I could literally scream or cry 😭 : So history... - Thyroid UK

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I could literally scream or cry 😭

Blister4 profile image
Blister4
•13 Replies

So history of Hashimoto and all the symptoms of being hypo and struggling to work!

Dr appt today to ask for endo referral. He suggested I didn’t have Hashimoto as my TSH was normal. Antibodies don’t mean you have it apparently. Tried to suggest I had fibromyalgia. Was told that the endo won’t see me as I don’t have Hashimotos as my TSH and all other bloods are normal! My anti thyroglobulin was 229.8. Been loads better since removing gluten.

Am I going mad 😡. I’m at my wits end and just want to admit defeat.

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Blister4
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SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

Can you add actual results and ranges for vitamin D, folate, ferritin and B12

Looks like central hypothyroidism and Hashimoto's

This research clearly shows high TG antibodies cause symptoms

ncbi.nlm.nih.gov/pubmed/303...

Suggest you print this out take to GP and request Thyroid ultrasound scan

healthline.com/health/antit...

Ever had blow to the head, whiplash or heavy blood loss after giving birth (Sheehan syndrome)

Email Dionne at Thyroid Uk for list of recommended thyroid specialists......who might agree you need to be started on Levothyroxine

Blister4 profile image
Blister4 in reply to SlowDragon

I can’t seam to take a photo so here’s the info

B12 1263 Range 160-1000

Serum folate 10. Range 3.0-20

Ferritin 41. Range 10-291

Vit D 87 above 50 is sufficient it says

I’m taking supplements for all the above.

Thanks for the info I will print it out and go do battle x

SlowDragon profile image
SlowDragonAdministrator in reply to Blister4

Ferritin is on low side

All others ok

Ferritin aiming for at least over 70

Eating iron rich foods eg liver or liver pate once a week

Daily vitamin C can help improve iron absorption

Cooper27 profile image
Cooper27

I'm like you, had high antibodies and similar TSH/T4 readings. My GP was new to it all, so referred me on to an endo, because she didn't know what it meant. The endo knocked it back, because there was nothing they could do to treat me at that time, and I think even if your GP had refered you, you would have had the same response.

I feel so much better since working through Izabella Wentz's Hahimotos Protocol - antibodies back in normal ranges again, and I can function like a regular person :) It's not to say they won't flare, or that I won't eventually be hypo some day, but for now I feel good!

Blister4 profile image
Blister4 in reply to Cooper27

Hi cooper

thanks for sharing your story. I’m sorry you’ve been through it too but feel a tad better knowing it’s not just me!

I’ll take a look at Isabella Wentz, I think I’ve read some of her info.

Gluten free has helped enormously

Onwards and upwards x

Cooper27 profile image
Cooper27 in reply to Blister4

Unfortunately I was gluten free before I first had my antibodies tested, I'm sort of sad I don't know where my antibodies were before that! But gluten free seems to help 75% with Hashimotos.

Just so you're not confused by your GP, you do have Hashimotos - Hashimotos comes before the thyroid even starts to fail, it's just that GPs only test for it AFTER they've diagnosed hypo and your thyroid has gone.

I always explain it to doctors that I have antibodies, and will eventually end up hypo but my levels are "normal" for now, and they don't say another word...

Sleepybunny profile image
Sleepybunny

Hi,

If you're in UK, I wondered if HDA patient care trust might be able to help.

hdapatientcaretrust.com/

They are a UK charity that can offer (usually) free appointments with doctors for a second opinion.

B12 1263 Range 160-1000

Do you supplement with B12 as I note your B12 is above range?

If you are having B12 injections or supplementing B12 due to a previous diagnosis of B12 deficiency then there is a lot of information about B12 deficiency on Pernicious Anaemia Society forum on HU.

Link about B12 and folate tests

labtestsonline.org.uk/tests...

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Blister4 profile image
Blister4

Hi sleepybunny

Yes I do supplement with b12, sublingual.

I’ll take a look at the info thankyou and as I’m in the uk the charity link too. I’ve not heard of that charity and every opportunity is worth a try.

Thankyou x

That is a low t4. Is it t4 or ft4? I would not say this is 100% Central hypo, I have seen labs like this where someone's ft4 is low, but ft3 is high and that brings the tsh down, however, you still may not feel great! You definitely need ft3 tested.

Have you ever had a thyroid scan? I would go for one as that would most certainly confirm if you have Hashi or not, however antibodies elevated like this - it's not just slightly over ..it is true that antibodies can be mildly elevated without Hashis, but not at this level!

Blister4 profile image
Blister4

Hi cupofcha

It’s was free T4 and my ft3 is 4.6 range 3.1-6.0.

Do you mind explaining how a scan can diagnose Hashimoto please? So I can back myself up with knowledge when that question why I want a scan!

SlowDragon profile image
SlowDragonAdministrator in reply to Blister4

Definitely request ultrasound scan

Negative TPO antibodies doesn't exclude Hashimoto's

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

What are your symptoms Blister?

Of course - the surface of thyroid changes when you have Hashimotos, mine looks a bit like Swiss cheese, you can also see increased blood flows. Healthy gland is smooth and has a thyroid shape. Sometimes you can also see the gland being enlarged, with nodules or shrinking even & that's not good !

I am stunned how nobody checks it. In Poland you go to your Endo and he does it at each appointment to see how your gland is doing!

Blister4 profile image
Blister4

Wow now that’s excellent care.

Symptoms, exhausted fatigue, no stamina, joint pain and boney nodules, dry mouth and eyes, anxiety, poor cognitive function, hoarse voice, poor sleep, pmt, weight gain. Those are what I can think off, I’m struggling to work and live a good normal life right now!

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