Affects of taking levo

[birkie]

Hi everyone ❤️

I've been reading some posts on here about people having trouble taking their prescribed medication for their thyroid conditions, concerning stomach and gut problems. I had total thyroidectomy in 2019 and struggled with the T4 I had stomach and bad gut problems acid wash back cramps very loose bowels and vomiting, my blood tests showed no improvement in my TSH, T3 T4. My surgeon changed me to other brands but I was still the same after 8 months and still feeling so unwell I noted the ingredients contained lactose!! I knew I was lactose intolorent so I mentioned this to my endo who poo pooed it but my bloods showed no improvement, well they wouldn't because I was either throwing it back or it was going straight through me. I've now got trouble with my parathyroid glands and have a new endo he noted my trouble with levo containing lactose I told him it did not agree with me I told him i have colitis to, to my amazement he said he did not agree with me and that their is so little lactose in the fillers it could not upset the gut and stomach, he said its all symptomatic, they did a test with patients some had the real drug some had a sugar one he said the test showed it was more symptomatic than anything to do with the fillers, I just wondered how many of those test mice) 🙄 had ongoing stomach and gut problems? And is everyone on here who has had problems with taking their medication symptomatic? I think not it's real and indeed awful symptoms if the medication does not agree with our bodies. I'm so miffed off that endo/GPS label everyone under one umbrella... I spoke to my doctor yesterday as she needed 2 water samples she looked at my last blood work and said your bloods are all in range.. I just looked at her and said"in range for who" my T3 is still to low as is my T4 and by the way doctor I have no thyroid!! I'm now on T4 lactose free with 20mg of T3 but the new endo wants me to ween me of these slowly I'll give it a go as nothing can be as bad as they are now!!!

Hope everyone is ok❤️❤️

[fuchsia-pink]

Well we all know that hypos are mostly silly hysterical women with no common sense so it's highly likely that so many just invent feeling bad when they "imagine" the fillers in their levo [be it mannitol or lactose] disagree with them [eye roll]

In exactly the same way, many endos will say that there is no evidence that taking lio helps people. When lots of us pop up and say actually it's made a big difference to me, we're told that's "anecdotal" not "research".

Personally, I'd not want to be left alone with an endo who took me off lio - but hope you find meds that work for you x

[birkie in reply to fuchsia-pink]

Hi fuchsia-pink❤️

Yeah I feel consultants and gp treat women has loonys especially if your also going through the menupause. Women doctors are no better just goes to show their bound by rules and not by getting their patients well, I'm not well liked by my surgery because I ask loads of questions corect them when I know their wrong ask for print outs of my blood work, they look at you as if to say how will you inturprit the information on them... Well I can thanks to this site!! If GPS and consultants just took note of how bad their patients are and really tried to make them well the NHS would save millions.. I'm only willing to give this a trial being on T4 but if I see no change after the 6 weeks blood test believe me the new endo will hear me roar I've had enough.. Nearly over 3 years trying to get diagnosed with graves 8 months on meds which made me worse and now my parathyroid glands have Gone overactive with high calcium levels... Its heartbreaking 😔

[SlowDragon Administrator]

What happened to being on just T3?

How much levothyroxine are you currently taking?

Article about malabsorption issues

academic.oup.com/edrv/artic...

Are you on absolutely strictly dairy free diet

What vitamin supplements are you currently taking

Are you gluten free?

[birkie in reply to SlowDragon]

Hi slowdragon ❤️

I'm still on T3 just been given T4 lactose free 100mg I've just taken my first one this morning with 10mg of T3.. Consultant wants to ween me off T3.. I'm also now on 800IU vegan pro vitamin D after telling my gp I was vitamin D deficient 🙄 consultant agreed and gave me the 800IU..one capsule daily.. I don't do dairy as I'm lactose intolerant so avoid that stuff.. Seen gp yesterday she's arranged for me to have a camera down the throat because I've been having acid wash back bad pain between my shoulders a bad pain in my throat and ear🤷‍♀️ so don't know if absorbtion as anything to do with this, but I know hyperparathiyroidism upsets the gut and stomach so cud be that to.. I'm under a parathyroid specialist who's taken over my case.. 🤷‍♀️.. In limbo with that just waiting on bloods coming back🙄

Thanks for the reply slowdragon always appreciated ❤️❤️

[SlowDragon Administrator in reply to birkie]

I've been having acid wash back bad pain between my shoulders a bad pain in my throat and ear

That’s acid reflux....extremely common hypothyroid symptom...

