I was put on levothyroxine 18 months ago at 25mg then upped to 50 and then 75mg 3 months ago but over the last 18 months I have put on 4 stone. My BMI is now 40 yet the Dr does not seem to consider this an issue. I stopped taking the meds for a week and managed to lose 2lb doing nothing different so now thinking the levothyroxine is definitely not right for me.
My recent bloods are:
TPO 117 IU/Ml (up from 108 4 months ago)
FT3 3.82 pmol/L (down from 3.92 4 months ago)
FT4 14.0 pmol/L (up from 11.9 4 months ago)
TSH 3.4 mU/L (down from 4.6 4 months ago)
Random eGFR 74mL/min out of range but marked as no further action on report.
I've looked at getting the advanced female hormone blood test from medi checks to see what else might be going on. Have gone through menopause with no HRT and 21 years ago had to take clomid due to low progresterone so guessing this is a possibility.
Had a hair sample test which showed I was deficient in Vitamin E and B9 plus low strains of bacteria (Bifdobacterium Infantis etc.)
Got a message from GP to book a consultation tomorrow to discuss my TPO result and going to tell them I cannot carry on taking levo with the weight gain. I do all the right things and on levo there is weight gain - without it there is not. I'm even thinking of asking for a referral for gastric band surgery as I've stopped wanting to go anywhere due to my weight.
Getting to the point where my head is spinning and I don't know what to do.
Sorry for the long story....
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LincsLady
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It’s not the Levo. You’re not on enough, that’s almost certainly the problem. It looks very much as though your doctor is only interested in keeping your results in the laboratory reference range instead of getting them optimal. We see it here every day…
Do you have the lab references for these results? I can see from your TSH that you’re undermedicated but would get a better picture if we had an idea where your FT3 and FT4 are in range.
I agree with Jazzw. Its much moreLikely that you are under medicated. if you had had trouble getting a diagnosis and medication you might be in an even worse position now. To stop taking the medication could eventually have serious consequences so please look into this further.
We really need the lab ranges as these vary from lab to lab - but your TSH is still waaaay too high (we don't need a lab range for that one) so as others have said you are under-medicated.
Once on levo, your dose should be checked and increased every 6 - 8 weeks by 25 mcg a day until TSH is routinely less than 2, probably less than 1 - and most important - your actual thyroid hormones are good and you feel properly well. Always an early morning, fasting blood test - before 9 am, as TSH is highest in the morning, 24 hours from your previous dose of levo (tweak timings the day before if you usually lake levo at night).
And when I say your thyroid hormones need to be "good", beware the tyranny of "in range" - that's nowhere near good enough. For example if the lab range for free T4 is 12 - 22 and your result is 12.5 you will feel dreadful. If it's 19.5 you will feel much better - but both are "in range" and therefore "job done" to a lazy half-asleep GP. Most of us need BOTH frees in the top third or higher of the lab range, and I for one can't lose weight until they are.
Have you had key nutrients tested - ferritin, folate, vit D and B12? I've had some success with my GP by saying these are the tests recommended by Thyroid UK - but the vit D is tricky under NHS protocols. Good luck x
Thanks fuchsia-pink My lab ranges are < 34 for TPO Free T3 [3.1 - 6.8] TSH [0.27 - 4.5] and Free T4 [11.0 - 23.0]I got my vitamins tested myself as GP won't do them and the results were low Vit E and B9 plus gut health as listed. Thanks for your advice - waiting for GP to call me today about results and have explained about optimal ranges etc.
I am really sorry for you because you've gained 4 stone.
I think - and am not medically qualified - that it is levothyroxine that's caused it. Levo is T4 - T4 is an inactive hormone and it would be good to have a trial of T4/T3 to see if it will help your increased weight. Levo is supposed to convert to T3 (liothyronine). I doubt it does effectively for quite a number of people.
If we do have weight gain the majority of doctors seem to believe that it is the patient's fault i.e. overeating or indulging in cakes/sweets etc.
We need sufficient thyroid hormones that suit us (makes us feel well and not symptomatic). A trial of T4/T3 is warranted. If you're in the UK they've withdrawn the oldest thyroid hormone replacement and it contains all of the hormones a healthy gland would do i.e. NDTs - natural dessicated thyroid hormones. Imagine 'professionals' (please note small p) not being aware of what is the most suitable thyroid hormone replacements for many people who're hypo.
