Miserable symptoms with Hashimotos

[miserable_mom]

In my doc's eyes I am managed with my Hashimotos disease and he doesn't know anything else he can do for me. I am presently on Armour a split dose of 2 grains a day. I have been on Synthroid and cortef in the past.I however feel as I'm just a shell of a person who suffers day in and dayout. I'm truely a miserable person and I know I must be hard to live with. I do not work because I am unable. The fatigue is so severe. I go through periods of either not being able to sleep even though extremly tired or excessive sleepiness where I have to take two or three hour or more naps throughout the day. I havn't felt refreshed from sleep for more than three years. My eyelids always feel heavy. I suffer from eyelid twitches(more than 6 months)extreme muscle spasms occurring anywhere in body on a dailey basis. Frequent headaches, sore achy muscles, extreme brain fog with periods of zoning out. I get depressed because I have a hard time dealing with all of this. My resources feel so low and I know I am not being the mother or wife that I should be.(also o% sex drive, I could care less if I ever have it again)
I'm truely miserable and I just want some relief. I've dealt with varying degrees of syptoms (symptoms) for 10 years now.(I'm almost 35)I feel I am too young to feel this tired and weak. When I do exert myself even a little it usally results in being in bed for days. I feel like I am at my wits end. I have done a lot of research in the past(I mean a lot)but I just can't help myself anymore I just feel too weak.  Thanks for letting me vent. My 1600 char. are gone. -D

[Mark Lupo, M.D.]

Why were you on cortef in the past? - If truly adrenal deficient - this should be continuous therapy.  

The armour 1g twice a day is a good regimen and if the TSH is at target -- 0.5-1.5 in your case typically -- from a thyroid standpoint there isn't much more to do.

Other endocrine issues?  ie, normal menses, no breast discharge, no increased thirst/urination.?  I presume you have had blood counts, liver, kidney function?

The achy muscles may mean a rheumatologic condition - worth looking into.  Perhaps a sleep evaluation may be helpful as well.

Good luck.

[Catastrophia]

I feel the same way you do. I'm 49 and found out appx. 6 mo. ago that I have Hashimoto's Thyroiditis.My TSH was at a 20 and the dr. put me on 25mcg. of Synthroid.My level fell to a 13.He then placed me on 75mcg.That's when all the pain,insomnia,swelling,and
depression really hit. I told him that I felt worse than ever. He said that I just needed an increase.But he took my thyroid levels again. They were perfect. He said to stay on 75mcg. of Synthroid. I continued to feel worse.He switched me to Armour Thyroid at 60mg. because I was soon going into the hospital to have an ovary removed. I was having heart palpitations.He let me cut my dosage in half.My thyroid levels went up.He said to go back on 6omg.I guess it's more important to some drs. to have the thyroid levels right even if you feel like you're going to have a heart attack during surgery.Not to mention the pain,etc.I need to go to an endocrinologist but I can't afford any changes now.I have to look for a job after recovering from surgery,but don't know how I'll be able to hold one.I'm also in a fog and think that it's fibromyalgia. That goes hand in hand with hypothyroidism. But good luck.Maybe someone will find out what going on with all of us that are having problems with meds.

[miserable_mom]

I'm sorry you feel so bad. I hope they can find a better way to deal with our symptoms too. We shouldn't have to suffer this way. I hope you feel better soon! Take Care!
-D

[miserable_mom]

I was on Cortef for 90 days. He said he did not want to keep me on it longer than that because it was unsafe. I'm not sure if it really helped or not during that time.
I have been tested for other things included liver function. I do not have normal menses and never have.
He says my achy muscles could be fibromalgia. Is there a test for the rheumatologic conditions?
My last labs were:
TSH- 0.00                           range  .350- 5.500
t4, Free(Direct) 1.40               range .61 - 1.76
Triidothyronine, free, serum 4.6    range 2.3 - 4.2

When these results were sent to me his side notes said "All OK"

Would you concur with this?

-D

[Mark Lupo, M.D.]

A TSH of 0.00 is too low - this means your pituitary (brain) is interpreting the armour dose as too high -- this is also reflected in the elevated T3 level you mentioned.  Often over-treatment with thyroid hormone can cause several symptoms including those that you have.  I would recommend decreasing the armour - perhaps 60mg in am and 30mg in mid afternoon and recheck the tsh in 6 weeks -- again goal is 0.4-1.5 (give or take - this is debated amongst endocrinologists)

Rheumatology evaluation may include blood tests such as ANA, RF, sedimentation rate -- but if your symptoms persist, would see a rheumatologist.

