Weight gain: I literally am at my witts end...in... - Thyroid UK

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Weight gain

les121 profile image

I literally am at my witts end...in 3 years I've gained 5 stone!...I'm 53 so imagine some perrimenopause and the rest thyroid...but its relentless..I've literally watched the scales go up each stone..and I've now reached 18 stone!...never in my life have I been this weight and I'm getting scared ..even calories counting goes ok for a couple of weeks then that's it ...it stops then I get peed off...I look like a different person..the hurtful thing is I've always been a Showroom Host at car dealerships...I managed to get an interview...but didn't get the job although I'd done for the last 10 years and I'm convinced it's due to my size..currently on 125mcg levo (useless)..awaiting my shipment of thyroid s 😊...anyone else gained weight like this with no change in diet ?...mortified when I see myself 😭

60 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Les121

Low T3 makes weight loss difficult. What are your current test results?

les121 profile image
les121 in reply to SeasideSusie

Well my Tsh went up to 49...then to 5.6...then 31.2..and T4 at bottom of range..as per usual no T3 test..being treated for low ferritin.

SeasideSusie profile image
SeasideSusieAdministrator in reply to les121

Many members can't get FT3 tested. You can always do a private test as many of us do. MonitorMyHealth tests TSH, FT4 and FT3 with a fingerprick test for £26.10 with code here :

thyroiduk.org/help-and-supp...

Some experts say that the optimal Ferritin level for thyroid function is 90-110ug/L. Do you have iron deficiency? That inhibits conversion of T4 to T3.

SlowDragon profile image
SlowDragonAdministrator in reply to les121

How much levothyroxine are you currently taking

Do you always get same brand

18stone = 114.3kilo

Dose of 1.6mcg per kilo

Guidelines on dose levothyroxine by weight would give dose around 182mcg levothyroxine per day as likely daily dose required

What vitamin supplements are you currently taking

Essential to regularly retest vitamin D, folate, ferritin and B12

You might find this of interest :

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Looking at previous post for few days ago

so I've increased to 150mcg over the last 2 days

Likely to need further increase in levothyroxine in 6-8 weeks

...as for ferritin it was 11 ...6 months ago and they still didn't give any medication...

Obviously that’s a huge issue

Are you vegetarian or vegan?

Likely to need to improve low ferritin over many, many months

Look at increasing iron rich foods in diet

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

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if supplementing

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Iron/ferritin and restless legs

healthunlocked.com/thyroidu...

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

Likely vitamin D, folate and B12 may be low too

Please add most recent results

les121 profile image
les121 in reply to SlowDragon

Well I did start taking 150mcg but the doctor said its to much of a jump from 100..so I've been taking 125mcg..but as soon as my thyroid s comes il be starting that...also been prescribed iron tablets now..so at least that getting dealt with..No other supplements...I do have a B12 spray I will start using also.

SlowDragon profile image
SlowDragonAdministrator in reply to les121

Get vitamin D, folate and B12 tested

Via GP …or privately

luckyironfish.com/ is a way of getting iron in the diet. I use it when cooking rice and making soups and stews on weeks when I don't have red meat.

These iron fish look interesting, but quite pricey. I have tried all sort of iron rich diets including regular black pudding, and ferrous fumarate tablets with vit C, but ferritin just stuck c.50. Were you successful in getting ferritin levels raised with fish, do you have any results to share!

I would say the fish is a good substitute for taking iron supplements and the difference might be spending a smaller amount regularly or in a one-off bigger amount. So, if you aren't getting enough from your diet for whatever reason.

The iron fish lasts years if not forever so you might decide it is worth the money.

I actually started using it when I was turned away from donating blood due to anemia one too many times years ago and was able to donate fine after. That is of course until the thyroid cancer stopped me from being able to donate at all. 😔

levogirl profile image
levogirl in reply to SlowDragon

In the current situation, GPs are only doing emergency blood testing, so is it the same ruling for private blood tests, do you know? thanks

SlowDragon profile image
SlowDragonAdministrator in reply to levogirl

No private testing is totally unaffected

Much Smaller tubes

On test early Monday or Tuesday morning and then post back via tracked postal service

A low calorie diet won’t work (for long) if you have undertreated hypothyroidism. I’m almost certain low calorie diets don’t work for anyone. Oh sure, you’ll find the odd person who becomes more and more committed to reducing their calorie intake and keeps their weight off by eating little more than air in the end—but the vast majority of people who lose weight on a low calorie diet will put it back on again.

