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Old 07-17-2012, 09:20 PM   #1
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Question Secondary Hypothyroidism? Advice.

Hello,

I am new to the thyroid test analysis, etc. However, I am not new to having hypothyroid symptoms with my TSH levels ALWAYS being in the normal range. I currently am having significant symptoms that I have been wracking my brain trying to figure out the cause.

Little bit of a history of me.

I have always been overweight to some degree. However, at certain periods of time, I ballooned up without really a cause (other than being told I am lazy and eat too much- which is not the case but I have weight gain). The more I would diet the more I would work out ... no weight loss or I would gain.

I do have a history of infertility. In grad school, I would have messed up long non-ovulatory cycles. I attributed this to stress. After grad school, my cycles normalized and I do believe I was ovulating. However, no pregnancies.

Weight loss was so impossible for me even with strict rigid dieting and exercise I chose to do gastric bypass. I did well - lost 140 pounds. Normalized my weight and kept it there for 3 years. Tried to achieve pregnancy... again nothing. Went to an reproductive endocrinologist. All my labs came back normal except a red flag came up with my TSH which came back as 2.55 and their lab top is 2.50. All that resulted from this test, was my having to go in and have a nurse feel my thyroid, which she said was fine. Nothing more on this topic.

My husbands numbers came back low.. not crazy low ... but low enough to suggest IUI. So we embarked upon this journey. I responded well to hyperstimulation and we ended up doing 5 cycles with a pregnancy, I miscarried at 7 weeks. Took a one month break, and did another cycle. I was pregnant again and this time it took. I have a beautiful baby girl who is now 20 months old. Woo Hoo!

During my pregnancy, I was sicker than a dog pretty much the whole way through. However, my symptoms were not pregnancy stuff (nausea, heartburn, typical stuff) I didn't have really any of the normal stuff. Instead, I couldn't get out of bed (literally), massive brain fog (could not complete tasks), was crabby and irritable, having episodes of feeling jittery and weak. My OB/GYN ran tests and said everything was normal and I should drink caffeine. My TSH was 1.67 and my Free T4 was .9 in a range of .7 to 2.2.

Now prior to becoming pregnant, I was diagnosed with a severe vitamin D deficiency. My numbers were like 10 or so. So, I was given Megadoses of Vit. D. and a 2 month plan. Once the two months was up, my numbers would drop and they would give me another 2 month round of Vit D. Well, when I got pregnant, the Bypass folks passed me off to my OB/GYN and said do whatever they suggest.

My OB/GYN ran a vitamin D test which was 119 out of 78 to like 98 or so. He ran a different test than what I am used to, which is why it didn't flag in my head that my vitamin d was off yet again. Again, he stated all is normal drink more caffeine. So unfortunately, my Vitamin D levels were significantly low while I was pregnant.

I also ended up with hydronephosis of the left kidney and was in the hospital for 4 days on antibiotics.

I am sorry this is becoming a long book.

After I had my daughter, I went back for my yearly with the bypass people and they again stated my vit d levels were off. Back to the band aid technique. Long story short, I went to an Endocrinoligist and he diagnosed me with Secondary and some tertiary hyperparathyroidism. I have been seeing him for the last year. We have been working on normalizing my vit d levels and my PTH. Which, now I can say, I have normal Vit.D, PTH, and calcium. I have to take 50,000 IU of Vitamin D daily and that seems to do the trick. I felt better, not perfect, but so much better that I thought that was my problem while pregnant. Now, I am not so sure.

My husband and I started to do fertility treatments again this past January. I should mention I lost all my baby weight. I put on roughly 10 pounds while being on the fertility meds but I got back to my weight with the extra 10 pounds. It was kind of strange how my weight just stopped there but I got the majority off. So, whatever.

Anyway, we did treatments for four months with no success. During this time, I gained 30 pounds with no real change in anything diet-wise, exercise-wise, etc. I also noticed that I have significant swelling. My face, eyelids, lips, hands, legs, ankles, feet are all swelled up pretty much everyday. I am moving into a very tired and exhausted phase. I am also having the "jittery weakness" attacks every now and again. In the morning the edema starts in my face and works its way down by the end of the day. I have been strictly dieting and drinking tons of water since the end of April and have successfully gained 5 pounds in this time frame. WOO HOO! My weight has been all over the place. I have approximately one week during the month when the water comes off ... but then immediately goes back up again. It seemed to be cycle related.

