Aa
Help with which direction to go
I'm looking for some help with where to turn to hopefully resolve some of my ongoing health issues. I've long suspected hypothyroidism but my labs have either been very lacking or the ones I've had have been "normal" despite a lot of symptoms I can't explain -- but which doctors attribute to getting older (I'm in my early 40s) or taking care of my kids. Ugh! I've been having some issues (many long term, some more recent). Sorry this is kind of long but I want to give as much info as I can.. 43 yo, F, 4 kids, 3 miscarriages.
For approx. 10 yrs -- fatigue even with rest, cold (raynauds) hands/feet, don't really sweat, constipation, bloating, weight gain, irritability, forgetful, aches/pains, bodily hair loss (don't really need to shave more than 2-3x month and then usually very sporadic hair), low libido, fat arms and legs, low BBT -- sure there's more, but these are chief complaints.
I've seen a gastro and had colonoscopy, no issues, saw a derm for the hair loss, found nothing, told, well nice you don't need to shave. But, I'd rather know why.
A few years ago my GP suspected B12 def because of extremity tingling. It came back in the low 200s so started first with injections, then sublingual. I also asked for my vit D3, which came back at 9. Also supplementing. B12 is in 500s and Vit D bounces in the 30s-40s. No improvement in fatigue or tingling.
Now about 8 months ago I started losing a ton of head hair such that I basically have male pattern baldness at the crown and immense thinning at the sides. I had taken out an iud about 3-4 months prior so determined that it was likely TE, but was sent to new derm who tested a few things and came back with a positive ANA (1:160). Month later the ANA was down to 1:40, but my GP wanted me to see a rheumatologist. I got in about four months later. He ran every test known to man and only the ANA came back positive, but now 1:640. I have an appointment mid-February to discuss what to do next. He also asked for a hair biopsy, which I had done -- actually a scalp biopsy. No inflammation but thinning hairs, TE and androgenic. He poo pooed the androgenic and said it was the same as TE. Derm said to do rogaine.
In the meantime I went back to my GP to ask her to rule out thyroid because it kept coming up as another cause for elevated ANA. (Sjorgens, smith, RA, CRP, etc., etc. all normal/negative).
Se begrudgingly tested TSH, FT3, FT4, RT3, TPO and TgAB.
T3 2.65 pg/mL. 2.3-4.2
T4 1.08 ng/dL. 0.8-1.8
TSH 1.62 mIU/L. 0.4-4.5
RT3 16 ng/dL 8-25
She called and said all were normal. TPO and TgAB were both negative.
My cycle has also gone crazy, from regular to 6 weeks, super heavy 5-7 days for couple of months and then back to 4 weeks and then 6 weeks, etc.
I read that the T3/RT3 ratio should be higher than 20 and I calculated mine at 16.6. Firstly, is that even true about the ratio -- I mean all of my labs fall in the normal range. And, even if it is true, how big a difference could 16.6 to 20 really make?
Whether it is autoimmune, lupus, udctd, thyroid -- I don't really care what they call it, but I know something is "off" and I feel like my life is passing by, like I'm watching a movie.
I appreciate your time reading this. I am not asking for a diagnosis, but rather help figuring out which path(s) should be explored further and how to find a doctor willing to help.
Thank you,
JJ
For approx. 10 yrs -- fatigue even with rest, cold (raynauds) hands/feet, don't really sweat, constipation, bloating, weight gain, irritability, forgetful, aches/pains, bodily hair loss (don't really need to shave more than 2-3x month and then usually very sporadic hair), low libido, fat arms and legs, low BBT -- sure there's more, but these are chief complaints.
I've seen a gastro and had colonoscopy, no issues, saw a derm for the hair loss, found nothing, told, well nice you don't need to shave. But, I'd rather know why.
A few years ago my GP suspected B12 def because of extremity tingling. It came back in the low 200s so started first with injections, then sublingual. I also asked for my vit D3, which came back at 9. Also supplementing. B12 is in 500s and Vit D bounces in the 30s-40s. No improvement in fatigue or tingling.
Now about 8 months ago I started losing a ton of head hair such that I basically have male pattern baldness at the crown and immense thinning at the sides. I had taken out an iud about 3-4 months prior so determined that it was likely TE, but was sent to new derm who tested a few things and came back with a positive ANA (1:160). Month later the ANA was down to 1:40, but my GP wanted me to see a rheumatologist. I got in about four months later. He ran every test known to man and only the ANA came back positive, but now 1:640. I have an appointment mid-February to discuss what to do next. He also asked for a hair biopsy, which I had done -- actually a scalp biopsy. No inflammation but thinning hairs, TE and androgenic. He poo pooed the androgenic and said it was the same as TE. Derm said to do rogaine.
In the meantime I went back to my GP to ask her to rule out thyroid because it kept coming up as another cause for elevated ANA. (Sjorgens, smith, RA, CRP, etc., etc. all normal/negative).
Se begrudgingly tested TSH, FT3, FT4, RT3, TPO and TgAB.
T3 2.65 pg/mL. 2.3-4.2
T4 1.08 ng/dL. 0.8-1.8
TSH 1.62 mIU/L. 0.4-4.5
RT3 16 ng/dL 8-25
She called and said all were normal. TPO and TgAB were both negative.
My cycle has also gone crazy, from regular to 6 weeks, super heavy 5-7 days for couple of months and then back to 4 weeks and then 6 weeks, etc.
I read that the T3/RT3 ratio should be higher than 20 and I calculated mine at 16.6. Firstly, is that even true about the ratio -- I mean all of my labs fall in the normal range. And, even if it is true, how big a difference could 16.6 to 20 really make?
