Hi, Haven't posted in a while as I've been trundling along not great, but not too bad either, until a week ago when I started to feel pretty awful. Low energy, anxiety, various intermittent random chest pains, gripey stomach etc etc. I'm on 125mg Levo, B complex vits, Vit D (4000ius), Vit K2 (100mg), Magnesium (100mg), plus amlodipine, bisoprolol, ranolazine for my arteries. I've stopped statins due to side effects and doubts about their efficacy.
3 weeks ago had an NHS Blood test, initially the lab lost results and then I only got the levels - no range. However I've added on the ranges from previous tests. I followed recommended protocols on timings etc ie. before 0900am, no levo for 24 hours and no biotin for 4 days.
I note my FT3 % is down to 15%!! however my consultant says all levels are looking good (he's a Nuclear Medicine dr.). Over the last year the trend of my FT3 seems to be dropping. I'll attach a graph of the FT3% if anyone wants to see it. I've done graphs of the other levels as well. My August FT3% was 45%. Does it take weeks for the effects of the low FT3 to kick in?
After having put it off at long last I've decided to seek out a private Endo, unfortunately there are precious few down here in the Plymouth area. Do anyone know of an Endo that does Zoom consultations? I've checked the TUK list of Endos. Any thoughts as who to turn to as my current Dr. is so hard to get hold of and doesn't believe in Supplements!!
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Devonlad
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Your T4 to T3 conversion is poor so your FT3 level will have been slowly dropping and and you are now suffering the consequences
Since you have followed protocols your labs should be reliable.
For good health every cell in the body needs to be flooded with T3 by way of an adequate and regular dose....
Low cellular T3 = poor health.
Adequate T3 has to reach the nuclei of the cells, attach to T3 receptors and become active before it fulfills it's function
If cellular T3 is low metabolism slows down causing various problems including low energy.
The 125mcg levo you are taking is not converting into adequate T3..
Your medic clearly doesn't understand this....you need to add T3 but that may be a challenge I'm afraid because most medics either don't understand, or are afraid of, T3.
I hope your GP isn't referring to T3 as a supplement....it is a bio identical replacement hormone!
A private endo may be able to help ....or you could self source and self medicate.
Thanks DippyDame, I knew my T3 was low, but it's reassuring when I hear it from someone else. My GP has effectively washed his hands of my Thyroid issues saying it's complicated!! The Dr I was referring to was my Nuc Med Consultant, I have no Endo, and when I asked him about Vitamin supplements he said 'I don't know anything about vitamins' - unbelievable. Have you any suggestions about self sourcing/medicating as I've not done this before.
As a matter of interest here's my graph of FT3% through range, which I've sent to consultant.
Hi Eeyore, Thanks for the link I'll look up Roseway Labs, when you say they'll prescribe do you mean they'll do FT3? Trouble is I've got no prescription for FT3 and don't really know how much I'll need - a low dose I suspect.
As far as I'm aware you can have a consultation with them and they assess and monitor your need for T3 and will even compound specific doses for you... I'll put a shout out to Regenallotment who is very pleased with their service
Just as an added, do you think increasing my T4 from 125 to 137.5 might help my T3? I used to be on it until early In the year, I also still have plenty left. Thanks again
The only change has been a slight increase in my heart meds, due to chest pains (though with hindsight this might have been due to low T3). Thyroid meds have been the same.
Yes, I do take my levo at between 1am and 4am, depending when I wake up for the loo. This way isn't a problem for me. Really appreciate you help and thoughts on all this as I'm still learning to live with all this.
You've a lot of balls to keep in the air! I'd be inclined to talk with Roseway as you are very obviously conscientious with your record keeping and med taking but it really looks like you need to add yet another ball in the form of T3 🤗
Yes, I''ll give them a call tomorrow and sound them out. Up till now I've steered away from forcing the issue as there seemed to be a bit of bad vibes around T3, but enoughs enough and I need to sort it out. I'm also going to push for a consultant change to an Endo as opposed to the Nuclear Med one I've got now, but that will take months with the current state of the NHS.
