High ferritin levels & off thyroxine

[Topsy147]

My GP took me off thyroxine after 20+ years as my TSH rate was rising. Since then my ferritin levels have been rising since Feb 2018 and are now 625. All blood tests are normal and a private blood test showed thyroid antibodies but TSH is normal. My GP doesn't think thyroid antibodies are a problem and won't retest. I dont feel well with constant headaches and foggy head and BP is erratic. My resting heart rate is 53/54 but drops to 42 at night. What is going on? Should I be worried?

[humanbean]

My GP took me off thyroxine after 20+ years as my TSH rate was rising.

Your GP is an idiot. If your TSH is rising it means that you are becoming MORE hypothyroid, not less, and you need a higher dose of Levo than what you were taking, not being taken off it altogether.

I would go back and see a GP as soon as possible and get yourself put back on Levo. In your shoes I would consider making a complaint about the GP who took you off it in the first place.

[Topsy147 in reply to humanbean]

I think I may have made a mistake in my post by saying TSH was rising. My GP said my TSH showed I was having too much thyroxine and was going towards an overactive thyroid. Thats why he took me off bit I havent felt well since.

[humanbean in reply to Topsy147]

People who are diagnosed with hypothyroidism tend to have :

TSH High

Free T4 Low

Free T3 Low

As someone gets more hypothyroid the TSH gets higher still and the Free T4 and Free T3 get lower. The purpose of treatment is to raise the Free T4 and the Free T3 so that the patient feels better. In the process of raising Free T4 and Free T3 the patient's TSH will get lower.

.

People who are diagnosed with hyperthyroidism tend to have :

TSH Low

Free T4 High

Free T3 High

As their condition gets worse the TSH gets lower, the Free T4 and the Free T3 get higher still. The purpose of treatment is to lower the Free T4 and the Free T3 so that the patient feels better. In the process of lowering Free T4 and Free T3 the patient's TSH will rise.

.

The way to get an idea of how hypothyroid or hyperthyroid someone is is to look at Free T3 which is the active hormone that the body needs. Unfortunately doctors don't look at Free T3, they look at TSH. Several things can make TSH change when the person is hypothyroid or hyperthyroid. However, if the patient has had a low TSH for a very long time it might eventually become "stuck" and won't rise to an "informative" level.

It isn't possible to become hyperthyroid or develop an overactive thyroid if you are hypothyroid. You can be over-medicated, which will mean that TSH is very low. But that is not the same as being hyperthyroid or overactive.

Also, if the cause of your hypothyroidism is autoimmune in nature then TSH can swing from high to low to high to low very unpredictably as the autoimmune condition causes your immune system to attack your thyroid.

All blood tests are normal

This idea that tests are "normal" when they are in the reference range or even close to the reference range is very damaging to patients. If you feel at your best when testing X gives a result 70% of the way through the reference range, then that is "normal" for you. But if your level is only 10% of the way through the range then you won't feel "normal", although your doctor will declare you to be "normal".

Another problem is that just testing TSH isn't adequate as a test of thyroid function. It is Free T3 which shows if you are hypothyroid, are well, or are hyperthyroid.

If your doctor never tests Free T3 and relies solely on TSH then he/she is treating you while effectively wearing a blindfold.

[rosyG]

Just replying to part about heart rate. Mine varies from 42-55 bpm resting and has been in 30s while sleeping (24 hour recording) so don’t worry As long as you aren’t getting pauses on ecg. You’re ok!!!

[SeasideSusie Remembering]

Topsy147

Did your GP say you were to come off Levo permanently, or did he say he will retest in a few weeks' time?

If you post all your test results with their reference ranges we can comment, and the replies you get here from experienced patients will be more informed than what your GP may tell you.

[Marz]

So you have been off Thyroxine for two years - is that right ? Have been reading your previous posts. Diogenes did suggest with low in range T3/T4 you would soon suffer symptoms a year ago. Diogenes is an Independant Research Analyst involved in thyroid research ...

Others also gave good advice in your earlier posts/threads. Are you able to find them ?

[Topsy147]

Thanks for all your replies. Looks like I need some more private blood tests to see what my T3 and T4 is as well as my thyroid antibodies as my GP won't do them.

[shaws Administrator in reply to Topsy147]

It is 'free T3 and free T4' which is slightly different from T3 and T4 just to confuse things even more.

The following link is from TUK:-

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

Are you aware that blood should be drawn at the earliest? fasting (you can drink water) and allow a gap of 24 hours between last dose of hormones and the test and take it afterwards.

Quite a number of doctors don't test antibodies as they believe that if we've been already been diagnosed as hypothyroid, that is sufficient. They are unaware that antibodies also attack the thyroid gland until we're hypothyroid. If we're aware we have thyroid antibodies going gluten-free can help reduce them.

[shaws Administrator]

"My GP took me off thyroxine after 20+ years as my TSH rate was rising" raised my blood pressure. If TSH is rising we need an increase in dose, not withdrawn altogether.

Change your doctor otherwise you are going to be very unwell indeed.

How idiotic are these comments from those who are supposed to have 'certificates!!!!" to be able to resolve patients disabling clinical symptoms.

To remove someone from their thyroid hormones altogether I think would be entitled not to be called a physician. Once diagnosed we must take hormones for a lifetime.

[McPammy]

I would have thought that if your levels are rising (I read your amendment that it’s not your TSH rising rather your T4 levels) that he would reduce your Levothyroxine then retest after 6/8 weeks, not stop completely, as stopping completely can have adverse effects.

Do you have most recent bloods?

[Hafa]

I'm thinking about the ferritin level. Is this recent or have you always had higher iron levels (perhaps not realized it?) Haemochromatosis is a genetic disorder that particularly affects people of Celtic origin and can start to show symptoms between 30 - 60 years of age. nhs.uk/conditions/haemochro...

[jgelliss]

Usually high ferritin levels signal some liver issues . Ask your Dr to check your liver Enzymes. The symptoms arise because iron accumulates in the organs and leads to destruction and loss of normal function. Other causes of a high ferritin level are chronic inflammatory conditions such as liver disease or rheumatoid arthritis, or some types of cancer. Don't ignore it please .

ncbi.nlm.nih.gov/pmc/articl...

[Esselstyn]

have you haemochromatosis, the treatment for this is giving blood, remember there is more iron in plant food, but it is absorbed differently, if you eat animal source iron it goes straight into the blood stream, if you eat plant source iron you absorb what you need, I suppose except if you have haemochromatosis. It is not good to have too much iron, haemochromatosis is serious but easily corrected, I suspect if you had it your doctor would know, its the most common genetic disorder, ask him.