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Help!! Thyroid/Adrenal/Endocrine????
I have been through 10 years of a downward slide and feel like I'm reaching the bottom.
Major symptoms: Light headed, floating/drugged feeling, memory loss, EXTREME fatigue and reaching a point where I can't function any longer. Symptoms started 10 years ago with tinitus (ringing in th ears) both ears and it is a really bad case of it. It started one day and I've had it 24x7 ever since. That kicked off my medical mystery. the fatigue/drugged feeling followed soon after.
What I've done: Every test imaginable ; MRI of the brain ; normal ; Endocrinologist (10 minutes and a blood test) I'm normal ; I do have Low T ; My LH recently tested was 6.5 ; FSH was 11.5 ; Prolactin 9.9
I have a couple of doctors over the past 10 years want to treat me for depression which I refused. The only thing I'm depressed about is not finding an answer. Been to 20+ doctors and I'm lost now. There is Thyroid disorders in my family (Hypo) and I feel that I could have that while testing normal. But how do I find someone to treat it if it is "normal?"
Open to any ideas. I don't know what to do and at 52, I feel like I'm done. I have had xrays, MRIs and everything I could push for. Went to a Neurologist at the University of Pennsylvania who spent 10 minutes doing motor skills testing and said I must be depressed. I am now.
Major symptoms: Light headed, floating/drugged feeling, memory loss, EXTREME fatigue and reaching a point where I can't function any longer. Symptoms started 10 years ago with tinitus (ringing in th ears) both ears and it is a really bad case of it. It started one day and I've had it 24x7 ever since. That kicked off my medical mystery. the fatigue/drugged feeling followed soon after.
What I've done: Every test imaginable ; MRI of the brain ; normal ; Endocrinologist (10 minutes and a blood test) I'm normal ; I do have Low T ; My LH recently tested was 6.5 ; FSH was 11.5 ; Prolactin 9.9
I have a couple of doctors over the past 10 years want to treat me for depression which I refused. The only thing I'm depressed about is not finding an answer. Been to 20+ doctors and I'm lost now. There is Thyroid disorders in my family (Hypo) and I feel that I could have that while testing normal. But how do I find someone to treat it if it is "normal?"
Open to any ideas. I don't know what to do and at 52, I feel like I'm done. I have had xrays, MRIs and everything I could push for. Went to a Neurologist at the University of Pennsylvania who spent 10 minutes doing motor skills testing and said I must be depressed. I am now.
There are all kinds of different medications really. What works for one person may not work on another. But I can give a short primer I guess.
There are three groups I guess you could call them of thyroid meds.
1) Synthetic T4 medication. These go by various names but the most common are Synthyroid and Levothyroxine. This is a man made synthetic exact replica of the T4 hormone molecule. There are various generic brands and manufacturers. Each manufacturer uses different dyes and fillers and binders in addition to the T4 hormone. Some people are sensitive or allergic to the fillers or dyes so they may have better luck with absorption and tolerance even switching between manufacturers. There is also a liquid gel cap T4 medication known as Tirosint. This has no dyes or fillers and people who are sensitive to the other T4 meds have had good luck with this drug for the most part.
Synthetic T4 medication only is the most common or most frequently prescribed medication by Dr's. Starting doses are usually about 25 mcg or maybe 50 mcg.
Because T4 is a storage hormone, it takes about 6 weeks for the T4 to stabilize in your bloodstream. So retesting in 6 weeks or so and possible adjustments to medication may be needed to slowly build up to the level that may work for you.
The T3 or Free T3 in your body is reliant upon the proper conversion of the T4 into free T3. Some people have some difficulties in the conversion process. In those people, a source of T3 is needed. This can be achieved either by switching to NDT or by adding in addition to the synthetic T4 medication a synthetic T3 medication. The advantage to using both synthetics is the ability to really tweak the dosage of each T4 and T3 more precisely. NDT is set and to change the T4 and T3 in the blood levels in smaller amounts some people need to take either a small synthetic T4 or synthetic T3 depending upon what they need.
2) Natural Dissected Thyroid (NDT) - there again are several manufacturers of these. The most common in the US are Armour and Nature Thyroid and in Canada EFRA.
NDT is made from pig thyroid. This medicine has BOTH T4 AND a T3 component. NDT has significantly more T3 in it than what is normally produced in a human thyroid. Some people who need that extra T3 do extremely well on NDT.
NDT has been used for over 100 years. Many modern Dr's will not prescribe NDT. They believe the new man made synthetics are more precise and accurate dosages. However people have been and continue to find NDT to work extremely well for many people just as it has for over 100 years. Also there is some evidence that NDT has had less recalls due to potency issues than have the man made synthetics.
