Blood results, endo has no more suggestions, what do you think?

[SilverAvocado]

Hi,

I've just got back from an appointment with my endo where she said there's nothing else she can do for me, and she's made me an appointment with a psychologist and suggests I see a Fibromyalgia specialist.

I've got no thyroid as it was removed due to thyroid cancer (full details in my profile), and have seen tiny steps of improvement as my dosage has been increased, but I'm still largely house bound and struggling to prepare meals and dress myself regularly. The endo says she can see no explanation for this in my blood results. Here are the later:

Dosage: 125mcg Levothyroine, 40mcg Liiothyronine

TSH = <0.05 (0.30-6)

Free T3 = 7.6 (3.6-6.4)

Free T4 = 16 (10-22)

PI Cortisol = 531 (140-500)

I asked her if it was a bad thing that the T3 was high, as I've heard that on these boards, but she said she had no idea about that! I am planning to go on the a private physician, probably Dr Chapman, and she said she thought it was a good idea. So she's open to other suggestions, but doesn't seem to have that much of a clue.

Would love to hear any comments on what these results might indicate. The only short term option could be reducing the liiothyronine a bit? Previously I was on 150 T4 / 20 T3, but I didn't feel any better.

Thanks all!

[Clutter]

SilverAvocado, your endo doesn't know how to help you so she refers you to psych and rheumy. What a flipping cop out and brass faced cheek!

I was similarly incapacitated when I was on Levothyroxine only. I felt minor improvement when I added in T3 but ultimately it was stopping T4 for 10 weeks and T3 for 4 weeks which cleared my system. I got it slightly wrong, of course, if I'd continued 2/4 weeks longer off T4 and continued with T3, I may have spared myself a very hypo month and recovery period.

I don't know whether I had a build up of T4 which needed clearing or whether it was rT3 caused by over replacement of T4, but 12/14 weeks after stopping T4 the tremors, parasthesia, palpitations, breathlessness, COPD, fibro and a host of other symptoms disappeared day by day. It was quite astonishing. I walking downstairs one day and realised I hadn't been holding the bannister with both hands because the leg tremors were no longer happening and I didn't fear my legs collapsing under me and pitching me down the stairs. The fibro pain meant I hadn't been able to raise my arms for months but I was suddenly able to brush my hair without putting my head between my knees.

Within 7 hours of starting T4 again I was having palpitations which intensified over two days and I became breathless. Within a day of adding T3 the palps and breathlessness stopped, and although I'm not 100%, and maybe never will be, I'm able to walk about a mile, do light shopping and light chores, whereas a year ago I was 90% bedridden. I'm still a work in progress, but I am improving.

My suggestion would be to stop T4 for 3 months and take 60mcg T3 until the T4 clears. I know you didn't feel well on T3 only but your bloods are good, and your slightly elevated FT3 isn't the reason for your continuing ill health. A buildup of T4 is likely the reason for it and the only way to clear T4 is to stop taking it. You may then be able to try 75-100mcg T4 + 20-30mcg T3 and hopefully will feel well enough to start rebuilding your fitness and stamina.

[SilverAvocado in reply to Clutter]

Thanks Clutter, that's really interesting. I'm kicking myself for not asking the endo if she could prescribe me pure T3, as it seems the obvious only other option in what she's able to do.

Last time I spent a day with no tablets ready for the blood test I did actually feel great.

Did you have a doctor advising you when you had that T4 break? Where did you find out about the idea?

Thanks loads!

[Clutter in reply to SilverAvocado]

SilverAvocado, I couldn't do anything much so I spent all my time researching the internet and thyroid fora, mostly here but also Paul Robinson, Mary Shomon, Hypothyroidmom. Google Recovering with T3 which Paul Robinson wrote. He has his own FB page and site.

My endo was completely useless until I went d-i-y. I had a meds review with a GP 2 weeks off meds and she advised against but I was on a mission and didn't want to hear. She was right, but her solution to resume T4 immediately meant I would be back where I started, and I was right to persist because I got the breakthrough I was looking for. It wasn't a breeze by any means but swopping all those symptoms for several weeks of bone numbing cold and crushing fatigue was worth it to me.

Once I was recovering nicely endo agreed to prescribe T4+T3 because my health had improved and 'cos he didn't like the idea of me buying it on the internet.

Have a count up and see whether you have enough T3 about the place to up to 60mcg a day. If not, you can top up online. PM me if you want a source.

[Brubru]

I'm with clutter and think all is a bit trial and error. I was unwell and lethargic lately and every morning I was struggling just thinking of having my medication. So decided to increase my Levo to 150 and stop taking T3 25mcg. Feeling much better these two days. Not sure if we can get toxicity