Aa
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.
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.
A High TSH and High Free T4 value suggests pituatory adenoma or thyroid hormone resistance. But if TSH value is decreasing on levothyroxine or other thyroid hormone pill then the chances of pituatory adenoma is high. In such case remaining on levothyroxine or other thyroid hormone therapy will lead to thyrotoxicosis or hyperthyroid state though TSH not suppressed. In such case Free T4 value is of prime importance to watch out for. Normally Free T4 lies in middle range but if going excess like close to upper threshold of reference range then need to lower the thyroid hormone pill and see if hyperthyroid symptoms are subsiding.
This is a puzzling situation and many doctors will surely miss it and blindly raising levothyroxine dosage to bring TSH in normal range will lead to thyrotoxicosis and many hyperthyroid symptoms can occur.
In such a case the best approach is to either withdraw thyroid replacement treatment fully or stay on very low dose which is not leading to thyrotoxicosis state. TSH value should be fully ignored in such a situation and more focus on Free T4.
This is a puzzling situation and many doctors will surely miss it and blindly raising levothyroxine dosage to bring TSH in normal range will lead to thyrotoxicosis and many hyperthyroid symptoms can occur.
In such a case the best approach is to either withdraw thyroid replacement treatment fully or stay on very low dose which is not leading to thyrotoxicosis state. TSH value should be fully ignored in such a situation and more focus on Free T4.
4 Comments
Thank you so much for your help des900!
Hi,
Since you took thyroid removal surgery you need thyroid hormone treatment anyway but the dose can't be determined from TSH alone. Ideally one require around 1.6 times of body weight in kg. So if your weight is 50 kg then approximately require around 80 mcg. Anyway natural dessicated thyroid NDT is best then levothyroxine as it contain more components especially calcitonin which plays a major role in preventing bone loss.
Since you took thyroid removal surgery you need thyroid hormone treatment anyway but the dose can't be determined from TSH alone. Ideally one require around 1.6 times of body weight in kg. So if your weight is 50 kg then approximately require around 80 mcg. Anyway natural dessicated thyroid NDT is best then levothyroxine as it contain more components especially calcitonin which plays a major role in preventing bone loss.
I would like to try the NDT. I am in the process of trying to find a doctor in my area that will write a prescription for me. I will let you know what happens.
If you haven't find one then no problem you can order it online. But before that find the ideal levothyroxine dosage which will stabilize the symptoms, one which doesn't give you hyperthyroid symptoms or high Free T4. When that's found its easy to find equivalent NDT dose too.
Vitamin D3 need to be retested and brought to optimal range (50 - 70) fast. For that there is mega dose weekly Vitamin D3 pill. No need to take Vitamin D3 daily also its very hard to raise D3 level by taking low dose daily. Daily dose is meant for holding on current levels but not useful for raising levels.
Vitamin D3 need to be retested and brought to optimal range (50 - 70) fast. For that there is mega dose weekly Vitamin D3 pill. No need to take Vitamin D3 daily also its very hard to raise D3 level by taking low dose daily. Daily dose is meant for holding on current levels but not useful for raising levels.
If you find it difficult to get natural dessicated thyroid in your area then PM me, I'll give you a genuine site from where you can order it securely and easily and they ship to almost all countries worldwide.
Natural dessicated thyroid or NDT is the best treatment for treating underactive thyroid hormone issues. In fact it was the only treatment choice before levothyroxine came. Levothyroxine work for some and for some it won't so it doesn't supply all the missing hormones but just T4 while natural thyroid produces T4, T3, T2, T1 and calcitonin. Calcitonin have a crucial role too and it helps to balance the calcium level in blood, suppressing parathyroid hormone activity and thus help reducing calcium loss from bones even in cases of excess thyroid hormone state.
Natural dessicated thyroid or NDT is the best treatment for treating underactive thyroid hormone issues. In fact it was the only treatment choice before levothyroxine came. Levothyroxine work for some and for some it won't so it doesn't supply all the missing hormones but just T4 while natural thyroid produces T4, T3, T2, T1 and calcitonin. Calcitonin have a crucial role too and it helps to balance the calcium level in blood, suppressing parathyroid hormone activity and thus help reducing calcium loss from bones even in cases of excess thyroid hormone state.
