Frustrated...how long til I feel Better

[burn1205]

I'm going to cut this to a short version.  In January I went to my family doctor because I stayed so cold.  My body temp was 95.9 in the late evening/early morn and 96.5 during the daytime/early evening.  I could not get warm. My bp was 95/55 and my heart rate around 55-60 bpm.  I have severe facial and leg swelling.  My hair is so dry and broken off.  My fingernails broke off.  The joint paint is horrible.  I have always exercised and ate right.  My hair started breaking and in November I had an endometrial ablations because my periods were crazy.  I am 36 years old and my mother, grandmother has thyroid issues.  My doctor thought it was my thyroid.  Did the routine TSH.  It read out at .9.  I was really surprised.  She also did my Perioxidase Antibodies which were mildly elevated.  135.  So basically, probably my thyroid.  We would watch it but nothing stuck out other than the Hashimotos.

I work in X-ray.  I had a friend ultrasound my thyroid off the record.  She said I had mulitnodular goiter.  She suggested that I have my Dr. write me a real order for an "on the record" report.  I did.  Heterogenous Mulitnodular Goiter.  2 specific at 1.5 cm and 1.9 cm.  One low echoic.  My doctor told me that is not usually anything to worry with and suggested a follow up ultrasound in 3 months.

During this time, it was like I went hyper.  I could not sleep for days.  HR over 130.  BP went to 130/80.  That last for almost 2 weeks and I lost 6 lbs in those two weeks.  Went back to my doctor who told me that there was nothing I could do but sit and wait it out.

I went to an endo.  He told me he could help me.  Pulled lots of endocrine Labs.  My antibodies went to 480 in less than a month, but he did not pull a  TSH  or T4, T3.  He said I had thryoid disease.  Did not treat said we would just watch it.  He also said that I made high levels of Testosterone.  Put me on Spiralactone.  I cried every day for a month and was mean.  I quit taking it.  I also decided on the second visit of seeing this doctor that he didnt even remember what he was testing for.  I will not be back to see him.

Food would stick in my throat and I could feel it work its way down.  Went back to my doctor and I could tell she kind blew me off like I was crazy.  Said I was "too intune with my body". Said we would check my throid panel again.  This has been less than 2 months since my first visit.  

My TSH is 5.39, Free T4 is .7 and my T3 is 90.  Clinically hypo now.  So she had her staff call me to tell me she would call in a prescription.  

She called in Levothyroxine 25 mcg and I take 1/2 a pill every day.  So that equates to 12.5 mcg a day.

During this past month, I have cried every day, btw,  I am not a crier.  I also have gained 18 lbs since the summer regardless of the fact that I jog marathons (usually 5k) in less than 28 minutes and I ride my recumbant bike 10-20 miles per day x 3-5 days per week.  I have been jogger for multiple years jogging up to 6-10 miles at a time.  I eat healthy and take good care of myself.  I do not have a repore with my doctor because I am NEVER sick til now.  I would only go if I had strep or bronchitis.

So, how long til I start feeling better.   I dont have time or the energy to deal with this.  I am so wore out that I struggle to stay awake driving home.  I have never done this before.  I was always the person who never stopped.  I cant stand freezing to death and I feel like I am in a stupor.  

I am currently looking for a new Endocrinologist but dont want to seem as though I am Dr. jumping.  I just feel so bad and I want to be better.   I mean no disrespect to my family doctor but endocrinology is a little more complicated than a sore throat or an ear ache.  

Any thoughts or suggestions.  

[sharon_lee]

sorry, forgot to add to watch list...

[sharon_lee]

Hi....Congratulations of your feeling better.
I'm real new at this too...they started me on 100mcg and it was too much, so am down to 44...I started this back in Dec..and still have a rare good day...though something feels different....I have not been told which disease I have...thought my fine needle biopsy ruled out Hash's. So I guess the leaves Graves...I have a goiter, and a nodule...switched Dr.'s and he said, he would never have put me on 100mcg right off the bat, as my counts were all normal...for me the 100mcg, threw me into the most awful stuff, exhaustion, sores in an on the mouth, severe dry mouth, constipation...No desire to do anything, everything forced, even eating...in time the appetite came back, but it comes and goes...my new Dr. is doing a hoard of tests, I go back next week, just had 7 vials drawn on Mon. and 4 a mo. ago...he said, he is leaning toward my having an auto immune disease...I guess I was blessed in that they did the ultra sound, and thyroid uptake scan, and biopsy before putting me on meds...I did not show cancer, or hash's...however my new Dr. said, he does not trust fine needle biopsies, so he has plans for a different test...from the sound of what you are saying I may have to go off of my meds before he does any more thyroid tests...I was also diagnosed with atrial fibrillation...I don't remember what site I found this on, but I kept it, and will send it to you, hopefully it will help ans. some of your questions about going off of the med, for your tests.....below is the article I mentioned....
take care, and like they keep telling me, hang in there it will get better...so I try to hold onto that...Good luck to you!


