Still Clueless

[Pictur]

I am still having thryoid issues 4 years later. I cannot understand why my dr keeps changing my dosage. My dr retired in Dec so this new dr did a tsh test, results showed it was 0.03. I was taking 100 mcg of Levothyroxine at the time. She immediately dropped me down to 70 mcg. Test results in Mar showed TSH 0.23 (0.35-5.00), T3-4.3 (3.4-4.9) and T4-18 (11-23). Again she reduced my dose to 50 mcg. Test results from May were TSH-4.86, T3-3.5 and T4-12. Ranges same as above. I did not take any medication within 24 hours of testing, no biotin and tested before 9.am. I know my ranges are way off and I am feeling the effects for sure. I have upped my dose back to 70mcg, I felt much better there. My dr. Is only concerned about getting the TSH in range. What are your suggestions as far as dosage goes.?Should I ask to go a little higher than 70mcg. Is there a 75 or 80 mcg dose that would perhaps up my tsh without lowering my T3 and T4.plan on going to a walk in clinic with my results. I need this prescription refilled soon and need your advise. Thank you so much for taking the time to advise me. I really appreciate it. You are the people I trust, not my dr.

[greygoose]

Highly unlikely that you can raise your FT4/3 without your TSH dropping. The three hormones are tied together. TSH is a pituitary hormone, and the pituitary produces TSH when it senses that there is not enough thyroid hormone in the system to stimulate the thyroid to make more thyroid hormone. When there is enough, it stops making it - why would it continue if you don't need it?

A low TSH does not automatically mean you are over-medicated. I wish doctors could get their heads around that. It can just mean that you have enough. But, it is also possible that the TSH is suppressed but you don't have enough thyroid hormone. The TSH is a very bad indicator of thyroid status. But, doctors have been taught in med school that the TSH tells them all they need to know, when in actual fact, it tells them very little/nothing at all. This is a universal war that we're all fighting: Stop the TSH Worship! Hypo Patients of the World Unit!

[DippyDame in reply to greygoose]

Stop the TSH Worship! Hypo Patients of the World Unit!

Hear hear!

[Anthea55]

From the Thyroid UK website you might find this link interesting.

thyroiduk.org/further-readi...

It's about the 'Myths of Hypothyroidism'. Several of these are about TSH. They should be mandatory reading for GPs, but of course they are not.

My TSH has been suppressed for years.

[Pictur in reply to Anthea55]

Thanks so much. Very interesting read for sure.

[radd]

Pictur,

I agree with gg in that as thyroid hormones go up, TSH goes down .

I understand what you are asking but any TSH level that is acceptable to your doctor will only yield inadequate thyroid hormone levels to you. It is at this stage that many members start sourcing their own Levo and self-medicate with members input, as the realisation sets in that your doctor doesn’t understand even the most basic thyroid physiology and therefore will be unable to make you well.

[SlowDragon Administrator]

Also get your vitamin D, folate, ferritin and B12 levels tested

All this inappropriate chopping and changing dose by doctor will result in low vitamin levels

What vitamin supplements are you currently taking

[Pictur in reply to SlowDragon]

I did ask her to test my Ferratin, Folate and Vitamin B. Her reply was that they have no bearing on my thryoid. I am currently taking Vitamin D, Vitamin B12,Magnesium and Fish Oil. I need a dr to request these tests and if they don’t believe they are necessary that’s all she wrote. I did find a test in 2021 where Ferratin was 131 (12-289), Vitamin B12 was 677 (over 200).

[humanbean in reply to Pictur]

Your doctor is totally wrong.

The thyroid hormones are T4 and T3. T4 is one of the hormones produced by the thyroid. T3 is also produced by the thyroid but only enough to fill about 20% - 25% of the body's requirements. The rest of the T3 required is produced by other organs in the body e.g. liver, gut, kidneys, by conversion of T4 to T3.

Imagine you have a bag of flour in your cupboard and you want to make bread. In thyroid terms, T4 is the flour, and without doing something to do it it is inedible and can't be eaten. T3 is the bread, which is useful and edible.

T3 is what makes people feel well if they have the right amount, hypothyroid (underactive) if they have too little, and hyperthyroid (overactive) if they have too much. TSH doesn't make people feel anything. If your level is very low or very high it doesn't make you feel ill. It is the wrong levels of T3 that does that.

One of the (many) problems that can affect people with thyroid disease is they find it difficult to convert T4 to T3. In order to do that conversion they need good levels of iron and ferritin (iron stores), vitamin B12, folate, and vitamin D.

People with underactive thyroid often have low levels of stomach acid, and so their bodies don't break down food and extract nutrients from food very easily. As a result nutrient levels run low.

Any essential nutrients can run low in thyroid disease. Even though they might not be necessary for conversion, they are required for other things that affect quality of life - magnesium, selenium, zinc, potassium etc...

[Neon65]

Hi, Hope you get some answers soon, as my doctor says very simular..

[Nanny23]

My TSH stays depressed. I found out after my dr. Retired I have secondary hypothyroidism. My pituitary doesn’t send the message to my thyroid. I don’t really understand it. My dr. Says it’s treated the same.

[Sparklyjenson]

Hi, I take 75mcg, so it’s definitely possible to increase it to that.

[tattybogle]

70 mcg. Test results in Mar showed TSH 0.23 (0.35-5.00), T3-4.3 (3.4-4.9) and T4-18 (11-23).

These results on 70mc were actually fine , the TSH is not so far below range that there is any need for the GP (or you ) to worry about anything.

there was a very large ,long term study done on patients on levo , which found that TSH between 0.04 and 0.4 did not have any greater risks than patients who had TSH 'in range'.

Below 0.04 the associated 'risks' did rise quite sharply , so keeping your TSH above 0.04 seems a reasonable aim if you can find a dose which keeps it there and you still feel well.

At 70mcg your TSH was 0.23 which i don't see as being any sort of problem .. (it's a long way from 0.04 to 0.23 in TSH terms )

if it was me i'd go back to 70mcg and see how that dose feels over about 3 months ,then re test.

For link's to that long term study , and other discussions about low TSH /Risk /Quality of life ... please see my reply to this post (3rd reply down) healthunlocked.com/thyroidu...