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-   -   Hope to get some answers (http://www.lowcarbfriends.com/bbs/thyroid/820625-hope-get-some-answers.html)

DixieBelle 01-09-2014 09:30 PM

Hope to get some answers
 
Hi all,

Suppose to have had my appt today. Nurse called this morning said doctor was sick and could I come in two weeks. I started crying hysterically and tried to explain that without a bump in my cytomel dose I am gaining weight (32lbs since she decreased it in August), crying all the time and exhausted! She told me to come tomorrow(Friday). Praying the blood work I got Monday shows that my body isn't responding to this lower dose of cytomel. I was doing so well back in the summer, then the darn excess sweating started and I complained to her so she lowered it. Nothing has been right since. I will post what happens tomorrow. Thanks for sharing your stories. It is keeping me going to fight for my health.

Leo41 01-10-2014 01:38 AM

Good for you in being pro-active! It's really easy for medical staff to schedule appointments at their convenience, etc., but if you need more Cytomel, that's a critical issue that should be addressed ASAP!

If you've already had your labs, any physician can prescribe, and every doctor has someone who 'covers' for him/her in emergencies (as when they are sick, etc.). I once had an allergic reaction to a prescribed antibiotic, and my doctor was away, but the doctor who was covering for him called me and resolved the problem.

In fact, my sister is a medical secretary, and I know from her that if your doctor just has the flu or something, he/she's likely in touch with the office, can prescribe over the phone, and the staff can handle the script.

I hope you get this resolved.

DixieBelle 01-10-2014 02:11 AM

Thanks, Leo! I hope so too. She is only doctor I know who will even touch cytomel. I don't understand why docs are so against it. I work in pharma (as a rep) and so many of my docs can't believe I take cytomel. They think I will get cancer?!?!? Hey, if ou have no T3, it's kinda necessary lol.

My doc is in private practice so only provider there plus I think they didn't think I was feeling this bad. I am alway coming to appts from work so I'm dressed business professional and I always have on brave face (trying to make best if bad situation) so I know my crying outburst this last morning, on phone, was shocking to them.

It's just frustrating bc I was really making good progress when I first went to her last summer. 200mcg Tirosint w 10mg of cytomel and I lost 24lbs in 8.5 wks. And I felt good! I was doing things w my friends and enjoying life. I shouldn't have complained about the sweating. I mentioned it to my friend the other day and she told me that maybe I was hot bc I was actually being active and my body needed to just let my body adjust. Who knows. I just know my sleep is off (cause I am up half the night and sleep in evening time) and I'm retaining water like a reservior!

Is water retention really a hypo symptom? Cause I feel like when my thyroid is off, I can feel myself expanding over days. It's like my body and face change in such a shape that I can't believe it. Has that happen to ou?? Or anyone else out there???

Leo41 01-10-2014 04:32 AM

DixieBelle-

Yes, water retention is a hypo sign, and it's often a sign that a person is under medicated.

Even if your doctor is solo, she must have another doctor who 'covers' for her when she's unavailable. My primary is solo, but if he's away or sick, there's always another doctor 'on call' for established patients.

Doctors are 'afraid' of Cytomel because T3 therapy is relatively new (10 years or so), and most of them learned in medical school that T4 converts to T3 in the body, so a person only needs T4. That some people have 'conversion' problems is a new concept--and not accepted by some.

Let me give you an interesting example. I take Cytomel (25mcg) and am tested and treated by a wonderful endo. When my primary does periodic lab work, he also tests my thyroid, and he used to order TSH, T4, and T3. He recently became associated with an 'umbrella' medical group that is rapidly taking over many medical practices in my area. On my last blood tests, he used this group's regulations and tested ONLY TSH and T4. That makes no sense, since my records show that I take Cytomel, and testing T3 level would be important. But there's a reluctance to even admit that T3 is ever an issue for anyone. I'm just grateful that I have a good endo.

By the way, your doctor may also have been scared by your rapid weight loss on the higher dose of Cytomel. Even those doctors who prescribe it, know that T3 is an extremely powerful hormone that can cause serious cardiac problems if the dose is too high, so they tend to be very cautious. I almost always have extreme symptoms (and a T3 that's in the basement) before my endo increases my dosage.

DixieBelle 01-10-2014 02:13 PM

I'm back from doc. Leo, you will find this interesting! hope you can offer some insight and thinking what im thinking. Here we go....

Test results:
TSH: 0.07 Range: 0.4 - 4.50
FT4: 1.8 Range: 0.8- 1.8
FT3: 4.5 Range: 2.3 - 4.2
Thyroid Antibodies: 892 Range: <35

Leo, I immediately thought back to reading from posts in the past. Specifically, from you and Pam (I think that is her name) and reading how you all have said everyone's "normal" is different. I can't recall the ratio for T4 to T3 you all spoke of. I want to say you all spoke of it needing to be 20 ???

