I am confused about your medical care. Do you live in the U.S.? Having uncontrolled hyperthyroidism is dangerous. You don’t just stop your medications. What was it caused by? Graves Disease? I ask because having an auto-immune disease needs extra special care. Don’t read too much online, it WILL scare you. You need to pinpoint the cause of this so you can take care of it properly. You should be going to a doctor to get your labs every month and a half to see where your levels are and how to tweak it accordingly. Otherwise, what you are doing is a crap shoot. The OTHER wonderful thing about this is - IF you are not on top of this you CAN get Thyroid Storm. I haven’t gotten it but heard when someone does, it ain’t pretty. So, on THAT note I SUGGEST you pay close attention to getting your blood taken and watching what you eat. And look at the ingredients of your personal and cleaning products. EVERYTHING you come in contact with WILL have an effect on you.
I am sorry about your father-in-law. I understand family stress. BUT if you do not take care of yourself, how will you take care of your family?!
BTW, the reason why your doctor spoke with you is because thyroid issues are ABLE to kill you. (Heart arrhythmias) As soon as my neurologist saw my blood tests, he told me to see an Endocrinologist immediately. I saw her in 3 days. This is scary stuff! This is not just about your weight. Another BTW, if you think I look forward to getting a needle in my arm every 6 weeks - I deal with it. Yes, I was pissed off. Yes, I was angry I got this. But there is a time when you need to say, “Okay, what do I need to do to feel and be healthy.”
I won’t sugar coat this for you - go to the doctor and get your labs routinely. And, see your OB/GYN for a recent test for your hormones. Don’t take this as an order! Take this as I care about you and you need a little nudge. (Woman to woman) Take Care.

Hi tmredneck91:

I am thinking that the prescribed vitamin d is a D2, right? These don't work as well as D3 does. The D3 is closely related to when one goes out to the sun and the sunlight strike the skin to active the vitamin D. Also vitamin D3 is meant to be taken together with Calcium, Magnesium, and vitamin K2. Otherwise an imbalance is created with too much of only one of these vitamins causing problems and not having the other three there to do their part in properly putting into the bones and not cause calcification issues in the joints and organs.

You should see my kitchen counter with the oil vitamins lined up (and with two in the fridge) I have set out: vitamin K2, vitamin D3, CoQ10, Vitamin E, and the other two are: Wild caught Salmon oil (has vitamin A in it) and Vitamin butter (which is a combo of vitamin A, vitamin K2, and vitamin D3).

When I can, I go out in the sun. Where I live is usually nice during the winter months. :-)

{{{hugs}}}

Yes I live in the US. My family Dr when all this started wanted to RAI the thyroid and I refused he was not happy. I see the Endo but the most I ever got blood work since it was under control was twice a year. When I was on the meds my levels were good I just couldn’t lose weight. Yeah I weaned myself off after being so frustrated. Still learning aren’t younofdnthe meds? Yes it’s Graves but it’s also Hoshimotos too. Yes the Vi D is D2 which I questioned but she said it was fine even though I knew better. I’m going to Endo in March and other labs in Feb so we see what happens I just don’t want to be 200 lbs.

I am soooooo proud of you for standing up for yourself to your doctor and telling them no RAI. I did a different version of that - I told my radiologist who gave me my RAI scan and uptake that he doesn’t live in my body so he doesn’t get to decide if I should have an RAI 131. He tried to push it on me but ai would have none of that. I took a month to research what I would do to combat the GD. (Some doctors want their patients to do that procedure because it makes their life easier.) Hypothyroidism is easier to deal with than Hyperthyroidism. That’s what THEY think.

Yes, tmredneck91, I have been off MMI for approx. 2 weeks. In the back of my mind I am waiting for something to happen. I need to be positive and focus on that. I am gaining some weight but I believe my mild HYPO symptoms will normalize or go in the other direction (HYPER)

Did the doctor tell you the specifics on having 2 auto-immune diseases. I did not know you could have both. How does a doctor treat you with Graves and Hashimoto? Did the doctor tell you that you will always have the auto-immune disease and that it cannot be cured, just managed. That is why I see the doctor to keep a very close eye on it. Hey, I put out a lot of money for medical insurance - the least I can do is use it. :-). I have never dealt with anything like this before. It’s not a wound to put a bandaid on. It’s a lifestyle change. Anything can disrupt it.
When you speak of “normal” levels - there are people with subclinical thyroidism which can be in the normal levels but the person doesn’t feel well. MM states that the Free T3 and Free T4 should be higher than in the middle of that range for someone to feel better.
All I am trying to say is we have this disease that will not go away but can be calmed. I understand the frustration. You have had this 10 years. I have had this one year. This disease really scared me and still does. Having Graves Disease which has not been albated or surgically removed puts one in a position of having to be more vigilant in taking care of it. I have heard my share of stories from people who regretted doing it (RAI 131) plus you have to take meds for that the rest of your life.
I asked if you live in the U.S. because other people on the forum who lived elsewhere had limited medical resources. Being that you have had this for so many years, I (personally) would closely watch this with the meds, every month, get the labs and see if you can bring it down to a very small amount to keep your thyroid calm. On the other hand, find a nutritionist that specializes in auto-immune diseases to help you though the weight issue. I wouldn’t want to gain too much weight either. (And I am going in that direction)
I know my downfall - it’s bread. Time to stop.
I hope you find your sweet spot (with the meds) and lose the weight. Take Care.

