I have been on 50mg L-thyroxin for 2 months and gained more weight than usual. I am also going through a nasty perimenopausal stage with severe hormonal swings (had a period that lasted for 14 days after having no period for 2 months; I used to be regular like a clock) Is my weight related to thyroid meds or is it just aging? It’s very frustrating to me. I used to be slim my whole life; then with the start of perimenopausal symptoms 4 years ago I noticed slow gain which accelerated sharply this year when I was diagnosed with hypothyroidism. I thought the medication would help me lose weight. Instead I gained a lot more in such a short period of time. Please share your experience.
hypothyroidism and weight gain : I have been on... - Thyroid UK
hypothyroidism and weight gain
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Cossakspirit
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Buddy195Administrator
Welcome to the forum Cossakspirit
So we can offer better advice, can you tell us more about your thyroid condition, eg ongoing symptoms(in addition to weight gain), plus blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
thyroiduk.org/help-and-supp...
Weight gain may be linked to thyroid medication not being optimal. It may take several months of slow and steady increases to achieve optimal results. Having key vitamins optimal also supports thyroid health. It is important to remember that when medics say normal/ within range, this may not be the same as optimal where you feel most well.
In addition, weight can may be linked to pre menopause. It may be useful to have a look at Dr Louise Newson’s free Balance App, as I find it really useful for comparing HRT medications & having up to date research articles. There is also an ability to post questions.
SlowDragonAdministrator
welcome to the forum
50mcg is only the standard STARTER dose
You should have bloods retested 6-8 weeks after each dose change or brand change in levothyroxine
If not been retested yet……Request new test next week
book early morning test, last dose Levo 24 hours before test
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Post all about what time of day to test
healthunlocked.com/thyroidu...
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
I am not able to do private tests because I am in Canada where private health care is not allowed, with very few exceptions. Health care system at the moment is in a state of severe crisis and yet private tests/care remain unavailable. Anyways, My TSH level is within the norm but I have lots of symptoms which started about half a year ago: puffy eyes, severe constipation and a feeling of lump in my throat. My doctor dismissed my symptoms simply because my TSH level is normal, so I had to resort to the other option which many immigrants in Canada use- I consulted the doctor in my home country, Ukr, and although she said this is not ideal without proper tests, I can try L-Tyroxin, in a small dosage. Within two weeks, 2 of the symptoms went away (I look myself again, no more of that horrible puffiness which made me look 5 years older) and within another week the sensation of a lump disappeared too), which appears to confirms that my original self-diagnosis was correct. But my weight gain has accelerated considerably. I just watched a video on YouTube where a doctor says T3 is mainly responsible for weight issue and if T4 doesn’t convert into T3 or worse converts into reverse T3 (not sure what that means) weight gain will continue. He also says doctors are very reluctant to prescribe T3 medication (why?!) so he recommends natural ways of improving it. Any thoughts, please? I should add that I was diagnosed with fibromyalgia 3.5 years ago (but the symptoms started years ago, at first sporadically, then constantly and increasingly more severe. I have severe fatigue, insomnia and worst of all, joint and muscle pain) I came across an article by some American doc who says that as many as 30% of patients with FM also have thyroid problems which often(!) remain undiagnosed. (Not clear why) That was another clue to me that my diagnosis is correct but again, the weight is a big issue for me as it makes my joint pain worse.
Hi there, as others have said, 50mcg levothyroxine (T4) is only the starter dose. You really need to get your bloods done and then consider an increase in dosage. T3 is not something you need to consider yet while you're still working on increasing T4. It can take many months to reach optimum dosage so be patient.
Please ensure you add Canada to your profile
It’s assumed that members are based in U.K. unless otherwise stated
Levothyroxine doesn’t “top up” your failing thyroid, it replaces it
You will need further increases in levothyroxine over coming months
private testing possible
More info on Canada site
Yes fibromyalgia often undiagnosed or inadequately treated hypothyroidism
I am not able to do private tests because I am in Canada where private health care is not allowed
Buying private tests is different to private healthcare. Here in the UK there are many website companies with an array of tests that can be done at home using blood from a fingerprick. The sample is then sent back to the company and within a few days the results are available to view. Not so in Canada?