Whether it is autoimmune, lupus, udctd, thyroid -- I don't really care what they call it, but I know something is "off" and I feel like my life is passing by, like I'm watching a movie.
I appreciate your time reading this. I am not asking for a diagnosis, but rather help figuring out which path(s) should be explored further and how to find a doctor willing to help.
Thank you,
JJ
Irregular cycles are also a symptom of Hypo. Have they always been irregular or just more recently?
Also when my wife was tested for the sex hormones, the Dr wanted the blood to be drawn as soon after the start of her period. And hormone levels fluctuate so much throughout a cycle. the closer you get to a known point the better. The Dr sent a standing order to the lab. Then my wife waited and when she started menstrating she went in ASAP. Of course she always started at about 5PM on a friday and couldn't get in to Monday. Ideally I guess if you had the blood draw the same day as you start menstrating the better.
My wife is 45 and she tested low or below range of Testosterone (two different tests 2 months abpart) and lower but within range Estrogen. Progesterone was about mid range. (all for the follicular phase).
From what I understand, usually as a women approaches menopause or preimenopause, the progesterone levels decrease, leaving the women in an estrogen dominate balance situation. Estrogen dominance can interfere with thyroid metabolism. Which is why we wanted my wife to be tested for the sex hormones to begin with anticipating that she may becoming estrogen dominate. When in fact she is a bit if anything a bit estrogen short. And the low to below normal testosterone would answer my wifes lack of sex drive (at least in part).
My wifes Dr wants to balance out the thyroid before he even tries to mess with Testosterone levels.
Also when my wife was tested for the sex hormones, the Dr wanted the blood to be drawn as soon after the start of her period. And hormone levels fluctuate so much throughout a cycle. the closer you get to a known point the better. The Dr sent a standing order to the lab. Then my wife waited and when she started menstrating she went in ASAP. Of course she always started at about 5PM on a friday and couldn't get in to Monday. Ideally I guess if you had the blood draw the same day as you start menstrating the better.
My wife is 45 and she tested low or below range of Testosterone (two different tests 2 months abpart) and lower but within range Estrogen. Progesterone was about mid range. (all for the follicular phase).
From what I understand, usually as a women approaches menopause or preimenopause, the progesterone levels decrease, leaving the women in an estrogen dominate balance situation. Estrogen dominance can interfere with thyroid metabolism. Which is why we wanted my wife to be tested for the sex hormones to begin with anticipating that she may becoming estrogen dominate. When in fact she is a bit if anything a bit estrogen short. And the low to below normal testosterone would answer my wifes lack of sex drive (at least in part).
My wifes Dr wants to balance out the thyroid before he even tries to mess with Testosterone levels.
Thanks Gimel,
I think that's why I flip flop. I have positive ANA, no thyroid antibodies, and most of my symptoms point more toward thyroid. And honestly, everything else they've checked for based on some symptom has been negative AND causes weight loss, and I only gain weight. Fun.
I will see what the endo says, but I'm just not optimistic I'll be given a chance to try. I am building my info arsenal anyway.
Thanks again!
I think that's why I flip flop. I have positive ANA, no thyroid antibodies, and most of my symptoms point more toward thyroid. And honestly, everything else they've checked for based on some symptom has been negative AND causes weight loss, and I only gain weight. Fun.
I will see what the endo says, but I'm just not optimistic I'll be given a chance to try. I am building my info arsenal anyway.
Thanks again!
For B12 you should be up in the area of at least 750. So, a ways to go there.
Hypothyroid patients don't seem to produce all the necessary stomach acid, so absorption of vitamins and nutrients is adversely affected.
Of course the main cause for diagnosed hypothyroidism is Hashimoto's Thyroiditis, which is an autoimmune system problem. I think I read that if you have an autoimmune problem, there is a greater likelihood of others.
Hypothyroid patients don't seem to produce all the necessary stomach acid, so absorption of vitamins and nutrients is adversely affected.
Of course the main cause for diagnosed hypothyroidism is Hashimoto's Thyroiditis, which is an autoimmune system problem. I think I read that if you have an autoimmune problem, there is a greater likelihood of others.
Thanks. Male or female, I don't know about the FSH either, just saw they checked some of these when looking into central hypoT. I'll do dome more reading.
Yes, the b12. I have been on for almost 3 years and haven't had tremendous improvement in any symptoms but maybe my level hasn't gone high enough. It was the tingling that made my doc check the b12 in the first place.
What is the relationship with thyroid and low b12 and low vit d. Does one cause the other?
Also, could untreated hypoT (years) ultimately cause autoimmunity? Like could an untreated body turn on itself? Or why is it they coexist? Just lucky?
Yes, the b12. I have been on for almost 3 years and haven't had tremendous improvement in any symptoms but maybe my level hasn't gone high enough. It was the tingling that made my doc check the b12 in the first place.
What is the relationship with thyroid and low b12 and low vit d. Does one cause the other?
Also, could untreated hypoT (years) ultimately cause autoimmunity? Like could an untreated body turn on itself? Or why is it they coexist? Just lucky?
Sorry, but being male I have limited experience with FSH testing. : )
As for the tingly nose and cheeks, I couldn't help but think of your low B12 level which can cause tingly feelings in extremities. Do you have prominent cheekbones? LOL
As for the tingly nose and cheeks, I couldn't help but think of your low B12 level which can cause tingly feelings in extremities. Do you have prominent cheekbones? LOL
Hi Gimel,
Yes, thank you....I have been quacking for some time!
I've read some on central hypoT and see some other hormones could also be out of whack. When I saw my doc she ran some hormones to see if early menopause was a cause of my hairloss. I didn't think they had any bearing, so didn't include before.
