Am I being stupid by delaying treatment for mil... - Thyroid UK

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Am I being stupid by delaying treatment for mild hyperthyroidism when I don't have any symptons?

yvonne99 profile image
9 Replies

Very many thanks to all who responded and maybe I am being stupid as most idd recommend the use of carbimazole. There was however comments from some who had adverse effects, and as I have no symptoms at present, my concern at my age (72) is to remain active now, bearing in mind my husband's health problems and having to do all the work. As other problems/diseases can arise any time very soon, there may be no tomorrow anyway. This is not a morbid view, just a practical one. I have yet to write to the Endococrine Specialist, who was eager for me to use the radioiodine treatment and was not happy when I declined, but with whom I agreed to accept 5mg of carbimazole. However, as I was heading for the door it was his parting words “Bearing in mind the side effects of carbimazole, if you change your mind, just let me know” that I have reconsidered this and I am for the time being, I am declining any treatment. My doctor accepts my decision and is happy to do blood tests again in 6 months time. I am not sure why the blood tests for my thyroid were first done. Perhaps it was just an old age MOT or maybe because their nurse mis-diagnosed thrombosis in my leg for arthritis and it was only my breast consultant who raised the alarm for immediate tests to be carried out for thrombosis. Anyway, that is another story and from the attached blood tests results (many of which I do not understand) it appears a full MOT has been carried out. Although the blood tests do not show the Trab results, the Endocrinologist has referred to them as being negative 0.43 (but I have no information as to the lab range) In view of this, it appears Graves disease is not an issue at present, but I presume it should continue to be tested in future blood tests? I did see the scan of my thyroid showing the nodules just on the right side, but I do not know their size although they appeared to be multi. If treatment is necessary, I am hoping maybe, sometime in the near future radio frequency ablation may be offered locally, or at UCL as my daughter works within one of the departments there (although has no connection with rfa). As my Vitamin D is low, another test for this is being requested together with a bone scan, as I have noticed my legs are bowing, my height is shortening, and I had a fall some years back resulting in a fractured wrist. Thanks again to everyone who has commented , this truly is a very interesting and useful site.

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Jaydee1507 profile image
Jaydee1507Administrator

You can upload further results by replying to yourself on this thread. You can only upload one photo per reply so you will need to do that twice. Just hit the image icon middle of reply box.

pennyannie profile image
pennyannie

Hello again ;

Considering the most recent research is suggesting that the AT drug a safe option irrespective of length of time on it - rather than RAI - I'd be inclined to ignore this endo's parting comments -

and/or

ask him for the research papers in favour of his comments -

and/or

counter offering him copies of the 2 links I sent you previously :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

There is an alternative AT drug - Propylthiouracil - PTU for short - it is an ' older ' drug but well used when Carbimazole isn't tolerated or the patient is pregnant.

yvonne99 profile image
yvonne99 in reply topennyannie

Thanks pennyannie I will send the Endo the 2 links given. As my TRAb is negative, although I have not been diagnosed with Graves at present this is something my Doctor is concerned about but is prepared to take my approach of wait and see and do further tests in 6 months time to see if there is any change.

pennyannie profile image
pennyannie in reply toyvonne99

Ok then - good idea:

SlowDragon profile image
SlowDragonAdministrator

No folate, ferritin or B12 test results

cholesterol is high …..but when hyperthyroid cholesterol is normally low

suggest you get FULL Thyroid testing including both TPO and TG antibodies for autoimmune HYPOthyroid…..also called Hashimoto’s

Hashimoto’s frequently starts with temporary slightly hyperthyroid results …..before changing to hypothyroid as thyroid becomes more destroyed

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Low vitamin levels are much more common as we get older

all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test folate, ferritin and B12 then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

yvonne99 profile image
yvonne99 in reply toSlowDragon

Thank you Slow Dragon. It appears some of my blood test results did not come through. If I am right in thinking B12 is measured by the red blood cekk count this is 4.65 10*12L (range 3.90-50010*12/L - See Full blood count on attached page 3. serium ferritin result with others shown as normal sown on attached page 3 which I will try and submit

Blood Test Page 3
SlowDragon profile image
SlowDragonAdministrator in reply toyvonne99

There’s no ferritin result there ….or folate or B12

SlowDragon profile image
SlowDragonAdministrator

Vitamin D is one point off being deficient

NHS Guidelines on dose vitamin D required

A loading dose of 300,000iu in total over 6-8 weeks

That’s 5000iu per day for 8 weeks

Or 7000iu per day for 6 weeks

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

meme profile image
meme

did you have calcium and PTH tested along with vit D?

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