[cathycnm November 26, 2008 at 2:47 am Post count: 284]

#1075209

Wristmaker and Ski – High cholesterol and LDL can be associated with hypo thyroid – and can lead to athrosclerosis. This is why even sub clinical hypo should be treated. Or so I was told at a medical conference this fall. My own cholesterol jumped from 180 to 220 this fall, with better diet and exercise this year. My LDL also jumped quite a bit. But my numbers are nothing like you are reporting Wristmaker. That makes me wonder if you have some other genetics feeding into this. I totally agree with Ski – you need to get all this reviewed by a physician who can manage you.

So, you still have no insurance? Is money still a barrier for you? Cathy

[Ski November 26, 2008 at 5:29 am Post count: 1569]

#1019949

Hi wristmaker,

Okay, third time is the charm. I’m sorry, our home network has crashed twice on me while I was trying to write this. I’ll be brief to make sure I get this posted.

Here’s your original post:

Hi all, I am new to this web site and I need help. I am at my wits ends with worry. I found out I had Graves disese in August of 2004. This was after I was laid off from work and have no insurance. So I have been to a couple of free clinics to see a doctors (endo).I went last week to local clinic and had some blood work done, cholesterol was 413 last check (in July) now its 347, with triglycerides at 614. I think this is due to not taking meds (tapazole) right. Since then started taking them like I am suppose to and now my TSH (whatever that is) is 89.566, was told to stop all meds immediately. I have been so stressed out I think the top of my head is coming off. Can someone explain the numbers to me. T4 was 1.2L, T3 uptake 25 and free thyroxine index was 0.3L.I really think I am losing my mind. Please someone help me.

I’m not sure I’ve got this right ~ have you been managing with "free clinics" to get your medications for more than four years? Without one person managing your overall thyroid hormone levels, this must have been very difficult for you. It’s time to find a specialist and lay out all of your test results and history and have a very frank discussion. Take your test results (the lab must give you a copy, they’re yours), take all of your questions, and perhaps take someone else with you for support and a "second set of ears." It can really help.

TSH is thyroid stimulating hormone, released by the pituitary in response to thyroid hormone levels in the blood. If the pituitary senses too much thyroid hormone, it sends very little TSH (signalling the thyroid to release very little thyroid hormone). If the pituitary senses too little thyroid hormone, it sends out a lot of TSH (asking the thyroid to release more, please). So the two have an inverse relationship. When one is high, the other should be low, and vice versa. Take a look at your test results and see where "normal" is, and where yours fall. It should make the picture clearer.

I haven’t heard of Graves’ or Tapazole being connected to any kind of changes in cholesterol or triglycerides. That’s definitely something to bring up with the doctor.

Please do all you can to learn about what’s going on ~ we have recommended books here, and the posts are also full of good info. Ask about anything you can’t find. We’re here to help. You will get there. It’ll take time, but you’ll get there.

[wristmaker November 26, 2008 at 6:03 pm Post count: 4]

#1075210

Yes money is a barrier. My husband and I live on his disability. We live in a very small community too. Have to travel for 50 to 60 (one way) miles to see a specialist.

So does this mean I no longer have Graves disease, or can my thyroid levels go hyper on me again. My eyes still bulge out especially the left one.

The high cholesterol runs in my family! I guess just another thing for me to worry about.

Yes Ski, I have been managing with "free clinics" for the past 3 years. They give me a years perscription at a time. I also take Inderal for fast heart beat. I really appreciate your comments and they have somewhat helped me. I wanted the numbers explained to me. Because I don’t know what they mean.

Thanks all for any and all help.

[cathycnm November 26, 2008 at 7:19 pm Post count: 284]

#1075211

Wristmaker – Financial barriers are difficult, esp when we live rural. Have you looked into Medicaid?

