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Avatar universal

I have no thyroid....why is it so hard ro regulate my dose?

My thyroid was surgically removed about 20 years ago.
I have been on 112 Synthroid.
Had one dosing problem about 7 years ago, similar to this,eventually was returned to 112 and was fine till about a year ago.
Last year my TSH dropped  to 0.00# levels, and my Dr reduced Synthroid in steps till we got to 75. I refused to go lower and was sent to Endo. Endo tried Synthroid supplemented with T3, which was stopped due to heart rate elevation.
After not getting the TSH to raise, we stopped all synthriod, after 4 weeks or so TSH was way up, 400's I think, we started at 50 Synthoid. Went to reg DR for vertigo...no diagnose, maybe dehydrated. Next blood test had TSH lowering just some, went to 75 Synthroid. I had trouble controlling very soft bowels...major change..interfered with work/life...went to 50 + 1/2 of a 25. Last bood test was sort of high TSH with normal T4.  I feel like ****...hands ache, tired, feel like crying, legs starting to hurt, etc.  AND
This current 75 is the dose that a year ago I was told was too high.  I have asked about matters that would affect TSH non-production and of T4 to T3 inhibited production. And have been told this does not seem reasonable to look into.
I have no thyroid...why is it so hard to regulate my dose.
9 Responses
173351 tn?1201217657
Are you going through menopause?  I ask because changes in other hormones could throw out your thyroid hormone regulation.

When estrogen levels are constant - it doesn't affect thyroid levels BUT *IF* for example you started taking birth control pill or estrogen replacement for menopause then you may need increased dosage of thyroid.  AND *IF* your estrogen levels drop naturally due to menopause it is possible you won't require as much thyroid hormone.

Have you been losing weight recently before this all came up?  If you lose weight then not as much thyroid hormone is required - the opposite is true too - if you gain weight then it is likely you will require an increase in thyroid hormone.

Do any of these things apply to you?

Unfortunately I am told that we (I have no thyroid either) will have fluctuations in thyroid hormone requirements over the life span.  Sounds like you've had a pretty smooth run over the 20 year span you describe - wow - I hope it works out like that for me too!  I only had my Thyroidectomy last year and haven't found the right dose yet.

I've read that T4 to T3 conversion problems are rare - have they been monitoring both FreeT4 and FreeT3 when you have your TSH done?  
There is a site written for doctors by doctors about all aspects of thyroid manangement - I remember a whole chapter on this topic.  Only thing is it's all written in medical terminology... but probably still worth a look at.  Maybe just keep a medical dictionary open (there are many online)
***IF*** you find something there worth following up with your doctor - hopefully they will look at it because it is coming from a respectable site.

The Chapter is called "Thyroid Hormone Resistance Syndromes"

Best wishes and wellness to you!!!

Avatar universal
Thank you....I was so nice to be heard and be answered with realistic and appropriately stated information. We did consider the concerns you brought up.
  I have specifically brought up my other meds to the Doctor, Celebrex, and Nortiptyline for a root nerve injury in my neck, Lexapro for an inherited condition: both genetic and environmental; ]I see a counselor on a once a month basis to keep from backtracking.] Dr. says none of the RXs interfere.
I can understand minor adjustments, especially in the light you mentioned. And I am in the menopause range. I've had no issues after the peri-menapuse stage but am still not considered totally beyond the process. So that issue is probably there.
   What bothers me is that My TSH just drops to barely registering amounts. It only after stopping synthriod totally does it start to show life.  Was still at 0.0X range when we went from 112 to 75.
I'm not convinced that TSH is working properly as we did have to shock it into responding.
  I did have serious radiation to face and buttocks as a infant and toddler due to a birthmarks (hemangioma that bleed) and I think I just have non-typical reactions to things, but am a healthy person. For example, I had ocular migrans and a loos of visual memory from an antidepressant, Serzone, have been diagnosed with MONO 4 years after the first bout, couldn't drink alcohol after the birth of my first child etc...  
  My  Endo is a DO so I really thought he would not be so TSH rules ish. But my next blood work is just for TSH and Free T4. He dropped that T3 with no explanation to me.
Thank you for giving me a place to vent, I'm tired, my hands ache, I'm not mentallly sharp ... just "talking" helps.
Maybe I am reading in, but I really think that once one is dealing with depression in a healthy manner which in my case means it will be in my chart,
Avatar universal
Opps... the thought does continue...Doctors can't help but thinking you are somehow not the same person you would be if it were not in your chart..and it changes their confidence in the validity of what you say.
173351 tn?1201217657
Oh my doc dropped FreeT3 off tests now too - I think once they have seen a few normal labs that indicate there is no conversion problem they don't bother any more.  They don't seem to place much clinical significance on T3 levels unless you are at risk of Thyroid Storm - like when your TSH was 0.0X.  
173351 tn?1201217657
Seriously -I can't believe that your Dr. says none of the RXs interfere!!! OMG!!!
(I believe you just can't believe the doc actually said that!)

