Hi All. I haven't been here for a couple of years as I have been very well on 125 mcg daily of the Mercury Pharma brand of Levo.
However, my GP has finally caught up with the fact that my TSH is gradually reducing. It was 0.8 three years ago, then 0.05 last year now it is 0.02 at my annual test. He wanted me to drop to 100 mcg a day which I completely refused to do, but settled on 125/100 alternating days. Guess what, one week on and I feel tired, miserable and cold. I'd almost forgot what that felt like.
I have today ordered a private test from Medichecks to for TSH, FT4 and FT3. I've always needed FT4 near the top of the range to feel well, and my FT3 has always been in the lower part of the range.
I remember reading on here before about a paper/article showing that once on treatment the TSH sort of disconnects the results. Probably not explaining this very well but that the TSH is suppressed but that this is not harmful if the 4s and 3s are in range. I want to get the results and present him with something to get my dose back up. In the meantime I've increased back up to 125 mcg as I have spare and I'm really not going to play this stupid game of becoming ill. My surgery will only test TSH.
If you can point me in the right direction it would be most appreciated.
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foreversummer
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The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
Thank you Diogenes this is exactly what I need. Thank goodness you are continuing to research. I am going to print this off for my GP - you never know he might actually read it and use it to help his patients.
It is also reassuring for me to know that I am not running some huge risk by having a suppressed TSH. I know that really, but it is intimidating when a 'so called' knowledgeable GP tells you so.
I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m on T4 also, you might find the comments about hashimotos and over-medication useful in your battle to be well.
I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.
Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo despite the fact that my TSH will go lower and it is already below the reference range.(0.03 - ref range 0.5-5)
What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low. Also, if you have been hypothyroid for a long time before being diagnosed and treated that also makes your TSH react in less stable ways and makes it an unreliable measure.
My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important. Ultimately your feeling of ‘wellness’ depends on T3, T4 alone does nothing if it isn’t converted.
The combination of hashimotos and synthetic T4 creates a perfect storm. Your pituitary goes AWOL, TSH plunges and you may struggle to do anything with synthetic T4. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc. which are easily tested. Over medication is a physical state with symptoms , not a blood test.
There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56! For your doctor - testing your bloody T3 and taking note of a T4 result that is not close to the top of any reference range I’m aware of would be a bloody good start!
He should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper rather than a patient.
Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, you would know as you did previously. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! 🤸🏿♀️ 🥛
I hadn't read your post before so that you for replying. I really should have to stuck to my guns I guess. You just can't take your eye off the ball with this. It is very interesting what your doctor says and it makes perfect sense to me. I felt fine on 125 mcg so that is obviously what my body needs. Back on that dose again now so hopefully I will return to normal soon. Just had a full 12 hour sleep overnight - still feel knackered this morning!
My test kit has arrived this morning. Will get my son to take my blood on Tuesday morning early. Will post up my results if that is OK. I can't believe the difference I feel in just a week at the reduced dose. I'm hoping it won't take long to get back to normal. Will take the results to my GP together with Diogenes paper and ask for my prescription to be reinstated.
Only a week. That's why I'm so amazed the difference it has made. I've put myself back to 125mcg. Have taken 125mcg today when I should have taken 100 mcg.
I would say, MissGrace, that it’s a bit of an overstatement for the endocrinologist to say that most doctors understand hypothyroidism; the painful truth is, as witnessed by the posts on this site, that they understand b****r all about the thyroid.
Agree Penny. Mine just looks at a number. I've never actually met this GP as they are always changing in my surgery. He doesn't know me or has even met me. He darn well will do soon that's for sure!
Hi foreversummer I was in a similar situation to yours - suppressed TSH / annual argument about dose reduction - which I refused to do. To avoid the annual argument I decided it was best for me not to have the annual blood test at all. So they have to go by my signs and symptoms instead.
I set out my reasons in a letter, including why I would not reduce my dose.
If you like, I can email it to you (if you pm me), you can and adapt it and cherry pick what you need. Diogenes post below would slip very nicely into it.
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