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Old 09-12-2011, 02:31 PM   #1
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Unhappy Need Thyroid opinions, please help...

I have so much going on but I'll try to keep it short. I have had "symptoms" of Hypo for years though never really bad but there. Tests always came back within normal range but as I'm learning that happens all the time w/o dx. My dr put me on Synthroid to see if that helped at all & it did. I took it for 2yrs & then my dr moved & I followed up with the nurse practitioner until I found a new one she said it's normal you don't need to take it. Therefore she wouldn't refill the meds. So I still suffered mildly in silence but it wasn't really bad enough for me to throw a fit over it.

That was 3yrs ago I stopped. So fast forward I've been batteling infertility for 2 1/2yrs. Last year I started to get serious about it & we were running every test under the sun. In Jan with a new OB he tested TSH which was 2.545 at the time so he said no thyroid issue. I felt a lil hypo then but not that bad. Anyways that issue remains unexplained.

Now about 6wks weeks ago I got severely sick. Like I had chronic dizziness all day, shaking hands, shortness of breath or gasping for air, really bad heat intolerance to the point I felt like I was having a heat stroke in the ac, constantly feeling like I was going to pass out, insomnia/exhaustion at the same time & bad heart palps. I simply could not function! After a dear friend who has Hashis/cancer suggested I see the dr about thyroid I went in. I was blowing it off as hormonal from the fertilty drugs.

We drew labs which came back at TSH-1.28 (range .34-4.82) & Free T4- .77 (range .77-1.61) dr insisted they were normal. My sickness got worse by the day. She thought it was pcos & a heart condition. All pcos testing came back normal including glucose test & heart monitor only suggested occasional palps & increased HR but not due to a heart condition. My friend said get an antibody test & adrenal function, antibody came back neg (don't know the #'s) & Cortisol came back low at 5.9 (range 6.2-19.4) Now that was blood cortisol they ran at noon so I imagine am would have been lower. Now after all these tests & no answers I had a major meltdown with the dr last week that it wasn't getting better & hyper just fits. I love my dr but I feel like no one is listening to me! Like I'm crazy making this stuff up. All the pieces fit except weight loss but I eat all the time now. I have such an increase in appetite I make myself sick by overeating. I'm getting better at forcing myself to stop.

Tomorrow I'm scheduled for the iodine uptake test because I demanded it & praying to god it shows something!! Today I have a new problem but not sure if it's associated, I have severe tightness in my chest with the shortness of breath. It feels like a 30lb weight sitting on me & the most I can get w/o it being painful is shallow breaths. Dr can't get me in so I'm trying to ease it with anxiety meds but will be trying a muscle relaxer soon. I know this is thyroid, it just makes sense. However with my free T4 being on the lower end that's more suggestive of hypo, I def feel hyper though. Does it sound like maybe T3 toxicosis? They haven't run T3 at all yet. Any help or opinions greatly appreciated!! I feel like even a hypochondriact wouldn't believe all of this stuff, I'm starting to lose hope & I'll be completely lost if this test doesn't show anything. If I have any thyroid problem at all will this test show it no matter what? I'm a nervous wreck it will be hidden. Sorry so long & thank you if you have made it this far!

 
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Old 09-13-2011, 01:36 PM   #2
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Now I want to say I am not a MD. I am a scientist and engineer. However I suffered from untreated Hashimoto's and Graves thyroid diseases for four years before I found a doctor who recognized my issues and help treat them.

Early on we discovered the cortisol dependence on thyroid conversion and that my untreated hypoT state resulted in Hypoadrenalism.

My lab results were VERY similar to yours and the blood work recommendations were those that were used to diagnose my condition.

You need to go to a MFM there is no way that a T4 value at 0% of range is normal. I think that your MDs Are looking at your TSH and nothing else. You need a new MD in my opinion if this is the case. Many MDs only look at the TSH.

You also need a FT3 test. They performed an incomplete thyroid panel on you. You have two main thyroid hormones that support your bodies metabolic functions. With out the FT3 you can not tell if your conversion rate is balanced or if you are converting to T3 verses reverse T3. This is a definite sign of thyroid ignorance in my opinion.

Antibody tests do throw false negatives. I would like to know the names of your antibody tests.

Search for threads by mkgbrook, keywords thyroid care and concerns. This is an information filled six thread series that i am planning on reviving. I believe that information in these threads can be of help to you.

For a complete adrenal rhythm profile my IM MD used a 24 hour saliva cortisol profile and an 8 am blood draw. Your cortisol level should never be that low. When mkne was that low i was tired all the time. No energy. And mentally only partially there. The hypot state was amplified. I suspect untreated hypoT induced Hypoadrenalism just because I have been there and the blood work test results are very specific. Hypoadrenalism is discussed in that thread series I mentioned above.

