First test results - Any advice?

[ScarletWoodland]

Hiya, some of you may have read my first post but to recap:

Have been experiencing extensive hypothyroid symptoms plus ataxia like symptoms including numbness, pins and needles, poor hand co-ordination, poor balance, brain fog and my eyesight is diminishing quite rapidly, with frequent blurring and double vision (particularly in the evening).

After many attempts I managed to get a doctor on the phone for a whole 2mins and 33secs. Told him the above & he asked what I did for a living, why my medical record was blank for the last 5 years (I thought I was "fine") and checked that I meant what I meant by ataxia. He said reception would ring back to book a blood test but offered no face to face appointment and that was that.

My test results have come in and the only note left with the results team was for me to ring and book a repeat thyroid test in 3 months as it's borderline. No suggestion of ever having a face to face appointment where they might ask about my thyroid symptoms or take a family medical history.

After some wrangling I managed to get a print out of my test results and would really appreciate you guys taking a look:

TSH - 6.61 (0.3 - 5.0)

T4 - 20.7 (12 - 22)

B-12 - 270 (200 - 960)

Ferritin - 40 (15 - 350)

Folate - 4.7 (3 - 18)

My liver function, kidney function and blood sugar all look good, which is a lovely surprise with my family's medical history, and the calcium serum, cholesterol and electrolyte levels all look fine (perhaps a touch dehydrated).

The blood panel is quite interesting. Everything in range but:

White Cell Count - 4.7 (4 - 11)

and the various elements that (from my googling) can indicate anemia were near the bottom of the normal range.

Vit D, T3 and antibodies weren't tested, unsurprisingly, though the notes beside TSH do suggest testing antibodies next time. Just give me a poke if you'd like the result figures on any of the tests I haven't listed them for.

I guess my main question is, are my dismal B-12, Ferritin and Folate levels bad enough to be causing the ataxia stuff and making my hypo stuff so pronounced? Would actually be really reassuring if they were, as it would make a lot of it reversible and self treatable, without banging my head against the GP brick wall.

Would love some advice on supplementing too, in terms of dosages and correct forms of supplement. Have ordered things from pipingrock before with success, so that's probably where I'll be looking first.

Thank you so much for reading my waffle and I appreciate any insight or advice you can give.

Scarlet

Edit: Oh, and if it makes a diff I'm a wee, 116lb person with pretty low blood pressure so my blood volume will be quite low compared to average. I'm not veggie or vegan and though my diet is restricted in quantity (gotta love that slow metabolism) , it's very healthy balance wise.

[ScarletWoodland]

Ugh, woke up dizzy with a headache today. Just what I needed to think clearly.

Can't decide if it's practical, or lazy and defeatist to try self treating the B-12, ferritin and folate up myself... instead of somehow summoning the energy to fight with a doctor's surgery that don't want to know.

[greygoose in reply to ScarletWoodland]

Your doctor would probably say they're 'fine' and refuse to treat, anyway. Self-treating has nothing to do with being lazy or defeatist, it's self-preservation!

But, yes, your B12 level is low enough to be causing your ataxia and much, much more.

Your TSH is much too high, and you are overtly hypo, according to that - even though your FT4 is quite high, your FT3 is more than likely very low - conversion problem. However, it's not just low T3 that can cause a TSH to be high, so the protocol is to do a second test, some months later, to make sure it wasn't just an infection causing the high TSH. But, it would be a very good idea if they did the antibodies next time!

[ScarletWoodland in reply to greygoose]

That's really really helpful thank you.

Will get on the supplement train and see if I can get the ataxia under control by their next test.

Will prob do a thyroid check ultra vit privately after a couple months to see how I'm doing on that front, and find out if it looks like a conversion issue (suspected this too when my T4 was so high).

Would be very surprised if antibodies come back clear as looking back, have definitely swung hyper in the past.

Thank you!

Scarlet

[greygoose in reply to ScarletWoodland]

You're welcome.

For B12 you really ought to be tested for Pernicious Anemia, at this poing, but if your doctor isn't interested, there's no much you can do. I don't know if you can do that privately. But, if you can, you should get it tested before you start B12 supplementation.

[ScarletWoodland in reply to greygoose]

That's a good point. The only comprehensive one I can find costs an absolute bomb but can get the right antibodies checked for £69. Hmm.

Will ring and make a fuss on Monday on the offchance they're willing to do it for me. Possible they might consider it a cheap way to make me go away 😁

[ScarletWoodland in reply to ScarletWoodland]

Finally got in to see a doc in person and I'm pretty sure she thinks I'm nuts 😁.

Wouldn't entertain the thought of a B-12 deficiency for even a split second, so I'm on my own there. She did immediately agree that I'm hypo though so has prescribed a 25mcg trial dose of levo. Not enough for a gnat but it's a start at least.

She's going to call me in 2 weeks to see how I'm doing on them, then re-do the thyroid test and check antibodies 6 weeks after that.

Showing her my family history of autoimmune made a big diff and I'm having an autoimmune profile done on Thursday. Had better have a non stop gluten party till then to make sure it's accurate.

She said my symptoms screamed Fibromyalgia too but didn't want to "diagnose" me as that yet, as it's not a helpful diagnosis and can discourage further investigation. I'm inclined to agree with her there.

So yeah, pretty sure she thinks I'm a crazy hypochondriac and was fairly patronising, but at least she agrees there's genuinely something wrong.