So mmtzcass your saying that my levels for free T3 and 4 should be at the higher end of the numbers vs lower. I wouldn’t have thought my Jan numbers were Hypo.

Hi:

January of 2018 was too low. If you do a search and especially at elaine-moore.com, you will find references and articles she makes about why and such to have the FT3 at mid range and the FT4 at the upper third range. We feel way lot less thyroid symptoms and perhaps for many people, the weight issue is not as big of a problem.

{{{hugs}}}

Ok so I’m checking out Elaine Moore which I did hear about her several years but never looked her up. So my previous two blood tests I think I would’ve also been HypO.

Dec 2016- TSH 1.32
July 2017- TSH 1.03
Range 0.45 to 5.33

Dec 2016- T3 Free 2.5
July 2016 -T3 Free 2.5
Range 2.3 to 4.2

Dec 2016- Free T4- 0.78
July 2017- Free T4- 0.88
Range 0.40 to 1.64

So to me it looks like in Dec 2016 and July 2017 I would’ve also been HypO. Since I only get blood work twice a year what to I do to try to go to the upper end? Or even after the tests if I’m low do u just kick back the meds without kicking back too much? I guess I should be a pro at this with having it so long but I’m not. Honestly I just wanted to take my pill and forget about it. Ik now that was wrong.

Hi:

Yes, your Free Ts were low back then. Right now the current Free Ts are high.

Is there any way to ask doctor about getting monthly labs (going twice a year is too long in between) so that this way, while on the MMI, seeing any lab changes with both of the Free Ts right away that the MMI doses can be adjusted more quickly to keep things as balanced?

My doctor doesn't want me to get labs often so I pay out-of-pocket with Sonora Quest to get just only the FT3 and FT4 done (not TSH as it is not important when there are positive thyroid antibodies affecting how the TSH acts). Then this way I know if I need to niggle my wee amount of MMI that I take just to keep my FT3 at mid range and the FT4 at the upper third range.

As mentioned before, I work hard to avoid the food triggers along with the environmental triggers and yes, stress as well, to stop from my thyroid acting up.

Hope this helps you figure things out and doing the best as possible to stay balanced and proactive with thyroid health. Since I have been at it for over 18 years, I learned so much and did the best I could with what worked and what didn't. :-)

{{{hugs}}}

MM,
I heard that some PCPs and other doctors that are connected with HMO plans back off of taking too many labs because they have to keep the costs of health care down for the insurance company. THAT makes me sick. So far, since I switched to my new health insurance company, I have had no problem with getting all my labs. I pay my yearly deductible and co-paysments. I ask my Endocrinologist to do my labs every 6 weeks. (Even extra ones that I want to know about - in regard to deficiencies.)
My question to T is - Have you asked your doctor to do the labs more often or does the doctor say the insurance company will only cover 2 times a year?

I am still a beginner at this. Having it only 1 year. And both of you are veterans compared ot me. When speaking to my Endocrinologist, last time, about where my GD was....she said in normal range. I DON’T want to hear that since you are in normal range, I can no longer help you. (I didn’t hear that.) But there will be a point where I wil be going this alone when I haven’t used my medications for a while. I still want my labs every 6 weeks no matter what. I believe that since I have GD and whether I knocked it out (albated) or not, I will ALWAYS have this auto-immune disease and will always keep a close eye on it. I am trying to learn from all YOUR experiences. I have not come across a person who was diagnosed with GD that hasn’t fluctuated back and forth with the antibodies/antigens which has an impact on their life. At present, I am gaining weight too quickly. Whatever I am doing (eating gluten) OR my metabolism is slowing down because I am pushing towards HYPO, I need to correct this.
Not sure if anyone realized but I believe there are trade offs having this disease. One can lose weight while they have HYPER.....that might go along with life threatening symptoms like heart arrhythmias, high blood pressure, lack of sleep OR one can be zombie-like, lack focus and gain weight when HYPO. I wish we could pick and choose the symptoms. It’s been a couple of weeks and I am basically calm. Even lack of sleep has not made me cranky but the weight gain I am not happy with. So, I understand what you are going through, T.

PS I don’t think it is fair that since we are paying severely for medical insurance, that we don’t get the proper diagnostic testing. If you pay - request what is needed. If they won’t do it, go to another doctor.