There is no such thing as private blood tests in Canada. To do a test I need a referral from my family doctor or emergency doctor or a doctor from a walk-in clinic (the last two options are for ppl who have no family doctor). I can’t just go to a testing place, pay and order a blood test which I want. Not possible in Canada.
read these website links for testing in Canada
thyroidpatients.ca/campaign...
Sorry, but I am not sure what your point is. The link that you posted is a manifesto-like statement of Canadian patients who demand to change the current TSH-dominant paradigm that precludes testing for T3 and T4. That’s what I was trying to tell you here and that’s why I am seeking answers based on my symptoms rather than my TSH results. As you can see, this manifesto was published back in 2018 and nothing has changed. It says:
‘ Due to the TSH-dominant paradigm that limits our health, the pituitary TSH measurement is the first and only test in such simplistic flowcharts. The TSH results overrule and limit all subsequent diagnosis and treatment decisions. [13]
Also gained weight since starting Levothyroxine a year ago. Around 1 and half stone. It’s ridiculous isn’t it?!
SlowDragonAdministrator
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, 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
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Some people need a bit less than guidelines, some a bit more
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.
Also here
cks.nice.org.uk/topics/hypo...
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
I am sorry to hear you are struggling with this, perimenopause is a nightmare. I promise you it does get a lot better once you get through it.
Given the difficulty with getting your thyroid treated, I would be tempted to work on your perimenopause symptoms so you can at least take that out of the equation. HRT (oestrogen and progesterone) might help regulate your periods. There are also other ‘natural’ supplements you can take as well. I can recommend ‘Stacy Sims: Next level’ - it has a really great explanation of all the possible peri symptoms and options for treatment beyond HRT. It helped me understand why I kept getting muscle tears. For me, HRT was a revelation but your mileage may vary.
Best of luck.
Thank you for your reply and words of support. My perimenopausal symptoms seem to be a different issue and I did try different supplements. When I skipped the cycle last time, it felt like I was about to have a period every day for about a month - cramping on and off, full and painful to touch breasts, the desire to eat salty food, severe night sweats and another very strange symptom-a sensation of burning, with metallic taste on the tip of my tongue. To relieve this craziness, I tried natural estrogen, which didn’t make any difference. Then I read that it’s actually progesterone that should be supplemented, so I tried progesterone cream, also natural and also with no visible changes. Then I had a heavier than usual period for 14 days straight and it’s only when it stopped (almost three weeks ago) all those symptoms went away. I stopped the cream as soon as my period started, as per instructions. So far I haven’t had any of those symptoms even though I haven’t resumed the progesterone cream. I wonder if perhaps the unusually long period had something to do with the cream. In the past I tried primrose oil and some other supplements for PMS symptoms when I had a regular cycle; I never noticed any difference but when the symptoms return I always feel overwhelmed (in combination with fibermyalgua pain, it’s really too much), I feel the urge to try new supplements and dietary changes (like eating more almonds, which some women claim to help a lot), but nothing seems to work. I am just hoping this will stop when I stop having any periods, although my hope is slim because my mom still has severe hot flashes and she is 73 (but she had no erratic periods during her perimenopausal stage, so it’s very individual). I think the severity of peri and menopausal symptoms depends very much on genetic factors. This problem runs in our family, unfortunately, while some women barely notice this transition to a post-fertile period.
So you have not even been diagnosed with hypothyroidism, but self-diagnosed based on symptoms with a TSH in range?
If I were you, I would go off levo for 6-8 weeks and then retest. You may not even need levo.
If it turns out you are hypothyroid (high TSH, low FT4), 50 mcg is unlikely to be a sufficient maintenance dose.
But please, first make sure you need thyroid hormone replacement.