She said the results were mixed and suggestive of perimenopause. They are midcycle and zero hormone (bc, etc.).
Estradiol. 71 pg/mL. Foll 19-144
Mid 64-357
Lut. 56-214
PostM. < 31
LH. 42.6 mIU/mL. Foll. 1.9-12.5
Mid 8.7-76.3
Lut .5-16.9
PostM. 10-54.7
FSH. 38.8 mIU/mL. Foll. 2.5-10.2
Mid 3.1-17.7
Lut. 1.5-9.1
PostM. 23-116.3
So everything seems okay except FSH. So would that be elevated in perimenopause (okay level for postM)? I have irregular cycles but I am not postM.
The only other thing I can think of is, in addition to tingling hands and feet, I often have a weird sensation in my nose, sometimes into my cheeks. I have allergies and sinus issues, so have been attributing to those. It's not strong, just tingly. I don't have an increase in headaches. I don't think I have peripheral vision loss, but did get reading glasses a couple of years ago for the first time. Pretty typical for 40s.
This may be unnecessary info, just trying to add anything for consideration.
Thanks for your help. If there's anything I might be forgetting, please let me know.
Yes, thank you....I have been quacking for some time!
I've read some on central hypoT and see some other hormones could also be out of whack. When I saw my doc she ran some hormones to see if early menopause was a cause of my hairloss. I didn't think they had any bearing, so didn't include before.
She said the results were mixed and suggestive of perimenopause. They are midcycle and zero hormone (bc, etc.).
Estradiol. 71 pg/mL. Foll 19-144
Mid 64-357
Lut. 56-214
PostM. < 31
LH. 42.6 mIU/mL. Foll. 1.9-12.5
Mid 8.7-76.3
Lut .5-16.9
PostM. 10-54.7
FSH. 38.8 mIU/mL. Foll. 2.5-10.2
Mid 3.1-17.7
Lut. 1.5-9.1
PostM. 23-116.3
So everything seems okay except FSH. So would that be elevated in perimenopause (okay level for postM)? I have irregular cycles but I am not postM.
The only other thing I can think of is, in addition to tingling hands and feet, I often have a weird sensation in my nose, sometimes into my cheeks. I have allergies and sinus issues, so have been attributing to those. It's not strong, just tingly. I don't have an increase in headaches. I don't think I have peripheral vision loss, but did get reading glasses a couple of years ago for the first time. Pretty typical for 40s.
This may be unnecessary info, just trying to add anything for consideration.
Thanks for your help. If there's anything I might be forgetting, please let me know.
Listed below are the symptoms you mentioned. I can find every one of those in lists of typical hypothyroid symptoms.
fatigue even with rest, cold (raynauds) hands/feet, don't really sweat, constipation, bloating, weight gain, irritability, forgetful, aches/pains, bodily hair loss (don't really need to shave more than 2-3x month and then usually very sporadic hair), low libido, fat arms and legs, low BBT -
Your Free T3 and Free T4 results are much too low in the ranges for most people. That results in hypothyroid symptoms.
Since typically most doctors have the "Immaculate TSH Belief' and use "Reference Range Endocrinology" and would think your lab results are fine, the positive ANA test result gave the doctor something to claim as the possible cause for your illness. However, the ANA test is not always a reliable diagnostic. Also, following are typical symptoms of Lupus and rheumatoid arthritis.
Fatigue and fever
Joint pain, stiffness and swelling
Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
Skin lesions that appear or worsen with sun exposure (photosensitivity)
Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
Shortness of breath
Chest pain
Dry eyes
Headaches, confusion and memory loss
From this list it seems you only have the fatigue, joint pain and intolerance to cold. All of those and many more that you have can be related to being hypothyroid. To me, there doesn't seem to be enough evidence to justify prescribing Plaquenil at this time.
Note this info on Plaquenil.
"Hydroxychloroquine is used to prevent or treat malaria infections caused by mosquito bites. .......... This medication is also used, usually with other medications, to treat certain auto-immune diseases (lupus, rheumatoid arthritis) when other medications have not worked or cannot be used. It belongs to a class of medications known as disease-modifying antirheumatic drugs (DMARDs). It can reduce skin problems in lupus and prevent swelling/pain in arthritis, though it is not known exactly how the drug works."
Also, note the potential side effects of Plaquenil.
"Side Effects
Nausea, stomach cramps, loss of appetite, diarrhea, dizziness, or headache may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.
Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.
Tell your doctor immediately if any of these unlikely but serious side effects occur: arm/leg/back pain, fast/irregular heartbeat, hair loss/color change, mental/mood changes (e.g., anxiety, depression, hallucinations), ringing in the ears/hearing loss, worsening of skin conditions (e.g., psoriasis).
This medication may infrequently cause serious (sometimes permanent) eye problems or muscle damage, especially if you take it for a long time."
There is an old saying, that, "If it walks like a duck, and squawks like a duck, it is most likely a duck." In your case that would be hypothyroidism. If it were me, I would forget about Plaquenil and push hard to see a good thyroid doctor as soon as possible and get medication necessary to raise the Free T3 level into the upper part of the range and Free T4 to around the middle of the range, and take supplements to get Vitamin D, B12 and ferritin levels optimized.