I think this discussion board cannot get into talking about lab results. I will say that once you have Graves – you have it. However, the over or underactive thyroid can be treated. I might suggest a web search on a reputable site – like webmd – to look up the norms on the various labs. However, remember that different labs may have slightly different values. This is why it is important for you to get in to see someone who can follow you over time. Do you use the same free clinic each time? If so, is there anyone there who can work with the endo(s) as a primary care person? Even a nurse practitioner – someone who can follow you over time and can consult the endo(s) when your labs are off. Or maybe you see the same endo each time. I don’t know your system but it may benefit you to have someone on your case who is following you over time. This helps prevent errors, etc. Cathy

[mamabear November 26, 2008 at 8:01 pm Post count: 484]

#1075212

I agree with Cathy, someone should be following you on this. Graves does not go away. You have it your entire life, it is an autoimmune disease. There are times that it will be flaring up and there are times that it will hopefully be in a remission state. (that doesn’t happen unless you are without meds and in normal range for 12 or more months). You seem to have been taking too much of the Tapazole thus causing you to become hypo but it doesn’t mean that your Graves is cured. You NEED to seek help with Medicaid. They will help you and your husband and since he is on disability you will have to do what they say but you will also be eligible to get the benefits of medicaid, which is extra money for food and they also have a separate section for health care. You NEED this so please look into it. I am not sure what state you are in but Google search Medicaid and your states name and see what pulls up. Call them and ask them who you need to call. If you have questions please ask them and have them repeat what you dont understand. Graves Disease is nothing to joke with and you being Hypo isn’t good.

In the meantime you need to go back to the clinic and get tested again, ask them what lab they use and you ask for a COPY of the results in your hand as well or mailed out to you. Those are YOUR results you have a right to them.

If you need help with medicaid dont be shy ask, send me a PM if you want to about it. There is nothing to be ashamed of and no such things as stupid or silly questions.

Them giving you Tapazole a year at a time isn’t helping control it and since they are testing your dose they are giving to much and causing other things to happen so you need to be seen more often. Getting on Medicaid can help with seeing a dr. at times that you need to see a dr.

[wristmaker November 29, 2008 at 4:32 pm Post count: 4]

#1075213

Just to let everyone, who has been so kind to post and help me, I am seeing a nurse practitioner next week for a follow-up on my labs and appointment I had the 19th of November. Prehaps things can get better for me then. I know right now that this "Graves" has me really upset. But I know that I will get better. Thanks so much to everyone who has posted for me. All the information has been of great help.
Thanks a bunch.
wristmaker

[Bobbi November 29, 2008 at 7:30 pm Post count: 1324]

#1075214

Hi, Wristmaker:

Just a comment about what tapazole (and any other antithyroid drug) does: It provides a chemical block that interferes with the chemical process by which iodine is turned into thyroid hormone inside the thyroid cells. If you take too large a dose, you could go hypothyroidl; if you take too little of a dose, you would remain hyperthyroid. So there is a balancing act that goes on when taking these meds. You and your doctor need to find the Goldilock dose — the one that is "just right" at any given point in time. Since your TSH went so high, stopping the med, temporarily, makes sense. It does not necessarily mean that you are "well" again, however.

Also, the disease we have is caused by antibodies, which can rise or fall in number for no well-understood reason. So, sometimes, we experience lower levels of the antibodies than others. This will necessitate a change in the dose of antithyroid drug you might need. It does not, however, mean that the disease has gone away.

That is one of the reasons why it is so important for us to have some consistency in doctors, if possible, and also to get regular blood checks to determine just where our levels are at. Barring consistency in doctors (or nurse practitioners), the suggestion that you get a copy of each and every blood test result and keep them in a file, can be helpful. Then, any new doctor would have immediate access to that history.

I do hope you are feeling better soon.
Bobbi — NGDF Online Facilitator

[cathycnm December 1, 2008 at 12:42 am Post count: 284]

#1075215

Wristmaker and Ski – I agree on keeping copies of labs. I find it much easier to hand carry them to each doctor than to rely on med records at the offices. Plus – I can follow my own progress better. I also can take them with me on long trips in case I have some med emergency while away. Instead of some ER doctor starting from scratch, there would be a clear path for him/her to follow. Knock on wood I don’t need an ER any time soon.

I also keep a copy of all the meds I am on via a med alert bracelet and a list kept in my home. I don’t always have family around so I would want EMS staff to know about the Graves, etc. It is another one of those consistency things.

