Should I have my own antibodies tests done while I wait for my endo appointment?

[rowanbovis]

Hello. My endocrinologist simply didn't turn up for my telephone appointment on Wednesday. My next window of opportunity is 19th May - also over the phone.

So, tests-wise, these are still my only results from blood taken 9th April:

TSH <0.05 [0.3-5.5] pmol

T4 34.7 [12-22]

T3 14.8 [3.1 - 6]

I am still feeling cold then monstrously hot, exhausted, weak, achey, I have gritty eyes (as if they are full of cat hairs and sand) and am pooing a lot. Cheekbones like geometry, fingernails like corduroy. I feel like a Slinky toy walking down the stairs, have a kind of inner tremble throughout my body. Itchiness is a little better, heart still racing.

To try and remedy my state, I have gone gluten and dairy free, and am taking Acetly-L-Carnitine, ferrous sulphate, folate, B12, D, B6, A, C, Selenium and lots of fish oil. I have some eyedrops.

So I'm thinking of doing a Medichecks or similar test to see if I have antibodies for either Graves or Hashimotos, while I wait for the endo appointment. Is this a good idea? I am getting used to the symptoms but not knowing why this is happening and what direction it will take is scary.

[SlowDragon Administrator]

Yes definitely if you can afford to

The Medichecks test for Graves antibodies requires private blood draw

Always test as early as possible in morning before eating or drinking anything other than water

Important to test vitamin D, folate, ferritin and B12 too

What vitamin supplements are you currently taking

What has GP prescribed for high thyroid levels?

[rowanbovis in reply to SlowDragon]

Thank you, Slowdragon. The vitamins I am taking are above (plus zinc and a probiotic). The GP offered beta blockers but I didn't get on with them years ago when i took them for migraines, so I said no thankyou. I was hoping the fish oil would bring my heart rate down but it went up to 130 today, just rearranging some books!

I've ordered Medichecks Advanced Thyroid Function Blood Test - they say it's only the folate which requires a syringe full of blood.

Do you think I should stop taking my iron and B12 and other vitamins before the test? This test includes an iron status and vitamins test.

[SlowDragon Administrator in reply to rowanbovis]

If wanting an accurate ferritin result, yes stop iron supplements a week before test

Stop taking any supplements that contain biotin a week before all blood tests

[rowanbovis in reply to SlowDragon]

Thanks, I stopped taking my B Complex last week.

[Buddy195 Administrator]

I do this privately via Medichecks as it costs a lot more to do this at a private hospital & wait for results is the same.

[LAHs]

You don't say which medications you are taking. Your T3 is way too high and such a level accounts for all of the symptoms you are describing. If you are not on any medication it looks like you have Graves disease, i.e. a hyperactive thyroid. Let us know whether your condition is just as you are or is it being driven by thyroid meds (and too much of them!).

I would suggest you drop the Selenium supplement right away since this will generate T3 from your existing T4. You do not want to generate more T3 in your current condition.

[rowanbovis in reply to LAHs]

Thank you LAHs, I'm not on any thyroid medication yet - I had a blood test for my lithium levels (a medicine for bi-polar); I asked specifically for TFT, and this was my result. Amazingly, I had the test on a Friday, and the surgery rang me on Monday morning to come in for a face-to-face examination with a GP. He then referred me to Endocrinology.

Thank you very much for the selenium advice.

[pennyannie]

Hello Rowanbovis ;

When these " hyper type phases " have happened before were you ever medicated with any Anti Thyroid drugs - like Carbimazole or Propylthiouracil - PTU - for short :

I'm out of my depth, but would think this a first step and to just block your thyroid hormones building any higher and this is what happens if the medical profession suspect Graves, even before they have the medical evidence of positive and over range antibodies.

Or do these " phases " pass over a period of time without any additional medical intervention - which then suggests Hashimoto's auto immune thyroid disease.

Obviously identifying which AI thyroid disease you maybe dealing with is essential and the specific antibodies unique to Graves Disease are expressed as either a TSI ( worded as a thyroid stimulating ) and or a TR ab ( worded as a thyroid receptor blocking ) antibody :

So yes, you can see with Graves you can also have Blocking and Stimulating antibodies - like a tug of war - causing a multitude of varying symptoms.

There is known research on the link between thyroid and bi-polar, it's not uncharted territory and am just concerned your telephone appointment didn't happen and you have been left with unresolved issues, which in itself causes more anxiety and stress than you need.

Could your doctor put any pressure on from his/her end and at least take the blood draw to analyse which antibodies are over range :

I only had one blood test at the surgery back in 2004 which was analysed at the hospital laboratory and within a few days I was diagnosed with Graves Disease and put on AT medication before I even got to see anybody at the hospital, as Graves is said to be life threatening if not medicated.

Which makes me presume, you maybe looking at Hashimoto's rather than Graves :

[rowanbovis in reply to pennyannie]

Hi Pennyannie, Thank you for remembering the bi-polarity. Yes each episode over the years has so far been transient. The worst one was in 2014 when I slipped down to 6st 12 and was raging. I did have an ultrasound then which showed that my thyroid was inflamed. I presume my GP decided to watch and wait. I distinctly remember him saying "We're not worried about your thyroid now" at yet another appointment I'd made because I felt so dreadful.

The trouble with having a mental disorder on your notes is that it blinds GPs to anything nice and clean and bodily going on despite the tons of research linking lithium and thyroid.

(As if the mind isn't part of the body!!)

I hope your instant diagnosis was correct?

So as my next telephone appointment isn't until the 19th, I have ordered a Medichecks test which includes antibodies. It arrived this morning and I will do it tomorrow morning after a sip of water.

Lithium is renowned for interfering with thyroid function but also, people with bi-polar are, apparently prone to thyroid disease, and some researchers speculate it works both ways - that auto-immune disease in some form comes first. Then there's the infection theory, particularly Glandular Fever and Herpes virus various.

I shall report back with my results.

[pennyannie in reply to rowanbovis]

Yes, I have read similar and the information is out there, if one chooses to read and be informed, which as medical professional one would have thought a " given " :

Trust me, you don't need to have anything on your records to be labelled : -

Just questioning my medication gave me an additional prescription of an antidepressant rather than running any T3 and T4 bloods.

If this were me, sensing my lack of knowledge, I'd make a point of reading and researching so to better serve my patient, but there you go:

I worked in retail, and it was my job to learn of what I was selling and would have been sacked had I not bothered to do the homework irrespective of the wage earned.

It's quite alarming and it seems the computer dogma doesn't join up the dots or colour in the person and we're seen as bits and pieces, and not the sum total of the parts.