advice again please

[Goinginsane1]

sorry for yet another post.

I have recently reduced my thyroxine from 75 to 50 due to suspected over medication since having my child 20months ago and no longer being in the pill. Even though my bloods have been in range (TSH 0 or 1). I lowered it from 100 last year and my severe anxiety got better however, haven’t lowered it again until now to see if my on going symptoms resolved.

Since lowering it I have noticed some improvements ie period back to normal, less discharge, my armpits are nowhere near as itchy and uncomfortable, less inflammation and no swollen fingers, sleeping better etc.

BUT, now I have suddenly started with really bad high stomach acid to the point I was in A&E last week due to breathing problems and chest pain. The dr there said he thinks it’s high stomach acid and prescribed lansoprezole. I have upped the dose of this and it is helping a little but still really struggling to eat anything and it’s affecting my breathing (like asthma which I don’t have). I have extra mucus in my throat all day, swollen glands in my neck, voice affected, sweet taste in mouth at night and my teeth m/mouth feels horrible too.

I have read on NHS web site that an increase in estrogen/progesterone can cause high stomach acid/GERD and I suspect that the change in hormones after reducing my thyroxine could be the cause.

I had low estrogen levels last year when they were tested but nothing was ever done about it and Drs just dismissed it really and said it was normal for my age (36). I have believed my thyroid medication has been out all of last year but drs said it was fine as I was in range.

Anyway, my question is… do you think that my body is just readjusting to the reduction in levothryoxine (and possibly the increase in estrogen levels as I suspect this to be the case as my periods have gone back to normal) and the severe GERD will sort itself out and go away soon or do you think I should up my dose again slightly and maybe take 75/50 alternate days to see if it helps the acid? Or should I stick it out at 50 as other things have got better and hope the GERD settles down soon?

[Jaydee1507 Administrator]

Lansoprazole is a PPI and will make your low stomach acid worse and even poorer vitamin absorption. Have you got your vitamin levels tested yet? 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...

As has been said before, 50mcgs Levo is a starter dose and likely not enough for you. I think you should increase your dose and get your vitamin levels to OPTIMAL with supplements.

Instead of a PPI you could try this. Try adding a teaspoon of apple cider vinegar (must contain the ‘Mother’, see label) to a glass of water before your main meal. This helps acidify the stomach.

[Goinginsane1 in reply to Jaydee1507]

I have very high stomach acid not low. I am aware that the ppi can affect absorption of levo though.

I have a blood test on Tuesday with nhs. I am waiting to see what they do exactly and then possibly pay for a private blood test after if it doesn’t cover what I need to know.

I suspect that by lowering dose and periods and other symptoms improving/got better then that is a positive sign. I am just concerned about the high stomach acid and the issues that have arisen with that, possibly due to an increase in estrogen/progesterone. I have lost a lot of weight and now the stomach acid is making it even more difficult to eat. I believe I had low stomach acid prior to reducing levo.

[Jaydee1507 Administrator in reply to Goinginsane1]

I know that it will feel like you have very high stomach acid but the reduction in Levo will reduce your stomach acid further and it can be very confusing.

Get back to us when you have some new results, ideally with an FT3 and vitamin levels. I hope it improves soon.

[london81]

were your free t3 and antibodies tested? I would be interested to know what those levels were like rather than tsh

[Goinginsane1 in reply to london81]

the last T4 was in November last year and was 24.1 (11-25).

T3 was 4.4 last October.

The rest have only been TSH since.

I have requested a complete thyroid panel next week but the dr said it depends on if the lab will do it or not 🙄

Antibodies were done back in november and were negative then.

[london81 in reply to Goinginsane1]

I had similar experience where an nhs endocrinologist requested free t3, my GP agreed, and the lab refused! You can run the test yourself for around £49 it might be a good idea, your free t3 was not that high then and will be lower now ( I like to calculate my ranges as a percentage as i think I’ve been told free t3 should ideally be 75 % through the range)

[london81 in reply to Goinginsane1]

this snazzy calculator was created by a members husband thyroid.dopiaza.org/

[Aurealis]

so sorry you’re not feeling well. I suppose you could trial a small increase in dose while monitoring your symptoms and signs (heart rate, temperature, blood pressure if you have a way of measuring it). I have done so in the past but you must be careful as chest pain is one of your symptoms. It’s best to wait for NHS or private T4 (and T3) result if possible. It must be so difficult now that testing is so difficult to get

It’s so tricky when you get symptoms that occur with both over and under medication (and could be due to something else entirely). . But your dose is low. The other thing is, if your levels are very low you may be very sensitive to Levothyroxine, and it’s not the amount you’re taking or the increase in levels, more oversensitivity. A bit like eating after a long fast… if you know what I mean. The oversensitivity will reduce gradually as your body gets used to increase. Good luck

[Goinginsane1 in reply to Aurealis]

thanks for your reply.

