# Kaiser frustrations...Suggestions?



## Mike's Girl (Nov 10, 2011)

I am writing this letter as to provide documentation about Kaisers inaccurate process of testing in regards to people known to already have Grave's Disease. It has come to my attention that Kaiser only tests patient's blood samples for TSH levels. It is commonly known in the Graves disease community that checking levels of TSH only is NOT a good indicator of thyroid hormone levels in those individuals with an existing Grave's Disease diagnosis. The reason that I am writing this letter is to draw attention to this inaccurate procedure and why the testing process should be different for those with existing Graves Disease. They should be checking Free T3 and T4.

First off, I will tell you the story about what drew me to write this letter. It all started with a routine physical at the Santa Clara Kaiser Permanente Facility. My boyfriend who has had Grave's Disease for over 25 years, had R.A.I, is no stranger to the routine blood tests that go along with having the disease and up until his visit to Kaiser in August 2011 was very well balanced and doing well on his current dosage of Synthroid. Just to add little history about him, he moved from the Carson City, Nevada area in December of 2010 to Santa Clara, California. He started a new great job here in December and eventually qualified for benefits with Kaiser through his job. I being the caring girlfriend told him in August that he should make an appointment to have a physical, since he had insurance, so he did, and this is where the saga began.

He went towards the end of August and received a clean bill of health, which we both expected since he is in good physical shape, and takes good care of himself. The doctor told him that he should have his thyroid levels checked and he agreed of course, so he did. Mind you, for the last 5 years, he has been very balanced, i.e.: no weight gain/loss, no mood swings, and good energy level. We were very surprised when his Doc called and said that his levels were a little high and that she was going to change his dose from 200mcg to 175. We didn't really think much of it; after all, she is the Doc and should know what she was talking about. So he filled his new prescription and went about his business. The first couple weeks went by and he complained about being a little dizzy and tired, we both talked about it possible being from his dosage change, but he figured he would stick it out for a bit thinking that he just needed an adjustment period. Well here were are, it's mid November 2011 and for the last month his dizzy spells have gotten much worse, so much so I had to go pick him up from work, he went from working out 5 days a week in August to slowly over the last few months maybe working out once a week. His energy levels are so low his is constantly complaining about feeling tired. He has gone from being emotionally stable to being moody and irritable, somewhat depressed, and now having the brain fog, At this point it would be clear to anyone who knows about Grave's disease that all of these symptoms are a direct cause of inadequate levels of thyroid hormone in his body. Everyone but his physician it would seem.

So on Monday Nov 7th is when I had to pick him up from work, because he got so dizzy and upset he didn't want to drive. He went in on Tuesday morning to see his Doc and she sent him to have an EKG (Normal), sent him away with paperwork for instructions on Vertigo exercises, sent him to the lab for blood work to test his thyroid levels, referred him to psych for a mood disorder, and ordered him to go back for a stress test on Thursday. (Also normal) This is a man without psychiatric problems people. He has Graves, like I said before, anyone who knows anything about Graves's disease knows all about these symptoms. So let's backtrack here just a second, he had blood drawn on Tuesday, on Wednesday, Kaiser sent him the results electronically. We both wanted to have a look cause we were both sure that his levels would be way off. Surprise, surprise, they only tested for TSH, not T3 or T4. So all we know is that the first time he went for his physical his levels were about 1.5 and he was feeling good, now his levels are around 1.0 and feels terrible. The magic number 1 is not a perfect target for everyone, and without knowing his T3 and T4 levels there is really no way to find out what changes have gone on with his numbers.