Doctor and I decided to put me back where I was in summer. She said, "if you sweat, you sweat. Lets see where this takes us. If you start going back in right direction and you feel better we can keep going. I don't like to treat based just on numbers bc obviously you don't feel good. We will get you better!"
So I'm going back to Tirosint 200mcg and cytomel 5mg with other 5 in afternoon. :jumpjoy: and she suggested not to go back to compounding it so I will just at my local pharmacy.

Now to the antibody issue. :annoyed: It is higher that last time. Now at 892. In September when I was first tested, 763. But I know why. I had started feeling lousy at that time and didn't give a hoot about eating so strict and I have been out of my probiotic since November 1. Now I have two month supply of it and I will pick up my new scripts in morning and I got a proper protein powder I can use with my gut issues so I won't be scrambling when I am hungry and need something quick to eat and grab something that is on my food intolerance sheet ( which is everything under the sun!!)

Leo and anyone else care to respond, please do!!!! I so appreciate any and all input!!! :)

Ronnie51 01-10-2014 03:00 PM

I had no idea that elevated thyroid antibodies had anything to do with diet. I would like to learn more, as several years ago, mine were up to 2000 (ugh). I'm been on Synthroid 50mcg since then.

DixieBelle 01-10-2014 05:10 PM

Hi Ronnie. I'm learning about all this too. Wasn't diagnosed w the hashi part till months ago, but clearly I have had it for years (diagnosed w hypo in 1996). This new doc is first to test me.
From my research, any immune disease starts in the gut. Not to get technical, bc I will confuse us both, but if you google "leaky gut hashimotos" and go from there you will be amazed at the info you find and how gut permeability and food intolerances/overuse of antibiotics info you will find.

She said all that inflammation from the gut can cause swelling, rashes, etc. I wouldn't have believed it, but I will quickly share a story that explains why I do think it is so very true:

A few yrs ago I had a depressive spout (i have depression and anxiety too). I was in bed without food/fluids for about 4 days. Just sleeping and occasionally watching tv. Went on from a Thursday evening to around 6pm Sunday. My mom shows up and when I opened the door she said, "you look like you have lost 30lbs". I go to mirror and sure enough my face, stomach everything was thinner. I didn't have scales but do have a wide variety of clothing sizes in my closest everything from ac4 to a 16. During this time I was wearing a 14. Went to closet and put on 14 pants n they fell off. But a 10 worked perfect. I remember going to fast food place and getting my usual number 2. Next day I was back in a 14. Now at the time I didn't think much about it bc leaky gut and hashimotos wasn't on my mind, but I do believe based on that experience, something about that situation means something and I think this is it.

Thanks for posting! Let me know what you find!

Ronnie51 01-10-2014 06:14 PM

I believe that there is a connection between intestinal health and every aspect of one's overall health. I remember when I was a lot younger, I used to get very bad intestinal cramping often after I ate...it would be intense for about 20minutes and then subside. I lived with it, and many years later when probiotics came into fashion, I started taking them. The intense cramping went away, although I continued to have issues with (ahem) flatulence/alternating constipation & diarrhea which the probiotic didn't seem to help (sorry, TMI?). Anyway, about two months ago I decided I didn't need the probiotic anymore so I stopped it. I was okay for about 3 weeks and then all of a sudden, the intense cramping was back again. Needless to say, I'm back on the probiotic. Not a thyroid issue, but it showed me that your gut has a direct influence on your physical wellbeing. So, thank you...I will do more research on diet and probiotics and thyroid issues.

DixieBelle 01-10-2014 08:12 PM

First, we are are friends here so never worry about TMI w/ me! :hugs:

I completely understand what you mean and, yes I agree about the connection. Maybe you could benefit from getting thyroid antibodies tested, too? You never know what you may find. Also get a food intolerance test. I got one it is similar to the allergy test we got as kids - little needles in back and see if there is reaction. I dread it, but I know that until I give the one I took a fair try and remove from diet while gut heals, it may take forever to get it right! Google food intolerances. You can do one on own w/out getting dr testing. Remove one at a time for about 7 days - gluten, dairy, caffeine, etc and then reintroduce one at a time for about 3 to 4 days and see how you respond.

Keep me posted!! We can all benefit from each other! :up:

watcher513 01-10-2014 11:51 PM

Ronnie51, if it were me, I'd get rid of gluten things. That cramping sounds like a reaction to gluten to me. That woud be the very first thing to eliminate.

DixieBelle, about that 30 lbs. you looked like you lost when you didn't eat. Interesting because if you normally eat bread at time, there's gluten in it. It's very inflammatory. It may be a sign you're gluten sensitive since you dropped that weight in 4 days - didn't eat wheat = less inflammation.