You really need to find a partner in care that will listen to you and find the source of your issues. I wish you the best of luck.

Sincerely,
MG

I truly wish you get the care you deserve.
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Last edited by mkgbrook; 09-14-2011 at 09:23 AM. Reason: Clarity of status

 
Old 09-13-2011, 09:00 PM   #3
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Thank you so much for your response!! I was so hoping you'd see my post & be able to help. I've been trying for over a month to get into an endo but they won't see you w/o a referral. I did however find an internal med dr locally that does not require one so hoping to get in with him soon. May I ask what a MFM is? I'm not familiar with that abbr. I plan on poking the tech with questions tomorrow about my scan to see if I can get any info so I don't have to wait a week. I'll def take your advice & demand all the testing be done & research this hyperadrenalism. Thanks again!!

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Old 09-13-2011, 09:42 PM   #4
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Maternal Fetal Medincine - this is a specialized OB. They don't catch the babies that you pop out, but they do manage high risk pregnancy and fertility challenged patients.

Your IM is fully capable of ordering any test that you need. The question is relaying that information.

So the standard thyroid panel COMPLETE that my MD uses for monitoring me and many in my family is as follows:
TSH 3rd Generation
FREE T4
Free T3
Antibody panel early on this was tested every 6 months then it was backed off to once a year. When I got pregnant the OB and MFM checked them again at the onset of pregnancy and at the end of the second trimester when the fetus has an active thyroid. The problem with thyroid Ntibodies is thAt they can cross the placenta barrier and effect your unborn Childs thyroid. In my third trimester with my daughter they performed targeted US to look at her thyroid. Luckily we did not see any nodules or abnormal growth. Things turned out all right.
TPOAB
TGAB
TSI
TRAB

My OB and MFM were adamant that for a woman wanting to get pregnant your T4 levels should be 60-80% of normal range not 0%. The first two trimesters the fetus depends on your T4 to develop and grow. Not enough T4 and you will not get pregnant and stay pregnant. I got pregnant with a T4 level at 48% of normal range. In a matter of weeks my daughter was skimming off 20% of my thyroid hormone. Every two weeks my MDs tested my FT3 and FT4 levels. Each time resulted in a 12.5-25 mcg T4 increase. I went from 112mcgs of T4 to 175mcgs of T4 and a grain of Armour. The got me to 75% of range in about 2 months and kept me there. You may need a new OB that is familiar with thyroid issues.

The Complete initial adrenal panel that my MDs used to diagnosis me is listed below.
8 am blood draw for best results
Cortisol
Aldosterone
DHEA
ACTH

I suspect that if you and your MD repeat your tests you will see is low cortisol again. Low cortisol tends to result in Low T4 levels because thd T4 is being used to make T3. If you research on T3 it is a known TSH suppressant and will result in a low/normal TSH.

This scenario is caused by Hypoadrenalism and what my IM and fifth Endo used to say Hey! Your hypoadrenal. Cortisol acts as the thyroid T4 to T3 conversion regulator. If you do not have enough all your T4 is converted to T3. This leaves you living the life of a thyroid contradiction hypoT T4 and hyperT T3.

I truly hope you can get the care you deserve. It took me four years and going through MD after MD to find the one that worked for me. I can be a difficult patient.

Sincerely,
MG

Last edited by mkgbrook; 09-14-2011 at 09:41 AM. Reason: Clarification of status.

 
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Old 09-13-2011, 11:45 PM   #5
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I just have a couple of questions. In reading your post and seeing you mentioning fertility meds, shortness of breath, and pain with breathing in too deeply, along with a feeling of weight on your chest, I felt uneasy. This is very likely thyroid or stress related, but if it doesn't go away soon, please ask for a blood oxygen and d-dimer test. I say this because although it is very rare, the risk of (pulmonary embolism) blood clots in the lungs is higher with hormonal meds, and it happened to me at age 30, very young. So (and my intent is not to scare you!) if this is something that sticks around or gets worse, or if you have any pain in your calves (DVT) please demand that they do a d-dimer. It's a blood test and is used to determine whether your clotting function is normal. Again it is very unlikely that you would have this, but please don't suffer any longer than you have to. All the best to feeling better very soon!

