# Hashi - Cant balance labs



## Coco (Aug 2, 2010)

Hi everyone I am new here although I have been looking in regularly for some time for some hope and inspiration.

I have been hypo for three years now and my blood work has been all over the place from month to month, and basically I feel like death warmed up most of the time with all the usual hypo symptoms and associated problems.

My doctor is very much one who mainly treats on TSH labs and with levothyroxine. I live in France it is very hard to get a GP who completely understands how awful they can make you feel even when you fall in close to normal range which for me isn't that often.

I started off on levothyroxine 75ug three years ago when first diagnosed and for a while all was fine, then something went haywire and my dose had to be raised. Well to cut a long story short my TSH has gone up and up and only occasionally down but never within normal range over the last three years.

I am currently on levothyrox 175ug at present because three months ago after being on a 200ug dose for nearly a year my TSH suddenly dropped down to 0.02 I dont think I was truly hyper as I still had a few hypo symptoms and although I didn't lose any weight I started feeling a bit more on planet earth and more with it again... My doc had a fit when he saw my TSH labs and knocked my dose down to 150ug even though I begged him to leave it a while longer to see what would happen but he insisted he couldn't do that and consequently my TSH shot straight back up to over 15.6 and I am back to feeling really ill again, my weight has shot up, fatigue has set in worse than ever before, I have pain in my joins, leg cramps at night, my skin is dry and flaking and my hair has started breaking again and I am feeling upset and depressed with this constant battle. The weather has been over 30 degs here and I have been wearing a thick woolly winter jumper trying to keep warm, needless to say everyone thinks I am completely mad. Anyway my GP raised my levo up to 175ug last month and ordered another blood test for a months time.

In light of all this I insisted on more labs being done Free T3 and Free T4, TSH and antibodies this month and I got the results back today,they are as follows:

Free T3 3.0 (range 2.6 - 4.6)
Free T4 11 (range 12 - 22)
TSH 7.76 (Range 0.25 - 4.2)
Anti-Tissue Peroxidase - 308 (Range < 10)
Anti-Thyroglobulin Antibody - 504.9 (Range <34)

In the last 2 years I have had several thyroid scans and I knew that the state of my thyroid was in progressively poor shape. Last scan Feb 2010 - hyperechogene right lobe with hypoechogenic multiple micro nodules and one larger hypoechogenic nodule 6mm in diameter on the left lobe which appears to be growing at a slow rate of 2mm per year although they wont do any further investigations until it is at least 10mm. There was thryoiditis then a question mark written along side the report, so I was not at all surprised by today's antibody results as it simply confirmed what was already suspected from my last scan.

So I returned to my Docs this morning. He scratched his head and said he couldn't understand what was happening to me and he has given me another prescription for the same dose of Levo 175ug again and a referal letter to see an Endocrinologist. There is supposed to be a really good one about 50km from us but unfortunately I have to wait until she comes back from holiday after the 15th August to get an appointment with her. After a really bad experience with my first Endo which I never want to go through again I think it might be worth the wait.

My question is this... Is it normally so hard to balance hormones to within normal range and is there anything more I can do to help myself? I cut out all foods that might interfere with my meds a long time ago, I always take my dose an hour before I eat in the morning and I am also taking multi-vitamins at lunchtime to try and help boost my immune system as I also have auto immune psoriasis and when my TSH is too far off this flares up too.

I am pretty much at my wits end now and so is my long suffering family. Is there any advice you can give me to try and relieve this debilitating fatigue pain and depression as it is really dragging me down. My OH keeps telling me to get out more or at least sit out in the sun but this makes me feel even worse.

I would really appreciate any advice you can give me please


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## Andros (Aug 26, 2009)

Hi Coco and welcome. It is wrong for a doctor to treat based on TSH only. Your doc should have looked at your Frees and seen that you are undermedicated. Your FT3 should be higher than the mid-range of 3.6; most of us feel best in that arena.

I am worried about the high Thyroglobulin Ab also.

http://www.nlm.nih.gov/medlineplus/ency/article/003557.htm

And it might be good to get tested for rT3 (reverse T3) as well............

http://thyroid-rt3.com/whatare1.htm

Lastly, have you ever had FNA (fine needle aspiration) of those nodules?

Here's hoping we can be of help to you and hopefully this new endo will be on the ball. You will have to let us know how this all pans out.

Believe it or not, I have replied to this post 3 times and the first 2 times I did not notice it did not submit because there was too much text. I am sorry you had to wait so long.


