My GP has reduced my levo to zero!: Hi all, I... - Thyroid UK

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My GP has reduced my levo to zero!

Hi all, I have been on levo for 6 months now. I got as far as 88mcg and started having even worse symptoms of hypo. My guess was that 88mcg wasn't enough to keep me going but my GP has said that I had to reduce it to 50mcg. I did this for 6 weeks and I must say I did start to feel better but my TSH started to rise again so I presume that is why. I had a blood test last week. Came back TSH 1.7 (0.4-4.5) T4 13.1 (9-20) T3 3.3 (2.67-5.8) this was on 50mg. She said that because ok I'm feeling better It obviously didn't do me any good so she has asked me to come off it completely and see what happens to my next blood test. I have no energy, I'm depressed and since I reduced from 88mcg I've put on 7lb and it just keeps getting worse but she's not concerned about the weight gain she's just happy my heart rates is back to 70's. On higher dose pulse was 90- 100 with adrenaline rush during the night and first thing in morning. I don't know what to do next?

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Couldn't see any vitamin test results or antibodies results in previous posts

Do you have Hashimoto's

Can you add recent vitamin results and ranges

Suggest you get full Thyroid and vitamin testing after 6-8 weeks on CONSTANT dose, wether that's now at 50mcg or after stopping Levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Have you considered getting DIO2 gene test?

thyroiduk.org.uk/tuk/testin...

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I have very low antibodies so no hashimotos. I have them checked every year. Have got a blue horizon thyroid 11 test kit. I do it every year so I'm holding back till the levo is out of my system. I do take all the bits and minerals have done for years but no answers?

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Come back with new post once you get results and ranges on private testing

Perhaps consider DIO2 gene test after that

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I think you need to see a different GP as that one seems very ignorant. Undermedication can cause adrenaline rushes and high heart rate. You should have been given an increase to 75mcg last time, not a reduction to 0

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I got as far as 88mcg and the hypo symptoms were much worse. I thought that I should have gone higher but hospital said no. I think I have central hypothyroidism as every test I've had everything is low end of normal but because I'm scraping by they say I'm normal

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"Undermedication can cause adrenaline rushes and high heart rate."

Sorry to butt in but is THAT why I was told I had some hyper symptoms (as well as low TSH) and need to reduce my thyroxine?

Do you have any more information about that, especially any research.

Thanks x

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Yes you are right. I have discovered that the docs are so ignorant. They have put it down to hyper symptoms when I was nowhere near hyper. The funny thing was the ambulance driver said I think you most likely need to increase your thyroxine! Hospital said oh no high heart rate and TSH of 0.4 reduce that thyroxine! Now my doc has taken me off it completely as she says it's not suitable. If you Google peat.com Ray Peat explains all about, high heart rate, adrenaline and hypoglycemia. My symptoms stopped after my thyroxine reduced to 50mcg and my TSH went to 1.7 but that was because my thyroid took over T4 production. If my thyroxine had been increased high enough to compensate I'm sure I would have been fine. My brain wasn't coping as too little circulating. I think this is what happens we need to raise it high enough to get over that hill with a suppressed Thyroid and everything is then ok

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Theres a study which shows that hypothyroid people have high adrenaline.

ncbi.nlm.nih.gov/pmc/articl...

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Thank you a very interesting read x

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That sounds interesting! I find also that if I am trying to force myself to concentrate when really tired, I often get what seem to be repeated hot flushes, but they don't feel quite the same and are more frequent than the usual ones. I've had flushes for nearly 25 years - long before any thyroid symptoms - but maybe they are connected!

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