Thank you for replying, Sunflower. The doctor I consulted is my Mom who is a (retired) cardiologist, not an endocrinologist, so yes, she is not sure it’s the right diagnosis. But as I explained in another reply below, I really have no chance of getting more tests done or going to a different doctor for a second opinion. One symptom- severe conspiration- was particularly surprising to me since I eat very healthy, with lots of vegetables, beans and soups, all cooked from scratch every day. My diet hasn’t changed (except that I eat more bec I feel hungry a lot more), so I was puzzled that this symptom appeared and wouldn’t go away even with the use of suppositories. I developed a fistula and a crack, I was bleeding every time I had stool and nothing helped. Then I started feeling this strange sensation of a lump in my throat. It was not constant, but it would appear several times a day, very strangely and persistently. When I looked it up, one of the possible reasons listed was thyroid problems. I then looked up hypothyroidism and saw constipation among typical symptoms. So, it seemed that the pieces of a puzzle began to fall into place. I tried L-thyroxine, as a last resort option, and it did help with both symptoms. But I definitely gained more weight since taking it. So, I don’t know what to di. Apparently I have to stop taking L-Tyroxine and see if the symptoms reappear. It sounds insane to have this kind of trial and error treatment but I have no options. Some other time I would go to Ukr and have a thorough examination through a private doctor which would not cost me a fortune as in the States (though it would be a bad option in terms of the inconvenience for my family who need me home every day) but because of the war this option is now out of question too.
My quality of life of very low due to fibromyalgia symptoms. I read that thyroid patients also suffer from joint pain, so I thought perhaps I was misdiagnosed and my pain is only because of thyroid problems but no, joint and muscle pain persists and its intensity dépends very much on the weather, which is typical for FM patients. Some days I can barely move around, my body is so stiff and the shooting pain in my legs is so bad. Having this, plus the new symptoms that I described was too much for me.
Cossakspirit
My doctor dismissed my symptoms simply because TSH level is normal, so I had to resort to the other option which many immigrants in Canada use- I consulted the doctor in my home country, Ukr, and although she said this is not ideal without proper tests, I can try L-Tyroxin, in a small doses. Within two weeks 2 of the symptoms went away
Sunflower64 pointed out something I think was overlooked.
What is your TSH? The range is so wide that “in range” means very little.
Also, your Ukrainian doctor is right - you need proper tests! But moreover, even if you needed Levo (which you might) trying it “in small doses” is NOT how Levo works at all. Indicates you should question other advice from this doctor.
Lastly, symptoms going away in 2 weeks on 50 mcg Levo also is not how Thyroxine works. It’s much more complicated than that.
Please share your TSH result and any other blood tests you had done.
If you stay of 50 Levo, you’re likely going to start to feel worse for the long term.
Thank you for your reply. I understand your scepticism but I couldn’t really ignore my symptoms any more, especially the feeling of lump in my throat and severe constipation (it got to the point I couldn’t sit from pain and even suppositories didn’t help while taking L-thyroxine did solve the problem). Changing the doctor is not an option. In Canada millions of ppl don’t have any family doctor and have to go to an emergency department or walk-in clinics which do not deal with chronic conditions. 8 years ago when my son required an adénoïdectomie we had to wait for 3 months even though he was unable to sleep properly night after night from severe blockage in his nose. And that’s after we had already waited for 4 months to see a specialist for a diagnosis. It felt like a nightmare. After covid, the situation got much worse. Wait time to see a specialist is now 8-36 months and it’s difficult to get a referral, as family docs avoid giving it to patients precisely because wait times are already so long. Some wealthy Canadians go to the States for private care but it’s too expensive for me and it’s too long s drive.
So my TSH is 0.42. I took the test in the morning on an empty stomach (again, the doc never warned me about that, she just gave me a referral and I looked up how to do a blood Test for thyroid function). Based on the results, I might actually have hyperthyroidism but the symptoms appear to point to hypothyroidism. I am confused, honestly. I’ve read online that TSH level alone might be misleading and T4-T3 results are required for a more precise diagnosis but she refuses to give me a referral for further tests or for an ultrasound (and the wait time is 8 months anyway). The protocole here: if TSH is normal, end of discussion. This is apparently why some doctors note that too many fibromyalgia patients have thyroid problems and go undiagnosed.
Cossakspirit What are the units of measure and the range for that TSH test?
You will see something like mIU/L (or µIU/mL) and a range of numbers next to it that are maybe
0.4 to 4.0…. Or 0.5 - 4.5 …. Or something like that.
I’ll assume it’s lower range is 0.4 if 0.42 is interpreted as normal.
I’ll also assume, but please confirm, that the 0.42 result was before you were taking any hormone replacement.
