Fluctuating TSH with Goiter

I am a 36 year old female with a history of wildly fluctuating thyroid results, goiter and family history of thyroid conditions. I am otherwise in very good health.

At 17, doctors started noticing my enlarged thyroid, but did not pursue it. At 23, as I became more educated about my symptoms, I was sent to a radiology lab and diagnosed with a multinodular goiter. I was told that my test results were normal, and I had no function problem.

Over the years my symptoms have been periodic, and have ranged from barely noticible to extremely bad. Some of these symptoms include difficulty concentrating, poor memory, extreme fatigue, dry/itchy skin, periodic weight gain, low libido, low body temp (97), 2 miscarriages.

A few months after the birth of my first child, my symptoms were extremely bad. Naturally my doctor suspected post-partum depression, and suggested prozac. When my bloodwork came back I was diagnosed with hypothyroidism with a TSH of almost 8. I was then put on synthriod.

Shortly after, I moved to another state, tested by my new doctor, and told my function was normal. The medication was stopped. Again antidepressants were prescribed, which even in low doses make me anxious and short-tempered.

During my second pregnancy my tsh was 2.9, and I had no thyroid symptoms. A few months later I was again having major symptoms. One blood test showed tsh of 5.79 with a free t4 of 1.0  - I was again told that my results did not warrant medication, and I was again prescribed antidepressants.

At this point I gave up on pursuing treatment. The symptoms lifted after about 2 years. During the time which I felt good, one test showed a tsh as low as 2.39

-I have recently begun experiencing symptoms again (increasing over the past 9 months or so), and I very hesitant to spend my time and money to get tested again, because of the fear that it will be dismissed again.

-What could be causing my levels to vary so much (as low as 2.39 / as high as almost 8)?

-I really feel like I have lost many years of my life (or quality of life). Is it really expected that I should not get treatment, because I sometimes have normal levels. Isn't the purpose of treatment to regulate that?

[GravesLady]

Many reasons for level to fluctuate.  Illness, stress, diet, differences between Labs, Lab error, invirement, extreme weather change, medications - even aspirin, and the list goes on.

Thyroid is going to do what it wants to do and meds. do not regulate this.  That is why treated patients go in for testing on regular bases.

Your level of up to 8 is considered in the normal range and moderately high serum TSH is up to 10 mU/l, as far as a diagnose for treatment.

Thyroid symptoms are so non-specific.  In other words, a lot of other health conditions have the same symptoms as thyroid, it is very difficult to distinguish where the symptoms are coming from or which health conditions are the cause.

None of the thyroid hormone medications or drugs are a 100 percent cure-all for symptoms. You might have to treat each symptom separately from each other and from thyroid.

Or you could travel the country side in search of a doctor who will treat you - I am sure that they are out there, some place.

Good Luck!

[kitty9309]

Your levels may fluctuate if you have autoimmune hypothyroidism. Patient's with Hashimoto's may notice up and down levels as the gland tries to keep up thyroid hormone production.
Ask dr. to test thyroid antibody levels. If positive, this w/ high TSH is Hashimoto's.
A TSH of 8 is not in the normal range. The normal range in most labs does not go above 5.5.
Here a some articles to read regarding the reference range. One is current as of 8/2006.

http://www.aacc.org/AACC/events/expert_access/2006/TSHRange/

http://www.aacc.org/AACC/events/expert_access/2006/TSHRange/qanda.htm

http://www.currentpsychiatry.com/pdf/0511/0511CP_Article4.pdf

http://jcem.endojournals.org/cgi/content/full/90/9/5483

Educate yourself .Your symptoms are textbook and hypothyroidism has many seemingly unrelated symptoms that can be treated as one with thyroid medication if the thyroid is to blame.

[kitty9309]

TSH between 5-10 and goiter warrents treatment according to guidelines.
Forgot you mentioned the goiter.

[GravesLady]

Well that was rude, as if you are not educating yourself by being here.

A person does not have to autoimmune for levels to fluctuate, for verious reasons as I mentioned above.

