Please help me understand - am I hyper or not?

[4872angie]

I’m losing the will to live as I’ve managed to draft two posts and deleted them both by accident! 😖

My reason for posting again so soon is my utter confusion over my recent ‘normal’ results.

I went back to the beginning when I first complained to my GP of a fast and erratic heart beat. Coronary issues ruled out he tested my thyroid function and referred me to an endocrinologist.

Aug 17

TSH <0.02 (0.2 - 4.5)

FT4 19 (9 - 24)

Antibodies test (no data sorry) was negative.

Did not test T3.

Sep 17 - saw Endo who gave me a physical exam of my thyroid/throat, explained that he believes it’s Graves despite negative ab result and prescribes carbimazole and propanalol.

He stated that when compared to a previous test done 2 yrs prior my Levels weren’t high enough. I was ignorant enough to leave it at that.

Over the next few months symptoms appeared that were more hypo than hyper and the carbimazole was making me disfunctional. I reduced then stopped.

I was still a bit tachycardic but also was gaining weight (he said it was because I was eating too much! Despite my decreased appetite). I also suffered thinning hair, severe headaches, muscle weakness and cramps, hideous mood swings, irregular menstruation, brain fogs, tinnitus and general flu like symptoms. Nasty

May 18

TSH 0.02 (0.2 - 4.5

FT4 13.5 (9 - 24)

July 18

TSH 0.07 (0.2 - 4.5)

FT4 12.5

Aug 18

TSH 0.24 (0.2 - 4.5)

FT4 12.9 (9 - 24)

Weight gain in 1 month of a stone despite eating less and exercising more. BP increased.

16 Aug 18 Medicheck Thyroid plus Vits

TSH 0.355 (0.27 - 4.20)

FT4 14.7 (12 - 22)

FT3 3.96 (3.10 - 6.80)

Thyroglobulin Antibody <10 (0.00 - 115)

Thyroid Peroxidase Antibodies 19.4 (0.00 - 34)

Active B12 66.6 (25.10 - 165)

Serum Folate 2.29 (2.91 -50)

CRP - High Sensitivity 0.25 (0.00 - 5.00)

Ferritin 57.6 (13 - 150)

My next Endo appt is in a couple of weeks and I don’t know what’s going on. Do I have a thyroid issue? Am I (was I ever hyper)? Should I have stopped carbimazole? My T4and T3 are lower range is that enough to be symptomatic? Am I going mad? What do I need from my Endo? Do the antibody tests just check for Hashimoto’s or have I been tested for Graves too?

I’ve never been tested for vit d and my GP won’t see me until I’ve seen the Endo.

I’m very confused and all of the literature and links I’ve seen confuse me more. I have zero attention span not for the lack of trying).

Can anyone help?

[SlowDragon Ambassador]

This test does not include the TSI or TRab antibodies that would confirm or deny Graves

For Graves antibodies you need this test

medichecks.com/thyroid-func...

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Vitamin D you can get tested for £29 via NHS postal kit

vitamindtest.org.uk

The test results you have had

TSH is still low

But both FT4 and FT3 are also low

Normally with low FT3 or FT4, TSH rises.

Your antibodies are not above range. So not conclusive. But not everyone with Hashimoto's has raised antibodies.

thyroidpharmacist.com/artic...

Push Endocrinologist to do an ultrasound of your thyroid. If you do have Hashimoto's thyroud would appear granular

Folate is BELOW range. This needs supplementing. Endo or GP should prescribe. Alternatively you could start self supplementing with a good quality daily vitamin B complex. One with folate in not folic acid

B12 is on low side. Vitamin B complex will help improve this

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Ferritin is OK, but you wouldn't want it to drop any futher

Important to test vitamin D

[4872angie in reply to SlowDragon]

Thank you for your help. It’s a bit clearer now. So I’m being a bit dense I know but am I still considered overactive?

I will sort out the additional tests now that I understand - I mistakenly thought the two antibody tests with Medicheck tested for both Graves and Hashimoto’s. Obviously I got that wrong.

I do apologise for having to have this explained to me again. I just couldn’t get my head around it

[SlowDragon Ambassador in reply to 4872angie]

Don't worry

It's complex.

Your endocrinologist should have tested for TSI antibodies. But we see many people on here where they just assume with low TSH that you are hyper

But with low FT4 and FT3 now, your results suggest hypo - despite low TSH

Have you ever had head injury, whiplash?

[4872angie in reply to SlowDragon]

Yes, suffered from a severe concussion twice ( once as a child and once as an adult) and whiplash in an rta. What significance does head trauma have to thyroid?

[SlowDragon Ambassador in reply to 4872angie]

Your results suggest central hypothyroidism

This can be caused by head injury or whiplash

Central hypothyroidism

endocrinologyadvisor.com/en...

pituitary.org.uk/support-fo...

medscape.com/viewarticle/58...

edmcasereports.com/articles...

Whiplash

wellnessresources.com/news/...

You need referral to endocrinologist who specialises in pituitary and thyroid

[4872angie in reply to SlowDragon]

Thank you Slow Dragon - I will concentrate on these and try to understand.

(I’m a horse owner/rider and falls and spills have often caused some degree of trauma or injury in the past, including head and neck).

I was also injected for B12 deficiency and macronised red blood cells for about 20 years until last year (pre-endo) with symptoms not dissimilar to hypo. They finally sent me to a haematologist who said the problem wasn’t B12 - levels too high discounted malabsorption and bloods negative for intrinsic factor/PA. the haematologist sent me on the way with a diagnosis of CFS and depression (which I wasn’t).