Why? Well, because the body down regulates in the face of calorie restriction (definitely not a good thing for someone whose body is already down regulated due to being on insufficient thyroid hormone replacement). It took me a while to understand which bodily processes exactly get down-regulated—but I’ve come to understand it’s the repair and renewal stuff the body does when it’s well fed. The very stuff someone with a non functioning thyroid needs their body to get done.

There are two things which cause weight gain (and believe it or not, neither of them are to do with being a lazy glutton). Those two things are insulin resistance and raised cortisol. If you’re unlucky, you’ll have both. Raised cortisol happens as a byproduct of being undermedicated and as a byproduct of having high levels of inflammation—which tends to happen when we’re undermedicated because our guts become less and less efficient and processing food and therefore don’t absorb nutrition very well. Raised cortisol makes you very hungry. And insulin resistance happens because we all now commonly eat way too many processed foods and the huge sugar/glucose hit eventually takes a toll (for many not all—some lucky people’s metabolisms can take it, but with every generation I think those lucky people will diminish).

So, losing weight for the hypothyroid person becomes (a) get optimally replaced with thyroid hormones and rectify any nutritional deficiencies (such as low Vit D, low folate, low B12, low iron/ferritin). Many hypothyroid people will start losing weight then. (b) If that’s not doing the trick, cut out the crap from your diet. We all know what the crap is. Eat real food. Eschew all the processed stuff as much as you can—if it’s something that you could theoretically find in its natural form without visiting a supermarket, that’s real food. Something you could theoretically grow or breed yourself.

If that isn’t enough (and for many it is!) the next step is (c) make sure you don’t graze on food all day but stick to no more than three or four square meals a day and don’t snack in between. Many swear by fasting for longish periods—anything from 10 hour daily fasts upwards—but in a person who’s grappling to keep on an even keel with hypothyroidism it may not be for you—some experimentation may be needed. Again, many find that having a few meals a day and no snacking is all they need to do for the pounds to start coming off.

But… all of this is hard when you’re undermedicated, which is why getting optimally medicated is the starting point. When you’re undermedicated you feel sluggish and tired, ill and achey and eating is something you do to get more energy or cheer yourself up. When you’re optimally medicated, you don’t feel the need to keep eating all day long so much.

I think (crosses fingers) I’m currently optimally medicated (I take NDT!) after a longish spell of not being. I finally feel a bit better. I started a real food diet a couple of weeks ago, am already down half a stone and have decent amounts of energy for the first time in I don’t know how long. I even washed my very dirty car by hand this morning, something I couldn’t have contemplated a month ago.

So have hope. This isn’t irreversible; something can be done. But it will take a little while.

jane67 profile image
jane67 in reply to Jazzw

What is NDT? X

Jazzw profile image
Jazzw in reply to jane67

It’s a drug to treat hypothyroidism—the original drug in fact. Natural Dessicated Thyroid. The “natural” bit is somewhat misleading because there’s a certain amount of manufacturing going on to make sure that tablets contain exactly the quantities of T4 and T3 they say they do.

Dessicated—dried and shredded into bits. And there’s the clue—it’s made from pigs’ thyroid. These days most doctors are very reluctant to prescribe it, they’ve been told that synthetic levothyroxine is absolutely fine (which to be honest, it is for the majority of hypothyroid patients). But levothyroxine is only T4 thyroid hormone, not T3 (which is the active version of thyroid hormone). Some people need to take T3 as well as T4. NDT contains both.

jane67 profile image
jane67 in reply to Jazzw

Is this something you can get on prescription ?

Jazzw profile image
Jazzw in reply to jane67

As I said above, only very very rarely. Technically it’s no longer licenced for use in the U.K.

