Tyring to figure this mess out...

chelekaz

So in April I had asked my doc to run some labs because I wasn't feeling right for a few months.

Received an urgent call from doc next morning that I had an appointment with Endo the next afternoon. My TSH levels were 225. He did run the T4/T3 and other thyroid tests as well.

Endo the next day gave me a whopping 15 minutes. Want to change but next nearest Endo in my health network is almost 2 hours away and has an 8 month waiting period to get in. Anyways...

He said that antibodies in the blood work confirmed Hashimoto's and that my different Thyroid levels show that my Thryoid isnt functioning. I was on 50mcg/wk, 75mcg/wk then 2wks at 100 mcg. Labs last month showed TSH to 165 so increased to 150mcg. Yesterdays labs show I am finally down to 16.6 and he increased to 175mcg. I am taking Levexothryne (sp).

All during this time, it seems my symptoms are worsening. I have more tired days than not, I've been suffering with pain off and on in my finger, hands, wrist, shoulders and feet for months and that has also gotten worse on my off days. I'm edgy w/o reason, my hair... lets not even go there... it was falling out before diagnosis and is falling out even more now. I'm so frustrated.

At initial appt I tried to tell doc about pain, he said take Aleve and went back to his computer - which he spent more time on than talking with me. He never asked me how I felt or about any symptoms.

Today I told the nurse and she asked me to hang on. Came back and said Dr told her that this is normal. That my body is adjusting to meds and that the disease and the meds both have some of the same symptoms and that once I get down to normal range that these should lessen or disappear. The worse is that I cannot concentrate on anything.

I have a full time job, house, kids (sports and music lessons), my husband has his own illness that when flares up knocks him down for sometimes 2-3 months. I am NOT the one who is allowed to be sick. I guess it's good that I work out of a home office instead of commuting to the office because at least I can take naps but like this week.. I have not really "worked" at all. Bare minimum to get by only.....

My husband is being super supportive. Telling me to just do what I can and he can pick up the rest. But it is hard to do that yet some days I can't do more.

Does anyone else have this experience? Any of these symptoms?

I sort of feel like I am losing my mind here.

Soozie1978

Is there a chance of seeing a doctor of osteopathy? I was diagnosed with Hashimoto's at about 45 years old. Initially I was given levothyroxine, too. I would see symptoms improving for a week or two, then plummet back into the abyss. My doctor would check levels and increase my dose, similar to what you are going through. This was a family MD. Due to costs and insurance, I changed doctors. The new doctor put me on Armour Thyroid which is made from animal thyroids. I will admit that I was miserable for about 2 weeks and almost asked for the other stuff back, but then I started to feel better. I had more energy, my hair stopped falling out in handfulls, the brain fog began to lift, and the pain lessened. I still had to go back and do blood work and change levels, but I didn't have the falls inbetween, more like a plateau. I have been on Armour for more than 10 years now. I get my levels checked every 6 months to a year, but have had only minor changes in the last few years. I now see a doctor of osteopathy who treats all my body malfunctions as a whole balanced person using both prescription medicines and natural supplements. I also have diabetes, allergies, and am in menopause, as well as high cholesterol. All of these things can work together to mess me up, so having them balanced really helps me to function. There are many sites online that explain the benefits of using Armour over Synthetic thyroid, but many endocrinologists prefer the synthetic. I have used both and would not go back to synthetic for anything. When it was difficult to obtain due to some FDA studies a couple of years ago, I had my natural thyroid compounded and paid at least 10 times more for it. It makes that much difference to me. My advice - keep looking for a doctor that will listen to your symptoms as well as look at your numbers. Your normal is not the same as anyone else's normal. The doctor does not need to be an endochrinologist, just caring and willing to work with you. I have yet to see an endo.

chelekaz

I have to find a new Dr. I called my primary doc for the lab results from my appt in April. That was when I asked him to run a panel of tests. Here are the results:

T-PRO 9.3 high
FT4 .33 low
TSH 225 high
PLT (Platelets) 558 high
SED Rate 51 high

I went through everything... there is NO test that was run for antibodies... so how in the hell did the Endocrinologist say I have Hashimotos without running any antibody tests?

