Anbody help??

[ANI25]

Hi, i'm new and here and was hoping for some advice.

I am a 24 year old male and i live in England. About 18 months ago i noticed a small bald spot on the side of my head. I didnt think too much of it but very quickly it started was spreading. At this time i also started to feel quite strange, i would 'zone out', get depressed and get very panicky and worked up over nothing. I also noticed i was getting very sensitive to the heat and that my skin was getting very dry which i never had before.

Not knowing what this was i went to see a derm and she discovered that i had an overactive thryoid. I was then referred to a doctor who specialises in thyroid diseases. I had further tests taken and still they came back overactive. This time i was also tested for thyroid perioxidase antibody which was found present, TSH 8.11, T4 9, Perioxidase 842 iu/ml. My doctor was a bit reluctant to start any treatment as he felt the sypmtoms were not very strong at the time and wanted he to be sure.

Two months later i get another and it is still high. TSH 9.73, T4 15.

Two months later i get another blood test and the results come back with only my T4 high and my TSH within normal range. My doctor then told me that i should be okay and if the symtoms get worse or persist then to see again.

Another 3 months later (present) i feel at my worse, i have a had a test for TSH and it again came back normal (i only had tsh test taken as i didnt really understand the rest, but now understand that nobody is really helping so i have to learn it all myself). The hair loss is still happening, i was getting very panicky about 7pm onwards about 3 weeks ago and now im getting it from the moment i wake up till i sleep. I can barley stand because i feel dizzy and like im going to collapse this stops me from working (electrician/policeman) because im a danger to myself. My right eye feels a bit sore and irritable, my muscle ache, i keep losing weight, dry skin, sensitive to heat, soreness of the throat (not the same as a sore throat if you know what i mean) I am quite worried because its starting to get serious and nobody seems to be able to help.

I have an oppointment to see my doctor (thryoid specialist) today and wanted some advice on what to ask for. As i mentioned i was unaware of tests for the thyroid or what they mean but now have learnt and am still learning. Im going to ask for TSH (obviously), T4, T3, perioxidase AB, Thyroglobin AB. Are there any other things i should be looking out for?

Here are the results i had from the numerous tests.

9/4/09
TSH 8.11 (0.25-4)
T4 9
Perioxidase 842 iu/ml

21/5/09
TSH 9.73
T4 15

16/7/09
TSH 2.17
T4 16

12/10/09
TSH 2.14

I will be getting the rest of the ranges today and will be also asking for the rest of my blood test results as this is not all of them.

Has anybody felt anthing like this or had similar results to mine? because at the moment it scares me and i feels like the only one in the world.

Forgot to add. My mum is hypotheroid and got the symptoms around my age.

[Andros]

Hi, i'm new and here and was hoping for some advice.

I am a 24 year old male and i live in England. About 18 months ago i noticed a small bald spot on the side of my head. I didnt think too much of it but very quickly it started was spreading. At this time i also started to feel quite strange, i would 'zone out', get depressed and get very panicky and worked up over nothing. I also noticed i was getting very sensitive to the heat and that my skin was getting very dry which i never had before.

Not knowing what this was i went to see a derm and she discovered that i had an overactive thryoid. I was then referred to a doctor who specialises in thyroid diseases. I had further tests taken and still they came back overactive. This time i was also tested for thyroid perioxidase antibody which was found present, TSH 8.11, T4 9, Perioxidase 842 iu/ml. My doctor was a bit reluctant to start any treatment as he felt the sypmtoms were not very strong at the time and wanted he to be sure.

Two months later i get another and it is still high. TSH 9.73, T4 15.

Two months later i get another blood test and the results come back with only my T4 high and my TSH within normal range. My doctor then told me that i should be okay and if the symtoms get worse or persist then to see again.

Another 3 months later (present) i feel at my worse, i have a had a test for TSH and it again came back normal (i only had tsh test taken as i didnt really understand the rest, but now understand that nobody is really helping so i have to learn it all myself). The hair loss is still happening, i was getting very panicky about 7pm onwards about 3 weeks ago and now im getting it from the moment i wake up till i sleep. I can barley stand because i feel dizzy and like im going to collapse this stops me from working (electrician/policeman) because im a danger to myself. My right eye feels a bit sore and irritable, my muscle ache, i keep losing weight, dry skin, sensitive to heat, soreness of the throat (not the same as a sore throat if you know what i mean) I am quite worried because its starting to get serious and nobody seems to be able to help.

