Preparing thoughts for Endo appt on Monday - Thyroid UK

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Preparing thoughts for Endo appt on Monday

Pearlteapot profile image
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Hi, I have an Endo appointment on Monday 4 July

I have been on 75/100mcg since 23 May. I plan to ask her to go to 100mcg but maybe to ease into it by going 75/100/100/75 for a couple of weeks before going up to 100mcg and then sticking.

This is my recent history

On 75/100 I had heart palpitations for the first couple of weeks. That then more or less settled but still tingling hands, swollen water-retention layer over my body especially knees, often whacked out by 6pm but enough energy to do exercise (walking, yoga or swimming) most days but usually with evening crash. I had stopped HRT and was having huge amounts of night sweats, day sweats, insomnia feeling bad. By 18/19 June was feeling really brain-foggy insomnia bad again and did not want to stay that bad for 10 more days until Endo appointment on 4 July so I did a private test so as to get a record of my numbers before increasing a little bit.

Blue Horizons Test 21 June 2022

TSH 3.04 (0.27 - 4.20)

Free T4 16.9 (12.0 - 22.0) (49% through range)

Free T3 4.54 (3.1 - 6.8) (38.92% through range)

D3 109 (75-200)

I then increased just the tiniest amount from 75/100 alternate days to 75/100/100/75 but felt a bit weird on the second day of 100 and then went back to 75/100/75. So just an extra 25mcg over the week. I also went back on HRT but transdermal this time instead of oral. Felt a lot better but don't know if its the re-introduction of HRT or the tiny levo increase.

NHS test 30 June 2022 showed quite a big change.

TSH 1.57 (0.3 -4.20)

T4 18.4 (12.0-22) (64% through range)

GP had asked for T3 but lab don't seem to have done it yet so no idea if T3 has tracked the T4 increase.

I think it shows that a small increase bumped my TSH down from 3.04 to 1.57 and produced quite a good increase in FT4 that therefore I should continue at 75/100/100/75 or at 100 daily for 6 weeks to get under 1? But which?

Does 100 daily look too much? Perhaps I should go real slow and spend 6 weeks on the 75/100/100/75 protocol although unless my arithmetic is completely mad (v possible) is only an extra 50mcg over a fortnight???!!

If true the dose increase is just too small and I should go for 100mcg?

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Pearlteapot
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SlowDragon profile image
SlowDragonAdministrator

Looking at (helpful) profile

Folate was low at vitamin testing

Vit B12 - 762ng (160-925)

Serum folate 5.1 ug/L (2.9 - 5.0)

What vitamin supplements are you currently taking

Are you now on strictly gluten free diet and have you seen improvements since dropping gluten after coeliac test

Do you always get same brand levothyroxine at each prescription

Pearlteapot profile image
Pearlteapot in reply to SlowDragon

Hi SlowDragon

As at 21 June my Folate was 34.70(8.83 - 60.8) and Vit B12 is 506 (145 - 569) so it has greatly improved. I have been supplementing with Thorne B complex.

For what it's worth Cortisol (Random) 473.0 6am - 10am 166 - 507

I am taking Thorne B Complex, Vit D/K2 oil 3000 iu (Nature Provides), Cod Liver Oil with Vit D 1000 iu, Selenium 200mg, magnesium 200mg (but not every day), cordyceps.

I know I don't need both the Nature Provides Vit D/k2 AND the cod liver oil but can't decide between them. This forum recommends having the K2 with D3 but I like the omega 3 in the oil as well. Also the VitD/K2 is very powerful and I'm at a decent level now and it's summer so I may just use the cod liver oil till winter and then see how my levels are.

I have been gluten free since diagnosis in March. Definitely feel better but cannot attribute it with certainty to being gluten free rather than the Levo. Kind of taking it on faith at the moment.

Am doing a trial of no-milk for two weeks to see if it affects constipation. Shame as I was drinking a lot of home made goat milk keffir.

I'm eating very low grain, no alcohol, no sugar except low fructose fruits, lots of home made kombucha, keffir, fish, chicken stock and avo. Definitely less gas and bloating.

I'm also exercising about 6 days a week without (I hope) being a duracell bunny. Yoga and/or swimming and walking to the pond which a mile or so each way. I really need this very much for wellbeing and I read here that it helps with tissue perfusion of the T3

My Levo dosing is made up of 100mcg Aristo, 50mcg mercury pharma and 25mcg Wockhardt.

SlowDragon profile image
SlowDragonAdministrator in reply to Pearlteapot

Mercury Pharma and Wockhardt both contain lactose So if you stay on dairy or lactose free diet you would need lactose free levothyroxine

Pearlteapot profile image
Pearlteapot

Oh good point! And my two week lactose free trial is being compromised by the medication.

I don't think I am lactose intolerant as I did a SIBO breath test and didn't produce hydrogen but did produce methane. As I understand things, lactose intolerance will generate hydrogen. But Isabella Wentz talks about dairy intolerance as a separate thing to lactose intolerance. Not sure I understood fully but thought I'd do a trial anyway.

Pearlteapot profile image
Pearlteapot

The NHS blood test for T3 came through.

T4 is 18.4 (12-22) (64% through range)

T3 4.3 (3.1-6.8) (32.43% through range)

TSH 1.57

Consultant Endo said my palpitations were probably because I'm over-medicated. I said that didn't feel like my actual experience as they were much worse and improved when I added an extra 25mcg last week and I thought they were because my heart didn't have enough T3 as I'm only 32 % through range.

She said my TSH was good and they use TSH to diagnose (I silently said byee)

I proposed the smallest of increases from 75/100 to 75/100/100/75. She finally agreed.

Then she said she'd ask my GP to refer me to a cardio for a stress test. I saw this as cover for her insistence that my heart palpitations meant I'm over medicated and her refusal to accept it as a symptom of under medicating.

I hope that dose will take me under TSH 1 and then I can see if I've got a conversion problem. Ratio above doesn't look great does it but comments here are that there is no point assessing conversation until TSH is under 1.

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