I complain of pain and told to take Aleve "its nothing". Yet SED R and TPRO prove I had inflammations. Platelets, I don't like them that high but also can be caused by inflammation (my husband has a blood disorder so very familiar w/ those).

Yet... he blew off my pain, hell he blew me off ... and since then the ONLY lab test that he has run in the TSH (May and now June). Does this seem right?? I will check into a doctor of osteopathy. I did call back doc and ask about changing meds and was told we can discuss it in Aug at my appt and assured again this is 'all normal'.

IT IS NOT NORMAL. I feel horrible, I feel sad (dont like the word depressed but yeah), this sucks.

ETA: Well, great... now I forget what I wanted to add.. geesh... but I will say this I guess... Wouldn't you think that since my TSH is finally getting down close to normal that I would feel better instead of feeling increasingly worse? Isn't that backwards? I honestly felt better before the meds.

Soozie1978

No, its not normal. Unfortunately some doctors (many) seem to think so. The Thyroid hormone controls everything else your body does, so you will probably be having trouble with digestion, female issues, hearing (ringing in the ears?) gritty dry eyes, muscle aches and spasms, tiredness, weight gain, brittle finger and toe nails, hair loss and breakage, and many other symptoms. I know I spent about 40 years going to different doctors for different symptoms and no one put it together that it was all because of low thyroid. The high TSH means your pituitary gland is sending out more and more hormone to your thyroid gland telling it to produce more, which it obviously can't. The Hashimoto's diagnosis is probably based on that. I am surprised that there were no tests for Free T3. The theory behind Levothyroxine is that it is T4 which your body is supposed to convert to other forms of thyroid (T3, T2, T1) All of those are included in the natural, which is why many people do better on that. Maybe they are not converting to the forms of thyroid hormone they need. The first two doctors I saw were General Practitioners, Family doctors. The only reason I suggest an Osteopothist is that one might be more willing to look at different types of treatments and a balance between other things that are affecting you. The depression can be part of the condition. I don't know what to tell you other than to keep looking until you find a doctor that will really listen to you and what you are experiencing. Don't let them tell you that it is normal to feel like crap and have no energy. Research Hashimoto's online and find out more about it. Knowledge will help you to learn how to deal with all of the things your body is experiencing. Expect it to be a long journey. You may have to be treated and retested many times before you find a level that you feel good at. It may change as you go through different phases of your life. It is definitely worth the time to get yourself balanced out. There was a point in my life where I barely functioned, getting my children off to school, sleeping all day, picking them up, fixing dinner, and going back to bed. I don't even want to talk about weight gain and hair loss. Now I teach second grade, attend all my children's functions, shop, cook, run errands, spend time with my husband. Yes, I'm exhausted, but there is a legitimate reason for it now!

tecallahan

Antibodies should be listed under Thyroid Peroxiase and/or Tpo. I have never heard of TSH as high as 225 -- my highest ever was 43 and I could barely walk.

But all TSH means is that you don't have enough T4 (inactive hormone). Without T4, your body cannot make T3 (active hormone).
Having hashimoto may also mean that when you do have T4 that your body doesn't convert it to T3.

There is nothing normal about your ranges -- if there's anything you can do to get to a pharmacy, and ask them for the names of doctors that prescribe Armour or any Natural Dessicated Thyroid, try to do that.

Check out the website: www.stopthethyroidmadness.com -- you are not crazy! T4 only doesn't work. TSH labs are pretty much useless.

When you look at your labs, your Free T3 should be at the high end of the normal range. Your Free T4 should be at the low end of the normal range. If this is reversed, then you may not be converting T4 to T3. Natural Dessicated Thyroid contains both T3 and T4 - so it helps those of us that are not converting T4 to T3.

Agree with Soozie - it takes a few weeks to adjust to Armour, but then you feel so much better. When you have hashi, your levels can jump around a lot until everything settles down -- that is unfortunate but normal.

Terri

chelekaz

Yeah, I checked my lab report and the antibodies test was not done. I am not fighting the diagnosis because I certainly have the symptoms and it makes sense, I just do not like being diagnosed with something when there was no test done to confirm it.

