I received some insight about this on my last post (super grateful for the responses!) but am still currently lamenting a bit over my situation. My last post was a bit more general, and it was through that post that I determined that it is very likely that I am being under/incorrectly medicated, since I'm on 200mcg of Levothyroxine with a TSH of 4.00 (hence the persistent hypo symptoms). I have been on Levo for a year.
That being said, my worst symptom is almost definitely the bloating (and possible water retention?). I am bloated constantly, to the point where i can't see my feet when I look down while standing up straight. I look about 4 months pregnant, and there's no point in the day when my belly becomes less swollen. The thing is, I don't have a gluten intolerance or coeliac. Could this be the work of the Levothyroxine? Or is it purely because I am undermedicated? I woke up out of my sleep this morning at around 4am due to back pain because of this issue, so I came here to hopefully look for some more answers.
I've had this issue for about as long as I've been taking Levo, but all the GPs I've seen have shot down any possible connection, instead opting to prescribe me every different kind of laxative you can think of (with zero success).
I'm wary to self medicate on NDT, but I can't get any help from a doctor until the current situation has calmed down. I am also unsure of how much more of this I can take, or if the NDT will even solve the issue...has anyone else experienced this and gone back to normal being off Levo?
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lau99
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Lau To fully understand whether you would benefit from ndt or the addition of t3 to the levo, you need to know your exact levels of tsh, ft4 and Ft3. You need to see where ft4 and Ft3 are in their ranges and in relationship to each other. You also need to ensure that all vitamins are well over half way through their ranges.
Thank you for the response. Editing my message as I have been reminded that I can still get a private finger prick test! I will try to get my hands on one and see where I'm at.
Are you constipated? If not, there's not much point in taking laxatives. And, if you are constipated, you'd be better off taking magnesium citrate, because at least then the magnesium would be doing you some good.
But, of course doctors shoot down the idea that there's any possible connection with hypo, because they have no idea! They know nothing about symptoms.
As for self-medicating with NDT, it's wouldn't be a very good idea to do that without full thyroid testing so that you know exactly what you're dealing with. You could still get a private test done, despite the current situation, if you use a finger-prick test.
Have you tried gluten-free? I believe that helps a lot of people with bloating.
Not anymore; I think the constipation came from being even more hypo back when I was prescribed only 100mcg (TSH was 14.40). I stayed that way for a long time (maybe 8ish months?) but it seemed to improve a few months after I went up to 200mcg. The laxatives never worked sufficiently, but my GP just kept prescribing me more and more, i guess hoping that one would work. I was starting to worry that taking them all the time for months on end was going to make me dependent on them, so I stopped.
I think I will definitely have to order a private test then! I tried gluten free, but perhaps not for long enough...
Thank you for the reply. I was told by my GP that gluten intolerance was unlikely since the problem only started to crop up after my thyroidectomy, so I was only going off of that. It could still be the case that I am intolerant? I will explore the option of trying gluten free for longer than I have previously.
I never had water retention until after I had my thyroid removed and now its a constant battle.....I get so bad I feel like my body sloshes when I move. I did have all other reasons for water retention ruled out and now I take a water pill when it gets bad it helps.
I wish a doctor could figure it out.....but I do wonder if low body temperature from hypothyroidism or a combo of no thyroid,low body temp and menopause cause this..
Are you lactose intolerant? When there’s too much of lactose as a filler, it really bloats me. That could be it.
I once reacted very badly to Euthyrox (a brand of levothyroxine) because it contained too much lactose for me and I’m not even extremely lactose intolerant.
In the UK, Teva and Aristo levothyroxine are lactose-free.
UK Levothyroxine Tablets
➖➖➖➖➖➖➖➖➖➖➖➖➖➖
Last updated 13/04/2020.
This is a list of currently marketed levothyroxine tablets in the UK.
Please note that re-branding (whether by a manufacturer or as an ‘own label supplier’ - which has happened with several products) does not mean any change to formulation.
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🔹 Accord – formerly Actavis (manufacturer)
50
100
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🔹 Advanz – branded both “Mercury Pharma Levothyroxine” and “Mercury Pharma Eltroxin” which are identical (manufacturer)
25
50
100
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🔸 Almus – (an ‘own label supplier’ brand owned by Walgreen Boots Alliance – Boots pharmacies and Alliance distributor)
50 – This is repackaged Accord – formerly Actavis.
100 – This is repackaged Accord – formerly Actavis.
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🔹 Aristo – (manufacturer)
100
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🔸 Northstar – (an ‘own label supplier’ brand owned by McKesson – Lloyds pharmacies and AAH distributor)
25 – This is repackaged Teva. ❗
50 – This is repackaged Accord – formerly Actavis. ❗
100 – This is repackaged Accord – formerly Actavis. ❗
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🔹 Teva – (manufacturer)
12.5
25
50
75
100
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🔹 Wockhardt – (manufacturer)
25
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🔹 – identifies manufacturers.
🔸 – identifies ‘own label supplier’ products.
❗ – Take particular note of the actual product which varies by dosage.
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Numbers refer to tablet dosages in micrograms.
If there is anything inaccurate in this information, please let me know by Private Message:
hmm I don't think I am lactose intolerant....maybe slightly? But I guess even 'slightly' might be enough to give me a reaction considering I'm taking quite a bit of this stuff every single day...Thank you for this suggestion in these times it'd probably be my easiest way of potentially improving my symptoms if I can just ask to be given a different brand at the pharmacy!
The oddity is that we see so many people who have always consumed lactose (e.g. drink milk and consume other dairy products) without problem. But when they take levothyroxine with lactose in it, they feel awful. Sometimes they even take other lactose-containing medicines (at different times of day) without any obvious issues!
