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TSH Level will not go down, PLEASE HELP!
I was diagnosed in March 09 with Hashimoto's/Hypothyroidism. At that point my TSH was 39 they put me on 100mcg of Synthroid, 4 weeks later when they checked my TSH it was up to 45 so they up'd my Synthroid to 125mcg, 4 weeks later up again to 56 so they up'd me to 150mcg, I just went again for my level check but they did not call me with the level of TSH just told me they were up'ing my Synthroid to 175mcg. When your levels are suppose to be under 1 and they are as high as mine and keep rising is there something else I can do? Something my doctor is not doing?
In March they did an Ultrasound on the Thyroid and found 2 nodules. I have a repeat ultrasound on July 14th to see if there is any change in the nodules.
This all started January 2nd 2009. I woke up that morning to a collapsed lung. Docs did 2 surgeries on that. Even after I felt I should have felt better I didn't. So I kept going to different doctors to see what was wrong with me. Finally in March I had a diagnosis, however I have not gotten to a point of feeling well yet.
Some of my symptoms include disgusting skin. Almost like a teenager going through puberty. The pimples that I get are all over my body and they are big and sore, almost like burns. I have wicked body aches especially in my wrists, ankles and top of my back. I was diagnosed with Carpal Tunnel in 2006 so I think the Hashi's is probably just making that worse. I experience the memory loss, constipation, daily swelling, weakness, fatigue, anxiety, mood swings, loss of sex drive, sweating. I've also gained close to 50lbs since January.
I am currently on 300mg of Lithium Carbonate, 200mg of Zoloft and 175mcg of Synthroid.
Is there ANYTHING more that I should be doing or telling the doctors to do to make me feel better?? I am a 29 year old mother of 2, a 10 year old daughter and a 3 year old son. I spend my weekends on the couch because i'm to exhausted from the work week to do anything. It ***** and I hate living this way. My fiancee thinks I am sleeping with someone else because I have no sex drive. He doesn't understand that it's just part of the sickness. Alot of people don't understand what i'm going through. They think i'm lazy and inconsiderate.
ANY thoughts will help.
In March they did an Ultrasound on the Thyroid and found 2 nodules. I have a repeat ultrasound on July 14th to see if there is any change in the nodules.
This all started January 2nd 2009. I woke up that morning to a collapsed lung. Docs did 2 surgeries on that. Even after I felt I should have felt better I didn't. So I kept going to different doctors to see what was wrong with me. Finally in March I had a diagnosis, however I have not gotten to a point of feeling well yet.
Some of my symptoms include disgusting skin. Almost like a teenager going through puberty. The pimples that I get are all over my body and they are big and sore, almost like burns. I have wicked body aches especially in my wrists, ankles and top of my back. I was diagnosed with Carpal Tunnel in 2006 so I think the Hashi's is probably just making that worse. I experience the memory loss, constipation, daily swelling, weakness, fatigue, anxiety, mood swings, loss of sex drive, sweating. I've also gained close to 50lbs since January.
I am currently on 300mg of Lithium Carbonate, 200mg of Zoloft and 175mcg of Synthroid.
Is there ANYTHING more that I should be doing or telling the doctors to do to make me feel better?? I am a 29 year old mother of 2, a 10 year old daughter and a 3 year old son. I spend my weekends on the couch because i'm to exhausted from the work week to do anything. It ***** and I hate living this way. My fiancee thinks I am sleeping with someone else because I have no sex drive. He doesn't understand that it's just part of the sickness. Alot of people don't understand what i'm going through. They think i'm lazy and inconsiderate.
ANY thoughts will help.
COMMUNITY LEADER
How old is your son? Children run TSH higher than adults do.
Is the doctor ordering Free T3 and Free T4? If he's just ordering T3 and T4, you're getting Total T3 and Total T4, which aren't as useful as the Frees. At any rate, what are the actual levels of the T3 and T4, with the reference ranges, which vary lab to lab and have to come from your son's own report?
TSH is pituitary hormone and doesn't necessarily correlate with actual thyroid hormone levels... We have some members who always run a high TSH and don't have symptoms of hypothyroidism...
That said, if your son has symptoms of hypothyroidism, there is no upper limit of Synthroid your son can be put on to alleviate symptoms.