Yes, I am in the U.S. and I'm familiar with the area. For a number of years I have been collecting names of doctors recommended by thyroid patients, but unfortunately I don't have one to recommend anywhere near you. SoI suggest you go ahead and try to get your doctor to read the paper and see if you can get agreement for clinical treatment. If the doctor is open to that possibility I am sure that any questions or concerns are adequately covered in the paper. In case that doesn't work I am sending you a PM with some other info to consider. To access the PM just click on your name and then from your personal page, click on messages.
In the interim could you possibly get your regular doctor to test for Free T4, Free T3, Vitamin D, B12 and ferritin? Have you been supplementing for the low D you mentioned? If so, what was the daily dosage?
In the interim could you possibly get your regular doctor to test for Free T4, Free T3, Vitamin D, B12 and ferritin? Have you been supplementing for the low D you mentioned? If so, what was the daily dosage?
1 Comments
She just raised my Synthroid to 100 mcg three days ago and scheduled me to come back in 6 weeks for labs. I haven't started the higher dose yet because I haven't made it by the pharmacy. Vitamin D level was 29 (Ref 30-100) while taking 1,000 units D3/day. My B12 was 1055 without supplements (Ref 211-946) Cholesterol and triglycerides were high and AIC was 5.7 (Ref 4.8-5.6) Glucose was 82. Cortisol and DHEA both WNL. All labs were done fasting for 12 hours.
From your test results I get the impression that your doctor is not up to date on thyroid testing. The tests for Total T4, T3 Uptake and Free T4 Index are outdated and not very useful. Same goes for TSH when already taking thyroid med. The tests you need are for the biologically active thyroid hormones, Free T4 and Free T3, especially Free T3 since it is metabolized by all the cells of your body to provide the needed energy. So you should make sure they always test for Free T4 (not Total T4), and also Free T3 every time you go in for tests. I would even ask the lab person what tests are being done to make sure it is Free T4 and Free T3 because they frequently operate on autopilot and do the same old tests as always, like above.
Looking at your current test results you don't have Free T4 but your Free T3 is way too low in the range, at only 25% of the range. Many of us have found that we needed Free T4 at the middle of its range, at minimum, and Free T3 in the upper third of its range, adjusted as needed to relieve symptoms.
A good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being influenced by resultant TSH levels. Symptom relief should be all important, not just test results. I say that about TSH because frequently hypo patients on adequate thyroid med find that their TSH becomes suppressed below range. That does not mean hypothyroidism, unless there are hyper symptoms due to excessive levels of Free T4 and Free T3.
You can confirm what I have said by reading at least the first two pages of the following link, and please read further if you want to get into the discussion and scientific evidence supporting all that is suggested on page 2. You could even consider giving a copy of the entire paper to your doctor and asking him to review and consider clinical treatment for you, based on symptoms first and Free T4 and Free T3 second.
http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf
Since hypothyroid patients are so frequently deficient in Vitamin D, B12 and ferritin, you should also get those tested and then supplement as needed to optimize. D should be at least 50, B12 in the upper end of its range, and ferritin should be at least 70.
Do you think your doctor would be receptive to all this? If not, then you will need to find a good thyroid doctor that will do so.
Looking at your current test results you don't have Free T4 but your Free T3 is way too low in the range, at only 25% of the range. Many of us have found that we needed Free T4 at the middle of its range, at minimum, and Free T3 in the upper third of its range, adjusted as needed to relieve symptoms.
A good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being influenced by resultant TSH levels. Symptom relief should be all important, not just test results. I say that about TSH because frequently hypo patients on adequate thyroid med find that their TSH becomes suppressed below range. That does not mean hypothyroidism, unless there are hyper symptoms due to excessive levels of Free T4 and Free T3.
You can confirm what I have said by reading at least the first two pages of the following link, and please read further if you want to get into the discussion and scientific evidence supporting all that is suggested on page 2. You could even consider giving a copy of the entire paper to your doctor and asking him to review and consider clinical treatment for you, based on symptoms first and Free T4 and Free T3 second.
http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf
Since hypothyroid patients are so frequently deficient in Vitamin D, B12 and ferritin, you should also get those tested and then supplement as needed to optimize. D should be at least 50, B12 in the upper end of its range, and ferritin should be at least 70.
Do you think your doctor would be receptive to all this? If not, then you will need to find a good thyroid doctor that will do so.
2 Comments
Thank you so much for your input. My GP seems very open to trying new things; however, I don't know how up to date she is on the lab tests that you have referred to and the meds that include T3. The labs that I posted I paid for out of pocket at Doctors Nutrition because I had so much fatigue all of the time.