I will say this is the worst cough/cold I have had in years! I feel like I am living on cold meds for almost a week now. (I am on my 3rd bottle of Theraflu since RAI in August and that stuff usually lasts me until it outdates and I toss it!) It is just amazing to me to have these changes to my physical health timed with the thyroid regulation. No doubt, a connection. I only wish I had more support from my work and was less isolated. Sometimes I think they think I am making this stuff up – maybe I am still a bit depressed though, so I may not be thinking it though as positively as norm. Honestly, you could probably count my sick days on 10 fingers for my whole career – and I am in my 50’s. I have not missed days with this – but I also am limited in doing more than full-time – which they had gotten use to as the norm. I wonder if they think I am lazy – just shows how isolated we are if they don’t know me better than that. The social isolation concerns me because it also impacts immunity. What a lesson this journey has been about many things! Cathy

[kallikat December 1, 2008 at 3:05 pm Post count: 29]

#1075216

Cathy – I have been sick a lot, too, since RAI 15 months ago. And I just missed work 2 weeks ago due to a virus – I just couldn’t get out of bed. Nyquil is my "drug" of choice these days! I’d rather sleep through illness than feel it. I never, ever took sick days before all this. Luckily, I have good relationships with management here and they "follow" my progress. Every time they hear something about Graves they mention it. When I had RAI, they were very concerned about my radiation level and didn’t want me in the office – so it was easy to take a few days off for that. There is a lot to be said for working relationships, indeed. My husband also works here, in management, so even if they wonder whether I’m making it up, it will never be said out loud, I don’t think. But I honestly don’t think I’ve ever given them reason to feel that way. I believe if you’re an honest person and a good employee, then your actions and history should let your supervisors know the truth. Hang in there, Cathy. We’re here with you!

Wristmaker – I’m so very glad you have an appointment to follow up with your lab. Graves symptoms can change so often that a year’s prescription just cannot be right that entire time. When I was on tapazole/methamizole, I had labwork every 6 weeks, and my dose went up or down each time. Since RAI I’ve been on synthroid, and I have lab done every 30 days, and my dose always changes with that, too. I also have my cholesteral checked every other month – because my Dr says thyroid problems can effect it. It bounces up and down, also.
You will definitely feel better once you get things regulated properly (which could mean constant med changes).
I lived in a small rural town for 39 years before moving to the city, and I do know how difficult that is. I also know that some free clinics use a rotating staff, so it’s impossible to see the same person each time. I hate that you are in that situation, but hopefully the nurse practitioner you’re going to see will help you and work out payments until you can get medicaid or disability filed. You obviously have internet access, so use it! Read all of the posts on this site, then google graves disease and read it all. Doctors can tell you all you need to know – but they rarely have time. I find it’s easier to educate myself and make a list of specific questions to ask my Dr. I pray for you and wish you only the best of luck and peace of mind. Please take care of yourself.

[Ski December 1, 2008 at 6:11 pm Post count: 1569]

#1075217

Just a quick note to add ~ when you Google "Graves’ Disease," you will find many sites, some that are not committed to providing accurate information, just to promoting their own brand of snake oil. Make sure that you are looking at a site (like ours) that subscribes to (and earns) certification by medical organizations.

[cathycnm December 1, 2008 at 8:20 pm Post count: 284]

#1075218

Kallikat – Thanks for the words. Honestly – the few folks on my campus (who are campus admin and not from my department) have been great – and I have asked them to reflect impressions to folks as they can. It is so easy to get the wrong idea when we don’t really know people. My work in business coaching says good managers know their people well – huge motivator. Still, my boss is spread too thin – and academia is way behind the time with business strategies. I ponder how to improve my support networks. How awesome that people tell you about what they see about Graves – I can’t fathom. I hear my bosses voice become strained when I mention it in passing. BTW – maybe I will take on a project here – I would love to hear from those who felt they had a positive, supportive response from co-workers and bosses. What were those responses? What made them feel supportive? I may put the info on my own web site to help others! Anyone can email me ideas through this site!

Wristmaker – Ski is 100% right on with what she said. I even found a life coach site where she said she "chose" Graves and that she then chose to cure it – in her mind. That is just harmful for those who know better. I also do life coaching – but trained with well-known psychologists. I say we can all learn to be more resilient – but to think we can cure ourselves with the right attitude is not correct. We can’t change that. Another good way to learn more is the reading list on this site – it you can get books used off someplace like Amazon it is well worth it.
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