Is the doctor ordering Free T3 and Free T4? If he's just ordering T3 and T4, you're getting Total T3 and Total T4, which aren't as useful as the Frees. At any rate, what are the actual levels of the T3 and T4, with the reference ranges, which vary lab to lab and have to come from your son's own report?
TSH is pituitary hormone and doesn't necessarily correlate with actual thyroid hormone levels... We have some members who always run a high TSH and don't have symptoms of hypothyroidism...
That said, if your son has symptoms of hypothyroidism, there is no upper limit of Synthroid your son can be put on to alleviate symptoms.
My son had a TSH level of 14, when the doctor put him on synthyroid his levels are going up. He is on .1 synthyroid and his TSH is now 78. What could cause thing. I requested that the doctor do a T3 and T4. T3 is normal but T4 is still below level. Is it wise for the doctor to continue to increase med?
WOW!
I just read up about the TSC. I have already had the spontaneous pnemothorax. I've never had seizures. I have the discoloration on my skin. Seems to only be on my arms. I have the pimples as well. I see a dermatologist for this, she keeps giving me acne cream which doesn't work.
I will definetly bring this to the attention of my neurologist.
Thanks!!
I just read up about the TSC. I have already had the spontaneous pnemothorax. I've never had seizures. I have the discoloration on my skin. Seems to only be on my arms. I have the pimples as well. I see a dermatologist for this, she keeps giving me acne cream which doesn't work.
I will definetly bring this to the attention of my neurologist.
Thanks!!
I hate to specualte but has your Neurologist ever mentioned ......Tuberous Sclerosis.
This is NOT life threatening and is a defunct hereditary genen from birth.
It is a non-cancerous tumour normally.
The cause is a faulty gene.
Tuberous sclerosis is caused by one of two faulty genes. In around eight out of 10 cases, the gene spontaneously mutates within the developing baby, for reasons unknown. This gene may also be inherited, and a person with the condition has a 50 per cent chance of passing tuberous sclerosis onto each of their children. The faulty gene on chromosome 9 was located in 1997, and researchers hope to develop a genetic test for the condition sometime in the future.
Chromosome 16 is also involved in tuberous sclerosis complex.
But the white 'dot' masses are not cancerous and you will not die from them.
Have you ever had a history of seizures, hyperthyroidism, pigmentation of the skin, growth development?
Ask your neurologist for more information.
Sorry I cant help you more but dont be alarmed as there is no cancer.......the mass is benign and usually treated with medications.
This is NOT life threatening and is a defunct hereditary genen from birth.
It is a non-cancerous tumour normally.
The cause is a faulty gene.
Tuberous sclerosis is caused by one of two faulty genes. In around eight out of 10 cases, the gene spontaneously mutates within the developing baby, for reasons unknown. This gene may also be inherited, and a person with the condition has a 50 per cent chance of passing tuberous sclerosis onto each of their children. The faulty gene on chromosome 9 was located in 1997, and researchers hope to develop a genetic test for the condition sometime in the future.
Chromosome 16 is also involved in tuberous sclerosis complex.
But the white 'dot' masses are not cancerous and you will not die from them.
Have you ever had a history of seizures, hyperthyroidism, pigmentation of the skin, growth development?
Ask your neurologist for more information.
Sorry I cant help you more but dont be alarmed as there is no cancer.......the mass is benign and usually treated with medications.
Thank you ALL so much!! You have given me so much to look in too!
Ok here are my last set of tests that I had done. I will list the abnormal levels with the ref. range.
eGFR MDRD 81.0 L/ >or= 90.0 ML/MIN
A/G 1.212 L/ 1.3-1.8
Lithium < 0.2 L/ 0.6-1.3 MEQ/L
TSH 45.5 H/ 0.4-4.0
My Free T4 was 1.3 Reference is 0.8-1.9NG/DL so that was normal.
My MRI results are as follows:
On the sagittal flair series there are eight dots of high signal intensity in the right frontal white matter. The corpus callosum and the immeditae periventricular white matter are normal. There is no evidence of pathologic enhancement on the axial, sagittal or cornal T1 series with contrast.
There is a benign appearing 1-CM pineal cyst which has no mass effect.
The flow-voids of the major arteries and dural venous sinuses are patent and the ventricles are normal.
The diffusion weighted series which is very sensitive in detecting recent stroke, is normal.
