Thoughts on my latest endo appointment - Thyroid UK

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Thoughts on my latest endo appointment

Mariaj123 profile image
6 Replies

Hello all

Had an appointment with my endo today , didn't see my usual endo was one of her team. Great start !

Told him how I'm feeling at the moment - how tired I feel , gritty eyes, muscle aches , how legs sometimes feel like lead, my weight gain. I mentioned that sometimes I get air hunger . He looked at me confused and said what's that ?!?!

My t3 is just below range I asked about this and he said oh don't worry it's only below by one point . He agreed to increase my levo to 100mcg ( currently on 75mcg) and did bloods to check my calcium.

Thing is he kind of scoffed at my aches and my gritty eyes and said he doesn't feel that my hashimotos is the cause as they are not thyroid symptoms. He said maybe something else is going on and I should ask my doctor to refer me to rheumatoid arthritis specialist. He also said going gluten free is a waste of time . And when I mentioned thyroid uk he didn't really reply

I really didn't expect this as I thought aches and gritty eyes were hypothyroid symptoms. These were the symptoms I had when I found out I was hypo they improved but have started up again. He has really worried me by saying something else could be going on .

My latest results are

Ft4 12.1(7.7-15.1)

( *plasma free thiiodothyronine level (XaERT) 4.2pmol/L (4.3-6.8) )

*TSH 3.79 ( 0.34-5.6)

Any thoughts about my symptoms would be much appreciated and may help to put my mind at rest.

Thanks maria

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Mariaj123
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SlowDragon profile image
SlowDragonAdministrator

He's possibly a diabetes specialist, (many are) certainly doesn't seem to know much about Hashimoto's

Was this blood test done as early as possible in morning and fasting and not Levo in the 24 hours prior to test (delay taking until after test)

Good that dose was increased

Have you had vitamin D, folate ferritin and B12 tested

Post results if you gave them. If not get them done and put on new post

See point 3 on this link

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

Mariaj123 profile image
Mariaj123 in reply to SlowDragon

They were done 9 months ago

vit B12 328ng/L

Ferritin 48ug/L (11.0-307.0)

Folate 5.4 (3.8 -25.0)

Vit D 45nmol * note says 30-50 may indicate deficiency - repeat in 6 weeks ( I have to pick up a prescription for 6 capsule to take one a week.

How often should we request they are all tested ?

And yes tsh tested early and before meds

Thanks for your help

Maria

bluebug profile image
bluebug in reply to Mariaj123

If you are in the UK you can request as much as you like but it doesn't mean you will get them done as each healthboard/CCG has different guidelines on when they will repeat them. Added to that you must have a clinical need for the tests.

Your vitamin B12, folate and ferritin results are all in range so no doctor or other medical practitioner will not repeat them on the NHS. However the ferritin and folate levels are not optimal.

The easiest way of getting the folate up is to take a good vitamin B complex. That way you will balance all your B vitamins.

The easiest and least painful way to get your ferritin up is to eat liver once to a maximum of twice a week. You should hide it other meat based foods e.g. bolognese, casseroles if you don't like the taste. If you can't do that then you will have to take iron supplements and get a private tests. Iron supplements can cause any one or a mixture of constipation, diarrhoea, nausea and bloating.

With vitamin D find out the strength of the capsules you have been prescribed. They should state the international units (IU) on them. Then start a new thread about vitamin D stating your level and what you have been prescribed. You will get proper detailed information on it plus links to sources. Many healthboards/CCGs will not retest people who are insufficient and even if they do you only get one retest, so you will need to sort out your own vitamin D tests at some point.

Anyway in your case the main issue seems to be your thyroid condition is not medicated properly. If the doctors refuse to believe it then simply say if it is not my thyroid what is it? If they try and say you are depressed state that gritty eyes are not a symptom of depression. BTW if you can, get your eyes tested by an optician before you see another doctor. Make sure you tell that optician that your eyes feel gritty.

greygoose profile image
greygoose

The younger the doctor is, the less he knows about symptoms! He probably thinks : low thyroid = weight-gain, hair-loss, fatigue. And, that's that! I bet he has no idea that there are over 300 symptoms of low thyroid!

Phoenix605 profile image
Phoenix605

You might want to fill in the symptom checklist on TUK, contact Louise Roberts for a copy of the Dr Toft pulse article and take them to appts with you. You can then insert them in the appropriate orifice of any ignorant minions if your endo isn't available, this one wasnt talking out of his mouth. I have never suffered from dry eye til hypo, optician knew it was hypo symptom immediately, got my meds right, no dry eye.

Yes most hypo symptoms can also be caused by other things but unless you are already optimally medicated with good nutrient levels hypo symptoms is the most likely, if they persist after optimising then you might need to consider other causes.

SlowDragon profile image
SlowDragonAdministrator

As you have had 25mcg dose increase (good) you should have blood retest 6-8 weeks later.

Request that they also check vitamin D, folate, ferritin and B12

Very important to stop vitamin B complex 3-5 days before any future blood tests as biotin (in most B complex) can falsely affect test results

endocrinenews.endocrine.org...

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after

If they won't test vitamin D - vitamindtest.org.uk - £28.

betteryou.com/health-matter...

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