an hour. That included any vitamins, supplements, etc.

I am currently treated only by my family practice physician. She has my TSH levels tested about 6 weeks after she makes a dosage change to see what it did and then about 10-12 weeks after the levels are within the "normal" range to see if it's stabilized.

I did ask to be retested early about 2 months ago after going about 12 weeks at net calorie amounts that should have been producing about a 1.5 a week--in that period I lost about 5. It turned out my TSH levels had gone up quite a bit and were well beyond the "acceptable" range. That's one of the benefits of diligent MFP logging--it helps me figure out if a lengthy stall in weight loss is likely due to eating more than I eralize or possibly a sign that the TSH levels are up again.

Gottastop

So......I saw the endo yesterday and found out a few interesting things. One - that I have either developed a heart murmur or have always had one and has gone undetected. She can see and feel the nodules on my thyroid which is new since the last specialist looked 2 years ago, or else just one person is more in tune than the other. She doesn't seem to think that I am hypo, and that I am on my way to being hyper - which is the total opposite of what I am feeling. I couldn't seem to get through to her that my lifestyle (as in less activity and having started to gain back weight - 12 lbs grrr) has changed as a result of my overall feeling of crappiness......not that I have started to feel crappy because I changed my lifestyle. I tried to make it clear that I have lost nearly 40 lbs and was running anywhere from 10 - 15 miles + per week + whatever other exercise (slowpitch, volley ball, some P90X - although not daily like youre supposed to, bike riding and jsut general all the time busy) I could fit in, to running only a couple times a week and now the freaking dishes feel like the biggest chore in the world! I went for a run a couple days ago and I felt like I was running in water, like I had that burning in my muscles like it was the first time I had used them in ages??? Anyways, she is running all kinds of other tests - a cosyntropin - which from what I understand is the way my body produces cortisol, my rheumatoid factor, a coeliac screen, some tests for lupus, and some other autoimmune tests, along with routine stuff and my TSH again. She is also sending me for another ultrasound and possibly a biopsy of the nodules (last time i was to have that done I was told because of the location and small size of the nodules it was too difficult) So here is to hoping for some answers of some sort!!!!

My thyroid is DEAD due to the RI I took. But my tissue is still there. I was in for 4 biopsies over a 2 yr span (The 2nd came back 'inconclusive') my Endo says that sometimes it's just a freak of nature. Your body has nothing better to do than attach a fluid pocket to some useless tissue (I asked if she could biopsy my cellulite off my butt too at that point LOL) I just happen to be one of those ppl that I get a nodule every once in awhile & then it goes away. I bruise really easy & the biopsies hurt like heck so now if I have a nodule in the same area 2 visits in a row (I go every 6 months) then we ultrasound & biopsy; luckily she will do the ultrasound & biopsy the same day.

Gottastop

I Live in Ohio & they are very strict when it comes to alternative medicine & what they will cover insurance wise.
Typing up my story I realized how long it's been since I've been me AND my Endo called today & wants to LOWER MY DOSAGE. HELLO I can not stay awake in the afternoon to get my oldest off the bus, something is wrong (Oh yeah, that brain fog sucks!)
But I am just over the high end of normal. She left a message so I didn't get to ask for my numbers but this is the straw that's broken my back.
We had to switch insurance this last go around so I'll be making calls either tomorrow or Monday & find someone else & yeah, I don't mind a 45m drive; it's when they are over an hr that I mind, but I'm going to start looking.

How do they test for reverse T3?

Your story sounds a lot like mine. They blamed my little kids, work, stress, guessed I was over-eating, not exercising enough instead of listening to me and my symptoms. I was always in a brain fog and exhausted 2 hrs after waking up in the morning. That cannot be normal and cannot be because of my kids!

