Feel like I'm going round in circles - Thyroid UK

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Feel like I'm going round in circles

Katyaz profile image
8 Replies

Hi I'm a newbie and I feel nervous about coming here because I don't know what to expect. I've been unwell for as long as I can remember. I take 50mcg levo but have been on higher doses before. My ovulation is out of sync, I have dry skin on my nose and face, hard stool every day, pain in joints, tiredness, white spots under eyes, dizziness, tinnitus, pins and needles, depression. I think my work is suffering too in that I am making more mistakes than usual.

If anyone could advise I would be grateful, thank you. I just feel there is no hope for me at the moment.

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Katyaz profile image
Katyaz
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8 Replies
SeasideSusie profile image
SeasideSusieRemembering

Hi Katy

You can expect support and help from people who have been through the same as you :)

Have you got any test results you can share with us? If you haven't got them then ask at your surgery reception for a print out, we are legally entitled to our results on the UK. Ideally you need:

TSH

FT4

FT3

Thyroid Antibodies

Vit D

B12

Folate

Ferritin

Post any results you have with their reference ranges, eg

TSH: 2.5 (0.2-4.2)

Tell us if you've been on higher doses before andnif so why was your dose changed.

Please say if you are taking any supplements and any other medication.

Katyaz profile image
Katyaz in reply toSeasideSusie

TSH 6.3 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

No FT3

Before that on 175mcg levo

TSH 0.03 (0.2 - 4.2)

Free T4 21.3 (12 - 22)

No free T3

Before that on 175mcg levo and T3

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.3 (3.1 - 6.8)

TPO antibodies 376 (<34)

TG antibodies 559.3 (<115

I have a long history with my vitamin and mineral levels, do I need to post everything from when they were first tested onwards?

SeasideSusie profile image
SeasideSusieRemembering in reply toKatyaz

Katyaz

Well it looks like your problem is like many others we see here. You have a doctor (endo?) who doesn't know how to treat hypothyroidism.

If I am understanding correctly then

on 175mcg levo and T3

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.3 (3.1 - 6.8)

then you had T3 removed. I'm guessing because your doctor said you were overmedicated and that would be because your TSH is suppressed. Actually, the fact that you are taking thyroid hormone replacement at a decent level can suppress your TSH. You were not overmedicated - your FT4 and FT3 were in range. If you felt well with those results, your dose shouldn't have been messed with, it's a good set of results.

So T3 was removed and

on 175mcg levo

TSH 0.03 (0.2 - 4.2)

Free T4 21.3 (12 - 22)

No free T3

Your FT3 should have been tested, T3 was removed, the least they could have done is see what difference it had made to your results.l I expect if they had tested it your FT3 would be very low in the range.

So now you are taking 50mcg and have these results

TSH 6.3 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

No FT3

Were you reduced from 175mcg Levo down to 50mcg in one go?

Why was your Levo reduced?

You are very undermedicated and need an immediate increase, 25mcg now followed 6 weeks later by retesting and another 25mcg increase, retesting and increasing by 25mcg to be carried out every 6 weeks until your levels are TSH around 1 or below with FT4 in the upper part of the range, then see where FT3 is and see if you need T3 reinstating.

**

TPO antibodies 376 (<34)

TG antibodies 559.3 (<115)

Has anyone bothered to tell you that you have autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Hashi's and gut/absorption problems go hand in hand and it's very likely that as a result you have nutrient deficiencies. If you post your current vitamin and mineral levels and say what you are supplementing that would be good. Include any further information that you think necessary.

Katyaz profile image
Katyaz in reply toSeasideSusie

I have a GP and an endo adjusting my dose. They do this between them. Yes reduced to 50mcg in one go, it was reduced because of TSH below range. Thanks

Katyaz profile image
Katyaz in reply toSeasideSusie

In June 2017

Ferritin 56 (30 - 400) probably lower now due to heavy periods, complete blood count and iron profile still showing iron deficiency

Folate 2.38 (2.50 - 19.50)

Vitamin B12 335 (190 - 900) on B12 injections due to low B12 symptoms

Vitamin D total 28.6 (25 - 50 deficiency) taking 800iu D3

SlowDragon profile image
SlowDragonAdministrator in reply toKatyaz

If you list your most recent vitamin test results and ranges plus what supplements you take on a new post

Members can advise

Low vitamins as result of Hashimoto's are extremely common and we have to improve them by significant supplements in order for thyroid hormones to work

Medics often have little idea and prescribe to small a dose to do any good

Eg often prescribe just 800iu vitamin D, but with Hashimoto's more likely to need 5000iu daily to increase levels and 2-3000iu just as maintenance dose

Katyaz profile image
Katyaz in reply toSeasideSusie

Sorry no other medication

SlowDragon profile image
SlowDragonAdministrator

Your high antibodies confirm you have Hashimoto's also called autoimmune thyroid disease

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Hashimoto's often results in low T3, very many of us need the addition of small dose of T3 BUT ESSENTIAL to get vitamins at very good levels FIRST and for very many gluten free diet helps or may be essential

Lots and lots of help on here to get you much better than you are at moment

Keep reading and learning as much as possible about Hashimoto's

Many Medics have little idea, your current endo included

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