confused and very very scared!!!

[Lavers]

Hi every-one.  I wonder if any one can share any experience with me?  have had ovaries and womb removed 12 years ago ( am 44 now)  for the last 1 1/2 have been taking levothyroxine 50mg for a border line underactive thyroid.  I also take my combined HRT.  My really really horrible symptoms went within weeks of taking levothyroxine at last I felt normal and was enjoying life.  My family, friends and customers could not believe the difference in me.  3 months ago I started to get confused, exhausted, constipated etc etc again and so asked for another test.  At the time of taking the blood I had not taken any tablets for 2 weeks as I had ran out. my blood results where:


Date 19/04/10
Serum free T4 level (pmol/l)                        25.9      - ref 9-19
Serum free triiodothyronine level (pmol/l)     11.4      - ref 0.2 - 4

My GP rang me on 22 April and said I had to stop taking the Levothyroxine as my rfesult were too high and to have a re- test in a month or so.

I did stop taking the tablets and the cloud of almost dementia like symptoms returned together with the exhaustion, constipation, fingers tingling in the morning ( worse this time) etc etc.  My daughter then  friend of mine and then a customer of mine asked me had i stopped taking the tablets after a week off them!

I will must point out that I do go the gym for 1 - 2 hours 3 times a week (when off tablets only manage an hour if that as so knackered)  This keeps my weight at 11 stone ( i am 5 ft4) but for love nor money can I loose weight....but thank god I am not putting any more on!!!!

On the 9th June 2010 I had another blood test and started taking the levothroxine again straight after the test as I could no longer stand the symptoms.  

These test results where:
10th June 2010
Serum free t4 level  (pmol/l       24.2   - ref: 9-19
Serum TSH level (miu/l)           <0.02  - ref 0.2 - 4

On the same day I had my blood pressure and hear rate chaeck ( at chemist!)
these were    sys  dia  pul ( left arm)    sys  dia  pul (right arm)
                   134   62   88                   119  59   81

PS on 10/4/06 I had a thyriod peroxidase anti body level of 33.0+ and on 30/10/08 it ws 29.0+

My GP says that  I am now over active and accused my of continuing to take the table after he had said not to.  I told him I had not (thankfully my husband was there for support). The GP then said that the tablets have stayed in my system for 9 weeks and had an affect on the reading and that my problems were depresion.  My husband told him I was not depressed and I agreed saying that I was depressed at the situation and my symptoms.

Ladies I am at a loss and very very scared.  I can not go back to the way I was.  My reactions were so slow I was dangerous driving, I could not run a business as my brain was cotton wool. and my family got no contribution from me as I was always asleep.  At one stage I really really though I had cancer of the brain as things got so bad!!

This recent period off the tablets has reminded me of how horrible it was.  I have managed to get a refereal to an Endo but cant see them until end of Aug with cancelled appointments it will be christamas by the time I get seen.

I have continued taking the tablets as I do not have the symptoms when on them and I am so scared not too.  In fact I am so scared I keep crying at the thought of going back to that horrible place that I had another sight of recently!

Add to that my eyes are so sore.  I dont know it this is a new symptom or not.  I had my eyes tested yesterday and they said they were too dry and very irritabted (not with pollen) but no pressure.  She asked did I want a refereal to a specialist and I said not just yet I have enough on my plate!!!

Has any-one else been in this sutuation and can let me know that there will be light at the end of the tunnel??

I can see by looking through this forum that this is a difficult topic and very hard to understand.  If any -one can point me in the right direction of any sites that will help me or offer similar expericences I would be so very grateful

[Super_sally888]

Hi,

the thyroid hormone resistance is not well known.

You need a doctor who is really a specialist.

Two things I can think of immediately:

1. Get your vitamin D levels tested.  I read somewhere if these are low in can contribute to the resistance.
2. Get your FT3 tested.

[goolarra]

That's a tough question to answer since we all are so different and respond differently to levels of FT3.  Certainly, levels close to or over the reference range for your lab are a concern.  However, the most important factor is whether or not you are experiencing hypER symptoms.  Hyper symptoms are an indication that you are either hyperthyroid or overmedicated or have started on too high a dose or increased too rapidly.  What is your FT3 result and reference range?  Ranges vary from lab to lab and have to come from your own lab report.

[jemima59616]

What is a dangerously high level for T3?

[goolarra]

No, it wouldn't make the FT4 low since there is plenty available to your cells...it just can't get in.  This is characterized by high levels of both FT3 and FT4 with hypO symptoms.  You're right, there's plenty there in your bloodstream, but your cells are unable to use it until the concentration is extremely high.  HRT could be complicating this.  All hormones are intertwined, and what effects one often does the other as well.

