Levythyroxine side affects : Hi I've been taking... - Thyroid UK

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Levythyroxine side affects

Janeylou69 profile image

Hi I've been taking levythyroxine for over a year now , I seem to keep having frequent urinating and frequent bowel movements is this normal , and also I'm hypo ,I'm in the UK am I entitled to claim pip for hypothyroidism ,is it a auto immune condition thanks for any help or advice janey lou

55 Replies

Hi Janeylou69 increased frequency of bowel movements and urination could be signs that your Levothyroxine dose is a little bit too high.

( but of course they could also be signs of umpteen other things)

What dose of Levothyroxine are you taking , and when did you last have a blood test on that dose ?

as for the PIP .. that benefit is not awarded based on having any particular condition, the points are awarded for the things you can't do ... So having a diagnosis of autoimmune hypothyroidism doesn't make it any easier to get it awarded.

Hi i'm taking 100 mg of levo and I had bloods done about a month ago ,my doctor seems to test every 6 months or as and when I ask for them ,I'm worried about it all in case it's something else ,I have 5 kids at home and I don't feel great as it is ,I have low vit d and low iron as well .

I'm also on b12 injections every 3 months .

Hi , yes i was just looking at at your previous posts and saw the '? pernicious anaemia' posts . i noticed you mentioned the over frequent bowel movement in a reply to someone else about 8 months ago..... were you on 100mcg then ? or a lower dose .

Have you always had the same brand of Levo ?... some people are sensitive to different brands.

I wasn't diagnosed with hypothyroid until about 1 year and a half ago and they thought I had pa but i wasnt diagnosed with it in the end and I haven't been on here for quite a while I ,came on here way before I knew I had thyroid problems, I'm really depressed at the moment coz I don't know what is going on with me ,all my muscles are painful especially if I try and pick up my 2 year old twin boys ,it's taking a toll on me ,thanks for your reply xx

Janeylou69 ....Sorry you're struggling so much at the same time as looking after a handful of kids. lots of us here remember exactly how hard it is being newly diagnosed hypo with toddlers . You probably deserve a medal for keeping going with twins.,, (not that you get any choice :) )

Coming here was a good choice, there's lots of very experienced folk here who are friendly and super helpful,... So hopefully , following their advice will get you feeling better than you do now. So don't despair of ever feeling better.

Thyroid hormones are able to work best when B12 . Vit D , folate, ferritin levels are good . So if yours have been rubbish for a long while, that could part of the problem. SeasideSusie is very knowledgeable on how to improve them ., so i'll tag her for you .

And the other thing to check is to find out if your dose of 100mcg is optimal .

If your thyroid hormone levels are not optimal , then you won't feel well even if your results are in the 'normal' range. You GP may well say they are 'normal / fine ', but 'normal' is not the same as 'optimal'~ size 5 shoes are 'normal ' too, but you won't be able to walk very well in them if you are a size 6.

So get hold of your latest thyroid test results from the GP reception, and we can help you understand them .. it 's pretty easy once you know how.

(you are allowed to have them as long as a GP has already seen them ...receptionist may want to ask GP first, but that's just a formality)

Ask for a printout of the latest test results for :

TSH (Thyroid Stimulating Hormone) Result ,and [lab range] .... eg 1.3 [ 0.4 -4.5]

fT4 (free T4/ thyroxine) Result , and [lab range ]..... eg 14 [12-22] ~ this one not have been tested , but hopefully it was.

and ask if fT3 was done too~ very unlikely, but worth asking, you never know )

once you 've got them, post them here , and folk will explain what they mean.

xxx

Tat.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Janeylou69

Janeylou69

If you post your current results/ranges for Vit D, Folate and Ferritin I will be able to comment. As you have B12 injections there is no point in commenting on that.

How do I get my results off my doctor because they only ever say that my iron is low and my vit d is low and I'm really concerned about the loose stools and frequent weeing because it could be a sign of bowel cancer ,I'm freaking out ,I'm so worried as I'm showing all the symptoms of that ,does bowel cancer show up when you have inflammatory markers done ,I'm so depressed now .

