What with my ongoing stomach issues, the doctor requested full bloods so that we could go back to the start and find out why I continue to have blood, pain, bloating, basically chronic IBS. They did not know I self medicate with Tiromel.
Based on my last private blood test on 7th May, I was slightly overmedicated and dropped T3 to 75mcg then to 50mcg.
Results then were:
TSH 0.01 (0.27-4.20)
T4. +1.5 (12.0 - 22.0)
T3 +7.6 (3.1-6.8)
I felt good, had occasional peroids of grinding my teeth which disappeared with the reduction. I took both 25mcg at once, and had changed to bedtime dose so I could supplement during the day. I felt ok til today!
So I take my dose the night before, get bloods done thinking they wouldn't test for thyroid, and they did all 3.
New results from 10 days ago:
TSH <0.03 (0.34-5.6)
T4 <3.20 (7.5-21.1)
T3 9.90 (3.8-6.8)
B12 248 (150-900)
Iron 19 (10-21)
Doc says all is perfect, no antibodies, liver and kidney function fine. But thyroid results weird. So before I arrived she'd gone through all my previous results were normal. I said I beg to differ and told her my thyroid story from when I had RAI.
We talked, she listened, said I was showing signs of overmedication: agitated (kept me waiting 35 minutes and I only only get an hour for lunch, having to explain why I self medicate etc) talking too fast, took my blood pressure, it was 146/91 and she was worried. She asked if she could trial me on T4 and retest in 3 weeks, as she would like to make sure I don't get sick. She still insists my previous levels are normal but seeing as she has another patient who presents like I do, normal results but symptomatic, she wants to trial.
After picking myself up off the floor I'm now concerned.
I'm to stop all T3, and start 25mcg daily of T4 from Saturday. Retest blood in 3 weeks and adjust T4 if required.
I feel good! I don't want to go backwards! I didn't tolerate the T4/T3 combo at all, will I go through a rough period while my TSH rises? Or sneak some T3? < husband does not agree with this bit.
Am I right to be worried?
Thanks in advance K.x
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KT304
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So she wants you off t3 and on a low dose of t4 ..... You may be on the floor but if your t4 is in range and your tsh registering, she will declare you fixed.
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Nothing odd about your results if you aren't taking t4 but are taking t3. If you have no thyroid due to rai then putting you on a low dose of t4 only will make you very hypothyroid. I wouldn't be a part of this doctors learning curve and experimentation.
Your b12 is much too low, hope you are supplementing, if not,then do so.
Suppose you know about low stomach acid and what can happen ? If not, have a read of this link.... scdlifestyle.com/2012/06/hy...
KT304, T3 will be out of your blood 6 hours after taking a dose so your FT3 being over range means you are overmedicated on 50mcg.
If you stop T3 and try what your GP has prescribed you may not feel rough as it will take 3 or 4 weeks for your FT3 to drop into range. If you do, add a little T3 6.25mg (quarter) or 12.5mcg (half). It might be worth discussing what thyroid levels she wants to see. If it's not TSH around 1.0 you might want to continue self medicating.
If you decide to continue self medicating T3, you should reduce to 25mcg for a couple of weeks to allow FT3 to drop and increase to 31.25-37.5mcg if you feel you need more.
Supplement 5,000mcg methylcobalamin sublingual lozenges, spray or patches for a couple of months then 1,000mcg daily and take a B Complex vitamins to keep the B vits balanced.
You also need to supplement iron. Take each iron tablet with 500mg-1,000mg vitamin C to aid absorption and minimise constipation.
I hear what galathea and grey goose are saying, I really don't want to be an experiment, I feel good, can tell when I'm overdoing it, take care to record temps and pulse, I've tried to eat more food more regularly, hard when working but try all the same, no pressure to exercise, just work with the meds and get to a good place after years of feeling like crapola.
But. And here's the but. 2 things: my husband wants me to trial, he supports myself medicating, he would prefer me to have the meds prescribed by a GP, and be monitored.
And the other is that if I do trial, I can say "I've tried it, I don't convert, if you as my GP really want to support me I'll happily take T3 from the NHS, otherwise I'm buying it myself"
I know myself that I don't tolerate T4, it's frustrating that I have to try it again, the terrible side effects are why I changed to T3 in the first place.
(Reading my post now I'm going round in circles, need to think...)
Will increase B12 to 5000mcg, back on Iron today, high strength B vit, vit D and 1000mcg of Vit C.
Clutter and all, great posts, I've got lots to think about.
KT304, I'm not trying to persuade you either way. Just a thought, you were previously unwell on T4, I was too, but once I cleared the build up of T4, as you will have done by being on T3 only for a few months, I was able to tolerate T4+T3 which I've been doing well on for over a year now.
Why did you have RAI? Did you have Graves? If so, you might need your T3 over-range. You might be one of those people that needs it over-range, anyway. Like me. I've been in your position - although my thyroid was killed by Hashi's (almost) - and the endo said I could stay on T3 only, but I had to have a TSH of less than 0.25. In which case I would be very obese and depressed and bald. I know my body and how I react. I refused and never saw her again. You need what you need, and you're the one living in your body, not her. In your case, I would stay at the dose on which I felt well, and tell her to go practice on someone else.
Hi grey goose, not sure if it was Graves, recall thyrotoxicosis as the diagnosis with multi nodular goitre, awful time, but just could not get thyroid under control, so RAI. Maternal grandmother had her thyroid out when she was 21, 1955, and was never given T4. Died of multiple (apparently) unrelated chronic kidney failure, but plagued by I'll health. Paternal grandmother had thyroid problems which then turned into thyroid cancer. Mega RAI dose cured, but sadly passed away a few years later with a colon that had died.
I am still at least 4 stone overweight, lost half a stone when first on T3, now maintaining not gaining. I love that hair has started to grow back, as have my eyebrows and eyelashes!
Thank you for your posts all, lots to think about xxx
I think a full vit/min screen would be very useful, if you can. I'm afraid I con't comment on nutritionists, I've never seen one. But the dieticians I've seen have been useless!
A year ago I allowed a new GP to persuade me to try going back to T4 only from NDT. I knew it was stupid, I had never had any success with Levo, but for some mad reason I agreed. I gained 8 kilos in 8 weeks, felt absolutely terrible and then they noticed that my T3 was non-exist! A year later I am beginning to recover still struggle to lose weight, still exhausted. But at least my adrenals are functioning half way normally again, and I generally sleep reasonably well.
I am not saying don't listen to the doctor, but you should be aware that it may not be a question of 'if its a disaster I can go back to where I was and all will be fine and dandy again'. At the very least you should be monitoring and reviewing very carefully.
T3 has a half life of around 8 hours, so after 2 days there is very little left in your bloodstream, although I have heard it say that its effects on the cells can last up to six weeks. So if you drop to a small dose of T4 only the amount of T3 in your system will be quite low, quite quickly. I think if I were in your position I would switch over much more gradually.
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I'm now concerned. 
TSH suppressed - Doctor wanted to lower my dose of T4
Good news story re NDT 
Good and bad news re GP consultation
New results - good/bad news
