Just Found This Interesting Site On Thyroid Disease

[boymommy3]

http://www.stopthethyroidmadness.com/

I know every kind of medicine isn't' for every patient but I just found this site and thought others on here with Hypo issues may be very interested. You have GOT to read her "about me" or "my story" I can't remember which wording she used. It's at the bottom left side of the page.

I would love to hear others thoughts on this. I don't deal with Hypo, I have hyper, but I found this site very interesting.

[futurehope]

My thoughts are this:

I am convinced that the removal of my thyroid for cancer, and the subsequent dependence on Synthroid is no longer working for me. You can see by my bloodwork that I get enough T4 (which is a hormone obtained from the Synthroid), but that my body is not or cannot process the T4 pill into the usable form T3. My bloodwork show this. Consequently, my TSH is a bit on the high side, showing hypothyroidism, and my Free T4 is on the high side, showing a mild hyperthyroidism, while my Free T3 shows I have a mild deficiency.

I have been to three different endocrinologists about my thyroid conversion problem (using the Synthroid and converting it to usable T3 hormone). Two of them do not seem interested or care one whit. The other, bless his heart, did allow me to experiment, but I was unsuccessful. One of the two uninterested endos, the one I saw last week, suggested anti-depressants and a sleep study because it "may not be my thyroid causing the problems". IOW, it's my problem, not his and he has no clue what to do about my conversion problem.

It is a horrid state of affairs when the doctor has no clue how to help you so he suggests depression and sleep problems as the cause. I was asked just enough leading questions for the uninterested Dr. to suggest the antidepressant and/or the sleep study.

Apparently, medical science has no idea how to treat a T4 to T3 conversion problem. Consequently, I suffer with "hypo" symptoms constantly. It is disheartening to say the least. Most endos are so overwhelmed with the diabetics, that they have neither motivation or inclination to figure out my difficulties.

If you have a good endo sucessfully treating your thyroid difficulties, you are blessed.

[issie]

It's a Reverse T3 conversion issue. There is a old book about this problem ---called Wilson Syndrome. Very controversial. But, that doc was aware of the issues with conversion problems. From what I've read for complete relief of issues there has to be some T3 on board and it has a short half life and has to be taken throughout the day and in small doses. My doc said most people don't want to fool with the regular schedule of having to take it and therefore it doesn't get RX'd that much. But, if you are having issues and know this is the problem - might be worth asking about. I've heard of some that can only take Armour and non of the synthetic things will do. I have to have a biopsy in a few weeks so I'm trying to prepare myself for whatever I may have to in the near future. I however, seem to have more hyper thyroid problems at the moment.

Issie

[boymommy3]

Issie,

I have been hyperthyroid for years!!!! (on and off) but right now it's just my TSH that is low. It was virtually 0 in December. It's a little higher now but not much, BUT my FT3 and FT4 are normal. Like really normal. Not high or low. I also only have 1/2 a thyroid as I had a hyper functioning nodule about 8 or so years ago and had surgery to remove that half.

My Endo is currently looking into the possibility that it's pituitary instead of thyroid. However, when he palpitated what thyroid I have left it was very tender and sore, so that leads me to believe that it is generating from my thyroid.

[bkweavers]

I am also on the Stop the thyroid madness website and I have her book. To all of you with thyroid issues, don't stop fighting for your right to feel better! From my experience with my daughter's endocrinologists and what I've read, there are so many doctors who aren't listening to their patients, only looking at blood test results, and not looking at their symptoms. Just last year, my daughter relapsed completely with her POTS. She had just been to the endocrinologist and her levels were shown to be normal. She was sleeping 16+ hrs. every night but still was exhausted. I had a huge argument over the phone with the endo who refused to even listen. All she kept saying was, "her blood levels are normal." Finally I asked my daughter's POTS doctor to let us try a higher dose. Looking back now, I'm convinced her relapse or crash was due to not enough thyroid med. I was just looking at her picture of before the increase and after. The "before" pic shows a fatter face, thinner hair, and very thin eyebrows. The "after" pic shows a thinner face, thicker eyebrows, and thick hair!

I've found since this time that blood test results can be off if a person has an illness also. I've also learned that you need to be treated according to symptoms and that many people out there don't even go to endos but a doctor who is willing to listen and learn. Also, many people can't tolerate synthetic thyroid medication and so go on natural thyroid like Armour. There are many other kinds of natural thyroid out there and many people feel much better on them. I'm on Armour thryoid myself.

The frustrating thing about having autonomic illness and thryoid is that the symptoms are so much the same. Right now, my daughter is having problems with insomnia so I'm beginning to wonder if maybe we need to decrease her thyroid med just a little. But, then again it could be the POTS.....

Brenda

[bkweavers]

@future hope, if you've had problems with your adrenals, you also should be treated for those. I would strongly suggest getting the book, Stop the thyroid madness and look into things. You don't need to go to an endo to be treated. I'm going to a medical doctor, an internist, who strongly believes in a lot of what this book says. I found out my adrenals were off along with my thryoid. It could be the reason that you're still not feeling good.