Also if symptoms persist - re-evaluate the adrenals (possibly ACTH stimulation test) and with the abnormal menses check testosterone and prolactin at a minimum....

[miserable_mom]

Thanks for the comments. I've been going to my Dr. over 10 years
but now I think it is time to try someone else since I seem to be getting worse than better.
Let me ask you one more thing, do you believe that low body tempature plays a role and can you go by that when adjusting thyroid medication?

-D

[Mark Lupo, M.D.]

body temperature is not a reliable way to titrate thyroid medications

[Cattie]

I'm alarmed to hear you've been going through this for ten years.  I've done a year with no answers, and a doctor today essentially told me to snap out of it, and wrote off my symptoms as depression and IBS.  Don't think I could bear another 9 years of feeling this awful before someone takes me seriously!

[ShannieK]

Hi am just commenting on something you printed above, this might shed some light for me alittle bit.  last year when I was so sick, I was put on thyroid meds and got better, but before i went in I had engorged breasts, it was so strange, and with all my other symptoms I believed i was pregnant, but I wasn't.  docs were stumped because they didn't feel it had any connection to my thyroid problem, but found no abnormalities anywhere else.  Is it a sign or symptom of another endocrine problem that maybe was missed? Just curious, With all the talk with people suffering from thyroid problems, that has always been one symptom that I never had in common with anyone.  Could it have been related to my thyroid?  After starting treatment, it went away, but it took a long time,  All my other symptoms like disappeared overnight, but this took probably 2 months or so to go back to normal.

[miserable_mom]

Hi Cattie,
I'm sorry to hear you are going through the same things. I knew I wasn't alone and my heart goes out to everyone who suffers like this.  Yes, I too suffer terribly with IBS. I've also been labeled ADD, witch I can trace back through childhood, but it makes you wonder if I just havn't always had thyroid problems. I was first DX w/hypothyroidism during the pregnancy of my 2nd child-who's 10 now(hypermesis gravadurium w/ both pregnancies)I was giving synthyroid. Over the years I have been DX with many things
and been given various prescriptions for(band-aids) but now I know that everyone of them can be linked to the Hypothyroidism/Hashimotos.
My Dr is a GP but claims to have treated over 600 thyroid patients and they are all doing great except me. I went to a Endo once and it was such a nightmare! First off it was an hours drive one way, I only got to meet the Dr once and then it was always the NP, got my slew of bloodwork mixed up with another person w/ my same name(they had their own onsite lab)and prescribe me a 6wk dose of mega high vitamin D that I didn't need(which was caught and stopped in the 4wk by me with I requested a copy be sent of my labs)plus the staff was really unfriendly and treated us like cattle. He also didn't believe in Armour so I went running back to my GP but I have lost faith in him awhile back also. I live in a rural area and I am bound by network Drs as determined by my ins. co. I however, do not seem to be getting any better by switching to the Armour either following 1000's of others in other forums who advocate self treatment and herbal supplements and various vitamins. I have only been extremely bad for the last three years. I think I could put up with all the other symptoms if I just could get some relief from always constant fatigue that plagues me. That's what I can't take, I would rather live with a constant toothache for the rest of my life. I pray each and every day for me to be able to wake up and snap out of it.
My plans now are to seek out another Endo on my plan and pay the specialist co-pay whitch I don't have because at this point I'm not a lot of use to my own family let alone to an employer, and hope that I get someone like the Drs on TV who make it their personal mission in life to see to it that i get a better quality of life and not another someone who will stick yet another Band-Aid on it.-  
I know I am ranting and that's just what I have been reduced to these days. I surly don't what to worry others
w/ my nightmare and I hope that my experiences have just not been the norm.
I know this has been long and if you've read this far "God Bless Ya" I will keep you and the countless others in my prayers that we will all be able to lead normal lives one day and that even if it last all of our days here it still won't be forever.
-D
I'm just mad with our healthcare system and why no one is working on a cure  or at least a better quality of life for us. I sometimes wish I had a more recognized disease that mega research dollars are poured into and we had better options in our treatment and that people have heard about. (My experience is people don't take thyroid problems as a bonafide debilatating disease)
If there is anyone out there that has been where I am and now leading a healthy productive life I want to talk to you!

[miserable_mom]

Now that ShannieK
has brought up that topic I am kinda wondering the same thing except I actually have what they said was probably a benign sisks in both of my breast. I go on Oct. 5th for a 6 month follow up ultrasound. Is this symptom indeed something that can be linked to the thyroid or some other endrocrine disorder?

