Please Help I don't want to die but I don't want to live like this either!

[dani2776]

Someone please help me! Please tell me this is all normal, tell me I am going to be ok! I have Hashimotos, diagnosed last April.  It is coming up to a year and I am still struggling.  I CAN NOT keep going like this.  I had a brief period where I felt better but it keeps going downhill!  I am back to thinking that there is something else wrong, something that they are missing.  Here are my symptoms.  Fatigue but cannot sleep, depression with anxiety, dizziness but not room spinning.  I feel like I am drunk, equilibrium is all off.  I can't walk straight to save my life.  Vision is blurry but yet eye exam is normal. My hands, feet, and eyes are swollen.  I am cold but yet having hot flashes.  Heart rate is slow but yet have periods where it is racing. Internal shaking sensation and tingling sensations as well.  Here is a list of my most recent labs.  I was just increased to 50mcg from 44 on my Levoxyl.

September (when I felt my best)
TSH 2.060 (range 0.40-5.600)
FT4 0.84 (0.61 - 1.12)
FT3 347 (230-420)

December 2nd
TSH 4.420
FT4 0.76
FT3 295

December 22nd
TSH 5.810
FT4 0.71
FT3 305

January 11th
TSH 7.160
FT4 0.69
FT3 353

I really can't live like this anymore!  I am at my wits end and what I am experiencing is not fair to my family either.  This is no way to live, please help!

[Barb135]

Your TSH is definitely in the hypo range and your FT4 is particularly low, even though it's within range.  Your FT3 is not bad, but there's still room to bring it up.

In my opinion, according to both your labs and symptoms, you are still hypo and need a further increase in your med.  When was your last lab (Jan 11)?  and was the increase in your med done after that lab?  When are you scheduled to be retested?  

Have they checked other things like vitamin b12 levels, vitamin D levels, or anything like that?  

Don't give up hope -- I'm going on 2 years and am just now getting to the point that I feel good more often than I feel bad.  Getting down the road to recovery takes time and patience.......and when you run out of patience, you need to find some more, then even more ----

Hugs

[dani2776]

So do you really think these symptoms are all related to thyroid?  I have been on the 50mcg for 3 days now.  He increased me before but after 5 dyas I felt hyper so I backed down to the 44.  Looking back I think I was hyper because of my period.  My doc wants to increase me again to 62.5 but I'm scared because I have not been on the 50 long enough yet and I am very drug sensitive.  They did check the B12 and it was 444 with a normal range of 180-914.  They also did a Vitamin D which was 32, range less than 30 is deficiant.  Also he checked my estrogen level and it's 38 with a normal range of 18-480.  I go back to the endo on February 9th and have my labs done a week before.

[rhoda23]

Remember, high TSH = hypo thyroid (low thyroid)
low TSH level= hyper thyroid (high thyroid)

TSH is thyroid stimulating hormone, not the actual thyroid hormone itself.  there is a difference. T3 & T4 are the actual thyroid hormones themselves.  

many people get this confused.  barb is confused about your labs.  talk to your doctor about your concerns.  your TSH level is actually very good, a bit on the hyper side, which means higher metabolism.

[rhoda23]

ignore my post, never mind,  obviously i can't read,  i was looking at the first lab work in sept.  sorry

[dani2776]

How can I be hyper with a TSH of 7.160?

[magpieannie]

You can't be hyper as your TSH is too high and your freet3 and freet4 are too low. You are hypOthyroid. My daughter is nine and was born without a thyroid gland, and she feels much better when her freet3 and freet4 are kept higher in the reference range with TSH very low. She is not hyper in any way. When her t4 was higher (on Synthroid) and her freet3 was lower, (conversion problems) with a TSH mid range she had LOTS of health issues (constipation, muscle pain,emotional, cold, heart palps(pvc's)). In addition, when she was affected on the reformulated Armour and her freet4 dropped into the lower part of the reference range as yours is now, she also had lots of hypo. health issues. (joint pain and fatigue). I'm sure that part of your issue is getting adjusted to the Synthroid, but more of it is that your thyroid hormone levels are too low, which is why your TSH is elivated. Your body needs more available hormone for it to function properly. If the Synthroid does not cut the mustard over time, then don't be afraid to switch to desiccated hormone. Nature-Throid should be shipping out soon to pharmacies. My daughter has been on it for 5 months now and it is working really well for her. No hypo. health issues and she is finally doing great again. You have to figure out what med and what levels work best for you. Everyone is different.What you don't have to do is accept feeling like this forever. You can figure this out if we did, so don't give up.There is light at the end of the tunnel,but you have to get going in the right direction if you are to find it. A book that helped me so much is "Overcoming Thyroid Disorders" by Dr. David Brownstein. It's available on Amazon.com. It's an easy read and he is "right on". I hope that I've been of some help to you.Good luck and God Bless!