Brenda

[Anoj]

i have hashi's. i have trouble upping my synthroid, though i know i should. my TSH is relatively high for me (in the 2.5 range). any stimulant, including synthroid, makes me too dizzy to function. however, i am thinking of upping it anyway and just white-knuckling it until my body adjusts, which i hope it will. my goiter is larger, and still have nodules. doc mentioned adding T3 last time i was there. altho my endo isn't fully convinced of many of the things discussed in this thread and on the stop the madness site, he was willing to listen and experiment. i tried the golden answer (armour), and it didn't help. of course, i didn't stick with it for long. upping my synthroid is on my iist of things to do, after i finish weaning off of zoloft (if i can ever get there).

[futurehope]

Everyone who responded to my difficulties....I thank you. It is difficult. I have tried compounded time-release Cytomel throughout the day, and was having diarrhea attacks from the meds. The attacks stopped after I stopped the T3. So I am definitely not an easy case.

Yes, it is possible my adrenals are weak, though still functioning. This endo did have me check my serum cortisol, but he neglected to tell me not to exercise before they drew the blood. I read on the internet afterwards that exercise affects the results. He also tested for ACTH.

But, from what I've read, he should have done the saliva cortisol tests in the AM, midafternoon and PM, not a serum cortisol.

Once I emotionally recover from this poor experience with the endo, I will move onto someone else. I need a break from doctors right now. Half of them are worthless. Sigh.

[Orthohypo]

i have hashi's. i have trouble upping my synthroid, though i know i should. my TSH is relatively high for me (in the 2.5 range). any stimulant, including synthroid, makes me too dizzy to function. however, i am thinking of upping it anyway and just white-knuckling it until my body adjusts, which i hope it will. my goiter is larger, and still have nodules. doc mentioned adding T3 last time i was there. altho my endo isn't fully convinced of many of the things discussed in this thread and on the stop the madness site, he was willing to listen and experiment. i tried the golden answer (armour), and it didn't help. of course, i didn't stick with it for long. upping my synthroid is on my iist of things to do, after i finish weaning off of zoloft (if i can ever get there).

Anoj, my doctor says that most of her Hashi's patients do not do well on Armour. I think it has to do with the body attacking the thyroid more because of the natural T3 and T4 hormones from Armour in the system. She has me on Synthroid and Cyotmel. We try to keep the TSH down between 0.5 and 2.0 or else I feel lousy. I have not been on stopthethryroidmadness yet to see if this has been mentioned, but from my understanding you better MAKE SURE YOU GET THE NAME BRAND hormones! Generics only have to be 70% of the actual stated levels of medication and this is horrible for hormones! It's more expensive, but you can't afford to have aberrant fluctuations in your thyroid levels causing more complications.

Edited March 17, 2013 by corina
medical advice

[lynnie22]

Future hope, reading your first post sounds just like me! I'm so glad to have found this. I am also convinced that the removal of my thyroid for cancer created all these problems I have been having, and may be one of the reasons for my POTS. I also have a T4 to T3 conversion problem, and of all the endos I went to (about 10), NONE of them admitted to ever having heard of this. This includes one at MAYO, and the rest in NYC. My endo who certainly tries to find the reasons for my problems still is resistant to believing that it is a true conversion problem. He told me that he was worried that the T3 would cause palpitations, especially in my case where I already have them. So I did not take the cytomel. I have "Stop the Thyroid Madness", and have considered Armour, although every endo I have gone to is completely against it. Why is that?? I have also looked into possible adrenal problems, especially since I have had this unpredictable blood pressure, thinking it is being caused by too much adrenaline. But so far, tests are normal. Issie, that is interesting about Wilson's Syndrome.

Seriously though, where do we find more naturopathic endos who can diagnose and treat these thyroid issues differently?

[kitt]

.

[issie]

Good info Kitt --brain seemed to be in gear pretty good. Sorry, you're having such a time. Hope the testing will find something that will help!!!!

Issie

[futurehope]

Lynnie22,

Bless your heart. I can so relate to everything you wrote.

I guess my alternative is death (if I refuse to take hormone at all), so from that perspective, I'm blessed to be here and able to function on some level.

I managed to survive all right on the Synthroid from 20 years old up until 50. After the other hormones declined (estrogen and such), it has been downhill for me. BTW, I take name brand Synthroid only. I do not trust generics.

It is unbelievable that doctors at Mayo do not know what to do either. That tells me that there are no easy answers.

My one endo who allowed me to experiment with timed-release T3 taken in split doses of 2.5 mg throughout the day was concerned about my sensitivity to medications and possible palpitations. That is why I had the T3 compounded to a relatively low 2.5 mg dose and created with a "time-release" chemical added to the hormone. I was unsuccessful. I got diarrhea.

I still have the pills, so I am seriously considering popping one again to see what happens.

Then again, I may be getting diarrhea from the gelatin capsule itself, or the time release med that was mixed in, or the thyroid hormone formula itself. I have MCAS, meaning, I am sensitive to many things.

Anyhow, from reading these posts.....I can sympathize with anyone going through thyroid madness.......I can conclude that as of right now, most medical practitioners do not have the knowledge as to what to do, and are unwilling to experiment with a POTS patient who is sensitive to any changes.

