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Hypothyroidism

kimis

By kimis
in Related Issues & Disorders

Recommended Posts

kimis Collaborator
kimis
Posted

Hi.....I have trouble navigating myself around the thyroid sites....and I really want to talk to someone who has experience with hypothyroidism. I am so confused about the whole natural vs. synthetic issue. I have been reading so much conflicting info that I think my head is going to pop off! I also need some hope! Is there anyone who feels good on synthetic or natural replacement that can shed some light on this subject for me? I have Hashimoto's, and my symptoms started 4 months after my gluten-free diet started. I am on 25mcg of unithrois so far....I feel horrible still...and I can't stop gaining weight despite my very very best efforts! HELP!!!!!!!!!

stupid autoimmune diseases....

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

I know what you mean about those thyroid websites :blink:

I found out I have hypothyroidism back in August. I started taking 100mcg of Synthroid and I'm still on the same dose. My numbers are back to normal and I feel pretty good. I had an ultrasound that showed a goiter (but no nodules, so that's good news!) and I saw an endocrinologist who wanted to run an ACTH stim test... it came back perfectly, perfectly normal. The best thing I've noticed is that I no longer feel even remotely depressed... what a relief :)

Unfortunately, I think it takes time to figure out what works for YOU. Have you had your TSH and free T4/T3 checked since you started taking medication? It's possible that you just need a higher dose. It's also possible that you have something else going on. A lot of autoimmune disorders cause fatigue :( Malabsorption (due to a wide variety of GI disorders) can cause weight gain because your body thinks you're starving. I wouldn't assume your thyroid is to blame. I'm still having some issues with constipation, but I recently saw a gastroenterologist who's going to do an endoscopy for mastocytosis (too many mast cells), which could explain some other symptoms I'm having... fatigue, an itchy rash that comes and goes, abdominal pain, episodes of anaphylaxis, etc...

Hypothyroidism is one of the most common autoimmune disorders. It sneaks up on you and causes a wide variety of symptoms... it's tempting to think that everything will be fine if you can get your thyroid hormones back on track, but IMO it's frequently not that simple.

MaryJones2 Enthusiast
MaryJones2
Posted

It sounds like you are either on the wrong medication or the dosage isn't correct (too much or too little). It's important to know your T3 level and if your body can covert T3 to T4 properly as that will also help determine the best medication. Some medications only have T4 (I think unithroid is T4 only). I take Armour (natural) and love it. But everyone responds differently so you'll just have to try a few until you find the right one.

It can also take several months for things to stabalize and get the dosage right. You should discuss it with your doctor because thyroid medication should be helping :)

SallyC Newbie
SallyC
Posted

You are not alone. I have struggled with thyroid issues for over 30 years. I always wonder which came first the thyroid issues or celiac? I know those thyroid sites can be confusing but have you tried www.realthyroidhelp.com? They have a moderator that also has celiac. They also can make suggestions according to your test results and tell you what tests to ask for. It takes awhile to read through all the information on the site, but when you have the issues we have the more you know the better off you will be. You can start helping yourself now by keeping copies of all test results and medical records. After years of not getting the help I need and being told my thyroid levels were fine, I found a nutritionist who is helping restore my health with natural supplements. I also still take synthyroid. I am on the road to better health. It is a long journey and I wish you luck.

kimis Collaborator
kimis
Posted
  • Author

I am looking at my lab slip for next week....my doc checked off THS and T-4 (thyroxine, free). Why would T-3 free be important....why wouldn't he test me for that? I am seeing an endo at the end of the week for a pituitary evaluation...I have a tumor on that gland that is growing.....yikes! I was suprised my pcp didn't refer me to an endo for the Hashimoto's, but I just figured my dr. knows more than I do. It really bothered me to read on STTM that the patient needs to tell the Dr what to do......I didn't go to medical school.....I don't know what to do!

Mother of Jibril Enthusiast
Mother of Jibril
Posted

It's great if you can measure both free T4 and free T3 (although a lot of doctors don't do it routinely)...

Normal T4 + Normal T3 = truly normal (if you're still having problems it's probably not your thyroid)

Normal/High T4 + Low T3 = conversion problem (in which case you could try Armour or a synthetic T3 medication like cytomel)

Low T4 + Low T3 = possible pituitary gland problem (especially if your TSH is also low/normal)

There's a pituitary hormone that your endocrinologist can measure (PTH, I think)... realthyroidhelp.com has some information about hypopituitarism. Here's another link from Mayo Clinic:

Open Original Shared Link

IMO, I don't think you need to "tell the doctor what to do," but it does pay to be proactive... ask questions, make suggestions, and definitely look for another doctor if you feel like the first one is just not listening or willing to do what you need/want. You're paying them to help you. :)

nutralady2001 Newbie
nutralady2001
Posted
I am looking at my lab slip for next week....my doc checked off THS and T-4 (thyroxine, free). Why would T-3 free be important....why wouldn't he test me for that? I am seeing an endo at the end of the week for a pituitary evaluation...I have a tumor on that gland that is growing.....yikes! I was suprised my pcp didn't refer me to an endo for the Hashimoto's, but I just figured my dr. knows more than I do. It really bothered me to read on STTM that the patient needs to tell the Dr what to do......I didn't go to medical school.....I don't know what to do!