It is kind of ironic when you think about it, that doctors are so willing to prescribe a drug like Plaquenil, on so little hard evidence, yet won't even consider prescribing a therapeutic trial of thyroid med, in spite of you having all those symptoms that are typical of being hypothyroid, and FT3 and FT4 that are so low in their ranges. There is something terribly wrong with our medical practices and procedures. Clinical treatment based on signs, symptoms, and experience has been essentially discarded and replaced by over reliance on lab tests and reference ranges.
fatigue even with rest, cold (raynauds) hands/feet, don't really sweat, constipation, bloating, weight gain, irritability, forgetful, aches/pains, bodily hair loss (don't really need to shave more than 2-3x month and then usually very sporadic hair), low libido, fat arms and legs, low BBT -
Your Free T3 and Free T4 results are much too low in the ranges for most people. That results in hypothyroid symptoms.
Since typically most doctors have the "Immaculate TSH Belief' and use "Reference Range Endocrinology" and would think your lab results are fine, the positive ANA test result gave the doctor something to claim as the possible cause for your illness. However, the ANA test is not always a reliable diagnostic. Also, following are typical symptoms of Lupus and rheumatoid arthritis.
Fatigue and fever
Joint pain, stiffness and swelling
Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
Skin lesions that appear or worsen with sun exposure (photosensitivity)
Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
Shortness of breath
Chest pain
Dry eyes
Headaches, confusion and memory loss
From this list it seems you only have the fatigue, joint pain and intolerance to cold. All of those and many more that you have can be related to being hypothyroid. To me, there doesn't seem to be enough evidence to justify prescribing Plaquenil at this time.
Note this info on Plaquenil.
"Hydroxychloroquine is used to prevent or treat malaria infections caused by mosquito bites. .......... This medication is also used, usually with other medications, to treat certain auto-immune diseases (lupus, rheumatoid arthritis) when other medications have not worked or cannot be used. It belongs to a class of medications known as disease-modifying antirheumatic drugs (DMARDs). It can reduce skin problems in lupus and prevent swelling/pain in arthritis, though it is not known exactly how the drug works."
Also, note the potential side effects of Plaquenil.
"Side Effects
Nausea, stomach cramps, loss of appetite, diarrhea, dizziness, or headache may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.
Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.
Tell your doctor immediately if any of these unlikely but serious side effects occur: arm/leg/back pain, fast/irregular heartbeat, hair loss/color change, mental/mood changes (e.g., anxiety, depression, hallucinations), ringing in the ears/hearing loss, worsening of skin conditions (e.g., psoriasis).
This medication may infrequently cause serious (sometimes permanent) eye problems or muscle damage, especially if you take it for a long time."
There is an old saying, that, "If it walks like a duck, and squawks like a duck, it is most likely a duck." In your case that would be hypothyroidism. If it were me, I would forget about Plaquenil and push hard to see a good thyroid doctor as soon as possible and get medication necessary to raise the Free T3 level into the upper part of the range and Free T4 to around the middle of the range, and take supplements to get Vitamin D, B12 and ferritin levels optimized.
It is kind of ironic when you think about it, that doctors are so willing to prescribe a drug like Plaquenil, on so little hard evidence, yet won't even consider prescribing a therapeutic trial of thyroid med, in spite of you having all those symptoms that are typical of being hypothyroid, and FT3 and FT4 that are so low in their ranges. There is something terribly wrong with our medical practices and procedures. Clinical treatment based on signs, symptoms, and experience has been essentially discarded and replaced by over reliance on lab tests and reference ranges.
Thanks.
Yes, I just got an appointment for March, although I'm going to keep looking for a "better" endo. I've called to inquire if the doc treats by symptoms and got a quick yes. Not overly convinced yet.
I have a follow up with my rheumatologist next month. He wants to do a 6 month trial of plaquenil to see if it can bring my ANA down and relieve symptoms. At which time I would go off and retest. And then monitor symptoms.
I'm torn because although I've long suspected a thyroid problem, I've never gotten anyone willing to give me a trial. And, I do just want to feel better.
Should I hold off on the plaquenil trial? Can I add a thyroid trial (I assume that wouldn't be wise if for no other reason, I wouldn't be able to tell which was helping, assuming either or both would!)?
Also, I feel that even if I can get a.trial of thyroid, it may be a battle, and I might be done with the plaquenil trial by that point.
What would you do?
Yes, I just got an appointment for March, although I'm going to keep looking for a "better" endo. I've called to inquire if the doc treats by symptoms and got a quick yes. Not overly convinced yet.
I have a follow up with my rheumatologist next month. He wants to do a 6 month trial of plaquenil to see if it can bring my ANA down and relieve symptoms. At which time I would go off and retest. And then monitor symptoms.
I'm torn because although I've long suspected a thyroid problem, I've never gotten anyone willing to give me a trial. And, I do just want to feel better.
Should I hold off on the plaquenil trial? Can I add a thyroid trial (I assume that wouldn't be wise if for no other reason, I wouldn't be able to tell which was helping, assuming either or both would!)?
Also, I feel that even if I can get a.trial of thyroid, it may be a battle, and I might be done with the plaquenil trial by that point.
What would you do?
I don't see anything in those old test results that conflict with what you have previously heard from here. Namely that your symptoms, along with Free T3 and Free T4 results that are too low in the range, along with a normal TSH indicate central hypothyroidism. Also, those Vitamin D, B12 and ferritin results also show as too low in their ranges. So , just stick with your plan to see a good thyroid doctor and get started on thyroid meds and gradually raise your Free T3 and Free T4 as necessary to eventually relieve symptoms. Along with that you can supplement on your own to get your D to 55-60, your B12 into the upper end of the range, and your ferritin to about 60 minimum. So, have you made an appointment?
I just stumbled across some old lab work, which as I mentioned, is probably inadequate at best BUT thought some of the experts on here might make some sense of it.
Again, I have been struggling with symptoms for 10+ years.