[chuckpiv]

I am currently at a TSH level of 2.1 and am experiencing every symptom you described.  We just raised my levothroid and the symptoms are beginning to fade away.  Just wanted to reassure you that an increase in meds and a little time will make things better.

[Barb135]

Not everyone feels good with a TSH in the "normal" range -- my TSH currently is only 0.01, so those who look only at TSH would definitely consider me hyper (even my pcp does that)........but if you bring my TSH up to even 0.1, I feel "yucky"......because at that TSH, most likely, my FT's have dropped lower than *I* need them to be............

I certainly think that both your symptoms AND your labs indicate that you are still hypo; however, 3 days is not nearly long enough to tell if the dose you are on is going to be okay.......it takes 5-6 weeks for you to get the full effect of a dosage change; then you need to be tested again.  

With your FT3 "bouncing", I'm not sure I would recommend a T4/T3 combo such as Armour because you can't control the amount of the T3 there and it looks like you must be converting T4 to T3, so I'm not sure you NEED additional T3.  Even though you have room to "tweak" on your FT3, I'd be real careful as too much FT3 will send you over the top.  I would most definitely prefer to be slightly hypO than to go hypER.  

I think you need to wait a few weeks, then get retested.  If you aren't feeling better and your levels are not coming up, then ask for an increase........being really sensitive to medications, you need to make your increases VERY slowly in order to let your body adjust.  

Patience, my dear, patience........

[hmarria]

your story is just like mines.....your TSH is high and I think if you are feeling symptoms then no one should doubt it.
when I look at your september's thyroid profile where you have mentioned you were feeling better over all at

TSH 2.060 (range 0.40-5.600)
FT4 0.84 (0.61 - 1.12)
FT3 347 (230-420). you were feeling better becuase I think your doctor just put you on thyroid meds....so no wonder your body would take the medicine deperately, because you were in real need. but I think, the dose you were on was not quite enough to sustain the effects of hypothyroidism....thats why you eventually started experiencing symptoms. then in december

December 2nd
TSH 4.420
FT4 0.76
FT3 295

both Free T3 and Free T4 came down a bit and so was your TSH came up. I also contribute this towards "insufficient dose".then again in december

December 22nd
TSH 5.810
FT4 0.71
FT3 305

the same pic but TSH was even more increased than last tested. and look your FreeT4 also has started to come down a bit (I think its classical of low dose of thyroid hormone).

And finally in january,

January 11th
TSH 7.160
FT4 0.69
FT3 353

what esle do I need to say. I think, its obvious your dose is quite low, I dont think you need armour or T3 meds, you just need to put on an increase dose. what about your weight? do you have difficulty keeping it off?

my doc lowered my dose back in september 2009 and I developed symptoms in 2months...I still have bad symptoms as yours, so my doc has increased the dose to 125MCG from 112MCG....earlier I was on 150 MCG. whether is about decreasing or increasing the dose of thyroid hormone....I dont think so one should decrease it from150 to 112....neither should increase  too much all of a sudden. talk to your doctor about ths matter and ask him why there is so much of a change in labs?? and tell hime these reports are consistent with your symptoms of hypthyroidism thats is not being treated preoperly. see what he says. if he is not sure of whether the dose should be increased.....then its time to switch to other doc.

recently I have taken a 3rd opinion from homeopathic doc too. if you need some help for other treatment modalities, then I 'll be happy to asisst you. take care and be courageous, I know its hard, really hard.....but we have to fight....fight till death, so annoying yet challenging. but we can give hopes to everyone here on this forum.

[dani2776]

Actually I have been on meds since April of 2009 but September labs were the first time EVER that I was able to increase from a measly 25mcg, it was a tough time!  My endo said the antibodies are just destroying faster than i can keep up with meds.  This is just so horrible.  I never would of thought this tiny gland in my neck could control and ruin so much!  As far as my weight, that is a big issue as well.  In September I had FINALLY managed to lose a total of 28 pounds but boy is it back.  I would be interested to hear about the homeopathic doc since I thought all they would do is give me Armour and I agree that I don't think I need a T3 medicine since that is the only thing that has reamained somewhat stable.