AACE - American Association of Clinical Endocrinologists  2006 amended guidelines.
US Government 2004 Guidelines
UK 2006 Guidelines,  
American Thyroid Association
The Endocrine Society -  Albert Einstein College of Medicine, New York. September 23, 2004 .  
The Johns Hopkins University School of Medicine and
Sinai Hospital of Baltimore, David S. Cooper April 20, 2004
"(the panel concluded that the upper limit of normal for serum TSH should remain at 4·5 or 5 mU/l, and not be lowered to 3 or 3·5 mU/l as had been advocated by some professional organizations (Baloch et al., 2003))". Medscape Today
Thyyro Link, Merck KGaA, Darmstadt, Germany 02.02.2005
American Family Physician  May 1, 2005
The National Academy of Clinical Biochemistry hypothyroid 2006 guidelines

quote - TSH 2.5 - 4.5: May be due to minor technical problems in the TSH assay, circulating abnormal TSH isoforms, or heterophilic antibodies; normal individuals with serum TSH concentrations in this range would be misidentified as having hypothyroidism

TSH of 4.5 to 10:  No routine levothyroxine treatment for patients with TSH levels between 4.5 and 10 mIU/L, but thyroid function tests should be repeated at 6- to 12-month intervals to monitor for improvement or worsening in TSH level. Early levothyroxine therapy does not alter the natural history of the disease,.........

TSH Higher Than 10 mIU/L Hypothyroidism Levothyroxine therapy is reasonable.

Data do not confirm clear-cut benefits for early therapy compared with treatment when symptoms or overt hypothyroidism develop. - unquote

Anti-thyroid peroxidase (TPO) antibodies:
The evidence was insufficient to recommend either for or against routine measurement of anti-thyroid peroxidase (TPO) antibodies in patients with subclinical hypothyroidism.  However, the presents of the antibody predicts a higher risk of developing overt hypothyroidism, as well as autoimmune thyroid.
Still, antibody presence or absence does not change the diagnosis of subclinical hypothyroidism (which is based on serum TSH measurements) or the expected efficacy of treatment. US Government Guidlines

Thyroid antibodies may remain positive for years, and do not provide an indication of whether the person has normal or abnormal thyroid function. Furthermore, some patients with Hashimoto's disease may have negative levels of circulating antibodies, and conversely, patients with positive levels of thyroid antibodies may never develop thyroid disease during their lifetime. mythyroid

People with chronic thyroiditis,other thyroid diseases, other autoimmune disorders such as Sjögren syndrome, lupus, rheumatoid arthritis, and pernicious anemia  and people may have  no evidence of disease, are sometimes positive for antibodies. Therefore, thyroid levels are the prevailing diagnose. medicinenet

Thyroid antibodies are not part of routine testing.
They are usually only indicated when a patient has an enlarged thyroid or symptoms suggesting thyroid dysfunction. Routine screening of the thyroid is usually accomplished using thyroid tests such as TSH and T4. labtestsonline

Currently, there is no treatment capable of stopping the autoimmune process leading to Hashimoto's thyroiditis.
Presence of these antibodies is not enough for a diagnosis of Hashimoto’s thyroiditis, since a certain percent of women in the population have these antibodies.
Johns Hopkins Autoimmune Disease Research Center

"The symptoms of both hyperthyroidism and hypothyroidism are non-specific and can be mimicked by other conditions. Thus the practice of prescribing thyroid treatment on a clinical basis alone without biochemical confirmation carries potential risks". Per new england journal of medicine  

"symptoms that seem like low thyroid actually be a result of another low-energy disease.
There are many additional causes for symptoms, each requiring a different treatment.
Also a low thyroid can worsen any other illness, and the opposite is also true. To achieve lasting improvement you may have to treat more than one condition at a time. It is important that you obtain a full and complete diagnosis and treat in the appropriate order all conditions that may be contributing to your health issue(s)".  Thyroid Power - mamashealth

Sorry for the confusion and any misunderstandings.

[jt1971]

Thank you for the articles. I will be passing one on to the psychiatrist whom I started seeing recently to try to help with my "depression". I don't recall him ever asking about my thryoid.

I'm only recently hearing about thyroid antibody tests. I don't think anyone has ever tested my antibodies. Any ideas why doctors don't normally test?

[kitty9309]

Educate yourself just means to not only listen to the responses here, but to also do your own research. It wasn't meant to be rude- as the tone for the rest of my response was not rude, but helpful. I hope you didn't take it that way. I was just tring to be to the point.
See my posted question on TSH reference range for the supposed amended 2006 guidelines for more information.

[jt1971]

Please note that I didn't take your comments as rude. I sincerely appreciate your input.

I agree that it is important to educate myself. Maybe I wouldn't have been living with this for almost 20 years had I better educated myself.

[GravesLady]

If you need any links, message me.

[kitty9309]

I'm glad you didn't misunderstand my words.
I hope you feel better soon.

[kitty9309]

I missed the post above about the articles. That is great that you will pass it on. I just found out on the rules to this forum that I wasn't supposed to reference those websites. If you need anything else, send me a message.
I read a question and answer session on the AACE website with Carol Spencer and she says doctors just need to be better educated on thyroid disease. Most of the time, patients go to their primary care doc who has to deal with many other conditions, and may not be up to date on all of them. That's why we sometimes need to go to a specialist.