Aa
Aa
A
A
A
Close
Avatar universal

Dr. Mark, I have CFS symptoms, with Hashimoto's well treated.

Dr. Mark, I'm a male Hashimoto's patient in my 40s but with my TSH from combo t-4/t-3 treatment, kept persistantly between 0.5 to 1.0, I still have symptoms of those listed for CFS and emotions are not the cause. Most possibilities have been ruled out. Negative blood tests: diabetes, RA, Adrenal, gout, anemias, ANAs, testosterone, ESRs, TIBC, B-12, ferritin, folic acid, serum iron, EKG-stress test.
Adrenal function is normal but cortical is just inside the low normal. I do have neurally mediated hypotension and extreme chemical sensitivities, low tolerance for physical/mental exertion, intermitant joint pain.
My last two Chem-26 tests, did show elevated ALT/SGT levels, just above normal ranges and both showed my salt level at borderline high and this last one also flagged my chloride level high. These are apparently electrolyte imbalances and possibly something to do with liver function. Could these be causing my CFS symtoms? Can CFS be comorbid with Hashimoto's Disease? Thank you in advance for your reply, I also welcome input from other patients.
16 Responses
Sort by: Helpful Oldest Newest
Avatar universal
It is also wonderful to hear of a endo who is willing to use desiccated thyroid extract.  Many thyroid patients have to travel long distances (or even self medicate and monitor their own bloodwork) because of the refusal of so many doctors to use this product.  Others who have successfully taken it for years are fired by their new physicians when they refuse to change to a synthetic.  I do not know how so many misconceptions have arisen about this product(although i would suspect pharm. reps), but my personal observation is that every thyroid patient that has tried both, prefers the desiccated thyroid extract.  So I am glad you are offering this to your patients.
Helpful - 0
Avatar universal
it would be interesting to see a study comparing "relief from hypo symptoms" between those monitored by Free levels vs. TSH dosing.  
Of course it would have been nice to have orginally had a study indicating whether dosing by TSH relieved hypo symptoms as well as the decades old medical practice of treating by symptoms.  
But then I would be wanting to have also seen the study showing synthetics were superior treatment in symptom relief to desiccated thyroid extract.
Helpful - 0
97953 tn?1440865392
MEDICAL PROFESSIONAL
the patient with pituitary disease is followed with peripheral levels (t4/t3) - that would be an exception to the statement -- however this is relatively uncommon.

I have used dessicated thyroid with success in patients and have suggested to several patients to change from l-t4 to a dessicated product due to persistent symptoms.  Doesn't always help, but usually worth a try to determine which symptoms may be thyroid related.
Helpful - 0
Avatar universal
I have a question regarding your statement:
Following the free T3 in a patient on combo t4/t3 is not a reliable way to treat a patient.

If you have someone who has known pituitary dysfunction, such as in central hypothyroidism, how is the treatment of the hypothyroidism monitored?
Helpful - 0
Avatar universal
I do believe that "abstracts" were also included here:
http://www.altsupportthyroid.org/tsh/tshmedrefs5.php

as well as text.  And of course I do consider the opinions of famous thyroid physicians important since they have dedicated their life to the successful treatment of thyroid dysfunction. An especially when their protocols have made for happy hypo-free patients. Those are physicians I want to study and find out what they were/are doing right.

I did not mean to imply specifically that one particular medication was best for everyone.  I do mean to imply that more thyroid hormones than the storage one has been shown to be important.  Therefore it should be no surprise that many hypo folks do better when they have all those thyroid hormones.  I have heard miraculous stories of how lives were changed when they changed medications, and I think this is worthy of note.

I'm sure that you're familiar with both the studies and literature indicating the importance of T3 in regards to cognition and mood.  In addtion, T2 has also shown to be active and to be biologically active.  So I think it is important that thyroid patients have access to information about both synthetic T3 and desiccated thyroid extract products.  Especially since desiccated thyroid extract has calcitonin to promote good bones.  It is heartening to hear stories of women whose bone density has actually increased on this type of medication.  

I suppose one reason I have heard so many horror stories about T4 meds from women is that perhaps they were hypos who were unable to convert because they lacked that enzyme (as hypos often do).  However, I do not doubt that it is possible that a "little bit hypo" might still be able to convert and thus a T4 med might be satisfactory.  But I can in all honesty say that I have never come across a person who has been on a T4 med for over 10 years who isn't also on medications for symptoms that appear to be totally hypo related.  I have a friend like that on a T4 med and she says she's doing just fine on it.  But she's taking a cholesterol medication and high blood pressure medication.  So..is she really fine? Or does she have hypo symptoms unresolved?

So, I hope you are not like so many endos who refuse to accept the efficacy of desiccated thyroid extract.  It really did work well for over a hundred years...and from all accounts that I've heard, still works very well today.

Helpful - 0
97953 tn?1440865392
MEDICAL PROFESSIONAL
Actually, the references you cited were opinions and not original studies.  That being said, the osteoporosis issue remains up in the air but there is good data that keeping the TSH <0.1 increases a-fib by 2-4 fold - granted this is more likely in the elderly, but I have personally seen it in women in their 40's.  

Generalizing that all hypothyroid patients do better on one medication over another is over-simplifying this complicated disease.  There are patients who do better on T4/T3 combo therapy such as the dessicated hormones -- I see this everyday -- but many do well on synthetic l-t4.  

Careful study of medical science would lead you to the conclusion that everyone is different and that generalizations may be perilous -- which, ironically, is what you profess.  That is, we should pay attention to the individual patient as well as the objective labs -- any good endocrinologist should do this but unfortunately this is not practiced on a day-to-day basis.

