Recent results

[Tanya-B]

TSH 3.01 (0.35 -5.5)

Free T4 11.5 (9-24)

Total T3 1.4 (0.9-2.8)

Can I get some feedback on these results please.

[humanbean]

I've read some of your previous posts and, just to summarise to be sure I understood, I noted that you have Graves's Disease and have had your thyroid removed but it has grown back. You've felt hyper for a long time. You were thyrotoxic (as a result of the over-prescribing of Levo as far as I can work out) and had respiratory failure in France. Hope I've got that right.

All the blood test results you've posted on this post and your previous ones show you as being hypothyroid and under-medicated, not hyperthyroid, with the exception of the time you were over-medicated on 300mcg Levo, had a TSH of zero, and suffered respiratory failure in France as a consequence.

I know you've been hyperthyroid in the past and had your thyroid removed as a result, and I know you have Graves' Disease (and I'm aware that it never goes away). But for all practical purposes at the moment you appear to be hypothyroid and under-medicated. I don't know enough about Graves's Disease to know if that will always be the case from now on.

Patients have discovered that some symptoms thought of by doctors as being related only to hyperthyroidism can also be suffered by people with hypothyroidism. For example, tachycardia (very fast heart rate) and high blood pressure are associated with being hyper not hypo. But there are plenty of people who have tachycardia and high BP while being hypo.

Another issue is being jittery, panicky, anxious, or fearful for no reason. That can be a hyper symptom or a hypo symptom. It can also be caused by having too low or too high cortisol. Doctors pay no attention to cortisol levels unless they suspect Addison's Disease or Cushing's Disease. But patients know they make a big difference to how they feel and many of us have to work on increasing or decreasing our cortisol levels - doctors don't help with this so we have to go it alone.

Having been hyperthyroid in the past, or hypothyroid and over-treated, or hypothyroid and under-treated, I would guess that your nutrients have been trashed over the years and you are probably suffering from multiple nutrient deficiencies. Several nutrient deficiencies can result in "feeling hyper" even if you are actually hypothyroid.

Doctors shouldn't be using a Total T3 test, it isn't very informative. Instead they should be using a Free T3 test.

It would be helpful if you had a full set of thyroid function tests and got some basic nutrient levels tested too. If you can pay for them privately they can be done with a finger-prick test without involving a doctor at all. The test kit has to be ordered online, and is sent to you through the post. You prick your fingers with the lancets provided to create a small blood sample and then send the blood back through the post, and results are sent to you directly via email.

bluehorizonmedicals.co.uk/T...

bluehorizonmedicals.co.uk/W...

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

Note that the test bundle I've linked (first link above) doesn't include tests for checking Graves's antibodies, it includes tests for Hashimoto's antibodies. (People can have all of them, although it is rare.)

I don't know if there is any benefit in knowing numbers of Graves's Antibodies once you've had a diagnosis. If there is a benefit then you can test this privately too, but it is rather expensive for a single test :

medichecks.com/thyroid-func...

It requires a full blood sample from a vein rather than finger-prick testing.

If you go for private testing then please post the results on the forum and ask for feedback.

I should point out that I have no medical training, I'm hypothyroid not hyperthyroid, and I don't know anything about Graves's Disease other than the little I've picked up from the forum or from some of my reading about the thyroid.

[Tanya-B in reply to humanbean]

Thanks so much for your reply. Yes I had been hyper for years due to being over medicated. When I returned from France DR Toft took me off all thyroxine for 8 weeks I then became under active. I think his idea was to see if my thyroid which has grown back was active enough for me not to need thyroxine. That seems not to be the case so after 8 weeks he resumed thyroxine to 25 mcg then after another 8 weeks to 50mcg. The results I posted were on the 50mcg and as far as I can see show me to be under active . I have now been on 75mcg for 4 weeks and shall have my bloods done in 4 weeks to see if 75 is enough.

I knew nothing at all about T4 T3 and TSH levels and still am stubbing in the dark. But this site is helping me understand although some of the jargon is confusing.

Can you tell me what the difference is between total T3 and free T3 as I find that confusing. I have asked Dr Toft to explain but he seems reluctant and tells me to be patient and of course I must be.

Can you tell me if NDT is the same as T3 as I have ordered some but I am apprehensive about self medicating.

I aprreciate you are not medically trained but can't thank you enough for your reply. Can I ask are all the messages I post privately seen by those who have replied to me. I ask because if that is the case then I don't need to repeat myself to each reply I send.

Thanks again for your reply I am beginning to see a light at the end of the tunnel.

Tanya

[humanbean in reply to Tanya-B]

Can you tell me what the difference is between total T3 and free T3 as I find that confusing.

Hormones like T3 are moved around the body via the bloodstream. However. hormones can't be moved just as they are, they are attached to various kinds of transport proteins. This is referred to as "binding" or the hormones being "bound".

en.wikipedia.org/wiki/Thyro...

When the hormones reach their destination they are detached from their transport proteins, leaving just the hormone on its own ready to be used by the cells that need it. The hormone on its own, no longer attached to a transport protein, is referred to as being "unbound" or "Free".

The body can't make use of T3 while it is attached to transport proteins, it has to be detached or "unbound" before use.

Total T3 measures the sum of all the T3 there is, whether it is bound or free.

Free T3 measures just the unbound T3 which is in a state ready for the body to use.

-----------------------------------------

Can you tell me if NDT is the same as T3 as I have ordered some but I am apprehensive about self medicating.

NDT and T3 are different.

Levothyroxine, often known as T4, is an artificial storage hormone made in a laboratory. It has no major activity of its own. T4 is the raw material from which the body makes T3. To convert T4 into T3 the body has to remove an iodine atom from T4.

