Thyroid UK
84,274 members99,293 posts

Newbie with a question about NDT

Afternoon all,

Having struggled with a host of symptoms since January I finally found a fantastic private GP who diagnosed subclinical hypothyroidism in March based on my ever elevating TSH, low T4 and the advice of you wonderful people on this forum.

Ive now been on Levo for 6 weeks with one week at 25mcg and 5 on 50mcg, although I was starting to feel much better I have found this past week my symptoms have begun to return, particularly the fatigue and hand stiffness!

Im just wondering if this is common despite my doctor being happy with my blood from two weeks ago (at end of post)?

Im terrified of going back to how I was in January!

Ive been doing some reading and Im wondering if NDT might be a better option, particularly with the weight gain! or whether I just need to increase my Levo despite the good blood results?

Any advice is always really appreciated.

Thank You, L

Results:

TSH - 0.72 mIU/L (0.27 - 4.20mIU/L)

T4 - 18.100 pmol/L (12.00 -22.00pmol/L)

T3 - 5.05 pmol/L (3.10 -6.80pmol/L)

B12 - I inject once weekly since Jan having been found to have low levels back in Jan as such it is over 300 pmol/L (active b12)

Vit D - 96.1 nmol/L (50.00 -200.00nmol/L)

Ferritin - 138 ug/L (13.00 - 150ug/L)

10 Replies
oldestnewest

LeanneMarie

You've been on Levo for just 6 weeks, at a starter dose now 50mcg. What you are experiencing is normal, and shows you are ready for an increase in dose. Initiation and titration of dose is that every 6 weeks new tests are done and an increase of 25mcg Levo until your levels are where they need to be for you to feel well. This can take months.

Your current results show good conversion with your FT4:FT3 ratio of 18.1 : 5.05 = 3.58 : 1 and good conversion takes place when the ratio is between 3:1 and 4:1.

Your problem lies in the fact that you are undermedicated. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges. You would probably feel better with FT4 around 19.5+ and FT3 around 5.8+ and an increase of 25mcg Levo would possibly take you to those levels.

2 likes
Reply

Thank you so much SeasideSusie, your advice is really appreciated, I will mention this to the GP on Saturday :)

Reply

Leanne

Be prepared for your GP to tell you that your results are within range and you don't need an increase.

In support of your request for an increase, use the following information from

thyroiduk.org/tuk/about_the... > Treatment Options

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

Dr Toft is past president of the British Thyroid Association and leading endocrinologist.

You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org print it and highlight question 6 to show your doctor.

2 likes
Reply

This is great, thank you!

Reply

There's no folate result

Has this been tested?

You might benefit from adding a good daily vitamin B complex, especially as you self inject B12. This helps keep all B vitamins balanced

You could perhaps now reduce frequency of B12 injections or swop to sublingual B12

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

If so strictly gluten free diet often helps or is essential

1 like
Reply

Thanks for your reply SlowDragon my folate was 7.66 ug/L (2.91 -50.00) which Im assuming is on the low side? would taking folic acid help with this?

Ive been gluten and diary free for 3 years as I am also celiac, which is what was initially thought to have caused the b12 deficiency. I struggle with peripheral neuropathy symptoms because of this and find my symptoms return within a week of injecting though I do use sublinguals in between to keep it at bay.

My antibodies were just in range when tested in March but the Dr advised this can happen if tested when not experiencing a flare?

Reply

Folate should be halfway thru range ie 27 plus. You've answered my query re autoimmune antibodies...your celiac's creates a problem with absorbing vits/ mins from food and supplements, unless you nectar or try under tongue etc.

Reply

Yes thyroid antibodies go up and down. Also need TG antibodies tested, not just TPO antibodies

As you are coeliac do you supplement magnesium?

glutenfreeworks.com/blog/20...

It helps vitamin D, plus we often have low levels (both vitamin D and magnesium must be four hours away from Levo)

articles.mercola.com/sites/...

Peripheral neuropathy can be low B5 as well as low B12, hence recommended to take a good quality vitamin B complex, one with folate in , not folic acid. (Eg Igennus Super B complex)

drgominak.com/vitamin-d/

Getting vitamins optimal can improve uptake of thyroid hormones then Levothyroxine dose can be increased

Levothyroxine will need increasing slowly, but only once body is ready to use it

Reply

What you are describing is fairly typical - feel you are ok with dose increase but after a few weeks symptoms seem to reappear. 50 mcg is still a small dose , often regarded as a starter dose, and you are still only new to the journey to good thyroid health. On paper your results from 2 weeks ago might be perfect, but you can see you could afford to have more levothyroxin and still be within the endo' s normal range ie TSH goes down to 0.27( tho you will see blood results posted on the forum that are a lot lower than this). Your results indicate you are converting T4 to T3 acceptably as the ratio is within the 4:1 to 3:1 range, so not sure NDT would add anything at present. Could you up your levothyroxin dose yourself? Your Vit D is still rather low, you might be better with result nearer 150. What about folate? I suggest you look at SeasideSusie's replies re good vitamin/ mineral levels and use of supplements. Did you have any autoimmune antibody tests, to indicate you might have Hashimoto's?

Reply

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Reply

You may also like...