Have arranged phone consult for tomorrow, but where do I start?

[Jenny583]

Hi wonderful TUK lot,

I had really bad dementia last month, got MMH blood test last month which took 3 weeks to finalise, letter arrived for unexpected appt with a lady Endo a ,week or 2 before mmh test results. I have been in so much pain between shoulder blade & spine. I was in agony last week. I was on 125mcg of levo till last month, but dropped 12.5 off after phlebotomy test. BP went even higher.

BP at the endo clinic was over the top of the range in both dystolic & systolic. Right arm at top of range, I think. She told me to drop another 12.5 off the levo, which I did, & gave me script for 28x 5mg amlodipine. I have home BP monitor too). At 1st BP lowered, though still higher in left arm, but now the tachycardia is really bad & BP very high. I was not able to collect the amlodipine from hospital till boxing day, ( 4 days later ), was too ill. I filled in the 4 days without amlodipine with 40mg propranolol from a 2017 script from previous surgery, which makes me wonder if it's the tachycardia that's driving up the BP? I believe the nocturnal tachycardia is adrenaline, I used to take small dose of propranolol at night to help me sleep, whenever lack of T3 caused problems. I would like to take small dose of propranolol at night. I may have to go it alone, & experiment. I have 80x 20mcg T3 still, (bought few years ago).

It looks to me like the Levo does not suit me, the only thing that helped keep my BP, & HR good was T3, even though serum T3/4 were low.

So now I'm wondering what I should say to the GP when he phones. Should I tell him what I discovered about the dangers of Levothyroxine, & should I stop taking T4 & get some T3 from a pharmacy that I have seen online? ( don't know if I'm allowed to mention name).

The consultant that I spoke to 2 or more years ago (when I was on a respected bovine whole glandular) told me to stop T3 -& told me that I have to go by symptoms & not private blood tests. The GP that prescribes the Levo knows that my TSH is almost absent on T4 & so ignores TSH.

But I have come across so many references to the bad effect of T4 on those with DIO2 issues (including 00.1 TSH, & symptoms of reverse T3 on even small doses of T4, also studies showing the importance of TSH for brain function & cellular conversion, to name just some - that I'm wondering if I should share my concerns with the GP when he phones. Sorry about the ramble, but almost no sleep & still a lot of lingering dementia! I have no way of knowing if the graves has come back, as I don't know if my thyroid still functions. Medical history has been 'lost'.

Also could the pain that leaves me bedridden be connected to the (female) heart? TIA!

[tattybogle]

Don't change anything until you have seen fT4 / fT3 / TSh results from 'whatever dose of levo you now take '.

What is it and . how many weeks have you been taking that dose ?

p.s just checking ....are you aware that propanolol reduces T4 to T3 conversion ?

I would be concerned about you going back to self sourcing thyroid hormone , as when you were doing that previously you seemed to find it impossible to maintain a steady/ reliable supply .

[Jenny583 in reply to tattybogle]

Thanks for response tattybogle. I was thinking ahead as regards any changes in future. I cannot put too much store by blood tests, they are just a guide & a look see if anything goes under or over. I reduced from weight appropriate 125mcg to 112.5 as soon as I could after the local phlebotomy test. MMH test came back on 1/12/22. 1 week after draw at

(0.01) tsh. -(20.9). t4, (5.6). t3. Local blood draw was I think on 6- 12 -22, & was more or less the same as the MMH test. Thats when I reduced to 112mcg, so there won't be any test for 112mcg, but on the 23/12/22 I reduced to 100mcg. The FT3 seems to drop when I increase the T4. My body works back to front & upside down compared to normal people...

Yes I know propranolol reduces T4 to T3 conversion, I took it for 25 years at high dose, & for 10 years also slow release. I had zero metabolism, & huge Dr's bills, wondering if that stuffed up my metabolism more than all the other endocrine dysrupters I was exposed to, but 10 - 40 mg until the T4 dissipates along with the heart/adrenaline/insomnia problems for a short while would not hurt surely?

I will cross the possible supply issues of T3 if & when they happen, right now I need to see if my low BMR/temperature stays or drops, also brain function, as I am way behind & live in a mouldy cave. But will discuss my concerns of scary T4 with GP.

[SeasideSusie Remembering]

Jenny583

should I stop taking T4 & get some T3 from a pharmacy that I have seen online? ( don't know if I'm allowed to mention name).

Just to clear this up, if this is obtaining T3 without prescription then no, you can't name the pharmacy.

[Jenny583 in reply to SeasideSusie]

Thanks, thought so.