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Please help me!! Doctors stumped. High TSH and HIGH T4?
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Please help me!! Doctors stumped. High TSH and HIGH T4?

Hi everyone - I am new here, went searching the web for answers that my doctors cannot seem to give, though I think highly of both of them (naturopath and traditional PCP).

I've long felt unwell and suspected my thyroid, but my old PCP always said it was normal when she checked. Finally went to a naturopath this past year and he told me my actual numbers (TSH - 4.2, everything else mostly normal) and considered it high, and put me on levothyroxine (started at 75mg and am now at 125 as there hasn't been much improvement).

After about 4 months on medication, my TSH is improving (now 3.7 -- still too high according to my doctor, but at least improving) -- however, a new snag -- my T4 level is now on the high end (11.9) which suggests hyper, rather than hypo.

Here were my latest results:
T4-THYROXINE 11.9 ug/dL
TSH 3.720 uIU/mL
FREE T3 2.6 pg/mL

Both the naturopath and the PCP are unsure how to continue course of medication. I have strange symptoms I'm not entirely sure I can tie to my thyroid, such as: my tongue is scalloped along both edges and so swollen it doesn't fit well in my mouth -- I am constantly pressing it up against my back teeth, practically chewing on it it's so large. It's disgusting! Also, I've developed a tremor in my left hand -- my thumb/pointer finger tremor/twitch probably once a day now. My hair falls out, my skin is dry. I'm way too tired much of the time. I've gained a lot of weight. I have no libido at all -- although I'm single so it doesn't bother me. :)
I'm an otherwise healthy 38 year old female, if that's helpful.

Anyone with any insight/advice? Thank you in advance.

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27 Comments Post a Comment
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1998071_tn?1327524983
CocoaG,

   I truely feel for you because my symptoms were as bad at one time. I am not a dr just to be clear. I do have 3 years experiance getting expensive tests & being a lab rat before I found the right specialist which is what I am going to recommend you find for your 1st step. I live in NY so there are tons of dr to choose from. Please Please do not trust your general practioner to mess with your hormones. Mine was begging me for the challange but there is just tooo much that can go wrong & it can be dangerous.
   1st thing you should do is find a local endocrinologist. I know with ins in the state its in this might be costly but believe me it will be worth it. As for you TSH (thyroid stimulating hormone or somethimg like that) that is high because your body thinks it needs more thyroid hormone. This may not be true. Im not positive of your medication but that many mg sounds like an overdose could you mean mcg or is there a decimal in there?  
   My thyroid became screwed up because of prolonged opiate use. Your endocrine system is like a team that all needs to work together in harmony. when 1 thing is off, It is likely to through off the balance of other parts. you are close to the same age as I am & seriously too young to be having thyroid issues. When I went to the dr everyone in the waiting room made me feel so young again. I knew I didn't belong there yet. Oh and your tongue, yes I'm not positive but I believe if you read inb the insert of your meds it will say that is one of the side effects. It may be that you just need a different brand like synthroid or levoxil. either way please see a specialist about this & if there is anything else I can answer for you dont hesitate to ask.
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Avatar_m_tn
It appears from your test results that your body is not converting the T4 med to T3 adequately.  This happens quite frequently when taking thyroid meds.  The result is that the T4 level moves up to the high end of the range, but your Free T3 is in the low end of the range.

Free T3 is the most important thyroid test because Free T3 largely regulates metabolism and many other body functions.  Scientific studies have also shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all. Many members, myself included, report that symptom relief required that Free T3 was adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range.  

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 think 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 from a distance.  The letter is sent to the PCP of the patient to help guide treatment.

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


Note especially the statement, "The diagnosis of thyroid insufficiency, and the determination of replacement dosing, must be based upon the patient’s symptoms first, and on the free T4 and free T3 levels second. The TSH test helps only to determine the cause."

Also note, "The ultimate criterion for dose adjustment must always be the clinical response. I have prescribed natural dessicated thyroid for your patient (Armour or Nature-Throid). These contain T4 and T3 (40mcg and 9mcg respectively per 60mg). They are more effective than T4 therapy for most patients. Since they provide more T3 than the thyroid gland produces, the well-replaced patient’s free T4 will be around the middle
of its range or lower, and the FT3 will be high-“normal” or slightly high before the AM dose."


