Following on from my last post about not being able to keep my thyroid stable since having Hashis I’ve now got my latest test results. I’m going to be retested in 6 weeks and that will also include magnesium, ferritin.
Results are T3 - 4.7 (3.9-6.8) T4 11.6 (11-26) TSH less than 0.01. (0.27-4.2). Both t3 and t4 have dropped since November when they were t3 5.5 and t4 15.2. I have no idea why this has happened and needless to say due to TSH they’re talking about dropping my Levo which is currently 75mcg per day. Endo said taking T3 can sometimes push down T4. I felt like my T4 was probably low and wanted more medication, not less!! Any suggestions to help would be appreciated x
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Runner25
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I take Vit D, selenium and B. It’s about a year since I was tested so I’m going to be retested in a few weeks. I also started through the skin HRT in Feb and have read that this can affect levels. He wants to lower my Levo in a few weeks after I’ve been retested, but that will send it through the floor! On these forums the consensus seems to be TSH isn’t important, but that goes against what the medical profession say? I asked my Specialist what could happen with suppressed TSH and he said heart and bone problems. I’m thinking maybe reduce t3 slightly and up t4? What are your thoughts? X
Hi runner25I have just come back from an appointment with nhs endocrinologist who told me (amongst other things) that I was hyper and likely to get osteoporosis and arterial fibrillation and he wants to try and bring my tsh up. I have no idea how he thinks he'll achieve that and I'm terrified I'll be ill. He's reduced my t4 from 125 to 75 and increased t3 from 10 to 15! I went private before this and was looking for a prescription to maintain current levels. The private endocrinologist said that the whole tsh being suppressed causing heart and bone issues was overused and outdated . Current endocrinologist couldn't give a crap whether I'm on my knees or not. Just tsh in his range. I hope you get sorted out.
Honestly, I feel your pain! Being told constantly that you’re within range so should be feeling ok,or that even though you feel crap your TSH is too low is just not helpful at all!! I think I’m going to have to play around a bit with my dosing, I’m wondering if less T3 but more Levo might work? If I were you, I’d only be willing to do very measured, smaller adjustments to see how things go, but nowhere near the drastic drop that they’re suggesting. It really is the pits isn’t it. I’ve just taken a week off sick for the first time since my thyroid issues began as I could feel myself sliding into very hypo symptoms and I only did that because we’re going on holiday on Monday and I’m determined not to be feeling crap. I’m trying to rest up and am mainly watching Wimbledon, but I’ve never sat on the sofa as much as I do now with thyroid issues! Urgh, so dull!! I do have good weeks too and really try to make the most of them, but getting the balance right is hard isn’t it. I hope you manage to convince them to do things slowly and that it all works out for you. X
HiI know that feeling only too well! I've never been so heavy and inactive as now and I'm finding it hard to come to terms with. I was actually very close to feeling normal. I was even trying to get back to running but it feels like I'm not moving forward and I just cannot speed up! Dr couldn't care less. Said effects of under treated negligible. I felt things only needed tweaking but he's gone in with a sledgehammer. Thankfully he hasn't changed my levo prescription so I can increase if it doesn't work. I think it's a good idea to take time off. You need a break and perfect timing to watch Wimbledon 🎾
Hopefully you’ll find that an increase in t3 will really help you to be active like you want to. I guess the only thing is it will, as I have just discovered, possibly push down your t4 and tsh! I expect you already do this, but I keep a diary to try to track my symptoms, blood results. Literally a few words to say how I’m feeling. It’s quite funny though as I generally only write daily when I’m feeling crap and then there’ll be a gap of a few weeks when I must have felt generally ok. I don’t want to know anything about thyroid when I’m feeling ok so I don’t log anything and then I start up again when I’m sliding down the pan again! Don’t give up. Keep asking questions and changing Endos if you are not having much luck, you deserve a good life! Xx
Thank you. We all deserve a good life. Good tip though. I don't have the option of changing nhs endocrinologist but I might ditch him and go back to private!
Two reasons why you can't keep your levels stable:
1) you have Hashi's - do you know how that works?
2) by the sound of it, you have a doctor that doses by the TSH. That puts you on the TSH seesaw: TSH high, increase dose; TSH goes down below range, reduce dose; TSH goes above range, increase dose; TSH goes below range... etc. etc. etc. and so on forever. But, they never learn!
Taking T3 does reduce FT4 levels and suppresses TSH. That's what it does, and endos should know that.
I know in basic terms what Hashis is, but 3 years in and I’m still very up and down. I’ve gone GF, take Vitb, vit d, and selenium and have had T3 since last Sept. I’m wondering if I should decrease t3 and increase t4? I also started HRT in Feb and although it’s through the skin has this affected my t4? I’ve read that it can, but the professionals just say ‘shouldn’t do’.
Oh, I really wouldn't reduce your T3! It's pretty low. But you could try increasing your T4 to see if it helps.
You will continue to be up and down until your thyroid is completely destroyed. And, that can take some time. I don't know exactly when my Hashi's started - how can one ever know that? But, I'm assuming it was after my first pregnancy - because that's when it often happens for women. I was 23, then. Now, I'm 77 and I don't think my thyroid is quite dead yet. Although I haven't put it to the test, recently. But ten or so years ago, it was still clinging on. Although I haven't had a 'hyper' swing since I was 50.
What do 'professionals' know about thyroid? Nothing! But, just saying 'affecting' your T4 is pretty vague. As it's transdermal, it won't affect the absorption of your levo. But, it depends what's in it. Is it just oestrogen? Or just progesterone? Or the two together?
I think I’m scared of the whole suppressed TSH causes strokes, bad bones, heart issues. The medical ‘experts’ all seem In agreement with that. What are your thoughts on long term suppression of TSH? I am on Estrodial with is transdermal and a progesterone tablet. I take the tablet away from thyroid meds.
I think it's a load of rot. My TSH has been suppressed since at least 2012 - can't remember before that. And, I haven't had a stroke, or a heart attack, and as far as I know, my bones are fine.
Thing is, you see, these so called 'medical experts' are not experts at all. They have very little training in thyroid, and what they have had is very muddled and confused. And they don't know the difference between a TSH suppressed due to an over-active thyroid - Grave's - with very high FT4/3, and a TSH due to thyroid hormone replacement with FT4/3 still in-range. Or very slightly over. They know nothing about T3, that's the problem, what it is or what it does, and do not realise that it's the very high FT3 that causes heart and bone problems, not the TSH itself.
One thing the medical profession is expert at, and that's putting the cart before the horse! They do it all the time, with no idea that they are doing it. This business of TSH is just one example.
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