SeasideSusie profile image
SeasideSusieAdministrator in reply to Janeylou69

You ask the receptionist, not the doctor (doctors generally don't really like us having them and understanding them). Ring up and say you'd like a print out of the results of xxxx test done on xxxx (date). Doctor has to see results before they can be given to the patient, and the receptionist probably has to get permission from the doctor to pass the results on to you. You are legally entitled to your results without charge or question.

Your surgery may have online access to results to check with receptionist to see if that is offered at your surgery, if it is you'll need to register (I expect you'll need some form of ID) and then you should be able to see results/ranges online.

fiftyone profile image
fiftyone in reply to Janeylou69

Its good if you register to see your test results online. I too take levo and for a number of years I have suffered perhaps 4/5 bowel movements a day. However, if I reduced my levo, felt very ill very quickly.

Recent blood tests showed I was only just within iron and B12 levels. I would not have received any treatment for these deficiencies, because I was 'within range, ' if I hadn't pointed out to my doctor that online historial information showed that both iron and B12 had plummeted over the years and were now only just within the range. Doctors sometimes forget to look at the historical situation. I was immediatley put on iron tablets. I had one B12 jab. Then I had to supply the doctor with NICE recommendations for several B12 boosters to begin with. As a result I now have several jabs booked for a 2 week period. It's crazy, and very worrying, but you have to check up and question doctors all the time.

What is interesting is that since taking iron tablets, my bowels have normalised!! To be honest, I have no idea whether it is the iron tablets or something else completely. Is it just a co-incidence, but I'm down to 2 loo visits a day. I am hoping once I get the B12 boosters and continue with the iron, I will feel energised and 'normal' again.

I also suffer from overactive bladder. There are tablets for this problem, if no serious cause is found.

Iron tablets cause constipation in most people so they have probably stopped the diarheoa.

Nelly91 profile image
Nelly91 in reply to Janeylou69

Taking iron supplementation can give you diarrhea or loose stools, I cannot take iron at all, just on dose and I have to run to the toilet !

I forgot to say I take an antidepressant, venlafaxine as I've struggled with depression and anxiety, panic attacks

SeasideSusie profile image
SeasideSusieAdministrator

Janeylou69

I seem to keep having frequent urinating and frequent bowel movements is this normal

Do you always get the same brand of Levo?

Do these symptoms come and go or are they permanent?

Have you discussed with your GP, there may be many reasons for the symptoms.

I'm in the UK am I entitled to claim pip for hypothyroidism ,is it a auto immune condition

It's not the actual diagnosis that entitles you to PIP, it's how your condition affects you.

Are you optimally medicated? If so you may be one of many people with hypothyroidism, autoimmune or not, who lead perfectly normal lives, others don't. Check out eligibility here:

gov.uk/pip

It seems to come on gradually but it's now everyday ,and yes it's the same brand of levo and my blood tests were ok apart from low iron and low vit d ,which the doctor has asked me to do a stool test to see if I have a bleed in the gi but nothing has pointed to this ,I think it's just to rule it out because I've had low iron or low ferritin for years .

SlowDragon profile image
SlowDragonAdministrator in reply to Janeylou69

my blood tests were ok apart from low iron and low vit d

Low vitamin levels suggests your levothyroxine dose may not be high enough

Important to test folate and B12 too

How much levothyroxine are you currently taking

How long have you been on this dose

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

How much vitamin D are you currently taking

Common to need to supplement vitamin D continuously

Test twice year when supplementing

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Can take many months to improve low iron and ferritin

How low was ferritin

How much iron are you prescribed

Taking iron with orange juice for vitamin C

Important to take iron at least 4 hours away from levothyroxine and 2 hours away from vitamin D

Vitamin D also needs to be four hours away from levothyroxine

SlowDragon profile image
SlowDragonAdministrator

Request GP do coeliac blood test

And a test for UTI

Urinary track infections are extremely common generally, but especially when hypothyroid

About 80% of autoimmune thyroid patients find gluten free diet helps or is essential…..but important to rule out coeliac disease first by testing

Thank you for your reply ,I'm really worried about all this ,it's driving me mad ,I just hope it's nothing serious ,I will definately get my doctor to do these tests it's all too stressful thank you from Janey lou .

