Recent results & help needed on next steps - Thyroid UK

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Recent results & help needed on next steps

Smv95 profile image
3 Replies

Hi, I'm really grateful for any help please.. My theory is that I am having a gut issue because of the supplements I am taking not making a difference and I have no clue where to start with that. I have been attempting to help myself since November 2022 when I was fed up of feeling crappy. I have been taking the below supplements since then with not much changing!

Background... First diagnosed with Goitre and Graves disease when I was 15. Had just under 3 years of treatment of carbimazole, it first was effective and then was not effective. I had high blood pressure and heart palpitations. I then had a thyroidectomy when I was 18. I am now 10 years down the line, heavier than ever and not feeling much better! I have not seen an endocrinologist since my thyroidectomy when he told me I was cured (!) and I now have a GP that has no clue on thyroids and palms me off when I ask them to do more tests.

I am currently on 125mcg levothyroxine. I take this first thing in the morning with no other meds with water and before any food. I have coffee an hour later.

I then take evening primrose oil 1000mg (hormonal reasons) cetirizine hydrochloride (hayfever allergies) and Vitamin B complex (including B12 250ug, Biotin 50ug & Folic Acid 400ug etc)

When I go to bed I take Vitamin D 1000IU, Iron Bisglycinate 28mg (high strength gentle iron) & 20mg Fluoxetine (anti-depressant).

The below is the results of 2 private blood tests I have had done. The first in January & the other in June. Both times my CRP HS level has been high, but once again I've been told it's normal by my GP. I have also made sure not to take my B12 that contains biotin at least a week before the test and not taken my thyroxine in the morning of the test either.

Medichecks - January 9th 2022 - only had water, no food before, last ate 9pm previous night.

CRP HS result 5.15mg/L range 0-5mg/L

Ferritin result 23.5ug/L range 13-150ug/L

Folate Serum result 9.42 ug/L range 3.89-19.45ug/L

Vitamin B12 - Active result 65.6pmol/L range 37.5-150pmol/L

Vitamin D result 56nmol/L (<25 deficient 25-<50 insufficient 50-75 adequate <75 - 200 optimal

TSH result 1.44mU/L range 0.27-4.2mU/L

Free T3 result 3.86pmol/L range 3.1-6.8pmol/L

Free thyroxine result 17.3pmol/L range 12-22pmol/L

Thyroglobulin result 12IU/ml (range <115IU/mL)

Thyroid Peroxidase Antibodies result <9IU/mL (range <34)

Medichecks - 13th June 2023 - only had water, tested at 6:30am. not eaten since 8pm night before

CRP HS result 4.91mg/L (range <3)

Ferritin result 48.6ug/L range 30-150ug/L

Folate Serum result 29.4nmol/L range 8.83-60.8nmol/L

Vitamin B12 - Active result 68.1pmol/L range 37.5-188pmol/L

Vitamin D result 67.1nmol/L range 50-250nmol/L

TSH result 0.529mIU/L range 0.27 4.2mIU/L

Free T3 result 4.34pmol/L range 3.1-6.8pmol/L

Free thyroxine result 19pmol/L range 12-22pmol/L

Thyroglobulin antibodies result 16.2kIU/L range 0-115kIU/L

Thyroid peroxidase antibodies result 11kIU/L 0-34KIU/L

Thanks in advance!

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Smv95
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Forestgarden profile image
Forestgarden

Hi Smv95, I feel you! I've had gut issues since childhood (now 56), fobbed of by GPs... eat more fibre, drink more water, more exercise, take these pills. Diagnosed with Graves 2014, on carbimazole, then radioiodine 2019, now on levothyroxine... and my gut issues are..... better when my diet is completely under my control.Over the last 2 years I have made a concerted effort to identify foods I'm intolerant to thru an elimination diet. Buy a book which will help guide you through an elimination diet. It is hard, but worth it. It will give you insights into how your gut works with different foods. I am absolutely convinced of a link between gut health, intolerances and inflammation. And my psoriasis (another autoimmune condition) is a direct indicator of my level of inflammation at a particular time. I know that if I eliminate milk protein, and limit wheat to the minimum, my psoriasis improves. I also know that pre- and probiotics, along with bone broth help to heal the gut and reduce inflammation. I don't yet take other supplements.... thats my next focus. My t3 results are similar to yours and I feel are too low.Sorry for the ramble, I guess what I'm saying is you need to optimise the things you can control.... your gut health, your diet (eliminate foods you have an adverse reaction to), exercise as well as you can... then supplement the vits and mins you are low in. Then, you can focus on trying to raise your T3 levels. All of these things need to be optimal before your digestive issues improve. Others here are better qualified to comment on your results, but my feeling is you should go back to square one.

DippyDame profile image
DippyDame

Your FT3 is too low

As is your vit D

These are closely followed by vit B12, folate and ferritin.

Your low FT3 along with relatively high FT4 indicates poor T4 to T3 conversion.

To support conversion you need to optimise essential nutrients vit D, vit B12, folate and ferritin.

For good health almost every cell in the body needs to be flooded with T3 which in turn needs to attach to T3 receptors so that it can do it's work!

Low cellular T3 = poor health

T3 needs to be available in a constant and adequate supply...

and both FT3 and FT4 need to be roughly approaching 75% through their respective reference ranges

Avoid products containing soya which can impair levo absorption

You are not "cured" you are under/ wrongly medicated!

Although it appears that working on the nutrients has begun to improve your conversion....well done!

I'd suggest you initially raise your levo dose to 125mcg, remain on that steady dose for 6 weeks then retest.

The results will point the way forward

If that fails to produce/ raise adequate FT3 then you may need to see and endo with a view to adding a little T3.

Raising levo further would put FT4 close to top of range which in the long term is not advisable

Do not accept dose change based on TSH which is an unreliable marker

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

Good luck

CernCrystal profile image
CernCrystal

Hi, like you I have no thyroid but am on lower levo. With the help of the women on here I have got to happy place experimenting with their suggestions.

I eat minimal carbs and avoid gluten wherever possible. (I eat high fat now)

I take folate and b12 sublingually (drops under tongue) pills were not being absorbed

I take levo at 3am - min 4 hours before anything other than water

I have put fermented food into my diet - kimchi, apple cyder vineger (with "Mother"), kefir, and have had fun making them myself.

I feel much better now - and am losing weight, although I'm eating more! Lowest I've been for 11 years. Brain fog has gone and bowels seem much happier too!! My mood has lifted as well.

I get great sleep naturally as on CPAP machine following thyroidectomy - but it is really important to get good sleep if you can.

Best of luck with your journey.

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