Ukie profile image
Ukie in reply to Jazzw

Brilliant answer 👏

One thing I have been reading about lately and that is not often mentioned as often as high cortisol/insulin resistance is estrogen dominance. It´s when you have too much estrogen relative to progesterone. I have seen more and more articles about this phenomenon and it would seem it´s not just something that happens in your mid 30s, but that even postmenopausal women can be estrogen dominant. That is because the body´s production of progesterone decreases much faster and much more than estrogen production, creating an imbalance known as estrogen dominance as of your mid 30s, plus the fact that estrogen is made from fat so the more fat cells you have, the more estrogen dominant you tend to get. Estrogen-like substances are also found in common household products, beauty products and plastics, so we tend to have more estrogen relative to progesterone than we should have. WIth this in mind, I decided to go off estrogen (I was on transdermal estrogen) and takebio-identical progesterone only. It´s only been a week so too early to really say, but one thing I have noticed is that I have lost quite a lot of fluid in the past week. Not sure if it´s related, or if estrogen can leave the body that fast, but interesting to note nonetheless. I have made no other changes that would account for this.

So far, no hot flushes. I´ve read that hot flushes are caused by low progesterone rather than low estrogen, and maybe without estrogen replacement my body will get better at using the progesterone.

A woman who is overweight and on combined HRT can easily end up estrogen dominant, it would seem. Not only is her body making estrogen from fat cells, but she is also adding extra estrogen on top of it.

I have also added the supplement DIM which helps the body eliminate excess estrogen.

Estrogen dominance causes problems such as weight gain in the abdominal area (which is what I have been experiencing lately), insulin resistance and fluid retention which of course contributes to weight gain. It also lowers testosterone levels which can contribute to weight gain as well. In other words, there is an imbalance where there is too much estrogen relative to progesterone and testosterone.

Recently, someone said to me that the weight gain does not show in my face, but that it all seems to be in the abdominal area. That is also my impression. Plus, what made me do some research is that this person said: "Honestly, you almost look pregnant to me because your breats seem to have increased by at least one bra size". Which is true. When I looked for reasons for swollen and tender breasts, I stumbled upon estrogen dominance. This condition also causes ovarian cysts which I was diagnosed with last year. When I put all of those things together, I decided to go off estrogen. I think it may be a contributing factor to my recent weight gain. Maybe not the only one, but definitely contributing. Plus, my TBG and SHBG levels have increased, and that affects thyroid hormone levels and absorption. Estrogen is known to affect those hormones (=thyroid binding globulin and sex hormone binding globulin).

It might be too early to tell but, so far, I have not noticed any ill effects from stopping estrogen.

Even women who are not on HRT can be estrogen dominant as our natural hormonal balance changes in our mid 30s and estrogen becomes dominant. Some alternative doctors claim that taking HRT on top of this only makes estrogen dominance worse. Estrogen dominance does not mean that estrogen levels are out of range, only that the ratio between estrogen and progesterone is off. You can have low estrogen levels but still be estrogen dominant; it´s all about the estrogen/progesterone balance.

I will work on balancing estrogen and progesterone as well as my adrenal glands (recent saliva test showed a mix of high and low levels which is said to be phase 2 of adrenal fatigue). If blood sugar levels are high that increases insulin production which in turn makes you store fat. Blood sugar imbalances are common in hypothyroid people and contribute to weight gain. Insulin resistance is often treatable with supplements such as berberine, gymnema sylvestre, alpha lipoic acid, chromium and Ceylon cinnamon.

Of course, if T3 levels are low, that would be the likely reason you are not losing weight. But looking into other hormonal imbalances can also be beneficial as there are often several factors involved in my experience. Low thyroid hormone levels will have a knock-on effect on other hormones, creating further imbalances.

Aunds profile image
Aunds in reply to PurpleCat71

Dear PurpleCat71. You make some good points here, my thyroid medication is in top 25% of range but at my last set of bloods my hormones were all over the place, my progesterone was especially low and I’d started gaining weight. So my endo has increased progesterone and added in DHEA which he says will balance my hormones, literally just started taking it so will have to wait 6/8 weeks to get next bloods and to see how it affects me / but I think hormones are the next layer of well-being once T4/T3 and vitamins are optimal. I’ll be interested to hear how you get on dropping the estrogen, do keep us posted.

helvella profile image
helvellaAdministrator in reply to Aunds

my thyroid medication is in top 25% of range

I am not clear what you mean by this?

