Unfortunately a misdiagnosis can happen in the management of hypothyroidism and other thyroid disorders. If you go to a doctor with hypothyroid symptoms, you may be given replacement hormones without first determining what’s causing your thyroid issues.
Or, if you have hypothyroid symptoms but your lab tests are normal, your doctor may not realize you’re experiencing thyroid issues in the first place. You may even receive treatment or medication to deal with the symptoms you’re experiencing—like an antidepressant to address depressive symptoms—but you won’t receive anything that will help your thyroid disorder.
The problem with this approach is that thyroid physiology is complex.
The production, conversion, and uptake of thyroid hormone in the body involves several steps. A malfunction in any of these steps can cause hypothyroid symptoms, but may not show up on standard lab tests.
All cases of hypothyroidism do not share the same cause—and, as you might guess, they require different treatments.
In this article, I’ll present five patterns of thyroid dysfunction that may not show up on standard lab tests. If you have one of these patterns, your thyroid isn’t functioning properly and you will have symptoms. But depending on the tests your doctor runs, you may not get a diagnosis of hypothyroidism; and, if that’s the case, you won’t receive the treatment you need.
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A standard thyroid panel usually includes TSH and T4 only (while some panels will also look at free T3, free T4, and check for thyroid antibodies). The ranges for these markers vary from lab to lab, which is one of two main problems with standard lab ranges. The other problem is that lab ranges are not based on research that tells us what a healthy range might be, but on a bell curve of values obtained from people who come to the labs for testing.
Now, follow me on this. Who goes to labs to get tested? Sick people. If a lab creates its “normal” range based on test results from sick people, is that really a normal range? Does that tell us anything about what the range should be for health? (For more on the problems with standard lab ranges, watch this great presentation by Dr. Bryan Walsh)
Are you experiencing hypothyroidism symptoms even though your lab work is normal? You may still have hypothyroidism, though it may not show up on standard labs. Check out this article for more. #functionalmedicine #chriskresser
The Five Thyroid Patterns
1. Hypothyroidism Caused by Pituitary Dysfunction
This pattern is caused by elevated cortisol, which is in turn caused by active infection, blood sugar imbalances, chronic stress, pregnancy, hypoglycemia, or insulin resistance. (1) These stressors fatigue the pituitary gland at the base of the brain so that it can no longer signal the thyroid to release enough thyroid hormone. There may be nothing wrong with the thyroid gland itself. The pituitary isn’t sending it the right messages.
With this pattern, you’ll have hypothyroid symptoms and a TSH below the functional range (1.8 – 3.0) but within the standard range (0.5 – 5.0). The T4 will be low in the functional range (and possibly the lab range too).
2. Under-Conversion of T4 to T3
T4 is the inactive form of thyroid hormone. It must be converted to T3 before the body can use it. More than 90 percent of thyroid hormone produced is T4.
This common pattern is caused by inflammation and elevated cortisol levels. T4 to T3 conversion happens in cell membranes. Inflammatory cytokines damage cell membranes and impair the body’s ability to convert T4 to T3. (2) High cortisol also suppresses the conversion of T4 to T3. (3)
With this pattern you’ll have hypothyroid symptoms, but your TSH and T4 will be normal. If you have your T3 tested, which it rarely is in conventional settings, it will be low.
3. Hypothyroidism Caused by Elevated TBG
Thyroid binding globulin (TBG) is the protein that transports thyroid hormone through the blood. When thyroid hormone is bound to TBG, it is inactive and unavailable to the tissues. When TBG levels are high, levels of unbound (free) thyroid hormone will be low, leading to hypothyroid symptoms. (4)
With this pattern, TSH and T4 will be normal. If tested, T3 will be low, and T3 uptake and TBG will be high.
Elevated TBG is caused by high estrogen levels, which are often often associated with birth control pills or estrogen replacement (i.e. Premarin or estrogen creams). To treat this pattern, excess estrogen must be cleared from the body.
