Has anyone got an underactive thyroid?

[ruthyb]

Hi all

I feel like all I am doing at the minute is moaning

I have an underactive thyroid since having nearly all of my thyroid removed in may due to a large goiter. I am struggling to find help and advice and my doctors just basically send me for blood tests and up my meds as needed, no help really. I've really not been feeling well lately and I just need a bit of support. I have joined a couple of thyroid forums but to be honest there isn't many people o them and not much response. Its a long shot but thanks.xx

 

[darkmavis]

Oh, Ruth, I'm so sorry you're not feeling well lately.

I don't know anything about thyroids really, though my mom was recently diagnosed with a slightly underactive thyroid and is now on medication for it. I know how it is though to feel crappy when you're sick with something that no one else around you has, and they just don't get it when you say you're ill, because you don't look ill! Frustrating!!!

So, I guess I have nothing useful to offer you regarding your condition, but just know that I'm here if you want to talk or vent or whatever, about the thyroid or just about life in general.

 

[ruthyb]

Originally Posted by DarkMavis

Oh, Ruth, I'm so sorry you're not feeling well lately.

I don't know anything about thyroids really, though my mom was recently diagnosed with a slightly underactive thyroid and is now on medication for it. I know how it is though to feel crappy when you're sick with something that no one else around you has, and they just don't get it when you say you're ill, because you don't look ill! Frustrating!!!

So, I guess I have nothing useful to offer you regarding your condition, but just know that I'm here if you want to talk or vent or whatever, about the thyroid or just about life in general.

Thanks hun, it really is frustrating that nobody understands or can tell me anything really. I keep to myself how I am feeling, I know it is to do with my thyroid condition and that once my meds are sorted I am supposed to feel ok but i can't see that at the minute. I could go on but I'm not a whinger and I hate being ill. I wish I had never had my op now.x

 

[otto]

My doc has me on Synthroid, the NAME brand, and it has helped tremendously. I started on Armor Thyroid, and loved it, but it is just too difficult to find, and I couldn't be running out of my meds all the time.

So the doc switched me to synthroid and of course my insurance paid for generic, which was a nightmare.

I had a long talk with the pharmacist and she said it was possible I was sensitive to either the dye or the binding agents in the cheaper drugs and I should try the name brand.

It made perfect sense, because I had had the same type of bad side affect reaction to the generic of another medication I take. I have to take the name brand of the other med and it is costly, but worth it.

So I tried the name brand synthroid and I'm doing great on it.

 

[ruthyb]

Originally Posted by otto

My doc has me on Synthroid, the NAME brand, and it has helped tremendously. I started on Armor Thyroid, and loved it, but it is just too difficult to find, and I couldn't be running out of my meds all the time.

So the doc switched me to synthroid and of course my insurance paid for generic, which was a nightmare.

I had a long talk with the pharmacist and she said it was possible I was sensitive to either the dye or the binding agents in the cheaper drugs and I should try the name brand.

It made perfect sense, because I had had the same type of bad side affect reaction to the generic of another medication I take. I have to take the name brand of the other med and it is costly, but worth it.

So I tried the name brand synthroid and I'm doing great on it.

I'm on thyroxin which is apparently according to my doctor all you can have over here. I'm still trying to get mymeds sorted, I have to wait another 2 weeks before my next blood test which is driving me mad because I know I need my dosage upping.Tell you this is the worst thing I have ever had to deal with my symptoms are ridicolous and if I were someone else looking at me I would think "that womans mad"

I have to laugh or I would cry.I don't think thyroid problems over here are well recognised I fought for 2 months to be diagnosed with a goiter one doctor told me it was my glands! x

 

[darkmavis]

Doctors can be a PITA, especially when it comes to diagnosing less common problems. I read things on messae boards about people who get shuffled around to so many doctors, none of whom take them seriously, it's taken them years to get some results and finally some treatment. Sounds like you're going through a similar situation. GRRRR!

As for your meds, you'll get it sorted out soon, I hope. And then you'll feel back to normal. It sucks that you have to wait so long between blood tests, especially when you can feel that the dose isn't right. Are you able to call the dr. office and tell them your symptoms, maybe they could up your dose sooner?

 

[tara g]

My mom has it, they messed up her med amount so much that her thyroid basically quit working. She thinks it might be because when she was in her 30s, the one Dr. provided her with "black beauties" to speed up the thyroid and it made it worse in the long run. I hope it's not genetic, everyone thinks I have an overactive thyroid but in the last few years I've gained some weight (and not all muscle). They actually tested me for hypothyroidism a couple years ago because the Dr suspected I *may* have had it (a discharge that could have been a result of hypothyroidism, or just a piercing healing, they wanted to check to be sure) but they drew blood, I never heard anything about the panel (did it 2 days before my honeymoon, but they never called or left messages) - the next year at my yearly ob/gyn appointment I asked if they heard anything but they said my file didn't have anything about hypo in it so that no news was good news. I've thought about asking them to recheck since I'm not even sure if they really got results or not at the ob/gyn, since she looked slightly confused about me asking while flipping through the chart and saying no news was good news. I'd rather know sooner than later, because finding out later ruined my mom's chances of properly regulating it.