There is a 14-MM retention cyst in the Zygomatic recess of the right maxillary sinus. Otherwise the paranasal sinuses and the mastoid air cells are unremarkable.
Impression:
There are about eight nonenhancing subtle foci of high signal intensity in the right frontal white matter. The immediate perventricular white matter and the corpus callosum are normal. Given the patients age and the concern for Multiple Sclerosis, it is possible that there are small areas of demyelination. No prior brain MRI with which to compare. Long term follow up is advised.
I am on Lithium because my Lithium levels are low. Normally the reaction it would have with the Synthroid is to secrete extra lithium which is not good for you. In my case however, I am low so it wouldn't effect me. At least that is what i'm being told.
Ok here are my last set of tests that I had done. I will list the abnormal levels with the ref. range.
eGFR MDRD 81.0 L/ >or= 90.0 ML/MIN
A/G 1.212 L/ 1.3-1.8
Lithium < 0.2 L/ 0.6-1.3 MEQ/L
TSH 45.5 H/ 0.4-4.0
My Free T4 was 1.3 Reference is 0.8-1.9NG/DL so that was normal.
My MRI results are as follows:
On the sagittal flair series there are eight dots of high signal intensity in the right frontal white matter. The corpus callosum and the immeditae periventricular white matter are normal. There is no evidence of pathologic enhancement on the axial, sagittal or cornal T1 series with contrast.
There is a benign appearing 1-CM pineal cyst which has no mass effect.
The flow-voids of the major arteries and dural venous sinuses are patent and the ventricles are normal.
The diffusion weighted series which is very sensitive in detecting recent stroke, is normal.
There is a 14-MM retention cyst in the Zygomatic recess of the right maxillary sinus. Otherwise the paranasal sinuses and the mastoid air cells are unremarkable.
Impression:
There are about eight nonenhancing subtle foci of high signal intensity in the right frontal white matter. The immediate perventricular white matter and the corpus callosum are normal. Given the patients age and the concern for Multiple Sclerosis, it is possible that there are small areas of demyelination. No prior brain MRI with which to compare. Long term follow up is advised.
I am on Lithium because my Lithium levels are low. Normally the reaction it would have with the Synthroid is to secrete extra lithium which is not good for you. In my case however, I am low so it wouldn't effect me. At least that is what i'm being told.
Usually Lithium is out of your body within 5-7 days after you stop taking it.
As for the Docs saying no reaction...thats not true and if you tell your Doc to look it up on MIMS, you will find that it does in fact react with Synthroid as it is a receptor blocker.
Do as goolarra says and get the FT3, FT4 done and also antibody testing.
if there are nodules, then there is bound to be disruption with your thyroid levels.
And as for the sexual libido...that is one thing that disappeared with me when I had RAI and to be honest, I dont think I wouldve had the energy to 'play up' lol.
All I wanted at that time was a good nights sleep lol :)
By the way...the libido returns but ask for your female hormones to be done too as most times, your estrogen will be low.
The thyroid is a very powerful organ.....dont underestimate it lol.
.
As for the Docs saying no reaction...thats not true and if you tell your Doc to look it up on MIMS, you will find that it does in fact react with Synthroid as it is a receptor blocker.
Do as goolarra says and get the FT3, FT4 done and also antibody testing.
if there are nodules, then there is bound to be disruption with your thyroid levels.
And as for the sexual libido...that is one thing that disappeared with me when I had RAI and to be honest, I dont think I wouldve had the energy to 'play up' lol.
All I wanted at that time was a good nights sleep lol :)
By the way...the libido returns but ask for your female hormones to be done too as most times, your estrogen will be low.
The thyroid is a very powerful organ.....dont underestimate it lol.
.
Crystal,
When I read that your TSH levels were that high my first thought was a pituitary lesion/ adenoma that is secreting.... meaning that it might be producing the TSH hormone making it look as high as it is. Then later when i read that you have 8 lesions, i felt even more strongly that there is a correlation. You could be feeling VERY bad from your lesions.... they can alter MANY of your hormones that regulate bodily functions. Try posting on the brain/pituitary tumors board and asking there. It will be important as others have said above to know what your FT4 and FT3 are...... But do NOT discount your lesions as possibly being hormone secreting!
