help with interpreting results

[s-bailey]

Hi,

I have just come from an appt. with a locum GP. Had total thyroidectomy in Jan 2017, before that was hyperthyroid on carbimazole and had nodule that FNA could not determine. As a result 9 months later surgeon removed thyroid, biopsy no cancer just very inflamed. Put on levothyroxine 125mg per day. Symptoms now, gained over 1 stone in weight despite some days I don't eat, headaches and brain fog, hair falling, nails breaking, pain in knees, ankles and carpal tunnel syndrome. Chronic headaches and fatigue. Never feel rested and struggle to sleep due to inability to regulate body temperature and aching bones/muscles. Can no longer exercise and having to take anti histamines and sinutab daily due to unexplained skin rash, blocked and painful sinus problems, runny/itchy ears, constipated and indigestion. Endo and doctor not sympathetic. Never had vitamin/mineral tests done but insisted today and have an appointment in a weeks time with surgery practice nurse. Results from hospital tests I cannot get as will not give over phone and don't have another appt. as yet. locum doctor looked up results on line as follows TSH 0.07, Free T4 26.5, t3 5.8 and cortisol sanacthen test 1.61 -802 but would not print them. Endo wants to reduce levothyroxine but my symptoms are indicative of being hypothyroid so surely to reduce even further when I don't have a thyroid would make me worse, please help to interpret blood results and suggestions of what I can do now.

[SlowDragon Administrator]

There are no ranges on those results, but FT4 looks pretty high.

If you have low vitamins then you can't use your thyroid hormones. Tests appear hyper, you remain hypo

Are they testing vitamin D, folate, ferritin and B12. Make sure to get actual figures and ranges.

Sounds like low vitamin D at very least.

Have you ever had thyroid antibodies tested if not ask they are done too

Any thyroid blood test should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after

You may have a problem with reverse T3, but NHS doesn't ever test for it. You would have do via Medichecks or Blue Horizon

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

As you have no thyroid T3/T4 combination may be required.

[s-bailey in reply to SlowDragon]

Many thanks for your reply the ranges are as follows;

TSH 0.07 (0.27 - 4.2)

Free T4 26.5 (12 - 22)

T3 5.8 (not sure if the range is 31 - 68 or 3.1 - 6.8)

Cortisol test 1.61 - 802

Regards

Sheree

[SlowDragon Administrator in reply to s-bailey]

Yes so FT4 is over range.

I felt absolutely rubbish and exhausted with very similar results 3 years ago. Since then I reduced dose 25mcg, improved vitamins, went gluten free, daily probiotic, and recently started T3/T4. Improving with each step. I have Hashimoto's

I don't understand the cortisol result - assume was done early morning?

Adrenal function saliva test might tell you more about your diurnal variation - but NHS don't offer it as test or recognise the results

Wait and review once you get vitamin test results

[s-bailey in reply to SlowDragon]

Many thanks Slow Dragon, actually the cortisol test was done in the afternoon. I do take vit D, selenium, vit c and zinc, b12 to try and help with symptoms and also try to be gluten free but still feel terrible. As I live in Northern Ireland its hard to get private bloods done at a competitive rate as companies like Blue Horizon insist that you pay your own courier for next day delivery and this makes it very expensive. I have been off work now for over 1 year due to thyroid problems and no longer receive pay so that option is kind of not an option for me.

[SlowDragon Administrator in reply to s-bailey]

Vitamin D test via vitamindtest.org.uk is £28 and not time sensitive ......but your GP should be testing.

How much vitamin D do you take? Was it tested first, or since supplementing.

Magnesium as well may be good idea as it's cofactor of vitamin D (calm vitality magnesium powder is cheap and last ages)

B complex recommended if taking B12 to keep all the B's in balance. But remember to stop any supplements with biotin in (most B complex) 4-5 days before any thyroid or B12 test.

endocrinenews.endocrine.org...

Do you always have same brand of levo? You might be allergic to fillers (acacia powder in some brands)

You might find this interesting

drgominak.com/sleep/vitamin...

[s-bailey in reply to SlowDragon]

Many thanks again for your reply. I have never had vit D tested but after reading some feeds on her thought I may be lacking so started taking 1 x 12.5 tab per day. Already taking B Complex but will also get magnesium. Regarding the levothyroxine, I always get from the same chemist and just checked the ingredients, yes it does contain arcacia powder. How do I ensure that future prescriptions don not contain this, is it just a case of going to a different chemist? Just had a conversation with the junior doctor who works with my consultant and she says that I should reduce the dosage of levothyroxine, when I asked about alternative treatment such as Armour or T3 she said that the 'Endocrine Society' does not recommend them and therefore she will not consider them. When I advised her that some Endos are prescribing them she said that I am free to get another endo...not really a satisfactory answer as they are in limited supply in Northern Ireland..Really at my wits end and every conversation with a doctor just makes me feel worse.

[greygoose]

You do need your levo reducing, but you need some T3 in its place. Having high FT4 like that will lead to high rT3, which will block T3 receptors, so that even though you have a decent level of FT3, you are still hypo. That's why you still have symptoms. But, getting your doctor to understand that will be difficult to say the least! They know so little about thyroid.

Just testing the cortisol once, in the afternoon, is less than useless. What you really need is a 24 hour saliva test, but the NHS doesn't do that. But, if it's got to be a blood test, it should be done round 8 am, because that's when your cortisol needs to be highest. But, that's another thing that doctors fail to understand.

No point in testing for antibodies, because you don't have a thyroid!

[s-bailey in reply to greygoose]

could someone pm me where I can get T3 from please

[Jazzw]

Had you taken your levothyroxine on the day of the test? If so, how long before the test?

[s-bailey in reply to Jazzw]

Hi

No I didn't take it before I had the test, I waited until afterwards.

[greygoose in reply to s-bailey]

I think you'll have to post a new question, asking just that. Nobody much is going to see this request here, now. The post is too far down the list.

[s-bailey in reply to greygoose]

THANK YOU

[greygoose in reply to s-bailey]

You're welcome.

[SlowDragon Administrator]

Also put new post requesting info on acacia free Levo

Louise at Thyroid Uk has list of recommended thyroid specialists - might be some in N Ireland

Agree with greygoose re cortisol and Rt3 - NHS will completely ignore both

[s-bailey in reply to SlowDragon]

many thanks for your reply, have checked the list and no consultants in Northern Ireland only in the South