Thyroid or something else??

[TappedOut]

Hi All,

So I went to a new endocrinologist today. I am type 1 diabetic, so I was going for diabetes only, as I have another doc for thyroid. However, this doc, and I didn't even know, also looks at TPOab, Tgab, Free T4 and Free T3, unlike mostly every other endo - yaaaaaay!! BUT, he said my 17 symptoms along with my low FT3 , elevated creatine kinase, and even my elevated TPOab can be attributed to something else. He mentioned CUSHINGS, possible ADDISONS, and a few other autoimmune diseases.... he said my FT4 and TSH looked good, so he wondered if my symptoms are some other autoimmune disease.

My question for you is: is there a telltale sign that this is thyroid? Iunderstand that symptoms overlap, but are there symptoms or symptom combinations that are certifiably tryoid, that you know of?

I'm currently titrating up on Nature Throid. Not seeing any difference, but for slight improvement in cognition, but I'm still with fluid in the eye socket area and thighs, still very fatigued, eyebrows are essentially gone, hair still coming out. So I'm doubting myself for thinking this has to be thyroid, but then, if all seems so thyroid!!! Please help, if you have any ideas. (My labs are in my profile, if interested)

Any thoughts?

Thank you all.

❤️TappedOut

[greygoose]

Oh dear! Tell that doctor to get back to his diabetes and leave your thyroid alone! High TPO antibodies are not, and never have been, caused by Cushing's or Addison's! Every autoimmune disease has its own antibodies. TPOab belong to the thyroid, not the adrenals, nor anywhere else. And a low FT3 is a pretty good clue that you are hypo and are going to have symptoms.

The problem with hypo symptoms is that they're non-specific. I don't think there's anything that can't be caused by 'something else'. Which is why they should be looked at in conjunction with blood test results. Besides, when you have a whole bunch of these symptoms - and there are over 300 known symptoms of hypo - which is the most likely scenario? That you have seven different diseases, all with one symptom each? Or that you have one disease with seven symptoms?

And, there aren't many things that cause loss of eyebrows...

[TappedOut in reply to greygoose]

Hehe!! You made me smile Greygoose! 🙊

That's what I was thinking but I just didn't have the energy or vocabulary to express it. He was nice enough though that he said if I wanted someone else (the one I'm seeing tomorrow, penned a chapter in the book, "stop the thyroid madness") , that he is not offended. So I might just use him for the Diabetes. Or not. He did order tibc, ferritin, and serum iron, so that's good for me to know what my full iron panel is, since no one else even functional docs, have ordered the full iron panel. I'm not worried about him not ordering saturation %, bc one can decipher it from the other three orders.

He did say, "...but if you are feeling better in the Nature Throid, stay on it...what matters most is how you feel, but your FT4 and tsh look good. Your FT3 is quite low. We will see..."

But thank you....I understood what he was saying, that many of the same symptoms, even in their clusters, are within other diseases; but I was thinking and like you said, but a persistently low FT3, an elevated TPO....TOGETHER, would have to indicate thyroid. And the eyebrow, sure I have very low ferritin, but it seems so specific to thyroid, the outer eyebrow loss. 🤔 But your note on the TPO, that's most helpful and definitive so I feel better knowing that that is telltale.

I just wanted to check with the site as I've received the most consistent and useful info here....thank you.

I sure hope, even though the thyroid doc I'm seeing tomorrow is a contributor to STTM, I still hope he's able to help me. I've been disappointed so many times, I'm not hopeful there either, but at least I don't have to open my now standard, "have you seen that book or website 'stop the thyroid madness', by chance?"

☺️

[greygoose in reply to TappedOut]

Well, good luck. Let us know how you get on.

[TappedOut in reply to greygoose]

Thank you!! I sure will....

[Clutter]

TappedOut,

Elevated TPOab means you have autoimmune thyroiditis (Hashimoto's). What else does your endo think it can possibly be due to? Thyroid peroxidase should be confined to the thyroid gland. Due to injury yours has seeped into the blood and that's why antibodies have formed to fight off the invader in the blood.

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Thyroid replacement treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

Low FT3 will be why you have hypothyroid symptoms. thyroiduk.org.uk/tuk/about_...

