Strange results, nearly answers?!: Hey everybody... - Thyroid UK

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Strange results, nearly answers?!

Beckybexx
Beckybexx

Hey everybody, I’m back again with more results and more confusion!

My neck swelling and other pain symptoms have been getting worse, I’ve had loads more bloods for various things and after a definite positive ANA (autoimmune profile) have been told likely Lupus SLE so awaiting a rheumatology appointment.... however!!

I got my latest thyroid bloods today. For 20 years my tsh was relatively stable, hovering around 1, settled on 125mcg levo for the last 8 years. My results from this year as follows

Jan 0.56

April 1.14

May 0.98

then July 2.39! This seems like a leap!!

The GP refused for the second time today to consider that my thyroid is the problem. She flat out refused an ultrasound for my neck for the sensation of swelling and trouble swallowing, insisting I’m within range (0.35-4.94) so must be another reason for my aches, pains, restless legs, muscle twitching etc etc. My vitamin D was tested and now great for last 2 months at 129, B12 improved a lot, been carefully supplementing and these levels fine. Ferritin good, folate a touch low but mid range. Now GF and digestion is better but now constipated instead of the runs!!

My question really is am I taking an appropriate dose? Could this be some sort of thyroid flare? (Definitely Hashimoto, antibodies 154) What else can I try?? I’m now facing a wait until Jan 2019 for a rheumatology appointment that I don’t think I even need.

This is so frustrating, I’d really appreciate some guidance from wiser people than me, please help.

Becky x

7 Replies
oldestnewest

Are your tests always don't early morning and fasting?

2.39 is too high for someone on thyroid hormone replacement, and you do need an increase in dose. It could be the results of a Hashi's 'flare' (but not the 'flare' itself, which would suppress your TSH) because you now have less thyroid to produce hormone than you did before the 'flare'.

But, it's very wrong of your doctor to dose by the TSH.

SlowDragon
SlowDragonAdministrator

TSH should be around or under one and FT4 towards top of range and FT3 at least half way in range

Just testing TSH is completely inadequate

Getting full private testing is next step .....or try different GP first and ask for dose increase

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Have you considered sjogrens with a positive ANA result? It would fit with your difficulty swallowing.

Beckybexx
Beckybexx
in reply to rosserk

I thought about it but don’t have any of the other symptoms. My titre was 1:160 homogenous so GP thinks more likely lupus but I don’t have the most common symptoms of that either! No rash or sun sensitivity.

I had to increase my Armour thyroid after many years and am taking quite a bit more than I did five years ago. I had a TSH of 3 and collapsed on a golf course. It's difficult to analyze...so many factors involved.

My April results were from medichecks, all looked fine, T3 and T4 looked ok then but maybe it’s time for a retest. I’m just struggling to understand why it could change so much in a short time. All I can think is absorption issues? It’s a bit of a mystery. Thanks for the input everyone.

Update that might be useful for others! I fought hard and GP agreed to increase to 150mcg every other day. Result! She said glad I hadn’t taken it into my own hands and self medicated, I declined to comment on that 🙄

Also got an urgent ENT referral, must have caught GP on an off day!!! Lovely consultant who diagnosed TMJ disorder (jaw joint) so neck pain and swelling not necessarily thyroid related after all.

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