I do not have an explanation but this is how it appears from reading here.
That is strange indeed...I personally love cheese and milk! It very seldom ever gives me any problems, and never like the bloating I have currently. What gets me is that, if it was being caused solely by my diet, wouldn't my bloating be lessened or at least have gone down by the morning since my food would be digested? I am suspecting the Levothyroxine because it is always in my system, and thus the bloating is always there...very strange
“Dried, condensed, and evaporated milk products usually contain high percentages of lactose compared with fluid whole or skim milk (Table 8). Nonfat dry milk ranges from 50.4 to 52.3% lactose whereas dry whole milk, with a higher fat content, ranges from 35.9 (332) to 38. 1% (322) in lactose content.”
Also, who knows how pharmaceutical companies store their products. I would imagine many store them in a humid/warm & stuffy environment which affects fillers like dried milk powder, making them funky and less easy to digest. They’re supposed to store them in a low humidity, cool environment but I highly doubt that most of them do.
I think the pharmaceutical companies use very high purity lactose with almost undetectable levels of fats or proteins. A while ago, I was reading about dairy intolerance and that for some who are sensitive to milk protein, commercial pharmacautical standard lactose is perfectly OK.
I suspect that they do control the humidity very carefully as it will make their lives easier - the last thing they want is for batches to fail quality control or external checking. I think that would be very much more likely if they used claggy lactose.
There again, I don't work in the industry, and I have never been invited in to watch the process!
To each their own. I find it very hard to believe they care to use such high quality ingredients or manage their product storage/warehouses so efficiently. It has been pretty obvious to many people that pharmaceutical companies are no longer living up to their initial standards of business ethics. It is all about making profit now and they will go so far as to blame patients rather than own up to their misdeeds.
I actually visited a Boots warehouse when I worked in a hospital pharmacy and was surprised how dusty it was. When any drugs arrived from them the pharmacy assistants would have to wipe them over before putting them in the store room. This was in the late 80s so hopefully things are not as dusty now.
The warehouse was massive so I think they stockpile a large amount of drugs in there and I think that is why it was so dusty. I was quite shocked to be honest.
Hi there. I had similar to you, and was also taking quite high dose Levo and was still undermedicated. From yourTSH at 4.00, with 200mcg Levo I suspect you are not absorbing foods or meds properly as you would expect on that dose to have a suppressed TSH. The bloating I had was constant, and same -I had back pain.
Turned out I had a bacterial problem in my intestines, and 2 things were happening :1) The bacteria were producing a lot of gas, and inflammation, causing the bloating, and 2) the little buggers were nicking my nutrients and thyroid meds. I thought it was a problem with the brand of Levo- I got the same problem with NDT as well.
I was getting food reactions (dairy,soy,chocolate, coffee) which all caused worse than normal bloating and made me feel crap.
These have all gone now. I'm also on a reduced dose of NDT and am over the hypo symptoms. I'm a biochemist, so everything I did was self researched and treated.
I took a Genova diagnostics stool test ,which is what picked up my bacterial problem.
I then took a course of Dysbiocide and FC Cidal ( its a strong herbal Small Intestinal Bacterial Overgrowth treatment as an effective alternative to anitbiotics) ncbi.nlm.nih.gov/pmc/articl..., followed by a 7 day round of very high strength probiotics (elixa-probiotic.com/uk/) to rebalance my bacteria.
Bloating gone, absorption problems gone, managed to reduce the NDT dose, back pain gone,all food intolerances gone.
May help you, maybe not, I spent a year in declining health due to the lack of absorption( I ended up deficient on Iodine, Selenium,Vit D, Iron as well due to this - all of which can affect thyroid too and are all now OK again) and wouldn't wish it on anyone.
Its a bit odd that it started when you started Levo though - in my case, I had several things happen close together: upper respiratory infection and which then led to thyroiditis, and I picked up a Giardia bug in my stomach from cross country field running.
why did you start Levo? Was there some trigger for this?
One thing which might help is to get FT4,FT3 and your TSH tested, which will show whether you're absorbing the Levo or not. Would have to be Medichecks most likely , NHS are not easy to persuade on testing for this!
One thought is that some Levo contains lactose, which you might be struggling with. If you can't get a Levo medication without it, then you could try taking a lactase enzyme pill with your Levo, to help with the absorption and prevent irritation.
Finally( sorry this is is turning out to be a bit war and peace!!) hypo people often get bloating because their digestion and stomach acid secretion is slowed vs normal. Food then leaves the stomach not broken down enough. This can cause bloating and gas from fermentation in the intestines rather than enzymic breakdown. Digestive enzymes(available at Amazon) can help,taken with meals.
Thank you so much for such an in-depth response! Our situations look nearly identical in some ways, too. I also thought about a month ago that I may have been dealing with SIBO from having been constipated for so long (sorry, a bit TMI!) while doctors refused to increase my Levothyroxine dose, before finally settling at 200mcg. For this, I went on 2 weeks with a semi-elemental diet as I was struggling to function at uni on the full elemental diet. My bloating went down while I was on it, but came back shortly after I stopped. Now that I am quarantining at home with no work to do, I may try the full elemental diet this time. Alongside this, I also took Neem and Oregano oil supplements to try and kill any remaining bacteria. Recently I did a 3 week course of Alflorex as well, but it didn't do anything for my bloating, only helped in going to the bathroom.
I started taking Levothyroxine immediately after having a total thyroidectomy due to treatment-resistant Grave's disease, which I've had for about 4 years now. I will definitely look into trying the supplements you have listed. My GP is historically quite good at testing for T3, T4 and TSH, as I used to have all these levels routinely tested when I had an overactive thyroid. This may not be the case anymore since they don't think anything is wrong with me...so I may have to get a private test after all.
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
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