Aunds profile image
Aunds in reply to helvella

Hi Helvella. Apologies if I was not clear, I mean both my T4 and T3 need for me to be at 75% or higher in the reference range e.g. T3 reference range 3.1 - 6.8 then I need to be 5.7 or over to feel well.

helvella profile image
helvellaAdministrator in reply to Aunds

That helps to make it clear, thanks.

(I read it as you were in the top 25% of possible dosing. That is, there is a magical maximum dose. Which there is not. :-) )

PurpleCat71 profile image
PurpleCat71 in reply to Aunds

I will. I should also mention that my doctor recommended 20 mg of DHEA daily. However, that caused oily skin and acne like you`d see in a teenager. It would seem the body won`t just convert it to deficient hormones, but you could end up with excessive levels of others. My free testosterone went from low-normal to above range on DHEA and I noticed an increase in facial hair….very annoying. It improved after stopping DHEA.

Aunds profile image
Aunds in reply to PurpleCat71

Hi PurpleCat71, thank you that’s very useful to know, how long after you started taking DHEA did you notice those side effects?

PurpleCat71 profile image
PurpleCat71 in reply to Aunds

About one month. I started taking it every other day but the symptoms remained.

Aunds profile image
Aunds in reply to PurpleCat71

Hi thank you that’s really useful, I have started but only in last couple of days and couldn’t find anyone else who had experience of taking it so I was already cautious.

PurpleCat71 profile image
PurpleCat71 in reply to Aunds

Did a doctor prescribe/recommend DHEA to you? It was prescribed to me by an anti-aging doctor who told me it would only be converted to hormones I was deficient in. Well, I ended up with excessive testosterone and not enough progesterone. As a result, I am now very restrictive when it comes to adding hormones. Even if they are bio identical they still have powerful effects and side effects.

Aunds profile image
Aunds in reply to PurpleCat71

Hi PurpleCat71 it was prescribed by the endocrinologist that I see for Hashimoto, he already prescribed Progesterone, oestrogen and testosterone as HRT but he added DHEA as my progesterone was dropping. I’ve looked back at my blood results and he hasn’t tested my levels of DHEA but has listed to test them next time, so I’m going to hold off until after my next set of blood tests to see what my levels are. Thanks for conversation it’s hard to find anyone whose had experience of DHEA with low thyroid.

PurpleCat71 profile image
PurpleCat71 in reply to Aunds

I guess not many doctors prescribe it, so many patients on it self-source it. DHEA seems popular with anti-aging docs, but is not commonly prescribed by conventional docs or even endos. I can say that it raised my testosterone but not my progesterone. No idea why.

PurpleCat71 profile image
PurpleCat71 in reply to Aunds

Ps. Someone suggested pregnenolone might be a better option but I don`t know enough about it.

I agree 200%! When I went off transdermal estrogen and onto progesterone only everything got better :))))

Yes, it can sometimes be as easy as that! Most doctors seem to think that every woman over 40 needs estrogen. From my research, I have decided that is not necessarily true as we continue to make estrogen from fat (and also use estrogen-like substances every day), so additional estrogen can wreak havoc on the body. As I am seeing more and more improvement since going off it (weight loss through loss of fluid, less puffy face, less cravings, less swollen breasts) I am beginning to believe that estrogen did me more harm than good.

Mugs19 profile image
Mugs19 in reply to PurpleCat71

Just to let you know natural progesterone acts as a mild diuretic.

PurpleCat71 profile image
PurpleCat71 in reply to Mugs19

Yes, I have noticed😊

Rowing2 profile image
Rowing2 in reply to PurpleCat71

Hi there, I’m now wondering whether to stop my hrt patches fit a while and see if that helps with my weight issues. I found berberine and alpha lipoic did nothing to help.

