Discussions that mention vasotec

Thyroid Disorders board


Hi Everyone,

For those of you that have been following my ‘saga’ ~ you may remember that I had an appt with an endocrinologist yesterday – FINALLY - it couldn't come soon enough! He is one of the ‘Top Docs’ and came highly recommended by patients and other doctors.

Oh my gosh, this whole endeavor has really been one ride of emotions!

First off this endo TOTALLY validated my feelings on the disease, my personal situation, AND the total lack of knowledge of my local doctors!

He initially came in the room and introduced himself and another doctor (very young – looked about 18 , haha) he had with him. He had my file in his hands and immediately asked me who he was to send his report to. I asked if he had received letters from 2 doctors? He had. I told him one was my GP and the other an internist I just saw. You might remember that my GP had refused giving me the referral and insisted I see an internist in his same practice – WELL, it turns out that my GP went ahead and gave the referral, HOWEVER he never even told me he had done that!!??? Wasn’t that nice! So I ended up with the GP and the internist referring me and both writing letters – NUTS! The endo said he would send letters to both. He then said the other doctor would examine me and ask me questions and write down the info and then they would discuss his findings together and would both return to talk to us (my hubby was with).

When he returned the young doctor was not with him and he explained that he got called to the hospital, but that they had gone over the information together before he had to leave. The FIRST words out of his mouth at that point were: “Your doctor is so far off the mark!” I nearly fell out of my chair. We had not even opened our mouths yet, not said a word about my GP, NOTHING! I had been sitting there thinking that my GP may have biased his opinion after that awful phone conversation when he refused the referral and told me in so many words I was crazy to ask for one, it wasn’t necessary, HE was treating me. I had told him I wanted a second opinion, that HIS opinion of thyroid disease was much different from what I had been reading and that since there are such varied opinions, I would like one from a specialist at this point, I have been suffering for so long, etc. He got angry and refused the referral! I noticed when the endo was asking me about whom to send the report to that the letter from my GP was a full typed sheet of info. – so he had plenty to say and as it turns out, showed the endo his complete lack of knowledge! The endo said he would be writing him a letter to INFORM him of my situation and telling him that I needed to be seen by him (endo) in 3 months. It was clear from what the endo said and the way he said that he is going to try to set this doctor straight. He was really appalled by the lack of knowledge. I did not even tell him about the things he said to me – that was just as appalling to treat someone the way he did me when asking for a second opinion! His comment on the phone keeps ringing in my ears, “I have treated a lot of thyroid patients!” As if that makes him knowledgeable and qualified – UGH! I know one endocrinologist that wishes he treated none! How can these DOCTORS know so little! Even when presented with accurate info I sent him about the narrowed TSH range, he refuses to believe it. It is so sad to think of the many patients he has treated and will continue to that won’t know how wrong he is and will not get better and probably only sicker, not to mention ALL those with thyroid disease that he won’t even diagnose as such! IF I had not done my research and requested the antibody and Free T’s, I would still be undiagnosed, as I have been for so many years. How can they practice medicine like that – I do mean PRACTICE – that is all he is doing and doing it very poorly. He told me that he would go ahead and treat me with synthroid, even though he didn’t feel it would make any difference at all in my symptoms, as NONE of them were being caused by my thyroid, one would not have symptoms until they had a TSH of 50-200, but that it would do 'no harm' to start treating me since my thyroid was ‘slightly abnormal.’ UGH! He did not even ‘do no harm!’ He made me worse.

The endo went on to tell me briefly about Hashi and that theTSH range had been lowered and I told him I knew that and had actually sent a printout of that info to my GP. I told him my GP’s ridiculous response to that when I asked him what he thought about that. He said, “I commend you on your research!” Wow, a doc that feels an educated patient should be commended – sort of rare, I have found!

He felt the same as I have, that I have been hypothyroid for YEARS and should have been treated LONG ago. I had the TSH results for him for the past 8 years, all of which indicated hypo (TSH started at 7.8, 8 years ago). I have been suffering terribly for at least 13 years, diagnosed as Fibromyalgia. Of course, that is in question now! I may have both FMS and Hashi, but definitely a LARGE part of the equation is thyroid. He explained that since it has gone on for so long that it will probably take a month before I notice any improvement and it will be more like 3 months before seeing significant improvement. I expected that, no surprise there. Three months compared to living in this misery for 13 years is nothing!

My GP had put me on 25 mcg of Levoxly. After 3 weeks on it and seeing the internist last week and my BP and heart rate going even higher (168/104 and a HR of 104 at that appt) the internist, mistakenly, thought that I had gone hyper now, so he told me to stop the medication! As Midwest and others have shared here and from my reading, that LOW dose was probably exacerbating my thyroid problems even more, high BP being one of them. The endo went on to say that Hashi also causes high BP in some – as I had also read. He feels the BP problems are probably thyroid related.

Midwest, as you have written, he said NO ATENALOL! I asked him what should be done about my high BP if it continues to stay high (another problem that has gone poorly controlled by my docs for as long as the thyroid problems!) and I told him that the internist was going to start me on Atenolol and he immediately said, “you were very smart to refuse it; it will make you way too weak!” I told him that was my experience as I had tried it twice before over the years and it made me so weak I could not function and had to stop it both times. I am on enalapril (vasotec generic), a teensy dose of that and he said that would be a safe one to increase, if needed. NOW I have to find an internist locally – UGH, none good to choose from there either! He gave me recommendations for the city, but I know I would never be able to get a referral to one, since my primary care clinic has about 5 in our small town. If it is needed, I will go, with or without a referral. I am also seeing a gyn in the city (thank goodness no referrals necessary for a gyn!!) for my endometriosis and assorted other problems and saw him the day before the endo and he asked me who my internist was when I told him I now know I have thyroid disease and he told me with my high BP problems (it was 178/104 at his office) and thyroid problems that it is imperative that I see a good internist. I agree! BUT good luck….BUT I will if things do not improve with the thyroid medication. He also said I had chosen the best endo in the area – so that was reassuring too.

The endo put me BACK on T4 – he prefers Synthroid, but said I could take Levoxyl, just NOT a generic. I filled it for Synthroid, costs more, but still reasonable and my pharmacy was out of levoxyl anyways, haha. He is prescribing more than 4 times the dose the GP had me on, .112 mg. I have really crashed today since being on the 25 mcg for 3 weeks and then on nothing for the past week. I could not get my script filled until today as we got back too late from the city yesterday. I will start it in the morning.

I will keep you posted on how I do on this dose. The endo did not even draw labs this time – I am sure it would have been pointless, he saw the numbers from March and knows what dose I have been on and that I was then taken off that, etc. He does not want to retest for 2.5 months, as he wants to see me at 3 months. I will have the blood work done here, so that he will have that when I am there for my appt. UNLESS, I need to see him sooner, of course – he did add that.

Thanks again everyone for the wonderful support and help along this bumpy road so far! You are to be commended on your good information and support. I have learned so much and read about 10 books now on the topic, in addition to a lot of info on the internet. Where would we be without the internet! I know there can be a lot of wrong info, one always needs to consider the source and then do their own research with any info they receive and get headed on the right path, hopefully!

Sorry this is so long, but maybe it can help others that are struggling as I have with awful doctors and are still searching for answers. I know I learn so much from other’s experiences, so wanted to share mine in case it might help someone else.

Best wishes and be well!
Sue

March 9, 2004
TSH - 6.21 (high)
FT3 – 4.49 (range 2.39-6.79)
FT4 – .44 (Low) (range .58-1.64)
TPO Antibodies – 105 Positive for antibodies (range 0-34)