Desperate for help - Thyroid, NDT, any docs in ... - Thyroid UK

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Desperate for help - Thyroid, NDT, any docs in Scotland? UK?

frannymc profile image
9 Replies

Hi all, my thyroid antibodies have increased from 200-odd to near 1000 after nearly 4 months of selenium, gluten/sugar/dairy-free and b12 shots. I also feel rotten with no energy and the whole gamut of symptoms so I am now looking to take NDT.

I know I can buy it online but I wondered if anyone knew of any doctors in the UK who would prescribe it private? I'm based in Glasgow so local to here, or Skype appointments.

I have also been on a candida cleanse so wondered if anyone knew of candida die of increasing antibodies? or B12 shots? I'm bewildered as to why they have gone up.

Any thoughts will be hugely appreciated, f, x

Test results below....

B12- 2000 (200-900) - I'd just had my 3rd shot 9 days before the test.

CRP - 7 (0-10)

Antibodies- 963.9 thyroid

Test results from April below:

CRP H 6.10 <5.0

Ferritin 89.5 20-150

Magnesium 0.98 0.6-1.0

TSH 2.93 (0.27-4.20)

T4 Total 95.2 (64.5-142)

Free T4 13.46 (12-22)

Free T3 4.46 (3.1-6.8)

ReverseT3* 21 (10-24)

Reverse T3 ratio 13.83 Normal >15; Borderline 12-15; Low <12

Anti-Thyroidperoxidase abs 324.5 <34

Anti-Throglobulin Abs 432 <115

Vitamin D (25OH) 65 Deficient <25; Insufficient 25-50; Consider reducing dose >175

Vitamin B12 288 Deficient <140; Insufficient 140-250; Consider reducing dose >725

Serum Folate 14.37 (8.83-60.8)

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9 Replies
Clutter profile image
Clutter

Frannymc,

Four months isn't long, you probably need to wait a year after going g-f to see if antibodies drop, longer for some people, and ultimately there's no guarantee gluten-free diet will reduce antibodies for everyone.

NDT isn't licenced for UK use so you're unlikely to get it prescribed on the NHS. Email louise.roberts@thyroiduk.org for a member recommended list of endocrinologists and private doctors. Contact their offices to check they prescribe NDT before confirming an appointment.

TSH 2.93 indicates your thyroid is struggling and FT4 is low in range although FT3 is currently good. I don't think you will find a private doctor to treat while TSH is <3.0. NHS won't diagnose hypothyroidism until TSH is over range or FT4 below range.

Not sure why rT3 is flagged with an asterisk. 21 is within range.

B12 is high because of your recent injection.

Folate is good.

CRP is an inflammation marker and 6.10 indicates you have some inflammation in your body. It could possibly be due to Hashimoto's.

Ferritin and magnesium are good.

Vitamin D is inadequate. Most people are comfortable with vitD 75 - 100. I would supplement 5,000iu D3 daily and then reduce to 5,000iu alternate days and retest in April. Take vitD 4 hours away from Levothyroxine.

frannymc profile image
frannymc in reply to Clutter

Hi Clutter, Thank you for your help. I emailed Louise and she's sent me a list of private doctors - so that's amazing. I'm not on any medication at the moment but was looking into taking NDT. I will up my vitamin D and see if it helps. I'm largely housebound at the moment with ME/CFS and the weather in Scotland has been lousy so not much opportunity to even get into the garden this summer.

greygoose profile image
greygoose

Even if you're gluten-free, taking selenium, etc. etc. etc., you aren't going to reduce your antibodies with a high TSH like yours. It needs to be suppressed. You need an increase in dose. Your pituitary is still trying to stimulate your thyroid, and your poor thyroid is trying to respond, and that stimulates the immune system to attack the gland, and that's why the antibodies are high.

And, at the same time, you are struggling to feel well, because your Frees are too low. If you take enough thyroid hormone to raise the Frees, the TSH will go down and so will the antibodies. You are badly under-medicated. :(

frannymc profile image
frannymc in reply to greygoose

Hi Greygoose, thank you for your help. I'm looking to get some NDT and hopefully get back on my feet! There's so much information out there and I find it difficult sometimes working out what's relevant and what's not - so your clear insights are an utter tonic.

greygoose profile image
greygoose in reply to frannymc

You're more than welcome. :) Any time you have a question, don't hesitate to ask. There will always be someone to help you.

SlowDragon profile image
SlowDragonAdministrator

Did you leave 24 hours between taking Levo and blood test? Was test done early morning and fasting?

Your TSH is too high and FT4 too low. This indicates you could cope with an increase in dose, as greygoose suggests

As you are on B12 injections are you also taking a good B complex to keep all the B's balanced. It will also improve folate.

Remember to stop taking any supplements with biotin in (all B complex) 3-5 days before any blood tests as biotin can falsely affect test results

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

Vitamin D is not high enough. With Hashimoto's we need or use more. Vitamin D mouth spray is good as bypasses gut issues.

Do you use bone broth to help heal gut

thyroidpharmacist.com/artic...

frannymc profile image
frannymc

Hi Slowdragon, thanks for your help. I don't know that about B vitamins affecting test results. I will keep that in mind for the future.

I'm not on any medication at the moment but hoping to get some NDT.

I've been on a candida cleanse for the past 4 months as I tested positive for candida overgrowth on a CDSA I had done privately. I take L-glutamine and the candida balancing things and a host of other supplements for ME/CFS as recommended by Dr Myhill. I haven't used bone-broth but I can introduce it. I was vegan for years when I was younger and more of a green juice person but now realise that all that kale and spinach could have been the very wrong thing for me to do.

frannymc profile image
frannymc

I've just had a look back and my results from 2 years ago were:

TSH was 1.6 now 2.93, T3 was 1.9 now 4.46, and T4 was 12.8 now 13.46. Does these increases show something? i.e. getting worse ?

vicpete profile image
vicpete

most people should not take cyancobalamin, as they are homozygus. instead take the b12 form of methylcobalamin and avoid folic acid and take the correct form as methyl folate.

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