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4. Hypothyroidism Caused by Decreased TBG
This is the mirror image of the pattern above. When TBG levels are low, levels of free thyroid hormone will be high. You might think this would cause hyperthyroid symptoms. But too much free thyroid hormone in the bloodstream causes the cells to develop resistance to it. So, even though there’s more than enough thyroid hormone, the cells can’t use it and you’ll have hypothyroid—not hyperthyroid—symptoms.
With this pattern, TSH and T4 will be normal. If tested, T3 will be high, and T3 uptake and TBG will be low.
Decreased TBG is caused by high testosterone levels. (5) In women, it is commonly associated with PCOS and insulin resistance. Reversing insulin resistance and restoring blood sugar balance is the key to treating this pattern.
5. Thyroid Resistance
In this pattern, both the thyroid and pituitary glands are functioning normally, but the hormones aren’t getting into the cells where they’re needed. This causes hypothyroid symptoms.
Note that all lab test markers will be normal in this pattern, because we don’t have a way to test the function of cellular receptors directly.
Thyroid resistance is usually caused by chronic stress and high cortisol levels. It can also be caused by high homocysteine and genetic factors. (6)
Thyroid Treatment Depends on the Right Diagnosis
The five patterns above are only a partial list. Several others also cause hypothyroid symptoms and don’t show up on standard lab tests. If you have hypothyroid symptoms, but your lab tests are normal, it’s likely you have one of them.
Not only do these patterns fail to show up on standard lab work, they don’t respond well to conventional thyroid hormone replacement. If your body can’t convert T4 to T3, or you have too much thyroid binding protein, or your cells are resistant, it doesn’t matter how much T4 you take; you won’t be able to use it.
Unfortunately, if you have one of these patterns and tell your doctor your medication isn’t working, all too often the doctor’s response is to simply increase the dose. When that doesn’t work, the doctor increases it yet again.
As I said at the beginning of this article, the key to a successful treatment is an accurate diagnosis. Without understanding precisely what’s causing the problem, you may end up with a treatment that isn’t well-suited to your specific situation.
The good news is that, once the correct diagnosis is made, patients respond very well to treatment.
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I was told by my doctor that I have Hashimotos and that from my test results my T4 isnt converting enough T3. Im on a combination of both T3 AND T4 but since had to get off medication due to the Low Dose Naltraxone Im on for my Urticaria. The LDN is also suppose to help Hashimotos and is suggested that you go off your thyroid meds to avoid hyperthyroid symptoms. Now that Im into my second week of the using this new medicine im more tired than normal. Do you he any info on LDN?
Hi im desperate for help!I I started experiencing unexplained weight gain over a year ago,Ive always been healthy and active.I visited the gym regularly and would run 4 miles about 3 to 4 times a week.I eat healthy and for some reason have gained a stone,which is impossible to lose.having to eat low calorie diet to try to maintain weight but if I was too eat 3 normal square meals a day i put on 4/6 pounds overnight,I weigh myself daily!I started getting dizzy spells last year with pins and needles in my hands and wrists,also around this time my memory started getting worse and worse.I visited docs and she tested tsh level which was 0.7 and tpo was 9.8 she said these were perfect and sent me on my way.Pins and needles disapeared but memory remains awful,i feel foggy all the time and cant remember putting things down a second after ive done it!Four weeks ago i developed an irregular hearbeat,went to doctors and they said my cholestrol was high it was 5,referring me to cardiology at hospital.I am convinced it is to do with my thyroid and worry about heart damage.Feel tired,shaky most days and totally no sex drive for last year(poor husband!)Any ideas I would be most grateful for.thankyou!
