Advice appreciated

Hello Forum,

Hoping for some expert advice. We are a British couple living in Macau, China. Last year (July, 2009) my wife developed Hypothyroid with a FT4 count of 1.2 and and a TSH count of 0.2445 and was prescribed to take 20mg of Levothyroxine daily until Jan 2010. Further diagnosis in this month showed a reversal to Hyperthyroid with a FT4 count of 0.870 and TSH showing 5.2305, my wife was then prescribed to take 20mg of the drug Carbimazole. The next diagnosis in March was worse with a FT4 count of 0.680 and TSH at 19.274, she was then advised to lower dosage to 15mg and 2 weeks later 10mg of Carbimazole. today's diagnosis shows a slight improvement at FT4 of 0.810 and TSH of 18.96, my wife has been further advised to lower dosage of Carbimazole to 5mg daily. The worrying aspect for us is that my wife is now 9 weeks pregnant and we are unsure to the expertise and advice we are recieving in Macau.

Neither myself or my wife are experts and I am only providing the facts that I know of above. Would anyone be able to provide an insight into my wifes condition, and more importantly does the medical advice we are receiving here sound familiar or unusual.

Thanks a lot in advance

[gimel]

There is a lot of info we need to give you, but first, we need to get from you the reference range for  those FT4 tests.  Test results need to be compared to the reference range from the specific lab that ran the test, in order to be most meaningful.

Also, would you please double check the info you listed.  I say that because the July test result would most likely be interpreted here as hyper, not hypo, because of the TSH level and the FT4 level.  So prescribing Levo doesn't seem consistent with the test results.  Further, the change to Carbimazole, in the face of an increase in TSH and a decrease in FT4 wold be directionally wrong.  Based on what you have said, I think there is good reason to suspect the medical advice you are getting.

If you will please respond with the reference range data and confirmation about the other info, then I will provide further insight as to what should be done.

[Ken76]

Hi there Gimel,

Thanks for your feedback, I will try to clear up the issues first of all: I have spoken to the doctor here again and apparantly she has always been hyper (never hypO) sorry for the confusion. Also doctor stated that she has never been on Levo, always Carbimazole.

In July last year my wifes results was FT4- 1.200 with a reference range of 0.83-1.386 and TSH result of 0.2445 with a reference range of 0.35-2.84. The lab notes of the scan stated that there was a hypoechoic nodule noted in the left lobe of thyroid, measured at 5.1x4.6x3.3mm in size. The nodule was present with hypo-vascular pattern. The conclusion stated: A hypoechoic noted and adenoma was suggested. (This is like a foreign language for me, so hopefully you can understand better) We are sure my wife was advised to take 15mg of carbimazole daily until Jan 2010 when the dosage was upped to 20mg daily.

At the end of Jan 2010 my wife had a second blood test which showed the following results:

FT4 result of 0.870 with a reference range of 0.83-1.386 and a TSH result of 5.2305 with a reference range of 0.35-2.84. Dosage of 20mg Carbimazole continued.

10th April blood test showed FT4 result of 0.680 with reference range of 0.83-1.386 and TSH result of 19.274 with reference range of 0.35-2.84. Dosage of carbimazole was lowered to 15mg daily.  On the 29th April, Result showed FT4 result of 0.810 with same reference range and TSH result of 18.963 with same reference range. Dosage of carbimazole lowered to 10mg daily.

As of 4th May, dosage of carbimazole has been lowered to 5mg daily. The doctor has advised me that my wifes Thyroid started as overactive and has now become underactive, she intend to lower dosage of carbimazole again in two weeks to 2.5mg daily and intends to get her THS down within the range.

I hope this information paints a clearer pcture and sorry for the inaccuricies previously. Your advice is greatly appreciated.

Thanks

[gimel]

I'm hoping that some of our members with actual hyperthyroidism type problems will chime in and provide you some worthwhile info.  In the interim, just a couple of thoughts.  I think that the doctor needs to do the testing necessary to determine the basic cause for her hyperthyroid condition.  This is important to know the most effective treatment.  