So it seems to me that you need to switch your meds to a combo (NDT) T4/T3 type like Armour Thyroid or Nature-Throid, in order to get your Free T3 level high enough to relieve symptoms.   For info the conversion factor for T4 to a NDT med is one grain of NDT for every 75 mcg of T4
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Avatar_m_tn
Thank you both for your comments and helpful information - I will review it all. I live in a big city with lots of experts so I feel certain I can find an endocrinologist to help me, though I have a follow up with my naturopath this week and will bring this info to him as well.
I really appreciate your time and concern - thank you.
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Avatar_m_tn
Where are you located?  Perhaps some member can recommend a good thyroid doctor based on personal experience.
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Avatar_m_tn
I'm in the Seattle area.
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Avatar_m_tn
Sending PM with info.
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Avatar_f_tn
The scalloped edges of your tongue indicate that your tongue is swollen and pushing on the inside of your teeth.This is a symptom of hypothyroidism.
Possibly you should see an endocrinologist to see what might work better than the meds you are taking now. It seems that you are still very hypo.I have Hashimotos, and I do not feel well unless my TSH is around 1.4. Seems like low numbers, but any higher and all my symptoms come back.Also, I take a lot of Vitamin D. When I was diagnosed a normal level was >35, and mine was only 11. I felt so ill. When the thyroid level was brought down and my Vitamin D brought up by supplements, I felt normal again. Good Luck!
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Avatar_m_tn
Thank you!
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Avatar_m_tn
Gimel is right on.

Two things came to my mind.  #1 as Gimel pointed out and probably most common is the inadequate conversion of T4 into T3.  The second thing would be a Reverse T3 problem.  Reverse T3 (RT3) occurs naturally during the conversion process of T4 into T3. However most times the RT3 is not at a high rate.  RT3 molecule can NOT be used by the body's cells. However it is received by the cells and essentially plugs up the receptors of the true hormone FREE T3 that the body actually uses.

Thus it is IMPERATIVE that you get your Free T3 (FT3) tested.  I would also recommend that you get RT3 tested.

I am not a Dr.

I also believe I have read of others who have tremors when either very Hypo or their T4 levels are too high.

Most people to feel well seem to find that they need to have BOTH of the following as pointed out in gimel's 2nd paragraph.

1) FT4 adjusted to the MIDDLE of the range or slightly higher

AND

2) FT3 adjusted to the UPPER 1/3 of the range.

Being somewhere within range is NOT sufficient.  Each person varies but the above rule of thumb seems to get people very close to feeling well.

Also be aware that if you do start a T3 medication or a natrual Disected product with a T3 compenent.  That the medication itself can cause the TSH to be suppressed.  This is also true of T4 only medication but seems more susiptible when taking a T3 drug.

I'm telling you this so that if all of a sudden your TSH falls WAY low like near zero. Anticipate that it MAY be caused by the medication.  You MUST go by how you FEEL.  NOT the TSH.  Often times a patient will just start to begin to feel better and the TSH falls to below 1 and the Dr goes nuts and thinks you are Hyper and will reduce your drug. EXACTLY the WRONG thing to do.  Again the key it to look at the FT4 and FT3 COMBINED with how you ACTUALLY feel.  

TSH is almost useless once you have determined you have a Thyroid problem.  After that, they may as well not test for TSH anymore.  It is of that little value.

Years ago Dr's had no blood tests what so ever to use. And in my opinion the patients where dramatically better treated than they are today.  Because the Dr's had to rely upon how you actually felt which ultimately is the most important thing. Today Dr's look at a lab result and worry about being sued rather than how the patient actually feels. I really believe if "we" went back to prior to the invention of the TSH test we'd all be much better treated.
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Avatar_f_tn
your tsh indicates hypothroidms while your t4 level indicates hyperthyriodism You should keep in mind that you can have something else other than hypothriodm or hyperthryism.  You may have a problem with the pititary or resistance to thryriod hormone.  keep in mind your elvated tsh is becuase your body wants you to make more thyriod hormone.  it ussually increases to low thyriod hormone levels, not high levels.  However, the symptoms you are describing seem to be more hypothriodsm symptoms (like the swollen tongue), which makes your case not a simple case of hypo/hyper thyriodism.  You could have resistant thyroid hormone sydrome, which is best treated with non typical thyroid medication.
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Avatar_m_tn
This is great stuff. I have the same issue. Hashimoto thyroiditis. Synthroid 125mcg

ft4 - 38  range 10-20
ft3 - 5 range 3-6.5
tsh - 18 range .3-5.5

My synthroid was working fine when i first started it, and then it stopped working, and it seems like my body stopped converting. I think the best treatment is Armour or Nature - Throid. Im seeing my Endo again next week, and will inquire about these full range thyroid replacements. Have you and your doctors been able to problem?
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Avatar_f_tn
CocoaG hasn't participated in this forum in a long time, so its unlikely you will get an answer.

Your labs aren't typical of a simple conversion issue.