Do I need to stop taking my thyroid pills for these tests?
Since Euthyrox or Synthroid (and most other thyroid pills) behave exactly as normal human thyroid hormone, they are not rapidly cleared from the body as other medications are. Most thyroid pills have a half life of 6.7 days which means they must be stopped for four to five weeks (five half lives) before accurate thyroid testing is possible. An exception to the long half life of thyroid medication is Cytomel - a thyroid pill with a half life of only forty-eight hours. Therefore it is possible to change a person's thyroid replacement to Cytomel for one month to allow time for his regular pills to clear the body. Cytomel is then stopped for ten days (five half lives) and the appropriate test can then be done. Usually patients, even those who have no remaining thyroid function, tolerate being off thyroid replacement only ten days quite well.

The thyroid gland is under the control of the pituitary gland, a small gland the size of a peanut at the base of the brain (shown here in orange). When the level of thyroid hormones (T3 & T4) drops too low, the pituitary gland produces Thyroid Stimulating Hormone (TSH) which stimulates the thyroid gland to produce more hormones. Under the influence of TSH, the thyroid will manufacture and secrete T3 and T4 thereby raising their blood levels. The pituitary senses this and responds by decreasing its TSH production. One can imagine the thyroid gland as a furnace and the pituitary gland as the thermostat. Thyroid hormones are like heat. When the heat gets back to the thermostat, it turns the thermostat off. As the room cools (the thyroid hormone levels drop), the thermostat turns back on (TSH increases) and the furnace produces more heat (thyroid hormones).

[burn1205]

I went to my new Endocrinologist a week ago.  He told me I was grossly undermedicated.  He put me 100 mcg of Levothyroxine.  First few days I still felt like crap. Then about the 4th day, I didnt need a nap.  Was not what I used to be, but actually felt alive.  On the 5th day, I actually felt like a whole lot of the brain fog was lifted.  I am going to say that I dont feel as good as I did before but I feel a huge improvement over what I was.  I go back in 4 weeks to be tested again to see if I need to be adjusted up or down.  I will say Dr. Williams, Louisville KY, seemed very knowledgeable and was more than willing to answer any of my questions and educated me.  He also told me that I need to speak with my children's doctor to have them tested for Hashimoto's, especially my daughter, since it was hereditary.  He was not only concerned with me, but my children as well.

I had my follow-up ultrasound yesterday and they (the Radiologist) are now recommending a thyroid uptake scan.  I just started feeling like I am living again. I just dont think I can go off my levothyroxine for a month.  I DONT WANT to.  I felt like death before and I dont ever want to feel like that again.  

I am going to see what my new Endocrine Dr. suggests.  I have typical Hashimoto's and I have no normal thryoid tissue.  

Anyone here ever have Hashi's and Cancer?  Just seeing if it happens because I have absolutley no histories of Cancer in either side of my family.

Anyway, it is just nice to get up this morning and feel like I dont have concrete blocks attached to my legs and I can actually remember something.

Hope everyyone has a great day!

[sharon_lee]

I don't have any good suggestions, as I am pretty new here, too...I had apparently the opposite problem as you...my Dr. started me on 100MCG Levo. I've been all over the scale with symptoms, and am blessed when I have a day that I actually feel like going out of the house, I've had 2 of those since Dec. today being the second.....Anyway, my TSH is now 0.011 my labs low normal is 0.450, I just am having a dickens of a time...I have found a new physician he has a degree as a D.O. I took my labs to my Psychiatrist...and he said, why is it that Psychiatrists and the Dr. you are going to know what test to perform for the thyroid..and, Internist's don't! I do have atrial fibrilation, and as my new Dr. said, I have a lot of issues, and he does not believe in treating symptoms...I pray that soon you get the right help...Take care of yourself...and I will say in all honesty, I've had days, that I just want it all to end...so tired of being sick and tired...I grow weary..
Blessings, and do keep posting your feelings and problems...I've found that people on here are caring and want to help, in anyway they can to give us advice, and share their experiences...which are most helpful to me,,,,at least I know that I am not alone....