Good to know your new doc is running more tests. Where are you located? Try to find a doctor who is into alternative medicine even if he's not an endocrinologist. My doctor is 45 minutes away from where I live and not an endocrinologist and just a very very good doctor. Everyone asks me how come I don't see one of the many endocrinologists within 10-15 minutes of where I live. I just tell them, I have felt crappy for long enough that I will drive a few hundred miles if I can find the right doctor

It's my opinion that doctors who are into alternative medicine (they usually have accupuncture and other alternative therapies in their practice) are more inclined to listen to the patient and diagnose the whole body instead of just the thyroid, listen to your symptoms and try other medicines. I have already said this on this thread but will repeat for you. Armour thyroid has really helped me (with little help from Vitamin D and DHEA), so I would say, insist on trying Armour or a combination of Synthroid (or other T4 only medication) with additional T3 medication. Synthroid is T4 only and a lot of people have problems converting T4 to T3 well and T3 is what can be readily used by your body at any given time and not T4.

I hope that helps a little.

PS: I was soooo happy to read that you kept your pregnancy and your little boy turned out to be normal after your RI !!

tulip07

Well once again what you said sounds exactly like what happened to me. About 4-5 months ago, the endo I was seeing tried to lower my dosage when I was still feeling hypo (same as you, exhausted, wanted to nap at my desk at work, the brain fog, the works!). He left me a message too and I never called him back. Instead I found this new doctor.

About the alternative therapies, this doctor is still a regular doctor with a family practice, he is just someone who is open to alternative therapies. Since he is a DO (an osteopathic physician, who still had to go to medical school) he accepts my insurance (I live in Pennsylvania, our insurance situation isn't that great either). My insurance probably doesn't cover any of the other therapies like accupuncture that they offer at their clinic, but all my regular doctor visits to get my thyroid levels under control are still covered. Reverse T3 is also tested just like TSH, through blood tests. When I told him that my TSH was borderline hyper but I am feeling all the hypo symptoms is when he tested for Vitamin D, adrenal gland function and also switched me to Armour thyroid because he thought my body is not converting T4 to T3 efficiently and I needed the T3 that Armour has. Armour thyroid is cheaper than Synthroid and is covered by prescription coverage, it's just that endos don't prescribe it for some reason.

harleigh67

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spottedlee

Yep, I take my morning thyroid medicine immediately after I wake up with 16oz of water. That's at least an hour or hour and half before I eat or drink anything else!

An hour? I was told 30 min wait. When I asked if that mean no coffee for that long, they told me that I can have coffee as I wait for food

FYI, I am taking 50mcg Levothyoxine.
I was diagnosed just a few months ago after being told that my thryrod was normal for so many years. I gave up on it about 10 years ago. When I read on the internet that about 5 years ago the testing method was revised, I asked my doc about it and she confirmed the change and I agreed to be tested for the umpteenth time,, guess what? LOW! just as doctors suspected for last 30 some years. Oh well

kat05317

Thanks for the info, I have never heard of a reverse t3 before. I've taken my meds on an empty stomach for years, usually right after I wake up and before I start getting ready. Its at least another hour before I eat anyway so I guess it's always worked for me. I have just wondered why they tell you to take them on an empty stomach and no vitamins or anti-acids for a couple of hours after. I guess it did not occur to me that it would cause problems with your body absorbing your meds.
Thanks!

misslyssa319

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did you mean add you to the group (it's open) or as a friend? :huh:

Gottastop

I was told a half hour too, One time I was told 20minutes. I just don't want to chance it & I typically get so busy with the kids it turns into at least an hour before I eat & baby you better believe I have coffee (w/ milk or half & half) within a half hour of waking up. LOL I am NOT a morning person

Yep, I take my morning thyroid medicine immediately after I wake up with 16oz of water. That's at least an hour or hour and half before I eat or drink anything else!

An hour? I was told 30 min wait. When I asked if that mean no coffee for that long, they told me that I can have coffee as I wait for food

FYI, I am taking 50mcg Levothyoxine.
I was diagnosed just a few months ago after being told that my thryrod was normal for so many years. I gave up on it about 10 years ago. When I read on the internet that about 5 years ago the testing method was revised, I asked my doc about it and she confirmed the change and I agreed to be tested for the umpteenth time,, guess what? LOW! just as doctors suspected for last 30 some years. Oh well

misslyssa319

insomnia has hit again. o joy...:yawn:

KatiePeca

Hi everyone. I was just told today that I have underactive thyroid, and I have a script for Synthroid I'll start today. I'm hoping that getting this under control will help me with my weight loss and also with the hair loss I've been experiencing. I'm looking forward to reading more in this thread when I get the time, but in the meantime can anyone tell me if you've had success jump starting weight loss once you started meds for your thyroid?

