someone please help!

[reg1961]

I have been hypo and on synthroid for almost 20 years and have done pretty well, with adjustments made here and there. In March I had a physical and my thyroid checked by a new doctor.  My tsh was 2.5 and free t4  1.21 (.82-1.77).  She upped my dose from 88mcg., which I had been on for 5 years, to 100.  I had acouple of anxiety attacks over the summer, then everything went haywire after that, anxiety, lossof appetite, trouble sleeping, fast heartrate, and feeling terrible especially the anxiety mostly hyper symptoms.  I've felt so "out of it." These are my test results since March:

March
TSH - 2.5 (.47-5.01)
Free T4- 1.21 (.82-1.77)

August
TSH - .43 (.47-5.01
No frees done

October
TSH- .19 (.47-5.01)
Free T3 - 2.6 (2.0-4.4)
Free T4 - 1.41 (-71-1.85)

December
TSH- 3.8
No frees done

I've still been having anxiety, emotional, some depression, mainly because I feel so bad most of the time,   I've lost over 20lbs., am tired, hardly want to do anything.  Am seeing a new endo today to discuss the latest labs.  Does anyone have any input?  Thank you so much?

[Barb135]

It doesn't require an endocrinologist to be a good thyroid doctor. Some GP's are really good with treating thyroid conditions, because they are willing to treat symptoms, not just labs.  Some of the best known endocrinologists are horrible thyroid doctors, so don't get too caught up in the type of doctor he is.

You shouldn't be having that kind of anxiety.  

TSH neither causes nor alleviates symptoms.  It's all based on the Free T3 and Free T4, which are the actual thyroid hormones.  TSH is simply a pituitary hormone that's trying to stimulate the thyroid into producing more thyroid hormones, but if your thyroid can't, it can't... TSH will simply keep going higher, unless you provide adequate exogenous hormones to keep FT levels adequate.

Dosing by TSH, only, is like shooting a moving target.  

IMO, you need to get FT3 and FT4 levels, so you know exactly what you're dealing with, then you can decide whether the anxiety might be thyroid related or related to the zoloft or real depression.

Don't ever be sorry for asking questions... that's how we learn and figure out how to handle the issues and that's why I volunteer my time here.

[reg1961]

Did get your message and will look into the doctor in my area.  He is a GP but I guess he's known for endocrinology?  will have to find out.  Since my TSH is high at 3.27 and not knowing my free's at this time,  should I still be feeling this anxiety and lack of motivation?  Is my body still trying to recover from these past few months od struggling?  I do have klonopin for anxiety but try not to use it but maybe I just need to take a little od it to keep the anxiety away until my body straightens out.  I'm just so tired of dealing with it and not feeling myself, I' m frustrated.  I must add that my levels got off about 6 years ago. Started feeling anxiety when my levels were 3.4 then they dropped six weeks later to .02 then about 8 months to feel normal again with dosage adjustments.  Nobody ever checked my free's cause I didn't know to ask.  Am I just sensitive to any changes in TSH no matter the free's?  Sorry, just trying to understand it all.  Thanks for your time!

[Barb135]

Be sure to go to the manufacturer's web site and check on the program for the free/reduced price of Tirosint.  They go by your income, not whether you have insurance or not. If you get it through the company, they send it to you through the mail, but do check your pharmacy, as well... all options.  

I've contacted the company a number of times with various questions and they've always gotten back to me, so do get in touch with them.  

Were you able to access the message?

[reg1961]

I have wondered if the zoloft was having adverse effects and thought I would go ahead and start to wean off of it, it's been about 10 weeks on it so hopefully won't have any withdrawal symptoms. Then start the tirosint, but I will call about the price.  It may be too expensive. She started me on 75mcg. same as the synthroid dosage I was on, with skipping one day a week. I wouldn't mind trying it if I can afford it.
Thank you for your input!  I'll look for your message about doctors here in my area.

[Barb135]

I forgot to mention that new blood work (including FT3 and FT4) should always be done prior to a dosage/med change, so you know exactly where you levels are when you start on the new dose/med.

[Barb135]

I know what you mean about the anxiety being physiological.  It could be related to menopause - I was quite emotional when I got to started peri-menopause, but I ended up with a hysterectomy, which finished off the whole process in a hurry.  It could also be the zoloft... you do know that often causes things to worse, don't you?  I understand that people often think the worst when you're on a med like that.  Maybe you don't need anything that strong.  

There came a point where I did need an anti-anxiety med, due to circumstances beyond my control and my doctor put me on Buspirone, which is specifically for anxiety, not depression.  You might ask to go that route.  

Tirosint should not make your TSH rise at all.  It's a T4 med, just like Synthroid and all the others.   It is, typically, not covered by insurance anyway, so not having insurance doesn't matter.  The reason given is that there are generics available, but they're thinking of the pill type levothyroxine.  There is no generic gelcap available, but they wouldn't budge for me.  You should check with your pharmacy on the cost.  Mine was costing well over $100/month when I quit taking it, when all other thyroid meds are available for $10-$25/month and are covered by insurance.

Arimak who manufactures Tirosint has a program through which you can get the med for free or reduced cost if you can't afford to pay for them and you qualify for the program.  That's why mine were so expensive... I didn't qualify for the program, so I was helping to subside those who couldn't afford the med.  I was happy to do it as long as I could justify and afford the cost.  

We're unable to publish doctor's names on the open forum, so I will be sending you information regarding a couple via Private Message.  To retrieve the message, hover your mouse over your name, then click on Message.