[Mark Lupo, M.D.]

unlikely that breast cysts are related to thyroid

the breast fullness in hypothyroidism is sometimes caused by an increase in prolactin production by the pituitary - this is the "milk let-down hormone" that increases so that women can breast-feed after pregnancy.  In the case of underactive thyroid the pituitary increases its TSH production and sometimes the prolactin production also increases.

[ShannieK]

Thanks for getting back.  Just making sure it was still all thyroid related, and not dealing with anything else.  Thanks for your comments, and thanks so much for taking the time to help all of us.  Shannon

[miserable_mom]

Yes ditto what Shannon said. Thanks for your time!

[Cattie]

I really sympathise with what you are going through and really can't imagine feeling like this for ten years.  I told the directors of my company today that I didn't feel I could do my job (I co-run the company) anymore and would have to quit.  But instead of losing me, they are not prepared to let me wait for however long it would take for me to get an endo referral on the UK health system, and are paying for me to go private.  I've always been so stoical, but it's liberating to finally admit I need help and for it to be there for me.  Hopefully this is a breakthrough.  I'm angry at being dismissed by doctors, and really hope going private will isolate what's actually wrong this time.

[miserable_mom]

That's wonderful news! I hope it all works out for you
and you are able to get some relief. Please keep me posted
on your progress.
Take Care!
-D

[doodlebug1]

Miserable Mom, I have noticed that LOTS of us hypo folks have low Ferritin, which is storage iron, and it can cause the exact same symptoms as low thyroid--including depression, achiness, fatigue. I discovered I had extremely low Ferritin, and also had all of the above symptoms, so I highly recommend you get that tested. And don't just get your "iron" tested--you can so-called normal iron, and yet have undetected low Ferritin, I've learned.

I also discovered that I was unable to raise my Armour, which I needed to do, when my Ferritin was so low. My doc put me on high amounts of iron, and once I finally got my Ferritin up to 70, I felt SO much better. I also discovered that I could raise my Armour, which was giving me problems when my Ferritin was so low. Today, I am at 3 1/2 grains. My doc has also learned that dosing by the TSH leaves her patients still hypo!!! So, she pays more attention to the free T3 and free T4, and even more, she pays attention to SYMPTOMS.

I also have found that going by temps DOES make a difference, unlike what was said here. Before I got on Armour, and before I found the great dose I'm on now, I consistently had LOW temps. Now that I am on my optimal dose of Armour, I have a before-rising temp of 97.8 - 98.2 and a mid-afternoon temp of 98.6--and those are exactly what is recommended. You have to use a mercury thermometer.

Also..you mentioned being on Cortef, but I don't see you mention why you were on it. Another thing I've learned is that LOTS of hypo folks seem to have sluggish adrenals. Do you? I never did, but many hypo folks on a natural thyroid hormone group I belong to, do! Sluggish adrenals mean you don't produce enough cortisol, and cortisol is needed to distribute thyroid hormones from your blood to your cells. You might want to get that checked. Most docs do a one time blood test, but you really need to do something like a 24 hour adrenal saliva test. It tests you 4 times during a 24 hour period. You could have a NORMAL reading one time, but not the other three---thus the need to do a 24 hour test. ZRT labs has one you can do.

Hang in there. I HAVE been where you are, and my life changed 360 degrees thanks to finding a doc who allows me to dose by SYMPTOMS, not just labs, and corrected my Ferritin.

[doodlebug1]

By the way, Miserable Mom, I forgot to mention--I've known a few folks who also had a high free T3 and yet still had the symptoms you are having. With them, they either had low cortisol, or low Ferritin---so the T3 was not getting distributed from their blood to their cells. It wasn't because they were on too much Armour.....I read about them on Yahoo groups natural thyroid hormones group..

[ancientmariner]

I had RAI for "Graves" diagnosis 3 years ago and was on .125 Synthroid for 2-1/2 years, and felt horrible. So I asked my PCP to try Armour. I was at 1.5 grains of Armour and felt terrible, too. So I started researching, and changed to a Naturopath/D.O. I read that low ferritin can cause many of the same symptoms, so I asked the ND to test that, and he did. (I see that Doodlebug mentioned ferritin, too....) He also tested Free T3 and Free T4, and for the first time, antibodies! . My ferritin was fine, I was just very hypo on 1.5 grains. But, when I tried to increase the Armour, I had heart palps, nervousness, etc. So the ND tested adrenal function using the Adrenal Saliva Index test. None of the other docs I had seen even knew about testing adrenals. I had adrenal fatigue, so he put me on adrenal support, and then I was able to raise Armour slowly to my current dose of 3 grains. At each raise, I felt a little bit better, but I know there's still room for improvement. But my TSH now is below the accepted range. My doc says that TSH doesn't mean much when you have antibodies, or when you are taking thryoid replacement, so don't allow docs to dose by it. They should dose you by HOW YOU FEEL!