Your FT4 is very high.  How are you feeling with FT4 so high?
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Avatar_f_tn
am in Tucson.  any suggestions for entomologists
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Avatar_m_tn
Did you by chance mean Endocrinologist?  If so, I only know of one name and he is widely known, and I expect hard to get to see and expensive.  If interested at all, I'll send a PM with info.
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Avatar_m_tn
I have been treated with thyroxine for years which developed into A-fib at uncertain times but usually a few times a year for the past seven.    Finally one smart Dr. at an E.R. in which I was being converted checked my free t4 level and found that both the TSH and Free t4 were very high.     I saw an endocrinologist who did and MRI on my pituitary gland and found a very small tumor which turned out to be the culprit, telling the thyroid I needed more and my family Dr. kept raising it when in actuality it was the small tumor sending out the signal that I needed more, therefore I was treated for hypothyroidism when really it was hyper.    Right now the Endocrinologist is treating me with tapazole to try to shut down the pituitary gland from sending out the excessive hormone which is lying to the thyroid.     Anyway I hope this helps if you haven't found an answer by now, maybe you  should be looking  into the pituitary gland.  
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649848_tn?1357751184
CocoaG hasn't participated in the forum for nearly 2 years; I doubt she will respond to your comments.

I hope you're doing better now and that they will be removing the pit tumor, at some point.
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Avatar_f_tn
Hi I have same symtoms (symptoms) of some of these people swollen tongue, fatigue, insomnia, I went to a endo and I had a growth which was about a year ago and he did a biopsy and was negative and told me to take vitamin D can you recommend a good endocrinologist for me in Jacksonville florida?
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Avatar_m_tn
I have only one doctor to suggest to you.  First, please post your thyroid related test results and reference ranges shown on the lab report.  Also, please post your actual Vitamin D.  Also, if tested for B12 and ferritin, please post those, with ranges.
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11431925_tn?1418169336
Hello,  I have been on an emotional rollercoaster with my hypothyroid:-(.  I was diagnosed when I was 21!  I have been on Synthroid for 14 years. I can honestly say that I have never felt good even at in range TSH.  My doctor has never and said he will never check my whole panel.  He liked to keep me around 3.5 and I always felt better between 1-2.  Over the last year my thyroid has been up and down.  Most recently I was at my wits end and went to a naturopath for some help, she tested my FT4 and FT3.  In September my readings were;
TSH 1.18
Free T4 - 22
Free T3- 4.4
I eliminated Gluten, Dairy, Egg and refined sugars from my diet and was feeling amazing!  Although I would get flare ups of headache, bodyaches and tiredness.
Recently (Dec 1st) went to doctor with complaints of full body aches, constant headaches daily, TMJ so bad, muscle weakness, heart palpitations, low blood pressure/pulse, extreme fatigue.  He did lots of blood work and Thyroid and Potassium were off;
TSH 26.78
Potassium 5.5
He upped my meds to .137 (synthroid) from .125. told me to cut out high potassium foods.
Tested my Free T4 finally 1 week after upping Synthroid and it went from 22 in Sept to 25 Dec 8.

I am sooooo confused and just want answers!  Has anyone had High Free T4(25) and High TSH(26.78).  He refuses to check my Free T3 etc.  So much more to explain but wont take up whole thread LOL .  Honestly feel like this may be something with my Pituitary gland?

Thank you very much!!!!
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Avatar_m_tn
What are the reference ranges shown on the Sept. lab report, for Free T4 and Free T3?
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11431925_tn?1418169336
FREE T4 - 11-22 pmol/L
FREE T3 - 4.0-7.8 pmol/L
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Avatar_m_tn
Your doctor has certainly done you no favor by only testing and treating you based on TSH. Doctors have been taught that TSH is all they need to know to diagnose and treat a hypothyroid patient.  Wrong.  Unfortunately TSH cannot be shown to correlate well with either of the biologically active thyroid hormones, Free T3 or Free T4, much less correlate well with symptoms, which should always be most important, not just test results, and especially not TSH.  

The main value of TSH is to help diagnose the cause for hypothyroidism, wither primary, or central.  When already taking thyroid med, TSH is basically a useless test.  TSH frequently becomes suppressed when taking adequate thyroid med, so trying to keep you within the range has resulted in you being under medicated and miserable.  

I thought you might like to see this one section taken from a very long list of symptoms that may be related to hypothyroidism.   Even though your med has pushed your free T4 to the top of its range, your body is not converting it very well and your Free T3 is much too low in the range, which results in hypo symptoms.