Nov 2002
Vit B12. 387. 200-1100 pg/mL
T3, Total. 203. 60-161 pg/dL. Flagged HIGH
T3 Uptake. 23. 24-37%. Flagged LOW
FT4 1.1. .8-1.8 ng/dL. (I think, there's a hole punch in the name)
TSH. 1.92. .4-5.5. MIU/L
This is around when I first started complaining of not feeling well. My doc got the results and said some where flagged but that it didn't mean anything.
Oct 2005
TSH w/ Free T4 reflex. 0.94. .4-4.0. mIU/L. ***looks like TSH range, not sure how this is different
Nov 2008
TSH w/ Free T4 reflex. 1.41. .4-4.0. mIU/L. ***again looks like TSH range, not sure how this is different
Sept 2011
TSH. 1.99. 0.27-4.20. mIU/L
Ferritin. 43. 15-150 ug/L
March 2012
TSH. 1.6. 0.45-4.5 uIU/mL
FT4. 1.06. .82-1.77. Ng/dL
B12. 314. 211-946
Oct 2012
Vit D3. 20 30-100 (was supplementing at this time)
Vit B12 335. 200-1100 (was also supplementing)
I'm not sure that this is enough info or if it really does just show that my thyroid is normal.
Thanks in advance for your comments/input!
Again, I have been struggling with symptoms for 10+ years.
Nov 2002
Vit B12. 387. 200-1100 pg/mL
T3, Total. 203. 60-161 pg/dL. Flagged HIGH
T3 Uptake. 23. 24-37%. Flagged LOW
FT4 1.1. .8-1.8 ng/dL. (I think, there's a hole punch in the name)
TSH. 1.92. .4-5.5. MIU/L
This is around when I first started complaining of not feeling well. My doc got the results and said some where flagged but that it didn't mean anything.
Oct 2005
TSH w/ Free T4 reflex. 0.94. .4-4.0. mIU/L. ***looks like TSH range, not sure how this is different
Nov 2008
TSH w/ Free T4 reflex. 1.41. .4-4.0. mIU/L. ***again looks like TSH range, not sure how this is different
Sept 2011
TSH. 1.99. 0.27-4.20. mIU/L
Ferritin. 43. 15-150 ug/L
March 2012
TSH. 1.6. 0.45-4.5 uIU/mL
FT4. 1.06. .82-1.77. Ng/dL
B12. 314. 211-946
Oct 2012
Vit D3. 20 30-100 (was supplementing at this time)
Vit B12 335. 200-1100 (was also supplementing)
I'm not sure that this is enough info or if it really does just show that my thyroid is normal.
Thanks in advance for your comments/input!
That is helpful. I suspect that after the battle to get a trial, it will be a battle to stay on long enough to see if symptoms will abate. Seeing as I've been struggling (and given up numerous times) to get resolution for YEARS, I kind of guessed it wouldn't be a quick resolution to improvement. So thank you for confirming that I need to test and retest several times.
My thought is to get all the info together along with a general game plan -- like not just 6 weeks and if no symptom improvement, off the trial.
Thank you again.
My thought is to get all the info together along with a general game plan -- like not just 6 weeks and if no symptom improvement, off the trial.
Thank you again.
For your key points, this is a link, written by a good thyroid doctor.
http://www.hormonerestoration.com/Thyroid.html
That is a reasonable plan. The usual starting dose is 25-50 mcg. I would think that you could handle 50 mcg. Then wait for 4-5 weeks to re-test. Don't be dismayed if the levels don't rise at first. The reason is that total serum thyroid levels are a sum of both endogenous and exogenous sources. As exogenous sources are added, the TSH may go down and, thereby, reduce the amount of natural (endogenous) thyroid hormone produced. Thus, only when the TSH is no longer a significant factor will the total serum levels typically start to rise.
I expect that it might be several cycles of increased meds before you can be sure of how your body is converting the T4 to T3. If you find that you need to add some T3, then the effect on serum levels will show up rather quickly, say a week or two. However, since symptoms are the important consideration, not just test results, it takes longer to determine when you reach optimal doses. I say that because symptom relief can sometimes lag behind changes in serum thyroid levels, since your body has to heal and that can depend on the severity of your hypothyroidism and length of time you have suffered with it.
If you get the drift that nothing about hypothyroidism is exactly straightforward and easy to diagnose and treat, then I have achieved my intent. LOL However, it is not as complicated as you might think right now. The main concern is that it is time consuming to find a good thyroid doctor, then get on the right meds, and finally gradually increase meds as necessary to relieve symptoms.
http://www.hormonerestoration.com/Thyroid.html
That is a reasonable plan. The usual starting dose is 25-50 mcg. I would think that you could handle 50 mcg. Then wait for 4-5 weeks to re-test. Don't be dismayed if the levels don't rise at first. The reason is that total serum thyroid levels are a sum of both endogenous and exogenous sources. As exogenous sources are added, the TSH may go down and, thereby, reduce the amount of natural (endogenous) thyroid hormone produced. Thus, only when the TSH is no longer a significant factor will the total serum levels typically start to rise.
I expect that it might be several cycles of increased meds before you can be sure of how your body is converting the T4 to T3. If you find that you need to add some T3, then the effect on serum levels will show up rather quickly, say a week or two. However, since symptoms are the important consideration, not just test results, it takes longer to determine when you reach optimal doses. I say that because symptom relief can sometimes lag behind changes in serum thyroid levels, since your body has to heal and that can depend on the severity of your hypothyroidism and length of time you have suffered with it.
If you get the drift that nothing about hypothyroidism is exactly straightforward and easy to diagnose and treat, then I have achieved my intent. LOL However, it is not as complicated as you might think right now. The main concern is that it is time consuming to find a good thyroid doctor, then get on the right meds, and finally gradually increase meds as necessary to relieve symptoms.