While NDT has the word "natural" in it. Don't be completely fooled. This is still a pharmaceutical made and manipulated manufactured process. There are fillers and binders within the pill which I believe is used to help provide consistency in the batches to help assure a consistent potency.
T3 is fast acting being available immediately for use in the body. As a result many people find taking NDT half in the morning and half in the early afternoon to work out well for them. Others can take the whole thing all at once. Again everyone is different.
3) Synthetic T3. Again this is a man made synthetic replica of the T3 hormone. Just like the synthetic T4 it to has binders and fillers and thus some people have had some sensitivities to it. The common name associated with synthetic T3 is called Cytomel. I believe there are also generic versions and manufactures of T3 as well.
This medicine is usually used when the FT4 blood levels are sufficient (usually mid range or above) yet the FT3 levels remain lower in the range. This would suggest a conversion issue and a T3 medication might make sense to add.
T3 is very short lived in the bloodstream. It is available immediately to be used by your body. Therefore when adjusting T3 levels you can be tested in a few days or a week rather than the T4 medications which takes about 6 weeks to stabilize.
Because of the fast acting nature of T3, many people will take the medicine twice a day. Once in the morning and once in the early afternoon. Taking it too late can make it hard to get to sleep.
Common starting doses of a T3 medicine are 5 mcg or so. because of its near immediate affect, many people have to start out very slowly on this medication or people report having trouble. Even if splitting the 5 mcg in two and taking it twice a day. It seems many people end up not more than about 15 mcg after working up slowly. Again every person is different and some only need a small boost and others need larger boost of T3.
Finally: In combination
The T3 or Free T3 in your body is reliant upon the proper conversion of the T4 into free T3. Some people who are taking T4 only medication have some difficulties in the conversion process. In those people, a source of T3 is needed above and beyond the T4 medication. This can be achieved either by switching to NDT or by adding in addition to the synthetic T4 medication a synthetic T3 medication. The advantage to using both synthetics is the ability to really tweak the dosage of each T4 and T3 more precisely. NDT has a set T4/T3 ratio and to change the T4 or T3 in the blood levels in smaller amounts, some people need to take either a small synthetic T4 or synthetic T3 in addition to the NDT depending upon what they need. Again every one is different.
So you can now see that besides the three major groups, you can also use a combination of one or more of each broad group.
Again the bottom line is finding out what works for YOU. In a lot of the cases simply taking the straight T4 med works once its dosage is adjusted. Other people have a more difficult time with sensitivities of fillers and their bodies need very precise levels balanced in order to feel well.
There are three groups I guess you could call them of thyroid meds.
1) Synthetic T4 medication. These go by various names but the most common are Synthyroid and Levothyroxine. This is a man made synthetic exact replica of the T4 hormone molecule. There are various generic brands and manufacturers. Each manufacturer uses different dyes and fillers and binders in addition to the T4 hormone. Some people are sensitive or allergic to the fillers or dyes so they may have better luck with absorption and tolerance even switching between manufacturers. There is also a liquid gel cap T4 medication known as Tirosint. This has no dyes or fillers and people who are sensitive to the other T4 meds have had good luck with this drug for the most part.
Synthetic T4 medication only is the most common or most frequently prescribed medication by Dr's. Starting doses are usually about 25 mcg or maybe 50 mcg.
Because T4 is a storage hormone, it takes about 6 weeks for the T4 to stabilize in your bloodstream. So retesting in 6 weeks or so and possible adjustments to medication may be needed to slowly build up to the level that may work for you.
The T3 or Free T3 in your body is reliant upon the proper conversion of the T4 into free T3. Some people have some difficulties in the conversion process. In those people, a source of T3 is needed. This can be achieved either by switching to NDT or by adding in addition to the synthetic T4 medication a synthetic T3 medication. The advantage to using both synthetics is the ability to really tweak the dosage of each T4 and T3 more precisely. NDT is set and to change the T4 and T3 in the blood levels in smaller amounts some people need to take either a small synthetic T4 or synthetic T3 depending upon what they need.
2) Natural Dissected Thyroid (NDT) - there again are several manufacturers of these. The most common in the US are Armour and Nature Thyroid and in Canada EFRA.
NDT is made from pig thyroid. This medicine has BOTH T4 AND a T3 component. NDT has significantly more T3 in it than what is normally produced in a human thyroid. Some people who need that extra T3 do extremely well on NDT.
NDT has been used for over 100 years. Many modern Dr's will not prescribe NDT. They believe the new man made synthetics are more precise and accurate dosages. However people have been and continue to find NDT to work extremely well for many people just as it has for over 100 years. Also there is some evidence that NDT has had less recalls due to potency issues than have the man made synthetics.