[reg1961]

Thank you for responding!  No free t's were ordered but I pre-order through an online lab so I can do that myself I suppose.  I also had bad anxiety when first diagnosed hypo so I definitely know it can be a symptom either way!  I'm just so tired of feeling bad and don't think it's menopause related and there are no "triggers" to the anxiety.  It's physiological, not psychological.  I was fine, felt great, had lots of energy until Aug.  She asked if I had considered seeing a counselor as I was emotional and of course being on the zoloft I feel everyone thinks you have issues.  But that's never been the case unless something was off in my numbers.  Sorry for the rant but I feel very alone and scared as I'm not myself at all.  I just push thru from one day to the next not enjoying anything.  It's so not me!  I'm in Richmond, Virginia.  I guess I'll try the tirosint and see if that helps any.  If it's absorbed quicker, will that cause my tsh to rise quicker?she gave me a two month sample but I don't have insurance now so don't know if I'll be able to afford it.

[Barb135]

Was your endo going off those old Free T's from October?  She didn't order new ones?  If so, she's not worth the skin she lives in.  

While it's true that some people get anxiety when taking T3 med, that's only if they take too much and any endo who knows what they're doing would know that T3 is only dosed in very small increments.  Anxiety is also a very common hypo symptom... I had it very bad when I was at my most hypo.

I'm very familiar with Tirosint.  It came on the market in May 2009 and I started taking in Aug of that year.  I took it until Feb of this year, when I went off it because it got so expensive I couldn't afford to pay for it and my insurance didn't cover it, at all.  It has the same active ingredient (levothyroxine) as all the other T4 medications.  The only other ingredients it has are water, glycerin and gelatin.  Because there are no fillers/binders or dyes to react to, it's hypo-allergenic.  Most people who take it, do well on it, but there have been some who did not, usually, because they don't give it enough time to work.

If your endo ordered new FT3/FT4 tests, please post the results, with reference ranges, so we can see your current levels.  If she didn't, my advice would be to start looking for a different endo.  One of our members maintains a list of patient recommended thyroid doctors, so if you tell us where you're located, we might be able to give you some names.

[reg1961]

Also, my tsh is 3.27 not 3.8, not that there's a whole lot of difference.

[reg1961]

Just got back from the endo.  She's not sure exactly what's going on, maybe a combination of perimenopause (I'm 53 but still have regular cycle), absorption issues with the synthroid since my numbers are everywhere.  Can't remember exactly what she said about the free t tests but she would be afraid to give me something with t3 in it since I already have anxiety and that causes anxiety in some people.  So, she's having me try Tirosint 75mcg. I've always taken synthroid so thiss is definitly something new to me, switching medications.  My GP put me on zoloft several months ago to help out but I don't feel like it's helping me. I don't like taking it and have never taken an antidepressant before.  Don't know whether to get off of it, go up on it or hang on and see if the thyroid straightens itself out.  Any thoughts.  Do you know anything about tirosint?

[Barb135]

You're welcome to post your latest thyroid test results and we will give whatever insight we can.  Symptoms such as paresthesia (numbness, tingling) and tinnitus can be related to hypothyroidism.  

Numbness, tingling or a feeling of burning in your feet, legs, hands can also be neuropathy caused by long standing Vitamin B-12 deficiency.  B-12 deficiency can be caused by Pernicious Anemia which is an inability to absorb B-12 through the stomach or due to diet, etc.  The older we get, the more likely we are to have B-12 deficiency because our stomach is less able to absorb nutrients.

[Dalubaba]

By over sight I did not read your post which is full of significant observation. All the years, many a time i have just seen that results are in normal range and did not bother to compare further.  
I am on the same dose of 100 mcg. I will post my latest  results and few symptoms I am having. Whether symptoms are due to hypo or age.. I will revert back to you with my thyroid report.

[Dalubaba]

I am taking Sunthroid since last mote than 30 years. I take 100 mcg. I do get tested for t4, t3, and tsh. They are always in normal range. I am 84.  I do not have any major symptoms of hypo.I have issues like parasthesia, allergy,tinitus, Amd, Most of them are unrelated to hypo or not known to be related to hypo.This is heriditory in our family. Almost all members are having hypo.
All have quite a long long life.All are/were octogenarians.I did not search in hypothyroism as I did not get any serious symptoms so far.
I did find one advice intrguing.. consult endo who is routinely dealing with hypothyroidism .It seems there is much more than what is know on hypo.
Few of my symptoms may be because of hypo indirectly.

[Barb135]

Were you having hypo symptoms in March when your doctor increased your dosage from 88 mcg to 100?  Your FT4 was only at 41% of its range, but if you felt good, there's no reason you couldn't have stayed there.

It's unfortunate that there were no Frees done in December, as it's really hard to tell what's going on from just a TSH.  In October, your Free T4 was at 61% of its range; rule of thumb is for FT4 to be about mid range, so you were higher than necessary.  On the other hand, your Free T3 was only at 25% of its range and rule of thumb is for FT3 to be in the upper half to upper third of its range.

Some symptoms can cross over/apply to either/both hyper and hypo.  Anxiety, depression and fatigue are some that do.  Looking at your current TSH of 3.8 and your low FT3 in October, I'd have to wonder if you're converting the FT4 storage hormone to the usable FT3.  

Is the new endo the one who ordered just the TSH?  If I were you, I'd sure be questioning why s/he didn't order the FT3 and FT4, because trying to dose on just a TSH is like trying to shoot a moving target.