[burn1205]

thank you

[compnet]

Here's another website.  It's great, it has peoples reviews of docs, and you can search under endocrinologists.

http://www.ratemds.com

[compnet]

Here's a website where you can find a thyroid specialist:

http://thyroid.org/patients/specialists.php

[burn1205]

Thanks for your well wishes and concern.  Unfortunately, the internet only allows words to be black and white and does not show intent.  

Once again, thanks.  I appreciated all the support and opinions.

[gimel]

Whoa!  You are misreading my attempt to keep you from waiting 6 weeks and  possibly being disappointed with your appointment.  I'd prefer that you get help as soon as possible, so you don't have to "suck up this nasty thyroid issue" any longer than is absolutely necessary.  If you call and ask those questions now, you might determine that this new Endo is not what you need, and you can continue looking for a good thyroid doctor immediately instead in 6-7 weeks.      

[burn1205]

Who said I assumed anything?  

I said that I have a new appt with a new doctor and until I get to see her that I got to suck up this nasty thyroid issue.  

[gimel]

Why assume that just because the doc is an Endo that all will be well?  Why not find out ahead of time by calling and asking these questions, rather than waiting 6 weeks and finding out that you need to keep looking for a good thyroid doctor?

[burn1205]

My appt with my new endocrine dr is 6 weeks out.  Till then I just gotta suck it up and keep moving.  =)  

I am so frustrated.  That's all I can say.  

[gimel]

Some of the ways to find a good thyroid doctor include posting a new message asking members for a recommendation for one in your area.  This might be the best, but chances are slim of matching up.  Another way is to ask around among the people you work with.  Another would be to ask your local pharmacist about what doctors prescribe dessicated thyroid meds.  These doctors seem to be more likely to be the type you need.  Another possibility is to use this list of top thyroid doctors and go through the ones in your area and read patient reviews and see if any are interesting.  You can also go to the Armour thyroid site and look up doctors in your area that prescribe Armour.

http://www.thyroid-info.com/topdrs/

After you select some possibilities, then I would call the office and relate that you are looking for a good thyroid doctor and ask if you could ask a couple of questions of one of the nurses.  I would ask if the doctor believes in testing the active thyroid hormones, free T3 and free T4,  as well as TSH.  I would also ask if the doctor is willing to treat a patient for symptoms by testing and adjusting free T3 and free T4 levels.  And finally I would ask if the doctor is willing to prescribe T3 meds as well as T4 meds.  If the answer to either of these questions is no, then keep looking.

[burn1205]

Thank You all so much for you comments.

I really felt like I was underdosed for the medicine.  

My ultrasound was 2-3 months ago.  

And I wear I thyroid shield EVERY TIME I fluro.

I have had my symptoms for years.  Especially after I had my son 13 years ago, but they never have been this sever and I always seems to get better.  But like I said, I never go to the DR because just to be honest, I have very little faith.  I work with them daily and "most" but not "all" really just go by a piece of paper and are not caring.  I work x-ray now but I worked in the ER for 6 years.

Excuse my ignorance, how would I go about looking for a thyroid doctor and not just an endocrine dr.?  

Extra history for this is my grandmother had thyroid issues.  She has alzheimer's and unfortunately can not give me her history.  My mother had serious issues but for a very long time was dx with depression.  She went hyper and had to have her one gland of her parathryoid and her thymus removed.  She doesnt know why.  It was not customary to question Drs then.  They "knew"  what they were doing and people just did what they say.

My sister had the exact same probs as I do as far as the swelling and joing paint.   She was told she has PCOS.  She took ALDACTONE (same as spiralactone, just name brand) and she also became mean but it really stops the swelling and joint pain.  She had high bp, high hr, and elevated cholesterol.  I was hypo on all except for the month I was hyper.  