So yesterday I faxed a release of medical record form to his old Doctor in Carson City so that hopefully we can get a good history about where all of his numbers have been in the past. I will be getting on the phone with Kaiser here in a little bit to find out why on earth they would not do a full thyroid panel on someone with known Graves and who is already receiving Synthroid or Levothyroxine. Tuesday I suggested that he go ahead and go back to taking his 200mcg pills since he had some left over from before the Kaiser Dr switched him, he has started but we probably wont see any change for a while since it takes time to build up in his system. His symptoms have been gradually getting worse since late August which lines up perfectly with the fact that it usually takes 6 to 8 weeks for Synthroid to stabilize in your system. Another thing that I considered was that for the last ten years he had been getting his prescriptions filled at Costco and this last time they were filled at Kaiser, so that is two things that had changed, pharmacy and dosage. I will let you know what happens after I talk to Kaiser. I read somewhere on another forum that the Dr. has to specifically order Free T3 and T4, but in any case, I think that he should be looking for a new Dr just because the one he has failed to notice the correlation between reduction of his meds and his current issues, even though we brought it up as realistic cause of his symptoms.


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## Octavia (Aug 1, 2011)

Welcome to the forum!

Can you do me a quick favor, and go back into your post using the "Edit" function, and break it up into smaller paragraphs? My vision isn't the best, and it will help me be able to read it.

Thanks!


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## Andros (Aug 26, 2009)

Mike's Girl;37217 said:


> I am writing this letter as to provide documentation about Kaisers inaccurate process of testing in regards to people known to already have Grave's Disease. It has come to my attention that Kaiser only tests patient's blood samples for TSH levels. It is commonly known in the Graves disease community that checking levels of TSH only is NOT a good indicator of thyroid hormone levels in those individuals with an existing Grave's Disease diagnosis. The reason that I am writing this letter is to draw attention to this inaccurate procedure and why the testing process should be different for those with existing Graves Disease. They should be checking Free T3 and T4.
> 
> First off, I will tell you the story about what drew me to write this letter. It all started with a routine physical at the Santa Clara Kaiser Permanente Facility. My boyfriend who has had Grave's Disease for over 25 years, had R.A.I, is no stranger to the routine blood tests that go along with having the disease and up until his visit to Kaiser in August 2011 was very well balanced and doing well on his current dosage of Synthroid. Just to add little history about him, he moved from the Carson City, Nevada area in December of 2010 to Santa Clara, California. He started a new great job here in December and eventually qualified for benefits with Kaiser through his job. I being the caring girlfriend told him in August that he should make an appointment to have a physical, since he had insurance, so he did, and this is where the saga began. He went towards the end of August and received a clean bill of health, which we both expected since he is in good physical shape, and takes good care of himself. The doctor told him that he should have his thyroid levels checked and he agreed of course, so he did. Mind you, for the last 5 years, he has been very balanced, i.e.: no weight gain/loss, no mood swings, and good energy level. We were very surprised when his Doc called and said that his levels were a little high and that she was going to change his dose from 200mcg to 175. We didn't really think much of it; after all, she is the Doc and should know what she was talking about. So he filled his new prescription and went about his business. The first couple weeks went by and he complained about being a little dizzy and tired, we both talked about it possible being from his dosage change, but he figured he would stick it out for a bit thinking that he just needed an adjustment period. Well here were are, it's mid November 2011 and for the last month his dizzy spells have gotten much worse, so much so I had to go pick him up from work, he went from working out 5 days a week in August to slowly over the last few months maybe working out once a week. His energy levels are so low his is constantly complaining about feeling tired. He has gone from being emotionally stable to being moody and irritable, somewhat depressed, and now having the brain fog, At this point it would be clear to anyone who knows about Grave's disease that all of these symptoms are a direct cause of inadequate levels of thyroid hormone in his body. Everyone but his physician it would seem. So on Monday Nov 7th is when I had to pick him up from work, because he got so dizzy and upset he didn't want to drive. He went in on Tuesday morning to see his Doc and she sent him to have an EKG (Normal), sent him away with paperwork for instructions on Vertigo exercises, sent him to the lab for blood work to test his thyroid levels, referred him to psych for a mood disorder, and ordered him to go back for a stress test on Thursday. (Also normal) This is a man without psychiatric problems people. He has Graves, like I said before, anyone who knows anything about Graves's disease knows all about these symptoms. So let's backtrack here just a second, he had blood drawn on Tuesday, on Wednesday, Kaiser sent him the results electronically. We both wanted to have a look cause we were both sure that his levels would be way off. Surprise, surprise, they only tested for TSH, not T3 or T4. So all we know is that the first time he went for his physical his levels were about 1.5 and he was feeling good, now his levels are around 1.0 and feels terrible. The magic number 1 is not a perfect target for everyone, and without knowing his T3 and T4 levels there is really no way to find out what changes have gone on with his numbers. So yesterday I faxed a release of medical record form to his old Doctor in Carson City so that hopefully we can get a good history about where all of his numbers have been in the past. I will be getting on the phone with Kaiser here in a little bit to find out why on earth they would not do a full thyroid panel on someone with known Graves and who is already receiving Synthroid or Levothyroxine. Tuesday I suggested that he go ahead and go back to taking his 200mcg pills since he had some left over from before the Kaiser Dr switched him, he has started but we probably wont see any change for a while since it takes time to build up in his system. His symptoms have been gradually getting worse since late August which lines up perfectly with the fact that it usually takes 6 to 8 weeks for Synthroid to stabilize in your system. Another thing that I considered was that for the last ten years he had been getting his prescriptions filled at Costco and this last time they were filled at Kaiser, so that is two things that had changed, pharmacy and dosage. I will let you know what happens after I talk to Kaiser. I read somewhere on another forum that the Dr. has to specifically order Free T3 and T4, but in any case, I think that he should be looking for a new Dr just because the one he has failed to notice the correlation between reduction of his meds and his current issues, even though we brought it up as realistic cause of his symptoms.