Since lowering levo from 75 to 50 I have started with horrendous silent acid reflux that I’ve never had before. After speaking with GP it was decided to trial 75/50 alternate days to see if that helps and I meet in the middle somewhere.

I have taken 75 the last 2 days to see if it stops the acid, which it has definitely helped, however, last night in bed my whole body muscles were aching and tingly all night even down to my toes.

I have taken 50 today and starting to alternate it from here.

I don’t suppose you know of a brand that ISN’T TEVA that makes 25 or 12.5mcg dose?

Maybe I should try taking 62.5mcg daily?

I am so fed up of feeling unwell. It’s been 21 months now since having my baby and still not right 😞

[Aurealis in reply to Goinginsane1]

Aching muscles is a symptom of too high a dose, for me. Have you tried GP suggestion 75/50 alternating ( if too high or too low on a dose like that, I’ve sometimes tried a 7 day pattern eg 75 Mon, Wed, Fri and 50 Tue, Thu, Sat,Sun to get to an intermediate dose

The Thyroid UK website has a list of brands and doses - are you in UK?

Having a baby is a huge upheaval in life, physically, emotionally, mentally and hormone-wise, and then the baby’s needs are constantly changing as they grow, a very demanding time for mothers. Well done for hanging on in there, it will get better.

[Goinginsane1 in reply to Aurealis]

I suspect that the aching muscles is from too high a dose too. But people are saying I might not be on enough thyroxine 💁 I’ve lost weight, anxiety, heart palpitations,

I have just started 75/50 yesterday instead of 50 due to being unable to eat due to stomach acid and chest pain after lowering it from 75 to 50 3/4 weeks ago.

I took 100/75 alternate days for a few months from 100 and my extreme anxiety symptoms eases considerably.

Yes I am in Wales.

It’s been the hardest couple of years of my life between becoming a mother and dealing will feeling so unwell the whole time. I am praying to get there soon so I can start living my life as I should with my little boy 🤞🏻

[tattybogle in reply to Goinginsane1]

Wockhardt make 25's , and so do Mercury i get them for 25's co i don't like Teva/

I prefer to take the same dose every day (112.5mcg) rather than 125/ 100 alternate, so i cut them in half .

[Goinginsane1 in reply to tattybogle]

I have noticed when I take 75 at night my muscles have been ridiculous achey and tingly all over and when I take 50 the glands in my neck swell. I am thinking of contacting GP to see if I can get 25 that isn’t TEVA as it doesn’t agree with me so I can cut it in half and take 62.5 daily so it’s steady. I feel like they think I am being stupid though 😞

[tattybogle in reply to Goinginsane1]

Yes, they probably will think that ........i'm sure mine think i'm stupid/ deluded too because i get them to prescribe 2 x 50 mcg rather than 1 x 100mcg so i can take half my dose in the morning and half at bedtime to even it up even more .. because i think i feel better when i do.

You need to grow a bit of a thick skin in this game and learn to trust yourself .

from their perspective , it's a placebo effect and you're deluded , but if it's a change that doesn't cost them much money , and if it will shut you up and get you out of the office, they will usually agree to do it anyway if you ask nicely .

from your perspective .. not much point worrying what they think , , they probably think it already anyway , and if that's that's what it takes to get what you need , so be it .

Trust yourself .

Are you an idiot ? >>> No.

Are you just someone wanting to try a perfectly logical approach that is simple , easy to achieve , doesn't hurt anyone, and doesn't cost a load of money >>> Yes.

if there eyes are so blinkered they can't see this is a perfectly reasonable request then who's stupid really ?

and if it IS a placebo effect but it makes you feel better ,... so what ?.. isn't that the objective of 'Doctoring' ?

[Goinginsane1 in reply to tattybogle]

love this! Thank you for the boost!

[Aurealis in reply to Goinginsane1]

sorry, only just read your reply, just back from holiday. Hope you’ve seen some improvement in the meantime