Need organized thyroid info to take to new endo.

Had a dismal visit with PCP last week, asked for thyroid tests,she grudgingly ordered a tsh and a free T4. Usually I would have tests a week before my appt so results would be available for my visit and I could discuss them. Didn't happen this time. I tried to set up labs before the appt but she said she would order at time of visit. I wanted results to take to my new endo appt Apr 13 to save time. I received the results online a day ago. My tsh is creeping up but had no chance for dialogue. At this point I want a different PCP. She's not interested in talking. Questions are cut off; I asked her for a B12 test and Rx to give myself shots. Her reply was "B12 won't help if you don't need it". No conversation, no eye contact, just kept typing into her computer, No test, end of conversation. I am fed up. I feel tired and unmotivated all the time. Have many hypo sx-cold, tired, muscle and joint aches and pains, don't have any vitamin, mineral levels, no complete thyroid profile, am anxious, depressed, brain fog and have G.I. issues. The one problem I have that is in good shape is my a-fib cardiac status. My EP is the one who is helping me find new docs. Meanwhile, I know this new appt is just around the corner but I already know I'm seeing the NP on that visit. I am so tired, I arranged for my church to bring Communion to me Easter Sunday because I am just too tired to take Paratransit to church and deal with all the people. My knees are hurting -have appt in April re that, and my rls is bothering me. Have an appt at Emory University for that also in April. I feel like the only part of my body not falling apart right now is my heart. I am teary, frustrated, and mad that no one has figured out how to help me. I always go to the doctor having done my research and with some suggestions re solutions. All these copays are costing me money which, if I were getting effective help I wouldn't mind spending. My question is, if you were me what is the best reference book I can buy and read so I can go to this new endo prepared and organized. I am so frustrated and want to have my ducks in a row for this endo visit on Apr 13. If anyone has helpful info to PM me please do so. I want to have a back-up plan. I'm typing so fast because my mind is racing. I've spent 3 years eating right and losing a lot of weight and getting off many meds. I am gaining weight,haven't changed my diet, and I know it's my thyroid. My theory is if I can find a book that explains what I need to do I can present better with the new endo. Everytime I get blown off, more time is wasted trying to get better,. I'm tired of feeling bad while she and other doctors are enjoying their lives because they have no symptoms. Sorry for this disorganized post, my mind is all over the place tonight. My mind feels sluggish and I'm having a hard time knowing how thyroid values are supposed to interact. I'm not sleeping and I'm sure this is playing a role in feeling overwhelmed re the combination of thyroid issues, rls sx, and being told I'll probably need knee surgery to get rid of my chronic knee pain. I feel almost all my symptoms would be more bearable if my thyroid were functioning properly. My friend isn't much support. He tries to be but belongs to the"just do what the doctor says" school of thinking. So we end up arguing. Grateful for any advice. I feel like I helped people as a nurse, and now I'm swimming upstream alone. irina1975 BTY I am on 125 mcg of Levo. I had been on 100mcg until last October when- after my TSH was higher than the normal range, I pushed to have my dose raised. She said she didn't like to raise the dose til the TSH was significantly higher than normal range but I really insisted. Since then, no repeat tests, no further conversation.

[greygoose]

I'm not quite sure what you want, here, but the best book I ever read, that explained things very well, was Dr Broda Barnes' book 'Hypothyroidism: The Unsuspected Illness'. It's old, but he knew what he was talking about.

It doesn't sound as if your doctor knows about the protocol for treating thyroid. And, whilst your thyroid is never going to work again, if you get your dose of thyroid hormone replacement right, then you can feel well again.

With all hormones, you start low and increase slowly. So, the normal starting dose is 50 mcg. You retest six weeks after starting, and increase by 25 mcg. And, you repeat this process until all the symptoms are gone. That is the way it is done, and don't let any doctor tell you any different.

Ideally, labs should consist of :

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

But doctors will usually try and wriggle out of testing as many as possible! The most important number is not the TSH, it is the FT3. Most people need the FT3 up near the top of the range to feel well, but some even need it slightly over the top of the range. You are not over-medicated unless the FT3 is well over the top of the range.

The TSH should be one or under - wherever you feel well - just anywhere in-range is not good enough. It doesn't matter how low it goes, but if it goes over 1, you are under-medicated. The TSH ranges are a travesty!

You also need the FT4 tested, if you are on T4 only, so that you can compare the FT4 with the FT3 to know how well you are converting. If, for example, the FT4 is up the top of the range, and the FT3 under mid-range, you will know that your rT3 is high and you are not converting well. And, you need to reduce the T4 and add in some T3. If the FT3 is low, you are still hypo, no matter what the TSH says.

If you have high antibodies, you have Hashi's. No ifs or buts or maybes, you have it. You need to keep your TSH suppressed, to even out the Hashi's swings, and try a gluten-free diet and take selenium, to try and lower the antibodies. But, there is no cure for Hashi's.

Nutrients all need to be optimal for your body to be able to use thyroid hormone. Low nutrients will affect your conversion. But, so will many other things, like low-calorie diets, low/high cortisol, infections, high antibodies. You do what you can to correct these things, but the odds are you won't manage to improve your conversion by much, and the best solution remains adding T3 to T4.

I don't know what else I can say, except that ignorance of all things thyroid is a universal problem. Good endos, who know what they're talking about, are like hen's teeth! Which is why we're here to help. If there's anything else I can tell you, just let me know.

[Hidden in reply to greygoose]

Hi GG. Your post is exactly what I wanted. It's succinct, organized and helped me understand better how all the different tests tie together. I actually copied it in a notebook I take to dr's visits to jog my memory. I bulleted the different info and made a treatment plan to offer the doctor. Will update how all this goes. I am hopeful because my EP chose his endo recommendations for me taking into consideration someone with an open mind. I will remember to not take my levo the morning of (and am even thinking about skipping it the day before-an extra boost!). Also will remain NPO for 12 hours prior, and be well-hydrated. If he balks at any of the vit/min tests, I've got that covered. Two days earlier I am seeing a new neurologist re rls who was recommended by someone on health unlocked ( a member) who also lives in Atlanta. This doc also has rls and understands much more about the illness. I will ask him to do the labs as they are also values connected with rls. Will look up the book on amazon but with your clear directions I won't have to worry about reading it before my appt. I hope this is the beginning of a new 'thyroid' era for me. Thank you. I know this took a lot of time for you to write. I appreciate it very much. xx irina

[greygoose in reply to Hidden]

You're more than welcome. I'm so glad you found it helpful. Good luck!

[shaws Administrator]

If the Endocrinologist is good he should know how to make you much better. I am sorry you feel so unwell. We do get desperate when we take thyroid ormones and actually feel worse.

There's no point in you trying to find sources of information as many do not like patients giving them information. Just tell him how. We help pay for doctors training, so Endocrinologists should be knowledgeable. I hope he his kind and is able to help you.

[shaws Administrator]

The aim is a TSH of 1 or lower with a Free T4 and Fee T3 in the upper part of the range.

Most doctors or endocrinologists wrongly believe that a low TSH will give us heart or bone problems but that's untrue. Also many feel better with some T3 is added to T4.

[Hidden in reply to shaws]

Hi Shaws. I sent you a PM but also wanted to comment on TSH and cardiac problems. You are absolutely correct. In fact our thyroid being so out of whack can contribute to a-fib. My EP told me this. Also, since I have an ablation and a pacemaker and my rate is set at 70 thyroid tests of any kind as a problem with AF no longer apply to me. My PCP mentioned this-re can't let my tsh get too low. I reminded her it did not apply to me. I don't think she liked that. Thank you. irina