Could this central thyroid issue potentially have been rumbling in the background without showing on any standard blood tests?

[SlowDragon Ambassador in reply to 4872angie]

I will add Marz in here as the B12 guru

If you were having B12 injections they almost certainly should not have been stopped

[SlowDragon Ambassador in reply to 4872angie]

How long before thyroid "problem " were B12 injections stopped?

Low B12 stops thyroid hormones working. So might account to why TSH was low

Essetial to do comprehensive B12 testing

Would recommend you do My B12+ test listed here

£105

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

Presumably you have not taken any B vitamins or B12 recently?

[4872angie in reply to SlowDragon]

There was a gap of around 6 or so month if I remember correctly. I had been having B12 injections every 12 weeks for about 20 years on and off. My red blood cells were always larger (macronised) and they suspected PA/malabsorption but could never determine the cause as Intrinsic Factor was always negative. Folate was treated as and when it dipped. However, when I was referred (finally) to the haematologist she ran a number of bloods (I’m fairly sure she tested vit d3 too) and claimed I was bordering on overdosing B12 (yes, seriously 🙄) as my levels had risen to >1000. I tried to explain that high levels were to be expected as I was a recipient of regular injections. She was having none of it and discharged me with Chronic Fatigue and depression (made me feel like a hypochondriac). Obviously, GP saw the report and refused all further treatment.

I have tried sublingual B12 complex etc and they don’t alter my levels and obv nor do B12 tablets. It has been about 18 mth - 2 years since then and my levels have continued to drop but have remained in range. They told me to eat more green leafy veg and sent me on my way.

I questioned my endocrinologist whether there was any evidence to suggest the B12 levels had had an impact on thyroid function and he looked at me like I was stupid! He said that B12 is concerned with blood and thyroid is hormones and they do not effect each other.

My most recent check shows that my B12 is below mid range and that’s the lowest it’s been in years and although the depletion of B12 has been relatively slow it has not stabilised. I am aware that the reference ranges for B12 are subjective and not unlike endocrinologists, haematologists do not treat until out of range.

Btw I am not a vegan and I have a normal healthy diet. I have never been able to sustain B12 levels through diet alone but all other investigations suggests that I don’t have autoimmune condition; not celiac etc. I also hardly every drink alcohol.

I’m 46 now and have spend many many years being sent down rabbit holes trying to determine what is causing my issues.

However, I do have pretty much all of the symptoms of hypothyroid. Of course, many of these are similar to B12 deficiency. Confused is an understatement.

[SlowDragon Ambassador in reply to 4872angie]

Good to see you are aware of the complexities

Testing MMA and/or homocysteine can reveal B12 issues

Using test of Homocysteine levels to check for low b12

b12-vitamin.com/homocysteine/

Good explanation on homocysteine

veganhealth.org/b12/hcy

Oral as good as injections

aafp.org/afp/2003/0301/p979...

B12 generally

drjockers.com/warning-signs...

Low stomach acid (common hypothyroid problem) can cause low B12

If you search low stomach acid on here you will see loads of posts

Low stomach acid is possibly even more under diagnosed than thyroid. Or misdiagnosed as high stomach acid - similar symptoms, but very different treatment

Thyroid issues and B12 issues often the cause is gut.

Many of us on here discover astonishingly that gluten intolerance is often a hidden problem despite no obvious gut symptoms

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

[Cat4health]

According to your tests you were never hyper. They should be testing ft3 every time-push them to add it- cos maybe that went up a bit but otherwise you would only ever have been sub-clinical. So no wonder the carbimazole made you hypo. How long have you been off the carbimazole?

[4872angie in reply to Cat4health]

Cat4health - I took the carbimazole for a few months at 20mg then dropped the dose, first to every other day then to 5mg then stopped altogether about Easter.

Been off it now for about 4-5 months now and the symptoms that I suspected were hypo have continued since. It has only been the last few months that I was worried it was going the wrong way and started googling (and found this site!).

I had hoped it would reverse once off the carbimazole but if I was never hyper I guess the symptoms would lessen rather than disappear?

[Cat4health in reply to 4872angie]

Thing is there is a difference between graves disease and hyperthyroidism. You're only hyper when you're levels are too high, which yours never were as far as the results show. Graves antibodies can cause a low tsh even when your levels are normal. I think you deserve a full antibody check from your endo. That'll give a better picture.

I'm so sorry that your hypo symptoms continue. I've been off carb for 2 months, as my levels got too low, n my levels are still low, so I know it's frustrating!!

[Angel_of_the_North]

Nothing to suggest overactive there - ever - not 2017, not in 2018. A beta blocker for the palpitations would probably have sorted it. Can only be Graves if you have positive TRab or TSI antibodies. Overactive is when free t4 and free t3 are over range. Looks more like central hypothyroidism (where the problem is with pituitary or hypothalamus so TSH never rises even though Free T4 and free T3 are very low in range). B12, folate and ferrtin are also dreadful,

[4872angie in reply to Angel_of_the_North]

Angel_of_the_North - thank you! I have struggled for so long to understand how to interpret these results. I have never had a positive antibody test and I don’t know if Graves antibodies were ever tested at all and it didn’t stop them diagnosing it!

I don’t get it ... how can the whole of the well paid and trusted medical profession get it so wrong and so often?! I don’t just mean their understanding of thyroid but in many fields (see my reply above re: B12) but even so far as their inability to interpret a blood result. Even the laboratory’s informing the GP’s in practice that patient results are all normal and no further action required - the lot of them astound me!