I'm tired of being made to feel like I'm crazy

[Penguinz68]

So I went to the new thyroid doctor today and felt totally and completely blown off and unvalidated.  :(

Quick background:  12 lb gain in 2 weeks, total 20.  Exhausted, cold extremities, brain fog, achy..on and on.  I'm trying to train for a marathon (my 4th), so I'm not uneducated when it comes to nutrition and exercise.

She pretty much said my blood work from September (TSH) was "normal" (all of my lab work is on low range of normal, including below normal for vitamin B and D) and blew off the rest of my symptoms as far as I'm concerned and started talking about calories out versus calories in.  DUH!  She also mentioned that I should document my food intake and make sure I'm really running 12-15 miles a week like I said I was (because a GPS watch that tracks my running couldn't possible be right).  She also suggested my body is changing as I'm in my 40's and that I could just be stressed because of my dad passing away.  I flat out told her I was raised by an alcoholic mother who on occasion beat me, I have never not known stress.  Yes, I miss my dad and am grieving, but we also knew he was dying (not to sound cold) and had our time together and chance to say our goodbyes...and this all started before that.  I take Aderral for ADD and it's a stimulant.  It helps with the brain fog, but if I don't take it, I am so exhausted I can barely get out of bed.  A medicine that helped me get more focused is now the only thing that makes me feel "normal" energy wise.  I told her I had a big issue with that.  She pretty much brushed it off.  I'm tired of my fingers getting cold and numb as soon as it gets chilly, tired of being tired, of not having any sex drive at all (sorry for the TMI)....

She ordered some blood work (CMP..no idea what that is, Cortisol in the morning, and ACTH...no idea what that is, LH and Estadiol).  When I asked her about testing my free T3 and free T4 she said there was no need to because my TSH looked fine and she really isn't concerned about my thyroid.

I almost walked out in tears.  I don't feel like myself.  I'm not even sure if I want to bother with the blood work and go back to see her.  Am I being unreasonable?

[darlin9377]

Hello--just read your post and it INFURIATES ME! Why do so many doctors not listen to their patients? This doc of yours needs to be cut loose, as in FIRED. There are doctors who do listen but they are hard to find at times. Here is a website; go to Mary Shoman's website and type in Top Thyroid Doctors Directory; then you pick your state. There are times when it is not updated; such as a doctor  retires or moves, but this will help to get you started in locating one. Also go to the web and go to Naturopathic MD"s and Doctors, this will give you links to more holistic, alternative/complementary physicians...it will give you their directory of names. Oregon has a huge ND school and you will be able to find a great one out there, I should think. (I think I saw it mentioned you were in Oregon?) If not, where? I've been where you are..long ago. I finally found an endo who actually listened to me, and did other tests besides the "almighty" tsh. After gaining 50 pds in one year, yes, one year, and my barely being able to get out of bed, feeling  depressed, dry skin, hair, nails, joint issues, etc...I got on thyroid meds and began to feel normal again. It has been 20 years and although I've lost half of that weight it can be a struggle at times. These doctors take the Hippocratic Oath to "do no harm" but, many do by being neglectful and ignoring the complaints, signs and symptoms we have. I could go on..... Please look for a doctor who is Holistic, either an MD or an ND; mine now is both! I do have hope becaue there are many finally getting it and understand there is so much more to the thyroid than what they were taught in medical school.  Oh..here is another site and it is good. www.stopthethyroidmadness   Good Luck. Let us know if you have success.

[darlin9377]

PS..you will have to find a doctor on your own and pay cash; this way even though it is expensive you have the control and the ins. company or your doctor does not. You can order the tests that you want. LabCorp also has tests you can order online, did you know? You order for it and pay for it and then go anytime with your printout. By the way- many offices will give discounts today if you say you are paying cash, instead. Many offices here in NC take 40% off the bill! Also, some doctors who are Family practice-physicians are also integrative and can do all the extra things because they don't fall under the category of "holistic." You sometimes have to dig deep for these kind--ask questions first before you even go. They usually don't advertise they are integrative, this way they can "get away with it." DO's are good for this, too. Look at their website as well. Once the insurance companies see you want to go to these alternative docs, they get crazed!..OMGosh...it's like, "Oh no! Let's not pay for a doctor who will uncover problems, getting to the root of it all with a more naturalistic, integrative approach."  Instead they have the attitude, "Heck! this gal has insurance..let's take her thyroid out, burn it, cut it, operate, give her drugs she doesn't need..." etc It is insane the insurance companies will pay for a conventional doctor to run unnecessary tests or not enough, prescribe drugs that cause more harm than the problem itself or suggest surgery to correct something that may be easy with other forms of therapy. As you can probably tell, I have been there so many times...even after I found the one years ago to help me because we moved.  GRRRRrrrrrrrrrrrrrrrrrrrr

[Totie]

I totally agree with everything said here!!!