I have an oppointment to see my doctor (thryoid specialist) today and wanted some advice on what to ask for. As i mentioned i was unaware of tests for the thyroid or what they mean but now have learnt and am still learning. Im going to ask for TSH (obviously), T4, T3, perioxidase AB, Thyroglobin AB. Are there any other things i should be looking out for?

Here are the results i had from the numerous tests.

9/4/09
TSH 8.11 (0.25-4)
T4 9
Perioxidase 842 iu/ml

21/5/09
TSH 9.73
T4 15

16/7/09
TSH 2.17
T4 16

12/10/09
TSH 2.14

I will be getting the rest of the ranges today and will be also asking for the rest of my blood test results as this is not all of them.

Has anybody felt anthing like this or had similar results to mine? because at the moment it scares me and i feels like the only one in the world.

Forgot to add. My mum is hypotheroid and got the symptoms around my age.

Wow!!! You sound so ill. Tch!! Well, aside from TSH, FREE T3 and FREE T4 and the TPO and Thyroglobulin you already had, it would be good to get TSI (thyroid stimulating immunoglobulin); you sound like you have or are going hyperthyroid. And they should do an ulta-sound or a radioactive uptake scan of the thyroid. As a matter of fact, I would insist on that.

Let us know how you make out. And thank you for such a very comprehensive medical history. When you get ranges, they will be much appreciated. Can't tell a whole lot w/o them.

And welcome to the board...

[nasdaqphil]

Hello,

My first guess, although fairly rare, is a possibility of a TSH producing pituitary tumor.

It does appear from your Peroxidase that you have Hashi's for sure but with very little information I would steer in the direction of ruling out a small tumor (usually benign).

I am not a doctor but if I saw those labs I would order a contrast pituitary MRI to rule out a tumor. Later, depending on what the MRI revealed, if anything, I would have a thyroid sonogram, TSI (Thyroid Stimulating Immunoglobulins) test done and a RAI uptake scan.

Before going through the expense of an MRI however, I would have all your sex hormones tested. Testosterone, Prolactin, FSH, LH, IGF-1 and Cortisol. Since the pituitary controls all these as well, many times if you do have a pit tumor, these other hormones will be off as well cause the tumor impedes on the areas of the pit that control these along with your TSH.

If the MRI comes back negative, my next guess would be a high TSI which is indicative of Graves'. Since we can almost assume you do have Hashi's, adding Grave's to the mix could produce the type of wildly fluctuating numbers that you produce. On the other hand, it could just be a wicked case of Hashi's.

The logic is as follows. With a small pit tumor, your pit is producing TSH, raising your TSH. Normally when your T4 is high like yours, in short, the pituitary tells the TSH to stop and TSH drops. In your case, your T4 is high and fluctuating but your TSH is not shutting off. Something is telling your pituitary to keep pumping out TSH which creates more T4 - in a nutshell.

I think you also need a more comprehensive set of labs. Free T4, Free T3, Total T4, Total T3, Thyroid Peroxidase Antibodies (TPO Ab) (the test you already had) and Thyroglobulin Antibodies (TG Ab) and Thyroid Stimulating Immunoglobulins (TSI). As I said above, I would also test all your sex hormones.

This is just my opinion. Again, I am not a doctor and thyroid troubles are very difficult to diagnose even for those with medical degrees so I do not want to alarm you. Pit tumors are pretty easy to rule out with an MRI and its one less thing to worry about. They are also fairly common and usually not cancerous. I would simply rule this out quickly because it’s easy to do with a simple MRI but I would want to see the sex hormones and a good full thyroid series done before anything else.