PurpleCat71 profile image
PurpleCat71 in reply to Rowing2

Nobody can tell you that. It would depend on if you needed patches to begin with (estrogen deficient), and also the ratio between estrogen and progesterone. Not every supplement works for everyone, but berberine is one of the few that has been shown in studies to be as effective as prescription drug Metformin.

I understand how you feel as going through something similar with my weight, I think it’s down to stress with the pandemic, I have snacked more in the evening but it’s now not shifting.

I was told my ferritin levels are normal - they are 16 ug/L and for a year I tried to increase it but it hasn’t moved, this post has helped me realise why I lose a lot of hair.

Good luck

Sounds like it’s time to take matters into your own hands. First know where you are with tsh t4 and t3 levels via private tests. Then increase levo to see if you can get t3 high in the range. If you don’t look to convert well then add in lio instead. Test again in six weeks and repeat. The aim is simply to get your t3 level high. Lio and levo are possible to self source if necessary and more predictable and reliable than thyroid s arguably. Good luck.

Not as extreme but yes, I feel your pain. I am under constant endo supervision due to having both hyper and hypo antibodies. I gain 2kg in 3 months and they instantly upped my levo. It's worked. My t3 has always been in range (as far as I know). It might be worth speaking to the doc to raise your meds. Good luck.

I do agree with others that it's not as simple as just an increase in meds though. I also agree that calorie counting is futile.

I also understand I have gained almost 4 stone , I had controlled my size by exercise and eating correctly 6 days a week. I am definitely not the same person my confidence is gone and I feel people like my doctor who never met me before all this just looks at me like I am just lazy , I had my bloods done privately and followed the advice about the vitamins I got from here along with an hard fought battle with my GP to increase the levo from 100- 125. The first few weeks I felt much better less tired less aches and pains. As yet no weight loss and my mood is still low. I have to wait a little longer for the next test. I have managed to buy some T3 but not sure if or how to take it. Oh I tried the gluten free it made no difference to me.

Hi, I too encountered a dramatic weight increase, initially a large bulk seem to appear within months, I went from 13 stone to 15st 1lb - hovered a bit and then I went up to 17st 2lbs all in a 4 year period - I’m 48

During this time my level of fitness dropped I swam, ran and trines but was diagnosed with torn stomach muscle and I had been making it worse, my thyroid was all over the place and over a few months increased to 200 mcg per day, and peri menopause arrived …… I was like a crazy person, angry sad, empty and so unhappy with what I had turned into and I really hated myself.

12 mths ago I started oestrogen patches, they were awful, kept falling off so asked the doctor for alternative and was swapped to gel - this made a huge difference to how I felt and my Thyroxine was reduced to 175 mcg per day, but my weight remained the same, I tried all diets, calorie counting SW and few other replacement drink ones

After another round of test, 4 mths ago I was Diagnosed as pre-diabetic, I also discovered that I had been taking my thyroxine incorrect for the past 22years which was impacting the dose, I’d always had with breakfast but now I take with water in the morning after I’ve brushed my teeth then nothing to eat for 45mins after - the doctor explained the absorption process for me and made sense and also if any other vitamins or minerals are taken this also must be after an hour.

I was referred by NHS to a WW program and I attend virtual classes and since being on the program 90 days I have lost 18lbs and losing weight slowly and regularly, like most my job is home based as was before but I struggle with movement so this is slowly increasing too.

I think a combination of watching my sugar and salt intake along with how I take my thyroxine and HRT combination is helping me lose the weight, as I said slow and steady but it is a lot harder as I’m older, my main concerns was my stomach fat, lack of energy and disrupted sleep as this impacted me greatly, I can honestly say I feel much better and happier.

I know it’s hard to speak to your doctor at the moment but please persist with getting the right dose, taking at the right time and also watch what you are eating that may also affect the absorption and speak to them about weight lose support program too as your BMI will qualify you and help you - sending you a virtual hug 🤗 and let us know how you get on…. You’ll get there just might take a little longer

HelloI have hashimotos and went through the menopause 10 years ago at 40. I can really relate to your experience and to how you’re feeling.