Janeylou69 so sorry you’re going through a tough time with your health just when you need to be feeling good with your children being so young. I’ve got nothing to add to the great suggestions here except don’t be hesitant asking friends, family and health professionals (eg health visitor) for support. There are lots of organisations for parents that can help too. PM me if you’d like me to put you in touch.

PIP should not be claimed unless hyper or hypo are drastically affecting your life. Like for example you are unable to work due to symptoms, you can only work part time due to symptoms etc.

The fatigue for me even with my levels ok and on medication, is crippling. But I also have other health problems that contribute to this.

HiPIP is not an out of work benefit, people working full time can claim it, its not means tested and helps with the extra costs of being disabled. Like if you need a special diet, transport costs, or help with daily care or shopping. ESA is a benefit for those too ill to work.

Yes I am aware I claim ESA and PIP as I have PoTs that causes me to be house bound. Sorry my description of why you can claim wasn’t very clear. Yours makes sense

I'm so sorry you are having problems,especially looking after your children at the same time. It may not be relevant, but I had bowel problems for 16 years. Improved slightly once I upped my B12 injections myself, and again improved on levothyroxine. What resolved it though was going lactose free last year. I use lactose- free milk and avoid milk products and it was like night and day. Bloating, stomach pain, dizziness, terrible bowels and often loss of control of them , all gone. I have lactose-free levo now too . I did try gluten-free for over two years but it did not help me. We are all different and I hope you can get this resolved. Thinking of you as I know it must be hard keeping going when you are not 100%.

Please speak to your GP about your bowel and urine symptoms without delay if you haven’t already done so. They do need to rule out things like cancer and you may need specific investigations for that, not just blood tests. The low iron may or may not be related to that too.Also, if you have low iron you will be struggling in a lot of ways - it affects all our metabolic processes - so that does need addressed. One ferrous fumarate every second day is the protocol now though it hasn’t filtered down to many GPs yet (your body can only absorb a specific small amount per day).

Agree you need a Coeliac test - don’t stop eating gluten before it or you can get a false negative.

Hopefully it’s nothing serious but you need to bang on your GP’s door until you have an answer.

Janeylou69 profile image
Janeylou69 in reply to csj113

Hi csj113 I'm doing a fit test ,my doctor already asked me to do one because I've low iron ,and to rule it out ,I'm worrying a lot and it's only recently that I've noticed that something wasn't quite right ,I'm also late for my b12 injection x

Hi Janeylou69

So sorry you are having such a bad time and coping with a young family. I just have one thing to add to all the helpful advise you have been given.A particular brand of levothyroxine. Boots Almus has those side effects for me. I cannot tolerate it it is very unpleasant.

Maybe something to consider.

Hope you start to feel better soon xxx

Hi, I get Pip , I'm on levothyroxine ( 125mcg) daily. Pip isnt for the illness, disability its for what you can or cannot do. Previously I applied for pip for my under active thyroid, I was refused. My pip is more for my bleeding issues and fibroid. Hope this is of some help

Hi Janeylou 69 loose bowels and frequent urination are all symptoms of low b12. Check out PA on health unlocked . Hope you feel better soon with your increased injections.

How low is your vitD? Ask your GP to test vitD in the same draw as calcium, phosphorous and PTH (parathyroid hormone). I have Hashimoto's thyroiditis since 2002 but became very ill in 2019. Subsequent tests for everything resulted in a high calcium, low phosphorous and low vitD with a diagnosis of hyperparathyroidism. However, my iron and ferritin were high but that was a side issue. Like you, I felt rubbish - fatigue, aches, irritable bowel and urinated a lot. I was also very thirsty. I was medically supplemented with vitamin D3 which helped. Now waiting for an operation to remove a retrosternal goitre and rogue parathyroid gland which might be inside or the cause of the goitre.

How are your zinc levels? (When mine are off I have the same issue).

Janeylou69 profile image
Janeylou69 in reply to Jesstuo

Hi jesstuo whenever I've had blood tests nothing has ever come up about my zinc levels so I'm hoping they are ok because my doctor hasn't given me anything for that vitamin thanks .