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Old 09-14-2011, 04:18 AM   #6
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Gotcha, I've never heard of an MFM I'll have to look for one. Only thing I'm familiar with is RE's which I haven't seen b/c my insurance won't cover that but they cover OB's. I need to get a new OB being when I saw mine the last time he just told me I needed to lose 50lbs & wouldn't wish pregnancy anyone my size. He then went on to say it was natures way of telling me I didn't need to be pregnant right now. Granted I am heavy at 210lbs but I do have a lot of muscle & there are plenty of women who weigh more than me having babies! I also was on depo for 12yrs which is a steroid so it causes weight gain & how long have I had thyroid issues that make losing weight impossible. Anyways he was fired that day but I haven't looked for a replacement since we're trying to figure out this other stuff. Now I have another question for you if you don't mind. When my TSH was 2.54 in Jan & in Aug it was 1.28 should it change that much w/o being medicated? I mean is it normal for it to fluctuate that much or does is clearly indicate there's an issue? I couldn't really find any info on that. Also you asked about which antibody test I had, on the results sheet they sent me it just says Antinuclear Antibodies Direct. Then it just lists neg where the lab reference should be, no other info but I can call the lab & ask what that includes. I will say I was so frustrated I asked them to mail me all my labs they've run, had I not I wouldn't even know this stuff.

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Old 09-14-2011, 04:37 AM   #7
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Hi & thanks for you help! You didn't scare me at all, I want to be informed of all possibilities so I can get treated as quickly as possible. I did inform the dr about my gasping for air & they're supposed to be doing some kind of oxygen test you wear on your finger for a day or something. My guess is she's gonna check for sleep apnea but I do it all day & at night it wakes me up. I'm 29 til Dec so about the same age & really at this point I've figured out I'm not invincible to anything at this age. I took clomid for 4mths & even though they say it's not a hormone it stimulates your pituitary gland which creates hormones so I'm not really sure how they get away with that classification. The tightness is for the most part gone now but a lil heaviness remains. I will def watch that very closely & right now I'm keeping a journal of everything that's going on & the time.

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Old 09-14-2011, 05:10 AM   #8
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=Myboo99;I've never heard of an MFM I'll have to look for one.

MFM should be covered. There should be a group associated with your nearest major city hospital. Medicare patients get to see them. Call your insurance company and ask if high risk pregnancy consultation with a maternal fetal medicine MD is covered. It should be other wise there are law suit issues due to neglegent care provision....

Only thing I'm familiar with is RE's which I haven't seen b/c my insurance won't cover that but they cover OB's.

MFMs are specialized OBs but they study how to treat all the things that go wrong with a pregnancy. Gestational diabetes, thyroid issues, over 35 pregnancies and more.

I need to get a new OB being when I saw mine the last time he just told me I needed to lose 50lbs & wouldn't wish pregnancy anyone my size. He then went on to say it was natures way of telling me I didn't need to be pregnant right now. Granted I am heavy at 210lbs but I do have a lot of muscle & there are plenty of women who weigh more than me having babies!

Losing weight would help, but if you are eating healthy and exercising and still unable to lose weight then you might have a problem causing it. I was running 5-10 miles a day, weight lifting 5 days a week, doing martial arts multiple nights a week, and doing weight watchers and still unable to lose weight inthe NORMAL thyroid range. My FT3 was 30% and my Ft4 10% TSH never cleared 2.

The first thing the MFM will tell you ismthat for you to have the best chance you need an FT4 level in the 60-80% range. Anything less and you and your developing fetus will be at higher risk for complications, mental developmental issues, and more.

also was on depo for 12yrs which is a steroid so it causes weight gain & how long have I had thyroid issues that make losing weight impossible. Anyways he was fired that day but I haven't looked for a replacement since we're trying to figure out this other stuff.

Do not expect me to explain the inner workings of a MDUM. They are a common breed and just need to be tolerated and only given patients with simple needs. . I am a scientist and engineer, I have Hashimoto's and graves disease, and Hypoadrenalism, and reactive hypoglycemia, and PCOS, and insulin resistance.... Did I get them all? (Snort).
Maybe. I collect AIs as a hobby. Allergies, contact dermatitis, sleep apnea, exzyma, LPR... those just add character.

Now I have another question for you if you don't mind. When my TSH was 2.54 in Jan & in Aug it was 1.28 should it change that much w/o being medicated? I mean is it normal for it to fluctuate that much or does is clearly indicate there's an issue?

TSH IS A VERY UNRELIABLE TEST. It can be effected by estrogen levels, medication you are taking, illness, time of the month and more! If you find a doctor that follows the most recent American endocrine society recommendations a TSH of 2 in conjunction with positive Hashimoto's antibodies warrants treatment of the patient as hypothyroid.

Maybe you can find an integrative medicine MD that is willing to treat you. You do not have to have an ENDO treat your thyroid issues. Many of us have only encountered ENDUMs. There are thyroid Knowledgable Endos but they seem to be an endangered species....

I couldn't really find any info on that. Also you asked about which antibody test I had, on the results sheet they sent me it just says Antinuclear Antibodies Direct.

OH HADES THEY DIDN'T! This is not a recognized accurate thyroid antibody test. ANA which is what they ran can determine RA.