Thanks

Katie

geekymom57

Hi everyone. I was just told today that I have underactive thyroid, and I have a script for Synthroid I'll start today. I'm hoping that getting this under control will help me with my weight loss and also with the hair loss I've been experiencing. I'm looking forward to reading more in this thread when I get the time, but in the meantime can anyone tell me if you've had success jump starting weight loss once you started meds for your thyroid?

I read your message just after calculating in my head what my average weight loss has been since starting MFP in late March and the phrase "jump start" doesn't apply in my case. I've been on various doses of Synthroid for the past 3.5 years and the MD is having a hard time stabilizing the TSH levels. I stalled for a good 8 weeks with losing nothing on 1200 calories, with only a few days in that period where my calorie deficit was less about 600. I got my TSH level checked a few weeks early and it turned out it had spiked up again. After increasing the dose again, I lost about 3 pounds and now I've been stuck again for about the past 3-4 weeks.

Other people's experiences will vary, but for most of us it's probably not going to be the magic potion that leads to instant results. I just know now that when I really stall it makes sense to ask to have my level rechecked, since I go up and down so much.

samhradh

Hi there,
I dropped in at the start of this thread but have not posted until now.

I was diagnosed with Hypothyroidism over 10 years ago, and it has been manageable until i turned 40.
Now however i am crashing big time, all the classic symptoms, cold, grumpy, hair loss, insomnia, lack of libido, depressed.
Attended the GP this morning to get the results of the last blood work , i think my meds need adjusting, he is reluctant to do this as he feels that he does not have enough knowledge about the condition, and has refereed me to an Endocrinologist.

I know this is the right course of action, but it could take months to get an appointment, and i just have to put up with feeling crappy until then.
i am tempted to self medicate and just take 50mg extra a day just to see if that improves my symptoms.
current prescription is Eltroxin 100mg for 5 days & 150mg for 2 days.
these are the current levels:
TSH 0.148 mU/l
free T3 4.7 pmol/l
free T4 19.4 pmol/l

cholesterol is also high at 6.66 mmol/l but thats a great improvement from 6 months ago 8.80.

so really i am asking for all your knowledge and experience, would you adjust your meds or just wait it out for the specialist it could take up to a year to get seen by the Endo

Oh i have always taken my meds last thing at night, just wondering if this is not the best approach since reading all the above posts.

As to my weight i am fat because i eat crap and don't exercise, now that i am trying to make more healthy choices and do some exercise the weight is going at an ok rate i think.

Just so you know i am from Ireland.
Thanks for taking the time to read my post.
Sam

tulip07

Sam, No I absolutely wouldn't change the dose myself especially if you have not been told to do that or if you have no experience doing that. I don't know what Eltroxin is but (as far as I can tell) your numbers indicate you are Hyper right now and not Hypo. So if Eltroxin is thyroid hormone T4, your endo may want to reduce your dose and not increase it. Or may change you to another kind of medicine that adds T3 along with T4 (which is what they did with me). More reason not to change the dosage yourself!

I am in the US, and I was in a similar situation as you and couldn't imagine waiting months for an endo appointment. One Friday I was feeling so bad that I could hardly get up from the sofa. We called each and every specialist in my area and found one endocrinologist about an hour away with an appointment because of a cancellation. They saw me the following Monday. Can you try something like that? Or maybe find another family doctor who is more experienced and willing to treat you before your endocrinologist appointment. Either ways it's just WRONG that it takes a year before you can get a specialist appointment where you are!!

And yes, try to take your meds first thing in the morning for a couple of days and see if you feel any better(?) I think this is something every doctor recommends so you could do that even before your visit to the endocrinologist.

sunnyrunner23

Bump so i can read later

samhradh

tulip,
thank's a million for your advice, i kinda knew not to tamper with the meds.
I will switch to mornings from tomorrow and see how that goes.
I so don't understand the numbers and the www is so full of conflicting information, hence my post , i knew that there would be knowledgeable real people on MFP who could give so sound advice.

I am going to try to get a private appointment ( €200) with an Endo even though we are broke at the minute, as they say your health is your wealth, and i just can't go on like this for much longer.

Sam