Thank you. I am going to print out all the info and try to pull together applicable key points and make an appointment and see if I can get a trial.
I guess my plan would be to try t4 only and monitor if my ft3 goes up in correlation.
Thoughts on what a reasonable starting dose, length and regimen (add more, when). How long trial before adding t3 and then how long to retest.
What is reasonable time to give it to see improvement or not?
Thanks again!
I guess my plan would be to try t4 only and monitor if my ft3 goes up in correlation.
Thoughts on what a reasonable starting dose, length and regimen (add more, when). How long trial before adding t3 and then how long to retest.
What is reasonable time to give it to see improvement or not?
Thanks again!
I am not sure what I would call typical. Main stream medicine typically recommends that only T4 med is needed. We know that frequently that is inadequate to raise T3 levels enough. The other school of thought is that the thyroid gland produces both T4 and T3, so why not just medicate with both in order to assure adequate levels of Free T3.
There is no right or wrong here, just whatever works to relieve symptoms for the individual patient. Typically symptom relief requires Free T3 in the upper part of its range and Free T4 at the middle of its range, at minimum. But each patient may have different optimal levels also. So, many hypo patients start on T4 meds and then re-test every 4-5 weeks, and gradually adjust upward to achieve the mid-range target for Free T4. If Free T3 lags the increase in Free T4 then some T3 med can be added to raise the Free T3 level independently from the Free T4.
As a percentage of the range, your Free T3 level is slightly lower than your Free T4 level, but I would not yet conclude that you have a conversion problem. By the way, in looking at your test results, I thought you might find this interesting. In the words of a good 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."
As for what is hocus pocus and what is valid medical science, when it comes to testing and treating hypothyroidism, there is no valid medical science available that confirms the predominant current practices. To the contrary, I can find lots of scientific studies that undermine the whole concept behind the "Immaculate TSH Belief" and the use of "Reference Range Endocrinology". Accordingly, you might find this link and the following quote from it to be of interest.
http://www.nahypothyroidism.org/why-doesnt-my-doctor-know-all-of-this/
"Similarly, the Endocrine Society, the American Association of Clinical Endocrinologists and the American Thyroid Association also have a long history of guidelines and recommendations that are not supported by the medical literature and fail to adjust or abandon recommendations when new understanding and knowledge contradicts their recommendations. A case in point is the recommendation by these societies that a normal TSH adequately rules out thyroid dysfunction, despite massive amounts of literature that demonstrate this not to be the case (see Diagnosis of Hypothyroidism) or that T4 only replacement is adequate for most patients. A doctor who simply follows outdated society treatment guidelines that relies on a simple laboratory test and ignores the clinical aspects of a patient is not practicing evidence-based medicine. (1-7). Such doctors may be adequate as lab technicians, but as doctors and clinicians they fall short (1-7). This method of practice is consistently rebuked as improper and poor medicine, but has become the standard used by a large percentage of endocrinologists and physicians who feel medicine can be related to simply reading “normal” or “abnormal” in a laboratory column."
There is no right or wrong here, just whatever works to relieve symptoms for the individual patient. Typically symptom relief requires Free T3 in the upper part of its range and Free T4 at the middle of its range, at minimum. But each patient may have different optimal levels also. So, many hypo patients start on T4 meds and then re-test every 4-5 weeks, and gradually adjust upward to achieve the mid-range target for Free T4. If Free T3 lags the increase in Free T4 then some T3 med can be added to raise the Free T3 level independently from the Free T4.
As a percentage of the range, your Free T3 level is slightly lower than your Free T4 level, but I would not yet conclude that you have a conversion problem. By the way, in looking at your test results, I thought you might find this interesting. In the words of a good 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."
As for what is hocus pocus and what is valid medical science, when it comes to testing and treating hypothyroidism, there is no valid medical science available that confirms the predominant current practices. To the contrary, I can find lots of scientific studies that undermine the whole concept behind the "Immaculate TSH Belief" and the use of "Reference Range Endocrinology". Accordingly, you might find this link and the following quote from it to be of interest.
http://www.nahypothyroidism.org/why-doesnt-my-doctor-know-all-of-this/
"Similarly, the Endocrine Society, the American Association of Clinical Endocrinologists and the American Thyroid Association also have a long history of guidelines and recommendations that are not supported by the medical literature and fail to adjust or abandon recommendations when new understanding and knowledge contradicts their recommendations. A case in point is the recommendation by these societies that a normal TSH adequately rules out thyroid dysfunction, despite massive amounts of literature that demonstrate this not to be the case (see Diagnosis of Hypothyroidism) or that T4 only replacement is adequate for most patients. A doctor who simply follows outdated society treatment guidelines that relies on a simple laboratory test and ignores the clinical aspects of a patient is not practicing evidence-based medicine. (1-7). Such doctors may be adequate as lab technicians, but as doctors and clinicians they fall short (1-7). This method of practice is consistently rebuked as improper and poor medicine, but has become the standard used by a large percentage of endocrinologists and physicians who feel medicine can be related to simply reading “normal” or “abnormal” in a laboratory column."
Okay, thank you. It is exhausting and rather time consuming figuring it out. I do so appreciate your help.
So is it typical to do t4 only and recheck levels after a period to see how ft3 responds? Or if you don't convert well, will it make you feel worse? Or, do you do both and recheck?
Also, I saw a scale on some website (sorry can't recall at the moment) about where ft3 and ft4 fall on their respective scales compared to each other. It said if your ft3 is further from optimal than ft4, you may have a conversion problem. Have you heard of this? Truth? If I did mine right, I believe it indicated I didn't convert well.