So in order:
1. Free T4, Free T3, Total T4, Total T3, Thyroid Peroxidase Antibodies (TPO Ab) (the test you already had) and Thyroglobulin Antibodies (TG Ab) and Thyroid Stimulating Immunoglobulins (TSI), Cortisol, Prolactin, Testosterone, FSH, LH, IGF-1

See if there’s anything remarkable there

2. If warranted, contrast Pituitary MRI and Thyroid Ultrasound (sonogram)

See if there is a pit tumor or not and see if there is some sort of hot nodule on your thyroid with the sonogram.

3. If warranted based on above, RAI uptake scan and/or thyroid biopsy

See how your thyroid uses iodine (functions) with the uptake scan and see what type of material is within your thyroid gland (graves, hashi’s, cancer, nodule, etc)

4. Proper diagnosis hopefully.

[ANI25]

Thanks for advice guys. It helped.

The appointment with my doctor didnt exactly go great, i will explain. so I went to see the doctor last week and told him of all the things i was feeling.
He didnt seem to care too much, made very little if any notes on what i was saying and dismissed any of the symptoms (check first post) i had as being problems with my thyroid. He simply suggested they could be other things and he didnt belive it was anything to do with my thyroid.

He then decided to check me over. He tested my reflexes (does this help in any way?), blood pressure, heartbeat which he found to be fast, breathing, throat. He also cheked my right eye and found nothing, but at this point i was thinking what the F**k does this guy know about eyes? he's an endocrinologist

After this we discussed my previous results at which time i asked about the high reading of perioxidase i found months earlier. He suggested that many people have these and might not be related to my feeling unwell or thyroid problem. I mentioned that i had been do research on the subject and thats when it kinda changed a bit. Everytime i would suggest something like my right eye, high perioxidase he would actually argue back. I wasnt trying to argue i was just suggesting things which related to the way i was feeling. He then suggested more blood tests, at which point i asked about the more extensive tests that nasdaqphil mentioned an found him arguing back again. In the end i just settled for the tests he wanted carried out which were the Free T3+T4 and the TSH.

This is getting worse and at the moment i am thinking about asking for a referal to see another doctor. He has happily taken my money for 5-7 meetings but has provided me with nothing. He told me months ago that he has never seen the readings i have on any other patient. At that point i should realised that i was always going to be difficult for him to diagnose.

I managed to get the previous results which i had before the first ones i posted and they were:
early/2/09
TSH:0.03
T4: 27

The ranges were 12-22 for T4, which shows that these were ok.

I am seeing the same doctor again today to discuss the blood tests i had last week. Hopefully this time it will go better than the last time.

[Andros]

Thanks for advice guys. It helped.

The appointment with my doctor didnt exactly go great, i will explain. so I went to see the doctor last week and told him of all the things i was feeling.
He didnt seem to care too much, made very little if any notes on what i was saying and dismissed any of the symptoms (check first post) i had as being problems with my thyroid. He simply suggested they could be other things and he didnt belive it was anything to do with my thyroid.

He then decided to check me over. He tested my reflexes (does this help in any way?), blood pressure, heartbeat which he found to be fast, breathing, throat. He also cheked my right eye and found nothing, but at this point i was thinking what the F**k does this guy know about eyes? he's an endocrinologist

After this we discussed my previous results at which time i asked about the high reading of perioxidase i found months earlier. He suggested that many people have these and might not be related to my feeling unwell or thyroid problem. I mentioned that i had been do research on the subject and thats when it kinda changed a bit. Everytime i would suggest something like my right eye, high perioxidase he would actually argue back. I wasnt trying to argue i was just suggesting things which related to the way i was feeling. He then suggested more blood tests, at which point i asked about the more extensive tests that nasdaqphil mentioned an found him arguing back again. In the end i just settled for the tests he wanted carried out which were the Free T3+T4 and the TSH.

This is getting worse and at the moment i am thinking about asking for a referal to see another doctor. He has happily taken my money for 5-7 meetings but has provided me with nothing. He told me months ago that he has never seen the readings i have on any other patient. At that point i should realised that i was always going to be difficult for him to diagnose.

I managed to get the previous results which i had before the first ones i posted and they were:
early/2/09
TSH:0.03
T4: 27

The ranges were 12-22 for T4, which shows that these were ok.