Think I’ve tried every diet/eating plan/ exercise program going only to feel worse. I’ve learn so much about thyroid health from this forum along with a couple of other outlets and this has enabled me to take control again.

Then I came across the Human Being Diet ( Petronella Ravenshear)

This brought everything I was trying to do together, healthy eating and exercise in one plan. Like anything it may not work for everyone but it has for me, my inflammation reduced so did my aches and pains, energy levels increased, Ive lost weight and my thyroid health has improved. After such a long time I feel like ‘me’ again.

Best wishes x

I’ve always really struggled with my weight other than when I first went on levo, when it fell off.

I bought this book earlier this year as I sensed my hormones were imbalanced (they were) and it’s been a life saver. Dropped 1st and a half in a month and have kept it off since.

If you’re in peri menopause you can also looking into eating for your hormones. We don’t get taught but we should eat different foods at different points in our menustrual and life cycle to help balance hormones.

Hope you find something!

amazon.co.uk/Hormone-Reset-...

You have my sympathy too….. I had a similar issue and I suspect a lot of people on here have too. Weight gain despite every diet under the sun, and the feeling that GPS just think you are lazy. This was displayed about 8 years ago when I saw a GP about my cholesterol and he looked me up and down with a sneer and said “well, you are on the porky side”. That was it, no mention of thyroid, no sympathy or support, no suggestions for how I could help the situation and I ran away to lick my wounds and changed practice. But I never had the nerve to discuss my thyroid with a GP again. Big mistake…..

Last year I spoke to a different GP, did some private thyroid function tests and asked for a referral to a ThyroidUK endocrinologist who I saw privately.

He said “ why has it taken you so long?”, took me seriously and increased my medication.

Lo and behold, I lost 10lb in 3 months, chiolesterol is down and feel a new person.

Please don’t give up, there are people out there who can and will help. Maybe you need to ask for recommendations for a good endo and get your GP to refer. I went privately as I was lucky enough to be able to and it was worth every penny. Much more valuable to me than a holiday or posh handbag!

Good luck, sending virtual hugs.

If you have private thyroid testing done the amazing people on here will help too.

Xxx

I experienced almost uncontrollable weight gain so can relate.

And I didn’t eat much - I had coffee with milk, small piece of cheese and jam for normal breakfas, for example.

However, I felt like an inflated toy increasing in size.

At some point I decided to get off dairy completely and after that I started to lose volume and weight.

Unfortunate fact is all dairy products are filled with high level of lactating cows hormones that wreck our hormonal balance.

I started to eat beans for the first time in my life - all kind of beans but mainly black and edamame. Beans are almost magical for weight loss.

You received good advice here regarding iron and thyroid medication.

The other thing you need to check your sugar level - you might be insulin resistant or type 2 pre-diabetic which is reversible.

Have you been to your GP, often hard to convince them that it is not the way you are eating but when you do they might examine this further whether due to thyroid issues or something else. I have always struggled but then found that I was insulin resistant, also found that statins make me put on weight. The biggest problem with dieting is that the body decides you are starving it and then tries to increase weight. Loads of exercise helps.

If your weight gain is mostly around your abdomen & your arms & legs remain skinny then it may be worth looking at Cushing's syndrome. It comes with a lot of other symptoms as well as seen on this chart, however you don't have to have all of them.

chart showing symptoms of Cushing's syndrome
PurpleCat71 profile image
PurpleCat71 in reply to PaulineS

But how is it diagnosed? As far as I know, you need very high cortisol levels for such a diagnosis. So, the slightly elevated cortisol levels you see in individuals under a lot of stress are not enough for a Cushings diagnosis, are they? But they can still cause a lot of unpleasant symptoms.

PaulineS profile image
PaulineS in reply to PurpleCat71

Diagnosis consists of several tests including bloods, 24 hour urine, Dexamethasone suppression tests plus other tests to show there is an issue before they even get to scans. Plus Cushing's is due to either a pituitary or adrenal benign tumour or long term steroid use. The Oestrogen contraceptive pull, HRT & Biotin found in some supplements can also give an elevated result.