I know how you are feeling. My symptoms started back in November. I don’t know your age but I am 45 and am entering menopause . My thyroid is a bit under active and I gained weight. I am having all my hormone levels tested and it shows my adrenal gland is low and my testosterone an progesterone is also low. I have all the same symptoms as you. I have went on a 2 hr a day workout and very clean diet. No sugar or caffeine and off bad carbs. I lost 20 lbs and feel better but not 100%. I have a dr. Who does bio- identical drugs. I can’t use the progesterone because I am one of the rare people who react to the cream but I am hopeful I will find my treatment for the hormones. As for thyroid, I have Graves’ disease and through my life it has caused trouble and now I am a bit under active . I think going into menopause throws the thyroid out so you might want to check into that . Hope this helps
Hi Chris,
I realize you may not be able to respond directly to me, but I’ll try nevertheless because I’m frustrated with my current health situation. I am a 30-year-old male who was diagnosed with hypothyroidism at age 17. Ever since, I have had a steady dose of Synthroid which has helped stabilize my thyroid hormone levels. However, I still have many autoimmune symptoms with no diagnosed cause. My skin is the worst part – I get lesions and deep sores all over my body which don’t go away and which cause me immense pain (not to mention loads of shame). I have joint issues, general body pain and stiffness, abdominal pain/cramping/constipation/diarrhea, dry eyes/mouth/skin, constant fatigue, trouble concentrating, irritability/depression/anxiety, and trouble getting a good night’s sleep.
I have no family history of autoimmune or thyroid diseases. I exercise regularly and eat a balanced, low-fat, low-salt diet. There are no structural problems with my organs which would suggest a problem with them. I am neither coeliac nor lactose intolerant. My blood work is always impeccable, so doctors never go further in investigating the causes of my problems.
If there is any suggestion you can offer in terms of how I can go about getting properly diagnosed/treated, it would be very much appreciated. I’m at the end of my rope!
Thank you.
May I add endrocronologist 2 of them say she is fine all she has to do is eat well to lose the weight . She has been eating very well now for 2 yrs vegetables , fruits all organic even almond milk and nothing. No weight loss no changes in symptoms.
bottom line what to do if my daughters that is 15 has been tested for Thyroid , TSH and according to her pediatrician all thyroid test have been done and keeps coming out normal. However my daughter is overweight has tried every diet , excercise nothing works. She also has trouble sleeping, has anxiety, depression and has loss of hair. Desperite please help! What do u recommend when everything comes out normal but these symptoms dont go away. no family history either.
Hello Chris,
I’m sure your super busy. My question if it’s possible at all to answer. I was tested for thyroid and my results were TSH.49 . freet4 .73 and freeT3 2.19. My symptoms are super cold,10lb weight loss that I’m happy about, rapid heart rate although in the normal range even though it is faster then it has ever been. Sleep issues, waking up, up for hours tired in the morning. I scared to go on medication because I model,normal size not skinny, if I gain weight I can miss out on lots of jobs. My freet3 was considered low. I am on birth control ortho novum 777 and my diet is not very good although I’m improving. I eat alot of suger but am thin because I run 5 miles a day. Any thoughts? I’m more then happy to switch drs if i need to as i am in the sf/sj area:)
Hi Chris, I wonder if you could shed any light on this, I had my levels checked for my annual test while on levothyroxine and my TSH is 0.02 so the doctor dropped my meds. I agree it’s very low but so is my FT4 and FT3 – both bottom end of range. Do you know what could cause the TSH to become so low without FT4 going high? I have to go back for follow up bloods and if the FT4 and FT3 go lower still as I suspect I’d like to know what tests to ask for next as I got the impression the doctor didn’t really know why the result was like this but just wanted the TSH to come back up. She actually asked me if I had been taking my medication.
I have classic hypothryroid symptoms but test results of TSH 1.44, FT4 1.34 and FT3 3.1. I am so sick of feeling fatigued, of my thinning hair, my growing intolerence for cold, my overall sluggish feeling both physically and mentally, low body temperature and so forth. How do I need to approach a doctor about these symptoms? Any help is appreciated
I feel the same way as you, Susan. Almost identical test results. I have every single symptom of thyroid issues but no doctor will help me. I am at a complete loss as to how to find help. I’ve lost my teaching career over this.
