Thyroid problem question

[GillySmith]

I am now 47.  At age 20 I was diagnosed with over-active thyroid and the only form of treatment available was the radio-active iodine capsule as my thyroid tests were really bad.  In December just past, I suddenly started having panic attacks; ones that did not let up and continued all day.  Doctors prescribed anti-depressants which I refused to take knowing this was only to do with my thyroid - I have no problems in my life to cause panic attacks and most certainly do not suffer from depression.  Then blood work showed my thyroid levels went crazy so my medication was changed to .1mg of Eltroxin per day which I am currently taking BUT I still cannot shake this terrible anxiety and sometimes overwhelms me and I don't want to leave home because I cannot face people feeling like this.  It is winter here in SA but I cannot get warm.  My body weight has dropped from a size 8 to a size 6 and all my muscle mass has gone (I am a training and competitive Powerlifting athlete).  My strength and energy have gone.  My eyes feel scratchy, jumpy and blurry.  My pulse is apparently normal but it still feels like my heart is fluttering away.  I have major brain fog;  I have sudden moments of dizziness and light-headedness.  I feel so tired but my sleep is not deep and I still feel tired on waking.  I am hungry and eat so much but yet I stay thin.  I have just had further blood work but it shows all normal.  What is going on with me and what do I do now?  The closest Endocrinologist is in another city, 4hrs away with a 4 month waiting list so do I make an appointment or am I wasting my time if my blood work here shows normal? I have currently been on my new dosage of Eltroxin for 3.5 months.  Shall I just give it time?  the anxiety is unbearable and I am terrified of those panic attacks.......please help advise me.  thank you so very much....Gill

[gimel]

I meant to mention that if not tested for cortisol, that needs to be done.  Note the following info.

http://www.hormonerestoration.com/Cortisol.html

[gimel]

First thing to note is that you need to settle in on your daily dose of T3 and stay consistent with it for a while.  It is not an immediate fix for how you are feeling at the moment. It takes 4-5 days to reach full effect on serum levels.  Also, when you have been so sick for so long, it takes a while for your body to heal and reflect the full effect on symptoms.  In other words, symptom changes tend to lag changes in serum thyroid levels.  

Regarding your question about T3, you will have to stay on T3 meds unless something changes that causes you to start converting enough T4 to T3.  Even if the conversion improves, I think you will always require some amount of T3.  I haven't previously mentioned it, but if possible to get a test for Reverse T3 (and a Free T3 from the same blood draw), it would be good to determine the ratio of FT3 to RT3.  

Hormone levels diminish as we age, requiring supplementation to maintain good function.  What hormones are you taking and what brand are they?  The reason I ask is provided in this link to a site of an excellent thyroid/hormone doctor.

http://www.hormonerestoration.com/Aging.html

Gastritis, or IBS, as sometimes known is a symptom that can be related to hypothyroidism.  I have also had what the doctor called gastritis.  It was a while ago and I think it was when I was going through a hypothyroid period.  At any rate, after getting my FT4/FT3/RT3 levels optimized I have had no further problem with it.  

[gimel]

You are very welcome.  So happy to hear you are feeling much better.  Now that you have a doctor that is willing to test and adjust Free T3 in addition to Free T4, and you supplementing Vitamin D, I am sure you will continue to improve until you are totally normal again.  

Before commenting on your T3 dose, please confirm what dosage of T3 you were taking and how long on that dose, when the Feb. tests were done.

[GillySmith]

Hullo, I sent you a reply but I must have done something but it is gone and I am now re-doing this reply.  Silly me!

I started on the T3 meds Friday, 19th January.  I started on a whole tablet (20mg) in the morning only.  6 hrs after taking this, I felt the tablet wearing off and the anxiety returning and my doctor had told me to take it easy to begin with but that the goal was to end up taking it 3 times a day.  The second day I took the first tablet and by 2pm I felt far too anxious and took the second one.  Day 3 was much the same.  The fourth day I considered what the doctor had said and then I started taking half a tablet in the am and half in the later afternoon.  Sometimes I would take a whole one but that is when I started trembling and you said I should only start off with a low dosage so from then until now it has only been half a tablet in the morning and sometimes half in the afternoon, depending on how I feel.  The day of the blood tests I never took the medication and in fact had only had a half tablet the day before (and NO afternoon one).