If that is the case then taking Levo right now could be very dangerous, if in fact your TSH is low, and you have no idea what your Free T4 or Free T3 is. There are cases where TSH is low and Free Ts are low requiring Levo, but that is not the norm.
Further, symptoms for being underactive vs overactive can “feel “ identical, and it is only with symptoms PLUS blood test results that we can know what treatment we need.
I am not, and it should be assumed none of us are, doctors on this forum, and none of us here know anything about you. You’ve told us very little so this could be way off. Can’t tell if I’m missing something entirely. But what little you’ve said could be concerning and I hope you continue to engage a doctor in whatever healthcare system is available to you.
Thank you. My TSH is 0.42 and it was before taking levotyroxin. The units of range are 0,32-4.0. That’s what I see on my test which I can access online. It also says HDL cholesterol 1.25 and it’s marked as low, also low is Creatinine, 46 )the lower range is 50, ( but my doc didn’t comment on that). I don’t know why you think I told you ‘ so little’. I thought I actually described a lot, all of my symptoms. What else would I need to tell to get a better diagnosis?
See Buddy and Slowdragons responses above.
You have provided a TSH number. Now, sometimes a single TSH number can tell us something useful, for example, a very high TSH (anywhere from 3 up through even 10 or higher at times) can be fairly clear that hormone replacement is needed. We’d still want the other tests to calibrate our approach, but that’s what we’d expect.
But in your case your TSH logically and in the vast majority of cases would mean your thyroid hormones right now are too HIGH, and you are taking more. So that’s the concern.
That being said - without at least an FT4 - you shouldn’t listen to me or anyone about this. Further, especially in early stages of thyroid issues things can fluctuate. Low TSH is more rare than a high TSH. So even more reason to be methodical and stay engaged with your healthcare system - get on the list even if there’s a long wait.
What you need medically and how you navigate your healthcare system are separate things. Everyone has a fight to get what they need.
You have described symptoms but the list of symptoms for underactive thyroid issues is also similar to the list of symptoms overactive thyroid and for many other things as well.
I can’t get on the list because my family doc didn’t deem it necessary to give me a referral based on my TSH results. That’s why I am browsing forums and websites, searching for answers. Also, I should have perhaps mentioned that when I was a teenager, back in Ukraine, I had an autoimmune disease, vasculitis, and for almost a year it was undiagnosed because one symptom was missing. I had severe abdominal pain after each meal but all the tests related to abdominal functions seemed fine. My mom suspected all along that it was auto-immunal but she hesitated to start me on meds bec prednisone is such a serious medication. Then the summer came and once I was exposed to the sun I developed that typical symptom-the so called butterfly rush on my face,( so terribly embarrassing to me as a teenager) and rush-like redness on my hands and legs. I started prednisone, very high dose, gradually decreasing it and all symptoms went away. Almost miraculously, after five years on prednisone, I was completely healthy (just one flare up caused by extreme stress a few years later, also treated with prednisone). I went on to have two pregnancies in my early 30s without any complications. But the point is, sometimes the diagnosis can be difficult and with the health system so broken now, many patients remain in limbo for years. I’ve seen lots of horror stories, much worse than mine. Anyway, thank you for your answers.
Maybe you can try the thyroid organizations in Canada.
For example, both have a phone number to call. And here is info on support groups:
thyroidpatients.ca/groups/t...
And specifically there is a section on pre-therapy diagnosis support. It’s sub section #5 in the link above.
Specifically it says:
How we can support
Discover official diagnostic criteria for the major categories of thyroid disease, but also learn what their common blind spots are for these diagnostic methods.
Offer tips on getting tested for FT3 and FT4, since a doctor can’t often test these if TSH is normal because of draconian restrictions against ordering so-called “unnecessary” tests. Sometimes it means using user-pay health services.
Your challenge is so common, and organizations and patient groups are all too familiar with it. TSH is usually the only thing they look at and it is “draconian.”
For you, your TSH is not normal, and clinically only a hair within range. But we most often see high TSH, and that’s a lot easier to make guesses about.
For you, in my opinion, no one (yourself included) should be medicating/replacing your thyroid hormone without more information.
