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What happens when Hashimoto's goes untreated?
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What happens when Hashimoto's goes untreated?

I was diagnosed with Hashimoto's thyroiditis about one and a half years ago. My first symptoms were hair loss (extreme until I eventually lost all of it) and extreme fatigue, poor concentration and lack of coordination. I was very easily diagnosed, but the following TSH, T3 and T4 tests were normal. I had them rechecked 3 times and each time was told it was normal, so I have not been receiving any treatment. My symptoms have gotten worse and some are quite scary. There are now more neurological symptoms as well as personality changes. I am angry most of the time, easily frustrated, and my vision has severely deteriorated. I am very easily exerted and have chest pain and cough on exertion. All I want to do is sleep or lay around the house and am generally unhappy most of the time. I have gained a LOT of weight and I also have recurrent UTIs every 4 months or so.  I have sporadic muscle spasms and twitches, some can be quite painful. I am only 24 years old and I can't imagine living this way for the rest of my life. My question is, does this sound like an advancement of symptoms due to Hashimoto's being untreated or does it sound like a completely different problem? If my symptoms are so severe, why is it that my test results are normal?
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22 Comments Post a Comment
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620923_tn?1405964489
I was told I have Hashimotos as well  6 months ago- I go this Fri for 2nd U/S to see if there was any change in the nodule. I am not on meds either. Some of the symptoms u mentioned I have also, but contributed them to my other dx of chiari malformation and cervical spinal stinosis.
I would say get a complete exam!

Good luck
Godspeed
"selma"
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Avatar_f_tn
Can I ask why they did not give you meds at that time especially with your symptoms? I was diagnosed 4 months ago. My hair is still falling out but most of the other symptoms are gone I generally am feeling loads better.

The thyroid is very important it regulates so many body functions and if it is out of wack you can have a tendency then for other things to start failing. I would make an appt and get on meds right away. Find another doctor. What is normal for some is way too low on the scale for others. Do not mess around this could hurt your heart or worse or could lead to other autoimmune diseases. You are too young you must get help and get better.
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Avatar_n_tn
Actually, my family doctor did prescribe meds when I first went, but she mistakenly read the results wrong and gave me medication for an OVERACTIVE thyroid. It wasn't until a month later when I went to the endocrinologist that I found out what she had done. My endo told me to stop taking the medication immediately because my thyroid had basically shut down. (Yes, I changed doctors!) She took some blood that day, but the results were normal and so were the 2 subsequent tests I had. I have to admit though, it has been a LONG time since I have had it checked.

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519035_tn?1348279373
As long as theyve confirmed that you have it with antibody testing, then I would seek another doctor who will help you. I was diagnosed with it in may of this year. I was in the er, I now at least no why I have this chest pain, and palpitations. But time to find a doctor who will treat you.
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485028_tn?1222133202
I was diagnosed a month or so before finding the cancer with hashimotos thyroiditis however this didnt reflect really on my tsh or t4.  I think the disease can make your tsh fluctuate.  The test they did to determine my hashimotos was called THYROID ANTIMICROSOMAL ANTIBODY  I think there is a different name for it too.  

good luck and I agree with cynnieb4 that you should seek a second opinion if you feel you are not being taken care of.

~Faith
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Avatar_n_tn
Thanks for your opinions. Hashimoto's was definitely confirmed with antibody testing, so I know I have it. I just hate that I am not being treated. I am going to see a new doctor next week so hopefully I will get some answers!
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519035_tn?1348279373
just make sure you tell them how you are feeling. most doctors will say it will take its course. But if your not feeling well, you need to say so. Its a long process.  Also view stopthethyroidmadness.com good luck
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Avatar_f_tn
can hashimoto "come and go"?  i have felt this lump in my throat and then it appeared to have gone away, although i am not sure, anyway i have it again and go for biopsy on oct 1.  i can't believe my doc hasn't had blood work done.  does anyone who has this autoimmune disorder have a family hx of it?  i can't seem to function.  i believe that i am going to have to quit my job.  thanks for input.  i don't know if i have hashimoto or not, but just wanting some input.  
Susie
God Bless To All
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168348_tn?1379360675
WELCOME TO THE COMMUNITY!