I'm sorry your feeling unwell lately

Hope everything gets better! Sometimes Drs can be a pain.

 

[calico2222]

I have a huge goiter (basically, my thyroid looks like swiss cheese) but instead of putting me on prescription meds, my doctor tried Kelp supplements first. And it's done the trick. Apparently, my thyroid is trying to work, but there isn't that much to actually do the job. The kelp gives it the extra iodine it needs to work harder. Kind of like adding fuel to the fire I guess.

OTC kelp can be found at any health store here...usually $5-8/180 pills. It only took 1 a day and its made a world of difference. I have more energy, I've dropped the weight I gain without really trying and I feel 200% better. From my understanding, it won't do any harm...what your body doesn't need you just pee out. It might be worth trying (ask your doctor first, of course).

Good luck. It amazed me how important the thyroid is for the rest of the body. It if isn't working right it can really screw up everything else.

 

[threecatowner]

Yeah, diagnosed a few years back. I was taking Synthroid, because supposedly generics can be "off" in dosage, and my insurance charges way more for name brand, too. It got to the point I was letting it run out and not refilling till I had money, which these days, is not often. Clearly, this was defeating the purpose.

I finally asked for generic - MUCH cheaper - but at least I'll take it with regularity.

I hate that a generic is KNOWN not to be as good as namebrand, but insurance companies don't care.

 

[ruthyb]

Originally Posted by calico2222

I have a huge goiter (basically, my thyroid looks like swiss cheese) but instead of putting me on prescription meds, my doctor tried Kelp supplements first. And it's done the trick. Apparently, my thyroid is trying to work, but there isn't that much to actually do the job. The kelp gives it the extra iodine it needs to work harder. Kind of like adding fuel to the fire I guess.

OTC kelp can be found at any health store here...usually $5-8/180 pills. It only took 1 a day and its made a world of difference. I have more energy, I've dropped the weight I gain without really trying and I feel 200% better. From my understanding, it won't do any harm...what your body doesn't need you just pee out. It might be worth trying (ask your doctor first, of course).

Good luck. It amazed me how important the thyroid is for the rest of the body. It if isn't working right it can really screw up everything else.

This sounds very similar to me when I had my goiter apart from my doctor wouldn't do anything without a fight, my blood tests came back "ok". We have different lab ranges over here which basically means you have to be seriously ill before they take notice or help you, unless you go private and see Dr Skinner which I can't afford, I have heard fab things about him though and I would love to see him, aparently he is the only doctor over here who has properely researched thyroid conditions and listens to the patient.
I ahte going to the doctors as it is but really all I have been told is that a thyroid condition is easy to treat, just replace the lost thyroxin and thets it I will feel fine once they get my dose correct. I do not believe this though, I'm worried incase I ahve to go again and have the rest of my thyroid removed, my surgeon didn't really tell me anything either.
I do take sea kelp and I believe it has helped me, I also take multivitiman tablet, gosh I am suprised I don't rattle in the morning

x

 

[jcat]

You really have my sympathy. Most of my thyroid was removed last Tuesday due to growths on it - I'd been treated for an underactive thyroid for about 25 years previously - and I've been warned that it could take months to get the new dosage right. The surgeon upped my usual dosage by 25%, said I would have to have my levels tested every four weeks for several months, and that the dosage would be gradually raised so that my body could adjust to the change and what's left of my thyroid doesn't "go crazy", e.g., swell. I'll hear what my regular doctor has to say about it tomorrow or Tuesday.

When I was first diagnosed with an underactive thyroid, the dosage was also increased in increments of 10 or 20 mg., and IIRC, it took about nine months before it was "right" and I felt good.

IME, the brand of thyroid hormone prescribed can make a huge difference. My health insurance insisted that my usual brand be changed to a generic that "was the same thing" just a few months ago, and I felt so cruddy on the new brand that my doctor had a fight with the insurance company about it; I was willing to pay for the old stuff myself, but he was angry about

just thinking about the bottom line.

 

[otto]

My goiter is still evident. I've had it all my life and doctors, way back to when I was a child were always taking my blood to test my thryoid, it wasn't until I started with this new doc a couple years ago that he insisted (after hearing my symptoms) on an ultrasound of the goiter.

Ultrasound showed a nodule, so sent me to a specialist for a biopsy. Biopsy shows no malignancy, so doc is treating me with a low dose of Synthroid (brand name) and I am doing really well on it.

