Aa
Diagnosed with chronic fatigue syndrome.
We’ve ruled everything out including hypothyroidism. I’m not so sure about hypothyroidism. My t4 has been below or bottom of range for as long as i can look back. My T3 has been barely in range and TSH is usually about 2.5.
I never paid attention to my thyroid numbers until I got really ill with newly diagnosed CFS.
CFS is very misunderstood. I’ve heard many people that get diagnosed with CFS should actually be diagnosed with hypothyroidism because of symptoms and numbers like mine. My numbers have always been the same even when I felt great. Can symptoms start to develop over years of having low or marginal numbers?
I think I want I do a trial of T4 or something that will work I have to talk my dr into it though.
I don’t know if hypothyroid symptoms are as severe as CFS symptoms. My fatigue is unbelievable even if I sleep decent which is very rare now. How bad can hypothyroid symptoms actually get? My symptoms are both CFS and hypothyroid but don’t know how close they are in severity. There is no real treatment for CFS. There are for hypothyroidism apparently but do they actually work? Reviews aren’t so optimistic.
Sorry for long post and multiple thoughts.
Thanks
I never paid attention to my thyroid numbers until I got really ill with newly diagnosed CFS.
CFS is very misunderstood. I’ve heard many people that get diagnosed with CFS should actually be diagnosed with hypothyroidism because of symptoms and numbers like mine. My numbers have always been the same even when I felt great. Can symptoms start to develop over years of having low or marginal numbers?
I think I want I do a trial of T4 or something that will work I have to talk my dr into it though.
I don’t know if hypothyroid symptoms are as severe as CFS symptoms. My fatigue is unbelievable even if I sleep decent which is very rare now. How bad can hypothyroid symptoms actually get? My symptoms are both CFS and hypothyroid but don’t know how close they are in severity. There is no real treatment for CFS. There are for hypothyroidism apparently but do they actually work? Reviews aren’t so optimistic.
Sorry for long post and multiple thoughts.
Thanks
The 50 mcg is okay as a start. I expect tht you will ultimately need to add some T3 to your med. In preparation for the possibility it would be good to find out your doctor's thinking regarding T3 med. Ask if you could switch to a desiccated type like NatureThroid or Armour Thyroid, in order to assure getting your Free T3 to an adequate level.
The half life of one week means that in the first week the 50 mcg of Levo will increase your serum level by only 50% of the 25 mcg. In the second week you will reach 75% effect. Third week 87.5%. Fourth week 93.25%. So it takes 4 weeks to reach over 90% of the total effect from the amount of the T4 dosage.
The half life of one week means that in the first week the 50 mcg of Levo will increase your serum level by only 50% of the 25 mcg. In the second week you will reach 75% effect. Third week 87.5%. Fourth week 93.25%. So it takes 4 weeks to reach over 90% of the total effect from the amount of the T4 dosage.
In the words of an excellent thyroid doctor, "The free T3 is not as helpful in untreated persons as the free T4 because in the light of a rather low FT4 the body will convert more T4 to T3 to maintain thyroid effect as well as is possible. So the person with a rather low FT4 and high-in-range FT3 may still be hypothyroid. However, if the FT4 is below 1.3 and the FT3 is also rather low, say below 3.4 (range 2 to 4.4 at LabCorp) then its likely that hypothyroidism is the cause of a person's symptoms." So will all those symptoms you can clearly see that your FT4 and FT3 results are inadequate. No concern with autoimmune antibodies. Reverse T3 is in a good level.
So getting you started on thyroid med is definitely the right thing for you. Since the half- life of T4 is about a week, you will get over 90% of the effect on serum levels in about4 weeks, so there is really no reason to wait the additional 4 weeks when feeling as bd as you do. So you might try to push for followup tests and a dose increase much earlier.
You could supplement with about 500 mcg of B12 to raise your level toward the upper range limit. What was your Vitamin D and what did you take for it? It needs to be at least 50 ng/mL. The fact that it didn't previously help previously was likely because of your low FT4 and FT3 levels at that time.
So getting you started on thyroid med is definitely the right thing for you. Since the half- life of T4 is about a week, you will get over 90% of the effect on serum levels in about4 weeks, so there is really no reason to wait the additional 4 weeks when feeling as bd as you do. So you might try to push for followup tests and a dose increase much earlier.
You could supplement with about 500 mcg of B12 to raise your level toward the upper range limit. What was your Vitamin D and what did you take for it? It needs to be at least 50 ng/mL. The fact that it didn't previously help previously was likely because of your low FT4 and FT3 levels at that time.