I am happy that you have found the right thyroid hormone treatment for you -- but realize it's not for everyone....
Helpful - 0
Avatar universal
I cited this for you in another thread where you requested it.  
Helpful - 0
97953 tn?1440865392
MEDICAL PROFESSIONAL
PLEASE CITE RERENCES THAT REFUTE TSH YET FOLLOW PATIENTS FOR AT LEAST 5 YEARS TO DOCUMENT THAT A PERSISTENTLY LOW TSH (IN CONTRAST TO MY GOAL OF 0.5-1.5) DOES NOT CAUSE HEART PROBLEMS AND OSTEOPOROSIS.
Helpful - 0
Avatar universal
Thanks so much for the search recommendation, I will most definately check that subject out. I just also read that Hepatitis C is more common with us Hashi patients as well! I did not know this and have never been told about the prevalence of other diseases like these and other autoimmune diseases with thyroid patients. Instead, Dr.s try to make you believe you are having emotional issues. I was told this before tests showing I have Hahimotos. The Dr. insisted I had anxiety & depression and placed me on Paxil. I kept getting worse and kept requestion tests, till I got them.
Doodlebug1, my TSH got down to .006 once and I never had hyper symptoms from it, so I believe for sure there is something important in what you are saying! On the other hand my symptoms didn't improve either which is why I believe there may be a co-existant illness, so will try to rule out or confirm whether there is.
Thanks All, I'll keep reading on here and occassional imputting.
Helpful - 0
Avatar universal
Thanks for your replies, I agree with you. Imentioned to the Dr., that my TSH is kept between 0.5 to 1.0 but actually, it has been staying down at about 0.3. I wasn't trying to be inacurate with the Doc, but have had fluctuations up to about 0.7, so wanted to use 'under' 1.0 as kind of a cut-off. The 0.3 that I stay slightly under most of the time, is slightly below the new TSH range that came out recently.
As you said I might have other issues, the elevated liver enzyme count, apparently has stayed above normal for over two years. I feel this means something and plan to get checked for possible hep. virus. I just found info on Hep-C and this one can do, just what I've been going through and elevate the ALT/SGPT, just as mine has been.
I appreciate you guys for being so studied, I get a lot of good info, just by reading on here.
Thank you again.
Helpful - 0
Avatar universal
There have also been multiple, well-designed studies that refute the use of TSH as a diagnostic tool once you are on thyroid replacement. The basic explanation in lay terms is as follows: In a normal situation, your thyroid puts out a little bit of hormone continuously during the day, and your pituitary checks it continuously and tells the thyroid when it needs to make more or less (TSH = Thyroid Stimulating Hormone). But, when you're on thyroid replacement, you're dumping a whole lot of thyroid into the system at one time. The pituitary senses it and drops the TSH level, trying to keep the thyroid from producing more. So, when you're on replacement, your TSH will logically be very low, even if you are symptom-free.
I think this makes sense, and here's why: After RAI, I had a lot of hypo symptoms, and the endo adjusted my Synthroid only until the TSH was in range. After that, with the SAME symptoms still plaguing me, all of a sudden it wasn't my thyroid any more. In fact, the endo tried to tell me I needed antidepressants, pain and cholesterol meds and I needed to diet and exercise, which I was already doing and it wasn't working!
Helpful - 0
97953 tn?1440865392
MEDICAL PROFESSIONAL
Hepatitis can be chronic.

Following the free T3 in a patient on combo t4/t3 is not a reliable way to treat a patient.  It can be done if the level is checked about 3 hours after ingestion of t3 -- however the TSH is a better reflection of the thyroid balance in the body -- proven in multiple well-designed studies.
Helpful - 0
Avatar universal
Thanks for the advice. Yes I have had my free t-3 checked recently, it was # 3.5, range- 2.3 tp 4.2 and with this reading, my dose was increased a little and not re-checked after that, simply because it was close to optimal before the increased med dose.
I wish it were as simple as dose needs but I can tell by the intesnsity of this thing, it is something else. I probably need to do as thr Dr, said and check for hepatitis.
Dr. Mark if you see this and can comment, can hepatatitis stay in your system for years like this??
Helpful - 0
97953 tn?1440865392
MEDICAL PROFESSIONAL
Your labs are pretty close to normal - the increased eos are likely okay but could be allergies, adrenal glands or other immune disease -- BUT only if really elevated (ie greater than 800 for an absolute eosinophil count)
Helpful - 0
Avatar universal
I also want to mention I do not drink alcohol and I do not take any medication other than thyroid hormones. The first test I had done showing elevated ALT/SGPT, was in 2003, @ 66, normal range- 33 to 65.  When I got a second one done this month, 2005, it was still elevated @ 46, normal range-<45.
My elevated Chloride this recent test was @ 110, normal range- 98 to 109. Sodium was @ 146, normal range- 136 to 146.
I have also had a slightly low WBC and elevated eos, on my last three CBCs.  Don't know if there's a connection to my symptoms??
Helpful - 0
97953 tn?1440865392
MEDICAL PROFESSIONAL
The Hashimoto's appears to be well-treated.  Mild "salt" level abnormalities (electrolyte imbalances) usually don't cause significant chronic fatigue.  From an endocrine standpoint - the other tests to check would be ACTH stimulation test to definitively exclude adrenal insufficiency and an IGF-1 to screen for growth hormone deficiency.

Hashimoto patients tend to have chronic fatigue but usually this is treatable with aggressive treatment as you are undergoing.  Testing for hepatitis is important with the liver function abnormalities.

Some patients with neurogenic hypotension have other neurologic diseases and perhaps a complete neuro eval is indicated.

CFS is a descripition, not a disease entity, in my opinion.
Helpful - 0

You are reading content posted in the Thyroid Cancer / Nodules & Hyperthyroidism Forum

Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.