Suspected Hashimotos? Now what?

[Llan12]

Hi There, back in March this forum was kind enough to help me with some thyroid results I had. I've done a re-test 7 months later and numbers seem to be moving in the wrong direction. Can anyone advise what next steps might be? Is this definitively Hashimotos?

In March I paid to see a private GP who noted my then raised antibodies and put me on a trial of 50mcg Levo for 3 months which didn't appear to do much (but I didn't feel worse). When I went to my normal GP in June to try and continue the prescription she wouldn't prescribe it as my tests weren't from the labs they use and requested 'advice and guidance' from an Endocrinologist which hasn't appeared.

I have been gluten free from 3 months but still see weight gain, tiredness, general well being not improving so feel I need some clarity/plan of action.

Antibodies getting higher, as is TSH-are these significant? I am fortunate to have Bupa cover, should I just go straight to an Endo for a definitive answer?

TIA.

[Llan12]

Vitamin/Iron results from same test also attached

Vitamins

[weedee41 in reply to Llan12]

Hi Llan12,

Was there a reason you didn't request another prescription and follow up through the private GP?

In relation to help through NHS, very much doubt it with those results. My results have been all over the place (they are on my profile) and I have much higher antibodies and have been told three times there isn't anything wrong. Most GPs don't seem to understand the antibodies and are very quick at brushing them under the carpet. So I had to go private to get the treatment I need too.

Ferritin could be a bit on the low side, seen on here its recommended it should be about 90, but I dont know enough to advise on that, hopefully someone a little more clued up can help there.

[Sparklingsunshine in reply to Llan12]

Unfortunately although you have slightly raised Trab antibodies they arent that high, and even if they were the NHS wouldnt treat until your TSH goes over range. On two seperate occasions. With a TSH of 2 GP would just say everything is normal.

The fact you have slightly raised antibodies COULD mean you might go hypo in the future, but equally you might not. We all walk around with lots of different antibodies sloshing around inside us but for many they never cause an issue.

[Dahliasanddaisies]

Hi Llan, you had some good advice last time and the same is still really true. The NHS won't do anything with these kind of results. Youre not classed as Hypo. It may obviously get worse in the coming years. I've no idea if a private endo would do anything either. You don't say how old you are? Could it be perimenopause causing your symptoms?

[GlowCoach Administrator]

50mcgs Levo is just a starter dose. Usually you would take that for 6-8 weeks then retest and titrate upwards by 25mcgs, rinse & repeat until TSH is at or just below 1 where most people feel well. Likely that 50mcgs just was too lower dose to make any difference to how you feel.

To get a diagnosis & begin treatment on the NHS you need 2 TSH results above range, 3 months apart (NHS tests not private) or 1 TSH result above 10.

Although you do have Hashimoto's it looks like you're in the early stages and you results can change rapidly either way for quite some time before eventually the thyroid is so destroyed it cant put out enough at all and you need to start Levo.

One problem with beginning Levo privately is that the NHS will be reluctant to take over the prescription if they dont agree with the diagnosis. They can also try and make you stop taking levo at some point in the future which obviously isnt good at all.

What time of day were these tests taken?

Highest TSH is at 9am or earlier, fasting with no biotin supplement for 4-7 days before the test.

High antibodies would be in the hundreds or thousands so yours are relatively low although positive.

Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc

Link with ideas for dietary iron:

dailyiron.net/

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...

[Llan12]

Thank you so much for your replies, it's help clarify things for me. In answer to your questions...

I'm 40 so yes, I hate thought perimenopause could be at play to- so hard to get clear picture!

Tests were taken 6am, no biotin had before hand.

Thanks also for the links for vitamin info.

Is it an inevitable conclusion this will get worse or something I can try and manage if GPs not interested?

[GlowCoach Administrator in reply to Llan12]

Its pretty much inevitable that things will get worse but that can take quite a few years. In the mean time it will help you to keep on top of vitamin levels maintaining them at optimal.

Retest every 4 months or so early in the morning, fasting, no biotin for 4-7 days before.

It really is a waiting game.

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...

Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc

Link with ideas for dietary iron:

dailyiron.net/

[Llan12 in reply to GlowCoach]

Thank you for the guidance on the levels

[SlowDragon Administrator]

so was August test when on no levothyroxine

How long since you stopped

ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

Maintain at OPTIMAL levels

Vitamin D at least 80-100nmol

B12 at least over 80

Folate higher

Ferritin at least over 70 and nearer 100 may be better

[Llan12]

Yes I finished the levo in June. I will certainly keep up the checks on my levels. Thank you for the info!