What did your doctor say about your lesions? how large are they? where are they? Are they pituitary adenomas? if so, are they microadenomas or macro? Do you have the paper from your MRI with the "findings"?????
PS I'm not a Dr. but it just seems it's a good idea to ask your Dr. about. TSH secreting lesions are rare, but it's worth investigating since you already have had an MRI showing lesions!!!! Maybe you should look into seeing a Neruo-Endocronologist which will specialize in pituitary lesions and adenomas and how it affects the whole endocrine system including the thyroid....
Please let us know how everything goes!
When I read that your TSH levels were that high my first thought was a pituitary lesion/ adenoma that is secreting.... meaning that it might be producing the TSH hormone making it look as high as it is. Then later when i read that you have 8 lesions, i felt even more strongly that there is a correlation. You could be feeling VERY bad from your lesions.... they can alter MANY of your hormones that regulate bodily functions. Try posting on the brain/pituitary tumors board and asking there. It will be important as others have said above to know what your FT4 and FT3 are...... But do NOT discount your lesions as possibly being hormone secreting!
What did your doctor say about your lesions? how large are they? where are they? Are they pituitary adenomas? if so, are they microadenomas or macro? Do you have the paper from your MRI with the "findings"?????
PS I'm not a Dr. but it just seems it's a good idea to ask your Dr. about. TSH secreting lesions are rare, but it's worth investigating since you already have had an MRI showing lesions!!!! Maybe you should look into seeing a Neruo-Endocronologist which will specialize in pituitary lesions and adenomas and how it affects the whole endocrine system including the thyroid....
Please let us know how everything goes!
I have done a quick read on the net and discovered that the lithium may have actually caused your TSH to go up. Yes, Synthroid does interact with the Lithium. So your TSH would go up yet again! So you have a double headed problem. You may have to ask for some thing else to help you instead of Lithium.
I have Hashi's too and I had that body acne you mentioned. I never had a single pimple in my life till then in my 30's! I have scars on my upper back, chest, and face from them. I hated them they were so sore!
I would be going back to your doctor as soon as possible and get them to re do your meds for something else that does not interfere and that you can tolerate.
I have Hashi's too and I had that body acne you mentioned. I never had a single pimple in my life till then in my 30's! I have scars on my upper back, chest, and face from them. I hated them they were so sore!
I would be going back to your doctor as soon as possible and get them to re do your meds for something else that does not interfere and that you can tolerate.
Pituitary issues include pituitary tumors and pituitary resistance to thyroid hormone, (PRTH - the pituitary doesn't recognize the T3 and T4 levels in your body and keeps producing TSH even though your body doesn't need any more thyroid hormone), just to mention two. Another issue is general resistance to thyroid hormone where you need massive doses of T4 meds because your cells are resistant to it. I have both Hashi's and PRTH.
Smilerdeb knows what she's talking about...if she says lithium interacts with T4 meds, I'd believe her in a heartbeat. The time separation is good on the Symthroid and lithium, but I don't know if there is still interaction. Deb?
Smilerdeb knows what she's talking about...if she says lithium interacts with T4 meds, I'd believe her in a heartbeat. The time separation is good on the Symthroid and lithium, but I don't know if there is still interaction. Deb?
"As for your Fiancee......well, if he thinks that then there is no trust.
No trust, no love ........in my books.
Worry about yourself first, you have been through a lot without the added stress of his insecurities."
I 100% agree with you. But an issue for another forum I assume, LOL
I just wish there was something I could do to show him that I am sick, that this is not just a game so that I don't have to please him. But I think he is very ignorant to the sickness as well, he has been to the thousand doc appointments, he's been with me every time I head to the ER because the swelling or rash, he was there when my lung collapsed. He has seen all the results ON PAPER. So ignorance is what I blame it on.
No trust, no love ........in my books.
Worry about yourself first, you have been through a lot without the added stress of his insecurities."
I 100% agree with you. But an issue for another forum I assume, LOL
I just wish there was something I could do to show him that I am sick, that this is not just a game so that I don't have to please him. But I think he is very ignorant to the sickness as well, he has been to the thousand doc appointments, he's been with me every time I head to the ER because the swelling or rash, he was there when my lung collapsed. He has seen all the results ON PAPER. So ignorance is what I blame it on.
Thanks!