Good grief. What was his TSH when she lowered his dose? And to not run the FREES at least one time to see where all that was at is pretty darn bad.

Just imagine, years of hard work and regimentation for your boyfriend to have done so well all of this time and one doctor comes along and blows the whole deal.

No doubt the both of you are hip hopping mad.

We will stay tuned to find out the rest of the story and in the meantime we all wish for your boyfriend to get back his former self.

Welcome to the board and if nothing else, we do "listen!"


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## webster2 (May 19, 2011)

If you can't find an "in network" provider that will test the frees do you have the option of paying a higher co-pay and going out of network to a provider that will? I am not familiar with Kaiser, sorry.

If that is not an option, can you use one of those self test sites?

Would his former provider send you a referral to a local doc that would test the frees?

How awful that he was feeling great and then be allowed to deteriorate to a nonfunctioning person because his Graves is not being treated properly. I feel terrible for both of you.


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## Mike's Girl (Nov 10, 2011)

I just felt really bad because If it wasn't for me, he wouldn't have gone to see the clueless doctor in the first place. Additionally, if anyone in my area has knowledge of a Kaiser Doctor that has experience in treating Grave's patients, we are all ears. I will post the TSH levels from August and his current results when I get home later. I dont remember his Kaiser password at the moment. His Doctor in Carson City on the otherhand was great, Dr. Jones...incase anyone is interested.

We are waiting to recieve his full record from the last 15 years or so in the next 10 days, we are both interested to go back and track all of the changes through out the years. Sometimes its difficult being the significant other of a Grave's patient, as we all know. I always try to do my best at supporting him, and being his best advocate when he is finding it difficult to do himself.

He hates feeling this way....he is frustrated, dizzy, says he "feel's like he is not in control of his life", emotional, and exhausted. As hard as it is for me feeling helpless that I can help make things better, I can't even start to understand how terrible it must be for him.


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## Octavia (Aug 1, 2011)

Oh....wow....I just hate seeing stories like this. You know, I just have to wonder why a doctor would not look at this situation and take the path of least resistance first when looking at what the problem might be, which in this case would be the change in meds.

Don't feel guilty for trying to help your boyfriend stay healthy! You had excellent intentions, and how would you have known that it would go downhill.

He'll get his levels back... Kudos to you for being so caring!


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## bigfoot (May 13, 2011)

First off, he's lucky to have you in his life! (And I'm sure you feel the same way.) Kudos to you for running interference and pushing for answers from Kaiser. Unfortunately, Kaiser doesn't exactly have the best track record as far as HMOs go. I get the impression they are very much into cost savings, which is fine, but sometimes that's going to be at the patient's expense.