Just hard to tell what is hocus pocus and what is valid medical science.
So is it typical to do t4 only and recheck levels after a period to see how ft3 responds? Or if you don't convert well, will it make you feel worse? Or, do you do both and recheck?
Also, I saw a scale on some website (sorry can't recall at the moment) about where ft3 and ft4 fall on their respective scales compared to each other. It said if your ft3 is further from optimal than ft4, you may have a conversion problem. Have you heard of this? Truth? If I did mine right, I believe it indicated I didn't convert well.
Just hard to tell what is hocus pocus and what is valid medical science.
Older doctors are sometimes more knowledgeable, experienced and flexible in how they test and treat thyroid patients. But I wouldn't want to spend the time that would be required sorting through doctors based on their age, just to find the one you need. I could also make an argument that younger doctors should be more extensively trained and aware of different concepts of testing and treatment. I have used a lot of different criteria during countless hours of trying to locate good thyroid doctors for members. It is still a hit or miss situation unfortunately, with a lot more misses than hits. LOL
The very best way is to get first hand information about a doctor, from another hypo patient. We try to collect as many of those doctors' names as we can, so that we can provide to other members. That was the source of the doctor that I suggested for you.
You asked about symptoms. Symptoms that can be related to hypothyroidism comprise a very long list. Following is a link to just 26 of the more typical hypo symptoms.
http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html
As for meds, a T4 med is much slower acting and builds up rather slowly in the blood. So T4 meds can be taken once a day. T3 meds act faster and are usually split into two doses. This helps even out the effect over the day. T4 meds can work fine if the patient's body adequately converts the T4 med to T3. Since Free T3 is the test that correlates best with hypo symptoms, if the patient's body does not adequately convert T4 to T3, and the Free T3 level remains too low in the range, with attendant symptoms, then a source of T3 would be needed.
The very best way is to get first hand information about a doctor, from another hypo patient. We try to collect as many of those doctors' names as we can, so that we can provide to other members. That was the source of the doctor that I suggested for you.
You asked about symptoms. Symptoms that can be related to hypothyroidism comprise a very long list. Following is a link to just 26 of the more typical hypo symptoms.
http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html
As for meds, a T4 med is much slower acting and builds up rather slowly in the blood. So T4 meds can be taken once a day. T3 meds act faster and are usually split into two doses. This helps even out the effect over the day. T4 meds can work fine if the patient's body adequately converts the T4 med to T3. Since Free T3 is the test that correlates best with hypo symptoms, if the patient's body does not adequately convert T4 to T3, and the Free T3 level remains too low in the range, with attendant symptoms, then a source of T3 would be needed.
One other new symptom, which I have no idea if it relates to thyroid and/or autoimmune. For about 4-5 weeks, I've had this minor swelling on the front of my shins just below the knee. It comes and goes, maybe 1-2 x a week.
When I first noticed it, I thought it was just fat. It was kind of squishy. But the next day it was totally gone. Sometimes my legs feel heavier, sluggish and even my feet/ankles, although I've had no discernible swelling anywhere except right below the knee.
I thought perhaps it was too much salt, but that hasn't proven true and I can't find any pattern as of yet.
I've never had any issues with swelling and nothing new has changed.
Any thoughts? Is this something I should check with my doctor? It doesn't hurt or anything and it doesn't seem to add any new problems.
Thanks!
When I first noticed it, I thought it was just fat. It was kind of squishy. But the next day it was totally gone. Sometimes my legs feel heavier, sluggish and even my feet/ankles, although I've had no discernible swelling anywhere except right below the knee.
I thought perhaps it was too much salt, but that hasn't proven true and I can't find any pattern as of yet.
I've never had any issues with swelling and nothing new has changed.
Any thoughts? Is this something I should check with my doctor? It doesn't hurt or anything and it doesn't seem to add any new problems.
Thanks!
Thank you for the feedback. And, yes, they were free levels.
And, I think you're right -- fnding a doctor IS the trick.
I'm wondering if I went to an older doctor, someone who practiced before the blood tests, I'd have better luck.
I have, as you can see, followed many symptoms through other possible causes (gastro, several derms, hematologist, rheumatologist, etc.), done colonoscopy, scalp biopsy, and in the last six weeks over $3000 in lab work (the lupus blood work is expensive!) and not one thing has been abnormal, except the ANA, which can also be elevated for no reason in some people.
And yet, I still feel terrible.
Couple additional questions. First, how risky is it to take thyroid replacement if you don't need it? I assume this is the main reason it's so hard to get a trial based on symptoms.
Secondly, I saw on another post about the myxedema skin test. I can't pinch skin on my arms (or legs for that matter). While I am overweight, I am not obese, and my arms always just feel more disproportionate. When I saw my primary doctor to run the thyroid levels, I asked why my weight had kept going up (strange, too, how every other thing I've been checked for weight LOSS is a symptom!), especially my arms, she just said that that was where I gained weight. So, how reliable is the mydexema skin test?
Also,what symptoms would be the most indicative of hypothyroidism?
Lastly, what would be the best trial? T4 only or T4/T3?
Thanks again for your help!
And, I think you're right -- fnding a doctor IS the trick.
I'm wondering if I went to an older doctor, someone who practiced before the blood tests, I'd have better luck.
I have, as you can see, followed many symptoms through other possible causes (gastro, several derms, hematologist, rheumatologist, etc.), done colonoscopy, scalp biopsy, and in the last six weeks over $3000 in lab work (the lupus blood work is expensive!) and not one thing has been abnormal, except the ANA, which can also be elevated for no reason in some people.
