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Posted (edited)

I has a total thyroidectomy one year ago and it now seems almost impossible to manage TSH and levothyroxine hormone dosage, without six weekly blood tests.

 

Following the op in November I started at 350 mcg (per week) and went to 525 mcg then to 700 mcg by January.

In April I went from 700 mcg to 650 mcg per week because TSH was 0.29 

In July I went from 650 to 675 mcg because TSH was 2.73

 

Six weeks later my TSH was excellent at 1.73, my target is sub 2.50.

 

Now, six weeks on from my last check, my TSH has gone to 4.33 and is once again out of range.

Today I've reverted to 700 (plus a one time 0.12 mcg to try and bring it back in range) and I guess I'll check again in 6 and 12 weeks.

(FT4 is 1.25).

 

My weight has been stable throughout.

 

Note: I work on the basis of weekly mcg intake rather than daily because of pill size availability, which means splitting tabs.

 

Has anyone else encountered this issue? I imagine the April and July adjustments resulted from the settling in period and the body adjusting to the new ways of working? 

 

 

 

 

Edited by chiang mai
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Posted

Sorry, I do not share your condition.

 

I presume that you are consulting a good endocrinologist.

 

I was diagnosed with hypothyroidism about 20 years ago.   About 8 years ago I began a 4 year period of moving between hyper- and hypothyroidism, now stabilised at the former.  During the 4 year period of oscillation I had 3-monthly blood work done to monitor changes.

 

Considering the half-life period of the medication you are taking, would it not be better to work on a 2-day period/cycle of dosage variation rather than a weekly basis (which is what I had to do for a period of time due to the medication pill dosage requirement and the very small pill size making pill splitting difficult)?

 

Good luck.

 

I hope someone here can offer more concrete advice.

 

Posted
2 hours ago, JimHuaHin said:

Sorry, I do not share your condition.

 

I presume that you are consulting a good endocrinologist.

 

I was diagnosed with hypothyroidism about 20 years ago.   About 8 years ago I began a 4 year period of moving between hyper- and hypothyroidism, now stabilised at the former.  During the 4 year period of oscillation I had 3-monthly blood work done to monitor changes.

 

Considering the half-life period of the medication you are taking, would it not be better to work on a 2-day period/cycle of dosage variation rather than a weekly basis (which is what I had to do for a period of time due to the medication pill dosage requirement and the very small pill size making pill splitting difficult)?

 

Good luck.

 

I hope someone here can offer more concrete advice.

 

Many thanks for that Jim, I value that sort of feedback of personal experiences, which is why I posted what I did.

 

My Endo. has a great reputation amongst her peers plus I have known her for over 20 years. My surgeon also has a very solid reputation and a great personality too.  At some point however, even the best of them decide it's time to cut you adrift and let you fend for yourself on this matter since it is ongoing, or so it seems. The last time I I saw my Endo she asked, "why are you here, you're not scheduled for another four months"? When I said it was because my numbers had changed it was like, so what, deal with it, this is not a big issue! Indeed the advice on the NHS Thyroid Support Group is to test regularly and adjust dosage as needed, which seems to be the standard advice, rather than consult with Endo's.

 

I'm not sure I understand the two day cycle you mention. My understanding is that Euthyrox remains in the blood for seven days and which means that when calculating daily dosage, you can do so using a weekly total, rather than estimating (a weekly figure of 675 per week equates to 0.96 per day when there are only individual pills in 1.0 and 0.50 which even when split, still don't meet the daily target target). My understanding also is that it takes six weeks for the TSH levels to normalise, once the daily dosage is changed.

 

 

 

 

 

 

Posted
5 hours ago, chiang mai said:

Note: I work on the basis of weekly mcg intake rather than daily because of pill size availability, which means splitting tabs.

 

Not entirely clear. I work on the basis of daily mcg and TSH has always been stable. If you need to split tabs, you split tabs.

Posted
2 minutes ago, BigStar said:

 

Not entirely clear. I work on the basis of daily mcg and TSH has always been stable. If you need to split tabs, you split tabs.

You can split 1.00 to get to 50 or 25, or split 50's to get to 25 or even, with difficulty, to 12.  But I was trying to get to 96/97 so Dr Endo said to go the weekly route...which is easier. It just means 6 x 1.00, M-F  and on Sunday, 1 x 50 + 1 x 25. A bit of a palava really.

Posted

It is normal for thyroid levels to fluctuate widely in the first year or two after thyroidectomy and to need frequent dosage adjustment. 

 

Make sure your labs are taken at same time relative to doses (preferrably before dose but at minimum, same intervals) and also to take the meds on empty stomach and separate from any other medication by an hour or more. 

 

Allow at least a month to pass after dose adjustment befilore repeating labs (exception bring if sympymtomatic) 

 

Lastky, if you are using a lab on your oen (i.e. not hospital lab) make sure it is ISO certified. 

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