I have looked into kelp, and other iodine supplements, but have read that results can be inconsistent, and there is no way to know for sure if the supplements are what they say they are. Levels can vary from pill (or capsule or whatever) to pill in the same bottle even.

So, as tempting as it is to go the "natural" route, and reduce the chemicals I put in my body, I guess for now I will stick to tried and true science.

 

[yosemite]

I was diagnosed in May and have been on synthroid since then. I haven't had any problems or side effects.

 

[ruthyb]

Originally Posted by Yosemite

I was diagnosed in May and have been on synthroid since then. I haven't had any problems or side effects.

How lucky you are, I am sure once my meds have been sorted I will feel more "normal" I am looking into alternative remedies aswell, I already take sea kelp, someone told me siberian ginseng is good.x

 

[cococat]

Originally Posted by otto

So, as tempting as it is to go the "natural" route, and reduce the chemicals I put in my body, I guess for now I will stick to... science.

Why not do both? Nori and Wakami probably have high levels of the good stuff and it is easy to incorporate those into dishes rather than supplementation.

 

[emrldsky]

I was diagnosed in 2008 with hypothyroidism. The assumption is that it's due to genetics, since my mother was also 26 years old when she was diagnosed (and that's the same age my grandmother noticed her symptoms starting).

I was on generic Synthroid for a month or two, and my TSH came back "normal." I still felt like crud but the doctor wasn't going to up my meds anymore (not to mention the jerk said, "I don't think you have it, but we'll test you anyway." All he left out was the patronizing pat on the head).

I discovered stopthethyroidmadness.com from someone on this site. BEST advice ever! I learned about Armour Thyroid, as well as doctors in my area who were willing to do a full thyroid panel (instead of just TSH).

I started seeing a holistic doctor shortly after that, and although he wasn't able to prescribe Armour (due to the shortage), he supplemented my Synthroid Rx with T3. The idea is to get the benefits of Armour without taking Armour. When it became available again, my doctor contacted the company and now carries a supply, even when the pharamacies around here are out.

My mom started seeing my doctor about 6 months after I did because she noticed just how much healthier I was, and my weight was DROPPING. I had gained 30lbs in about 4 months because of my thyroid issues, and with diet and balance, I was down to 140lbs (gained 20 back last year because I fell of the healthy-eating wagon).

Good luck!!!!

 

[jcat]

Ruth, it doesn't sound like a good idea to be taking supplements on your own while your doctor is trying to adjust you to the proper dosage, as the extra iodine is going to "falsify" the results of the thyroid panels. You might end up on too low a dose that way. I was told when first diagnosed decades ago to avoid seafood and iodized salt completely until the proper dose of thyroid hormone had been determined, and then to limit my seafood intake, and that same advice was given last week at the hospital. While it sounds logical that sea kelp would help in the case of mild hypothyroidism, you're well beyond that point, having had a goiter removed. Too high a dose right away can play havoc with your heart, blood pressure, menstrual cycle, etc., which is why the doctor is being cautious and you have to give it time. The initial dose prescribed after a thyroidectomy is based on your weight, and adjusted from there. How can the doctor adjust it properly if you're taking supplements with inexact amounts of iodine?

Originally Posted by Ruthyb

How lucky you are, I am sure once my meds have been sorted I will feel more "normal" I am looking into alternative remedies aswell, I already take sea kelp, someone told me siberian ginseng is good.x

 

[Primula]

Originally Posted by Ruthyb

I'm on thyroxin which is apparently according to my doctor all you can have over here.

My doctor diagnosed my thyroid condition a few years back and I take levothyroxin, which is probably what you take. (Apparently this is very common in older women.) It works perfectly and I can get 3 months supply for $6 at Walmart. I didn't know I had a thyroid condition until diagnosed, but I did have horrible calf pains. After taking levothyroxin for a while, pains disappeared. Apparently low thyroid can cause muscular pains.

 

[ruthyb]

Originally Posted by Primula

My doctor diagnosed my thyroid condition a few years back and I take levothyroxin, which is probably what you take. (Apparently this is very common in older women.) It works perfectly and I can get 3 months supply for $6 at Walmart. I didn't know I had a thyroid condition until diagnosed, but I did have horrible calf pains. After taking levothyroxin for a while, pains disappeared. Apparently low thyroid can cause muscular pains.

Yes it is levethyroxin, I was told by my GP that taking sea kelp is ok but now I'm worried incase it does hinder my results. My next blood test is next tuesday and I'm hoping to get a bit closer or at my dosage level now as its draining me. I just want to be normal again, its been a tough year.x

 

[Primula]

What dosage do you take? Doc started me on 40 mg. then changed to 75 mg.