I will print out the material included in the link that you sent me and take it to her to review the information. I was getting nowhere with my endocrinologist so I won't be going back to him. He only wanted to draw TSH and adjust the Synthroid based on that lab value with no regard to how I told him I felt. If that number was WNL then I should be feeling fine according to him.
I forgot to include that my thyroidectomy was done because I had early Graves Disease and even when my TSH was <.006 during that time I had weight gain, fatigue, hair loss, and other symptoms of Hypothyroidism. No one could ever tell me why my symptoms did not match the diagnosis. I read that residual circulating antibodies may also have an affect on things even after your thyroid is removed.
It seems none of the doctors in my area are up to date on tests and treatment thyroid issues. Do you know of any doctors in my area who are up to date on this? I live on the MS Gulf Coast. Pascagoula, MS
I will print out the material included in the link that you sent me and take it to her to review the information. I was getting nowhere with my endocrinologist so I won't be going back to him. He only wanted to draw TSH and adjust the Synthroid based on that lab value with no regard to how I told him I felt. If that number was WNL then I should be feeling fine according to him.
I forgot to include that my thyroidectomy was done because I had early Graves Disease and even when my TSH was <.006 during that time I had weight gain, fatigue, hair loss, and other symptoms of Hypothyroidism. No one could ever tell me why my symptoms did not match the diagnosis. I read that residual circulating antibodies may also have an affect on things even after your thyroid is removed.
It seems none of the doctors in my area are up to date on tests and treatment thyroid issues. Do you know of any doctors in my area who are up to date on this? I live on the MS Gulf Coast. Pascagoula, MS
I'm sorry. I don't know if you are in the US. That is the coast of the state of Mississippi in the US.
I have the same problem. I had a total thyroidectomy in June of 2015. It took me 8 months to get my TSH in the normal range. My endocrinologist adjust Synthroid on TSH only labs. I finally landed on Synthroid 0.88mcg. Three months after that I started Premarin 0.625 and swung back to hypoactive range. I understand that this can block some of the reception of Synthroid. I have never felt normal the whole time I have been on Synthroid. I am so tired all of the time and my muscles are weak and achy. I have really bad brain fog, blurry vision, hair loss, depression and other symptoms of hypo. I have the scalloped tongue as well and pruned finger tips.
I also have a vitamin D deficiency which I noticed seems to be common with thyroid problems.
My last test results:
TSH 7.3 High Ref 0.450 - 4.50
T4 12.8 High Ref 4.5 - 12.0
T3 uptake 19.0 Low Ref 12 - 39
Free t4 index 2.4 Ref 1.2 - 4.9
Free t3 2.6 Ref 2.0 - 4.4
I don't understand why if my T4 is high that my endocrine system think I need more. This has been such a struggle for me to understand. I fell like my life is passing me by because I feel terrible all of the time. I just want to feel normal again.
Any help would be greatly appreciated.
I also have a vitamin D deficiency which I noticed seems to be common with thyroid problems.
My last test results:
TSH 7.3 High Ref 0.450 - 4.50
T4 12.8 High Ref 4.5 - 12.0
T3 uptake 19.0 Low Ref 12 - 39
Free t4 index 2.4 Ref 1.2 - 4.9
Free t3 2.6 Ref 2.0 - 4.4
I don't understand why if my T4 is high that my endocrine system think I need more. This has been such a struggle for me to understand. I fell like my life is passing me by because I feel terrible all of the time. I just want to feel normal again.
Any help would be greatly appreciated.
2 Comments
Your thyroid results shows that synthroid or levothyroxine is not suitable for you and you feel better when you switch to natural dessicated thyroid as it supply both T4 and T3. The fatigue symptoms is due to low T3 which is evident from your latest result too.
Also this kind of thyroid result is common among people who have adrenal issues. So make sure you get plenty of good restful sleep at night and cut down sugary foods. Also for adrenal support its good to take herb supplement ashwagandha (ayurvedic one).
Also this kind of thyroid result is common among people who have adrenal issues. So make sure you get plenty of good restful sleep at night and cut down sugary foods. Also for adrenal support its good to take herb supplement ashwagandha (ayurvedic one).
Thank you for your help. I will try to find a doctor in my area to help based on the information I have been given but I don't think it will be easy to find one in my area.
Please describe the specific symptoms you identify as hyperthyroid. Also the same for hypothyroid. What were the spit tests you mention and the results, along with reference ranges.
I am sure we can help you locate a good thyroid doctor, but first let's discuss further.