IDK. I am so over this stuff.  I just want to get better.  I have so much to do.  I am not happy with the weight gain but I can live with it.  I surely do not want to gain more though.  I figured that I would just keep exercising and eating right.  I may gain weight but maybe I could still keep my heart healthy.  I have already gone crazy I think.

So, anybody wanna suggest how to find that good Thyroid dr and not endo please tell me.  I am new with dealing with these drs for my own health.

Once again, it was very nice know that somebody understands.  I have felt very alone with all this.  

[898_1]

1) 12.5 is almost nothing; most doses for hypo patients are between 75 and 125.
2) How long ago did you have usltrasound? "2 specific at 1.5 cm and 1.9 cm.  One low echoic" may need more investigation (for  nodules larger then 1 cm with blood flow inside  biopsy is recommended).
3) when you are working in X-ray are you wearing thyroid shield? (Low doses  of radiation,according to some sources can trigger autoimmune condition).

[Smilerdeb]

I totally agree with Gimel...but you wouldnt be the FIRST or the LAST person to go Doctor Shopping.
I have done it myself and even fired my Endo as she was totally useless.
You will start to feel better once your levels start to stabilise.
Hang in there...there is light at the end of the tunnel.

[Wtps]

I feel for you hang in there I was in your boat just recently and feel a lot better and I've only been on Levoxyl for 4-5 months(hypo/Hashi's) I noticed a big improvement the first 2 months though but I still have my days but I know things will only get better.

I found a great endo and he put me on 75mcg of levoxyl and I haven't had to switch doses etc. However my TSH went from 6 to 15 in mere weeks and my antibodies were around 480+. I want to add that I initially was diagnosed by my primary Dr. and switched to an endo after my primary prescribed me levothyroxine in 25mcg dose. I felt that was off since my mother had hypo so I was somewhat familiar and then saw the endo instead. Also the people on these boards are a gift and gave me great info. which really helped me make informed decisions and ask the right questions to my Dr.

I've read some bad things about generics. For some people they work and for others they don't. I have also read that some generics are sometimes produced by different manufacturers(if you look at the lower label of your prescription you can see who the manufacturer is and compare it month to month) and this can sometimes affect the potency. Maybe look into a brand name if possible?

I can relate to the crying and weight gain. I'm not a crier either and it was a bit scary at times looking back but now things are slowly getting better. The weight I gained is slowly slowly coming off with exercise/levoxyl.

I can relate to your hair being dry and breaking off too. I'm still dealing with that as of now. Thyroid meds can also cause temporary hair loss that should diminish as your body gets used to the meds.

Do you know if you have an iron deficiency/or any other vitamin deficiency? We also found that I had an iron deficiency. It might be worth looking into.


I agree with gimel about finding a good thyroid doctor. This is a trial and error for some but don't give up there are great endos and Dr.'s that treat thyroid out there.

[gimel]

It's good that you are finally on thyroid meds.  Your starting dose seems ultraconservative.Why not 25 mcg every day?  How long before you are scheduled for retest?  In your situation, I would press the doctor to retest in 4-5 weeks at most, so that you can see about increasing the dosage enough to relieve symptoms.  

When you do go back for testing, insist that they test for free T3 (not total T3) as well as free T4 and TSH.  Free T3 is four times as active as FT4, plus FT3 correlates best with hypo symptoms.  TSH is the doctors' gold standard, but it doesn't correlate well at all with hypo symptoms.  In my opinion the best way to treat a thyroid patient is to test and adjust the levels of the actual, biologically active thyroid hormones, FT3 and FT4, with whatever type of medication is necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief is all important.  Many times we hear from members here that this requires that FT3 is adjusted into the upper part of its range and FT4 is adjusted to at least midpoint of its range.

Since your thyroid glands are in the process of being attacked and destroyed by antibodies from your immune system, you will need increasing levels of medication.  Just how quickly you can ramp up depends on your doctor's treatment protocol and your body's tolerance for the meds.  I know you will want to ramp up fast, but sometimes you can get a reaction and have to back way off and start ramping up again very slowly.  

As part of this process, you really need to find a good thyroid doctor.  That doesn't mean that it has to be an endocrinologist.  Many of them specialize in diabetes, rather than thyroid.  What you really need to find is a doctor that will treat your symptoms as I outlined above.

I'm sure that you will hear from other members since a lot of us have experienced Hashi's.