1 Comments
Ok.
Do you think 50mcg is too low to start? Is levothyroxine the right course? Also, you said “get over 90% or serum levels in 4 weeks”. What does that actually mean.
Thank you
Do you think 50mcg is too low to start? Is levothyroxine the right course? Also, you said “get over 90% or serum levels in 4 weeks”. What does that actually mean.
Thank you
Thanks for your help
24 hour urine cortisol
60.6. Range <60
Am serum
29.2. Range 5.2-22.5
Saliva 11pm
.063 jb/dL Cushings .112 or greater
B12
498pg/ml Range 211-948
Free T4
.6mg/dL. Range .7-1.9
Free T3
3.2. Range 2.8-5.3
TSH
2.5. Range .4-4.7
Thyroperoxide ab
1.0. <9.0
Thyroglobulin
1.8. < 4.0
T3 reverse
13. Range 10-24
Was vitamin d deficient. Fixed that and didn’t help at all.
24 hour urine cortisol
60.6. Range <60
Am serum
29.2. Range 5.2-22.5
Saliva 11pm
.063 jb/dL Cushings .112 or greater
B12
498pg/ml Range 211-948
Free T4
.6mg/dL. Range .7-1.9
Free T3
3.2. Range 2.8-5.3
TSH
2.5. Range .4-4.7
Thyroperoxide ab
1.0. <9.0
Thyroglobulin
1.8. < 4.0
T3 reverse
13. Range 10-24
Was vitamin d deficient. Fixed that and didn’t help at all.
Please post your cortisol test results and reference ranges shown on the lab reports. Also please post typical Thyroid related test results and reference ranges.
Have you been tested for Vitamin D and B12. Your ferritin is adequate.
Have you been tested for Vitamin D and B12. Your ferritin is adequate.
CFS is defined as a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. Interesting to note that most of the symptoms associated with a diagnosis of CFS are also found in hypothyroidism and hypocortisolism. There is an outstanding hormone doctor that says there is "compelling evidence that much of the fibro/CFS spectrum can be dramatically improved by supplementing with cortisol and thyroid hormone to achieve levels that would dismay most conventional endocrinologists." The latter is because most conventional Endos and other doctors have the "Immaculate TSH Belief" and only pay attention to that for diagnosis and treatment. That is very wrong. If they go beyond TSh it is usually only to test for Free T4 and if within range, they use "Reference Range endocrinology" and say that a test within range is adequate. That is also wrong. A diagnosis of low cortisol is a rarity because they use the morning serum cortisol test (total cortisol) and reference range endocrinology again so that a cortisol deficiency is rarely diagnosed.
That same doctor also says that " low levels of these hormones are very much involved in fibro and CFS. Since every cell in your body has a receptor site specifically for a hormone, when levels are low everything’s affected. Other deficiencies, including vitamin D, ferritin, and sex hormones, need to be corrected as well.
The doctor also encourages dosing with adrenal hormones, using both cortisone and DHEA, and also of thyroid hormone (using natural desiccated thyroid, or NDT). Dosing needs to be based on how the patient feels, rather than solely on lab tests, and TSH is pretty much useless."
So the first thing I suggest is to get a diurnal saliva cortisol panel of 4 tests done to establish your (free) cortisol levels throughout the day. Most doctors won't order this and instead order a morning serum cortisol test, which is total cortisol and not as revealing. If you can't get the doctor to order the saliva testing then you can get it done by ordering a kit online. If the cortisol is low it needs to be corrected with adequate doses of hydrocortisone and DHEA before before starting on thyroid med. If cortisol is high it is an antagonist of thyroid.
Based on your description of a T4 (hopefully a Free T4 test) being at, or below range, and your T3 (again hopefully a Free T3 test) also at or below range, it seems very likely that you are also very hypothyroid. The severity of hypothyroid symptoms vary with the degree of hypothyroidism. I have had muscle aches and joint pains from hypothyroidism that made it extremely difficult to get up off of a chair and to climb stairs. I have had fatigue so bad that I could barely do anything. So I expect that a significant part of your symptoms are thyroid related. You need a good thyroid doctor that will prescribe a desiccated thyroid med, like NatureThroid or Armour Thyroid, as needed to raise your Free T4 high enough to suppress your TSH, and also get your Free T3 into the upper third of the range. A recent excellent scientific study concluded that , "Hypothyroid symptom relief was associated with both a T4 dose giving
TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range." If you think you may have trouble getting your doctor to agree with that treatment I have lots of info I can provide to encourage him to do so.
