Hi, does anyone else suffer with this? I have seen from googling this that some people have in the past and wondered if anyone found a solution. I finally feel good but I just can't stand the bloating. Not sure if its just the activias/accord brand that does it but Teva makes me really ill and Murcury Pharma makes me feel anxious, I just can't win!
Can anyone offer any help or advise please?
Have you had FULL thyroid and vitamin testing recently
See you are on levothyroxine plus T3
Please Add any results you have
Previous post
healthunlocked.com/thyroidu...
Are you now on gluten free diet, and has it helped at all?
I had full thyroid and and vitamins done with medicheck a few weeks ago, I am a bit under active and B12, Vit D and Folate were on the low side so have brought the igennus b complex as everyone raves about it (was previously just taking supermarket branded B complex) and still taking Vit D) I have given up with T3 as trying to get hold of the brand I can take is impossible so I have up'd my levo to 125mcg again, the more I increase the worse the bloat gets. The bloat only started when I stared on levothyroxine after RAI back in Sept 2018, I know it the levo thyroxine. I've tried Gluten free etc, I have started taking Levo at night but I just wake up bloated instead of getting bloated half way through the day. I feel good in myself except for this awful bloating. Other than trying NDT which is expensive I really don't know what to do, I can't be like this for the rest of my life, I look like i'm 9 months pregnant! I've also put on 3 stone since being on Levo, it was like it happened overnight, so odd!
I think I am just really sensitive to medication, before all this I rarely took any medication, just the odd pain killer here and there!
Can you add recent results from last Medichecks test
Was this test after 6-8 weeks increase to 125mcg ...or have you increased after test results came back
Did bloating improve with T3?
Many of us need GOOD FT4 and Ft3 levels
How good were thyroid results on levothyroxine plus T3?
Tried dairy free?
Daily probiotic?
Feritin 39.2 (13-150)
Folate 5.85 (>3.89-19.45)
B12 62.7 (>37.5 - 187.5)
Vit D 52.8 (50-175)
TSH 16.9 (0.27 - 4.2)
Free T3 3.18 (3.1 - 6.8)
Free Thyroxine - 11.4 (12-22)
Have I done those right?
These results were from being on just 75mcg of Levo for around 4 weeks but where I felt so ill I up'd my levo to 100mcg just before doing the test, I have since increased to 125mcg from these results.
Bloating wasn't so bad whilst on the 75mcg but since going up to 125mcg its got really bad, bloating was better on t3 but was only on 50mcg levo, did increase to 75 because I felt so unwell on the 50. Was taking 10mcg of T3 a day, if I took anymore it would make me anxious.
I don't really have dairy, I don't like milk or yogurts or things like that and I don't buy cheese because my son just gorges on it lol.
Have never tried probiotic.
The bloating actually causes pain in my right side just under my rib near where my bra sits. I had scans last year because of it but it didn't show anything.
I haven't seen my endo for ages, was supposed to see him in April but obviously it was cancelled but he isn't really much help if I'm honest.
So you were extremely hypo....Ft4 and Ft3 both far too low
Did you split T3 into 2 x 5mcg doses?
Frequently endocrinologist reduces levothyroxine far too much when T3 is added
How much levothyroxine were you on BEFORE T3 was started?
I used to take 10mcg in the morning, was supposed to take the other 10 in the afternoon but made me too anxious.
I was on 125mcg levo before t3. What sort of dose of Levo should i have been on then do you think?
Starting on 10mcg twice a day was far too high too quick
Generally members find it essential to introduce T3 EXTREMELY slowly
All four vitamins need to be OPTIMAL before starting
Levothyroxine dose
Depends where Ft4 was in range before T3 added. If Ft4 only halfway in range, unlikely to need to reduce at all. If Ft4 near top of range likely to need small dose reduction.
Typically reducing levothyroxine by 25mcg and adding 2 x 5mcg ...1/4 tablet waking and 1/4 tablet mid to late afternoon
Hold at that dose for 6-8 weeks and retest before considering adding any more
Personally I started for first week by only reducing by 12.5mcg and adding 1/8th tablet (speck of dust) twice day. Even that was quite a jolt.
After a week I dropped levothyroxine a further 12.5mcg (so down 25mcg in total, from 125mcg to 100mcg) and increased T3 to 2 x 5mcg
Waiting 8 weeks and retesting
After 8 weeks endo then increased T3 to 3 doses per day (10mcg at 7am, 5mcg at 3pm and 5mcg at 11pm) but levothyroxine was NOT reduced any further
And after 3 months, I was so much more active Ft4 was dropping at each test, and I very slowly increased levothyroxine back, initially to 112mcg and then to 125mcg
More details on my profile
Changing brands is tricky. Personally I prefer morningside, but it took about 3 months to get use to it after Mercury
Thank you for all your help. It's all so complicated isn't it! It doesn't help that the endos just look at numbers of ft4 and tsh. I do find all of this a mind field. I live in a small seaside town so don't get much options of anything. I've got to go to the chemist later so will have a word with them about t3 supplies, but I won't hold my breath. I tried 5 chemists when I was trying to get MP but none of them could help me.
