Hello everyone, any advice on my current situation would be massively appreciated, I don't know what to do...
My GP referred me to an endo, largely because I haven't had any periods since coming off the pill nearly 3 years ago, but also due to never quite feeling like my hypo symptoms have resolved since starting on levo about the same time.
I had a pituitary MRI, and had all my bloods repeated, and I have had a call from the endo today. The only blood results he gave me are:
TSH - 0.05
FT3 - 3.4 (3.1-6.8)
He said that I don't have a pituitary problem, but mild primary hypothyroidism. He said I am over-medicated, so he wants me to reduce to 50mcg. He is concerned about atrial fibrilation and osteporosis from my suppressed TSH - he said I might have another 60 years to live and he wants to keep me well. I said that I had tried reducing my dose to both 50mcg and 50/75 (the latter earlier this year) and it made me feel worse. I said that I was actually hoping for a dose increase because of my low FT3, and he said there is no way he's going to do that. However he has agreed that I stay on 75 and he will see me again in a few weeks, when we will discuss me having some T3.
I am struggling with insomnia and some associated anxiety at the moment (has come and gone over the last year), and a general lack of energy over the last few months. Also now the weather has gone a bit cooler, I have dry skin again. I vary between consipated and going multiple times a day. These things seem to come up as both hypo and hyper symptoms.
I don't know what to do, should I try reducing the dose and see how I feel, or should I hold out and bargain that I'll reduce if he gives me T3? Obviously I don't want AF or osteoporosis (and this link concerns me osteonaturals.com/2012/09/l... ), and I would really like to sleep!
Re my lack of periods, he said that he thinks I do too much exercise, and that I should go back on the pill pending fertility treatment in the future. I'm not very happy about that, but he says it's not good to not have periods.
Sorry for the long post, but I feel a bit overwhelmed by it all.
Thank you so much in advance,
Emma
[ Edited by admin to fix link. You must leave a space after the URL - you had put a close parenthesis. Perfectly sensible in ordinary writing, but messes up URLs. ]
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mountaingoat83
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I think you need a change of Endo. Sometimes it's better to do a 'Do It Yourself' if we want to get better although it would be marvelous if we weren't forced.
Your FT3 is at the bottom of the range, should be towards the upper level that's why your feeling unwell. My TSH is usually 0.01 and the Endo never blinked and eye, neither did my GP.
You have clinical symptoms of hypo which will only be relieved when you are on an optimum dose of thyroid hormones.
If we are underdosed we are more likely to get heart problems as if we take too much thyroid hormones we would soon reduce them ourselves. I think sometimes they want to frighten us into submission. Female problems are rife if we are hypothyroid too.
Your Endo doesn't deserve the title. He hasn't a clue. Your FT3 is at the bottom of the range - not sure how it could expect that to magically go higher on reduced Levo!
Find a new endo, one who actually knows how the thyroid works...
Was it about people with hyperthyroidism/Graves getting osteoporosis and AF? If so, I believe that is a risk for them if they're not treated. But it has nothing to do with a suppressed TSH. It has to do with long-term, over-range FT3. Which you in no way have. You are right, you need an increase. Your endo is talking out of somewhere other than his mouth.
Did he not do an FT4? That would have shown us whether you have trouble converting or whether it is just a case of being Under-treated.
Do you exercise too much? If so, he could be right about that - in an indirect, convoluted way (but I doubt he knows why!). Exercising uses up your T3, so if you haven't got enough to begin with, it's going to leave you in a sorry state. Hypothyroidism is, in fact, low T3. Hypothyroidism causes menstral problems - of various sorts. So, if you are over-indulging in the gym, or whatever, it might be a good idea to give it a miss for a while, until your FT3 is optimised, and just do a bit of gentle walking to stop you seizing up.
Glad you managed to stay on the 75, and I'll keep my fingers crossed that you get the T3 next time round.
Thank you Greygoose, that is so helpful. FT4 last time was 16 (12-22).
I walk about 4 miles a day and gym or run 3 times a week - I don't feel it's excessive but maybe my body can't handle it at the moment. It's good for my mental wellbeing though, I'd struggle without it.
If I were close by, I'd willing come to your next apt. Unfortunately, I live in France. So, not much help there!
Yes, I do understand you need your exercising for your metal well-being, but it's not very good for your physical well-being at the moment. However, if you do decide to self-treat, and buy your own T3, you'll be able to get your levels up and compensate for that. Although, your metal well-being will probably also improve if you get your levels up.
Sounds like I'm trying to sell you something, doesn't it! lol But I'm not. It's just that so many of us have Fallen foul of endos like yours and had to resort to self-treating. I did, years ago. But two years ago, I tried to give conventional médicine a second chance, and saw an endo... When she told me she wouldn't allow my TSH to fall below 0.25, and she laughed at the mention of DHEA, I knew it just wasn't going to work. I went back to my self-treating and suppressed TSH!
Mountaingoat, If your endo kept up with research he would know TSH levels are not associated with AF and that one extra hip fracture per 1,000 patient-years was found in a meta-analysis of patients with TSH <0.1. Probably won't stop him spouting the patronising, paternalistic BS about keeping you well for 60 years though
If you reduce dose your FT3 will bottom out. Low FT3 means you are functionally hypothyroid. Exercise depletes T3 which is why it can take hypo patients 2-3 days to recover from excercise. Rather than tell you to reduce exercise and go back on the pill your endo should prescribe T3. If your periods don't return when FT3 is good the problem is unlikely to be endocrinological.
Thank you Clutter, this is really helpful although I can't access the second article?
The first one says that higher FT4 increases risk of AF, not sure I would show that to the endo? Or would T3 not change FT4, only TSH? Apologies for my ignorance!
MG, to summarise the AF story, those who are long term hyper thyroid, usually due to Graves, are at risk of AF, osteoporosis, etc. This has led to ideas that thyroid replacement can also cause these problems, but a really more of a rumour, and the studies Clutter is linking show that it doesn't actually happen.
The only thing that might be dangerous is if your T3 was over range.
Just wanted to chime in to agree with others, you are very undermedicated, and your endo I knows nothing about thyroid results. This is not at all unusual, mine also knows nothing.
Mountaingoat, I think that's FT4 in unmedicated patients because later in the article it suggests researching to see whether similar results are found in patients on replacement.
The 2nd article appears to be behind a paywall now. Your endo should be able to access it via the hospital account if you give him the link.
Mountaingoat, It's possible it will be looked at. I think patients are entitle to present research debunking comments perpetuating low TSH causing AF and osteoporosis if it gets them a dose increase or prevents a dose reduction.
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All we can do is refuse dose reductions and go our own way. 
Intro, and also: TSH suddenly high - feeling bad. Connected?
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