I am seeing the same doctor again today to discuss the blood tests i had last week. Hopefully this time it will go better than the last time.

I am glad you put those ranges. Actually the T4 is over range (I presume this is Total 4 not Free T4) and while that is bound and unbound hormone combined with the low TSH, I am suspecting hyperthyoid. If you recall, that was my original suspicion.

Yes, you must change docs. If this fellow has not diagnosed your health problem in 7 visits, something is very very wrong with this guy. And I get angry thinking that we still have to pay these characters no matter what.

Hang tough; we will help you as much as we can. Hope somewhere along the line you can get that TSI (thyroid stimulating immunoglobulin.)

[ANI25]

I am glad you put those ranges. Actually the T4 is over range (I presume this is Total 4 not Free T4) and while that is bound and unbound hormone combined with the low TSH, I am suspecting hyperthyoid. If you recall, that was my original suspicion.

Yes, you must change docs. If this fellow has not diagnosed your health problem in 7 visits, something is very very wrong with this guy. And I get angry thinking that we still have to pay these characters no matter what.

Hang tough; we will help you as much as we can. Hope somewhere along the line you can get that TSI (thyroid stimulating immunoglobulin.)

Thanks. You guys are great on these boards.

Just got back from my appointment, the results were:

TSH 1.47 (range 0.25-4)
Free T4 20 (range 12-22)
Free T3 4.8

He has put me on betablockers to try and help with the "anxiety", but to be honest i know its is not anxiety. A slight pattern is emerging and im pretty sure that my TSH will be very low (as it came down from the last 2 tests) and the T4 will be very high in about 8 weeks time. I say this because my first blood test was and was taken january this year:

TSH: 0.03
T4: 27

Im suspecting that my thyroid might be exactly the same come january next year. Some strange cycle.

I will be pushing for my TSI test very soon. Im gonna give it about 4-8 weeks to see if my thyroid will play up and then get a blood test and test for all of them.

Thanks again guys for the support.

[Andros]

Thanks. You guys are great on these boards.

Just got back from my appointment, the results were:

TSH 1.47 (range 0.25-4)
Free T4 20 (range 12-22)
Free T3 4.8

He has put me on betablockers to try and help with the "anxiety", but to be honest i know its is not anxiety. A slight pattern is emerging and im pretty sure that my TSH will be very low (as it came down from the last 2 tests) and the T4 will be very high in about 8 weeks time. I say this because my first blood test was and was taken january this year:

TSH: 0.03
T4: 27

Im suspecting that my thyroid might be exactly the same come january next year. Some strange cycle.

I will be pushing for my TSI test very soon. Im gonna give it about 4-8 weeks to see if my thyroid will play up and then get a blood test and test for all of them.

Thanks again guys for the support.

Hi.............................yep; looks like you are pushing for hyperthyroid. And I am very glad that you are on beta-blocker as of this writing. That will help you feel some better.

We are here for you when you need us. Keep us informed.

[ANI25]

Hi guys,

A quick update for you all. After not being diagnosed by the Endo i was seeing i decided to look for another, somebody more specific towards thyorid.

I came across a doctor in England who sounded like he could help (he was not an Endo), my only concern was that he had been taken off the NHS (apparently for treating people with thyroid replacement because of their symptoms despite their readings) I booked an appointment with him, sorted out payment and within a week i was driving 80 miles to see him.

Just before i saw this doctor i was asked to fill out a form. This form had a list of symptoms i was feeling under different categories. At this point i was already far more impressed as this was the first time someone had taken the time to note my symptoms.

Once i filled out the form i was taken to his office and he introduced himself to me. He was very polite and got straight to the point. He said to me that the ranges that the UK uses for thyroid related blood tests were created 300 years ago and therefore shall not have importance over my symptoms. He then listened to every one of my symptoms, asked me a few questions and suggested to me some very interesting symptoms my might have (enlarged tongue? Yes its true). He then told me he believed that my thyroid was behaving quite strange and and that it needed to be regulated.