T3 is produced from T4 when needed. T3 is the active hormone. With too little T3 people feel hypothyroid, with too much T3 they feel hyperthyroid. It is Free T3 levels that to a large extent determine how well or ill we feel. T3 (taken as tablets) is artificial.

NDT - the active ingredient in NDT is made from pig thyroid. Thyroid hormones in pigs are identical to thyroid hormones produced in humans. Pig thyroids contain T4 and T3, just like a human thyroid does. The pig thyroids go through lots of processing to turn them into pills, but the active ingredients are still there at the end - both T4 and T3.

NDT was the first effective treatment ever developed for hypothyroidism, back in the 1890s. Since doctors are no longer taught about it (they only learn about levothyroxine), many of them have never heard of NDT, and they think it is "new-fangled" or "cutting-edge", or in some cases they assume it is "herbal" and only taken by weirdos and middle-aged women.

In someone with a healthy thyroid T4 is produced in the thyroid. Some T3 is also produced in the thyroid, but most of the body's T3 is created from T4 by conversion. This conversion takes place throughout the body in different organs - the brain, the heart, the liver, muscles etc.

In someone who has had their thyroid removed or has a poorly functioning thyroid gland they lose the T3 produced by the thyroid and must rely on converting T4 to T3 in body tissues. Many people in this situation can't convert enough T4 to T3 to compensate for the missing T3 from the thyroid, and so they suffer from chronically low T3.

Unfortunately doctors in the UK have been told that T3 isn't important, so they rarely measure it, and they no longer give out new prescriptions for it (with some very rare exceptions).

Endocrinologists, those doctors you would expect to be educated about the thyroid, are usually diabetes specialists, and it would appear that many of them don't understand the thyroid any better than GPs.

[humanbean in reply to Tanya-B]

Yes I had been hyper for years due to being over medicated.

I think it is important to be precise about terminology. There is a difference between the following two conditions :

1) Being hyperthyroid.

2) Being hypothyroid and over-medicated.

The above two situations require very different treatment even if in many ways they have the same symptoms.

My personal opinion - unless blood tests in future ever show otherwise, you should not think of yourself as being hyper any more but as hypothyroid.

A post I read on here ages ago described an absolute horror story that made my jaw drop and it was because a doctor didn't understand the difference between the two situations I gave above. The patient was hypothyroid. They went to their doctor for a prescription review. The doctor ran tests, found the patient's TSH was slightly under the range, and then went straight into headless chicken mode. They informed the patient they were hyperthyroid, took away the patient's Levo prescription, and prescribed carbimazole. So they gave a hypothyroid patient thyroid-suppressing drugs. Can you believe it?

Luckily the patient came here and queried it. I don't think they took any of the carbimazole. I don't know what happened after that, but the doctor definitely needed some Continuing Professional Development, or whatever it's called.

This is why I think it is important for everyone to be precise about terminology. Mixing up "hyperthyroid" and "hypothyroid but over-medicated" can make patients and doctors very confused.

So, yes, being over-medicated can cause symptoms which can be mistaken for "being hyper", but it is best to think of it as being over-medicated.

Sorry, I think the above post sounds like I'm pontificating and preaching. But I can't think how else to say what I'm saying.

[humanbean in reply to Tanya-B]

Can I ask are all the messages I post privately seen by those who have replied to me. I ask because if that is the case then I don't need to repeat myself to each reply I send.

If you click on my name in blue on any of my posts you will see my profile. It also lists all the Posts and Replies I've made publicly.

When I wanted to know about your history I just clicked on your name and could see what you had posted publicly in the past. I'm not consistent in whether I look up people's history. Sometimes I do and sometimes I don't. Other members are just the same - they might or might not read your historical posts. So in your first post in a thread a brief re-telling of your history is a good idea. You don't have to re-tell it for everyone who replies. Another helpful thing is if you add your history to your profile and then you can mention that your history is in your profile. If you do that though, I would suggest writing your history in a text document first, save it, and then copy and paste it into your profile. Saving changes to one's profile only works about 30% of the time in my experience. It's badly bugged.

This forum also has a private messaging system. To get to it you would click on your name in the very top line of the screen, then click on Messages. If you sent a private message to Member X, the only people who could read it would be you and Member X. But anything posted on the open forum (like this post) can be read by any members because it isn't private.

When threads are first created the author can decide whether it can be seen by everyone or by community members only. All replies have the same permissions to read as the original post.

The default is "everybody". This means that the post will show up on Google, and can be searched for and read by non-members anywhere and everywhere.

When setting the post to be viewable by community members only I think the first couple of lines might appear on Google for the entire world to see, but not the whole post.

Personally, when I create a post I like keeping them viewable by communty members only.

[Tanya-B in reply to humanbean]

Thank you for all of that information that's fantastic. It will take me time to process it all but it's just what I needed . Huge thanks

[Tanya-B]

Thanks for that. I will ask my GP to test for B12 folate and D3 if he won't I shall use the site humanbean suggested and get it done privately.

[humanbean]

Your current results show that you are under-medicated.

Your TSH is too high. An increase in Levo should reduce your TSH. Having recently increased your Levo you should arrange to have blood tests 6 - 8 weeks after you began taking the new higher dose.

Your Free T4 is too low. Your recent increase in Levo should increase your Free T4.

As a general rule - there are always exceptions :

TSH - Most people feel at their best when TSH is low in range or slightly under the range.

Free T4 - Most people feel at their best when Free T4 is in the upper half of the range. Some people feel at their best when Free T4 is in the upper third or the upper quarter of the range. You have to find out for yourself where your sweet spot is.