Moving from levo to thiroyd... help?: Hi Guys, I... - Thyroid UK

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Moving from levo to thiroyd... help?

vixvixvix profile image
12 Replies

Hi Guys,

I'm new here and reading all your posts have been so helpful in the last couple of weeks! Like many of you I've been poo-pooed by my GP and they basically think I'm crazy and an hypochondriac (though the last eye roll they got from me when they went "oh really? you were depressed?" "Yes, I was (f**king) hospitalised for it. It is on my file." might have dropped my eyeballs right out of my eyes).

Finally after a series of ridiculous arguments where they've told me I'm wasting their time and that I'm a delightful picture of health and go do more exercise (I spin twice a week, do hot yoga twice a week, swim and have personal training twice a week to rehabilitate a back injury they tried to fob off with some paracetamol, not sure how much more they think I should be doing) I've taken matters into my own hands and ordered some thiroyd. Because, continuing on doing the same thing while it's not working is insanity (or for the NHS, their m.o.). I'm not particularly interested in seeing an endo privately as I've also have PCOS and was put on metformin "for life"- by 2 leading "experts". Thankfully I found an amazing chinese herbalist who freaked out about that (at least someone sees that it is ridiculous to put a patient without diabetes on diabetes medication) and has helped me put my stubborn ovaries on track, oh the joy of menstruation every month! She isn't offering any solutions to the hypothyroidism though, but comments every time she takes my pulse that I'm exhausted (which I am) and need to see the doctor to sort the thyroid out (her professional opinion as a doctor who no longer practices western medicine).

I'm currently on 75mg levothyroxine - though i cheat and take 100mg every other day already and waiting for some blood tests to come back this week. How much and what's the best way to change from levo to thiroyd? It appears that some advocates a straight switch (so that would work out to be 2 grains?) and others suggest tailing the levo while starting with 1/2 grain at the same time and up gradually? The lovely people who made the switch, how did you guys do it and what would you recommend?

Exisiting conditions: depression (remission), pcos, insulin resistance related to pcos, hypothyroid, asthma, hypermobility, some serious repetitive strain on both arms and shoulders (I'm a massage therapist, it's part of my life)

Current symptoms:

low fluctuating basel temp (wildly between 34.3 to 35.3 from day to day)

lowish heart rate around 60 (I am not convinced I'm *that* fit)

exhaustion daily, generally feel super run down- I need a nap every day but I can't sleep for more than 6 hours at night.

headaches may be 1-2 times a week- usually a very low grade migraine, mainly tingling through the trigeminal nerve and right eyeball, esp. if I forget the 5htp

always cold

get sick very easily (had cold every other week this winter and brought back some tropical fever from holiday- no one else I went with got sick)

feel flat (goes away with 100mg of levo, doesn't really feel like depression to me)

feel fat (I gained 30kg (from 65kg) when I went on sertraline about 15 years back and it never really came off even though I stopped may be 7 years ago. Lost 10kg but still many to go!)

constantly constipated

muscle aches and pains (again better with 100mg levo)

massive brain fog and totally forgetful

Currently taking source of gold multi-vit, 5htp, L-tyrosine, kelp, glucosamine

Thank you so much for your help guys! Here's to feeling healthier (hopefully!)

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vixvixvix
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Clutter profile image
Clutter

Welcome to the forum, Vixvixvix.

1 grain (60 or 65mg) Thiroyd is equivalent to 75mcg Levothyroxine. You could switch straight over to 1 grain and increase to 1.5 grains a couple of weeks later.

Patients on thyroid replacement should be getting the iodine they require from their thyroid meds. Unless you have tested iodine deficient it is not a good idea to supplement kelp which is very high in iodine which can trigger autoimmune thyroid disease (Hashimoto's),

Hypothyroid patients are often low/deficient in ferritin, vitamin D, B12 and folate which can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid patients. Ask your GP to order blood tests and post the results and ranges in a new question for advice.

_________________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

vixvixvix profile image
vixvixvix in reply to Clutter

Thanks for your help!

I'll post my results tomorrow when I've collected it and ask for more help. They were only done last week and I ran out of thyroxine for a week so it should be a good pic of how my body is "normally" (terrible).

Clutter profile image
Clutter in reply to vixvixvix

Vixvixvix,

If you stopped taking thyroxine for a week before your blood test the results will be completely skewed.

vixvixvix profile image
vixvixvix in reply to Clutter

I only did that because they refuse to give me more levo even though I was still feeling super sick at my last blood test and I was "perfect" according to the doctor (I think I was 'a bit better' on 75mg but could do with more). Since health wise I didn't change at all during the 6 months I decided I needed to do something a bit more drastic this time. I did the blood test last week while mulling over what I should do, and since then I've decided what I actually needed to do was to ignore him (since they point blank refused to support and monitor me on ndt and told me the tests and not symptoms count) and switch and get them privately done in a couple months time?

Was that a bad decision?

Clutter profile image
Clutter in reply to vixvixvix

Vixvixvix,

I was pointing out that it is a waste of time to have a blood test a week after stopping Levothyroxine as it will give a skewed result. I wasn't criticising your decision to self medicate.

Jodypody profile image
Jodypody in reply to vixvixvix

I'd second the straight switch. I tried tapering and I just suffered until I got to the right dose.

vixvixvix profile image
vixvixvix in reply to Jodypody

Thanks. Do you mind if I ask what happened?

Jodypody profile image
Jodypody in reply to vixvixvix

I had hypo symptoms until I reached the dose. Unless you're elderly or have a weak heart you can do a straight switch. The consultant recommended it and she was right.

Glynisrose profile image
Glynisrose

Start slowly on 1/4 grain and build up over a few weeks. DO NOT do a direct swap even though your doctor might reccomend it.

vixvixvix profile image
vixvixvix in reply to Glynisrose

Thank you! So, stop levo completely and start 1/4 grain the next day? Won't I feel terrible for the first few weeks because I'll be going from 75 to circa equivalent of 25? Or does it work it different because it will be bound t1 to t4 vs plain free t4? This is so confusing and fascinating.

Glynisrose profile image
Glynisrose in reply to vixvixvix

Personally I stopped levo for 2 weeks before starting NDT but I'm told that stopping levo on one day then starting the NDT the next is ok.

matty220 profile image
matty220

I was on 125mg of Levo and I've done a straight swap to 1 grain of Thyroid-S

It's only day 3 but right now it seems fine. I know I'll still have some Levo in my system. I'm taking my temp and pulse every morning. My temp is about 35 and my pulse is about 50 but I have quite low blood pressure so I suppose that would give a low pulse?

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