Go to a minute clinic and get a nurse practicioner to order the lab work for you. That is a test out of the dark ages as far as thyroid autoimmune disorders are concerned. You need the following lab tests run:

TPOAB - hasimoto's indicator
TGAB - HASHIs secondary indicator
TSI-Graves indicator
TRAB - Graves secondary indicator

Then it just lists neg where the lab reference should be, no other info but I can call the lab & ask what that includes. I will say I was so frustrated I asked them to mail me all my labs they've run, had I not I wouldn't even know this stuff.
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Old 09-14-2011, 05:55 AM   #9
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(HUG) Thank you so much!! I feel like I've been chasing my tail with this so I thought telling them what to run they'd just do it but no such luck. I'm gonna give this IM guy a shot, hopefully he can situate these issues fast & get me on treatment. My insurance company is probably equally confused with these tests, if they don't cover them I'm gonna be furious! Why in the world would they test me with that?! RA is clearly off the map for me & irrelevant. How nice of them to stick me for nothing! As far as the weight thing I'd love to drop 50lbs but short of surgery I've tried everything. I could starve myself a week & gain 10lbs. I started following the no white diet a couple years ago & lost 10lbs but that's the only thing I've lost a single lb on. I still follow that & run my elliptical every day so not much I can improve there.

Wow you're pickled with AI's aren't you? Poor thing, that's a lot on your plate to deal with! I take it your on Metformin for your pcos/insulin resistance? We tested for that but u/s said no cysts, testosterone was normal (high end of the range but within normal) & not insulin resistant. My dr still put me on 2000mg of Met every day, I'm not sure I should even be taking that or that high of a dose. I dropped it to 1500mg as that seems to be what most are doing but I didn't stop b/c I know there's other tests to dx that they didn't run so I very well could have it. Only symptoms I have are cystic acne, infertility & trouble losing weight. Cystic acne tells me something is jacked up with hormones but everything else the OB ran is really normal. What a mess we're in! I feel like I should be given a drs degree to dx ppl, I'd be rich & do the same quality work

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Old 09-14-2011, 10:00 AM   #10
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Re: Need Thyroid opinions, please help...

Yeah I am an AI melting pot!

Thanks to trial and error and being the type of dog with a bone patient that refuses to let go of an issue unless my MD can prove it. I found a great MD that treats my conditions and their symptoms.

You will get there eventually. It takes time. IT SHOULDN'T! But the nurses and MDs in my family say that there is just too much medical information out there in EVERY area for a MD to be a true expert.

I watch my SIL who is an OB she often works 80 hours a week. Babies can be inconsiderate and rarely keep their due date appointments. Both mine were impatient a 35 wk 10 lb boy and a 35 wk 8 lb girl. Seven years apart. My Hashimoto's activated during pregnancy 1. It took four years to get diagnosed and find MDs willing to treat my issues versus tell me to wait until my thyroid dies out. Once diagnosed and my MDs were in my corner it took another 2 years to stabilize things. Post pregnancy afte breast feeding you have to stArt all over again. Ugh! Just went through that.

My medications
175 mcg T4
20 mg hydrocortisone tAblets
Omeprozole 40 mg bidaily
2000 mg metformin
10 mg zrytec
Elidel
Metrogel

Super B complex
Fish oil
Magnesium
Calcium
Vit D
Multivitamin

Ugh! That is a lot. Give the dose delay and that some meds need to be taken x hours before and after this and that med. My MD and I worked out a schedule and I stick to it. With proper care and help you can manage anything. I pop 33 pills a day, they make me normal.
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Old 09-20-2011, 08:09 PM   #11
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Re: Need Thyroid opinions, please help...

Wow that is a lot!! If I could get back to normal & just have one baby I'd be ok with that. I'm obviously gonna have to get this thyroid thing situated first. Right now I feel ok except extremely tired all the time & brain fog but I'm sure that's due to the low cortisol. I'm just waiting for that hormone to start dumping again though. I've called all over trying to get in with someone else who knows thyroid & I'm not having any luck I'm at a loss & not sure what to do at this point. IM's/Endo's won't see you around here w/o the dr calling & setting up the appt with the last year of test results. As you see above my dr hasn't run enough for anyone to warrant seeing me. They called today & said my uptake scan was normal, thyroid absorbed 16.6% iodine. I saw that on the screen when I was there but didn't see the actual scans. I'll be requesting a copy though! I just feel like I'm going outta my mind!! It's crazy to me this is such a common problem yet no one knows about it. Makes no sense to me. Every test they read as normal is just more ammo that I don't have a thyroid problem. Maybe I don't but it's def something so figure it out. Thanks for letting me vent, kinda just feeling at the bottom of the barrel right now.

 
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