We then went on to the blood tests which he help translate for me. This is when i found out that my Endo had got my results wrong. He had told me i was Hypo when i was actually Hyper and that i was Hyper when i was actually Hypo (check results at the top of the page, they fluctuate). I told him what my Endo said he he couldnt actually believe it, for the first time he didnt actually believe me!! I was shocked and to think the same people who got this doctor removed from the NHS had put this Endo i was seeing in the NHS! He said that my levels were very high and for 4-6 months my levels were 10-12 times what they should be. He then told me that i didnt need any blood tests for he time being as i have had 7 in the last year anyway (my Endo kept getting me to take them, which was costing me £160-£350 a time)

We then started talking about treating this. He suggested that i start taking thyroxine to help control the levels and because of the high Perioxidase. I was so happy that someone had finally been able to help me after 2 years getting private help and spending £2,500 on absolutley nothing i have finally found someone who could help me. It was so good to actually have someone who believed me and actually offered to help me and find the problem no matter the problem. With me being somewhat sorted he asked my Mum, who was with me at the time, how she feeling? (she is Hypo) My Mum explained that she is also feeling tired but has done for ages but the doctors refuse to up her dose. My Mums GP at the time said that because the thyroxine was taken instead of naturally been formed in the body that she will never feel quite the same again.This Doctor told he that that was complete rubbish and that he would write a polite letter to our GP explaining not only my problems and treatment but also my mums. At this point i couldnt believe what a great doctor this guys is, he is truly remarkable.

As of now i am on thyroxine and being correctly monitored. I have never felt happier in my life. This doctor has done in 1 sitting what the others couldnt do in 2 years. He specifically told me to get any tests on the NHS, not privately to save money, not like the other doctors (NHS).

I am so lucky to have found this doctor after months and months of not feeling well. To anybody who has had problems with their doctors or so called specialists about getting diagnosed and treated please PM me i will send his details so that you can also see him.

I have left a link to an article about him being taken of the NHS http://www.dailymail.co.uk/health/article-506717/The-wake-pill--controversial-thyroid-supplement-help-tiredness.html

[Andros]

Hi guys,

A quick update for you all. After not being diagnosed by the Endo i was seeing i decided to look for another, somebody more specific towards thyorid.

I came across a doctor in England who sounded like he could help (he was not an Endo), my only concern was that he had been taken off the NHS (apparently for treating people with thyroid replacement because of their symptoms despite their readings) I booked an appointment with him, sorted out payment and within a week i was driving 80 miles to see him.

Just before i saw this doctor i was asked to fill out a form. This form had a list of symptoms i was feeling under different categories. At this point i was already far more impressed as this was the first time someone had taken the time to note my symptoms.

Once i filled out the form i was taken to his office and he introduced himself to me. He was very polite and got straight to the point. He said to me that the ranges that the UK uses for thyroid related blood tests were created 300 years ago and therefore shall not have importance over my symptoms. He then listened to every one of my symptoms, asked me a few questions and suggested to me some very interesting symptoms my might have (enlarged tongue? Yes its true). He then told me he believed that my thyroid was behaving quite strange and and that it needed to be regulated.

We then went on to the blood tests which he help translate for me. This is when i found out that my Endo had got my results wrong. He had told me i was Hypo when i was actually Hyper and that i was Hyper when i was actually Hypo (check results at the top of the page, they fluctuate). I told him what my Endo said he he couldnt actually believe it, for the first time he didnt actually believe me!! I was shocked and to think the same people who got this doctor removed from the NHS had put this Endo i was seeing in the NHS! He said that my levels were very high and for 4-6 months my levels were 10-12 times what they should be. He then told me that i didnt need any blood tests for he time being as i have had 7 in the last year anyway (my Endo kept getting me to take them, which was costing me £160-£350 a time)

We then started talking about treating this. He suggested that i start taking thyroxine to help control the levels and because of the high Perioxidase. I was so happy that someone had finally been able to help me after 2 years getting private help and spending £2,500 on absolutley nothing i have finally found someone who could help me. It was so good to actually have someone who believed me and actually offered to help me and find the problem no matter the problem. With me being somewhat sorted he asked my Mum, who was with me at the time, how she feeling? (she is Hypo) My Mum explained that she is also feeling tired but has done for ages but the doctors refuse to up her dose. My Mums GP at the time said that because the thyroxine was taken instead of naturally been formed in the body that she will never feel quite the same again.This Doctor told he that that was complete rubbish and that he would write a polite letter to our GP explaining not only my problems and treatment but also my mums. At this point i couldnt believe what a great doctor this guys is, he is truly remarkable.