NDTs have been withdrawn by the BTA unfortunately. I have no idea what brains these 'supposed to be' experts have.
Some people add T3 to their T4 dose but, again, T3 is impossible to get prescribed. You'd have to consult an endocrinologist but not all will give you a trial of T3 to your T4, i.e. T3/T4.
Me also - I know how putting on weight, out of the blue and not being able to do anything about it - worse still, docs don't believe us. Shockingly Deplorable.
It would seem that the majority of doctors nowadays are poorly trained in dysfunctional thyroid glands, whereas those doctors trained before blood tests were introduced, diagnosed hypo patients upon their clinical symptos alone and prescribed NDTs.
The professionals seemed more learned in 1892 than today as it was all done without blood tests but solely upon the patients' clinical symptoms alone plus NDTs, so doctors were more knowledgeable then than now as NDTs were withdrawn recently by those who we thought would be kinder and more knowledgeable than those in 1892. We're disappointed.
Absolutely, shaws. If their level of ignorance wasn't matched by arrogance... even that wouldn't be quite so horrendous. With the help of Dr S and Dr P, I've found my own way - on many levels - because if they don't get the thyroid bit, then forget the rest (except some of the even 'worst' illnesses). I've said before, this will [certainly needs to] go down as one the biggest medical scandals... CFS/ME too but that doesn't have the rich history or available hormones that hypothyroidism [the thyroid] had. Shame on them!
History of Hypothyroidism... aliens seeing what's been done!
I consulted with Dr S and Dr P and they were gentlemen who put themselves forward to assist patients to recovery and for this both were pursued by the 'authorities' for not following the 'modern method' of how to spend more money on 'extras' to control symptoms and keep Big Pharma happy.
Dr Peatfield resigned his licence but continued to consult and suggest how the patient could recover.
Dr Skinner's (RIP) staff have collated all of their research and were hopting to publish and they stated "it would shake up the medical professions' but they were attempting to raise the monies needed to do so.
We need more courageous doctors but many would lose their livelihoods altogether so that would be the wrong. I think we, the patients, should have a vote and a trial of whatever thyroid hormone replacement we wished.
The following expert knows what all of our 'experts' used to know but the modern ones seem to not be aware of how to do this.:
They certainly were, both of them and yes to all you say above! Pleasure to visit such 'good men'. Yes, thanks for the link - seems you and me share similar views on this
Without courageous doctors, the field of 'corruption' opens wider with even the 'good guys' falling in their hole... too scared to say or do anything. Somehow this needs to stop... it seems that all of the ailments suffered by thyroidees is enough to keep some disciplines going. 👽 One day... ☘️
HiI am the same 3 stone in 18 months on levo.. My test show in range but I still have not feeling normal systoms..
My gp is understanding and its been suggested that I may try the liquid form as I seem to be slow in absorbing.. I take 125 150g alternate nights... My weight has not gone up no more but certainly has not gone down. I was 68 when diagnosed with hypo and now currently under 1 so in July it will be 8 weeks with the alternate dose, getting my ft3 done ft4 done again so all my results will be to see if I should move to liquid levo.. Will post here in next couple of weeks to get more info.. Hope my reply helps as we both have gained lots in the same amount of time
Same here Lots of weight gain on level only and doc said my weight was fine
They know its not but don't want to address it. I eventually went on ndt but can't get my brand anymore but fortunately my endo agreed to trial me on t4/to and I am only 3 months on a d so far so good.
It's good that your Endo has some compassion. It's missing from many doctors.
Levo doesn't always raise people's metabolism and being T4 only some hypo people cannot convert into sufficient T3, so a reasonable trial would be a T3/T4 combination.
Levothyroxine is T4 alone. It is supposed to convert into T3 but I don't think mine did as it gave me severe palpitations.
Despite heart monitors and even overnight monitors, the cardiologist was puzzled about them and was contemplating putting an implant in my heart to 'see' what was going on! Just then T3 was added to T4, palps ceased and I never consulted cardio again. My body became peaceful as my heart also stopped palpitating.
Best of all T3 has been prescribed now as I have multiple autoimmune conditions.
