Hoping I can find a little help. As someone who is dyslexic words and sentences get me at the best of times but throw in some medical speak and I am completely lost. Plus the neuropsychologist told my my symptoms are exacerbating my dyslexia.... happy days!
I was diagnosed recently with Hypothyroidism amongst other things and I received some amazing advice from you all recently and had a lot of recommendations on what I need to be tested for as I have only had my TSH levels done. From the posts you all helpfully said I should have TSH, T4 and T3 tested as a minimum so here is where I need your help. I have been researching what these are and the differences and why I need them tested in the first place, but with my learning disability it just aint going in and I feel I am reading gobbldy gook!
Please can someone explain to me in the most basic terms why I need TSH, T3 and T4 testing rather than just the TSH so when I see my Endo next week I can demand the tests but have a bit of knowledge behind me rather than just saying I want them
Thank you in advance
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TSH is the message the pituitary gland sends out to the thyroid to tell it how hard to workT4 is the thyroid hormone the thyroid sends out.
T3 is the thyroid hormone the body uses. To get T3 from T4 the body has to process the T4. This process is called conversion.
In blood tests you need FT4 and FT3. The F stands for Free. This means this is the amount of hormones available to be used.
Beside the result there should be numbers in brackets. This is the range. The range is the lowest number and the highest number your result could be. Your result should be somewhere in-between.
When you start on levothyroxine (which is T4 hormone) you are looking to get TSH (the message signal)to around 1.
Once that happens you then start to look at FT4 and Ft3 results. The hormones available to the body.
This is so you can see if you have enough thyroid hormones for you. So you will look to see where your FT4 result is in the range and also how you feel.
That might be all you need to do to feel well.
If your FT4 result is near the top of the range or over it it might mean that your body is not good at turning T4 into T3. In other words you have a conversion problem.
This is when you start to look at your FT3 result. To see where FT3 comes in its range.
Ahhhh right so the levothyroxine I am taking is a replacement T4 hormone? (Hope I have interpreted that right)
This is so helpful, thank you so much! I will get someone to read it out for me later too just to make sure I am getting the full picture but this is all starting to make sense.
So in my head I am now thinking this..... I have empty sella syndrome so I don't produce TSH. I am on Levothyroxine which by the sounds of it is my T4 hormone replacement. I need to get the right levels of the Levothyroxine to control T4 so it doesn't convert into T3 which is a whole other ball game but I need to make it into a balancing game and find the right balance.
With your syndrome the TSH message sent out will be affected so you need to make sure that the level of ft4 in your blood is good. If it is low then you would need an increase in levothyroxine which is t4.You need the ft4 in your blood to convert into ft3 effectively. T3 is the hormone every cell in our body needs.
If you are not converting well your blood results will show ft4 high or over the top range number and your ft3 result under half way through its range.
If this is the case then you need to check vitamin levels and maybe see if you can add in t3 hormones in tablet form.
I am sorry you also have dyslexia too. It is a handicap as I know someone who has the condition.
Can you get a friend to read the following to you?
T4 is also called levothyroxine and is the 'inactive hormone'.
T3 (also called liothyronine) is the active hormone needed in all of our T3 receptor cells. Our brain and heart have the most T3 receptor cells.
The following is an excerpt from the link below:-
The thyroid gland makes T4 in response to thyroid-stimulating hormone (TSH). TSH is made by the pituitary gland in your brain.
T4 is found in the body in 2 forms: free T4 and bound T4. Free T4 travels into body tissues that use T4. Bound T4 attaches to proteins that prevent it from entering these tissues. More than 99% of T4 is bound. Because T4 is converted into another thyroid hormone called T3 (triiodothyronine), free T4 is the more important hormone to measure. Any changes show up in T4 first.
Another explanation:-
T3 and T4 help to control how your body stores and uses energy (metabolism). The thyroid hormones also help control many of your body's other processes. These include:
Oh my days reading this makes a little more sense to me! Yay! Thank you! I will still get someone to read it for me later so I can get the full picture.
I also have empty sella syndrome so I don't produce TSH. That now makes sense.
So in terms of the T3 and T4 I just need that testing to see if this is causing some of my other symptoms and causing problems else where? With me putting 3 stone on in the last 2 months and I am either sweating profusely of shivering cold, I am guessing it is probs down to this. That now makes sense too.
Yes, unexplained weight gain is a common question for those who're hypo but can be due to being hypothyroid and not on a sufficient dose to raise our metabolism.