The TSH level is not a typo - I wish. My family doc was ready to admit me to the hospital and was quite freaked out saying that I was at risk for cardiac arrest and slipping into a coma. No one in his office knew how I was walking in nor how I even exercised each day.

I have a call into my Endo to ask him to rerun labs (ALL labs including Free T3 which was never run).

I think it is so sad that as someone going through this, I have to do the research and talk to people like all of you who have gone through this to learn what labs should be run and different meds that are out there. Seriously?! The "specialist" who went to school for this cannot figure this out? Though maybe if he spent more than 15 mintues with me and said more than "read this" and "Your elbows can grate cheese" (thanks @ss, I appreciated that one) you might be able to help me.

~Chele

chelekaz

Well.... Dr has been put on notice. He stated that TSH tests are proven to be correct and he will check Free T4 but not T3. I asked about the labs that showed inflammation in April; I was told that I could work that out w/ my primary.

When I asked why he wouldn't run the labs to help w/ symptoms caused by a disease that HE is a specialist of he had no answer.

So, I am just going to call my primary and get labs repeated that HE ran in April and ask him to include the T3 test in with it.

And I was told that re: symptoms and how he feel that I need to stop worrying and let the meds work. I would, IF I didnt start feeling crappy after taking the meds. Sigh... I guess I will be changing to another specialist and closest now is over an hour away.

lmelangley

My heart goes out to you. This shouldn't be so hard, but for so many, it is. My only advice is start taking a vitamin D supplement, and ask for that level to be taken, as well. Lots of folks with thyroid issues are lacking in D. Might not help, but certainly won't hurt.

debbiepa

I'm sorry that you are going through all of this; it definately isn't easy to deal with. I also have Hashimoto's and it has taken awhile to get diagnosed and treated. My symptoms started last fall and I've finally have been feeling better the past week or so, thanks to a great endocrinologist. I felt very frustrated with all of the symptoms. It has gotten better for me and I'm sure that it will for you as well. Hang in there; keep following up with your endo or get a 2nd opinion if you feel that yours isn't listening. :flowerforyou:

tecallahan

Well.... Dr has been put on notice. He stated that TSH tests are proven to be correct and he will check Free T4 but not T3. I asked about the labs that showed inflammation in April; I was told that I could work that out w/ my primary.

When I asked why he wouldn't run the labs to help w/ symptoms caused by a disease that HE is a specialist of he had no answer.

So, I am just going to call my primary and get labs repeated that HE ran in April and ask him to include the T3 test in with it.

And I was told that re: symptoms and how he feel that I need to stop worrying and let the meds work. I would, IF I didnt start feeling crappy after taking the meds. Sigh... I guess I will be changing to another specialist and closest now is over an hour away.

All *crap*... T3 is the active thyroid hormone - any doctor that refuses to test for it is a moron. And I don' t know how he can diagnose hashi without an antibody count?? And so classic that he said that the labs will tell him how you are - regardless of how you feel. I would kick him to the curb!

Please checkout the site: www.stopthethyroidmadness.com -- you will see all this crazy stuff that doctors do and say - and recommendations about what to do.

TXBelle1174

For what its worth.... hunting down a Dr. that isnt afraid to prescribe Armour may be worth it. I was on Levothyroxine for several years. My tests would be "normal" but I still felt horrible and had all the hypo symptoms and sometimes they even got worse. I FINALLY got a decent endo and he switched me to Armour. My symptoms are not completely gone (I have been on it about a month) but I feel ten times better. I have more energy and I feel like I may be breaking through the brain fog. I was actually diagnosed with Fibromyalgia and put on a medication for that (Cymbalta) and my endo said once we get my thyroid straightened out, we may find that I dont have and never had Fibromyalgia. Anyway, the Armour is working for me. I still struggle with weight loss and I still have minor symptoms BUT I am starting to feel better. I hope things start going in a better direction for you. I know that this is extremely frustrating and I am still in the learning process as well. Good luck!

tecallahan

Mindy - 100% agree!! It's absolutely worth it - and for those of you that are young - take advantage of your knowledge and get your thyroid squared away before you hit menopause - trust me when I say you don't want to be fighting hypothyroidism when you are post-menopausal!!