This is why it is soooooo important that we print out the prescribing info for ALL our medications - doctors don't know everything, they are human and make errors too!!!!  

Nortiptyline (Tricyclic antidepressant)
******** I suspect this is causing your current problem with dosing of thyroxine!!!!********
This is what the prescribing info says;
Concurrent use of tricyclic or tetracyclic antidepressants and levothyroxine may increase the therapeutic and toxic effects of both drugs, possibly due to increased receptor sensitivity to catecholamines. Toxic effects may include increased risk of cardiac arrhythmias and CNS (central nervous system) stimulation; onset of action of tricyclics may be accelerated.

Lexapro (Selective serotonin reuptake inhibitor, SSRI)
SSRI's in patients stabilized on levothyroxine may result in increased levothyroxine requirements.

Time to phone the doctor I think - good luck!!!

173351 tn?1201217657
It would be a good idea to have a look at what other medications you take;

FYI - Conversion Issues
Drugs such as amiodarone and beta blockers (usually drug name ends in 'ol' eg. propanolol.) may decrease the peripheral conversion of thyroxine to tri-iodothyronine - and with no thyroid we rely entirely on peripheral conversion.  

Sympathomimetic Drugs may increase the effects of both drugs (Thyroxine & Sympathomimetic), which may lead to a risk of coronary insufficiency due to the heart having to work so hard all the time because of the effect of the drugs.

Sympathomimetic Drugs are ones that mimic adrenaline or noradrenaline.  Bronchodilator medications (such as Salbutamol used for Asthma, COPD), Adrenergic stimulants, and vasopressor agents all fall into this category.  

For your consideration - if you are taking any of these type of drugs as well as thyroxine please raise these issues with your doctor.

TO EVERYONE TAKING THYROXINE - Please read the prescribing information for your medication, it is important stuff.  You can easily find it on the net - just google.  Print off a copy for future reference!
Avatar universal
So hard to wrap my mind around the fact that your doses are so limited. Can you get Synthroid? Can your pharmecy special order it? I'm not saying the synthroid brand is the best but staying with one manufacturer is really important. There are variations between maufacturers. It is pretty standard to stay with one brand for dosing consistency.
I've never had alternate dosing recommended. I know I do not get perfectly equal doses when I half a pill, but my first dose was one 100 plus  1/2 of a 25, not a 100 alternating with 125. The 112 dose was produced years later.
I wish you well trying to get fine tuned, and now see you lack of options as a major roadblock. Take care.
173351 tn?1201217657
Thanks for the tips on dosing adjustments - unfortunately I am in Australia and we only have three strengths available (50, 100, 200) - yes you read right.  So for fine dosage adjustments we have to use alternate dosing ie. 100mcg Mon & Fri 150mcg every other day that week to average out over 7 days as 135mcg!  Talk about pain in the behind!  (That' what I want to do, currently taking 150 ever second day 100).  My GP doesn't seem very familiar with alternate dosing but I have an appointment Thursday as my TSH has risen to 3.4 (he recommends no action eek!) and I'm finding myself a bit slow, lacking motivation and needing 9-10hrs+ sleep a night.  But your insight on finding the right dose confirms for me that I must push to do alternate dosing to get my TSH down.  

If it is the nortriptyline causing your dosage troubles, (which I highly suspect) I doubt you'll easily get your levels stable again very quickly.  But then again you have done it before... so who knows?  
Best wishes again!
Avatar universal
Good insight on the T#.
My Nortriptyline is the smallest of doses, below therapeutic. It's being used as a muscle relaxant. and I have been on it for years. However,
Once my thyroid is somewhat stable, I'll see about dropping that. I have already spoke with Dr about minimizing meds as I age. The depression does make pain more of an issue, but again switching to the new Anti-depressant is on hold until the thyroid is in better ranges.  Thanks. I will be seriously looking at the site you recommended.
Oh, in my self absorption, I missed that you are still adjusting to find a dose. One thing I do know is that the jumps between standard pill dosages is not always optimal. Using half of those 25 pills has been essential for me. Back on the late 1980's there was no 112 pill, so we did the half pill thing 100 + 1/2(25), currently the jump from 50 to 75 as we build played havoc on my bowels. But stepping from a 50 to 50 + 1/2(25) or 62 and then to 75 is better for me.
Have a good....
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