Thyroid hormones enables everything in our body to work, from head to toe and we have millions of T3 receptor cells.
Request Free T4 and Free T3 tests and these are different to the normal T4 and T3.
Plus the neuropsychologist told my my symptoms are exacerbating my dyslexia.... happy days!
That's not quite right. It's not your symptoms that are exacerbating your dyslexia, it is your thyroid disease. In fact, dyslexia is a hypo symptom.
So in my head I am now thinking this..... I have empty sella syndrome so I don't produce TSH.
Do your doctors know this? If so, why are they testing your TSH? That won't tell them anything. They need to test your FT4 and FT3, the actual thyroid hormones.
I need to get the right levels of the Levothyroxine to control T4 so it doesn't convert into T3
Sorry, but that's not right, either. The T4 needs to convert to T3. That should read: I need to get the right levels of levo to control T4 so that it converts to T3.
The problem is that not everybody converts very well. That is why you need both tested to see how well you convert. If your T4 doesn't convert to T3, you will stay hypo, no matter how much levo you take.
It is so hard isn't it. If there is one word in a sentence or a paragraph that I don't understand it completely throws me off and I struggle to understand what it is then telling me or I completely get the wrong end of the stick.
By the sounds of it, my penny has still not dropped but I am understanding a few bits now which is positive. I am so pleased you have been able to get your head around it though
Just remember no thyroid hormone replacement works effectively until your core strength vitamins and minerals, ferritin, folate, B12 and vitamin D are maintained at optimal levels.
Doctors do not know much about vitamins and minerals, just get the test run if you can, though the surgery and then post the results and ranges up on here in a new post and you will talked through what, if anything, needs supplementing.
When you have a thyroid blood test, you need to not take your T4 - Levothyroxine on the day of the test until after the blood draw.
You should get an early morning appointment, fast overnight just taking in water and take your T4 after you have had the blood test.
You need Free T3 and Free T4 tested as it is Free T3 that gives you the symptoms :
Too high a Free T3 level and you may experience hyper type symptoms :
Too low a level of Free T3 and you will experience symptoms of hypothyroidism.
When on T4 only the relationship between the T3 and the T4 is meant to be at about 1 / 4 - meaning your T3 reading needs to be about a quarter of your T4 reading.
We generally feel at our best when our T4 is towards the top of its range as that should give us a higher in the range T3 - which makes us feel better than having a lower T3 in the range.
There is a list of symptoms of both hyperthyroidism and hypothyroidism on the Thyroid UK website who are the charity who support this forum.
Thyroid UK website is an excellent adjunct to this forum, and you will also find a page of private companies that can run the appropriate blood tests if your doctor in primary care isn't able to.
If your appointment next week is with an NHS endo and through your surgery it makes sense to ask your surgery to run the thyroid blood test this week, in advance of the appointment.
In this way, it saves everybody's time and we could advise on the results prior to appointment if anything looks amiss so you have an understanding and are prepared at the appointment.
Always get printed copies of all blood tests results and ranges and throw them up on here, in new posts, until you know how to read them for yourself.
Sadly some symptoms appear on both health issues but your common sense will prevail as you know whether your metabolism is running too fast or too slow for you.
Thanks for posting about your dyslexia and the problems you have with the medical terminology.
I'm the same and I wasn't identified as having dyslexia until I was in my late 20's early 30's and I can relate to what you say; it is difficult getting your head around the terminology!
Also I struggle with retaining information, so I may read something on the forum, try to understand it, think that I've digested and understood it but then am not able to remember it so end up back at the beginning again! It can also be very time consuming and takes a lot of energy.
I've found that diagrams/drawings can help but I know that doesn't work for all.
Something I'm trying to get my head around at the moment is ....'negative feedback loop' ....I'm really struggling with this one ☺
I can relate to everything you have just said. It can be really challenging can't it. I learned recently that I can't process the information given to me straight away. You could tell me something and I struggle to say what has just been said. But apparently give me a day or so and I can tell you all about it. So strange! Different kettle of fish though reading it, I can never remember it, like you say, it is so time consuming!
Plus why can't things just be said in the simplist (No idea how to spell that and spell check isn't giving a suggestion ) of terms , why does it come wrapped in fancy terminology, acronyms and long paragraphs?
I have just quickly googled the 'negative feedback loop'
😳Wow! Good luck. Maybe ask on here and see if someone can help?
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