Meet Endo on 23rd. Story and plan?

[thyroidquestions]

Hi Team!

I'm Hashi diagnosed 2008. Male now in 50s. Pro athlete in my twenties and pro playing coach in my thirties, but thyroid stopped energy/most active work in forties :(. And I want my life back now. Levo 125-175mcg only in that time. Generally poor response but variable - some days OK-ish, but headaches some days, so bad I can't work, low energy, brain fog, very bad carbo/sugar cravings leading to weight gain. But I'm learning more here now! I meet an Endo on Monday for first time ever. What should I approach with? Below are my Medichecks UltraVit results from 2 days ago. I've been on lower (125mcg) Levo and clean diet 3 months which has felt considerably better. I went cold turkey from Levo for 7 weeks in January just to get off any allergies or side effects and I felt great and it reduced food cravings a lot, so this got me on the right track, but my TSH went to 86 and FT4 to 4.2!! So not sustainable. Now testing whether headaches at least partly related to fillers in brand of Levo (was on a cocktail of Actavis, Teva and Wockhardt so I tried Wockhardt only and maybe better for headaches as few in last 4 weeks?).

OK so my results below (will need to do it again in 2 months on same meds to see if my cold turkey is still playing out, though I ended the cold turkey 29 March and 125mcg from that day)...

THYROID STIMULATING HORMONE 3.56 mIU/L 0.27 - 4.20

FREE THYROXINE 20.6 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 108.0 nmol/L 59.00 - 154.00

FREE T3 4.97 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY *188.000 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES*169 IU/mL 0.00 - 34.00

ACTIVE B12 59.200 pmol/L 25.10 - 165.00

FOLATE (SERUM) 19.98 ug/L 2.91 - 50.00

25 OH VITAMIN D 79 nmol/L 50.00 - 200.00

CRP - HIGH SENSITIVITY 1.48 mg/l 0.00 - 5.00

.

FERRITIN 264 ug/L 30.00 - 400.00

Vits: I think you'll say get my Vits up the range more eg liver for Ferratin (OK - on it!). What ways/brands to take for Folate, B12? I sometimes take D3 drops (Nutri Advanced with K2) 2x 3 drops per day and will take regularly now, plus it's Summer.

Bloods: But....bloods - but what's this top range FT4 on only 125mcg, and TSH still high-ish? Where do I go with that one? Does it mean my thyroid gland is partly working and not too badly damaged/dead?

And does this show my conversion to T3 is good, or not?

Thanks for any support for my insight and for my prep to see Endo Monday.

I feel I'm gradually making some progress now with my thyroid puzzle - with the help from this Forum :). Thank you so far! Onwards....

[greygoose]

You have a conversion problem, yes. It often happens with Hashi's. And a little T3 with a reduced dose of levo would probably help enormously. But I'm not sure your endo would be of the same opinion!

[thyroidquestions in reply to greygoose]

But my FT3 is quite high enough No?

[greygoose in reply to thyroidquestions]

High enough for what? To feel well? Probably not. It's just mid-range. Most people on thyroid hormone replacement need it up near the top of the range to feel well. If you feel well, then fine, it's high enough. But, if you don't, if you still feel hypo, then the best thing to do is add some T3.

Your FT4 is quite high, so adding more levo would probably take it too high, and that would reduce your conversion further. Because more T4 would be converted to rT3 than T3. To avoid that, reduce the levo - which will improve conversion, and add a little T3.

[thyroidquestions in reply to greygoose]

Thanks so much GG! Nice explanation and will take this view to the Endo.

[greygoose in reply to thyroidquestions]

Hmmm Doubt the endo will know anything about rT3.

[shaws Administrator]

I agree with greygoose that a T3/T4 combination might benefit you and make you feel well.

Due to the removal of this Active Thyroid Hormone (T3) from now being prescribed, many have had to recourse to sourcing their own.

Researchers have proven that a combination helps many.

[thyroidquestions in reply to shaws]

But my FT3 is quite high enough No?

[shaws Administrator in reply to thyroidquestions]

T4 is an inactive thyroid hormone. It has to convert to T3.

T3 is the only active thyroid hormone and yours could be higher and research has shown a combination of T3/T4 suits many. The following reveals all:-

"Pro athlete in my twenties and pro playing coach in my thirties, but thyroid stopped energy/most active work in forties :(. And I want my life back now. Levo 125-175mcg only in that time. Generally poor response but variable - some days OK-ish, but headaches some days, so bad I can't work, low energy, brain fog, very bad carbo/sugar cravings leading to weight gain."

Levo, despite dose, seems not to have worked some magic in relieving your health and enabling you to recover. Therefore, results are meaningless in a way. We used to be diagnosed on our clinical symptoms alone (no blood tests to restrict us) and were given NDT (natural dessicated thyroid hormones) which contain all of the hormones a healthy gland would. That was withdrawn from the NHS and now T3 has been, leaving patients with no recourse but to source their own.

I shall give you link from a doctor/scientist/researcher who was also an Adviser to TUK before his untimely death. The second has topics which are informative but some links within may not work. He would never prescribe levothyroxine only NDT or T3 for thyroid resistant patients.

web.archive.org/web/2010112...

/your.guide.to.metabolic.health/12%20Chapter%207.Thyroid.pdf

web.archive.org/web/2010103...

He took a blood test for the initial appointment only, thereafter it was all about how the patient 'felt' on doses until symptoms resolved. Also our vitamins/minerals also have to be optimal.

Everything works together.

[thyroidquestions in reply to shaws]

Excellent Shaws. Will take these views to Endo with me for their consideration/response.

[shaws Administrator in reply to thyroidquestions]

Unfortunately for many of us Endocrinologists don't want to read anything the patient brings it. Whether they take it as a slight that they don't know very much or not I'm not sure.

As far as I know the Endo Society only seem to acknowledge TSH and T4 and nothing about the other more important hormone.

It will be interesting to know the professional's opinion.

If you are in the UK, Endo's hands appear to be tied as they cannot now prescribe T3.

[thyroidquestions in reply to shaws]

Yep. I'm UK. Understood, Shaws. Will feed back but you may already have the likely answer from them! Will they go for lower TSH at risk of higher T4 I wonder?!