I recommend Mayo Clinic's site here in the U.S.A. for a good reference and read the whole area you are questioning . I have found stuff I only found buried DEEP in the FDA site. When you are dealing with any hormone it doesn't take much one way or another and before long you can feel like a cat chasing her tail ! And not feeling well on top of it it becomes a vicious cycle. Good luck to you been on that roller coaster!

Painful muscles are indicative of rheumatoid arthritis or other inflammatory arthritis. It is classed as an autoimmune disease like pernicious anemia and underactive thyroid. You are more likely to get PIP for that because it causes physical disability.

You will find a helpful guide to claiming PIP in The Guardian newspaper archives. If I can find a link, I will send it. People are awarded points depending on what they can and cannot do. The main points scorer is not being able to walk far or use you shoulders but a few are awarded for disability in the hands and mental incapacity - you would possibly get the mental incapacity with a thyroid issue eg not being able to work out a journey or getting confused. You need a score of 28, from memory, to get the lower level. There are two levels.

Do the sore muscles cause disability, ie difficulty dressing, picking things up, opening windows, hanging up clothes, washing your hair/showering? Also do you have any disability in the hands such as dropping things, turning keys, pouring a cup of tea, turning taps on/off? These are good indicators of rheumatoid arthritis which affects the tendons and thereby muscles as much as the joints.

Hi Janeylou69. I too am going to the loo frequently. I'm 51 and thought it might be where I'm getting older. I've been on levothyroxine for nearly 8 weeks, have also been feeling down as it can be so overwhelming dealing with symptoms. Having little ones to take care of when not feeling good is super hard. I've started taking vitamin supplements to help me feel better. A magnesium combination, Vitamin B-Complex, Zinc and Vitamin D. Omega 3 and I'm going to try CBD oil. I'm not very experienced myself with thyroid stuff yet as it's new diagnosis for me. Lots of people on here are though. I hope you feel better soon hun x

Hi Alicesmother I'm not sure what colour they are ,what colour should stools be ,I have tenderness .

Mine are normally shades of brown, they are only pale ,if I eat something milky thanks for replying .

nellie237 profile image
nellie237 in reply to Janeylou69

Hi Janeylou,

I don't think that milky things cause pale stools...........but it is the most obvious symptom for coeliac. When first diagnosed with coeliac a large % are lactose intolerant, which may explain why it is more apparent when you ingest milky things. Has your GP tested you for coeliac? and Folate?

I feel for you, you must be feeling horrendous., but it will get better. 😊

NB. I was dx Hashi's in 2007 & tested negative for coeliac then, but +++ positive in 2020. Unfortunately the testing isn't always accurate.

I'm just concerned and you've been really helpful alicesmother thank you xx

😂😂😂, there’s no pip for hypothyroidism. Get/ stay working.

tattybogle profile image
tattybogle in reply to Mino40

Not a very kind or understanding response Mino40, i notice you said you felt amazing after just a few months on levo. But this is not the case for everyone .

Hi tattybogle I've noticed something else as well ,my muscles are really weak and when I walk anywhere ,I'm tender and painful all over which makes it difficult to move about and do everyday things ,and my keg muscles seem to be stiff all the time, I also get cramp in my legs which isn't often ,I've had tests but they don't seem to find anything so a couple of years ago I went to the hospital for tests and they said it could be fibromalgia ,which there's no test for ,have you any ideas what it could be thanks.

magnesium can be helpful for cramps... i forget which form is best, there are several and they have different effects. greygoose , SeasideSusie or SlowDragon may be able to advise better than me.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Janeylou69

Janeylou69

The best form of magnesium is the one that suits you, the different forms help with different conditions so check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

I take two different forms of magnesium, both of which suit what I need them for. However, even though I take a good dose of magnesium daily I still occasionally get cramp in my feet at night. When this happens, for immediate relief I use New Era MagPhos fastmelts and Better You topical magnesium gel rubbed into the affected area, cramp goes within a few minutes.

Have you any idea why we get cramps ,and does magnesium interfere with iron tablets at all coz I take throid in the morning then I've started to take a vit d 4 hours after that and then in the afternoon I take an iron tablet thanks for your help .

SeasideSusie profile image
SeasideSusieAdministrator in reply to Janeylou69

Janeylou69

There's lots of causes of cramp, Google search will point you in the right direction.