However, now, I am pretty much just up with water weight. I feel exactly like I did before I had my g-bypass surgery. I have tried diuretics, no luck or minimal.

I talked with my endocrinoligist and told him my symptoms and he added TSH to my Vit D and PTH labs. My TSH was 1.23... NORMAL. I have talked with my GP and he just pushed me off to my endocrinologist without running any sort of testing.

So, I called my endo person again. His nurse informed me that they don't deal with edema and your thyroid was fine so... I don't think we can help you. I could have cried. I said he doesn't test hormones?? Well he does and we can run some hormone tests... but I will have to talk with him. I couldn't believe what I was hearing. WHO DO I TALK TO THEN???

She called back about 45 minutes later and my endo put in an order for free T4 and 24 hour urine cortisol. My free T4 came back at .9 .8 to 2.2. is reference range. NORMAL again, right??? I am still waiting on the Cortisol test to come back.

This all leads me to this board. I am finding that the relationship between TSH and T4 is really the key. Am I correct in thinking I could potentially have secondary Hypothyroidism?? which could indicate Pituitary/Hypothalmus issue?? I could go into more symptoms but I have always felt that I fit the bill for hypothyroidism but my TSH always came back normal.

I will talk with my Endo this Friday and I am fearing that he will tell me all is well.

Does anyone have any advice??

Mollie

 
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Old 07-18-2012, 01:21 AM   #2
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Re: Secondary Hypothyroidism? Advice.

Welcome to the board although I'm sorry for the reason you're here and all your struggles leading you here.

Please note I have no knowledge whatsoever what concerns hyperparathyroidism.

That being said, when I read your story, to me it pretty much points to a typical hypostory, with that exception that your TSH is not standard enough to elevate. (if you read around on the board, you'll notice you're not alone) BUT this phrase pretty much summarizes it all
My free T4 came back at .9 .8 to 2.2. is reference range. NORMAL again, right???

As you might know TSh is a thyroid stimulating hormone, produced by the pituitary gland and consequently not an actual thyroid hormone. FT4 and FT3 on the other hand are the actual thyroid hormones and when they drop too low for your body, those will cause symptoms.

In textbook scenario: TSH will rise, when FT4 and FT3 will fall. Consequently all too many doctors (and unfortunately endo's seem to be the least likely to recognize hypoT ) are focussed on TSH, which does not give the whole picture and can be misleading.

That being said, normal aka within ranges does not mean much in thyroidland. Most people need their free levels at least midrange in order to feel well. If you keep that in mind, your FT4 is near bottom, so hypoT.

If the consultation on Friday does not go well, I'd try to find a more thyroid savy doctor. Also good to have your FT3 tested next time and thyroid antibodies (relevant for hashimoto are antithyroglobuline antibodies and antiTPO).

Hope you receive the treatment you need soon. hang in there.

Last edited by lisa789; 07-18-2012 at 01:23 AM.

 
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Old 07-18-2012, 02:00 AM   #3
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Re: Secondary Hypothyroidism? Advice.

you need to dig more with endos, i second what lisa said, you need all TSH, FT3 & FT4 in order to have the complete picture, other members are more experienced than me , i hope you get good advice and feel well soon

 
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Old 07-18-2012, 08:46 PM   #4
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Re: Secondary Hypothyroidism? Advice.

Thank you both for your advice. I am hopeful for Friday's discussion. I have no idea how my endo will respond to the new lab work as we have really only ever discussed my hyperparathyroidism. He did, however, run a TSH ONLY on my first appointment with him. This is disappointing because I was talking about how terrible my symptoms were when I was pregnant, etc. Fatigue, brain fog, etc. I attributed all the symptoms to my vitamin D deficiency... but what I was describing was HypoT symptoms. He picked up on the fact that they didn't match with hyperparathyroidism, etc. but didn't think HypoT. Or he did and only ran a TSH, which in my case shows NOTHING. *Sigh*

He has listened to me before and was very helpful. So, I am hoping he will be again. I must admit I am happy and mad at the same time. I am happy I have a possible explanation for my symptoms that I have been having LITERALLY for years and years and years. I am mad because so MANY people missed it. My OB/GYN ran tests when I was pregnant (two years ago) TSH and Free T4 results showing what they do now.... and he told me all was fine. When I knew deep down it wasn't. *Grrrr*

Anyway, fingers crossed for Friday. I should ask for Free T3, antibodies, and TRH? I am thinking the problem is within my pituitary? Is this a correct line of thought??