Interesting lab results:

TSH: 0.07 Range: 0.4 - 4.50
FT4: 1.8 Range: 0.8- 1.8
FT3: 4.5 Range: 2.3 - 4.2
Thyroid Antibodies: 892 Range: <35


That number 20 thing you were remembering was RT3 (Reverse T3). You need to have that tested at the same time as FT4 and FT3. I'm not a doctor (just a hypo/hashi's person) but I'm surprised they put you back on that high a dose of T4. You're right at the top of the range for FT4 and your FT3 in Over the range. Many people I know feel best with their FT4 around mid-range and FT3 around 2/3-3/4 up the range, not over it.

All our numbers fluctuate all the time. When I first found out I had Hashi's in 1998 I was in the 300's. 5 years ago I was in the mid-400's.

Leo41 01-11-2014 12:55 AM

I'm actually shocked that your doctor increased your dosage with those labs. All your levels are HIGH, and your TSH is very very low.

I'm no physician, but my endo would freak out if I had numbers like that, which seem to be bordering on hyper rather than hypo.

I have Hashi's, too, and I've learned that many Hashi's people will go from hyper to hypo at times. It has never happened to me, but doctors always ask me about it because it seems to be fairly common. Perhaps that's what's going on with you.

In any case, I don't understand increasing meds when the hormone levels are already so high.

DixieBelle 01-11-2014 12:33 PM

She didnt increase anything except the cytomel and we stopped the compounding.

Now it is: tirosint 200mcg with cytomel 5mg in morning. Around 6 to 7 hrs later I take another cytomel 5 mg this is what I started taking when I saw her first back last June. I started to have energy And desire to be more active. Then I complained of severe sweating so we changed to this:
Compounded tirosint 200 mcg and 5mg of cytomel. This started in early September and I started going down hill. Weight gain, depression, horrible fatigue and major forgetfulness. Which brings us to "now it is".......

Y'all think she should have maybe decreased tirosint to 100 and cytomel to 10mg? Maybe that would even out the T4 to the lower to mid area of the range???

Leo41 01-11-2014 12:36 PM

Your T3 is OVER the lab range, so adding more Cytomel (T3) makes no sense to me at all. Is that lab number correct or a typo?

DixieBelle 01-11-2014 12:36 PM

Another thing about the gluten. Can inflammation really cause someone, like me in the experience I had, to go from a 14 to a 10 in pants and look so different from decrease in bloating?? I'm not doubting, I'm just asking bc it just seems so bizarre even though I have seen it for myself.

DixieBelle 01-11-2014 12:37 PM

It is correct. I checked.

MSN08 01-11-2014 01:15 PM

Quote:

Originally Posted by DixieBelle (Post 16752684)
Another thing about the gluten. Can inflammation really cause someone, like me in the experience I had, to go from a 14 to a 10 in pants and look so different from decrease in bloating?? I'm not doubting, I'm just asking bc it just seems so bizarre even though I have seen it for myself.

Just popping it to say during my first 4 days gluten free I dropped 20 lbs of bloat and water retention weight, so I would say it isn't bizarre. I have untreated hashimotos because I cannot find a Doctor to treat it until my thyroid dies basically so I stay gluten free to control it as best as I can. I learned from a naturopathic type Dr. that food is a huge problem behind thyroid malfunctions and that was the only rx I was given was diet advice and so far its working.

GME 01-11-2014 01:50 PM

You need to have your reverse t3 tested. If it is high, it is essentially "robbing" you of your free t3. Which could be one explanation for feeling so tired even though your ft3 was above range. You need it tested though to know for sure.

DixieBelle 01-11-2014 03:58 PM

Quote:

Originally Posted by MSN08 (Post 16752719)
Just popping it to say during my first 4 days gluten free I dropped 20 lbs of bloat and water retention weight, so I would say it isn't bizarre. I have untreated hashimotos because I cannot find a Doctor to treat it until my thyroid dies basically so I stay gluten free to control it as best as I can. I learned from a naturopathic type Dr. that food is a huge problem behind thyroid malfunctions and that was the only rx I was given was diet advice and so far its working.


OMG!! You are kidding?!?! That is amazing isn't it?!? Thanks for sharing. I feel better knowing mine wasn't a fluke lol. Knowing there are other stories makes it easier for me to start. I tell ya though, I have some horrible withdrawals. They are brutal and I haven't made it past day two when I try. Guess it just shows how "allergic" I am to this stuff and how bad it is or me. Thanks for post!