[doodlebug1]

Hi LowMac. Since you said that you welcome comments from other patients, all I can tell you is that paying attention to the free T3 and NOT the TSH made a huge difference in my treatment with combined T3/T4 treatment.  When I was treated by the TSH and thus left in that terrible range, I had MANY lingering symptoms like yours--symptoms of those listed as CFS, hypotension, low tolerance for any activity, body aches!! I then joined a few groups and to my amazement, discovered MANY other folks just like me--being treated by the TSH and still being sick!!

And docs did the same thing to me--telling me that those symptoms might be "this" or "that", ruling out "this" or "that". I went YEARS in misery with no definitive diagnosis other than "it might be CFS", and "it might be an energy metabolism disorder akin to Glycogen Storage Disease" or "it might be the lingering effects of your acute Epstein Barr Virus"! It was only when I found a doc to stop treating me by the TSH that I got better!! All along, it was an undertreated thyroid!!

I don't take away that you might have other issues that have been mentioned here, but I strongly suspect that other issues you have described are because you are being treated by the TSH and not being allowed to raise that free T3!! I found a doc who allowed me to dose by symptoms, and when my symptoms were gone--the exact same symptoms you describe--we did labs--my free T3 was at the top!! And there is PLENTY of literature out there to substantiate this, not withstanding MY experience!!

And by the way, when you do research--and you'll find reference to this many places--you find out that the most accurate labs are done BEFORE you take your thyroid t4/t3 meds, such as in the morning. Why? Because the direct T3 in dessicated thyroid or T4/T3 combined meds rises about 2 hours after you take it, then falls. You want to do labs before that.

[ArmourGal]

On the breast cysts, I know a number of women who have had breast cysts from being hypo.  Hypothyroidism can cause a number of skin changes, and cysts and boils are a symptom.  During the time I was undiagnosed, I had two breast cysts removed as well as facial cysts and one shoulder cyst.  

Also, my very first symptom of hypo (after childbirth) was breasts leaking.  Evidently that's when my TSH rose at age 24.  Since I did not get diagnosed then, my pituitary probably was affected eventually, and then my TSH could not rise appropriately. I was exhibiting the final stages of hypothyroidism before I got diagnosed at age 48.  This is probably a reason why the TSH misses about a 1/3 of those who are hypo.  

For those wanting relief from hypo symptoms, my own experience is that Armour is the best medication for relief of all symptoms.  And with Armour, avoid dosing by the TSH.  The normal feedback loop is broken with the introduction of oral thyroid hormone and the best therapeutic goal is to get ones Free T4 over the midpoint of the range and the Free T3 at the higher end of the range or slightly over.  One should of course monitor temperature and pulse.  

I think it is so important to have enough thyroid hormone to get rid of hypo symptoms.  If you don't, you risk further health problems.  I have been cured of so many things that I had over the 15 years before diagnosis - chronic fatigue, IBS, asthma, anxiety, neck and shoulder pain, carpel tunnel, skin disorder, menstrual disorder.  All of it has been cured now...and I only take one medication - Armour.
Cindi

[JEPG]

I found out recently that all the women on my Dad's side are at risk or have Hashimotos. I was encouraged to have my thyroid antibodies tested. They were 339. It said that the normal range was <35. I have had problems with my thryroid for several years. I am currently not taking any medications. I do not feel good. I am tired, swelling, thirsty, no sex drive, can't lose weight, etc. Can anyone advise me? I see my endocrinologist the first of November.

[doodlebug1]

Your post was so low down on the list that it is lucky that I saw it. LOL. You know, from the amount of folks I have seen in the groups I belong to, a person with antibodies as high as you NEEDS to be on treatment. Your thyroid is being destroyed!! Of COURSE you don't feel good!! And by way, most Endo's tend to put folks on T4-only meds, like Synthroid or Levoxyl. Lots of us, myself included, found that natural thyroid hormones, also called Armour, did a FAR better job of tackling our hypo that T4-only meds. Maybe you could type in Google "natural thyroid hormones" and learn about it before you go in to see the Endo. When it comes to good thyroid treatment, YOU are your own best advocate.