I am sure we can help you locate a good thyroid doctor, but first let's discuss further.
My TSH us 5.88 (high) Range 0.40 - 4.5
My Free T4 is 0.9 Range 0.8 - 1.8 ng/dL
My Free T3 is 2.9 Range 2.3 - 4.2 pg/mL
My free Testosterone is 7.3 (high) Range 0.1 - 6.4 pg/mL
I'm confirmed Hashimoto from 2005. Never felt that it was under control, even though I got Armour thyroid from the start I also, at the same time, get symptoms of Hyper-thyroid (muscle twitches, dizziness,) and I can feel hyper and hypo at the same time. Almost any supplement that I take makes me feel hyper (Vitamin D, magnesium, etc.), even though my D is low (25 L, range 30-100 ng/ml). I am taking 60 (1 grain) of Armour now. The problem is that I was taking up to 210. At 210 I still had hypo symptoms so I started taking Vitamin D and got a little hyper so I lowered the Armour to balance it. I lowered it slowly. Then I also started taking green drinks (kale smoothie) and my hair and skin improved, so I lowered the Armour a little more. Each time I lowered it I felt better, but when I got down to 60 I didn't want to go any lower. Now I am still having symptoms of both. I get extremely depressed because no one, not my doctors, not my family, seem to know what to do. I have gone to a traditional endocrinologist and at first he gave me Armour and it helped, but then when I started getting mixed symptoms he said maybe I'm ADHD and wanted to prescribe Adderol. Then I went to two different integrated doctors and have have had spit tests, and tests for other things. Nothing seems to help. I am looking for suggestions, especially for a good doctor in South Florida, but will travel nearly anywhere in the state. Thank you for considering this.
My Free T4 is 0.9 Range 0.8 - 1.8 ng/dL
My Free T3 is 2.9 Range 2.3 - 4.2 pg/mL
My free Testosterone is 7.3 (high) Range 0.1 - 6.4 pg/mL
I'm confirmed Hashimoto from 2005. Never felt that it was under control, even though I got Armour thyroid from the start I also, at the same time, get symptoms of Hyper-thyroid (muscle twitches, dizziness,) and I can feel hyper and hypo at the same time. Almost any supplement that I take makes me feel hyper (Vitamin D, magnesium, etc.), even though my D is low (25 L, range 30-100 ng/ml). I am taking 60 (1 grain) of Armour now. The problem is that I was taking up to 210. At 210 I still had hypo symptoms so I started taking Vitamin D and got a little hyper so I lowered the Armour to balance it. I lowered it slowly. Then I also started taking green drinks (kale smoothie) and my hair and skin improved, so I lowered the Armour a little more. Each time I lowered it I felt better, but when I got down to 60 I didn't want to go any lower. Now I am still having symptoms of both. I get extremely depressed because no one, not my doctors, not my family, seem to know what to do. I have gone to a traditional endocrinologist and at first he gave me Armour and it helped, but then when I started getting mixed symptoms he said maybe I'm ADHD and wanted to prescribe Adderol. Then I went to two different integrated doctors and have have had spit tests, and tests for other things. Nothing seems to help. I am looking for suggestions, especially for a good doctor in South Florida, but will travel nearly anywhere in the state. Thank you for considering this.
Any info on a good Endocrinologist in PA? We are in North East PA but willing to travel for good care. My daughter (22 yrs) has had issues for over 3 - 4 years. Current Endo at Geisinger is not helping and only did more test because I insisted. She always just changes dose of Synthroid but I think it is pituitary or something more than Hypothyroidism. Test just completed
IGF1 = 258
TSH 4.54 (high daughter does best around 1.5)
T4 1.85
prolactin 22.7
vitamin D 35
ck 80
cortisol am 10.9 (was 2.3 at first test, 6 at 2nd test)
IGF1 = 258
TSH 4.54 (high daughter does best around 1.5)
T4 1.85
prolactin 22.7
vitamin D 35
ck 80
cortisol am 10.9 (was 2.3 at first test, 6 at 2nd test)
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.
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.
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
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
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.
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.
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."
"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."
Thank you so much, I do have most if not all those symtoms:(..I am in BC Canada, I beleive my doc will need to refer me and I am not sure he will!
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.
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.
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!!!!
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!!!!
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.
Hi I have same symtoms 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?
COMMUNITY LEADER
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.
I hope you're doing better now and that they will be removing the pit tumor, at some point.
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.
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.
Have an Answer?
You are reading content posted in the Thyroid Disorders Community
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.