HOW do we get doctors to help us? I even paid very large sums of money out of pocket to see two Integrative doctors here in Florida, but neither of them think it’s thyroid since my labs are normal. I know they are wrong. I even had a thyroid scan and it showed that I have an inhomogeneous thyroid, but nothing was explained as to what that is. I also have TPO antibodies, but was told they were low enough( below range ) and not an issue.
Symptoms: Extreme fatigue/lethargy, hair loss/brittle/dry, super dry skin, dandruff, cold intolerance, menstrual problems, low ferritin that is difficult to raise, high cholesterol, weight gain and near impossible to lose even 1 pound unless I just stop eating, scalloped tongue, abdominal pain ( lost my gallbladder last summer ), brain fog, depression ( who wouldn’t be?), gritty eyes, spine pain, sore knees, sore heels, ridged nails, puffy/frumpy face.
But I always just get antidepressants thrown at me and told I’m just aging. I’m 45 and my health fell apart when I was 37. I have very little quality of life because of this.
Chris….please…help 🙁
I’d suggest checking out the Recovering with T3 book and FB groups. Also stopthethyroidmadness.com. You can get good doctor referrals from these places. It sounds like you may be a person that does well on T3 only rather than combination therapy.
OMG pam i have the same problems the doctors wont listen..the thyroid doctor i went to asked me if i was depressed..I was at my wits end to begin with and after i get done explaining to him how i feel he asked me that..OMG i am at a loss to i dont know where to turn..all my test come back normal and i still feel like crap…I stopped going to the doctor in 2010 begining 2011 because they werent listening ..so i figured it was me but 2 years have past and i still feel like crap so i thought i would give it another try..and low and behold they are doing the same thing they did two before..so now i am at that same wall i was back then…so if you have any answers please reply back to me…oh yea another doctor told me to read a Jillian Millian book OMG i wanted to scream..i am a LIFE TIME weight watchers i know what to eat how much blah blah blah…
I also feel exactly the same as you and everything you have discribed happened to me.
Things got so bad that I had to seek private medical advice. What I will suggest to you is to go onto the thyroid uk website and on their they recommend a particular Dr – he has written a wonderfal book which will lift your spirits, you can go and see him or just work through his book.
I really know what it’s like, I was 29 when things fell apart for me and now at 32 I am still very poorly – but I seem to be an exceptional case sadly, but I won’t give in – their is hope out their, people do get better, it just takes along time and getting the right medication, as we all respond in a different way.
Good Luck
Debbie
Look up Wilsons Temperature Syndrome if all your labs are normal but your body temperature is chronically low.
Not to sound like a broken record, as I had the same recommendations to another poster-
Please check out parathyroid.com. I had these symptoms, had been pretty stable on thyroid meds for over 20 years when they started…dr. Norman removed a small benign parathyroid adenoma and now I feel great!
It was a gradual decline that I wanted to attribute other things , such as oncoming menopause, thyroid meds, Etc etc… The insomnia, brain fog, apathy, and stomach pains were new onset and told me it was something new. Oh! I also had bone pains in my hip at night. No identifiable reason , until the parathyroid tumor diagnosis.
For last 3.5 yrs since my daughter I’ve been breaking out with hives on my legs. They come and go and are worse in the winter. My family doctor has sent me to a Allergist (that I would NEVER recommend) and he ran some blood tests and put me on allergy shots. The hives never went away. Also since my daughter was born I’ve not been able to lose the 40lbs I gained during pregrancy even with diet and excercise. Now I found out that I borderline diabetic and suffering from Hypertension. I did have my thyroid checked a few yrs back but it came back normal. My OB/GYN also said my thyroid felt very off the other day. I’m waiting for the test results and it comes back normal again what should be my next step? I should mention that I’m only 32 yrs old with no family health history and I’m by far the healthiest in weight, diet, and exercise then my parents and siblings. Any help would be apperciated.
