I wanted to know how are you dealing you weight gain with hypo? I've been diagnosed with mild hypo 2 years ago and put on 75/daily Levo but I see absolutely no difference in my weigh except of putting more of it. It's so depressing! I'm not vain but it's just extremely difficult to look at myself in the mirror. Before the illness, I was very slim, quite active and bubbly, now I'm overweight, sad and cant be bothered to move. Before the illness I was able to eat anything with no problem and the only problem I had was putting any weight on and actually being too skinny at times.
Do we hypo are destined to be larger or am I doing something wrong!
I hope this question makes sense and I don't offend anyone!
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bajmon
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Its hard, I have gained multiple stones. I accept some of it is age and I know I'm not going back to what I was, but something closer would be good.
I am improving nutrition, optimising vits and exercise. I'm wearing really comfy elasticated clothes (which I now love) , and selling my slinky silky skinny sized clothes on ebay as they are actually starting to get on my nerves now. I'm hoping if I get my levo optimised and TSH stable I may have a starting point. Its tough isn't it!
I used to get teased for being skinny, I never saw it myself as I always felt my legs were too fat for me! Oh to be back there.
(I also don;t feel I look like me now - my eyes are swollen too)
sorry to hear your having problems but I think some of it comes down to genetics as well, my sister has just been recently diagnosed with under active thyroid and my aunt has it, both me and my aunt never have struggled with weight issues my sister has always struggled, she seems to have my dads family genes where as my mums family were all slender. No matter why I eat I don’t seem to gain weight, I know it doesn’t help, but I have seen first hand the difference in family genes even with the same conditions. I am very active even though I struggle some days physically but I seem to burn through calories even doing nothing.
I really hope it stays that way for you, as it's one less change to have to deal with. I was fine until just a few years ago, oh to go back 5 years. I have no thyroid diagnosed family members to compare to although it is genetic when I tested, so they do have their influences that come out even if you don't think specific genetic traits are in the family!
I'm sorry you are having a problem with your weight
I am not medically quaified but I think that sometimes we're not taking sufficient thyroid hormone replacements to increases our metabolism and slowy, slowy there's weight increase. If you can get some T3 prescribed, you might find that a T4/T3 combination may help or T3 alone.
I asked recent my Endo as it was suggested here that I'm a poor converter. He said I'm actually a good converter and if I want to, he can try my on T3 but I must absolutely have no pregnancy plans which I'm hoping might finally happen. I'm so confused all together. I know several very slim hypo but not personally so have no opportunity to ask such personal questions like their illness, meds and diet.
Maybe trial to become pregnant first and then you can ensure that your thyroid hormone replacements will restore your normal health but it might take a few adjustments in dose for you to get to the optimum dose.
75 a day is a low dose unless you are petite? Likely you are under dosed... is it fat or fluid you are retaining? When I was under I put on loads of mucin which I pee'd off within weeks of starting T3.
Could it be that the hypo has coincided with peri meno/ menopause which means your other hormones are out of whack too?
Pop up your current test results with ranges or better still fill in your bio and the advice will be free flowing 🤗
I am/was a petite person 1.60m and normal weight 50kg before the illness. Now 65kgMy last bloods were in Nov and I'm still waiting for next ones. I have no idea how to find my previous posts here to get the results back again but as far as I remember my TSH back then was 0.7 on 50/75 alternate days. Though this was only a moth after another test which showed 2.32 TSH with no changes made to Levo.
I had all sorts of hormone tests done a year ago and I was told they are all like at 20year old and I'm 42. Which ones would you suggest though to do? Perhaps that were not included. Honestly, I'm so lost because I thought I have done really knowledgeable Endo privately but he's contradicting everything that's ever suggested here.
Hi, If you click on your name either in a post or top right it takes you to your bio and old posts
So your T3 is on the low side, I looked back at one of your old posts that just show TSH & T4 levels which doesn't help to work out how well you convert, perhaps you need to ask your Endo if you could try a little T3 which could make all the difference if you have already optimised your vits and mins etc.
You've a little head room to up your T4 a little which might help a little? Maybe just 50-100 mcg per week to push your T4 to the top of the range, if no good then T3 is the way forward
If your sex hormones were good last year it's unlikely to be the issue at the moment but the jolly old peri meno will start to creep in over the next decade and can cause hypo like symptoms 😩 trouble is with things still fluctuating it is a bit of a moving target!
I thought that my last TSH was to low at 0.7 but Endo said it was good. He always said I should keep it at 1-1.5 so I'm not sure why he's suddenly happy with this level. Last year at this time of the year I was symptomatic again and a different Endo I was seeing at that time moved me from 50/75 alternate days starting to 75x6 and 100 on Sunday. I sin felt even worse and my TSH went to 0.3 so I'm not sure how 0.7 is good! And had it changed from 2.3 to 0.7 with no changes.I asked this current endo about vits and he said there's no prove supplementing changes anything when here everyone is mainly taking about vits being optimised. Honestly, I see no resolution. Though I appreciate everyone's help here!
Here a party of last email from my endo
"Supplements; i am not sure- you could continue with what you having but no evidence for or against
Re
T3 conversion; the fact you suppressed your TSH on higher dose, suggest you convert well T4 to T3 and the genetic mutation you read about on the internet is very very rare and when linked to T3 treatment, the evidence was not supportive
We can always try with T4+ T3 but you need to self und and make sure you have no pregnancies planned as no T3 in pregnancy or family planning"
"the genetic mutation you read about"- I don't know what he means by this as I want taking about any migration, just said it was suggested that I possibly convert poorly.
Wow, how to unpack some of the Endo's wisdom! I'm sure you have read here that we need optimal levels of vits/ mins and iron to be able to stand a chance of making good use of T4... medics don't do nutrition... crazy but there you have it!
When you have taken your blood tests have they always been 24hours after last dose of T4 and before 9am when TSH is at its height? Could it be your 0.7 was a later am or afternoon test? It makes all the difference as TSH drops rapidly...
If your T3 is only ever in the 4's it's likely you need a little more to make you function properly
As for these statement 🤯
T3 conversion; the fact you suppressed your TSH on higher dose, suggest you convert well T4 to T3 and the genetic mutation you read about on the internet is very very rare and when linked to T3 treatment, the evidence was not supportive
Bo##ocks! It's your T4 to T3 ratio that will tell you this not your TSH level!
Also rather a lot of us have wonky genes here so not that rare! Evidence is that most of us would have thrown in the towel if not for T3!
We can always try with T4+ T3 but you need to self und and make sure you have no pregnancies planned as no T3 in pregnancy or family planning"
If you are prescribed by an NHS endo it's free, many people here self fund or source privately as it can be a total pain in the arse dealing with the NHS!... I self started on T3 whilst waiting to see the NHS Endo
I have no idea if there is any truth in that... pregnancy can often lead to hypo as baby takes priority and leave mum short, so you would assume a would be mum lacking in T3 is less likely to become pregnant or have a good outcome??
I'm thinking at 42 the pitter patter is not something you are seeking?
Hi. I really liked you reply to the poster! