Help! I've run out of options

[Bookworm63]

Can any of you kind folks out there help me please. I've been taking levo for just over three years now and I've tried most of the different types I can get hold of and nothing seems to suit. I end up feeling nauseas and full up on them. I think I am converting ok but they all seem to give me side effects in my bowel. I was on Almus to start off with and eventually they made me feel nauseas to the point I definitely couldn't take them anymore, think that was the lactose. Then tried Teva they made my mood great but blocked up my bowel completely! Think that was the mannitol. Tried the liquid for about a month and got nauseas off and on and never really got my appetite back. Told Dr about Aristo and he put them on my prescription and I managed to source them locally. Felt OK for a while and my TSH was good and my mood was good but eventually felt a feeling of fullness and no appetite. Could only eat the smallest of meals before bloating and never felt hungry. Think that must have been the magnesium as I was regular with those. Have gone back to the liquid and after the third day a different feeling in the bowel but nevertheless its making me feel sicky and very uncomfortable. I'm at a loss now. I feel I am managing the side effects of the medication to the detrement of my thyroid health. I don't think I need NDT for conversion but it maybe the only thing I can tolerate. To top it all my blood pressure has gone up and I may well end having to take pills for that! Any advice please would be most welcome, thank you 🙏

[Lalatoot]

Bookworm, to advise based on evidence we really need your thyroid and vitamin blood results. That way we can see if there are imbalances there.Are you still dairy free?

Have you ever stayed gluten free strictly for months?

Armed with this info we can provide informed opinions.

[Bookworm63 in reply to Lalatoot]

Thank you lalatoot, I've been avoiding private blood tests as I'm very squeamish but I guess I've just got to get to grips with it. When things are running relatively smoothly I tend let things slide. I think its because now the pandemic rules have calmed down I'm much more social and active so I'm getting more distressed when I am out socialising. I know I've got to have this more looked into so I will put my big girl knickers on and get a full thyroid panel done and post on here.

[Lalatoot in reply to Bookworm63]

Yep get those big pants out of the drawer!

[SlowDragon Administrator]

Sounds more like not on high enough dose as well as intolerance to different brands

Constipation

Lack of appetite

High blood pressure

These are symptoms of being not on high enough dose levothyroxine

How much levothyroxine did you get up to

Levothyroxine doesn’t “top up” failing thyroid levels, it replaces your own thyroid output, so it’s essential to be taking a high enough dose

Standard starter dose of levothyroxine is 50mcg, but dose should be increased up as fast as tolerated

Bloods should be retested 6-8 weeks after each dose increase

ESSENTIAL to test vitamin D, folate, ferritin and B12

When were these last tested

What vitamin supplements are you currently taking

Have you had thyroid antibodies tested

Assuming you have autoimmune thyroid disease have you had coeliac blood test done and are you now on strictly gluten free diet

[SlowDragon Administrator]

Looking at previous posts

Looks like you never had dose increased beyond starter dose of 50mcg

Approx how much do you weigh in kilo

As over 60 years old you might have started on 25mcg levothyroxine, but dose should still be increased slowly upwards. Being left on just 50mcg is inadequate

Dose levothyroxine is increased slowly upwards in 25mcg steps until on approx 1.6mcg levothyroxine per kilo per day

Unless extremely petite likely to need to be on at least 100mcg levothyroxine per day

Dose frequently needs fine tuning

Some people need higher dose than this, others need slightly less and addition of T3

But if been left on just 50mcg all these years …..symptoms are because you are not on high enough dose levothyroxine

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Please add most recent test results that have been taken after at least 8 weeks on constant unchanging dose and brand of levothyroxine

Likely to have low vitamin levels if been left under medicated for months/years

ALWAYS test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

[Bookworm63 in reply to SlowDragon]

Thank ypu so much for all the info SlowDragon so good to be listened to by people who know what they're talking about. I went up to 75mcg last September and had blood test at Dr's surgery in November

Results below were all I was given.

Serum TSH level 0.53 mIU/L 0.27-4.20mIU/L

Serum free T4 lev 19.6 pmoI/L 12.00-22.00 pmoI/L

At the time I felt quite well but was still getting full up very quickly and not eating great. I felt too well really and couldn't get to sleep easily and had fast heart palpations and hot flushes. So started taking 75mcg one day and 50mcg the next. That seemed OK to start with but I got ill with colds and coughs, (not covid,) over December into January and then I didn't know how I felt for a while. When it all calmed down in January I continued with 75/50 regime but I always had a rumbling tummy and trapped wind feeling. I must admit to have messed about with the doseage recently and when I first reduce I feel better for a few days then the symptoms return. Recently after a lunch out and time in the park afterwards with the family I felt so full up and poorly that I didn't take anything for the following 3 days. By day 2 my appetite returned and I wanted to eat so I left it another day just so I could enjoy food again. By the 3rd day I was beginning to feel extremely tired and I knew I'd have to go back to the levo. I've been splitting the dose and taking at night and in the morning to try and lessen the impact of the side effects.

I know what you're saying about getting a full panel of results done it makes complete sense. I'm just going to have to man up and get it done. Thank you so much for taking the time to reply its much appreciated. I feel better just knowing that there are people out there willing to listen and help.

[SlowDragon Administrator in reply to Bookworm63]

Serum TSH level 0.53 mIU/L 0.27-4.20mIU/L

Serum free T4 lev 19.6 pmoI/L 12.00-22.00 pmoI/L

This result tells you very little

You were unlikely over medicated

Ft4 within range …..no Ft3 result, no vitamin levels

So you need to get back on 75mcg every day for minimum 6-8 weeks before considering doing any thyroid test

Which brand of levothyroxine are you currently taking

Splitting the dose in half (waking and bedtime) is a good idea …..can help

What vitamin supplements are you currently taking

Suggest you get vitamin D tested now

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Have you had thyroid antibodies tested?

Approx how much do you weigh in kilo?

[Bookworm63 in reply to SlowDragon]

Thank you SlowDragon, I'm 67 and weigh 60.78 kg. I'm on vit b complex tablets and vit d spray 1000 iu daily

[Bookworm63 in reply to Bookworm63]

Also I had vitamins tested at the start of taking levo. They said they were all fine but a bit low on vit d and suggest otc daily supplement. I didn't get the results printed at the time as I was new to all this and a bit foggy brained. Of course I would get a printout for myself now. Had antibodies checked at the beginning also and was just you'd they were OK.

[SlowDragon Administrator in reply to Bookworm63]

Vitamin D at 1000iu ….often that’s not a high enough dose for someone on levothyroxine

Many members need 2000iu daily or higher

When was vitamin D last tested

You should test twice a year when supplementing

Might need higher dose in winter than summer

Which vitamin D are you currently taking

If it’s a tablet or gel you swallow it must be minimum 4 hours away from levothyroxine

Are you currently taking any magnesium supplements

Best taken afternoon or evening, at least 4 hours away from levothyroxine

Calm vitality magnesium powder is cheap and easy to use. Very good for constipation. Best start on low dose and increase until get desired effect. Too much can cause diarrhoea

Remember to stop taking vitamin B complex a week before ALL blood tests as biotin can falsely affect test results

Which brand vitamin B complex are you currently taking

60kg x 1.6mcg per kilo suggests that you might need something like 96mcg levothyroxine per day

When we increase dose, it’s common to initially feel a bit “over replaced” for few weeks until new dose settles

[Bookworm63 in reply to SlowDragon]

I'm a bit worried about taking magnesium as a lot of supplements upset my tummy also. I think its the magnesium in the Aristo tablets that's building up in me. I have been very regular whilst on them not really constipated at all. I'm taking Better you vit d spray, vegan version in coconut oil. That seems to be fine. B complex had to be carefully chosen so as to not get side effects and the one that suits most is Kira hormonal balance. I don't think it contains biotin. Will up my daily dose of vit d.

[SlowDragon Administrator in reply to Bookworm63]

Don’t increase vitamin D without testing first

[Bookworm63 in reply to SlowDragon]

Will do and thank you 😊

[greygoose]

About the nausea, bloating, etc. It's probably not the levo, but low stomach acid caused by being hypo. Have a look at this article and try the home test at the end:

healthygut.com/3-tests-for-...

[Bookworm63 in reply to greygoose]

Thank you for this info greygoose, I do suffer from heartburn and I've often thought that my tummy issues could well be related to low stomach acid. I did try having a small amount of apple cider vinegar daily a while back and I did find it beneficial for a while. I was mixing it with honey and after a time I did start to get tummy problems. I couldn't make out if it was the honey or the ACV so I gave up on it. I can't really do the burp test as I can't burp! If a burp comes out of mouth no one is more surprised than me! I sometimes feel if I could it would relieve some of the pressure I feel. I mentioned this time the Dr and she just didn't respond. I think the pharmacist and Dr think I'm nuts! Lol. That's why I'm so grateful to have a forum where people take me seriously and listen.

