I'll give a bit of a background info 1st. I had a right lobe removed 1983 after having a big lump on my thyroid ( after seeing an endo on 2/9/15 he thinks the surgeon left the unaffected half part there on the right side and only operated the lump off ) Then I had the whole left thyroid removed 3 years ago due to having 7 nodules there. I think the parathyroida were left as I have never had any problems with my calcium results.
On the 17/6/15 blood results were as follows TSH 0.01 , T4 23.05
I got a phone call from my GP to come and see him. He dropped my Levo from 75mcg to 50mcg as I was now overactive. I saw endo very 1st time on 2/9/2015 and he ordered new blood tests this time cortisol and T3 was included.
My TSH is now 15.01, T4 11.2, T3 3.2 and cortisol 221 .
This all has changed to less than 3 months to those readings ! I am back on 75mcg levo daily
I am waiting the results to reach my GP as he doesn't know what T3 treatment I should get and the endo also suggests that I need cortisol.
Can anyone help as I don't know what the T3 hormone basically is and does it help. I initially went to see my GP because I have been feeling breathlessness. But now I also have the old familiar feeling of strangulation on my right side of throat which took me to doctors in the 1st place 3 years ago when 7 lumps were discovered. ( you know the pressure feeling in the front of the neck ) I am waiting an ultrasound scan appointment so they can see what's going on the right side but last thing I want is to have a 3rd thyroid operation. The breathlessness is driving me nuts , is there a connection there with my blood test results?
Many thanks for reading this and any comments welcomed
Marja xxx
Written by
ThyroidHell
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Sorry to read about your difficult journey. It seems to me that when your GP lowered your Levo saying you were Hyper - was possibly a mistake as there was not a FT3 result over range to suggest that. You haven't given a range for the FT4 - but it looks as if you were very near the top or over. I am not a medical person - but I have read that you will only feel Hyper when the T3 is over range. T4 is a storage hormone and only converts into the ACTIVE hormone T3 when needed. The sudden rise in the TSH does illustrate reducing your dose was not the right thing to do as most of us feel better with a TSH of 1 or under.
Your FT3 result looks low in the range ( even without the range ! ) and may be the cause of your Hypo symptoms ( breathlessness ) it could be that you are not converting the Levo into the much needed T3. So adding a small dose of T3 to your Levo may just be the thing that makes things better for you. Many people on the forum take both.
Also do you know your levels of Iron - Ferritin - B12 - Folate - VitD ? Low Ferritin can be one of the reasons you are not converting T4 into T3 - and low iron can cause breathlessness.
Hopefully the scan will put your mind at rest and that you soon will have answers.
I think there's only one T3 treatment you can have in the UK. The manufacturer has a Monopoly.
T3, also known as Liothyronine, or Cynomel, is THE active form of thyroid hormone. It controls everything. It is needed by every single cell in the body - and there are an awful lot of them! - so, when you Don't have enough, all sorts of things can go wrong - there are over 300 syptoms (and doctors know about two of them, if that!).
Some T3 is made in the throid gland. But most is converted from T4 in the body cells - especially the liver. Sometimes, people have difficulty converting T4 into T3 - although in your case, it would appear that you Don't have enough T4 to convert, anyway. Reasons for difficulty in conversion can be nutritional deficiencies - vit D, vit B12, folate, iron and/or ferritin - or low cortisol. Or, you may have a gene defect which stops you converting. In any of these cases, the best action may be to take T3 directly, and not rely on the conversion process. However, the above deficiencies also need to be address, or your body won't be able to absorb the hormone you give it.
At least one person posted here that they managed to get Sanofi Cynomel from France on an NHS prescription. Doctor supported when he realised it would be cheaper than the UK product.
Thyroidhell, The breathlessness will be due to your low FT3. The feeling of strangulation may be due to high TSH stimulating and inflaming remnant thyroid left after thyroidectomy.
Your GP over reacted when he reduced dose by 25mcg because FT4 was top of range or mildly elevated. You obviously needed it high to convert T3 and TSH was suppressed because sufficient circulating hormone was detected. It's ridiculous to assume a thyroidectomised patient can exist on 50mcg which is half of what is considered to be a replacement dose.
Reducing dose has caused FT4 to drop to what must be below, or near, the bottom of range, and is insufficient for conversion. FT3 is consequentially at the bottom, or below, range and this is why TSH has risen. TSH 15 means your pituitary gland is screaming for more hormone.
Liothyronine (T3) is an alternative thyroid replacement to Levothyroxine. It is 3 x stronger than Levothyroxine and will raise T3 levels in patients who don't convert well on Levothyroxine. Thyroidectomised patients lose the facility to convert a significant proportion of T4 to T3 via the thyroid and usually do very well with the addition of T3.
Adding T3 to T4 has immeasurably improved my health. T3 has a much shorter half life than T4 so split dosing 2 or 3 times a day is recommended. I take my first dose with Levothyroxine in the morning and the second at bedtime.
Thanks Clutter , I shall print this reply and take it to my GP , I am still waiting for the Endo to fax the details to my GP so I can get my medication !
My GP once said if I missed my dose I wouldn't get a proper reading. On another occasion my levels had dropped and she asked me if I had missed a dose, I hadn't. So is it a true reading if you miss a dose or keep the regular taking of the dose going? What you're saying is don't take it in case the results are higher and they lower your dose but if we overdose on it, it can cause other problems so I'm not persuaded either way it would depend what time my blood tests were on whether I'd taken my dose or not.
Cannylass, immediately after you take a dose, the levels in your blood will spike - that's the first place the whole tablet gets poured into.
Over the next few hours, it will get spread out through the body, tidied away to where its needed.
What you want from your blood test is to see this 'tidy' version - the true amount your body has got to be going on with. Not an artificial huge splurge.
The half life of T4 is nearly a week.. Missing one dose will make no difference to your operating stores of T4.
If a doctor said that, they were making up their own nonsense - that is common, most GPs know very little about thyroid testing. If you are over medicated you will soon know about it. It's not something to fear.
The last time I missed a dose, I really noticed within hours. I appreciate this seems to go against the science, and the experiences of others. Mind, I also believe I can notice the impact of changes within hours. And I have observed others in whom even a very small dose of levothyroxine has an effect within minutes.
Thanks Helvella, that's interesting. I have definitely felt dose increases within a day or so. But not sure I can even feel the difference if I miss a T3 dose.
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