C~
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168348_tn?1379360675
Let us know how the u/sound goes .. oftentimes the tech will give you an idea esp. if you tell them you know it's there already.  Mine has remained stable now for 2yrs .. 4.0mm.  Stable is a nice word :)

C~
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168348_tn?1379360675
Have you been to a Urologist?  A UTI that keeps coming back is probably not cleared up and has to be further investigated as to why it is coming back and where it is stemming from.  A UTI alone can account for many of your symptoms ,but I'm not a Dr, just a patient who gets recurring UTI's and knows what one left untreated or not fully treated can make you feel in the way of symtpoms .. for me, add joint pain to the list.

C~
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Avatar_n_tn
I am a 46 yr old female and I have had hypothyrodism since I was  the age of 16 yrs of age..Three years ago my doctor noticed my neck was enlarged and scheduled a Ultrasouns.I had several solid nodules on the right thyroid.I had a radioactive scan where you ingest a pill and then they x ray your neck to see if your thyroid is functioning.My was a cold scan,meaning my thyroid showed  no function at all even though my blood work up showed my tsh leves were normal..The next step was a needle biopsy (FNA) being that the nodules were solid and not functioning.The biopsy showed hurthel cells changes and warranted surgerical removal because they thought they were looking at Hurthcell carcinoma ..I under went a partial thyroidectomy, My right thyroid,4 lymph glands and my isthmus . The pathology results showed that I had Hashimotos and not cancer , thanks goodness..They did not remove my left thyroid lobe because it was still functioning and was free of nodules..
Just a note:When my surgeon did my partial thyroidectomy I asked him if Hashimotos could return and damaged the other lobe..
His answer: Its rare but I am not going to say that it cant happen because it can.
The changed my medicine from synthroid to levothyroxine in which I am dedicating take every morning.
However  last year my neck  begin to fill the same symptoms prior to the surgery I had..Main complaint was when I was sleeping , my neck felt tight like someone was choking me..My doctor  was amazed and sent me for another ultrasound to make sure.They found that I have two solid nodules on my left thyroid ..The biggest nodule is in the south pole of lobe which measures 8x7x5..They continue to scan me every 6 months and I just recenting had some extensive blood work done up on my immune system so I am just waiting for the results now.

Hashimotos is considered a autoimmune disease and your immune system attacks your thyroid until it stops functioning.Thyroid problems are hereditery and my  two sisters also have hypothyroidism as well.(just not hashimotos)

Goodluck*
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Avatar_f_tn
You MUST read the book "Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal?" by Dr. Datis Kharrazian.  Chapter 2 focuses on Hashimoto's, a disease which is very misunderstood, even by a lot of practicioners.  It is uncurable, but can be managed with lift style changes (gluten-free diet, etc).
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Avatar_m_tn
Sorry but that book doesn't stand up to serious scrutiny.  All it offers as evidence is anecdotal information, no scientific validation.
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500238_tn?1255134814
Old thread, but posting anyway for future viewers.  It is a mistake by any doctor to assume that a normal TSH in someone with antibodies to their thyroid means they don't need medication.  If you have elevated antibodies to your thyroid, your thyroid is in the process of being destroyed, regardless of your TSH level.  Since the most common form of thyroid disease is due to Hashimoto's thyroiditis, most people with hypo/hyper thyroid fall under this antibody picture.

Many physicians are completely unaware of the new ranges for TSH levels. The American Association of Clinical Endocrinologists (AACE) in 2003 recommended that doctors "consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0."  AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now.  

Even on thyroid medication, the preferred TSH level should be around 2.  Hashimoto's can result in normal TSH for years because the antibodies attack the peroxidase receptors which aid the body by helping it to use iodine.  Your thyroid may still make enough thyroid hormone in Hashimoto's but the body's ability to use it is being destroyed by these antibodies.  This means you can have normal TSH levels for years, yet you can begin having serious symptoms before labs begin to show a problem, hence the new ranges.  By the time TSH labs go out of these normal ranges, your thyroid has already been seriously affected.