Also, in future testing I would insist that FT3 should be tested.  FT3 is four times as active as FT4 and FT3 largely regulates metabolism and many other body functions.  Doctors frequently resist testing for FT3 on the assumption that if they know the level of FT4 and the patient adequately converts T4 to T3, then they don't need to bother testing FT3.  My opinion is that in view of its importance why not just test and be sure.  The last point is that TSH is a pituitary hormone that is affected by many variables to the point that it is inadequate as a diagnostic by which to determine medication.  It is far more reliable to  utilize symptoms and the levels of the actual, biologically active thyroid hormones, FT3 and FT4.

[Smilerdeb]

In regards to Carbimazole (which I presume is Neomercazole) your wife should be tested every 2-3 weeks as this can make her go VERY hypo VERY quickly.
This is a safe drug to take while pregnant but Doctors also reccomend that people who are pregnant be monitored fortnightly while pregnant , the reason being that there can be problems with the pregnancy if your wife goes Hyper.

Has your wife ever been diagnosed with Graves Disease or been tested for it?
The TSI (thyroid stimulating Immuniglobulins) is the 100% test for Graves and can be done when thyroid function tests are done.(bloods).

It is important that your wife spread her dosage out over 3 times a day as the thyroid 'spikes' once the Carbimazole wears off.
I used to take mine, morning , noon and as late as possible at night.

If your wife has Graves Disease (antibodys), it is very hard to control hyperthyroidism and usually permanant treatment is eventually done but as she is pregnant, nothing will be done until after the birth of your baby.

What I must stipulate is.......
Some people are very medication sensitive( I am ) and the Carbimazole can be increased and go hypo quick or decreased and go hyper quick.
Either way...this is dangerous to the foetus and thats why your wife should be monitored very closely by an Endocrinologist and OBGYN.

With hyper/hypo, there is a risk of miscarraige (miscarriage), or premature birth.
My second pregnancy were stillborn boys at 16 weeks and my 3rd and 4th pregnancys were both born at 32 weeks (and doing great thanks to technology).
DO NOT be fobbed off...any sign of labour, get your wife to the hospital and any sign of fast heartrate , get to the ER.

It is better to err on the 'better safe than sorry' in regards to Hyperthyroidism.
It is very important for those levels (thyroid) to be stabilised.

Demand bloods done every 2 weeks until the levels stabilise.
Demand FT3, FT4 and TSH to be done at EVERY test as its the FT3 which is the dangerous one in Hyperthyroid.
Also ask the Doc for beta blockers as this helps the FT3 from going too high and also helps with fast heartrate.

If you read and research as much as you can on hyperthyroidism, you and your wife will have a beautiful baby.

BUT first things first.,,,....get that TSI blood test done.

Tell the Doc for your own peace of mind, that you want labs done every 2 weeks until they are stable.
Dont take NO for an answer.

I hope that helps you somewhat.

You are more than welcome to read my journals and hopefully gain some insight into hyperthyroidism.

t her labs here every 2 weeks and others will jump in and comment.
Good Luck to you and your wife and post her labs here every 2 weeks.
Also ask for Vit.B12, Calcium, and Vit. D to be checked.
Most hyperthyroids are deficeint in these vitamins.

Hugs ((((   )))))

[Smilerdeb]

Forgot to mention.......in Hyperthyroidism, the thyroid 'dumps' betwee 2-4am every morning so sweating while asleep and restless nights are normal.
Thats why I used to take my Carbimazole 3 times a day (10mg morning, 10mg, lunchtime and 20mg at night ) to combat the 'spikes' of the thyroid dumping hormones.

[ChitChatNine]

WELCOME!

C~

[Super_sally888]

Hi,

Given the high TSH and the pregnancy I would think that the doctor would stop the carbimazole completely.

