Thyroid UK
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Your Advice on Results Please

Your Advice on Results Please

Many thanks for your replies to my previous post.

I have just received my blood test results from Blue Horizon. I would really appreciate your thoughts.

A brief summary so far....

In 2016 I was diagnosed with Toxic Multinodular Goitre causing hyperthyroid.

After titration on Carbimazole - never stabilising and always feeling grotty. I was started on block and replace in January this year, originally on 20mg Carbimazole twice daily and 100mcg Levothyroxine once daily, but Levo decreased in May to 50mcg.

I seem to fluctuate from feeling hyper to hypo all the time and never feeling well.

Thank you so much.

13 Replies
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Your results suggest you have Hashimoto's rather than Graves' disease. Though you can have both

Did you ever have TSI or TRab antibodies tested for Graves by endo or GP? (You can't unfortunately get these tested privately)

Are you still on carbimazole?

Your very under medicated for Levothyroxine at present. Ask GP for 25mcg dose increase next week

FT4 should be near top of range eg 18-19

Your vitamins are low because of Hashimoto's and being hypothyroid. Low vitamins affect Thyroid and low thyroid levels affect vitamins.

GP should test for Pernicious Anaemia before starting B12 injections. Folic acid supplements should not be started until 48 hours after first B12 injections

Vitamin D is deficient. GP should treat, but very likely only prescribe 800iu cheap tablets. NHS Guidelines say you need minimum of 1600iu daily for 6 months

oxfordshireccg.nhs.uk/profe...

Aiming to improve to around 100nmol.

Self supplementing with Vitamin D mouth spray by Better You is perhaps better option as avoids poor gut function. Suggest you try 2000- 3000iu for 2-3 months and retest. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Only start one supplement at a time or make one change at a time and wait at least a fortnight to assess the effects.

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Many thanks SlowDragon.

I am on Carbimazole - 20mg twice daily.

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Have you ever had TSI antibodies tested also sometimes called TRab antibodies tested to confirm you have Graves' disease

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I don’t think so.

My GP wasn’t very helpful when I asked last week.

She couldn’t find results there, but said she wouldn’t have had a copy of those done while I was in hospital......she just said she was sure I would have had antibodies checked and they must have been ok and wouldn’t have changed since then!! She also wouldn’t get my Vitamin D checked as no one is deficient with this sunshine!!

Ah well. I’ll take these results with me when I see her this week and see how that goes 🤔

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Who diagnosed you in 2016? An endocrinologist or GP

Absolutely insist that you want to see record of having had TSI or Trab antibodies tested to confirm it was definitely Graves' disease

These results suggest you have Hashimoto's

Hashimoto's does not normally require carbimazole. You are now very hypothyroid. Carbimazole perhaps needs reducing and Levothyroxine increasing by 25mcg.

It is sadly not unusual for medics to assume high FT4 and FT3 is Graves, when actually it can be Hashimoto's

Politely point out to GP that you did request vitamin D testing as it's very common with any autoimmune disease

holtorfmed.com/vitamin-d-au...

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I was diagnosed while in hospital when I broke my ankle. I hadn’t realised the symptoms I’d had were to do with my thyroid.....I had put them down to the menopause!

I didn’t actually see an Endo while in there, apparently he came to see me while I was in Theatre.

I was sent home with 20mg Carbimazole daily with instructions to have blood tests every 6 weeks if results were normal to reduce by 5mg each time.

I didn’t feel at all well right from the start and spiralled from from extreme hyper to hypo symptoms and back again over the year. Each blood test the Carb was either increased or decreased depending on the results.

The Endo left and I then saw a locum Endo in January this year and he put me on the block and replace.

I’m not sure whether they originally tested for the Graves antibodies.

I’m so glad I have found this site. Thank you so much for your thoughts.

I plan to see my GP this week with my Blue Horizon results.

I feel a bit better informed now and it has given me a little confidence to get a plan forward.

All thoughts and suggestions for me will be appreciated.

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An update.....I took my Blue Horizons results to the GP yesterday, a different GP to the one the other day😀. This one seemed to understand more.

He said we need to act on these results and arranged for me to have blood taken at the surgery yesterday.

He is on holiday next week, but I have a phone appointment booked with him the 31st July.

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Was your blood test yesterday taking at the Earliest and fasting. If not the results will be skewed.

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Luckily I had a thought that he might want to take bloods to confirm the results of the Blue Horizon test, so yes it was fasting and around the same time the BH test was done (10.30 am).

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Lucky you :)

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Doesn't it surprise and shock us when we've been struggling - many for years - yet remain undiagnosed or wrongly diagnosed.

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It can be such a ‘relief’ to finally have it confirmed that something is wrong......and not to keep thinking you are going mad or imagining things! 🤔

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I don't know why they don't do a test autoimatically if we have vague symptoms initially. The 'old school' of doctoring' knew all symptoms and we got a trial of NDT.

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