Hi all. My TSH has gone up to 9, and my T4 is 13. Everytime the GP or Endo increase my Thyroxine dosage and bring it within the range I seem to go nuts. I get very angry and it's not fair on my husband or kids. I go through bad depression, paranoia and severe muscle pain. When I reduce the dosage then I'm extremely fatigued and can't function. What is going on here? Does anyone know? I had to go on anti depressants to control all the depression etc with the Thyroxine increase. This had led to a new set of problems i.e. weight gain
I'd appreciate any replies.
Written by
madhatter
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For a guess, I'd say that you can't convert to T3 so nothing is getting in to the cells, which is why the TSH is rising to tell the thyroid to make more hormones.
If you keep pumping in T4 which is not being converted to t3, it's sitting there giving you joint and muscle pain. And before long, a high reverse t3 as your body makes reverse t3 to get rid of T4.
Reverse t3, stops the t3 getting in to the cells, so the tsh rises..... so you make more t4, which generates more reverse t3..... you with me on this loop?
You need to have your free t3 measured and preferably your reverse t3 too. T3 is a start though. Doc may do it, or its £17 at Lab 21.
Depression is linked to low T3. The anger thing is probably your adrenals pumping out adrenalin to keep you going as the thyroid meds are so obviously not working for you.
You'r adrenals are probably in a mess by now too. A saliva test from Genova is £75 but there might be discounts for being a member of this forum? You need to have OK adrenals to take T3, in fact you need then=m to be ok to take t4 it tells you this on the patient information leaflet.
Hi Nel - this all makes sense, it's a good explanation. Where I have the issue is if you have these private tests done and then present the info to your gp or hosp doc then what? My experience is that they won't appreciate being given test results that they didn't prescribe and hearing suggestions of what's wrong. It's like constantly facing a brick wall. I've had an senior gastro doc tell me something that's patently not the case but, he's not listening to my view and will merrily tell other patients the same. It's too bad that the various auto immune diseases leave you so wiped out and in a poor state to stand up to the medics and fight your corner. I've got my next endo appt in the new year and will be facing up to my gp and asking for print out of the various blood results that he's taken whilst carrying out my care and then asking endo for alternative meds but with the cuts now in place I feel my chances are slimmer than ever.
PS. I'm in a position now to afford private tests if necessary but that certainly wasn't the case when the kids were younger and money was tight. It shouldn't be the case that these tests are only available if you can pay, especially if you end up with results that the nhs won't recognise.
• in reply to
Thank you Irene,
I'm happy you could understand the explanation of how I think it all works. The doctor really should be working with his patient, not against them. I think the idea is that you look around until you find one willing to work with you, or you can go it alone.
I never see my own doctor, he's rude and arrogant but I'm moving house soon so before I register with a new doctor I will join a local thyroid group and see if any of them can recommend anyone.
It's true that you shouldn't need to fight the docs when you're at your worst, but there are several Thyroid Charities who are calling and fighting for change. Hopefully they will make a difference.
This is my problem exactly: too low a dose of levothyroxine, and I lose all my energy and enthusiasm, become very 'sad', and get an anxiety/paranoia thing. This isn't me at all - I'm naturally energetic, sporty, hardworking etc, etc, and so it's very depressing to lose control like this.
However,on the dosage I'm getting at the moment (300mcg) I don't feel right either - strange sensation of heaviness in limbs, trembling hands. I am sure that I must have a problem with T3, but can't get it prescribed.
This is just how I was and the answer for me was to increase my medication at a painfully slow rate.
When I increased by just 12.5mcgs for a few weeks then I would "lose it" and be paranoid etc just like you said.
I cannot cope with large increases or decreases in meds.
I don't understand why you and so many others are prescribed anti depressants as GP's are treating a symptom and not the cause.
Depression is a classic symptom of hypothyroidism (as is weight gain) so as soon as you are fully medicated (when your TSH is under 1 and your Free T4 is at the top of the lab range) then you will start to feel better.
Let us know that you have read our replies and ask away if you have any further questions.
Thanks for all your replies. I understand what you're all saying, except the T3 reverse. I last had my T3 checked by the Endo about 2 years ago, it has always been at 4.
After taking thyroxine, I leave about an hour before having breakfast. I make sure that I take my iron over 6 hours apart.
I'm extremely sensitive to increasing and decreasing thyroxine, this is why I went to the Endo. I had a hard time with my GP and Endo. In the end I just gave up and went on anti depressants. This had led to weight gain. When I try to come off the anti depressants I start to feel extremely depressed and have huge anger problems. I end up hating everyone around me. Then I start thinking what's the point in living like this.
I'll ask my GP for a T3 test, but I know he won't do it because he says it's only the TSH and T4 that they look at. I will have to enquire about private blood tests.
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