HI.BEEN ON thyroid mere for 32yrs. Recently went in for a tic bite and asked for thyroid test. Had results mailed to me. They do TSH test only. Was 6.83 and docs comments said to stay on current dose 100mcg & retest in 6 mo. Icalled a month or so later and told nurse I thought this was off and could she ask doc to change. Was changed to 112mcg. I’ve had breathing problems: weakness; right neck pain; extreme aches. Am 54. Menopause at 46-47. High cholesterol mere were added at recent visit but have not taken Cuz I believe thyroid is off. I was prescribed a antiboitic for the tic bite as had a ring around it. This was in July 2012. This is the worst I’ve felt. Any help or suggestions would be appreciated.
Hello Mary,
My suggestions would be to get your adrenals tested, not by your GP – as that will confirm nothing, that test is as unreliable as the blood tests. It does sound like the your thyroid medication is not being taken up properly and breathing problems along with your extreme aches and weakness could be down to that adrenal Issues.
Best wishes
Debbie
What concerns me about the two schools of thought on tsh is that unless medical community can reach consensus. We as patients cost ourselves and medicine a lot of money and continue to suffer poor quality of life. I know that I have low cortisol tested by 24 hr urine and its probably why my original tsh antibody was over a thousand when diagnosed with hashimotos 6 years ago. However because I can’t get a physiologic dose with dhea I continue to suffer even though labs say I’m optimised. The future will be tablets for low bp. Maybe tabs for depression a ppi for gastritis it will go on until someone can totally identify why inflammation starts and how it can be treated rather than the resulting disease and that’s going to take a huge study. In all other forms of medicine disease prevention seems to get a hearing. Talk about cortisol and doctors will hear hydrocortisone and rebound. Putting back the small 10mg dose with a catabolic match would surely help some of us with has hasimotos whose autoimmunity started with poor adrenal function or am I hooked on a theory which I’ve heard but can’t prove!!!!
Hello Jules,
Why can’t you get a physiological dose of Cortisone?
Best regards
Debbie
Hi Chris,
Great article!
Can I please get your thoughts on what’s happening with me as my results are a bit odd? Symptoms are fatigue, anxiety, quicker heart rate, insomnia, clammy hands and feet, weight loss and symptoms are usually worse in the morning than in the evening. My naturopath did a thyroid reflex test and said I was hypothyroid, yet my symptoms seem to be hyperthyroid. I did try 30mg of dessicated thyroid for 2 days and I didn’t like how my appetite ramped up, so I discontinued it. About a week after, my endocrinologist finally ordered the T4 and T3 bloodwork (my TSH has historically been in the normal range) and my TSH is 0.5 (normal range is 0.38-5.5mU/L), T4 free is 21.3 (normal range is 10.5-20 pmol/L) and the T3 free is 4 (normal range is 3.5-6.5 pmol/L). Do you think I’m hyperthyroid as opposed to hypothyroid? Could my T4 free be elevated from taking the 30mg of dessicated thyroid for 2 days?
If you are able to reply to this, thank you very much!
I am on Armour thyroid, 125 mg per day, because I had an incorrect dosage of thyroid (Synthroid I think) many years ago (when i was just trying to see if thryoid drugs would help even if my tests didn’t show problem except for weight gain), – too high of dose seems to have destroyed or seriously damaged my thyroid function. It took a long time to catch – long story so won’t explain here.
So… Hashi’s is not the cause of my thyroid problem. My doctor recently bumped up my Armour from 90 mg to 125mg so I think I may be one of those that Armour doesn’t work on after it changed.
I seem to have a serious lack of “get up and go” much worse than ever. I am 66 so maybe some of this is expected but I want to “try” something else. I don’t mind leading my doctor in some direction (which I hope she will go in) but I’m not sure which direction. Your 5 reasons didn’t seem to address someone who has thyroid problems because of damage due to incorrect treatment, do them? (maybe except for the comment from someone whose husband you thought should be tested for Grave’s disease?)
What “direction” should I go in since my doctor may not want to try a lot of things? If you were to pick 2 or 3 directions (or maybe only 1 if there is one main obvious one) – which would it be? or which article of yours applies mostly to my situation?
