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!

[NewVoyages]

You sound just like I did. I actually had somneone tell me that I needed to see a psychiatrist. I was really hypo. I had Hashimoto's for 4 years undiagnosed, even the endocrinologist didn't diagnose it. I finally got my thyroid out due to cancer. Went really hypo 2 weeks after that. My legs went totally numb went to the ER they didn't even treat me they told me my numbers were good, fat lot they knew they were terribly low. If I hadn't called the oncology surgeon i'd have probably croaked. Couldn't hardly walk. All these years they were tellin me it was my neuropathy, but it was Hashi's. You're not crazy, and I totally hate that Dr.s don't have a complete understanding of what is going on with a person. You hang in there ok. There's always people out there you can talk to. I've been there too.

[Sesha3]

Have you been checked for an underactive pituitary? I've suffered with an underactive thyroid for years & was only recently referred to an endocrinologist who did some blood tests. These showed I was low in other hormones too (prolactin, vit D & growth hormone) & I'm having an MRI to look at my pituitary gland. With an underactive pituitary; the TSH is low because it's not stimulating the thyroid to make thyroxin & that is what causes the problem rather than telling you that you have enough thyroxin. On the other hand; if it is just an issue with your thyroid gland then low TSH should mean you have too much thyroxin. Hope that makes sense.

The growth hormone deficiency is what's causing my fatigue & aches & pains as well as other lesser symptoms & the reason why I wasn't feeling better even though I've been taking 75mg thyroxine. It's worth asking your doctor to check it out.

[TamraW]

I will message you, but for everyone else, it is

thyroidpower . com

I had to space it. Hopefully, it will show.
:) Tamra

[dani2776]

Thanks so much!  It helps so much to hear from others who have suffered and have gotten better!!!  

[dani2776]

Thanks for the advise but as you can see the website is not showing.  Can you message me with it?  I don't know who that doc is but I am willing to look into it!

[jennerfennerbenner]

I felt exactly like you, even wondered if I was ever g oing to get better.
I definitely think you are still hypo, and an increase in med will also make you feel a little whacky until it balances out for you.  My biggest advise is to be patient.  Which was my BIGGEST problem-I was far from patient and it made my condition worse because I didn't give anything time to work and level out.  I feel the best I have ever felt in my life but it took a good year to get here. Please keep me posted

[TamraW]

Mary Shomon recommended a sun lamp, but those are 200 plus dollars. I go outside whenever I can. It works better for me than D pills.

Dani, have you considered a coaching session with Dr. Shames? I don't know his rates, but he might be able to help you pinpoint if you have something else triggering your swelling. Below is his website:

http://xxx.xxxxxxxxxxxx.xxx

:) Tamra

[stella5349]

Dani's Vit D  information is exactly what I have been reading about and talked over with the interviews I have had with some expert doctors on hormones.

The medical world has put out that we need more Vit D - but there is no talk about what Vit D really is..

and it's misleading calling it a vitamin when it really is a hormone.... Maybe the term will change and call it Hormone D-3 instead of Vitamin.

You can not say one particular SAFE dose of it. It all depends on where you are at with it in your body ( it is NOT water soluable as the B's and C's are) so it does require some work keeping it right.

Dosages range from 2000iu's to 20,000 iu's daily or you hear alot doing it every other day or even once weekly. Why? - again - because of its hormonal effects on all the "feel Good" levels like seratonin  and dopamine. Also because it effects all the brain hormones if the brain is getting the right mix then the other hormones will accept the brains response to feeling better and they will then too. Here is where the link is to thyroid hormones with Vit D-3. TSH- pitutiary response well to the other brain hormones - tells the thyroid - ( or the thyroid meds) things are good on my end and the thyroid hormones are saying - Great we can push out what we need too.

then the other cycle of other hormones respond to those. Understand?

I have not seem the D-3 I was told to take like at Walgreens or other main chain drug stores. I have a pharmacist in my town that carries particular supplements. She is a small pharmacist - but agrees with alot of Intergrative methods of healing. I trust her and this D-3 I take as a liquid - is great. It makes a big difference for us.

Dani - call your doctor. Ask about taking to start a 4000iu of D-3 daily and see what he or she says. I am pretty sure your doctor will support you on that trial dose based off your labs and you will be happy with the results in a few days.

[Eloquin]

Here are some things that will help:

the medical world is not universal in agreement over what the "Right levels" are for a lot of hormones and vitamins. Vitamin D is no exception. I can't tell you how many people I have seen that had a similar story and their Vitamin D level was in the low 30's. A lot of newer doc's agree that  a healthy person should not be lower than 60! and if you have a range to look at, aim to be in the middle, not on the low end.

Next, you need to look at your diet. There are foods that will slow down your thyroid if you eat them raw or lightly cooked or steamed. these foods are: Broccoli, Cauliflower, Cabbage, Brussel  Sprouts, Turnips, Rutabegas, green leafy vegetables.
They block your thyroid hormones from being all they should be by blocking iodine from your blood. If you eat any of those things listed above you should cook the heck out of them because it destroys the enzyme responsible for blocking the iodine.

Your estrogen was very low as well and that effects all sorts of things in your body. remember, when looking at the "normal range" it is not ok to be in the bottom of that range, you will still have negative effects. Aim to be mid range on all your results and you should feel much better.

Don't let your fatigue stop you from doing light exercising. You may feel like hell but get up and just walk around the house for 20 minutes every day. Your heart needs the exercise to not get weak. you don't need to walk fast you just need to keep moving for 20 mins strait.  

[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!

[blsdnsvd]

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

[stella5349]

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

[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.

[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.

[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..........

[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

[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 :-)

[TamraW]

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

[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!!

[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!

[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

[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!

[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]

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.