Thanks again for your help,

Mollie

 
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Old 07-18-2012, 09:57 PM   #5
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Re: Secondary Hypothyroidism? Advice.

No, it doesn't seem to be a pituitary problem. With that, TSH would be low with very low thyroid hormones, or TSH would be high with corresponding high thyroid hormones. It's probably Hashimoto's thyroiditis, as that is the most common cause of hypothyroidism in the US. You should ask for tests for TPO and Tg antibodies to check for Hashi's. The antibody tests aren't infallible, though. Negative results don't necessarily rule out Hashi's.

It's the antibodies which keep TSH from appropriately rising even after the FTs have become deficient. That's why we so frequently can't get a diagnosis from MDs who mistakenly believe the TSH is the 'gold standard', infallible thyroid test. I hope your endo is not like them.

Let us know how it goes.
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Old 07-18-2012, 11:07 PM   #6
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Re: Secondary Hypothyroidism? Advice.

I felt so sad for you when I read your story. I also had normal labs for about 7 years or longer and felt like crap. All the hypo symptoms. Then nodules appeared on my thyroid and suddenly they wanted to treat me. Has anyone done an Ultrasound on your thyroid? I have Hashi's and have been on Medication now for a long long time. My labs never came out of normal range and really never moved much on Medication but I feel better. My nodules are suppressed and all is well in my world. Good luck to you...Oleander

 
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Old 07-19-2012, 07:20 AM   #7
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Re: Secondary Hypothyroidism? Advice.

Thank you very much! Like I said I am kind of new to the thyroid stuff and numbers, etc. The pituitary scenario wasn't fitting so well... however, Hashi's does. My mother has Multiple Sclerosis and my Grandmother (my mom's mom) had Rheumatoid arthritis. This would definitely fit into my scenario. Thanks again. I will keep everyone posted.

Mollie

 
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Old 07-20-2012, 11:49 AM   #8
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Re: Secondary Hypothyroidism? Advice.

Well... I am still in the normal category. My thyroid levels are fine according to my endo. His first inclination is to talk about weight loss programs.... and sleep clinic. I had to argue my point. So, he decided that if my labs came back abnormal he would treat with something.

So, He ordererd TPO and antibodies (he was humming and hawing- so I am not sure what he ordered per se), Free T3, Liver Functions, Lupus, RA Factor, Sleep Clinic, and Ecocardiogram.

He wanted me to know that he just doesn't feel like it is my thyroid but if the numbers come back abnormal he will treat me or send me to where I belong.

I just don't know what to think.


Mollie

 
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Old 07-20-2012, 12:01 PM   #9
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Re: Secondary Hypothyroidism? Advice.

Sorry to hear about such a disappointing endo conversation! I've had too many to count.

Even if one of the tests came back abnormal, I'm not the least bit confident that this endo would do what it takes to get you feeling well. He clearly doesn't know how to interpret thyroid labs.

(Just so you know, problems with endos not diagnosing/improperly treating thyroid disease are rampant. It's a recurring them on the multiple thyroid forums I've participated on for the past 5+ years)

You might want to read "What Your Doctor May Not Tell You About Hypothyroidism" written by endo Dr. Ken Blanchard. He writes about people having "normal" (aka in-range) thyroid levels and raging hypothyroidism.

I also suggest that you work towards finding a "non-endo" that better understands thyroid disease. Dr. Right often comes in the form of a DO, internist or alternative MD.

A thyroid-savvy doctor would recognize your woefully inadequate FreeT4 level and get you started on some thyroid hormone replacement.