You could simply try a different thyroid med i.e. ERFA Thyroid instead of Armour? You can simply swop tablet for tablet; but they each have different fillers and sometimes this can cause problems for some people. ERFA is the same as the original Armour Thyroid.
There is not a problem increasing your dose until you feel ‘well’ and your symptoms resolve; for example I take T3 (liothyronin) 100mcgs PLUS 3-4 grains ERFA Thyroid i.e. 180 – 240mgs; this dose makes me feel good but any less and I get a return of symptoms and don’t feel so good. This is a high dose of thyroid supplement but it works for me. Someone else might feel well on 1/2grain or 30mgs of Armour or ERFA Thyroid; it really is a personal thing but its not dangerous so long as you feel well on the dose.
So changing the type of desiccated thyroid might help or indeed increasing the dose; your lack of get up and go is likely due to low thyroid hormone.
I am currently experiencing hyperthyroidism, and they are trying to rule out Grave’s disease. I don’t have the antibodies, the eye or skin problems, and no family history of thyroid issues. I’m 35, 6 month post partum, have TSH that is almost non existent. And high T4 (70)
You seem to be very knowledgeable with regards to hypothyroidism….do you know of any other reasons besides Graves that I would be hyper? I also forgot to mention, my thyroid ultrasound showed one small colloid nodule that they figured was in the process of degeneration…..they don’t want to biopsy, just look at it in another 6 months. It was hypervascular though, and inflamed.
Thanks so much for any info!
How does ReverseT3 come into play and how do you feel about the Wilson’s temp therapy with the sustained release T3?
At 28yrs I was dx as having an underactive thyroid.
rx: .75mcg? Synthroid.
went up to .150mcg Synthroid within 2yrs.
I go up and down but can’t figure what the pattern is.
Dr: tests tsh only most of the time. I am 40 now with same dr. She has only tested antibodies once and it came back with a speckled reading. I don’t understand these tests very well. She sent me to get tested for lupus and it came back negative.
For almost a yr now I have been on taking two 60mg of Armour plus half of another pill. On top of that was put on Adderall since I was having trouble focusing and keeping things organized at home and work. Adderall has worked well but Armour is not. I am still losing hair and extremely fatigued. I have to drink coffee or frapps at work to help me continue to have energy but by the time I am home I am ready to drop and I can’t because I have a family to care for. What tests should I ask my dr to request?
I am 40 and weigh 185lbs (5’7″) this is what depresses me.
Great post Chris. However I believe your response to Angus #5 was somewhat weak. The only studies I’ve seen suggest that thyroid hormone resistance does not affect the pituitary. This is why synthetic T4 replacement can “normalize” blood tests without relieve symptoms.
Also while low BBT is not definitive, it is a good indicator because it is a symptom that can be measured non-invasively at home.
For those considering Armour, you now have to chew them for full effect.
Hi Chris, Don’t know exactly where to start but will try to put everything together quickly. In 1983 I ended up with Thyroid Cancer and had a thyroidectomy and also lost my parathyroid glands. So I currently take Levothyroxine and Vit D replacement. Slowly but surely I have been losing my battle with weight gain, fatigue, depression, insomnia…you name it. My labs show hypothyroidism most of the time, and in the last 5 years I have developed high blood pressure and extreme fatigue and was diagnosed with fibhromyalsia. I have elevated TBG and show signs of anemia, all tests for sugar levels have been normal. I have started taking B-12 and increasing my Calcium intake. It really sounds like the iodine and selenium could also be involved in this picture. I have always questioned the normal levels on the bloodwork especially since I am
struggling with everything like I am and it is getting worse. What is the best way to talk to my doctor about checking things out further as well as trying the iodine and selenium. Oh I also should say that I am a strick Vegetarian (I do not eat fish or eggs but I do eat dairy such as milk or cheeses w/no rennet). Any suggestions you could give would be greatly appreciated. I am only 55 and I feel like I am 75! Thanks Ann
Hi Chris,
I was wondering if you could help address my questions. I am 35 and suffering from painful, heavy periods due to a large uterine fibroid. I went to a “natural approach” doctor who checked my Thyroid (TSH, antibodies, T4/T3, etc). My TSH was 2.8 and she said my T3 was 2.4. She also noted that I had some antibodies (she said the range is 0-60 and mine was 45). She prescribed Armour Thyroid (30 once a day) and Prometrium (to get my progesterone up to help fibroid issue) and Iodoral iodine. I have been too nervous to take the Armour meds or the Iodoral for fear that it will do damage rather than help? According to another Dr., my thyroid is in the “normal” range, but to her I need Armour (she seems to think it will help with the bleeding, but my ultrasounds show that it’s the large fibroid causing it). My only “hypo” symptoms are hair loss, fatigue, and constipation (but then again those could be from being on iron supplements due to losing so much blood each month?). What would you advise? Take the Armour and Iodoral or will it do more harm? I’m 5’7 and 120lbs so weight loss is not an issue for me. Thank you:)!