Thank you for the links. I am not sure what they mean by ‘user-pay services’ since there is no such option in Ontario (I heard that some limited private health case is available in Quebec which would require an eight hour drive for me and, based on the new super Draconian language law, doctors are obligated to speak French only in Quebec ), but at least I can commiserate with fellow Canadians who are in a similar situation, fighting against these impossible protocoles that restrict testing and referrals.
For now I decided to stop taking Levothyroxine to see if any of those symptoms return. The story with my autoimmune disease taught me a lesson. Back then the initial tests were only borderline for inflammation but once I was exposed to the sun and developed the typical rush the test was double the norm. So, sometimes sub-clinical situations persist, with unclear diagnosis and symptoms.
Which province are you in?
Dynacare partners with the UK company Blue Horizons and you can get private bloodwork done.
Blood Tests Canada: Private Blood Tests in Canada - Order ...
Blood Tests Canada
Okay, I read your other replies that you are in Ontario. That ought to work out fine with Dynacare.
Also, your GP should refer you to an endocrinologist. That takes a few months to get an appointment. Depends on the GP. Some of them have more savvy than others to get you an appointment with just about any specialist. Recently I had an appointment one year away for a gynecologist. I told them this is unacceptable and they made me an appointment with another gynecologist which was a two month wait. There ARE ways to get around what is supposedly a 'crisis' in healthcare. You just have to be firm about your requirements.
Thank you so much for link. I am so glad I came across this forum. I got so much information. It’s a huge surprise to me that this company provides referrals for blood work on its website and Dynacare then does the rest. How did you even hear about them? I’ve never heard of this option in Ontario and the website of Dynacare itself doesn’t mention it. Why? They say ‘upload your requisition’ but I assumed the requisition can come only from my doctor who refuses to order T3-T4 tests, as I explained. I really don’t understand why the information about this third company which can issue requisitions for all kinds of blood tests is not mentioned on Dynacare website. Apparently few ppl know. I saw discussions on Facebook regarding the lack of private health care in Canada and nobody mentioned this company.
So, I now stopped taking levotyroxine; I will wait for 2-3 weeks to make sure it’s out of my body completely and then will do the test. It’s not cheap but still affordable. My main worry now is how my doctor will react. But I need to at least know what’s going on.
At least you do have an option.
I scheduled the test for next Friday. In the meantime since I stopped taking l-thyroxin I started having heart palpitations almost daily, usually after eating. I don’t know if this is somehow related (a withdrawal effect) but it’s hard to ignore this strange symptom. I can feel my heart up in my neck, if that’s the correct way to describe it.
Possibly. Or a combination of both not taking thyroxine and hormonal issues from perimenopause. You might want to discuss HRT with your doctor as well. And if you get nowhere, ask to be refered to a gynecologist. They have a better understanding. Depends as well, it seems on the age of the doctor. Younger ones (female) are on board with HRT. It is actually best to start before menopause.
Oh my, a referral to a gynaecologist… I already talked to her about my perimenopausal symptoms. She completely dismissed all that. Although older than me, apparently she is one of those lucky women who barely have any symptoms. I asked for a blood work to check my female hormones; she refused too under the pretext that I don’t want HRT anyways and I really don’t because I reacted to contraceptives in my late 30s by gaining weight drastically (and water retention) at a time when I had no issues with weight whatsoever. I was surprised how violently my body reacted to artificial hormones. As soon as I stopped them everything went back to normal after one cycle. So, unfortunately HRT is not for me. I am wondering if I have a problem with blood sugar. Talking to her about blood test to check for that will be another battle. I counted how much it would cost me to have all the blood tests that I want through this private company (for vit B12, D, for blood sugar, for cortisol, for female hormones, and a more advanced one for thyroids) - that would cost me over $1000, too much for me. I need to be very selective. They have a separate test for negative T3, not sure what that is, and a few other thyroid related indicators. For now I’ve picked the ‘intermediary’ one that includes free T3 and T4, in addition to TSH.
You can get a glucosemeter from any pharmacy. The meter is 'free'. You pay for the strips. Usually it's $70 for 100 strips. Then you can check how your blood glucose reacts to different foods and adjust your diet accordingly.
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