You could try asking local pharmacists (not the counter help) for the names of doctors who prescribe either Armour or Cytomel. These are two types of thyroid meds that "with-it" doctors Rx.

Another idea is to check the Top Thyroid Doctors site for a listing of doctors in your state.

The Broda Barnes Foundation will supply an information packet (for a fee) that includes a list of doctors in your state who follow Dr. Barnes' ideology (he wrote "Hypothyroidism - the Unsuspected Illness" and was lightyears ahead of his time)

Don't give up until you find a doctor that recognizes what is obvious to us. It is worth every effort.
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Last edited by sammy64; 07-20-2012 at 12:16 PM.

 
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Old 07-20-2012, 12:07 PM   #10
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Re: Secondary Hypothyroidism? Advice.

Thanks for your response. I could just scream right now. At least he is going to run the tests but I don't feel like this is going to go anywhere that would be supportive even if my labs do come out a tich off.

I am not far from the Mayo hospital in Rochester. Do you think going to another Endo? would be beneficial or not? I think they are the top rated or one of the top reted thyroid programs. Or maybe I am just crazy.

Should I even bother with the labs he orders?

Thanks for any thoughts.

Molli

 
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Old 07-20-2012, 12:16 PM   #11
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Re: Secondary Hypothyroidism? Advice.

In the time I've been a member of Healthboards, I've seen at least two folks here who tried the Mayo to get diagnosed. It failed to work. Their endos seem to be extremely "by-the-book" types who will not consider any shades of thyroid gray.
I'm not saying you should definitely rule them out... just that it didn't help on at least two occasions.

We who have found good thyroid care know that endos are not typically good at it. I second Sammy's advice about how to find a good MD.
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Old 07-20-2012, 12:28 PM   #12
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Re: Secondary Hypothyroidism? Advice.

I think you should trust your gut with this endo. Your significant symptoms indicate hypothyroidism and your FreeT4 level confirms it. I think you would have to fight tooth and nail for the proper treatment and I doubt you'd win.

Doctors that don't understand thyroid disease (and this starts with labs interpretation) will not prescribe sufficient doses of thyroid hormone replacement to those of us dealing with hypothyroidism.

The labs might be helpful for future doctor visits (if the right labs were ordered). If you haven't had the blood drawn yet, I'd say save yourself the time and your insurance company the money.

Dr. Right will run the appropriate labs.

The first 2 endos I saw had no idea how to medicate. I decided to start looking for a new doctor - any doctor - to care for me. I scheduled appointments with several doctors with the intention of cancelling future appointments should I meet Dr. Right.

Endo #3 lasted all of my first appointment and labs. My GP proved clueless as well.

The 5th doctor I saw was an internist. She told me what I wanted to hear and continues to care for me to this day. I feel great and can attest to the difference a doctor can make.

"The Autoimmune Epidemic" states that the average person with an autoimmune disease sees 6 doctors before getting properly diagnosed/treated.

I'd be more inclined to use the resources I shared with you....if a doctor at Mayo is on the list, by all means, make an appointment.

Since it can take awhile to see endos, it really makes sense to expand your search to include doctors who have proven themselves to be thyroid-savvy.
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Last edited by sammy64; 07-20-2012 at 12:31 PM.

 
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Old 07-20-2012, 12:29 PM   #13
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Re: Secondary Hypothyroidism? Advice.

That is what I am thinking. I don't know if more specialized is better. Sounds like not. He offered me to go to some of his collegues but those who house together generally are of the same mind set. I guess off to find a new General, which I have to do anyway, he was of NO HELP what so ever in all of this.

Thanks again,
Mollie

 
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Old 07-20-2012, 12:33 PM   #14
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Re: Secondary Hypothyroidism? Advice.

Specialists might be good for other health issues but, the lack of endos' proficiency with thyroid care is rampant and has been the subject of many petitions to the AACE, ATA, etc.

Please keep in touch during your quest to find a thyroid-savvy doctor. We care.
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Old 07-20-2012, 12:58 PM   #15
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Re: Secondary Hypothyroidism? Advice.

Made an appointment with a Doctor as listed as a top Thyroid doctor who in an internist and specialized in endocrinology. I don't know if this will go any better. *sigh*

Mollie

 
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