Taking Armour thyroid is not dangerous; at the very worst you will experience palpitations and then you stop taking the Armour Thyroid and the palpitations will stop within 12 hours or less.
Fibroids and heavy periods can be due to untreated or undertreated hypothyroidism; you are lucky to have someone who is willing to take that route.
You appear to be suffering a number of symptoms of hypothyroidism and I bet if you thought about it you are suffering many more; in which case taking Armour thyroid is not dangerous. You are being offered a very small dose, 1/2 grain is 30mgs so dont worry about that.
I would though avoid taking the Iodine for now, take one thing at a time then if you experience any changes you know what it is due to.
The TSH blood test is open to debate and certainly determining whether the result is high or low is very much open to interpretation; in my opinion yours is slightly high but definately higher than you would wish for. Many people experience hypothyroid symptoms when the TSH is greater than 2.0; just as you are.
Chris,
I need your help!!!! I had my thyroid removed a year and 1/2 ago and was put on levo 100 mcg after surgery. I have had many of the hypo symptoms since even though all labs were normal. The worst symptom light headed very low heart rate (40’s) and blood pressure sent me to the ER. Had tons of tests in ER for heart and lung and all came back normal. After having every test under the sun and all came back normal I decided to take it upon myself to increase my levo to 125 mcg with my internal med doc’s approval. Gradually my symptoms subsided.
I had been feeling good for 5 months and woke up one day with breast pain and went to doc for exam and he found breast discharge. Had mamo and ultrasound and they said ducts were a little off but normal. I had my doc test for prolactin levels and they came back very high 107. My doc ordered a pituatary MRI and found a 7mm tumor.
I’m now on cabergoline to stop prolactin and shrink tumor.
After all of this my endo doc also decreased my levo to 88 mcg because he said my TSH levels were hyperthyroid (even though I had no symptoms).
I expressed my concerns in changing the dose because of the hypo symptoms i might experience again but he would not listen and said I had to lower it because of the pituatary problem.
It has been 7 weeks since he lowered my dosage and I have the hypo symptoms back (low heart rate, feeling faint, cold hands, chest pains etc)
HELP!!!
No Dr should titrate your thyroid meds with your TSH levels. Also when taking meds most people feel ‘well’ when they have a suppressed TSH. It is not appropriate to compare someone taking thyroid meds TSH with someone who isnt taking thyroid meds – apples and oranges.
There are studies and articles out there which describe in detail the reasons why TSH levels are not a good way of measuring hypothyroidism both on and off meds; so I would check them out. (Sorry dont have any details to hand.)
I can though tell you that your pituitary gland has a very strong affinity to thyroid hormone and this is many times greater than all other tissues around the body. There is plenty of evidence to suggest that the TSH can be suppressed due to the pituitary gland being soaked in thyroid hormone, when actually the peripheral cells including CNS and the brain and heart can be depleted. Your endo is wrong and you are right; after all is he treating you or the blood results?