DixieBelle 01-11-2014 03:59 PM

Gina, I will get that done! Thanks for posting! I didn't take second cytomel today wanted to see how I feel emotionally. And today has been a good day.

watcher513 01-11-2014 11:25 PM

DixieBellle, check out the Wheat Belly site and read some of the postings. Or if you have facebook, read them there. They're having amazing results. I'm sure there are some threads here too.

babajer 01-19-2014 03:17 PM

Quote:

Originally Posted by MSN08 (Post 16752719)
Just popping it to say during my first 4 days gluten free I dropped 20 lbs of bloat and water retention weight, so I would say it isn't bizarre. I have untreated hashimotos because I cannot find a Doctor to treat it until my thyroid dies basically so I stay gluten free to control it as best as I can. I learned from a naturopathic type Dr. that food is a huge problem behind thyroid malfunctions and that was the only rx I was given was diet advice and so far its working.

This is amazing. MSN08 would you be willing to post a sample menu?
I am new at this, although a lifer to LCF's. I have begged my dr for over 5 yrs. for thyroid tests because my weight does not move and I do every diet to the "t". I have "normal" TSH (1.62) but asked for more tests because of the fatigue. Finally the antibody test came back 63.6 when the lab range was 0.00 - 9.0. Dr office phoned to say see an endocrinologist. Did that on Friday. Diagnosis is Hashi's but will be untreated because the TSH is perfect. Endo says symptoms seem adrenal and cortisol production is probably causing the lack of weight loss. She ordered blood work...cbc, iron,and celiac. Also said I should do a sleep study. Should I seek a second opinion or do I have to live with these symptoms? Of course, I will cut out gluten immediately and note the changes, if any.

DixieBelle 01-19-2014 04:21 PM

So sorry you are having these experiences. And no you do not have to live with it!! Some advice on here I think would be helpful for you: contact pharmacies in the area and find out who prescribes Armour, Cytomel, etc and keep expanding your search( by miles) until you find someone who treats more aggressively!! Please keep us posted!! You won't regret it. :hugs:

MSN08 01-19-2014 06:29 PM

Quote:

Originally Posted by babajer (Post 16764267)
This is amazing. MSN08 would you be willing to post a sample menu?
I am new at this, although a lifer to LCF's. I have begged my dr for over 5 yrs. for thyroid tests because my weight does not move and I do every diet to the "t". I have "normal" TSH (1.62) but asked for more tests because of the fatigue. Finally the antibody test came back 63.6 when the lab range was 0.00 - 9.0. Dr office phoned to say see an endocrinologist. Did that on Friday. Diagnosis is Hashi's but will be untreated because the TSH is perfect. Endo says symptoms seem adrenal and cortisol production is probably causing the lack of weight loss. She ordered blood work...cbc, iron,and celiac. Also said I should do a sleep study. Should I seek a second opinion or do I have to live with these symptoms? Of course, I will cut out gluten immediately and note the changes, if any.

I have had every possible test done and even when labs came back abnormal the Doctors still did not know what to do or how to help me so whether or not you seek second opinions in up to you but I gave up finding help and took my health into my own hands. This year I have been taking Apple Cider Vinegar,Diatomaceous Earth,Coconut oil and liquid magnesium and have never felt better.The Natural Doctor gave me this list of foods that can cause autoimmune thyroid attacks.I did a food log and figured out which of these foods on this list I react to and I just avoid these things.


Foods to avoid
Fruits-Bananas,canned fruits,dried fruits,mango,pineapple,raisins,watermelon and cantelope.
Grains-amaranth,barley,buckwheat,bulgur,corn,couscous,kam ut,millet,oats,quinoa,rice,rye,spelt,wheat,wheat germ.
Nuts and Seeds- almonds,peanuts,sunflower seeds,sesame seeds.
Gluten containing compounds- hydrolyzed plant or vegetable protein,malt vinegar and flavoring,modified food starch,msg,seitan,stabilizers,spices and textured vegetable protein.
Dairy products-butter,cheese,milk from any animals, (he recommends replacing with almond or cocount milk),mayo,whey,yogurt and margarine.
Soy-edamame,miso,soy milk,soy protein,soy sauce,tempeh,tofu.
Fungi-edible fungi and mushrooms
All alcohol
beans and legumes
nightshade foods-paprika,eggplant,peppers,potatoes,tabasco sauce,salsa,tomatoes in all forms.
all canned foods and any processed foods.
No vegetable oils or fast foods except wendys and chic fila they have a great gluten safe option
flu shots

The key is figuring out which foods your reacting to and removing them to heal your gut which will heal your immune system.

babajer 01-20-2014 05:08 AM

Shoutin Out a BIGGGGGGGGGGGGGG Thank You to MSN08 !

I have a tall order ahead of me but I want to feel better and get rid of 15 more
pounds. I will print your list and start the elimination. I hope your success continues and the culprits you found affecting you were only a few on the list.
Again, thanks so much.


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