Pain:

    Migraines
    Chronic headaches
    Chronic back and loin pain
    Wrist pain
    Muscles and joint pain
    Carpal Tunnel Syndrome (hands or forearms)
    Tarsal Tunnel syndrome (legs)
    Joint stiffness
    Tendonitis
    Heel spur
    Plantar fasciitis
    Arthritis
    Gout
    Painful soles of feet
    Muscle cramps
    Aching bones
    Aching muscles
    Joint pain
    TMJ
    Fibromyalgia

Clearly you need to find a good thyroid doctor who will decrease your T4 dose and gradually add some T3 as necessary to relieve your symptoms.   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

If you will tell us your location perhaps we can recommend a doctor based on patient recommendation.  
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11431925_tn?1418169336
Thank you so much, I do have most if not all those symtoms (symptoms):(..I am in BC Canada, I beleive my doc will need to refer me and I am not sure he will!
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Avatar_m_tn
Being in Canada, or the UK, poses special problems getting adequately diagnosed and treated for hypothyroidism.  The main problem is the NHS and its directives that contribute to the "Immaculate TSH Belief" and the use of "Reference range Endocrinology".  One of our members with similar problems getting treated in the UK finally was successful and she described her efforts this way.  

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"



So, with that you might try telling him that from what you have read, 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.  Also, there is 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.

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

In the letter, take special note of this info.

"the ultimate criterion for dose adjustment must always be the clinical response of the patient. I have prescribed natural dessicated thyroid for your patient (Armour, Nature-Throid) because it contains both T4 and T3 (40mcg and 9mcg respectively per 60mg). This assures sufficient T3 levels and thyroid effects in the body. Since NDT has more T3 than the human thyroid gland produces, the well-replaced patient’s FT4 will be below the middle of its range, and the FT3 will be high “normal” or slightly high before the next AM dose."


Of course the "Immaculate TSH Belief' is a big problem for hypo patients.  Until this test was invented about 40 years ago, hypo patients were routinely treated clinically.   One of the many places this is discussed is in this interview with Dr. Derry, which you will find revealing.

http://www.thyroid-info.com/articles/david-derry.htm

After development of the TSH test it was used to diagnose and treat because it supposedly was an accurate reflection of the actual thyroid hormones, Free T3 and Free T4; however, exhaustive searching reveals that TSH cannot be shown to  correlate well with either Free T3 or Free T4, much less with symptoms, which should be the number one concern.  

Here's a link to a scientific study that concluded that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.

http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002

Further damage occurs from reliance on TSH testing because many doctors don't recognize that the TSH level frequently becomes suppressed when taking thyroid meds.  Accordingly, they immediately want to reduce meds when TSH is suppressed, even when Free T3 and Free T4 are well within range and no hyper symptoms are present.  There is no logic to this, since TSH is only a surrogate for thyroid hormone levels and a poor one at that.  Although I assure you that I can provide references to everything I say here, I feel the need to at least provide a few to get some credibility with you and Dr. O.  So, here are some good links about TSH, along with some revealing excerpts.


http://www.bmj.com/content/293/6550/808
"To establish their role in monitoring patients receiving thyroxine replacement biochemical tests of thyroid function were performed in 148 hypothyroid patients studied prospectively. Measurements of serum concentrations of total thyroxine, analogue free thyroxine, total triiodothyronine, analogue free triiodothyronine, and thyroid stimulating hormone, made with a sensitive immunoradiometric assay, did not, except in patients with gross abnormalities, distinguish euthyroid patients from those who were receiving inadequate or excessive replacement. These measurements are therefore of little, if any, value in monitoring patients receiving thyroxine replacement."

Further from the full text in the PDF.