I drive 12 miles to tiny, but EXTREMELY helpful pharmacy
Took me 25 years searching to finally find one where pharmacist completely understands thyroid patients frequently can’t change brands of levothyroxine or T3
He keeps permanent stock of MP levothyroxine for several people like me who only take MP levothyroxine
Obviously has to order T3 in specially but again always ensures same brand
Prior to this I use to trawl around maybe 4-5 pharmacies every 2 months trying to get right brand
What were TSH, Ft3 and Ft4 results before starting on T3?
All I have is that Free-t4 was 16.9 and TSH was 4.06, no ranges on the letter from my endo and they do not test ft3, they never do. The first time I had it tested was a few weeks ago with medichecks.
So before starting on T3 you were very under medicated
How much levothyroxine were you on with that result?
TSH far too high
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
This is how useless my endos are. This was back in Dec, he said my levels were fine!! I was on 100 mcg at the time. It's only since then I've really started looking into it all and started trying to understand it all. Was just so sick of being unwell. So after reading all your posts that's why I ended up doing the blood tests through medichecks and trying to monitor it all that way. I decided I will get my thyroid and vitamin levels optimal on levo before I try anything else!
Frequently getting levothyroxine dose optimal and all four vitamins at very good levels many many people find they don’t need T3
Most important results are Ft3 and Ft4.
Many people just need proper dose of levothyroxine (always the same brand) and ongoing vitamin supplements to maintain good levels
Most endocrinologists are diabetes specialists and know little about how to find tune thyroid management
I will continue with what I am currently doing then see if my drs will test all thyroid levels and vitamins as they have been more helpful previously, if not then I'll have to do medichecks again.
Thank you for all your help, you are very kind.
guidelines by weight might help if you need to push for dose increase
But if you don’t like dairy...likely you may be lactose intolerant and then frequently need higher dose than average
ncbi.nlm.nih.gov/pubmed/240...
Lactose intolerance was diagnosed in 75.9 % of the patients with HT
read.qxmd.com/read/24796930...
These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.
Even though we frequently don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
BMJ also clear on dose required
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you did this test?
Yes this is how I done the test, have read your post of this before so made sure I followed it 
So you split dose the day before testing, but didn’t usually do that
Many, many people find it essential to split dose
All four vitamins are too low, hardly surprising with those thyroid results
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
Links about iron and ferritin
irondisorders.org/Websites/...
Helpful post about iron supplements and testing
healthunlocked.com/thyroidu...
Looking to improve low vitamin D to at least 80nmol
How much vitamin D are you taking, are you also supplementing magnesium
Oh, the medicheck Dr said my Iron was ok so wasn't worrying about that, I will look at that then, thank you.
I am taking 25mcg of Vit D (thats 25 with the funny sign next to it, that right isn't it?) and 375mg of Magnesium (after reading that it helps with the absorbtion)
25ug vitamin D is only 1000iu
Suggest you get some vitamin D mouth spray, and try 2000iu (2 sprays per day)
You may need higher dose
Thats great, thank you, I have just ordered some.
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Gluten free was the answer for me.
Yes GF frequently helps with bloating
Can see from previous posts you not long stopped T3. It can take long time for levels to rebalance and vitamin levels often drop when T3 withdrawn
You probably have low stomach acid, that causes bloating.
Is there much you can do for low stomach acid?
Yes
Thousands of posts on here about low stomach acid
healthunlocked.com/search/p...
Low stomach acid is very common issue when under medicated and still hypo
articles.mercola.com/sites/...
thyroidpharmacist.com/artic...
stopthethyroidmadness.com/s...
Unfortunately I haven't yet found a solution to the bloating myself, but just thought I'd reassure you that you definitely aren't alone in experiencing this! I also have some suspicions that the Levothyroxine could be partly to blame...but I'm also slightly underactive still and haven't been able to try T3 (yet?)...curiously this problem only really became an issue after I had my thyroid removed a year ago, and I take 200mcg of the Actavis/Accord levothyroxine..so strange
That's interesting. I have looked at the ingredients of all brands and they do all have different things in them. Actavis/Accord has 2 different ingredients in them that the others don't have. I def can't take Teva but I might try MP again just to see if the bloating stops (if I can find it anywhere in my town that is)
Low stomach acid linked to low Ft3 and low vitamins
Low vitamin levels impair conversion of Ft4 to Ft3
I had terrible bloating when taking Actavis. MP gave me awful 24/7 headache so I have settled on Wockhardt as it has fewer fillers
Oh really, that's interesting. I managed to get some murcury pharma today so going to see if it makes any difference to the bloating. I haven't tried Wockhardt, don't they only do that one in 25's?
Just wanted to update. I swapped my levo from activias/accord to mercury pharma, started them last Sunday. Omg what a difference already. I am no longer in pain from the bloating. Can't believe it was the brand and had suffered a year and a half with painful, uncomfortable bloating. For those experiencing the same it might be worth giving another brand a try.
I also suffer from bloating. I have for over 6 years. I’m lactose intolerant so I now only consume lactose free products (milk, cheese etc.) which has helped a lot.
Actavis made me bloated. I’m currently trying Teva again (must be mad) because it’s lactose free.
I’m booking a private Endo who apparently prescribes NDT so I’m hoping that it will help.
I take Vitamin D spray daily and am currently being treated for low iron with Ferrous Sulphate, and I have a good clean diet, so not really sure what else I can do!
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