What was your most recent Ft3 result?

Why vegan Vitamin D?

Are you vegan?

Are you currently taking any B12, vitamin B complex?

What’s most recent B12, folate and ferritin levels?

[birkie in reply to SlowDragon]

Hi❤️

My latest results

TSH.. 1.28..range..0.30-4.50mU/L

T3..3.5..range..3.10-6.80pmol/L

T4..1.8..range..11.00-22.00pmol/L

Ferritin 26 ug/L..range.. 23.00-400.00ug/L

Folate 2.8 ug/L.. Range.. > 2.50ug/L

B12..310 ng/L range.. 197.00..771.00 ng/L

They gave me vegan vitamin D because of lactose intolerant 🤷‍♀️🤷‍♀️

[SlowDragon Administrator in reply to birkie]

How much T3 are you currently taking

Did you take last 1/3rd of daily dose 8-12 hours before test?

All vitamins are far too low.....BECAUSE You are under medicated

No Vitamin D result?

You could use Vitamin D mouth spray by Better You. Frequently easier to absorb and doesn’t require to be 4 hours away from taking T3

How much vitamin D are you currently taking

[SlowDragon Administrator in reply to birkie]

Ferritin 26 ug/L..range.. 23.00-400.00ug/L

Folate 2.8 ug/L.. Range.. > 2.50ug/L

B12..310 ng/L range.. 197.00..771.00 ng/L

So are you currently taking any B vitamins?

Looking to improve B12 to at least over 500

Folate at least over ten

Ferritin at least over 70

Have you had full iron panel test for anaemia?

Never supplement iron without doing full iron panel test for anaemia first

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to birkie]

Low B12 and folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Igennus is lactose free

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With such low B12 result taking a B12 supplement and a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

cytoplan.co.uk/vitamins/vit...

Or

jarrow.com/product/58/Methy...

[birkie in reply to SlowDragon]

Hi

Thanks for that info slowdragon I've told my gp my vit and minerals are off I'm wanting vit B injections my friend gets them from her surgery.. She has no problem with her thyroid she gets them because they are low so with all this going on with me at the moment I'm in the process of writing down my vits and minerals to show my new consultant, he got me the vitamin D eventhough my gp refused them saying I was OK.. Going of my last test in Feb this year.. So hopefully he can help me with at least some of them so I can get them on my prescription 👍

[SlowDragon Administrator in reply to birkie]

February is rather long while ago

They need retesting

[SeasideSusie Remembering]

birkie

I knew I was lactose intolorent so I mentioned this to my endo who poo pooed it ................ to my amazement he said he did not agree with me and that their is so little lactose in the fillers it could not upset the gut and stomach, he said its all symptomatic

In that case wonder if your endo could explain why pharmaceutical companies go to the trouble of making lactose free medications?

[helvella Administrator in reply to SeasideSusie]

I'd be interested to know just how much lactose he would accept could cause a problem!

It has long appeared to me that there is something specific about levothyroxine and lactose. People who have never previously had lactose issues (that they have noticed), maybe even take multiple other medicines which contain lactose (not at the same time as their levothyroxine, of course), and consume foods which contain lactose, suffer when taking levothyroxine which is formulated with lactose.

And if you need multiple tablets, as many of us need to, the amount goes up!