Free T3 is the active hormone ........... it is what your body uses for energy/ get up and go

It's not really telling the doctor "what to do" but as Mother of Jibril said being proactive

Why did doctors miss my Coeliac Disease for nearly 50 years? It didn't even enter my head til talking to some-one on a thyroid forum 3 years ago. All those years when I could have gone in and asked to be tested instead of getting and accepting an IBS diagnosis

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nasalady Contributor
nasalady
Posted
Hi.....I have trouble navigating myself around the thyroid sites....and I really want to talk to someone who has experience with hypothyroidism. I am so confused about the whole natural vs. synthetic issue. I have been reading so much conflicting info that I think my head is going to pop off! I also need some hope! Is there anyone who feels good on synthetic or natural replacement that can shed some light on this subject for me? I have Hashimoto's, and my symptoms started 4 months after my gluten-free diet started. I am on 25mcg of unithrois so far....I feel horrible still...and I can't stop gaining weight despite my very very best efforts! HELP!!!!!!!!!

stupid autoimmune diseases....

:lol: I probably would have said "%$&*($#@ autoimmune diseases!"

But then I have seven of them. :)

I'm so sorry to hear about your experiences. Unfortunately thyroid autoimmune diseases (e.g., Hashimoto's and Graves Disease) are extremely common among those with celiac disease.

I take 200 mcg of Unithroid per day. I have not found a doctor yet who will let me try Armour...they say it's too difficult to titrate properly.

I do feel pretty good on 200 mcg; it's a high dose, but my thyroid is basically dead. Your dosage sounds quite low, but you should discuss this with your doctor. I know immediately when my dosage is wrong because I start falling asleep in the middle of the day and I'm cold all the time.

As previous posters said, don't be afraid to be proactive! It just involves asking the proper questions....not actually telling your doctor what to do.

I hope you start healing soon!

JoAnn

Jenny (AZ via TX) Enthusiast
Jenny (AZ via TX)
Posted

I am hypothyroid as well. Both my Free T3 and Free T4 were low and my TSH was just a little high. I am taking Armour and a T3 which is compounded. For me, the T3 makes a huge difference.

kimis Collaborator
kimis
Posted
  • Author

you guys are awsome! These are the responses I was hoping for.....and all this info really helps me! Thanks for letting me pick your brains so often....I knew this would be a great place to ask a question.

georgie Enthusiast
georgie
Posted

I take Thyroxine and T3. ( t4/t3). On Thyroxine alone I felt dead. I take 100mcg T4 and 30mcg T3. Everyone is different and you just have to try a few combinations to see what feels best for you. I did try Armour but prefer the T4/T3 now. I also have HypoPituitary + autoimmune diseases. BTW - The Stim Test is not always an accurate test for Secondary Adrenal Insufficiency. The correct test is the Insulin Tolerance Test or the Insulin Stress Test as it may also be called. If you get symptoms of Addisons Disease then keep asking for that to be checked. Without my Addisons treated I could not metabolise the thyroxine and felt ill.

I gained weight when I went gluten-free but that is your body healing and absorbing better, and needing less food. And lots of the gluten-free food is very high in calories.

  • 2 weeks later...
kimis Collaborator
kimis
Posted
  • Author

I got back my last test results after being upped to 25mcg of unithroid and THS and T4 were normal. I went back to my Dr and told him to test my T3 cause I still didn't feel right. After he laughed he gave me the test.....He called last night to say my T3 is low. He said he didn't know what to do and to go see an endo. I tried looking up this info and it is really hard to weed out all the crap. I know it could be a conversion problem....but what does that mean? Any ideas?

Mother of Jibril Enthusiast
Mother of Jibril
Posted

T4 is the "storage" form of thyroid hormones and T3 is the "active" form (what your body actually uses). Apparently... and I say apparently because a lot of doctors won't test T3... most people taking T4 drugs (Synthroid, Unithroid, Levoxyl, etc...) are able to convert to T3 on their own. If you're not, the quick solution is to take a drug that already has T3 like Armour (natural) or Cytomel (synthetic). Another way to go about it is to figure out why your body isn't converting and fix that... but good luck finding a doctor who's interested! It's hard enough finding someone to test T3 and prescribe T3 medication.

Another thing to think about: what are the symptoms that are still bothering you? It's possible that they have some other cause... vitamin deficiency (depression, fatigue), GI disorder (constipation), Sjogren's (dry skin), alopecia (hair loss), RA (joint pain), lupus (fatigue, joint pain), etc...

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