Yes Roseway make you a completely legal private prescription and also dispense the T3 Liothyronine. You fill in a form and send them recent blood test results. Then have a call. Then they email a payment link, you pay and they post the prescription to you. Takes 4-5 days. really rate their advice and three months supply cost me £75 last time. 🌱
Thanks for your kind response, sounds very interesting, does it make a difference as I do not have a T3 prescription, only T4, but I do have blood test results going back 12 months plus
I dont use Roseway for T3 but I do use them for something else, their prescriber is a GP so can prescribe T3 if you both agree on it and then she sends the prescription electronically over to Roseway for them to dispense and dispatch.
She only consults via phone on Wednesday afternoons if memory serves, so you will need to pre book if you decide to go ahead.
I see Dr Paul Jenkins via zoom on Harley street. I went to London for my first consultation In person but the rest on zoom. He believes T3 should be in upper quartile.
Liam Gallagher of the pop group , Oasis, consulted the Harley Street Consultant mentioned. He had a nodule and now has a Hashi diagnosis for hypothyroidism. He is not cheap, but was Liam Gallagher's choice of Endo.
Just had an out of the blue phone call from consultant following my sending him graphs of my FT4, FT3 and TSH levels over the last 18 months. He admitted that my FT3 levels were rubbish (he used another word!!). He admitted he had just done a load of reading on FT3 (why did he need to do that, surely he should have done that a long time ago). He said he's not happy about prescribing FT3 as a survey/trial he'd just seen (dated last year I believe) said that there was a 1.6x likelihood of a cardiovascular event and even higher likelihood of a stroke. As I have coronary artery disease and get angina and on meds for it he decided the safer option was to increase my Levo from 125mg to 137.5mg as his graphs showed that when my T4 was increased my T3 followed showing there was a correlation between the two.
I have also booked an appointment with Roseway Labs in the near future and it will be interesting hear what they say about FT3.
I'm not convinced he has come to the right outcome.... but then he is the specialist (now he has read fT3 page) 🙄 Obviously I have no knowledge of heart conditions other than how essential fT3 is for it to working well
You might want to ask him about the risks of above range fT4 as you are already top of the range?
That's a very good point about excess ft4 - thank you, I'll do some research and ask the question. I've just emailed him with a link to a video with Professor Antonio Bianco from Chicago talking about ft4/ft3 combo, that's came out a month ago, interesting to see if there's any reply.
I'll be interested to hear any views on increasing my Levo as outlined below and if this is likely to increase the likelihood of angina/heart issues. Conversely would adding a small amount of T3 affect it (I appreciate I might have to lower my Levo dose ). I've read about issues with AFIB, but confused as to what might cause it.
I've just received the follow up letter to my GP following my telephone call with my consultant last week which says "Mr xxxxx is keen to try Liothyronine medication but I must say that at the moment I would like to strongly discourage that. I have emailed Mr xxxxx a graph of his FT4 and FT3 readings over time over the course of the last year and they run in parallel which to my mind means that he is able to convert FT4 into FT3 and if we could increase his FT4 a bit the FT3 should follow..." He then says he's increased my Levo from 125mcg to 137.5 mcg. With a follow up blood test in 2 months. I am now taking.
His graph is just above. Though he says I convert T4 to T3, I don't think I convert it very well.
I'm still proceeding with a planned phone call this week to a private Dr. in the hope that I'll get a T3 prescription - though whether or not I take the T3 I'm not sure. My quandary is do I stick to the suggested 2 months wait for another blood test or go against the consultant's advice with possible ramifications for the future?
I'm looking forward to getting Bianco's book Rethinking Hypothyroidism: Why Treatment Must Change and What Patients Can Do which might throw some light onto my confusion.
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