Feel free to PM me if there's anything I can do to help.  Happy reading!

[Lavers]

Hi thank you so much for your response.  I guess i am am going to have to get a grip on this and fast!!!  I get what you are saying now.  I am producing enough therefore my TSH does not need to kick in but the T3 and T4 it is not getting into my cells..but would that not make the free t4 readin low as this is the T4 available in my system ?? could be something to do with HRT.  Read interesting post about gluten...... my irritable bowel def worse in 9 weeks off meds.  I can handle all of the physical symptoms.. I can sort them.  Its the mind fog i just cant handle.  My reflexes seem to slow right down!!

I will look into this more next week and perhapes message you if that is ok.

[Lavers]

I really really appreciate your help.  next week i will start looking into it and see where we go! It sounds corny but to have another person say i know how you fell makes a world of difference.

[jennerfennerbenner]

I HAD THE EXACT SAME PROBS, AND FINALLY FIGURED OUT HOW TO ADJUST MY DOSE MYSELF.  LIKE I SAID I WAS JUST LIKE THAT AND FOUND THAT TAKING HALF OF MY 50'S IS WHERE I'M FEELING REALLY GREAT.  50 WAS TOO HIGH AND 0 HAD ME FEELING STUNNED!  HAPPY MEDIUM 25---I'M HAPPY AND EVERYONE AROUND ME IS HAPPY--ALTHOUGH THAT TOOK OVER A YEAR. MY EYES ALSO BOTHERED ME--BUT NOT ANYMORE!  FEEL FREE TO CONTACT ME AS I KNOW HOW YOU FEEL AND REMEMBER ALMOST GOING CRAZY BEFORE NOW.  MY DR. SAID THAT 25 WOULD DO NO GOOD-TOO LOW OF A DOSE--BUT NOT FOR ME I FEEL GREAT!!!!

[goolarra]

What happens with thyroid hormone resistance (THR) is that the cells become resistant to T3 and T4.  In other words, you have very high levels of T3 and T4 (the two main thyroid hormones) in your blood, but it can't get into your cells, so your cells are starved for thyroid hormones even though your FT3 and FT4 levels are very high.  You feel hypo even with extremely high FT3 and FT4.

One woman who posted on the forum a while back was treating this by taking massive doses of levothyroxine (T4), but most that I've read of are treating it with massive doses of T3 (Cytomel or generic equivalents).

If I can help with any of the terminology, abbreviations, etc., just ask.  I know some of the literature on this could put you out if you were raging hyper!  Zzzzzzzz...

[Lavers]

Thanks for the link.  I had a look but really dont understand all the abbreviations and much of the terms.  I am so very early into this and need to join the beginers class i think!

[Lavers]

ooo thanks goolarra. onto it now...  17 year old daughter can make tea!

[goolarra]

You might check out his thread from the archives.  It has a lot of good information on thyroid hormone resistance (THR).  In a nutshell, THR is characterized by very high levels of FT3 and FT4 due to the fact that T3 cannot be metabolized at the cellular level.

http://www.medhelp.org/posts/Thyroid-Disorders/Thyroid-Hormone-Resistance/show/1202364?personal_page_id=287727#post_5499329

After nine weeks, and thyroxine should be well out of your system.  The second set of tests should have been medication-free.

There are references in that thread to other articles on THR, and you can google and find more.

[Lavers]

I did respond to your reply but dont know if it posted!!!  I explained I am new to this so if i am repeating myself ...sorry.

I dont really want to self diagnose..however there is only me that knows how my body feels and after a while... I have to take personal responsibility for trying to live the best life I can!!  Sounds dramatic ...not meant to be!

I agree with your answer and it would have been my first conclusion.  I had my blood tests whilst I was off thyroxine and had been for 9 weeks.  Do you think the thyroxine could still have been in my system or would that blood reading have been my bological one and not a medication induced one??  Also my horrible symptoms retruned during those 9 weeks.

If Adam made Eve what was his problem???? why inflict so many confussing horrible syndrome's on us ladies!!!

[Lavers]

Hi Totie,  I have just being looking through the site as i am new to it!! Are you part of the ovarian cyst forum?  The reason that I ask is that i am 43 and have had ovarian cysts since the age of 16.  If I can answer any of your questions like you have done mine then please ask. Not a doc but can recount my experience!

[Totie]

To me you are over medicated. Your TSH & T4 indicate your hyper. In my opinon I don't think you should be taking the medication.

Your sore eys could be thyroid eye disease, that could be being caused by being over medicated.