[hmarria]

well dani, I just have consulted a homeopath doc (he actually is a surgeon from dominican republic,since in canada, started practicing alternative/integrative medicine) and I had my visit yesterday, he obviously isnt covered by anything (I had to pay him, but I and my husband didnt think about money since I am so over whelmed with this disease)
in first visit he listen to me without showing any signs of "hurry".....which you usually dont find while seeing a doctor/specialist. he talked to me about my disease(hypothyroidism) for an hour, and then he told me you have signs/symptoms of adrenal fatigue so he ran some tests. he has also given me a supplement for thyroid and adrenal support, it has some vitamins too. he has asked me to do a salive test(24hrs saliva collection for cortisol and insulin levels) I have been told to start the supplement after I am done with collection of saliva (he has given me a kit for that test too....in canada they dont do the tests so I have to send it to US by courier).
I'll inform you everything including my test results and the effect of supplement he has given me with in a week or so.the name of the doc is "Dr.Ahmad Nasri". I had to go to other city and it took 3 hours from here. if you need any other info,just let me know!

would you mind telling me how would you manage to lose weight. weight is also a bug issue to me,especially after the dose was reduced, I kept gaining weight....I am 148Ibs and 5'4''. before diagonsing with the disease, my healthy weight was 135Ibs, after hypothyroidism, I now weigh 148.....it keeps on increasing.Did you workout everyday, because I tried and joined gym too but couldnt keep it up since I feel really bad after intense cardio workout. my blood pressure drops till80/55mmHg and I feel terribly exhausted. this homeopath doc told me not to do these overwhelming workouts since it might drain out your adrenal glands more quickly.....he rather asked me to do relaxing exercises like walk, yoga tai chi etc.

you definitely not need T3...but an increase in dosage!

[dani2776]

I had me adrenals and cortisol levels checked too and mine were all ok.  As far as the weight only thing I can think of is back in Septemeber my numbers were good and the weight started to come off on it's own.  I also felt good enough to work out to the "core secret work out" and I'm sure that helped too.  I no longer have the energy to work out at all and my endo too said nothing strenuous right now becaue I could hurt myself and it takes longer to heal.  Good luck to you.  Let me know how you make out!

[TamraW]

You are obviously hypo with bursts of hyper. I have read that nodules cause the hyper spells, as well as when the thyroid swells under antibody attack. I think I remember that you don't have nodules, so it must be the swelling.

Here are things I've done to alleviate the swelling: Tylenol, Selenium, NO CAFFEINE.

Next, ALL labs of yours are hypo. My periods did cause me to feel hyper. I am now on a low level of birth control and feel better.

Keep up with the vitamin D and B12. I don't think you will feel better until you continue to raise your thyroid hormone.

My levels are in the upper 1/3, but I still get the swelling. It lasted 3 weeks in December and I got another bump and felt better. I had to take a Tylenol III for the tough swelling. It really helps, taking away the nausea and dizziness. I don't take it every day, just a few times a month. I hope that when my thyroid finally dies, as yours is dying too, I won't need the Tylenol.
:) Tamra

[laura1967]

Your story sounds very familiar to mine.....until I found a good Dr who actually understands Thyroid diseases, especially Hashi's.
I was under a different Endo care and kept undertreated like you for over 2 years....I kept getting sicker and sicker and sicker even though I was on Synthroid and my Endo kept telling me I was fine.
My new endo is awesome and gave me a good education. He told me anyone with Hashi's need to keep their TSH supressed to between a .50-1.0 in order for the body to heal and keep the antibodies at bay. Anything over this and you will have hypo symptoms. Free T4 level should be at least a mid normal range. (This pertains to T4 meds only)
Now.....if you have conversion issue like me and take both synthroid and cytomel, you can only treat by the Free's. My Free T4 needs to be in the mid normal range and my Free T3 range needs to be high normal range in order for me to feel good.
Since under my new endo's care in the past year, I have actually started to feel better and not feel like I am dieing!!
He told me for the timeframe you have been sick and undertreated, it takes twice as long for your body to heal and recover, when at  optimal levels.
Even my thyroid isn't swelling as often.
I still have a down day every so often, but I am finally feeling a difference!
I hope this information is helpful to you.
Find a Dr who actually specializes in thyroid disease and understands autoimmune thyroid disease....there aren't a whole lot of endo's that do. Don't give up!

[dani2776]

Thank you so much for the advice.  My endo actually told me he wants my TSH down to 0.5-1.5 so pretty close to what yours said.  I just don't understand why if I am am hypo why I feel so bad.  I have the fatgue, weight gain, depression, etc but where is this dizziness off balance feeling coming from and why do I feel like I am crawling out of my skin?  You are right though, I DO feel like I am dying!!