[greygoose in reply to Bookworm63]

Try taking a large dose of vit C before a meal, see if that helps. Or, you could try putting the ACV in fruit juice, rather than honey. There are always other things one can try.

[Bookworm63 in reply to greygoose]

Thanks greygoose I will definitely give that a go 👍. I've always been a bit nervous about taking supplements etc in the past but I'm learning it doesn't hurt to give anything a try.

[greygoose in reply to Bookworm63]

Certainly vit C can't hurt you. Might even help with constipation if you take enough of it.

[SlowDragon Administrator]

Request GP test full thyroid and vitamin levels

TSH, Ft4 And Ft3 (plus thyroid antibodies if not ever been tested)

Vitamin D, folate, ferritin and B12 tested too

[ragdollcat]

Is that a picture of your cat on your profile picture? If so we have very similar looking cats ! I know it’s off topic but I couldn’t resist. 😻

Cat

[Bookworm63 in reply to ragdollcat]

Oh yeah, that's my little Sprout she's a little sweetheart. Very fluffy! Sometimes call her Princess fluffy knickers 😂. Love cats 🥰

[humanbean]

You've mentioned constipation several times in this thread. It's a common issue on this forum, and I struggle with it myself. One thing I have found is that I can't rely on just one method to deal with it, I have to take multiple things. For example, I know that magnesium citrate helps me, and so does vitamin C. I can't just take one of them though, I have to take both.

How do you deal with it?

[Bookworm63 in reply to humanbean]

I had terrible constipation whilst on the Almus (lactose) tablets and with Teva. Mannitol seemed worse at bunging me up. That's one of things I liked about Aristo they made me very regular and apart from the tummy rumbles and lack of appetite they made me feel quite well. Didn't want to give up on them. They do have magnesium in them. I try to keep supplements at a low level, I just take a b complex and vit d spray. Took two split doses of Aristo last night and this morning and it all went very easily in the loo this morning. That's what I can't understand why do I feel full up as if I am constipated! I think greygoose maybe onto something with the low stomach acid thing.

[Anthea55]

Hi Bookworm, I was also thinking of low stomach acid, but been rather busy today. Just thought you might be interested in this link from Dr Myhill explaining why we need stomach acid and problems which can arise if it's too low. You may find some of your symptoms match those she mentions.

drmyhill.co.uk/wiki/Hypochl...

By the way if a test for low stomach acid mentions 'baking soda' that's American and you need to use 'bicarbonate of soda' in the UK. Test exactly the same.

[Bookworm63 in reply to Anthea55]

Thank you for this Anthea55, I think the low stomach acid may well be the source of the problem also. The baking soda test isn't really a good one for me though as I've never been able to burp! Maybe I can't burp because of low stomach acid?? Who knows? Thank you for the link though 😊

[Anthea55 in reply to Bookworm63]

You could be right about that. Here's another link which seems to be fairly comprehensive.

healthline.com/health/hypoc...

[Bookworm63 in reply to Anthea55]

Thank you Anthea, I'm off to buy some HCL betaine, worth a try.

[Partner20 in reply to Bookworm63]

Have you considered the possibility of gastroparesis, which is low stomach motility. Slow emptying of the stomach can give rise to many unpleasant symptoms such as feelings of fullness and being bloated and constipated, and is not connected to stomach acid levels.

[Bookworm63 in reply to Partner20]

I have often looked at that and that could be a possibility. But I do feel that sometimes I'm not producing enough enzymes before a meal. I've been drinking non alcoholic red wine before my evening meal the last couple of days and I've felt my digestive juices flowing a bit more. I'm not actually constipated at the moment the tablets and the liquid make me poop quite well! It was the other pills with the mannitol in that made me constipated. Will discuss further with the Dr on Friday. Thank you for the suggestion more food for thought.

[Partner20 in reply to Bookworm63]

Mannitol is actually a sugar alcohol, and is found in fruits and veggies including watermelon, cauliflower and butternut squash. You may already have found that some of these foods, particularly if two or three are eaten together, thereby multiplying the effect. Check out mannitol-containing foods to see if this could be an issue for you.