He has also given me Alzam 0,25 mg for only when its necessary.  The anxiety I feel now is different in that I feel my shoulders getting stiff and painful and end up with a headache.  It is not nearly as severe as it was before.

I wanted to tell you what I noticed immediately after starting the T3 meds:-  my doctor took my body temperature before I started these meds and my temp was 35 degrees.  This visit, my temp was 37 degrees.  I found that to be fantastic because I was cold all the time before and my hands and feet were always frozen.  The glands in my neck went down.  They had been swollen since I started with the anxiety and panic attacks.  My brain fog is clearing although it is still there but not so bad.  I had to take regular doses of Vit C because it always felt like I had flu/cold symptoms and now that has all gone.

These are the other meds I take:-
Trepaline 25mg, Vit D, hormone tablets, Eltroxin and Tertroxin.

I have two questions:  will I always have to be on T3 meds or will my thyroid begin working again?

Will I always need to take hormone tablets?  if not, then what is the point of me taking them?  surely my hormone levels will just go down again if I stop?

Also, after many questions and a physical check, he says I have Gastritis.  I am now on Mylan Pantoprazole 40mg, 1 per day.  Would this have been the cause of my very high Ferritin levels?

thank you so much for your help. Best regards, Gill

[gimel]

I have reviewed your test results and noted the following.  Your FT4 is at mid-range, which is adequate.  As you have noted, your Free T3 is terribly low, due to inadequate conversion of T4 to T3.  There are many different causes for this, including low ferritin, which you do not have.  Many of us have found that FT3 needed to be in the upper third of the range, and adjusted from there as needed to relieve hypo symptoms.     So you need to add a source of T3 to your med and raise dosage to get into the upper part of its range, and relieve symptoms.  Here, Cytomel is a frequently prescribed T3 med, and there are also several generic versions listed as Liothyronine.  Another possibility is desiccated porcine thyroid med sold here as Armour Thyroid and NatureThroid, among others.

In addition, Vitamin D is very important to thyroid hormone metabolization at the cellular level.  D needs to be at least 50 ng/mL, so you need to supplement with 2000 IU of D3 daily and re-test after a couple of months to see if more is needed.  Your B12 level seems adequate.  I am somewhat puzzled by your high ferritin level, since other iron tests appear normal, so that is something to discuss with your doctor.  

A good thyroid doctor will treat a hypothyroid patient by testing and adjusting Free T4 and Free T3 levels as needed to relieve symptoms.  Symptom relief should be all important, not just test results, and especially not TSH results when already taking thyroid med.  I say that because most often hypothyroid patients taking doses of thyroid med adequate to relieve symptoms find that their TSH is suppressed below range.  That does not mean hyperthyroidism, unless you have hyper symptoms due to excessive Free T4 and Free T3.  Many doctors don't understand that our bodies normally function with a continuous low flow of thyroid hormone which establishes an equilibrium among TSH, FT4 and FT3.  and that when a hypo patient takes the daily dose of thyroid hormone all at once, the equilibrium is affected, such that an adequate dose typically will suppress TSH.  I am sending you a PM with some info on that.  To access, just click on you name and then from your personal page, click on messages.  

[GillySmith]

Hullo. This is an update of my latest blood results.  I want to tell you that the doctor put me onto the T3 medication called Tertroxin and I have followed your recommended dosage and I am feeling MUCH better.  I only have moments of anxiety now and he has given me a script for Alzam 0,25mg for those moments that I do feel anxious, which is hardly ever now.  

My stomach was still giving me problems but after my visit to the doctor, he ran tests and my liver seems normal.  He says this is a case of gastritis and has given me tablets called Mylan Pantoprazole 40mg x 1 per day.  Hopefully that will fix me.  

I have posted my latest results onto the site for you to look at.  It seems that my TSH has now come down.  I am still taking 0.1mg Eltroxin daily and 10mg Tertroxin in the morning and only take an additional 10mg in the afternoon if I feel like I need it.  I don't want to experience the jitters and trembling from taking too much like when we previously chatted about this.  Also, I did not have that T3 medication on the day I had my blood work done.  I remembered you telling me to do this.  

May I ask you how we can get the TSH reading to get to the normal range?  also, will I need to take the T3 medication for life now?  Any advise or recommendations are greatly appreciated.  My doctor is still happy that I share this all with you and pass your recommendations on to him.

Thank you for all your help.