While NDT has the word "natural" in it. Don't be completely fooled. This is still a pharmaceutical made and manipulated manufactured process. There are fillers and binders within the pill which I believe is used to help provide consistency in the batches to help assure a consistent potency.
T3 is fast acting being available immediately for use in the body. As a result many people find taking NDT half in the morning and half in the early afternoon to work out well for them. Others can take the whole thing all at once. Again everyone is different.
3) Synthetic T3. Again this is a man made synthetic replica of the T3 hormone. Just like the synthetic T4 it to has binders and fillers and thus some people have had some sensitivities to it. The common name associated with synthetic T3 is called Cytomel. I believe there are also generic versions and manufactures of T3 as well.
This medicine is usually used when the FT4 blood levels are sufficient (usually mid range or above) yet the FT3 levels remain lower in the range. This would suggest a conversion issue and a T3 medication might make sense to add.
T3 is very short lived in the bloodstream. It is available immediately to be used by your body. Therefore when adjusting T3 levels you can be tested in a few days or a week rather than the T4 medications which takes about 6 weeks to stabilize.
Because of the fast acting nature of T3, many people will take the medicine twice a day. Once in the morning and once in the early afternoon. Taking it too late can make it hard to get to sleep.
Common starting doses of a T3 medicine are 5 mcg or so. because of its near immediate affect, many people have to start out very slowly on this medication or people report having trouble. Even if splitting the 5 mcg in two and taking it twice a day. It seems many people end up not more than about 15 mcg after working up slowly. Again every person is different and some only need a small boost and others need larger boost of T3.
Finally: In combination
The T3 or Free T3 in your body is reliant upon the proper conversion of the T4 into free T3. Some people who are taking T4 only medication have some difficulties in the conversion process. In those people, a source of T3 is needed above and beyond the T4 medication. This can be achieved either by switching to NDT or by adding in addition to the synthetic T4 medication a synthetic T3 medication. The advantage to using both synthetics is the ability to really tweak the dosage of each T4 and T3 more precisely. NDT has a set T4/T3 ratio and to change the T4 or T3 in the blood levels in smaller amounts, some people need to take either a small synthetic T4 or synthetic T3 in addition to the NDT depending upon what they need. Again every one is different.
So you can now see that besides the three major groups, you can also use a combination of one or more of each broad group.
Again the bottom line is finding out what works for YOU. In a lot of the cases simply taking the straight T4 med works once its dosage is adjusted. Other people have a more difficult time with sensitivities of fillers and their bodies need very precise levels balanced in order to feel well.
Perhaps asking for more tests like the TPOAb and the TgAb to check for Hastimoto disease along with your levels of FREE T3 and FreeT4
Vitamin D test too.
Get a good picture of what you need and where to go.
Mia
Do you know what the medications are to fix this, if this is what I have? Also, do you know what the side effects would be to a trial of the medication if I do not have this condition?
Thanks for the input. My stumbling on this website may end up being my solution. I have an appointment with my primary today and I'm going to take as much ammunition with me as I can and ask him to start me on a trial of the thyroid medications. The endocrinologist I have seen are absolutely worthless. Completely incapable of looking beyond "normal" ranges.
Right now I'm on no meds. Vitamins only. B12, Niacin, some mix for the thyroid .... I never feel any difference if I take vitamins or not, eat well or not ... nothings seems to make any difference. I follow a routine now that is just common sense as far as the vits and diet go. Beyond that, I'm on nothing.
Thanks so much for taking the time to respond.
Right now I'm on no meds. Vitamins only. B12, Niacin, some mix for the thyroid .... I never feel any difference if I take vitamins or not, eat well or not ... nothings seems to make any difference. I follow a routine now that is just common sense as far as the vits and diet go. Beyond that, I'm on nothing.
Thanks so much for taking the time to respond.
I also went through years of medical testing much like you have done, was also told I must just be "depressed" and put on and off every crappy psychotropic known to man, all of which had radical side effects and made me worse or didn't help. Any depression I DID have lifted immediately when I was put on T3 in addition to T4, and my last shrink blamed all my depressed and mentally confused psychiatric symptoms... which at the end included terrible panic attacks....on hypothyroidism and the terrible medical care I had received. T3 is the hormone that carries seratonin across the synapses. If you don't have enough thyroid hormones to do the job, you will be depressed no matter how many mystery drugs you are given.
Tinnitus was one of my first symptoms, and I use it now to let me know when my meds are too low. Another self-diagnostic symptom for me is that I start reversing letters while typing, a sort of dyslexia, which goes away when I am on the right dose of medication. As soon as my medication is too low, the tinnitus comes back, and I have read that many members have the same experience.
