Confused

[Devonlad]

Just had a telephone consult with my Nuc Med Dr. over my latest results (See my latest update on previous post) for ease though here they are

TSH 0.44 Range 0.35-4.94 2.0% thru range

FT4 18.9 Range 9-19 99% thru range

FT3 3.7 Range 2.9-4.9 40% thru range

T4:T3 Ratio 5.11

Conversion T3/T4 0.2

These results are following me deciding to reduce Levo in January from 137.5 to 125mg daily, consequently my TSH has risen from 0.18 in January to 0.44 now. He will go along with this 125mg, but would 'prefer' me to go back 137.5 to keep my TSH suppressed in order to keep any remaining cancer cells down.

On the broader picture I suggested that I was not a good converter of T4 (as has been mentioned on here), but he refuted this and said I was converting T4 to T3 satisfactorily. I asked if I could go on a low dose trial of Liothyronine, but he said there was no need for that. I have averaged out my FT3% over the last 2 years and it is 51%, (which include a couple of spikes at around 80%). I do have a bar chart of all results over the last 2 years.

Obviously I don't want to increase the chances of any rogue cancer cells growing, but not sure what to do, if anything, regarding T3. My energy levels are currently just about OK, though I do 'empty the tank' quite quickly and would of course like to be better.

Any thoughts on how best to proceed and whether I am in fact low on FT3, or do I just go with Drs recommendation and try going back to 137.5mg and see what happens over the coming moths. My next NHS blood test is in 3 months and telephone consultation isn't for 6 months.

[SlowDragon Administrator]

When did you last test vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

For good conversion of Ft4 to Ft3 vitamin levels need to be at good levels

Do you feel better on 125mcg or 137mcg

Do you always get same brand levothyroxine at each prescription

Was test done early morning and last dose levothyroxine 24 hours before test

[Devonlad in reply to SlowDragon]

Many thanks for your reply. My vitamin levels, taken in Feb were Vit D 95 range 75- 200, Vit B12 457 range 145- 569, Folate 27.3 range 8.83-60.8, Ferritin 296 range 30-400, Mg 0.9 0 range 0.66-0.99

I do feel better in myself on 125mg

I do try to stay on the same brand of levo and pretty much achieved this over the last couple of months.

Yes my test was done as per your recommendations, no biotin, 24 hrs off levo and test before 0900.

[SlowDragon Administrator in reply to Devonlad]

Many endocrinologist won’t, in effect go against their employer and prescribe T3

Are you based in Devon

Maximum daily T3 allowed by Devon CCG to be prescribed on NHS is 10mcg usually as 2 x 5mcg (even though many patients need 3 x 5mcg per day)

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3

[e-mail]

Total number of prescriptions in England in last year

Typically 6 prescriptions per person per year

openprescribing.net/analyse...

Devon

openprescribing.net/analyse...

[Devonlad in reply to SlowDragon]

Sorry, forgot to add supplements I'm taking. Currently taking Vit D 4,000 IUs, K2 120mg, Thorne Vit B complex and Magnesium citrate 100mg

[SlowDragon Administrator in reply to Devonlad]

Remember to stop vitamin B complex 5-7 days before any blood test

any supplements containing biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement

[ElRR]

Would he be willing to decrease t4 medication and add in a natural dessicated thyroid medication? I'm not sure how the NHS is in your area for paying for that, some do, some don't. (If willing, but the NHS doesn't cover it, you'd end up with a private prescription, which could be pricey). If your doctor is unwilling to change the overall amount of medicine, this could be a good way to have a better balanced supplementation programme. I know there has been at least one study that has shown that patients taking T4 only vs T4/T3 combination had basically the same test results, but the T4/T3 group reported feeling better.

If you're not happy with how you're feeling, I'd fight for either adding synthetic T3 or a natural dessicated medication. Different things work for different people. I recently switched from synthetic T3/T4 combination to NP Thyroid and am happier.

If after advocating for yourself , (for an earlier consult, for different medicine, a different doctor....) you're still not on the right medicine, Metavive could be a good option for testing the medicine you want. Just beware that it could impact your bloodwork.

[Devonlad in reply to ElRR]

Thanks EIRR for your reply, I'd never considered NDT before. I don't think this Dr is open to any suggestions, he was pretty dismissive when I asked about T3. I'm down in West Devon and even if I was allowed T3 they only allow up to 10mg. I've never heard of Metavive, so will google it to see what it is.

At the end of the day I think I'm going to have to go private, which obviously I've been reluctant to do.