[Kris39]

Hello, I have been reading the posts and I have a few questions. Before the questions let me give you a snapshot of the last three years of my life.....I went through and extremely stressful event in my life and when I first became tired and sluggish we dismissed it as stress....then things calmed down and I became more and more tired had anxiety attacks and felt like I was in a fog...started gaining weight so my doctor prescribed antidepressants...which after trying 8 different ones nothing got better...I had side effects that he had never seen...I went to a pschychiatris and he tried 6 more drugs with the same results...I went to a wonderful therapist but he thought that I was just tired from worrying not from actual depression....then I started getting every cold, flu (which turned into double pnuemonia (pneumonia) last year) and none seemed to go away...then I started retaining fluid and my periods became irregular and heavy....all the while my brain fog continued then my hands started looking like they belonged to an extremely elderly person and my hair started getting dry and falling out...my pc doc sent me to a gyn and last week she found a couple of small cysts on my ovarys two on the left (under 2cm) and one on my right consistant with ovulation....she was looking at the blood results she had ordered and told me to forget about the rest of her findings and get over to the lab for another test on my thyroid....she said she was really concerned with my tsh levels....I was too stunned to ask what the number was but from the look on her face I knew it couldn't be good....actually it was a 13....I am waiting for the results of the thyroid panel that she requested and I'm hopeful that she will be able to finally help me to feel at least a little normal again....I am currently so tired that I actually began to believe that I was dying....has anyone ever felt spacey when getting out of bed....sort of disorented and had thoughts that maybe you were losing your mind???  Does anyone know if ovarian cyst have any connection to hypothyroidism?  Once you are on the correct medication....how long does it take to usually help with the symptoms that I'm having.....extreme fatigue, brain fog...etc..?
Are there any connections to the heart and Hypothyroidism?  what about low temps....my normal temp is 96.5 and when I had the pneumonia my highest temp was 98.9 and the pneumonia was only found by doing x-rays after I could not get up or move....Thanks for reading all of this.....I'm hopeful that things will get better soon but I'm also scared to death.

[doodlebug1]

Hi kris39. You are describing so many of the symptoms I had before I was first diagnosed: the fog, the depression, weight gain, sluggishness, tired, dry hair. I even had the disorientation you describe--that was AWFUL. I didn't have the anxiety attacks, but know of SO many other hypo folks who have with their hypo. And I DID have NUMEROUS colds and the flu, plus pneumonia twice. It was a maddening time. As far as the cysts--I never had that. But nothing surprises me anymore as far as potentially being connected to having hypo.

You asked how long does it take to help with symptoms on "the correct medication": the last three words hit the nail on the head. Most everyone is put on T4-only meds like Synthroid and Levoxyl. T4 is simply a storage hormone. And when you pay attention to what is going on with others, they never, ever fully rid themselves of symptoms. I was on those T4-only meds for 17 years and suffered miserably---always being told that my problems were NOT my thyroid or the meds. But they were WRONG. T4-only meds do NOT do the job. I switched to Armour, which is also called "natural thyroid hormones"--you can type those three words into google (with quotes around them) and get good info to read. And it turned my life around in a MAJOR way. I now have the energy and stamina I NEVER had, no chronic low-grade depression, no foggy thinking--all which continued while on T4-only meds.

As far as how long does it take--I started on 3/4 grain, and noticed improvement within a few days!! Some start on slightly less; some start on more. But, I learned that it's important to keep raising bit by bit until you rid yourself of symptoms. I found a doc who dosed me by SYMPTOMS, and NOT the TSH. We paid attention to where my free T3 was--working to get it to the top of the range, where it is today, (which puts my TSH at .009), and I am NOT hyper. And, I paid attention to my temps--looking for a before-rising temp of 97.8 - 98.2 and a mid-afternoon temp of 98.6 (all using a mercury thermometer, by the way). I am now at 3 1/2 grains and holding, a perfect temp, no symptoms, and I feel fantastic.

[jds1]

I also have hypothyroidism and have been taking synthroid and cytomel.  I noticed a remark about a connection of low ferritin levels and thyroid disease. My most recent tests show TSH .69, T-4 1.42, T3 4.61, and Ferritin 32.  My doctor said my ferritin level is fine and within the 7-250 range but I do have symptoms of fatigue and brain fog.  I've been searching on the internet to find a more specific range for a healthy ferritin level.  Does anyone know what that is?

[Shaina3143]

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