If your physician is not up to date on the research in Hashimoto's disease, you need a new physician.  A small amount of synthroid, 50 mcg, for hypothyroid can be started without adverse affects and if symptoms begin to improve, your doctor can increase that amount until symptoms are much better and labs continue to show you to be within normal ranges, to avoid hyperthyroidism.  Hashimoto's is a serious disease and can fluctuate between hyper and hypo and should be monitored carefully.  It runs in families.  My father, mother, two sisters, myself and now my 22-year-old son have all been diagnosed.

My son was miserable for far too long before we found a physician who thought to test him for thyroid antibodies.  Thyroid peroxidase antibody testing and thyroglobulin antibody testing is as important if not more important than TSH levels.  If your doctor is not testing your antibody levels, they are failing one of the first basic steps in thyroid disease.  

Regardless of TSH levels, if you have elevated antibodies to your thyroid which are outside the normal range, your thyroid IS BEING DESTROYED.  Hashimoto's is autoimmune and a lifelong disease for which you must take medicine or suffer the consequences, which can include death and dementia.  It should never be taken lightly.  More physicians and patients need to be aware of these new ranges and the seriousness of Hashimoto's disease.
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Avatar_m_tn
Good info for members to remember.  I agree with your post except for your statement that "Even on thyroid medication, the preferred TSH level should be around 2."  TSH is a pituitary hormone that cannot be shown to correlate with either Free T3 or Free T4, much less with symptoms, which are most important.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms without being constrained by resultant TSH levels.  I say this because hypo patients frequently find that when taking adequate meds to relieve symptoms, their TSH is suppressed below the range.  That does not mean they are hyperthyroid, unless they actually have hyper symptoms, due to excessive medication.  Therefore, treatment needs to be clinical, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, not by targeting a value for TSH.  
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5341336_tn?1366656055
hi,
i am new  to this community,but i have leant alot already,i was diagonaised with hypothyroidism 2 yrs ago
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Avatar_m_tn
What med and dosage do they have you on?  Also, are you still having any hypothyroid symptoms?  If so, please post your thyroid related test results and reference ranges and members will be glad to assess the adequacy of your testing and treatment.
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Avatar_f_tn
Thank you so much for this info! I've just recently been diagnosed with hashimoto.  It took 9 dr's and 14 months to get that diagnosis.  My problem now is that I can't get any of the dr's to treat me since my TSH, T3 and T4 counts are 'normal'.  I have pretty severe muscle and joint pain, extreme exhaustion, anxiety, etc.   I've printed out your post and hoping to find a dr that will at least look into this issue further. Thanks again!
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Avatar_f_tn
Thanks for this comment. I appreciate all you've added to this discussion.  
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Avatar_f_tn
I have hashimotos i was just told but i forget to take my medication, i hate takeing what is the worse that can happen.
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Avatar_m_tn
Hashi's is caused by the autoimmune system producing antibodies that attack your thyroid gland until, after an extended period, the gland is destroyed.  Along the path to that destruction, output of thyroid hormone is diminished, requiring increasing amounts of thyroid medication to offset the loss of natural thyroid hormone.

If you do not take the medication, you will incur hypothyroid symptoms, that will continue to get worse and worse.  Believe me you do not want to take that direction.  Have a look at this and you will see what I mean
  

"Myxedema, physiological reaction to lack of sufficient thyroid hormone (hypothyroidism) in the adult. It can be brought about by removal of the thyroid for any cause, by a cessation of function of the gland, or simply by glandular atrophy.

The changes come on gradually: enlarged tongue; thickened skin with underlying fluid causing puffiness, particularly in the face around the eyelids and in the hands; drowsiness; apathy; sensitivity to cold; failure to menstruate (amenorrhea) or excessive menstrual bleeding (menorrhagia); cardiac enlargement; and lowering of the basal metabolic rate. The outlook for recovery, when treatment is with dessicated thyroid, is excellent. Therapy must be maintained permanently."

The following info may not mean too much to you right now, but believe me you need to keep it in mind as you proceed to getting adequately tested and treated for your Hashi's.  You will find that there are very few good thyroid doctors, but that is what you need to locate, so remember the following and find out if any doctor you see is willing to treat clinically, as described below.

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate
criterion for dose adjustment must always be the clinical response of the patient."

http://hormonerestoration.com/files/ThyroidPMD.pdf
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