It really does beggar belief doesn't it that you can tell your GP that your BMI is 40 (like mine) and they still say that you would have to lose weight to get a gastric band rather than prescribe T3 on a named patient basis. My GP called me late this afternoon and heard all that I said about the T4 is not helping and that I have stopped taking it because I can no longer cope with the weight gain. Her response was that I might get T3 from the Netherlands but not in the UK and that I should eat less. Well maybe if I become anorexic she might believe that I have stopped eating very much lol. I remained as calm as I could and suggested she refer me to an NHS Endocrinologist in the hope they will authorise the T3 and I can get a private prescription. Running out of ideas as all the private GPs on the list charge £200 or so for 1st appt then extra for bloods then extra for follow up and then a prescription charge. I just feel so gutted and broken.
For me - No sugar, no sweets/chocolate/softdrink, no artificial sweeteners, no gluten. 30 min medium exercise per day. Plenty of red meat, green veggies, potatoes, rice, yogurt, milk, wine, honey, gluten-free weetbix. Coffee
Interesting. And did you lose the weight before or after you cut out all the crap?
Cos—it looks to me like it was probably the change in diet that helped you lose weight, not the NDT. And that’s great, honestly—you have my total respect!—but it’s perhaps misleading to infer that switching from Levo to NDT is what made the difference?
It did make a difference to me. When on levo i tried every diet under the sun with no weight loss. When i changed to ndt and stuck to a diet i lost a stone and it has not gone back on despite now eating more
I had already stripped my diet down but cutting the levo out I have lost 1 stone in 1 months - no different diet etc just no levo. Luckily I have an appointment with the prescriber at Roseway Labs next Friday and hope to get NDT prescribed so will then take levo again 100mg with NDT and see what change that makes.
Why did the 'professionals' in the UK, withdraw NDT, considering its safety has been well-proven since 1892 and saved lives from thereon.
Are the professionals being paid? for prescribing particular thyroid hormone replacements? This is only a query but Dr John Lowe (RIP) stated that in the USA endos were paid to prescribe levothyroxine when it was first introduced.
It is commonsense, when we think of it - as NDT is made from animals' thyroid glands and contains all of the hormones a healthy thyroid gland would do. BUT it was withdrawn, despite is safety proven since 1892. Which would we prefer, a product made from animals' glands or synthetic.
"Levothyroxine sodium (for example, Synthroid, Levoxyl and Levothroid), is the synthetic version of thyroxine (T4), liothyronine sodium (Cytomel, Triostat), is the synthetic version of tT3 and liotrix (Thyrolar) is a synthetic thyroid hormone containing a mixture of T4and T3.
75mcg levothyroxine is only one step up from starter dose levothyroxine
Request 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks later
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
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.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
I am 233 lbs so around 103KG I think. I've stopped taking my Levo as I can't cope with any more weight gain. GP says she will prescribe 100mg and re test blood in 2 months. I laughed when she said that and said so 75mg is piling on weight so you want me to take 100mg are you joking ....
Sorry to say I have lost 16 lbs in the last month since I stopped Levothyroxine rather than rapid weight gain. I got rapid weight gain from taking increasing doses of it so had to do something drastic as I was getting to the point where I refused to go out as I was so ashamed of my size but also my breathlessness kept me from wanting to do anything anyway. I had vitamin deficiency tests done and so now taking Vitamin E and probiotics which is the ones that were low. I never had a coeliac test done but now do strictly gluten free - albeit it is expensive. Not only that I follow an anti inflammatory diet which means that things like bell peppers are off the menu along with quite a few things I used to enjoy.
I do have an appointment with Roseway Labs for a private prescription next Friday and hoping to get T3 or NDT so I can start taking the levothyroxine again with it and assess what happens with my weight. Last prescription I asked for Wockhardt so will go and collect it this weekend ready.
I am now in a strict routine and happy sticking with it as the weight is dropping 3lb a week or 2lb a week. I am starting to feel that there is some hope and that life is worth living rather than staying inside feeling lonely and worthless.
That's what taking Levothyroxine did to me. I am really hopeful that a small dose of T3/NDT is going to make the change needed. I'm not a scientist or GP but I have done a lot of research and there has been a lot of really good research shared on this site which I am very grateful for.
Not everyone will thrive with just Levothyroxine. Some of us will need T3/NDT. Just a shame that it has to be so convoluted and that I have been put in a position where I have jeopardised my health because there is no leverage with own GP - just the default position - levels are within range (not optimal) and keep increasing the dose despite massive weight gain.
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