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## Coco (Aug 2, 2010)

Hi Andros thank you so much for your quick reply I had a really bad day yesterday so didn't get online.

I am really hoping that when I do eventually see the Endo that she will do tests for everything including those for adrenal fatigue, unfortunately many GP's and indeed Endo's in France are not as knowledgeable or indeed flexible on thyroid issues they have very old school ideas way behind the times and it is very frustrating.

I did ask a while ago about T3 treatment but my GP said no because mine fell within the normal range it was at that point I knew I had to do more to get a second opinion so at least with my referral I hope that this will happen very soon.

As far as a FNA they wont entertain it until the nodule is at least 10mm and mine is only 6mm at present so I have a bit of a wait yet but I am going to voice my concerns to the new Endo when I see her as my voice had changed a lot in the last 12 months to the point where some days it sounds like I have laryngitis although I don't have any problem swallowing or eating.

I have asked my GP about RT3 test but I don't think he had heard of it but I will bring it up again when I see the new Endo.

I had a blood test done a few months ago that suggested I may have very mild kidney problems too my creatinine came back at 9.9 (Range 5 - 9) and creatinine clearance test came back at 68 (range > 60) but as I understand it a healthy person of my age and weight should have a clearance of > 90 and once you reach as low as 59 you have moderate kidney disease by then. Maybe I have got it all wrong but I do suffer from water retention and it balloons in my legs and I also have to go to the loo a lot but GP's answer was to say I have to drink more. I was surprised as his answer as I drink at least 2 litres of fluids a day anyway and I never drink alcohol at all so drinking more is only going to mean I retain even more water, catch 22 situation again.

I have had many other tests too

Sodium 137 (range 135 - 145)
Cholesterol HDL 0.35 (range 0.40 - 0.60) LDL 1.31
Ferritine 61ng/ml (Range 18 - 17)

I eat a lot of salt so I don't want to add any more to my diet but I do take a multivitamin supplement everyday in the hope that it will boost my ferritine count a bit higher in the hope my hair will stop falling out.

You said that you are worried about my high Thyroglobulin Ab results, are my levels very high in your opinion? Although I know they are above normal but I don't really understand the significance of the numbers to be honest and have not been able to find any reference to the number on the internet, I thought this would just confirm Hashi's but can it mean other things too?

Thanks ever so much for your help and support


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## Andros (Aug 26, 2009)

Coco said:


> Hi Andros thank you so much for your quick reply I had a really bad day yesterday so didn't get online.
> 
> I am really hoping that when I do eventually see the Endo that she will do tests for everything including those for adrenal fatigue, unfortunately many GP's and indeed Endo's in France are not as knowledgeable or indeed flexible on thyroid issues they have very old school ideas way behind the times and it is very frustrating.
> 
> ...


You may have to start screaming the possibility of cancer to get someone's attention. That is ridiculous. I am sorry for you re all of this.

Do your research and read the links I furnished for you.

Here is more...........

http://www.thyroidmanager.org/

Thyroglobulin Ab http://www.nlm.nih.gov/medlineplus/ency/article/003557.htm

It sounds like you have mxedema also.

http://en.wikipedia.org/wiki/Myxedema

http://emedicine.medscape.com/article/768053-overview

You probably crave salt because of the adrenals so yes, you need those checked also.


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## Coco (Aug 2, 2010)

Thanks Andros for all the info I have read all the links you have provided thoroughly and it is kinda scary when you think of all the things that might be. I spend a lot of time surfing for info but unfortunately despite googles best efforts sometimes it is hard to find answers although a lot of food for thought is there at your finger tips.

I will take your advice and I will let you know how I get on when I do eventually get my appointment. A huge thank you for your time and advice it's nice to know I am not alone in this never ending uphill struggle.


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## Andros (Aug 26, 2009)

Coco said:


> Thanks Andros for all the info I have read all the links you have provided thoroughly and it is kinda scary when you think of all the things that might be. I spend a lot of time surfing for info but unfortunately despite googles best efforts sometimes it is hard to find answers although a lot of food for thought is there at your finger tips.
> 
> I will take your advice and I will let you know how I get on when I do eventually get my appointment. A huge thank you for your time and advice it's nice to know I am not alone in this never ending uphill struggle.


My best thanks will be that you get the help you need and deserve to have re all of this.

I and everyone on this board is here to help you, support you and motivate you. As you can see, you have to learn to advocate for yourself. Sad, but true. We will help you do that.