TSH target in pregnancy is 1 - 2, and FT4 should be high in the reference range.

How far pregnant is your wife?

Your unborn baby is in grave danger with this sort of result.  Hypo is very dangerous for pregnancy and the development of the baby.  The baby cannot make it's own thyroid hormone during the first 2 trimesters and needs FT3 and FT4 from the mother for it's normal physical and (particularly) mental development. (On the other side mild hyperthyroid in pregnancy is often only monitored not treated).

In my opinion the carbimazole should be stopped immediately.

They should monitor after 1 week of stopping meds.  If TSH is still so high (and the FT4 so low) your wife needs to start replacement thyroxine.  This is quite critical!

I am not a doctor.  however, i did go through pregnancy with hypothyroid.  I cannot emphasise strongly enough that your wiffe should get a second or even third opinion if your current doctor doesn't step up to the base and start managing your wife appropriately.

Even further, I would question the original diagnosis of hyperthyroid.  The original FT4 of 1.2 was within, not outside the reference range.  Low TSH is generally only of concern if the FT4 (and FT3, which wasn't ever tested) are outside range.  Your wife's FT4 is now well below range.  FT4 (and FT3) should always take precedence over TSH, and if they are fine (within range) and the patient has no symptoms then low TSH should be monitored, but not treated.

I  hope this helps.

Best wishes to you and your wife.

[Smilerdeb]

QUOTE.....As of 4th May, dosage of carbimazole has been lowered to 5mg daily. The doctor has advised me that my wifes Thyroid started as overactive and has now become underactive, she intend to lower dosage of carbimazole again in two weeks to 2.5mg daily and intends to get her TSH down within the range.... UNQUOTE.

Your wife is drug -induced HYPO.

If your wife has hyperthyroidism and is tested positive for Graves, then it would be madness to come off the Carbimazole.
Decrease it by all means but come off it at the moment...No.
Within 2 weeks of stopping it, your wife would be hyper again and levels dangerously high.

I urge you to keep her monitored every 2 weeks.

Your wife should never have been prescribed Levo from the start.

[Ken76]

Hello,

Firstly, thanks to everyone for such good feedback, there is a lot of information to take in here, some quite contrasting.

What I think I will do, is immediately arrange a consultation with our doctor to a) ask some serious questions, b) get a blood test done to determine cause (Graves) and c) demand she is now tested every two weeks for FT4 and FT3.

Smilerdeb, I don't think she was prescribed Levo from the start, my doctor tells us that it was always Carbamazole (even though she wrote on the first diagnosis letter that my wife was prescribed Levo). She claims this was a typing error.

After all this information I must be honest and say I am quite worried now, but I will take every step necessary to ensure the welfare of my wife and unborn child.

Sally, my wife is around 9 weeks pregnant and the doctor stated she would gradually like to take my wife off the carbimazole.

Thanks guys, appreciated

[Super_sally888]

Ken,

I am the one with the contrasing info.

However, I do agree with smilerdeb that if your wife really is hyper then the meds need to be reduced very carefully.

But this also has to be balanced against the health of the baby.

Your wife's is currently (med induced) hypo.  The TSH is way too high, and the FT4 is way too low for healthy pregnancy. This is very critical to baby's health.

Bottom line is very close and frequent monitoring.  Maybe even more frequently than every 2 weeks just now.  More frequent testing would at least show that things are going in the right direction and adjustments can be made more quickly / appropriately.

You need a very frank and open discussion with the dr.

Best wishes.

Let us know how you and your wife go.

[Smilerdeb]

Its good Ken that now others have posted , you can at least have some idea as to what to ask your Doc.
I wish you both (and bubs) well and monitored properly and carefully...your wife should be fine along with bubs.

Feel free to post here as there are plenty of forum members who all have excellent advice.
It may seem confusing at present but the more you research, the better.
All the best and hope to see you both on the boards,

P.S
Whats your wifes first name?