What tests?

[lesbud1]

Hi could anyone give me advice please. I was treated for an overactive thyroid with radiotherapy and carbimazole many years ago, after which I took thyroxine until I had a reaction to it. I was told by my then GP that my levels were normal and it was stopped. I was also told that my antibodies were extremely high but I do not remember what antibodies. I had my TSH levels done recently which came back normal 3.37mu/L but I did not have T4 or T3 taken. Can anyone advise me if I should be asking for other tests for thyroid function not just the TSH? thanks.

[SlowDragon Administrator]

Usually after RAI to knock out Thyroid Levothyroxine would be for life

Obviously test results look "normal " on Levothyroxine....that's the idea...doesn't mean Levothyroxine should be stopped

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have offer on £79 instead of £99

[greygoose]

A TSH of 3.37 is not 'normal'. It is hypo. You do need other tests done, and you should be taking some form of thyroid hormone replacement. What sort of reaction did you have to levo?

The antibodies for Grave's are TRAB or TSI.

The antibodies for Hashi's are TPOab and TgAB.

The problem is, most doctors don't know the difference.

Was it an endo that tested your antibodies? Or was it your GP?

[lesbud1 in reply to greygoose]

Hi thanks. I remember my GP telling me about the very high antibodies but if that was from the hospital or him I really don't remember it was possibly 16yrs ago. I sometimes look at my face/neck and think it looks like a goitre but I could just be imagining that. I will ask the doc to check next visit. I have just sent off for some private bloods so will get those done asap. I had very high blood pressure and headache, feeling awful and protein in my urine. I also got this with same antibiotics, tken long term for acne years ago. It does seem strange that my GP took me off levo and I never had any tests done after that, now I think about it. My mother has hypothyroidism too.

[greygoose in reply to lesbud1]

Your GP obviously doesn't know much about thyroid. Not many of them do.

[SlowDragon Administrator]

see on PA post you are diagnosed as folate deficient

Common to have very low folate, B12, ferritin and vitamin D when hypothyroid

When hypothyroid gut absorption can be affected leading to low vitamin levels, especially with Hashimoto's (high TPO and/or high TG antibodies)

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be more beneficial than just folic acid

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

B12, MMA and homocysteine testing

nutris.viapath.co.uk/pages/...

Just Vitamin D test £29

vitamindtest.org.uk

[lesbud1 in reply to SlowDragon]

thank you for your time and all this info. I have B12 injection 8 weekly, although the new GP says I don't meet the criteria for this as I was neg to IF antibodies about 9yrs ago when I was diagnosed. she intends to contact the gastro consultant that diagnosed me who also wrote in a letter that my deficiency was probably due to PA. anyway I had bloods done recently and my folate was 3.8 and the lab report said please commence folic acid but she ignored this. when I rang for the results they told me everything was normal. it was only when I asked for a copy that I saw I was slightly deficient. I intend to ask her why she thinks I am deficient in folate as I am not vege or vegan, malnourished or drink alcohol accept with my Christmas dinner! I am not sure if my B12 injection I had 3 weeks ago with interfere with the bloods I am going to have? the only other thing was my plasma viscosity was above range 1.76mPa.s (1.5-1.72) it goes on to say high results found in many chronic disorders eg infection, malignancy, autoimmune rheumatic disease, and my basophil count was below reference limit 0.00 10*9/L (0.2-0.1) serum cholesterol was 8.3mmol/L which says above high ref limit. random sample. I will ask her about all of these to see what she thinks it may mean.

[SlowDragon Administrator in reply to lesbud1]

High cholesterol is linked to being hypothyroid

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Vitamin D, folate, B12 and ferritin are all frequently too low when hypothyroid. Being hypothyroid nearly always affects gut function and results in low vitamins (regardless of how good your diet is)

So you already know you have high cholesterol, deficiency in B12 and folate

Ferritin and vitamin D need testing

You could just order Thyroid plus test - £47

medichecks.com/thyroid-func...

And separate vitamin D test £29

But that won't include ferritin testing

But better option is to order thyroid plus vitamins with thyroid plus ultra vitamin test £79

medichecks.com/thyroid-func...

[lesbud1 in reply to SlowDragon]

thanks so much. have ordered the medicheck ultravit so just need to get it done asap. thanks again

[SlowDragon Administrator in reply to lesbud1]

Make sure to do test only on a Monday, Tuesday or Wednesday as early as possible in morning and fasting and last Levothyroxine dose 24 hours before blood test

Post kit off straight away. Results emailed to you 2-3 days later

Stop any supplements that contain biotin a week before any blood tests as biotin can falsely affect test results

As you have B12 injections, perhaps do test about a week before next B12 injection is due

[pennyannie]

I too had RAI back in 2005 for Graves Disease.

I have been very ill these past years with the consequences of drinking RAI, but have received no help, acknowledgement or understanding from the NHS. I have been on a NHS roundabout for over two years and feel totally disappointed, my last appointment being with endocrinology and a refusal for a trial of T3 because of my suppressed TSH.

I am now self medicating, buying my own thyroid hormone replacement and getting my life back

You might like take a look into the following :-

Elaine Moore had RAI and found no help with her ongoing symptoms so wrote a book to help other people in the same situation. Graves Disease A Practical Guide is the title. She now has a very well researched and respected website, much like this amazing site with open forums for people to learn, empower, share and support each.

Tired Thyroid by Barbara S Lougheed is another American lady who went through RAI - she now runs a blog under the same name, and debunks, in great detail, the over reliance placed on the TSH reading. It s essential that you are monitored on T3 + T4 blood test readings. You have drunk RAI, your feedback is broken, and your TSH blood test, looked at in isolation, means diddly squat.

Your Thyroid and How to Keep it Healthy is written by a doctor who has hypothyroidism.

Dr Barry Durrant - Peatfield writes a easy read, a sometimes funny take, on all things thyroid, and since we don't now have this major gland to regulate our metabolism and internal central heating system, we need to know how to compensate where we can. The thyroid is the conductor of your body's orchestra, including your mental, physical, emotional, psychological and spiritual wellbeing, and when this vital gland isn't there, having been ablated with RAI, we needs to know what to do to repair the damage we may have had caused.

If your thyroid was ablated I would think you need to be on Levothyroxine for life and the TSH you have shows that you are hypothyroid which is what RAI treatment generally results in.

Levothyroxine needs to be at a level to reduce down the TSH but more importantly you need to see where your T3 and T4 blood tests levels are within their ranges. As previous detailed a full thyroid panel needs to be undertaken along with the vitamins and minerals to enable people better able than me to advise of your next steps.

[lesbud1]

thank you for all those reference. I will start to read about it. I have paid for bloods with medicheck ultravit so hopefully this will give me a better picture of what might be going on.

[pennyannie in reply to lesbud1]

Excellent, when with the results and ranges start a new post to include all this information and you'll have everything explained to you, to enable you to take back some control and get some QOL.