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## Coco (Aug 2, 2010)

Good news , I went to see my French Endo yesterday and she said that it is pointless treating Hashi's with lab test results and from now on I will be treated by how I am feeling. She said she is also going to ring my GP and explain my new treatment regime to him.

She has raised my thyroxine dose back up to 200ug as I felt a lot better than I do now when I was on that dose before and said that if that doesn't eliminate all the hypo symptoms I have been having that she will give me some T3 to go with it when I return to see her on the 8th November.

She has also prescribed another thyroid scan but thinks that my voice will come back once my hormones are in better balance.

I think I have struck gold, at last and there might light at the end of the tunnel. arty0006:


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## Andros (Aug 26, 2009)

Coco said:


> Good news , I went to see my French Endo yesterday and she said that it is pointless treating Hashi's with lab test results and from now on I will be treated by how I am feeling. She said she is also going to ring my GP and explain my new treatment regime to him.
> 
> She has raised my thyroxine dose back up to 200ug as I felt a lot better than I do now when I was on that dose before and said that if that doesn't eliminate all the hypo symptoms I have been having that she will give me some T3 to go with it when I return to see her on the 8th November.
> 
> ...


Thank God!!! You have struck gold!! Hang on to this one. My opinion is it might be better to lower your Thyroxine dose and add the T3 starting in very small increments and titrate upward as needed. With T3 added, you don't need much if any T4 as your T3 is your active hormone.

See how it goes and do let us know. I am excited for you!


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## Coco (Aug 2, 2010)

Andros said:


> My opinion is it might be better to lower your Thyroxine dose and add the T3 starting in very small increments and titrate upward as needed. With T3 added, you don't need much if any T4 as your T3 is your active hormone.


Thanks Andros, When I go back to see her that is what I will ask her to do, unfortunately French Doctors see themselves as in charge of your treatment and you don't get much say in what happens and when, but she is the most modern thinking I have come across yet and did say she will give me T3 if when I go back I still have hypo symptoms. I guess I just need to be patient for a few weeks.

The last Endo I saw two years ago told me that the way I felt was nothing to do with my thyroid as my TSH was just above normal, she said I just needed to lose weight. I came away in tears.

I am having another routine thyroid scan on Tuesday afternoon so she can keep an eye on it.

Just food for thought but why don't doctors routinely treat with T3 as well as T4 if it is a more useful hormone than just T4 alone?


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## Coco (Aug 2, 2010)

Well I went back to see my endo on the 8th of November and once again she was brilliant. Due to my fatigue she has referred me for a sleep study because she wants to make sure that it is caused by my thyroid and not another underlying problem like apnea.

She has now given me cynomel and although I still have a fair few hypo probs like dry skin and hair oh and still a lot of hair loss, I must say I am starting to feel so much better and my depression is lifting. Since the 8th Nov I have managed to lose 9lb in weight too without any change to my diet what so ever... big bonus as I was beginning to worry about my ever increasing weight gain and breathlessness! Fortunately I have not had any of the other side effects listed on the leaflet from taking it so far fingers crossed.

So I am on 200ug levothyroxine and 0.025mg cynomel for now and things are looking up. I go into hospital for sleep study on the 8th of this month then I have a blood test end of December and return to see endo again beginning of January.


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## Andros (Aug 26, 2009)

Coco said:


> Well I went back to see my endo on the 8th of November and once again she was brilliant. Due to my fatigue she has referred me for a sleep study because she wants to make sure that it is caused by my thyroid and not another underlying problem like apnea.
> 
> She has now given me cynomel and although I still have a fair few hypo probs like dry skin and hair oh and still a lot of hair loss, I must say I am starting to feel so much better and my depression is lifting. Since the 8th Nov I have managed to lose 9lb in weight too without any change to my diet what so ever... big bonus as I was beginning to worry about my ever increasing weight gain and breathlessness! Fortunately I have not had any of the other side effects listed on the leaflet from taking it so far fingers crossed.
> 
> So I am on 200ug levothyroxine and 0.025mg cynomel for now and things are looking up. I go into hospital for sleep study on the 8th of this month then I have a blood test end of December and return to see endo again beginning of January.


It is good to hear from you; long time no see! I am happy that you are taking some Cytomel. That should make the world of difference for you!

If you are on 25 mcg. (0.025mg.), that is a pretty high dose to start out with and combining that w/200 ug/mcg., that is a wholloping amount!

When did you start on the Cytomel? How do you feel?


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