PurpleCat71 profile image
PurpleCat71 in reply to PaulineS

Does this apply to so called physiological doses of steroids as well (up to 40 mg of HC, 10 mg of prednisone and 8 mg of Medrol) daily, or only supra-physiological doses? I am asking as some alternative/functional practitioners routinely seem to put their patients on these meds to treat adrenal fatigue, telling them that is needed in order for them to be able to tolerate T3 meds. I have read about patients being told they need to take HC, pred or Medrol for life as their adrenal glands are "burned out". They are far from reaching the levels needed to be diagnosed with Addison´s disease, cortisol levels can even be low-normal, but they are nonetheless told they need to support their adrenal glands. When asking about side effects, they are told that is not a concern when taking phyisological doses of steroids. There seems to be two schools of thought here; on the one hand, doctors like Dr. P who recommended adrenal glands, on the other hand anti-aging doctors prescribing HC, pred or Medrol for adrenal fatigue. But I guess the end result is the same: you are taking something that either contains cortisol or is converted to it. I recently read about someone who had been on HC (prescribed by doctor) for almost 10 years to treat adrenal fatigue, she had gained a lot of weight and was displaying many symptoms of Cushing´s, but was told by her doctor not to worry as she was on a physiological dose of HC (30 mg/day). I have been wondering more and more whether it is compatible with good medical practice to recommend either glandulars or prescription drugs for adrenal fatigue.

PaulineS profile image
PaulineS in reply to PurpleCat71

Adrenal Fatigue is not a recognised medical condition so if a "doctor" or neuropath is suggesting steroids then they are being negligent in my view. Adrenal Insufficiency is a recognised condition which is life threatening & is due to the auto immune condition Addison's or because someone has had either an adrenal or pituitary tumour removed & the the glands have not produced either ACTH or Cortisol following surgery. TB in the past also caused Addison's. The treatment is life long steroids which if stopped the person will die within a few days. Every cell in our body requires cortisol, it's an essential hormone. Over time people treated with steroids when they don't need them or haven't been closely monitored will find that their adrenal glands no longer work & so they become dependent on the steroids. You will often find that people treated with steroids for their RA or asthma find that they can not come off them due to their adrenal glands not producing cortisol. This became an area of great concern with the leading Endos so that last year a Patient Safety Alert was produced & a new steroid card launched to educate medics that if a patient was on steroids they might have Adrenal Insufficiency, especially with Covid being around, the patient was at very high risk of dying because doctors weren't aware of this. All of the documentation produced by the Society of Endocrinology recommends that the AI patient is on the lowest dose possible to maintain life & function, this is around 15-25mgs of Hydrocortisone or 3-4 mgs Prednisolone, anything higher than that is seen as over replacement. It is possible to measure cortisol levels during the day to ensure that patient is on the correct dose.

So steroids given when they aren't needed will either cause symptoms of Cushing's or Adrenal Insufficiency, plus the damage that they can do to the body is huge. With too high levels of cortisol you can end up with multiple fractures, several members in the Cushing's groups have had spontaneous fractures with no known cause, so fractures of the pelvis, feet, spine & legs. Heart attacks, strokes & blood clots can all be caused by high cortisol. There are very few of us who are able to live a "normal" life when we are on steroids, there is a lot of muscle & joint damage but no one seems to now why. They can be a good treatment but they are not the miracle drug some think they are! These articles may help too. sciencebasedmedicine.org/ad...

hormone.org/diseases-and-co...

les121 profile image
les121 in reply to PaulineS

I'm a traditional pear shape so always had a bigger bottom half...but no I look like a mud wrestler allover 🤣

I feel your pain regarding weight increase. I had the same with 4 stone gain. I was lucky in that my GP did a range of tests so found out I had high antibodies therefore autoimmune disease which needs a different approach.

There is no single solution that suits everyone so I experimented by stopping my Levothyroxine for 1 month and my weight dropped 7lb with no other change in diet or exercise. I then managed to get T3 Thybon Henning and started on a low dose 5mcg x twice daily (breakfast and afternoon) with my Levothyroxine 100mcg x 1 daily (bedtime). I also started going gluten free, dairy free, removed carbs and red meat, processed meat, alcohol (autoimmune diet) and have lost 2.5 stone in 3 months with no change in exercise. I can't prove which change has made the most impact but its working and I feel a lot better. I've just ordered the full thyroid panel test including key vitamins from Medi Check to check progress. My last GP test results reduced my TSH from high to almost 0 and my T3 to 75% of upper range.