In addition, since hypothyroidism is "insufficient T3 effect due to inadequate supply of, or response to, thyroid hormone", as I described above, you need to also test and supplement as needed to optimize your Vitamin D, B12 and ferritin levels. D should be at least 50 ng/mL, B12 in the upper end of the range, and ferritin should be at least 100.
If you can get all this done I think you will be amazed at how much better you will feel. Do you think you can get all this done?
That same doctor also says that " low levels of these hormones are very much involved in fibro and CFS. Since every cell in your body has a receptor site specifically for a hormone, when levels are low everything’s affected. Other deficiencies, including vitamin D, ferritin, and sex hormones, need to be corrected as well.
The doctor also encourages dosing with adrenal hormones, using both cortisone and DHEA, and also of thyroid hormone (using natural desiccated thyroid, or NDT). Dosing needs to be based on how the patient feels, rather than solely on lab tests, and TSH is pretty much useless."
So the first thing I suggest is to get a diurnal saliva cortisol panel of 4 tests done to establish your (free) cortisol levels throughout the day. Most doctors won't order this and instead order a morning serum cortisol test, which is total cortisol and not as revealing. If you can't get the doctor to order the saliva testing then you can get it done by ordering a kit online. If the cortisol is low it needs to be corrected with adequate doses of hydrocortisone and DHEA before before starting on thyroid med. If cortisol is high it is an antagonist of thyroid.
Based on your description of a T4 (hopefully a Free T4 test) being at, or below range, and your T3 (again hopefully a Free T3 test) also at or below range, it seems very likely that you are also very hypothyroid. The severity of hypothyroid symptoms vary with the degree of hypothyroidism. I have had muscle aches and joint pains from hypothyroidism that made it extremely difficult to get up off of a chair and to climb stairs. I have had fatigue so bad that I could barely do anything. So I expect that a significant part of your symptoms are thyroid related. You need a good thyroid doctor that will prescribe a desiccated thyroid med, like NatureThroid or Armour Thyroid, as needed to raise your Free T4 high enough to suppress your TSH, and also get your Free T3 into the upper third of the range. A recent excellent scientific study concluded that , "Hypothyroid symptom relief was associated with both a T4 dose giving
TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range." If you think you may have trouble getting your doctor to agree with that treatment I have lots of info I can provide to encourage him to do so.
In addition, since hypothyroidism is "insufficient T3 effect due to inadequate supply of, or response to, thyroid hormone", as I described above, you need to also test and supplement as needed to optimize your Vitamin D, B12 and ferritin levels. D should be at least 50 ng/mL, B12 in the upper end of the range, and ferritin should be at least 100.
If you can get all this done I think you will be amazed at how much better you will feel. Do you think you can get all this done?
1 Comments
Thanks bud. Actually gonna start levothyroxine today. Starting at 50mcg. I don’t know what to expect. Not a big dose but I guess that’s the way it goes. Test in 8 weeks I guess.
I’ve had thorough cortisol tests. Morning serum., 24 hour urine, late night saliva. I guess that’s adequate. Ferritin was 137 I think. Probably about 33% into scale. B12 is only about 50%.
Well, I guess the T4 trial is gonna a start. I’ve been so sick and pretty much been thinking of dying. Life has stopped. Actually applying for disability. This has been going on for a year and a half.
I’m not sure how sick you can get after years of low T4 and if it can finally just wipe you out in a month or two. Whatever got me really got me. I’d be so thankful if it was low thyroid. Can maybe beat that. Chronic fatigue syndrome you can’t do really anything.
I really appreciate your help and guidance.
Any other thoughts what are decent expectations?
Thanks again
I’ve had thorough cortisol tests. Morning serum., 24 hour urine, late night saliva. I guess that’s adequate. Ferritin was 137 I think. Probably about 33% into scale. B12 is only about 50%.
Well, I guess the T4 trial is gonna a start. I’ve been so sick and pretty much been thinking of dying. Life has stopped. Actually applying for disability. This has been going on for a year and a half.
I’m not sure how sick you can get after years of low T4 and if it can finally just wipe you out in a month or two. Whatever got me really got me. I’d be so thankful if it was low thyroid. Can maybe beat that. Chronic fatigue syndrome you can’t do really anything.
I really appreciate your help and guidance.
Any other thoughts what are decent expectations?
