Confused! Thyroxine levels!

[Cazzalouise]

Hi I'm Cazzalouise I have just had my latest blood tests TSH 0.16, Free T4 14.9 and FreeT3 5.5. I'm on 100 micrograms of levothyroxine. I'm still tired depressed and fat! Now they want to put me down to 75 much of Levo! They also found very high amounts of prolactin in my blood and still do but that seems to be ignored! I would love to try T3. Any ideas or comments would be gratefully received.

[IC-17]

Well, I have been on levothyroxine 100 mcg for years and I was putting on weight gradually. I finally went to endocrinologist privately and he put me on Nature Thyroid, I have lost a stone in about 6 months, I also feel better, slow progress but better down then slowly up as in the last 5 or 6 years. I am hoping that this trend will continue as I need to loose at list two more stones. The only inconvenience apart form the costs is I need to take the tablets three times a day at least 2 hours after a meal and at list half an hour before a meal, it means I need to constantly remember when I have eaten, plan, etc. I do still think it's worth the inconvenience. At the moment I am taking 2 grains in the morning and also at lunch time and one before dinner. I am still seeing the specialist in order to perfect the prescription. It is an expensive rout, but I have got so desperate and fed up with being so very overweight, I had to do something.

[Cazzalouise in reply to IC-17]

Thankyou for replying where did you go?

[Cazzalouise in reply to Cazzalouise]

The weight is truly getting me down and I'm too tired to do my housework let alone exercise!

[Cazzalouise]

Can anyone decipher my blood test results in lay and terms please! Why do they want to lower Levo when my symptoms are getting worse?

[Angel_of_the_North in reply to Cazzalouise]

Bevause they are ignorant pigs who think that TSH is important and yours in just under range. The reduction will probably do nothing for your TSH but will lower your Ft4 anc Ft3 and make you feel worse. You might want to take a copy of the Dr Toft article (from [e-mail]) to your next appt. It explains that some peopel need suppressed TSH and even overrange FT4 in order to feel well and that is OK as long as T3 is within range.

You don't give any ranges so no one can really comment. But based on common UK ranges your TSH is slightly under range, your FT4 is near the bottom of the range when it should be near the top and Ft3 is just about where is should be - but can't be sure as you didn't put the ranges in. Low Ft4 and higher Ft3 suggets that your body is flogging the thyroid as hard as it can to make more hormones - you'd expect TSH to be higher, but some people always have low TSH when on meds, and high prolactin suggests that there is a problem with the pituitary (where TSH is produced) so perhaps TSH just can't rise.

[Dora123]

Can you please post your reference ranges for your results, too? It would be super helpful. I would assume from just these numbers that they want to lower your dosage based on your TSH alone because it might be low in the range or below the range (just going off of my own TSH reference range from my doctor, but that might be different with your lab). This isn't necessarily the 'right' thing to do, and I think a lot of people struggle with this, so hopefully someone with that type of experience can come along and advise.

[Cazzalouise in reply to Dora123]

That's all they sent me that's why I'm so confused!

[Cazzalouise in reply to Cazzalouise]

They are my latest results

[Cazzalouise in reply to Dora123]

Try haven't given me a range to go by! So frustrating! I didn't realise there are different ranges. I was hoping to get on T3 that seems to solve a lot of problems. But instead they are lowering me to 75 mcg levo!

[Dora123 in reply to Cazzalouise]

I'm guessing "they" is your GP? You should be able to call them and ask for the ranges which they should give you free of charge. Depending on the GP this might require a phone call from the GP but sometimes the receptionist will just give you the ranges if you already have the results. You might have a hard time getting T3 though. I'm in a similar boat and my TSH is within range and T3 is lower than yours.

[Cazzalouise in reply to Dora123]

Hear results have come from my consultant at the hospital! Which makes it even more unbelievable and annoying!

[SeasideSusie Remembering]

Cazzalouise

TSH 0.16, Free T4 14.9 and FreeT3 5.5

They want to reduce your Levo due to your (probably) below range TSH. You should always ask for the reference ranges, wherever the results come from, tests can't be interpreted without them.

What they are doing is dosing by TSH and ignoring the FT4 and FT3. We don't know where in their ranges your free Ts lie, but they are very probably within range.

Here is some information that you can discuss with them, and either politely request to stay on 100mcg Levo or just refuse to lower due to this information.

From thyroiduk.org.uk/tuk/about_... > Treatment Options

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

Booklet written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It is published by the British Medical Association for patients. Available from pharmacies and Amazon for about £4.95. It might be worth buying, highlighting the relevant section to show your GP and Endo in support of an increase in Levo.

Also -

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

Email [e-mail] for a copy, print it and highlight question 6 to show your GP and endo in support of an increase in Levo.

[Cazzalouise in reply to SeasideSusie]

Thank you so much I will find out the ranges and post them on here. It's wonderful to realise people are so well informed and helpful. I finally don't feel alone.

[Angel_of_the_North]

That result looks decent - but high prolactin suggests a pituitary problem which needs an endo referral - a pituitary problem would mean that GP should never take TSH into account again (which woudl be good for you)

[Cazzalouise]

Thank you so much to you all I have learnt more today than from all the so called doctors.

[Cazzalouise]

The prolactin was off the scale then went down but not much! Now they don't mention it. They have given me no reason for the high prolactin.