And yet, I still feel terrible.
Couple additional questions. First, how risky is it to take thyroid replacement if you don't need it? I assume this is the main reason it's so hard to get a trial based on symptoms.
Secondly, I saw on another post about the myxedema skin test. I can't pinch skin on my arms (or legs for that matter). While I am overweight, I am not obese, and my arms always just feel more disproportionate. When I saw my primary doctor to run the thyroid levels, I asked why my weight had kept going up (strange, too, how every other thing I've been checked for weight LOSS is a symptom!), especially my arms, she just said that that was where I gained weight. So, how reliable is the mydexema skin test?
Also,what symptoms would be the most indicative of hypothyroidism?
Lastly, what would be the best trial? T4 only or T4/T3?
Thanks again for your help!
Just sent you a PM with info on a doctor in your area, that has been recommended by thyroid patients. To access, just click on your name and that takes you to your personal page Then click on messages.
Many people that are symptomatic consistent with hypo like you are need to have BOTH of the following to be true. Both the Free T4 and Free T3 need to be WELL up into the range.
The tests above do NOT indicate whether or not the tests you have had done are for FREE T4 and FREE T3 or whether they are both "total"/ Total tests are now outdated and are of little value.
But the rule of thumb are to have BOTH of the following:
1) Free T4 to be in the MIDDLE of the range if not a bit HIGHER. That is 50% of the range. ASSUMING your tests were indeed Free T4 (as the reference range is consistent whith what we normally see for free T4) the result is only 28%. WELL below the rule of thumb of 50% or more
AND- That means in addition
2) Free T3 to be between 50% and 67% of the range (upper half to upper 1/3 of the range). Your calculation comes out at measly 18.4 %. A FAR cry from the rule of thumb 50% or more. And most people seem to need closer to the upper 67%.
So what we have here is the classic conundrum. YOu have all the symtpoms that are consistent with Hypo. Yet your lab tests are all within the "normal" range. However the facts are that people often do not feel well with your labs and feel better when you add thyroid medication.
In addition. The B-12 tests and ranges are woefully inadequate. Most Eurpoean and other countries the lower part of the range does not begin until 500. And you stated that you are now only innthe 500's. Many people do not feel well until they are closter to the very upper range, certainly over 700 and many people need to be 900 or so. So I think there is room for further supplementing that can go on.
I think you need to talk to your Dr with all your symptoms and how consisten they ALL are with Hypo. And ask to start on a trial dose of t hyroid medication. And then retest and see how you feel. YOur levels are low enough that you may not feel much of anything when you start on a common low starter dose, But then again you may. If you feel better and symptoms get better then you will have your answer at least in part.
Finsing a Dr to treat you with a clinical trial of thyroid is the TRICK. As the medical schools tell Drs to use TSH which your result is "perfect" in their book at the #1 thing. Then if they are forced they are told to look to see if the resuults for FT4 and FT3 are "within range" which again yours are. So even though you present yourself with symptoms that would narrow down to "HYPO", the Dr's are taught to go with the numbers and not how you feel. Which is NOT "practicing" medicine. Rather it is simply rote book reaction.
My wife has had to try for 10 years and MULTIPLE Dr's to finally find one who will treat her by listening to her symptoms and use blood labs as an aid but NOT the sole determining factor in prescribing dosage. SO I wish you well to find a Dr wililing to do that!
The tests above do NOT indicate whether or not the tests you have had done are for FREE T4 and FREE T3 or whether they are both "total"/ Total tests are now outdated and are of little value.
But the rule of thumb are to have BOTH of the following:
1) Free T4 to be in the MIDDLE of the range if not a bit HIGHER. That is 50% of the range. ASSUMING your tests were indeed Free T4 (as the reference range is consistent whith what we normally see for free T4) the result is only 28%. WELL below the rule of thumb of 50% or more
AND- That means in addition
2) Free T3 to be between 50% and 67% of the range (upper half to upper 1/3 of the range). Your calculation comes out at measly 18.4 %. A FAR cry from the rule of thumb 50% or more. And most people seem to need closer to the upper 67%.
So what we have here is the classic conundrum. YOu have all the symtpoms that are consistent with Hypo. Yet your lab tests are all within the "normal" range. However the facts are that people often do not feel well with your labs and feel better when you add thyroid medication.
In addition. The B-12 tests and ranges are woefully inadequate. Most Eurpoean and other countries the lower part of the range does not begin until 500. And you stated that you are now only innthe 500's. Many people do not feel well until they are closter to the very upper range, certainly over 700 and many people need to be 900 or so. So I think there is room for further supplementing that can go on.
I think you need to talk to your Dr with all your symptoms and how consisten they ALL are with Hypo. And ask to start on a trial dose of t hyroid medication. And then retest and see how you feel. YOur levels are low enough that you may not feel much of anything when you start on a common low starter dose, But then again you may. If you feel better and symptoms get better then you will have your answer at least in part.
Finsing a Dr to treat you with a clinical trial of thyroid is the TRICK. As the medical schools tell Drs to use TSH which your result is "perfect" in their book at the #1 thing. Then if they are forced they are told to look to see if the resuults for FT4 and FT3 are "within range" which again yours are. So even though you present yourself with symptoms that would narrow down to "HYPO", the Dr's are taught to go with the numbers and not how you feel. Which is NOT "practicing" medicine. Rather it is simply rote book reaction.
My wife has had to try for 10 years and MULTIPLE Dr's to finally find one who will treat her by listening to her symptoms and use blood labs as an aid but NOT the sole determining factor in prescribing dosage. SO I wish you well to find a Dr wililing to do that!
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