Thanks again
Thanks guys . Hi Gimel. We talked a few monts ago a lot about trying to do a T4 trial. Dr Wubben and I were gonna do that but decided not to because all of a sudden my t4 was in range and she thought that I all of a sudden wouldn’t have such bad symptoms of unbelievable fatigue, soreness, sleep issues, depression and etc... when my numbers have been the same for years. My t3 is always about 20% and my T4 is always right at bottom or slightly below. TSH is 2,4 so that’s probably why nobody ever dealt with it or let me know my numbers were questionable. If my TSH was higher I’d probably be diagnosed hypothyroid.
No antibodies or Reverse T3
Now I’ve been diagnosed CFS. You can’t beat that.
I’m just wondering if it would be worth a trial of T4 or something just to see. I’m pretty sure that I all of a sudden didn’t have hypothyroid symptoms after all these years with same numbers. Not sure if it’s possible to get wiped out so quickly.
Also I know CFS and hypothyroid have same symptoms a lot of time but I’m hearing CFS symptoms are way more severe. Mine are unbelievably severe. Pretty much disabled now. Can’t work now
Also, reading reviews of T4 doesn’t sound too promising. A lot of complaints. I know NDT is an option too.
Not sure what to do. Just accept CFS or keep battling. I sure could use something I could beat.
I messaged my gp today to see if we could try something. I’ve asked before too and he pretty much thought that my symptoms were worse than hypothyroid.
Don’t know what to think of believe. They probably shouldn’t have let me run around for years with below level t4 and not think anything of it.
Thanks. Same ol thing still with no idea what to do.
No antibodies or Reverse T3
Now I’ve been diagnosed CFS. You can’t beat that.
I’m just wondering if it would be worth a trial of T4 or something just to see. I’m pretty sure that I all of a sudden didn’t have hypothyroid symptoms after all these years with same numbers. Not sure if it’s possible to get wiped out so quickly.
Also I know CFS and hypothyroid have same symptoms a lot of time but I’m hearing CFS symptoms are way more severe. Mine are unbelievably severe. Pretty much disabled now. Can’t work now
Also, reading reviews of T4 doesn’t sound too promising. A lot of complaints. I know NDT is an option too.
Not sure what to do. Just accept CFS or keep battling. I sure could use something I could beat.
I messaged my gp today to see if we could try something. I’ve asked before too and he pretty much thought that my symptoms were worse than hypothyroid.
Don’t know what to think of believe. They probably shouldn’t have let me run around for years with below level t4 and not think anything of it.
Thanks. Same ol thing still with no idea what to do.
Hypothyroidism should be defined as "insufficient T3 effect in tissue throughout the body, due to inadequate supply of, or response to, thyroid hormone. So trying to diagnose hypothyroidism by looking only at serum thyroid levels, is inadequate. Likewise trying to diagnose by TSH, regardless of the range used is totally inadequate. TSH has only a weak correlation with the biologically active thyroid hormones, Free T4 and Free T3, and has a negligible correlation with tissue T3 effect, which determines a person's thyroid status. In addition there are a number of variables that affect the response to thyroid hormone at the cellular level. So the only time TSH is a valid indicator of thyroid status is at extreme values well below or well above range, in untreated people. Also, when a person has started thyroid therapy, TSH cannot be used to determine medication dosage.
My friend has CFS which can also be called post viral syndrome. Her CFS showed up after Epstein Barr Virus decades ago. She also has multiple chemical sensitivity syndrome which is common with CFS. She has immune issues as she is ill from a small scratch and has had walking pneumonia many times.
I had labs tested for Hashimoto's and TSH was mid 2's with both thyroid peroxidase antibodies (TPOAb) and thyoglobulin antibodies (TgAb) elevated. My TSH was 1.4 to 1.6 with normal thyroid gland function.
Excerpt from Your Thyroid Problems Solved by Dr Sandra Cabot...
"Based on new research, the revised reference range for TSH is 0.3 -2.0 mIU/L.
Research has shown that anyone with a TSH above 2.0 mIU/L is likely to be in the early stages of hypothyroidism!"
I had labs tested for Hashimoto's and TSH was mid 2's with both thyroid peroxidase antibodies (TPOAb) and thyoglobulin antibodies (TgAb) elevated. My TSH was 1.4 to 1.6 with normal thyroid gland function.
Excerpt from Your Thyroid Problems Solved by Dr Sandra Cabot...
"Based on new research, the revised reference range for TSH is 0.3 -2.0 mIU/L.
Research has shown that anyone with a TSH above 2.0 mIU/L is likely to be in the early stages of hypothyroidism!"
In trying to assess a person's thyroid status, symptoms are the most important consideration. Symptoms then need to be confirmed by biochemical testing. So please tell us about all symptoms that you have. Also, please post the actual Free T4 and Free T3 test results and reference ranges shown on the lab report.
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