What is a pituitary issue? Is this something in addition to the Hashi's? I should mention that I also had an MRI done of the brain and spine to check and see if I had MS. The brain MRI came back with 2 cysts and 8 lesions. That also was in March. Last week I had the repeat done and I will get the results on the 21st with my neurologist.
I don't think my endo has tested my Free T3 or T4 so when I go back to him next week I will request that. Is there any other testing that I should request, or questions I should be asking? I'm still so clueless.
They have already checked to see if the medications that I am on would interfere with each other and they say negative.
I take my Synthroid first thing in the AM when I wake up. I take my Zoloft with it. The only thing I drink is the water that I need to swallow it, and I do not eat for a few hours after taking it. I take my Lithium right before bed.
What is a pituitary issue? Is this something in addition to the Hashi's? I should mention that I also had an MRI done of the brain and spine to check and see if I had MS. The brain MRI came back with 2 cysts and 8 lesions. That also was in March. Last week I had the repeat done and I will get the results on the 21st with my neurologist.
I don't think my endo has tested my Free T3 or T4 so when I go back to him next week I will request that. Is there any other testing that I should request, or questions I should be asking? I'm still so clueless.
They have already checked to see if the medications that I am on would interfere with each other and they say negative.
I take my Synthroid first thing in the AM when I wake up. I take my Zoloft with it. The only thing I drink is the water that I need to swallow it, and I do not eat for a few hours after taking it. I take my Lithium right before bed.
Lithium interacts with all T4 meds.A lot of bi-polar meds interatc with a T4 med.
It may be the case that your Synthroid is NOT converting to T3..hence the high TSH.
Goolarra is right....get the Free T's done and others can help you too.
As for your Fiancee......well, if he thinks that then there is no trust.
No trust, no love ........in my books.
Worry about yourself first, you have been through a lot without the added stress of his insecurities.
It may be the case that your Synthroid is NOT converting to T3..hence the high TSH.
Goolarra is right....get the Free T's done and others can help you too.
As for your Fiancee......well, if he thinks that then there is no trust.
No trust, no love ........in my books.
Worry about yourself first, you have been through a lot without the added stress of his insecurities.
First thought...you are not lazy and inconsiderate...it's definitely the disease.
In addition to TSH, your doctor should be checking your free T3 (FT3) and free T4 (FT4) levels. T3 and T4 are the actual thyroid hormones and give a much better indication of your thyroid status than TSH (a pituitary hormone). It's very important that you make sure your doctor is testing these. If he isn't, ask him for them ASAP.
When you get the results of FT3 and FT4, also get the reference ranges since they are specific to your lab. You can post them here for members to comment on if you'd like.
Many things can influence TSH besides your thyroid. It is very distantly removed from thyroid function and often unreliable as an indicator of thyroid status.
You might have a pituitary issue. I do, and my TSH just will not go down very far. I have to be treated based on FT3 and FT4 and symptoms. TSH is out the window.
I don't know how the other meds you're on might interact with Synthroid. You can google the drugs and interactions to see if something might be fighting with the other.
Tell your fiancee that you WISH you could get up the energy to have an affair! :-)
When do you take your Synthroid and your other meds? Do you make sure to take Synthroid on an empty stomach and not eat or drink for the next 30-60 minutes?
In addition to TSH, your doctor should be checking your free T3 (FT3) and free T4 (FT4) levels. T3 and T4 are the actual thyroid hormones and give a much better indication of your thyroid status than TSH (a pituitary hormone). It's very important that you make sure your doctor is testing these. If he isn't, ask him for them ASAP.
When you get the results of FT3 and FT4, also get the reference ranges since they are specific to your lab. You can post them here for members to comment on if you'd like.
Many things can influence TSH besides your thyroid. It is very distantly removed from thyroid function and often unreliable as an indicator of thyroid status.
You might have a pituitary issue. I do, and my TSH just will not go down very far. I have to be treated based on FT3 and FT4 and symptoms. TSH is out the window.
I don't know how the other meds you're on might interact with Synthroid. You can google the drugs and interactions to see if something might be fighting with the other.
Tell your fiancee that you WISH you could get up the energy to have an affair! :-)
When do you take your Synthroid and your other meds? Do you make sure to take Synthroid on an empty stomach and not eat or drink for the next 30-60 minutes?
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