While I can't recommend anyone there in Santa Clara, I do know of a good endocrinologist that a relative has seen in Petaluma - his name is Dr. David Chappell. And if that is too far, perhaps his office can recommend someone closer to you.


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## Mike's Girl (Nov 10, 2011)

Thanks for the name drop, I will call his office and see if he can refer us to someone in our area. Petaluma is about an hour and a half away. The thing about Kaiser and cost savings is that it doesn't make sense to not test someone's T3 and T4 who already has Grave's, because now they are going to be paying for two sets of labs. They don't know it yet, but after I talk to the patient relations department, they will be comping both sets. :tongue0013:

Up until this point in time I have never had any problems with Kaiser, as a matter of fact, a few years ago when I was in a poor financial spot, they granted me Medical Financial Assistance, which pretty much made my 5,000 hospital bill free, and they gave me an additional 6 months of free coverage for my follow ups. I still had to pay my premiums, but I would have been up poo creek without it. I actually didnt talk to Kaiser yet, I am going to have my boyfriend email his doctor first and request that she order the Free T3 and T4 first. I am also going to have him request for her to fill him another script of 25mcg's so that he can go back to the even 200mcg's. I will keep you guys updated.

I feel like our biggest obstical is the fact that when we mentioned to his doctor that we believed all this was occuring because the drop in dosage, she completely discounted that as the possible clause.


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## bigfoot (May 13, 2011)

Mike's Girl;37239 said:


> I feel like our biggest obstical is the fact that when we mentioned to his doctor that we believed all this was occuring because the drop in dosage, she completely discounted that as the possible clause.


It's easy to blame the thyroid for everything, even I am guilty of that. Each person brings their own set of circumstances with them. But here you have someone who clearly has had this problem for a long time and has been treated successfully for years. Something tied into the endocrine system has gone haywire with the medication adjustment. It sure would be nice if his doc would do a little more investigating to find out what went wrong.


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## Koof (Nov 9, 2011)

I have Kaiser and wanted more testing after my TSH came back normal - I think I'm hypo but w/o abnormal TSH they won't do more testing. When I asked my doctor (a GP) about further testing she said she can't order more - only and endo an order others!?!

Is his doctor a GP, internist or endo? Perhaps you can see a different doctor (if an endo) or get a referral?


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## Mike's Girl (Nov 10, 2011)

His doctor is a GP, but with Kaiser, you can pick any doctor to be your primary physician without a referall We did that over the weekend. We picked an endo for his GP. We shall see. Only time will tell.


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## Koof (Nov 9, 2011)

Oh, I didn't know that! I'm switching insurance in January, but perhaps I'll change my PCP to get an endo appt  Thanks!


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## CorralesNM (Nov 6, 2011)

This is not about your boyfriend's situation regarding Graves but rather about Kaiser. I have heard very very little that is positive about that HMO. Based on experience, the organization tends to pride itself on gatekeeping and is notorious for not referring patients to specialists.
Good luck to both of you.


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## Mike's Girl (Nov 10, 2011)

With Kaiser, patients don't have to be refferred to a specialist. You just go online and chose a doctor that is accepting patients. It can be an endocrinologist, ENT, Internalist, Cardiologist, OBGYN, GP...etc. Many people do not know this. I have actually had no complaints about Kaiser up until this point. I just think that he had a GP that didn't know much about Grave's. So we switched him and he has an appointment now for an endo.


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## Mike's Girl (Nov 10, 2011)

At Koof, yes! Switch to an endo! Let me know how it works out. When I talked to Kaiser patient relations the other day the lady I spoke with was very helpful and even told me which doctors were liked because of their bedside manner or the one's who were less personable and more clinical. I explained to her that what we felt was most important was having a Dr who was very knowledgeable about Grave's and who will listen to their patients concerns. She narrowed it down to 3 docs at our Kaiser location. She said that their survey's are very detailed and they allow them to match patients to Doctors very well. We chose one of the 3 she recomended. We will see how it turns out.