Gill

[gimel]

Great to hear, after all this time, that you have found a doctor that is willing to pay attention to symptoms and also test for Free T4 and Free T3.  Before further discussion, please post your FT4 and FT3 results along with reference ranges shown on the lab report.  Also, your Vitamin D.  What dosage of Eltroxin are you taking?

[GillySmith]

Hullo.  I have uploaded the new test results.  There are 4 pages.  Please advise if you are unable to read them.  Look forward to hearing from you. I am on 0.1mg Eltroxin, 1 per day.  Regards, Gill.  

[GillySmith]

I have posted two sets of these 4 pages, in different formats in case you are unable to read in one.

[GillySmith]

I have also just added pages 5 & 6 of the tests

[GillySmith]

also, my new doctor is assisting me and knows about this site and how you have helped me so any answers would also be passed to him.  Your help is valued and highly appreciated.

[GillySmith]

I am going to try.  Thank you.  I will let you know how I do.  Have a great weekend.

[GillySmith]

Hullo.  Compliments of the season.  I finally found a doctor who was willing to listen to me.  The one Specialist Physician that I went too, actually swore and told me that my way of thinking was B*llSh&t! those were her exact words.  The next doctor I saw told me I was barking up the wrong tree and said that the thyroid was actually a VERY simple gland and all you did was test TSH and medicate accordingly.  I asked for an Endocrinologist referral and I am still waiting for that appointment to be confirmed more than two months later.  Then at church recently I heard a chap speaking of his young daughter who was having panic attacks and had gone through a similar experience to me with this child and he finally found a young doctor who agreed that there was a strong possibility of an underlying medical problem and last I heard, some test results came back and there is a problem which they are now working on.  I went to see him.  His said that so many mental health issues where actually the result of an underlying medical problem and he was out to prove that not everyone has these issues due to horrific life circumstances.  He spent around two hours with me asking questions.  He was able to log onto my medical cover profile and could see all the MANY doctors that I had seen and all the many tests I had gone through.  He agreed that I most definitely could have a problem with T4 to T3 conversion and ran some new tests.  He is the ONLY doctor who was willing to test or consider testing more than just my TSH levels.

I had to wait a few days for the results but he called me a short while ago and gave me news that my T3 is very low and this is a very strong indication of a conversion from T4 to T3.  He also said I had so little Vit D.  He said that one of my autoimmune markers was off, indicting a problem which we will not deal with right now but will continue to monitor it;  certainly not ignore it.  My hormone levels were completely out and even though I have had a hysterectomy, he has put me on something called Angelique to bump up my hormone levels just for two or three months.  For now, I remain on Eltroxin, and also take Vit D and this hormone pill.  I have to see him end of January again to tackle the rest.  I have no idea what he will give me to correct the T3 levels.  

Finally after suffering for 5 long years with horrible chronic panic attacks and anxiety, I have a diagnosis.  Any doctors who want to come to this part of the world will never be out of work with the number of people suffering this and NOT one Endocrinologist and only one GP here who believes this problem.

Are you able to give me any further insight into names of medication for T3 and what the autoimmune problem could be?  

[gimel]

Is there a hospital or clinic that you can get to and let them try to help?  The problem that I see in your Free T3 level being so low in the range.  At 3.5 it is only at about 10% of the range, which is much too low.  

Lacking that possibility is there any way you could get thyroid med with T3 without a prescription?  Also, can you get Vitamin D3 and an iron supplement needed to raise your ferritin level?

[GillySmith]

I feel so terrible today.  I am really afraid.  The feelings of being breathless and tight chested that were coming and going and now permanent.  It started yesterday here at work.  It usually only came on when in the gym but yesterday I was just working at my desk and it came on.  Along with it I feel lightheaded and dizzy.  It took a while and eased off but came back during the night and today I woke up and it has not gone at all.  I had some pur-bloka at home and took a half one with my Eltroxin this morning.  The heart rate has slowed down but Im dizzy, lightheaded, my lips feel tingly and my eyes feel strange....I have a prickly sensation on my scalp and I feel tight and anxious and now I have heartburn which I have only ever had when pregnant and my appointment is only for the 31st.  What can I do?  I am so afraid because we live far out of town and it is weekend..........what the heck is happening to me?  I cannot work like this and it has already cost me so much time off........