Hi Still:

I have an HMO-POS type of medicare supplemental insurance along with my original medicare. So yes, unfortunately my doctor feels that as long as my thyroid levels seems to be doing well within the normal lab reference ranges, that once a yearly labs is it. I have been on medicare for 2 years now.

I do not mind really as I have understood well what needs to be done to balance my thyroid and avoiding triggers. I have been doing this for 18 years now. When I was still on my husband's insurance plan through his work, I didn't get labs that often back then anyway.

For someone who is new to the thyroid game or new to an autoimmune disorder, I should say; and not understanding what things needs to be done with balancing, avoiding triggers, stress, eating organic and non-GMO and the harmful products used in the household as well as personal, should, IMHO, get labs every four to six weeks while on the meds and for a period of time after meds in testing remission if the thyroid antibodies are still positive.

This way newer people with autoimmune disorders can work better with not fluctuating back and forth with their labs or yo yoing as it is called.

Being proactive is the key to keep it all together with all the tools we have been given as patients to succeed with our health. :-)

{{{hugs}}}

My Endocrinologist knows that I am very concerned about how my body will feel so she understands that I take every move, right now, with extra care. Months ago when she wanted to take me off abruptly, I was upset. Upset to be put on medication (and not take too much in the first place), then to be taken off so abruptly. If it wasn’t for taking the monthly blood labs, I wouldn’t know what was really going on. Thank you for holding my hand through this. Every day I am learning what I should and should not do.
Dairy, for sure, is NOT my friend and should be totally removed. No more pizza, no more Muenster or Swiss cheese, no more whipped cream cheese, no more butter and no more ice cream. I cannot believe how much I will miss drinking a glass of milk with ice.
Farewell, dairy. :-(
It’s things like that, that can trigger ill effects with my GD. I just want to be “solid” with my choices so I don’t repeat my mistakes where I do know it won’t work for me.
By removing this, I’ll let you know if the weight gain stopped or if I started losing.

Take Care.

Regarding my labs from the get go they did them every 4 months and then when I was "stable" then twice a year. Honestly, I never even asked for more because I just didnt know. I have decent insurance so I dont think that would be an issue but honestly would not do them more than every 3 months. I've been looking over all my labs since the get go and minus the first two or three when everything was wacky, I've always been testing on the low end and not the high end. Almost every appointment I would mention my weight as it started climbing upwards, why wouldn't the dr say anything even though the labs are in range that they were low and that may be why??
Right now, I'm restudying everything and will have a list for her when my next appointment is in March. Still Learning I really hope you achieve remission. :)

Thanks T. I hope so, too. When I took the MMI, there was a period where I was soooo calm. Nothing bothered me. I slept well. The ringing in my ears calmed down. I was so happy until everything seemed like it slowed down too much.....mild zombie like thoughts and weight gain. Those are my 2 HYPO symptoms. Now, being off the meds, I am yo-yo-ing with HYPO-HYPER. Sleep issues, ringing in ears, being hungry, mild heart palpitations. Not happy with it. Thank goodness, I still have that basic calmness that not every little thing makes me anxious.

T, didn’t mean to sound too pushy. Keeping a closer eye on labs, like MM recommended, allows you to see what the triggers the thyroid numbers. It gives you a map of where you stand. If the insurance company will pay, take advantage and give yourself a better way to adjust medications to balance you out. You deserve that. It might help with the weight issue. (Personally, I’d ask about the FSH and LH hormones blood labs - when I went into peri-menopause and then menopause, it was harder to lose the weight.)
One last thing, I asked my doctor to find out about Zinc deficiency - I took the lab and found out I was low. I was able to correct that with supplements. Take Care.

Hi all:

Many of the doctors that treat patients with thyroid disorders probably do not actually have any thyroid issues themselves. They do not seem to understand how to properly read labs to dose correctly and just feel that anywhere within the lab reference ranges for both the FT3 and the FT4 that their patients, can feel fine there at.

I recall of a patient's doctor from the board I moderate at a few years ago, that the patient came on asking Qs on how to feel better because the Free Ts were not in the 'right' places. The patient's doctor had had an RAI and was taking replacement meds. I imagine that the doctor likely struggled with getting her own thyroid levels of the Free Ts in the 'right' places and probably could not effectively able to help this patient to figure out where the Free Ts should be to avoid as many symptoms as possible.

I wonder how many of the doctors out there have compared any normal thyroid labs of people with no thyroid issues with the ones with thyroid issues? They could then see from the normal thyroid patients on where the FT3 and the FT4 are falling for them to tell the thyroid patients where to aim the levels at.

{{{hugs}}}

If the FT3 and FT4 is at the higher range will there be any symptoms or does that depend on the person. Since I"m back on the meds I can tell the Hyper symptoms are lessening but I'm trying to figure out when to cut back so I dont gain the weight I lost. Since I now know to keep them in the higher range I will aim for that.