Is my thyroxine too low now? Advice please

[Love2camp]

T4 =14 normal range 11.5 -22.7

TSH = 9.37 normal range 0.3 -5.5 mu/l

I've been treated with thyroxine since I was about 22 and I'm 54 now. I'm very overweight but try to eat healthy and count calories.

The problem is my weight yoyo's a lot. Twice now when I've been losing weight I've suffered severe hairloss and blood tests have shown my TSH has been low resulting in my thyroxine being lowered. This stops my weightloss in its tracks and my weight then goes up again.

TSH was 0.1 in May2022 so my GP lowered my thyroxine from 125mcg to 100mcg per day. Since then I've been exhausted, falling asleep every day and unable to function. My weight has increased, I'm unable to do my normal activities or go to the gym. My hair is growing back but my weight is steadily increasing. My quality of life is terrible. I look and feel awful. My face is puffy and hair an uncontrollable mess.

Blood tests have shown a steady increase in TSH to its current level of 9.37.

I'm so fed up of this. I also have rheumatoid arthritis and am immune suppressed. I feel old and everything hurts.

Any advice would be much appreciated. I'm not sure what the GP will do next but I need to go armed with more knowledge of how to tackle this.

[Jaydee1507 Administrator]

Welcome to the group.

Dieting can lower TSH if we are in calory deficit. Better to get your dose right and get key vitamins to OPTIMAL to help our thyroid hormone work well.

Your TSH is currently far too high and your FT4 too low. You need to see your GP and insist that your dose gets put up a full 25mcgs.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

[Love2camp in reply to Jaydee1507]

Thanks for such a quick reply Jaydee. I'll have to do lots of reading on the points you've mentioned and hopefully get my dose increased. I feel so awful and just knew my dose was too low. The blood tests are something I'll look into.For a long time I've prioritised my rheumatoid and just got on with the thyroid issues but I'm sick of feeling so tired and it's time to educate myself. Thanks

[crimple]

Love2camp, have you ever had your T3 level tested. Your T4 is low in range and if your T3 is also low in range then you are very undermedicated. You could be a poor converter and might need some T3.

[Love2camp in reply to crimple]

Hi Crimple, no my GP has never tested my T3 level. Is this something I can have done as part of the private blood test. I'm going to read what I can and do whatever I need to. I can't stay on this constant merry go round of exhaustion, weight gain, weight loss, hair falling out forever. It's really getting me down.

[JAmanda in reply to Love2camp]

gp will never test t3. We’ll worth spending money on the private tests via Medichecks etc.

[Love2camp in reply to JAmanda]

Yes I'm going to get a private test done. It's hard enough to get a gp appointment at the moment.

[crimple]

Love2camp, T4 is a storage hormone and your body has to convert T4 into T3 which is the active hormone. Only T3 can supply the hormone needed by every cell in your body to function properly. I took a long journey to get where I am today which is taking 100 mcgm Levo (T4) and 15 mcgm Liothyronine (T3) I am a poor converter of T4 to T3 Everyone is an individual and we all end up on different doses to supply our bodies needs.

Have you had your vitamin levels checked? Vit D, B12, folate, ferritin. They need to be at optimal levels (not just in range) to help your body use your thyroid hormone.

[Love2camp in reply to crimple]

My vitamins, foliate, B12, ferritin haven't been checked since November. If I remember correctly my folate and ferritin were high. I'll have them done again. Speaking to the gp on Monday about upping the thyroxine so I'll mention it then. I'll probably end up getting them done privately as well as the thyroid tests. The problem at the moment is I'm so tired and foggy it's hard to get aything sorted. I imagine everyone on here has been in the same boat. Thanks for taking time to explain for me. There's a lot to learn