[TamraW]

I get the dizziness and off balance when my goiter swells.
:) Tamra

[dani2776]

Thank you so much!  It is so good to see someone actually say they have that too!  I know I don't have a goiter or nodulessince I had the ultrasound done about 6 months ago but I can definately tell my thytoid is inflammed.  I feel like someone is choking me and I can see that it is swollen.  I guess I need to accept what is going on and stop trying ot convince myself that I must have MS :-)

[stella5349]

swelling on the thyroid during these attacks is very scary and painful for many. I use to compare it too the Simpson TV show with Homer wrapping his hands around Bart's neck and squeezing. DId you ever see that show and how Bart's face looked? - That... was me for sure.

Really once the attack starts with any of the antibodies - it is very difficult to control. My doctor is a big believer that - The thyroid will die off eventually from the antibodies beating on it - no matter what - but a suppression of those antibodies could keep you out of pain while the attack is happening. She also is a big supporter of selenium when you have high TPOab antibodies in the system.

I still have bouts of tightness in my neck... Pinpointing them.... its right around my period every other month. For me - I can link them to possibly being right around the ovulation process everyother month and they continue and get somewhat intense until the period is over. Another mystery I have not spent a ton of time on to figure out the mighty WHY. - and the other big mystery for ME is -- I really don't have thyroid left from RAI years ago. Last ultra sound showed my thyroid looking like a piece of thin yarn hanging way below - near my collar bones... So. - since my thyroid looks like a wet pair of nylons on a wire hanger... what's causing the tightness in MY neck?

I do know that hormones DO intertwine with each other and just because you had found Hashi antibodies that are upsetting thyroid hormone a reason - the other hormones within our bodies are whacking out to some degree too. Here I believe the key word is stability... finding that will subside some of that and only suppression from what I understand will halp gets us through it better. That is why I reach for selenium when I feel the attacks rearing up! - It does help me and I should really stay more consistant taking that daily - but I just don't

[Barb135]

I use the selenium also when I start getting that painful, choking feeling in my throat.  In fact, I had sort of slacked off on taking them and I'm now paying for it.  I do know it doesn't work everyone, and for me, it makes a difference in the type of selenium I buy.  I use a biocitrate in capsule form.  

As regards TSH -- mine stays down around 0.01 and so long as my free T's are in line, I don't worry about it..........

[shagg]

im a 39 year old male whose tsh is supposedly in normal range but it fluctuates sometimes seasonally with winter. i live in midwest, and much less sun in winter obviously, don't know if there is some type of correlation. but the point i want to make is, i felt close to normal, never have i felt like iused to before i started feel full implications of hypothyroidisim.  i am on .175 levothyroxine. i feel like something is missing from my health, something gone, don't know if it will ever return to normal. i feel more depressed than i ever have, some i'm sure can be attributed to stress, age, etc. i felt many of the same sypmtoms you had several years before i was diagnosed with hypo. i remember feeling vertigo at times, extreme anxiety attacks where i would feel i 'd have to check myself into the hospital(mental) and depression. i don't have many anxiety attacks anymore which i'm extremely grateful for, but sex drive is still low, doesn't feel as good, and i feel very frustrated at times also and feel like giving up too. but keep your head up and do your research and good luck for now.

[stella5349]

I am in the Midwest too and I will say... This seasonal fatigue is horrible here. What I found supurb and has stop most of my thyroid blues ( an I have no gland at all) was starting a solid daily regime of a particular vitamin ( which is really a hormone) - Vit D-3.

There IS a difference in taking D. and the D-3 is fabulous. I am taking 20,000ius daily and none of those dark - sluggish issues with no sun are present with me.

I love the anti stress effect of it too. My husband who drives semi for a living locally and hates winter driving started this winter in 14,000 iu's - What a HUGe difference for him too. He feels more calmer at the wheel and get through the day with no stress. He was a basket case in past years when ONE flake of snow started flying.

[stella5349]

Was in a hurry posting this so if I wasn't clear on my thoughts rattling through my head....  just let me know :)

[blsdnsvd]

Can u purchase this particular Vitiman at a drug store???

[dani2776]

Do you know what the recommended SAFE dose is?  My Vitamin D level is "low nomal" according to my doc at a level of 32 so it probably wouldn't hurt to try some.  And if it helps stress too, well that's even better!!!  I remember reading somewhere that too much can be harmful so of course that worries me too!