I have nothing to add to the excellent comments you have already received except that our members will be able to be more accurate in their advice if you post your most recent blood tests including the ranges your lab uses, which can vary from lab to lab, and also post what kind of thyroid medication and what dose you are taking and for how long.
The symptoms you have are all very typical of hypothyroidism.
Tinnitus was one of my first symptoms, and I use it now to let me know when my meds are too low. Another self-diagnostic symptom for me is that I start reversing letters while typing, a sort of dyslexia, which goes away when I am on the right dose of medication. As soon as my medication is too low, the tinnitus comes back, and I have read that many members have the same experience.
I have nothing to add to the excellent comments you have already received except that our members will be able to be more accurate in their advice if you post your most recent blood tests including the ranges your lab uses, which can vary from lab to lab, and also post what kind of thyroid medication and what dose you are taking and for how long.
The symptoms you have are all very typical of hypothyroidism.
Testing "normal" for Thyroid means almost NOTHING!
They call you "normal" if you fall "somewhere" within the normal ranges. The problem is the ranges are FAR, FAR too broad. The ranges are made up including people who are low thyroid and that fact swings the reference range too far down.
They symptoms you list are all consistent with being low thyroid.
First off you need to be tested for more than just TSH. TSH is a screening tool and a pretty poor one at that. it measures the pituitary gland response and is NOT a direct measure of the thyroid hormone in your blood.
You need to be tested for both of the "free" hormones. The FREE T4 and FREE T3. These are hormone that is "free" from being bound to a protein. Onece the hormone is tied to a protein it becomes worthless as your body can't use it. The body ONLY uses the free hormones.
The Free T4 is a storage hormone. It remains in your blood until called upon. Then it converts (mostly in the liver) into T3. Again some of this T3 attaches to a protein and becomes useless. The body's cells ONLY use the Free T3 hormone at the cellular level. This is why it is so important to test for the "free T3 and Free T4"
If you do not ask SPECIFICALLY for "free" hormones they will likely test for "total" and that counts BOTH the free and bound hormones. And since the bound ones are useless, a "total" test doesn't tell you much and is outdated and of little value.
Finally MANY people find that in order to feel well. They need to have BOTh of the following to be true:
1) Free T4 in the MIDDLE of the range or slightly higher
AND (that means in addition to)
2) Free T3 to be in the UPPER 1/3 of the range.
Notice that both of these are substantially above the bottom of the range. Many people will be told they are "normal" and they will be below mid range or the bottom of the range and written off that you have a thyroid problem. NOTHING could be further from the truth.
Also when getting tested it makes sense to get the following additional tests beyond the two free hormones. These are Vitamin D, B-12, Iron & Ferritin. Many people who are low thyroid also are low on these as well and these also cause fatigue symptoms. be aware that the ranges for these also are extremely wide and many people again need to have there results to be above mid range if not towards the top end on D, and B-12 especially.
They call you "normal" if you fall "somewhere" within the normal ranges. The problem is the ranges are FAR, FAR too broad. The ranges are made up including people who are low thyroid and that fact swings the reference range too far down.
They symptoms you list are all consistent with being low thyroid.
First off you need to be tested for more than just TSH. TSH is a screening tool and a pretty poor one at that. it measures the pituitary gland response and is NOT a direct measure of the thyroid hormone in your blood.
You need to be tested for both of the "free" hormones. The FREE T4 and FREE T3. These are hormone that is "free" from being bound to a protein. Onece the hormone is tied to a protein it becomes worthless as your body can't use it. The body ONLY uses the free hormones.
The Free T4 is a storage hormone. It remains in your blood until called upon. Then it converts (mostly in the liver) into T3. Again some of this T3 attaches to a protein and becomes useless. The body's cells ONLY use the Free T3 hormone at the cellular level. This is why it is so important to test for the "free T3 and Free T4"
If you do not ask SPECIFICALLY for "free" hormones they will likely test for "total" and that counts BOTH the free and bound hormones. And since the bound ones are useless, a "total" test doesn't tell you much and is outdated and of little value.
Finally MANY people find that in order to feel well. They need to have BOTh of the following to be true:
1) Free T4 in the MIDDLE of the range or slightly higher
AND (that means in addition to)
2) Free T3 to be in the UPPER 1/3 of the range.
Notice that both of these are substantially above the bottom of the range. Many people will be told they are "normal" and they will be below mid range or the bottom of the range and written off that you have a thyroid problem. NOTHING could be further from the truth.
Also when getting tested it makes sense to get the following additional tests beyond the two free hormones. These are Vitamin D, B-12, Iron & Ferritin. Many people who are low thyroid also are low on these as well and these also cause fatigue symptoms. be aware that the ranges for these also are extremely wide and many people again need to have there results to be above mid range if not towards the top end on D, and B-12 especially.
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