There is so much good advice on here - you need to almost create a project plan of what tests to get, what approaches to try. If you record everything you then have "evidence" to show your GP or Endocrinologist (NHS or private).

Good luck

😃

I feel for you. I had exactly the same. I had never been overweight in my adult life. I could tell you my weight any day, unless I was pregnant of course.

But once diagnosed I started to gain by degrees.

I even had to have my wedding dress 'enlarged'. I had bought it in February for a July wedding and I had been gaining weight since the day I bought it!!! I can see it in my wedding photographs!!

Of all the lowthyroid symptoms, for me, the worst is weight gain. I can't take the weight gain.

I wish I could help you, but I can't, except to say low carb diet and add in some fasting. Fasting works for me, but I have to be very careful when returning to eating again.

Today for instance, I was 12st.3lbs yesterday and today I am 12st.5lbs!!!! I did have a Magnum yesterday, but it is a little ridiculous gaining 2lbs for a Magnum isn't it??????

Good luck.

Yes, the dreaded weight gain between thyroid issues and menopause its a relentless monster and for me no amount of medication seems to make a difference and the doctors blame the patients for the issue. “Sigh”

Hi les121, I'm also on Levotyroxine 50mg a day and I've also gain weight like nothing on earth. I've always been large, between 10/11 stone but the past 5 years my weight has just went out of control and like yourself I'm not happy with the way I look. Lately I've got another problem, I could sleep 24/7 which is not me. Called Gp and she said to get my blood tested but can't waking early enough to go. My diet is not the best as I suffer from IBS so there's days I don't eat, I try when I can to eat healthy foods.

Hope you get some answers.

Yes. I did. When we hit the right dosage on my synthroid the weight gain stopped but I didn’t lose an ounce. Doctor said that part was up to me. I went on a healthy diet and lost 40 pounds. 15 years later I started gaining again not watching the diet at all. Went through an illness, a broken heart with my daughter, and a broken relationship and just didn’t care about it. Finally after a botched and awful full knee replacement and a new doctor who will eventually do my other knee, it was time to lose some pounds. I couldn’t do it on my own, so I went to Jenny Craig three months ago. I’m down 25 pounds with 35 more to go. I’m only doing five days a week and on my own with healthy choices two days. It’s going slowly but it’s going. Having less weight for the second knee will help the process so I’m hoping. I’m sorry I don’t know how to convert pounds to stone for you. You are right when you say you lose your looks with extra weight. I know I did. But I believe we get slowed down for a reason we may never know. Best wishes, Les!

Hi there 🙂I empathise totally. Similar here. 51 and post menopause by 2 years. Was on 100micro Levo and 20 of Lio and not too bad really. The pandemic has made it worse even though I have been in continuous quarantine (I work overseas and commute).

I’ve put on nearly 3 stones. I think the menopause input is the worst culprit. I am now on 75 levo (which is low for my body weight) and no Lio (as a trial and freaking out from GP as usual over suppressed TSH due to T3). Now 6 months on that dose and TSH is still suppressed but T4 is in a good high end range, T3 lowish but ok. All vitamins were good but I prefer iron to be mid range.

from what I have read the menopause has a massive effect on metabolism and quite simply we will need lower calorie intake. I have been following the no added sugar principles and modified my diet to eat smaller but more often and fresh ingredients. I have also done a lot more walking. It took one month to see any progress at all but at last I have lost 5 lbs.

another danger with menopause (on top of all the complications you can get with poor treatment of thyroid) is that you lose your most protective hormone and become at more risk for other nasties.

keep at it and hopefully you will see some weight loss but it may be very slow like mine. Good luck 🤞 menopause and thyroid (especially in the uk!) really suck and night sweats and hot flushes suck when you work on an oil rig and can’t open any windows or walk around in vests and shorts.

oh to be 21 again 😭

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