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## Koof (Nov 9, 2011)

Hubby sick of my complaining and he called today and managed to get a referral for an endo so I don't have to switch PCPs. There are no endos at my local center, so it makes more sense to keep her for sore throats and other illnesses. The closest endo is about 15 miles away, but online reviews say he deoesnt listen to patients so I will opt to travel a half hour/45 minutes to see drs who look better. Hopefully it will all work out and I'll get an appointment before January.

I'm so glad your bf will get to see someone who (hopefully) knows something about Graves!


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## Serendipity (Jul 5, 2011)

Thanks for the info on Kaiser! I am currently trying to wade my way through my GP brushing off my many Hypo symptoms and elevated TSH. I couldn't believe she had me fill out a form about depression and talked to me about stress eating and weight gain.


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## Mike's Girl (Nov 10, 2011)

News update on my hunny. So the day that I picked him up from work because he was dizzy and emotional, I told him to start taking the left over 200mcg Synthroid he had. Now its 10 days later and last night was the first night that he said he felt normal since the End of August. He sent me a text at lunch and he said he feels good at work today and that he hasn't stared into space or gotten dizzy once today. It is such a happy feeling for me that he has seemed to improve in just two weeks. Which shouldnt be a big suprise since when they lowered his dose in Aug that he started feeling bad within two weeks. I have done alot of reading on this board about adjustment periods, and it seems that he is fairly lucky when it comes to adjusting rather quickly.

@ Serendipity I hear you. When he came home with his paperwork and it said that he came in and has a mood disorder and was reffered to psych, I was beyond angry. That was the first indication that his GP knew nothing about Grave's. As far as his weight, he went from 205lbs last Dec (2010) to right around 175 now. He had been working out everyday...but the last two months his energy level tanked, he had become increasing depressed, and dizzzzzzzy. I really wish you luck with your doctor. We decided that if we dont get the attention we need from his current doctor that he will just take a Friday off and drive to Nevada to see his old doctor, who he had for 10+ years and listened to him. We would have to pay out of pocket, but with as many copays and trips to the lab at Kaiser when they didnt run the tests they should have the first time, it will probably cost about the same.

@Koof I dont know what area you are in, but, 45 minutes doesnt seem like a long way to be treated by someone who will listen to their patients. Doctors just dont give people enough respect when it comes to them knowing their own bodies. They just look at numbers....


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## Koof (Nov 9, 2011)

Well I got an appoint through Kaiser with what looks like a decent doctor! The appt is at 8 am though, so my drive will be more like an hour+, but worth it! I'm in between Washington DC and Baltimore, so 45 minutes drive (not counting rush hour traffic) is pretty far, with such a dense population of doctors but if she is good, it will be more than worth it! I' m glad your bf is feeling better - hopefully the trip to his NV doctor will make him feel great and it will assure him that he is fine, just his meds were messed up by an ignorant doctor.


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## bigfoot (May 13, 2011)

Mike's Girl;37854 said:


> Which shouldnt be a big suprise since when they lowered his dose in Aug that he started feeling bad within two weeks. I have done alot of reading on this board about adjustment periods, and it seems that he is fairly lucky when it comes to adjusting rather quickly.


That is excellent news! Yes, adjusting to any change (up/down) in thyroid meds is definitely a roller coaster ride. Hope things continue to get better!


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## RyanK (Jul 6, 2017)

I live in Northern California and am having a thyroidectomy tomorrow at Kaiser Roseville. I have had Kaiser insurance for most of my adult life and would share my experience with them has been entirely positive. My Primary Care Physician (PCP) has always run every test reasonable, and even some tests which were likely unnecessary but he wanted to be on the safe side. When I asked for a test because of online research, I was either given a reasonable explanation or the test was ordered.

With respect to specialists, as others have mentioned you can make an appointment with an endocronologist or any specialist you wish. If at any time you are unhappy with your PCP you are free to change to another doctor. If one doctor or specialist will not order a test you feel is necessary, you can simply see another doctor within Kaiser. There are numerous Kaiser facilities so you may at times choose to visit one further from your home to see a preferred doctor.

I realize the original post is 6 years old, but I wanted to add my experience in case it helps others.

Kind Regards


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