"At present there is no variable that can readily be measured
satisfactorily to assess the end organ response to thyroid hormone
action in patients receiving thyroxine replacement. The serum
concentration of thyroid stimulating hormone is unsatisfactory as
the thyrotrophs in the anterior pituitary are more sensitive to
changes in the concentration of thyroxine in the circulation than
other tissues, which rely more on triiodothyronine.
Our data indicate that the reference ranges for serum total                                
thyroxine, analogue free thyroxine, and thyroid stimulating                        
hormone in patients receiving thyroxine replacement are different
from conventional reference ranges. It is clear from table IV,
however, that serum thyroid hormone and thyroid stimulating
hormone concentrations cannot be used with any degree of con-
fidence to classify patients as receiving satisfactory, insufficient, or
excessive amounts of thyroxine replacement. There is little dif-
ference between the ability of concentrations of total and analogue
free thyroxine to detect over-replacement; the poor diagnostic
sensitivity and high false positive rate associated with such measure-
ments render them virtually useless in clinical practice. Concentra-
tions of total triiodothyronine, analogue free triiodothyronine, and
thyroid stimulating hormone are also incapable of satisfactorily
indicating over-replacement. The tests perform equally badly in
detecting under-replacement.
A question that remains to be answered convincingly is whether it
is clinically necessary to measure thyroid hormone concentrations in
patients receiving thyroxine replacement. The standard replace-
ment dose in Europe and America was 200-400 [mcg a day until 1973,
when it was halved to 100-200 [mcg a day on the basis of biochemical
measurements of thyroid hormone concentrations.  We are not
aware of any study that has shown that this reduction in the standard
dose has had any clinically beneficial effects. Different groups have
shown changes in sodium metabolism, hepatic enzyme activity in
serum, and systolic ejection time intervals' in patients receiving
high doses of thyroxine, but such measurements have not been
shown to be of any relevance to patient care.
We consider that biochemical tests of thyroid function are of
little, if any, value clinically in patients receiving thyroxine
replacement. Most patients are rendered euthyroid by a daily dose
of 100 or 150 ,mcg of thyroxine. Further adjustments to the dose
should be made according to the patient's clinical response."

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Avatar_m_tn
Continued from post above.



From this source, further proof that TSH is almost useless as a diagnostic when already on thryoid meds.
http://www.ncbi.nlm.nih.gov/pubmed/1366242

"When hypothalamic-pituitary function is normal, serum TSH levels measured by ultrasensitive assay yield bioassays of endogenous thyroid action and thus provide an ideal index of thyroid secretion and its relationship to fluctuating endogenous thyroid levels. It is theoretically possible that patients receiving exogenous L-thyroxine for primary hypothyroidism should have suppressed TSH levels if physiological needs are constantly met. To examine this possibility free thyroxine, FT4 and TSH were measured in 90 clinically euthyroid patients receiving treatment with L-thyroxine for primary hypothyroidism. TSH levels were normal in 44, suppressed in 16 and elevated in 30 patients. FT4 levels were normal in 68, elevated in 13 and suppressed in 9 patients. Normal TSH levels were associated with normal FT4 levels in 79.5% of patients, elevated FT4 levels in 13.6% and low FT4 in 6.8%. Suppressed TSH levels were associated with elevated FT4 levels in 37.5% of patients and normal FT4 levels in 62.5%. When FT4 levels were normal, however, TSH levels were normal in only 51.5% and abnormal in 48.5%. We also examined the possibility that FT4 levels may remain within normal range when TSH is suppressed during L-thyroxine treatment for goitre or cancer. FT4 and TSH were measured in 45 patients on L-thyroxine as TSH suppression treatment. TSH was suppressed in 23 patients (51.1%), normal in 20 (44.4%) and elevated in 2 (4.5%). When TSH was suppressed, FT4 was elevated in 30.4% but normal in 69.6% of patients."



Maybe copies of these data and links might cause the doctor to reconsider.  Certainly won't hurt.  And you will need to be aggressive in telling him about all your hypo symptoms, and that you need to reduce your T4 med and add some T3 med to raise your Free T3 level to relieve those symptoms, because scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.  And be sure to give him a copy of this link that I gave you above.  

http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002  


Any questions have or info you might need, we'll be glad to help get you prepared for your next appointment with your doctor.  

If that fails, if you will tell us your location in BC, perhaps we can recommend a doctor in your area.  


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11431925_tn?1418169336
Thank you so much for all of your info!!!  UPDATE:

I have been on Synthroid .137 now for 2 weeks. Doc checked my Free T4 and TSH again.  TSH is now down to .48 and my T4 is the same as last week at 26.  I feel good, heart palps are very very seldom, my body doesn't have full aches and pains.  I have a bit more energy and feel more rested in the morning, but still feel like I need a nap a few hours later.  This fluctuation is so up and down and so quick, kinda scares me!

I see the Doctor tomorrow and I have a feeling I know what he will say, that he is reducing my meds back down to .125 (which still had my T4 at 22), and retest my TSH and T4 in couple weeks and then thats it.

I know also that I will still feel hypo symptoms as usual.

I am going to print the info you provided me and bring it in...I would really like to be refered to a specalist!! I hope he listens to me ;-)

Thanks
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Avatar_m_tn
I think you should use the info I gave you above and tell the doctor that you  need to be tested for Free T3 because scientific studies have shown fre T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.  That study is in the last link I gave you above.  Then you can tell him that you do not need your Free T4 so high, that you are not converting the T4 to T3 adequately, so you would like to reduce your T4 med and add some T3 to raise your Free T3 above the middle of the range.   Be insistent about what you need.

Also, since hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin, you should mention that and ask to be tested for those as well.
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