Iron should not be taken with anything else other than Vit C which helps absorption of iron, it must be taken at least 2 hours away from any other supplements and medication (although 4 hours away from thyroid meds is recommended).

Magnesium tends to be calming so it's probably best taken at night as you don't want it making you sleepy in the daytime. I take one form of magnesium with my evening meal and the other form before bed.

Thank you seaside susie, I will look it up .

greygoose profile image
greygoose in reply to tattybogle

I think Mino40 was being ironic. :(

tattybogle profile image
tattybogle in reply to greygoose

oh duh .. didn't think of that ;) got a bit of a chip on my shoulder ....... if you were being ironic Mino40 , i apologise.

greygoose profile image
greygoose in reply to tattybogle

Yeah, I know what you mean. I wonder if shoulder chips are a hypo symptom?

tattybogle profile image
tattybogle in reply to greygoose

i think they're 'secondary' chips, (caused by interaction with medical profession attitudes ) ..... also pretty sure "galloping cynicism" is a secondary :)

greygoose profile image
greygoose in reply to tattybogle

You could well be right! :)

Thank you for posting, I have shared urine and bowel frequency, as well as hypothyroidism. It is reassuring to know I am not alone. In my case I think bowel frequency was increased from a laxative my doctor had trialed me on for possible hemorrhoids. I played with adjusting my fiber intake to slow my movements down. Drinking mineral water I think helped me with urine frequency, but it is likely a placebo effect in my case.

I wanted to mention that my mother had five children too and her doctor told her that her bones had decalcified carrying us. As you mentioned you had twins, it made me wonder if some of your aching could be due to the heavier calcium loss of carrying twins.

I too share your worries to in regards to rectal red flags. I hope you get through any future appointments with no issues.

Janeylou69 profile image
Janeylou69 in reply to Clarrisa

Hi clarrisa it's really worrying for me which puts me in a really dark depressing place , thank you, did you ever lose any weight through going to the toilet more frequently xx

I share worrying daily, and mood dampening. Yes, earlier on I lost considerable weight, but believe my circumstances differ from yours: I had been taking a combo of Tirosint & Synthroid daily after being offered a trial of Tirosint for absorption problems. I went gluten free, and even FODMAP for a spell. I took a food allergy test and stopped eating a few foods afterward. I also switched my supplements to some designed to absorb optimally ( I had self paid for vitamin labs & found out what I was low in. I had a H. pylori test too). I avoid high oxalate foods.

I believe over time my absorption of Synthroid did improved. However I progressively lost weight while on Tirosint and had to discontinue it in order to gain weight back. Over this time I worked with a registered Dietitian and have had no problem regaining lost weight post Tirosint use, in fact I am going the opposite direction and need to watch my weight now. I did notice that while working with a Dietitian that it was difficult to regain weight whenever I was dairy free.

A gastrointestinal doctor suggested diverticulitis, a fiber supplement, & to return in six months. I have a screening interview with a nurse pending, in order to see a Proctologist (These doctors are "specialized" in the States). I think dehydration from Tirosint, as my absorption of Synthroid improved (after going gluten free) lead to some straining and a hemorrhoid or two. My Internist recommended a fiber supplement also & sitz baths twice a day. I have had a colonoscopy within the last five years so I requested the Proctologist route.

Support from a counselor or alternative health practitioner can help steady the nerves. I find as I age I have to be increasingly more selective with what I eat. I wish you luck in sorting out whatever upsetting your system.

Hi as you are taking Iron you need to make sure that other minerals are kept in balance because one can deplete another , iron, copper and zinc should be kept in balance. I read somewhere that copper deficiency can cause frequent urination. Ask Gp to test levels because one can throw the others out but too much of any of them is as bad as not enough.

I have maintained my levels by taking dessicated beef heart supplements and dessicated liver supplements as I can't face cooking and eating those organ meats. I don't take them everyday just a couple of times a week alternating. they have a good ration of vitamins and minerals so please do you research on them and talk to Gp.

Some people who are vegans would find this difficult to come to terms with so I hope I have not grossed you out but Organ Meats such as heart and liver are powerhouses for nutrition.

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