As of now i am on thyroxine and being correctly monitored. I have never felt happier in my life. This doctor has done in 1 sitting what the others couldnt do in 2 years. He specifically told me to get any tests on the NHS, not privately to save money, not like the other doctors (NHS).

I am so lucky to have found this doctor after months and months of not feeling well. To anybody who has had problems with their doctors or so called specialists about getting diagnosed and treated please PM me i will send his details so that you can also see him.

I have left a link to an article about him being taken of the NHS http://www.dailymail.co.uk/health/article-506717/The-wake-pill--controversial-thyroid-supplement-help-tiredness.html

This is truly such a wonderful wonderful story but I feel bad for your doctor because the medical establishment will find a way to "get him." This doctoring business is all about the money and politics now a days!

I am so hoping you feel much better and I also hope your mum gets the help she deserves to feel better too!!

Please keep in touch re your progress.

[ANI25]

Thx Andros especially for the advice and comments you posted.

Yeah i will keep you guys updated and offer any advice i can.

[Andros]

Thx Andros especially for the advice and comments you posted.

Yeah i will keep you guys updated and offer any advice i can.

Good, keeping you in my thoughts.

[ANI25]

Hey guys quick update.

Nearly completed my third week of medication and i am now up 50mg of Levothyroxine. In the next 4 weeks i should be up to the 100mg dosage that i should be on.

At the moment i am not feeling too great physically. Im still getting a little panicky, dry skin and light headed at times. I also have a quite low libido and strength of my erection is weaker which really sucks (i dont know how many of you actually wanted to know that, but i will tell you anyway!?). I am however noticing that the small white hairs that had started to grow where i had lost hair, are starting to go black. So that has cheered me up.

Mentally however, i feel really good. Still very, very tired but being on medication and finding a doctor who cares has really helped me keep a straight head (just wish the other was a little straighter).

My doctor did say that it would take time to fix as it has been fluctuating for some time now. Does anybody know from experience how long it takes to get the thyroid back in order once medication has started?

Hopefully i will be back in work real soon as i am really missing it. I should be catching bad guys not sitting at home sleeping! ahhh well.

[Andros]

Hey guys quick update.

Nearly completed my third week of medication and i am now up 50mg of Levothyroxine. In the next 4 weeks i should be up to the 100mg dosage that i should be on.

At the moment i am not feeling too great physically. Im still getting a little panicky, dry skin and light headed at times. I also have a quite low libido and strength of my erection is weaker which really sucks (i dont know how many of you actually wanted to know that, but i will tell you anyway!?). I am however noticing that the small white hairs that had started to grow where i had lost hair, are starting to go black. So that has cheered me up.

Mentally however, i feel really good. Still very, very tired but being on medication and finding a doctor who cares has really helped me keep a straight head (just wish the other was a little straighter).

My doctor did say that it would take time to fix as it has been fluctuating for some time now. Does anybody know from experience how long it takes to get the thyroid back in order once medication has started?

Hopefully i will be back in work real soon as i am really missing it. I should be catching bad guys not sitting at home sleeping! ahhh well.

Thank you for the update and I am glad that you are starting to feel a bit better. It's hard to say what dose you will end up on as males require more and you are on leave (police officer?) so therefore not as active. I suspect the titration process will take most of this year if you lab every 8 weeks as you should. You want to reach the euthyroid state (normal for you) were you are feeling great, are able to go to the gym for heavy work outs, do your job, sleep well and do all the other ordinary things you need to do.

That said, have you asked the doctor to put you on some testosterone? Have you had labs for testosterone? Eventually, getting the thyroid just right (there's that euthyroid word again) and that will be back to normal as well but a little help along the way would be good. Get doc to run testosterone test for you if you have not had it already. We do find that males with TD do have low testosterone generally speaking.

I am sure some of the men will be along with their personal input.

Let us know.