I may go back to my wonderful experimenting endo to have my cortisol levels checked out via a salivary cortisol test. My cosyntropin stimulation test of my adrenals was normal, but my adrenals react poorly to stress as determined by an insulin tolerance test.

[Anoj]

i have hashi's. i have trouble upping my synthroid, though i know i should. my TSH is relatively high for me (in the 2.5 range). any stimulant, including synthroid, makes me too dizzy to function. however, i am thinking of upping it anyway and just white-knuckling it until my body adjusts, which i hope it will. my goiter is larger, and still have nodules. doc mentioned adding T3 last time i was there. altho my endo isn't fully convinced of many of the things discussed in this thread and on the stop the madness site, he was willing to listen and experiment. i tried the golden answer (armour), and it didn't help. of course, i didn't stick with it for long. upping my synthroid is on my iist of things to do, after i finish weaning off of zoloft (if i can ever get there).

Anoj, my doctor says that most of her Hashi's patients do not do well on Armour. I think it has to do with the body attacking the thyroid more because of the natural T3 and T4 hormones from Armour in the system. She has me on Synthroid and Cyotmel. We try to keep the TSH down between 0.5 and 2.0 or else I feel lousy. I have not been on stopthethryroidmadness yet to see if this has been mentioned, but from my understanding you better MAKE SURE YOU GET THE NAME BRAND hormones! Generics only have to be 70% of the actual stated levels of medication and this is horrible for hormones! It's more expensive, but you can't afford to have aberrant fluctuations in your thyroid levels causing more complications.

interesting about the armour ... endo mentioned adding cytomel last time i was there. it's a possibility for the future. i take brand-name synthroid. we too try to keep me at well below 2 to keep the goiter/nodules under control. it's always been difficult for me to take the meds, though, so i'm only on the lowest dose.

[lynnie22]

Hi Futurehope,

I have been dealing with this for six years since my surgery -- now I'm 64. There was always a high FT4, but slowly the FT3 became lower, although my TSH is normal. It is clearly a conversion problem but there is no doctor so far that will deal with it. I don't know if Armour would be the answer, since there is so much sensitivity in both of us to anything, but it is a more whole form of thyroid hormone, although for me and probably you, the synthroid would have to be reduced to accommodate for the extra T3. Does your body convert it at all? Of course getting a doctor to prescribe Armour is virtually impossible within the endo community, at least in NYC. My endo despite his failings has been testing everything and has offered to take scans of my pituitary and adrenals to search for some tumor. Your endo sounds good and like he's trying to help.

You are the only other person I have spoken to with the same problem and outside the realm of my endo's experience.

A friend of mine who is a nutritionist has suggested taking supplements that help convert T4 to T3. At the moment I don't remember what they are but can find out if that will be helpful. I certainly need to find out in any case. They do say if there's a problem with the thyroid hormones, look to the adrenals so that salivary test sounds like a good idea. We POTS people in any case seem to have adrenal issues.

Good luck and let me know how you are doing.

By the way, Kitt, that was a good piece of info about the 24 hour urine test. That is what my POTS doctor has done to test for metanephrines.

[boymommy3]

Wow, I am so sorry that you guys have such a hard time. It does however, make me feel less alone.

I have had thyroid issues for 15 years. I seem to always be hyper functioning. But it's weird....My Tsh is repeatedly low and even when it's normal it's usually a low normal, however, my FT3 and FT4 are quite normal. So that leads my docs and endo's I had my antibodies checked 2 years ago and they were ok. But this week my endo said that even though they were ok last time they weren't perfect. He is checking me for everything under the sun right now.

He is looking further into pituitary issues and adrenal issues since we keep getting conflicting reports between what my pituitary says my thyroid is doing and what my thyroid is actually saying.

I did the 24 hr urine but they didn't tell me I had to bring the urine in before 8 am. I hope that didn't mess the test up.

I have also had my cortisol and ACTH checked, but it was a blood serum cortisol and it wasn't even a am and pm. It was just am. So not sure that was done correctly. I do know that he is checking my them both again with this last round of blood work ordered.

Kit...I don't mean to sound ignorant but what is this HPA axis disorder? And by CFS do you mean chronic fatigue?

[futurehope]

Boymommy3,

HPA - hypothalamus, pituitary, adrenal, I think. They all speak to each other to help sustain us.

Update on my prior comments:

Surprisingly, my Free T3 , Free T4 and TSH as of right now are the best they have ever been.

The TSH is right where I want it as are the two other tests. I have no idea what caused me to finally convert the Synthroid's T4 into an adequate amount of T3? My exercising, maybe?

Anyhow, after years where the above tests came out fluky, I've finally arrived at normalcy.

The problem is, I still am cold, and get weak attacks, along with tired attacks. So, in my case, the endo was right......it is not my thyroid hormone causing the problems. It is something else......

Time to talk to my mast cell doctor about all this. I still have not arrived where I want to be in terms of how I feel. All for now. Good luck to everyone out there dealing with thyroid issues.