[GillySmith]

thank you for all your help.  I have found a new specialist physician (new to our city) and have made an appointment and I am going with my blood results and all the info from the website you gave me.  Apparently this doctor has a special interest in thyroid.  My appointment is 31 August 2015.  I will keep you posted.  Best regards..

[gimel]

You don't have to have an Endo. First, many of them specialize in diabetes, not thyroid.  Then we find they are often very rigid in their "Immaculate TSH Belief" and only really pay attention to TSH, which doesn't work.  If they go beyond TSH testing they also have a tendency to use "Reference Range Endocrinology", by which they will tell you that a thyroid test that falls anywhere within the range is adequate.  That also is wrong.  

You need a good thyroid doctor that will treat clinically by testing and adjusting Free T4 and Free T3 as necessary to relieve symptoms.  Symptom relief has to be all important, not just test results, and especially not TSH results.  So if you can use all this info and get a doctor to treat clinically, then together you can get what you need.  

Body weight is affected by a number of things.  Among those of course is diet and exercise.  Also very important is resting metabolic rate (RMR), which is very much affected by thyroid levels.  Once when my med, Armour Thyroid was taken off the market for close to a year due to issues with the FDA, I had to revert to Synthroid, and I became hypo again due to low Free T3.  .  In about 8-9 months I gained about 18 pounds, without changing anything else.  When Armour was again available, I switched back and in about 8 months I lost all 18 pounds without any other change.   So getting your thyroid levels optimized will just bring your RMR to normal, all other things considered, like diet and exercise.

[GillySmith]

morning.  Thank you for that information.  At least I know what the problem is now.  I will have the test of the Vit D, B12 and ferritin done.  I have two questions if you don't mind.  1.  Do I need to make an appointment with an Endocrinologist in another city or can I sort this out without his/her assistance?  Will my body weight go up?  I don't mind my current weight but my muscle mass has gone.  Thank you for take the time to help me.  Have a great day.

[gimel]

Results from after starting on the thyroid med are obviously improved but not yet high enough to relieve hypo symptoms.  Your thyroid function may be biochemically normal, but you need for it to be clinically adequate.  Your Free T4 is adequate, but your Free T3 is only at about 11% of the range,  far too low, indicative of inadequate conversion of the T4 med to T3.  Many members say that relief from hypo symptoms required Free T4 at the middle of its range, at minimum, and Free T3 in the upper third of its range.  Note this info in the link following.  "The TSH level tells us nothing about the physiology of a person on thyroid replacement therapy. In tests done about 24 to 28 hrs after their last daily dose, most people on adequate NDT therapy have a suppressed TSH. They usually have FT4 levels that are 1 to 1.3ng/dL, and free T3 levels that are rather high in the range or even slightly above the range. The higher FT3 level compensates for the lower FT4 levels on NDT."

http://www.hormonerestoration.com/Thyroid.html

So you need to add a source of T3 to your meds and gradually increase the dose until symptoms are relieved.  Also, hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin.  Deficiency in either can cause symptoms that mimic hypothyroidism.  Low D or ferritin can adversely affect metabolism of thyroid hormone.  D needs to be about 55-60, B12 in the very upper end of its range, and ferritin should be 70 minimum.  If you can get those tested, then you can supplement as needed to optimize.  

[GillySmith]

Hullo.  The test taken 29/04/2015 says:  TSH >100 (0.27-4.20); Free T4 is <1 (12-22) comments at the bottom read:  the results are typical of primary hypothyroidism, determination of thyroid antibodies is recommended, if not already available.  Then the test done on 17/07/2015 says:  TSH 0.65 (0.27-4.20);  Free T4 19 (12 - 22);  Free T3 3.5 (3.1-6.8)  comments at the bottom read:  thyroid function is biochemically normal.  

hope that helps.  Thanks for assisting - much appreciated.

[gimel]

Having a hard time reading the lab report.  Can you confirm the actual Free T4 number.  It looks like it says below 1.  

[GillySmith]

morning.  I have attached the results.  I hope they are clear and you are able to read the results.  Look forward to hearing from you.

[gimel]

Click on your name and then try uploading it in the photo section of your personal page.  

[GillySmith]

Hullo.  Thank you for your reply.  I have the results.  How do I attach them?

[gimel]

The first thing I would like to do is review your thyroid related test results and reference range shown on the lab report.  Just because the lab results fall within the so-called "normal" range does not mean that is adequate for you.  The ranges are far too broad to be functional across their entire breadth for everyone.