If you are taking NDT FT3 is the important level and in the upper third of range is usually good for most people. FT4 is often low in range, sometimes even below range, when taking NDT and it's not important as long as FT3 is good. TSH is often suppressed <0.1 when FT3 is in the upper third. Getting FT3 good may help reduce the fluid in your thighs.

Has endo done cortisol serum or saliva tests? Cushings means you have excessively high cortisol and Addison's means you have excessively low cortisol. They both have different symptoms and treatments which you can Google.

Google "creatinine high". I'm quite sure it's nothing to do with thyroid. I would also doubt that fluid in the eye socket is thyroid related and suggest you consult an optician or optometrist.

[TappedOut in reply to Clutter]

Thank you....yes my saliva test back in April showed low adrenal and slightly elevated cortisol at different times of day.

The late and thyroid dedicated, Dr John C. Lowe and Dr Richard K. Bernstein speak to the fluid in the orbit of the eye, as well as facial fluid being thyroid related, also known as "fibroblasts", where the vessels are compromised. This can also lead to worsening of or development of carpel tunnel, another of many hypoT symptoms. Both docs and I believe Broda Barnes noted that, where the patient has an inverse between creatine (not to be confused with creatinin) kinase and FT3, this is a significant hypoT factor. I have that as well, an elevated CK and low FT3, Inverse. Before the tsh labs were introduced, the fluid in face, eye orbit, and extremities with high CK, were used to diagnose hypoT.

My concern though, was whether all of this could be something else, as three different docs have said that since my FT4, t4, and tsh are within range, its probably not thyroid that I'm dealing with. But as you and another member pointed out, all things and symptoms aside, and even if the symptoms appear in the same clusters in different diseases, elevated TPO is directly thyroid. I didn't know that, so knowing that now, gives me more confidence that I'm on the right tract of getting help. TPO is the linchpin so to speak, so that is significant info. Thank you.

I sure do appreciate your time and reply.

I'm currently titrating myself on Nature Throid. I'm only at 1/2grain, due to increase in the next six days as I've been going very slowly....ive had my full iron panel done, so hopefully that will give me more intel. I think if I up my iron, perhaps my conversion will improve and thereby my Nature Throid will do its job. I hope. I just wanted to be sure that thyroid is the lane I should be driving....Especially since o haven't improved yet, but I know it takes awhile and I'm on a low dose.

Thank you again for your word.

❤️

[TappedOut in reply to Clutter]

Ohh Clutter, not creatinine, but creatine kinase. The inverse of Creatine Kinase and FT3, indicate hypoT.

If you're interested:

ncbi.nlm.nih.gov/m/pubmed/1...

🙂

[helbell]

Tapped Out, I second Clutter and Grey goose and strongly recommend writing or printing out to focus on and break it down into bullet points. I say this because of brain fog...what was I talking about..oh yes...If you have nothing else urgently obvious, assuming medics have covered all bases, start with the simplest things first...hypot and replacement.

Good to read about amenable endo recognising your low free t3 and supporting your self-dosing. You might read folks saying I took this or that replacement and never looked back but it's certainly not that fast for everyone by any means - more of a peaks and troughs kind of path, so hang in there.

Going on my own experience, and it seems plenty of others too, one can be very symptomatic with all basic markers in range. Your symptoms alongside the presence of thyroid antibodies and low t3 is dead giveaway. I was housebound with a mass of symptoms before I fell out of the lab range. That was after eighteen months of me shouting it's my thyroid! My docs thought I was mad, I thought I was dying and eventually questioned my own sanity. What I still find amazing is the huge difference between patients in range and severity of symptoms.

Sorry to read you are coping with diabetes alongside. I can't offer any knowledge there although I am struggling to manage hypoglycemia so my next test is saliva cortisol and dhea.

[TappedOut in reply to helbell]

Thank you hellbelll....yes, I always take a typed sheet of my top three concerns and labs wanted, and why, in small print beneath. Most docs appreciate it; some don't even look me in the face at all, so.....

But yeah, I use bullets to keep it structured and keep myself on point. I've done that since I was about 18 Years old, as it seems after two or three concerns, no onesnlkdtening anyway. 😂, especially as short as the average US doc visit is (4-8 minutes, according to the news networks).

I hear you about questioning ones own sanity. I feel so badly to hear you went through that; but be it not in vain- I hope help others the way you, and this site, have helped me. There is no way I can thank you all enough but to shadow your goodness.

❤️