[birkie in reply to helvella]

Hi

Yes I agree with you ❤️ my lactose intolerance was kept in check until I had total thyroidectomy in 2019 and put on 150mg levo T4.. Had 8 months of sheer hell... I constantly told my consultant and gp it was the T4... Deaf ears... Then I took myself of it for a week dangerous I know, but I needed to see if my symptoms would cease they did.. Went back on they started again.. Since being on lactose free I've not had runny bowles or any cramping or sickly feelings.. So I was right.. 👍

[birkie in reply to SeasideSusie]

Hi seasidesusie ❤️

Exactly not everyone who takes T4 or T3 can stomach it.. I had a allergic test recently and told the nurse the only one that will show up is lactose!! She said "well let's not get ahead of ourselves" what showed up.... Lactose!!! I also have colitis... Its criminal how were treated by so called professional people 😠 who can't see the bleeding odvious 😠

[SlowDragon Administrator]

After years on this forum, I think often lactose intolerance or gluten intolerance are present BEFORE we start on levothyroxine....but either or both get significantly worse as soon as levothyroxine is prescribed...perhaps because Ft3 levels almost always drop

Low Ft3 almost always leads to low stomach acid.

Low stomach acid leads to acid reflux and low vitamins

Then it’s chicken and egg....low vitamin levels makes levothyroxine work less well....so Ft3 drops further....

Further drop in Ft3 lowers stomach acid further etc etc ....spiral downwards into severe illness.....often with apparently “normal” TSH

Endocrinologists rarely remotely interested in gut issues or low vitamin levels

Your new endocrinologist sounds extremely dubious

I found as soon as I started on levothyroxine, I suddenly had loads of watery, extremely itchy blisters all over my feet. GP was at a loss to cause. I now know that itchy blisters are a common sign for gluten intolerance. Unfortunately took 26 years on levothyroxine before joining here and seeing just how common gluten intolerance was, before I had endoscopy and severe gluten intolerance was confirmed. Going strictly gluten free was a revelation

[birkie in reply to SlowDragon]

Hi slowdragon ❤️

Like you said.. I was lactose intolerant before I was even diagnosed with hyperthyroidism (graves) so when all these symptoms came back I knew it was something to do with the T4 I was taking, of course GPS and endos don't as you say connect it... Beats my why?.. But the most annoying thing was he wrote a letter to my gp for which I requested a copy he wrote... "she says she is lactose intolerant" but I see no evidence of this😠 for goodness sake I had an allergy test over a month ago for ENT.. Which showed quite clearly LACTOSE!! I even told the nurse it would show up,, just shows they don't read in to your records much😠.. I'm only giving this endo a trial because he is treating me for my parathyroid problem.. So pooling parathyroid / and my ongoing thyroid medication together.. I'm having second thoughts on this, but if he does not do the job right I will seek another endo until they do get it right... Also trying to get anything sorted in this awful climate is impossible 😠 I will say my new endo has been on the ball with my parathyroid problem he has told my gp to organise a bone scan and a kidney scan he has also done a genetic test with my urine and I've doing 2 more on Monday.. He sent this info to my surgery on the 7th of sep I was still waiting on the 17th for word I rang up to ask what was going on.. To be told the doctor has only just seen the letter and as for the scans... Well theirs a waiting list because of covid 🤔 so just have to play the waiting game for them.. 😠😠

[SlowDragon Administrator]

Links about lactose intolerance and thyroid disease

livestrong.com/article/1372...

endocrineweb.com/conditions...

If you have lactose intolerance, even the small amount of lactose contained in pills, in cumulative combination with small amounts from food or medication, may be enough to cause discomfort.

read.qxmd.com/read/24796930...

[SlowDragon Administrator]

And these articles pubmed.ncbi.nlm.nih.gov/229...

academic.oup.com/jcem/artic...

Recently, in fact, it has been proven that lactose-containing medications may contribute to intestinal symptoms in patients with LI

nejm.org/doi/full/10.1056/N...

These data support the hypothesis that gastric acid secretion is necessary for the effective absorption of oral thyroxine.