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.075 Levoxyl over over past 9 years, TSH increasing and symptoms coming back

Questions for friend w/o MedHelp acct.


28 year old female. Diagnosed w/ Graves at 15. Thryoid removed at 17. On .075mg of Levoxyl since 1999.

Medications:
Yasmin for last 2 years
Sertraline (OCD) for 1 year - 100mgs (change from 75 to 100 4 months ago)
Xanax for 1.5 years (.5mgs as needed - taken rarely)

Recent Medications:
Vitamin D - started 4 weeks ago
Percocet 5/325 - two weeks ago, tried briefly for migraines, dc after 2 days due to nausea
Tylenol 3 - also for tried for migraines, tried 1 weeks ago, dc after 1 day due to increased pressure in cranium and neck, and nausea
Acai Berry Extract Supplement 500mg/daily - started 3 weeks agoSymptoms have been under control up until the last 8 weeks.

Current symptoms developed 8 weeks ago, and have increased in severity over time:

Appetite Increase
Headaches
Lightheadedness
Tingling in extremeties
No fever, but feelings of extreme body temp. change
Excessive fatigure during the day
Insomnia
Tremors in hands
Night sweats


TSH TRENDS:

2007 TSH level was approx. 2.25

Sept 2008 TSH was approx. 3.6

March 2009 TSH was approx. 4.5


Her .075mgs of Levoxyl has never been adjusted over the past 9 years. Could the increasing TSH levels and symptoms be due to increased tolerance to Levoxyl over time? Or does she just need more as time goes on? Or could one of the recent medications be the cause of these symptoms?

She was most comfortable when her level was at the 2.25 range. Also, he hospital/doc goes by a TSH range of .5-5.0 rather than the .3-3.0 range. Should this be of concern?

Please offer your thoughts on the case. Could one of the meds be potentiating the effect of the Levoxyl, hence to higher levels. Or could she just need less of it over time?

Thank you in advance.


4 Responses
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Avatar universal
Forgot to mention.....
A womans body goes through hormonal changes every 7 years.....worth considering that fact too.
Helpful - 0
Avatar universal
With the TSH going higher....if the Ft's are within the high top of the range (which I assume they are) then your friend needs MORE T4 med.
There are many reasons why the TSH goes out of 'whack'...even good old stress can do it.
But if the Ft3 & Ft4 are within normal ranges then an increase in T4 med is adamant.
Sometimes the female hormones (or lack of) can change the dosage increase/decrease need and so too , can different foods.
As long as the supplements and vitamins are taken a good 4 hours apart from the T4 med, then I see no problem.
Maybe your friend hasnt really been monitored a lot because as the years have gone by, she has got used to the 'cr@ppy' feeling.
Sounds strange but true.

I would be getting her to go back to her Doctor and getting her vitamin deficiency tests done and also her 'antibodies' checked as they can also 'disturb' the balance.
At present I have the flu and my TSH has gone up a bit because of it when it has been stable for months, but my FT's are still the same and at a comfortable level.
Other than that, I have been fine on a T4 med but there was one stage where I honestly believed I had conversion problems ...only to find out it was vitamin deficiencies.

But let me tell you one thing........through all the garbage of RAI, keyhole TT,Thyca etc.....if at any stage I felt I needed a T3/T4 combination, I would be first in the queue.
I am one of those people who will research everything and then weigh it up.
If I needed a combination med to have 'quality of life', I wouldnt hesitate and wouldnt stop hunting for a Doctor to prescribe it either.

Your friend is currently going through the 'crossover' symptoms at present which means she feels both hyper and hypo because her TSH is higher than it should be and her Ft's are normal.
A common occurrance with a high TSH.

Its a horrible feeling to be hot and clammy from the neck up and cold from the neck down but thats how she would be feeling at the moment. The tingling is from the 'hypo' symptoms.
Its basically the TSH that 'controls' the symptoms.
She should bump up the T4 med a fraction for 3-4 weeks and then re-test her bloods.
But only a Doctor can actually advise her of the dosage.
If it was me, I would go......
Mon. Wed, Fri  = 75mcg and Tues, Thurs, Sat, Sun -= 100mcg.

She will experience the same hyper/hypo feelings for at least a week before she notices any difference in her symptoms and it IS important she does all this on the advice of her Doctor.
Good luck...let us know how she goes.
Helpful - 0
393685 tn?1425812522
If you pull up information on the YAZ product you can find information on that - with any birth control - that it can alter a TSH level ( increases it).  I haven't dug very deep into that - much I have seen some information.

With absolutely no thyroid left from surgery the dose of Levo seems pretty low to me. I see many people here on the forum that have had either surgery or RAI and they seem to be on a much higher level than .75.

I, myself, peeked to a .200mcg - prior to switching. ( Dx - Graves 2003 - RAI 2004)

The TSH seems to be climbing - but Gimel may be right one - asking to see more lab work. A TSH cannot be the only test to look at to decifer if the patient is stable or not. If you want to consider the TSH as a guide - then many patients find a TSH between .5 to a max of 1.2 is best for many thyroid patients. Need more tests.

I don't think there is a tolerance to Levoxyl, but generic thyroid medication - can sometimes not be as effective as brand name Synthroid. I stopped by my pharmacist yesterday and spoke to him about some thyroid questions. Even though I no longer take synthetic T4 meds, we talked about his wife and generic Levo.

This has come up many times on the forum about generics. They are processed very differently from different companies. There can be a range of dosages done - processing the tablets, so sometimes different fillers or small levels of dosages levels may be different when getting your prescriptions. If you take Walgreens for example - they order Levo from there suppliers to stock there shelves. Depending on the "company" that processed it, and if cost is lower one month to the next -  from one company to another- that is the product/company they get in to fill for their patients on the next order off the truck load. Thyroid medications in the body are sensative, so if you are filling generics - it can be different meds - from one month to the next and will effect your symptoms of the disease and your Thyroid lab levels. If you stick to a T4 med only - I believe Synthroid ( name brand) is the better choice for some.

Now - I read - more and more - on people with no thyroid function - due to birth - RAI - or surgery. There's nothing there to function normally.

Some find that they just aren't converting enough Free T3 off there T4 meds to free them of all their symptoms.

Chitchatnine- Smilerdeb - Kipland ( members here ) for example have no thyroid (chitchat has only 1/2) and they do well on just T4.

People like me and a few others here introduced T3 (Cytomel) or a T3/T4 med (Armour) and found great success ridding them of their symptoms and helping them increase their energy levels to lead normal lives again.

If there has been no stability in the nine years - then there are a few things I would consider if it was me. I would look into another doctor - someone with particular homone training that is open to more than just following an outdated TSH range. And also think about adding a T3 medication or maybe a switch to a T3/T4 combo med.

In order to really know what to do - you need to make sure labs are done appropriately and really understand where you feel best at on those numbers you are testing at.

Helpful - 0
Avatar universal
You will be getting multiple responses to your post.  For now, I just wanted to ask if any blood tests other than TSH were run?  If so please post the actual numbers and their ranges, and this will help us all in trying to answer questions.
Helpful - 0
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