I finally took the leap & decided I needed an endo so my PCP gave me the referral, however, I researched one I wanted the referral too. My PCP is great (had him for 18yrs) & basically treats me like I know my body well enough to know when something is wrong with it. He knows I am not the norm when it comes too medical issues & is always apologizing for not being able to figure it out, but well send me to a specialist if it is out of his realm.

I was treated for depression for 6 months before I hit a thyroid storm

When I got the referral to this new Endo I wrote her a letter explaining my symptoms & if she could help me fine, if not please do not waste my time or yours and cancel the upcoming appt...I flat out told her in the letter I do not have diabetes and I know most Endos only really care about diabetes & give thyroid issues a "your blood work is fine" see you in 1 yr. She actually called me and said please keep the appt. you should have been monitored by an Endo due to having the RAI & TT. I know the RAI caused some of my symptoms & issues. Thyroid eye disease, salivary gland issues. Had to have one completely removed.

I did see her back in Dec. she switched my dosage & brand name for now. I go back in Feb for blood work to make sure I do not have parathyroid issues, she doubts I do, but I had low Vit D & my calcium levels were only 10.2-10.4. However I recommended she test me & she actually said it could not hurt any to make sure.

I have always had my PCP regulate my dosage & TSH level, but this last time the TSH was 13.8 & he did not feel comfortable messing with the dosage due to not being able to figure out why all of a sudden I became fatiuged & weight dropping. I had been on 125 mcg for the last 5yrs, prior to that I was at 200mcg for 10yrs. Now I am at 175mcg.

Maybe it was a different filler used the batch I got, not sure.

[gimel]

When you go back in Feb. for blood tests, please make sure they test beyond TSH.  I strongly suggest that you should request to be tested for Free T3 and Free T4 also.  Thyroid patients taking large doses of T4 meds frequently find that their body is not adequately converting the T4 to T3.  This results in a Free T3 level that is too low in the range and associated hypo symptoms.  If the doctor resists testing for FT3 and FT4, then you should make a stand and insist on it.  Free T3 level is too important to assume it is okay.

If you have any doubts about this, I'll be glad to give you links to scientific studies  showing that TSH, or TSH plus Free T4, are not adequate for testing a thyroid patient.

[Totie]

I went back on Jan 4 to retest on the 150mcg dosage & my TSH was .36 & my Free T4 was 1.44 (do not know the references), this lab work was done by another PCP who had it scheduled back in Oct when my TSH was 13.8 he upped the dosage to 150mcg until I got in to see the endo. I had only been on the 175mcg 4 weeks prior to having the lab done, so I don't know if the 175mcg has taken full effect or not.

I go back on Feb 16 for lab & will ask what they are testing for. I think they will only be testing for parathyroid issues. My endo can see all the lab work done because they are using the global network so she knows what my levels were back on Jan. 4, but told me to stay on 175mcg of Synthroid.

I do know the fatigue has lifted, but still don't feel right, but it could all be due to maybe being peri menapause? I know my thigh muscle aches have NOT changed any....I was hoping they would, but so far no...

[gimel]

Looks like your Free T4 is near the top of its range, which is to be expected when taking a large dose of T4 meds.  Even that dose is not relieving all your hypo symptoms.  Again, I urge you to do whatever necessary, including an all out demand to be tested for Free T3.  You should not accept anything less.  You need to be your own best and strongest advocate for getting the testing and treatment you need.  You cannot depend on the Endo to make all the right decisions.  You need to help/push him to do the tests.  

I would also suggest that, if not already done recently,  you request to be tested for Vitamin D, B12, and a full test panel for iron anemia.