Next steps after endo - help please: Hi everyone... - Thyroid UK

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Next steps after endo - help please

laelow profile image
5 Replies

Hi everyone,

I'm on 100mg thyroxine for Hashimotos. I also have CFS (or do I... hoping these symptoms are at least in part due to unresolved hypothyroidism). TSH and T4 have always been 'normal' so from the NHS's perspective problem solved. But I still feel awful. Sound familiar?! There seem to be so many of us in this boat.

So, after doing some reading on here and elsewhere I had a full thyroid check done through medichecks a couple of months ago which raised the issue of T4-T3 conversion (results attached). My GP wouldn't refer me on the NHS as these results (T3, rT3) aren't used apparently. So I paid to go and see a private endo recommended by my GP.

It was a frustrating appointment as he didn't really see to grasp the severity of my fatigue and weakness, and was very quick to ascribe my symptoms to CFS (and even looking after my daughter - "children make us all tired"!!!) rather than anything hypo. But on the plus side, he did agree to write me a private prescription for T4/T3 combination therapy or Natural thyroid (Erfa) on a 4 month trial to see if it makes any difference.

The costs he quoted for both seem very high (£150/month plus £150/year dispensing fee, plus fees for private blood checks) and I'm wondering whether it would be better for me to self-treat and monitor, especially given I didn't really like him. My inclination is to try natural thyroid first, but I'm not sure which brand is best, and where I can buy it from a reputable source without a prescription. Is this even possible?

So I'm after advice anyone can give me about sourcing reliable NDT, dosage, transitioning from thyroixine etc. Thanks for your time.

NB - I'm aware my vitamin D, iron, B12 etc are low and have been supplementing since these results.

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laelow
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5 Replies
fibrolinda profile image
fibrolinda

you really need to do your profile with relevant info so people can see your history. you're not converting are you so could do with t3 so need to do a new post asking if anyone is happy to tell you where they source t3. People are wary as many sources of t3 and ndt have vanished/been shut down. good luck

linda

Marz profile image
Marz

How much of each supplement are you taking ? Also agree that your FT3 is low - however with improved levels of vitamins and minerals the conversion may well improve too - hopefully :-)

Clutter profile image
Clutter

Laelow,

It will be considerably cheaper to buy your own NDT and arrange your own thyroid blood tests.

There is no best brand, the brands which suit you are the best and the only way to tell is to try them. You could start with Thai NDT Thyroid-S or Thiroid which many on the forum use and if they don't suit try NatureThroid or WP which are supposedly hypoallergenic.

How much iron, vitD & B12 are you taking? Make sure iron and vitD are taken 4 hours away from Levothyroxine.

laelow profile image
laelow

Thanks everyone for your responses. My vitamin supplements are:

Vitamin D3 - 3000iu

B12 - 150mcg

Iron - 16mg

I take them at least 4 hours away from thyroxine.

I think I'll start a new thread to ask people to message me with where they get their Thai NDT. How much do you think I should take to replace 100mg thyroxine? Should I start with the full amount or transition gradually? How often do I need to check my blood results?

Thanks so much for your help, it's invaluable and so much more useful than the expensive endo!

laelow profile image
laelow

Thank Mo, I'm a Dr Myhill fan, I have her books and follow her suggestions as closely as possible 👍🏻

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