If you T3, T4 and TSH levels are all good -- and you don't have high Reverse T3 -- and your Vitamin D levels are good -- and your Ferritin/Iron levels are good -- then look into adrenal fatigue -- if you don't have enough cortisol, the T3 cannot get into your cells - so you will still be unable to lose weight and you will still have some hypo symptoms.

chelekaz

Thanks eveyrone. The Endo only re-ran the TSH and T4 for me. Won't treat the pain that I am in saying that is a separate issue (even though at office visit he said that the pain could be related) and to have my family doc deal with it. So... I have an appt w/ a Rhumatologist in 2 weeks.

Right now I am in one of my 'episodes'. Dizziness started on Saturday, then the pain increasing daily since and of course just exhausted. I am trying to notice patterns because some times I am really good.... then I get hit. It looks like the dizziness is an early indicator when I am going to "flare up".

There is a Hormone Replacement Therapy center about an hour from here. I will need to pay out of pocket as they do not accept insurance. The meds and blood tests are covered under my insurance of course but the visits themselves won't be. My husband and I are figuring out our finances; hopefully I can get in next month.

tecallahan

Thanks eveyrone. The Endo only re-ran the TSH and T4 for me. Won't treat the pain that I am in saying that is a separate issue (even though at office visit he said that the pain could be related) and to have my family doc deal with it. So... I have an appt w/ a Rhumatologist in 2 weeks.

Right now I am in one of my 'episodes'. Dizziness started on Saturday, then the pain increasing daily since and of course just exhausted. I am trying to notice patterns because some times I am really good.... then I get hit. It looks like the dizziness is an early indicator when I am going to "flare up".

There is a Hormone Replacement Therapy center about an hour from here. I will need to pay out of pocket as they do not accept insurance. The meds and blood tests are covered under my insurance of course but the visits themselves won't be. My husband and I are figuring out our finances; hopefully I can get in next month.

I have had chronic vertigo for 35 years -- my ND is convinced it is somehow connected to my thyroid or my adrenals. For me, it is a sign my Thyroid levels are about to go whacky. I hope you find someone who will treat all your symptoms - not just your lab tests!!

swiftfox82

I am so glad i have found a doctor that knows everything about what is wrong with me and takes a lot of time and effort into treating me. I tell her all of my symptoms and she goes over everything in detail with me and gives me the copies of the tests she takes for me. I am so aggravated that some docs are still not caring about the people with hashimotos. I can tell you what she told me to do.
She has me on Nature thyroid, which works just as good as armour does... I have also been on the other thyroid pills that other docs prescribed me when I was first diagnosed with I was 15 and they only made me lose a little weight then they did nothing after 2 months. So in my experience any doc that wont give you armour or nature thyroid are not good docs to go to for thyroid issues. Some say that since nature and armour pills are made from pigs thyroid glands they are bad... but they are way better than synthetic thyroid because in my experience synthetic ones don't work as well.

She has me taking magnesium chelate before I go to bed along with vital-10 ( a great powerful probiotic not cheap though, but works wonders).
She also told me repeatedly that I should avoid gluten AT ALL COSTS!! Anyone with thyroid issues would do well on this advice.

She also put me on the paleo diet since it exemplifies the kind of diet that works really well for people like us with thyroid issues... since it has no sugar, no gluten, no processed foods.

She also told me that I shouldn't eat any cow product since it is harder for people with hypothyroidism to digest. I can however have goat products since they are easier to digest.

After following her advice I must say I feel way better and a lot of my symptoms have been reduced dramatically!( if they even exist!)

She is from china and she believes in good healthy diet for treatment. She would never prescribe anything like zoloft (many other doctors wanted my mom to take it and she has hormone problems way worse than I do). Other doctors only seemed interested in treating the symptoms individually with over the counter drugs. I trust her emphatically because she would never prescribe any over the counter nonsense. She always tries to treat the cause and not the symptom. I love my natural hormone doctor!!!

I hope some of these tips help!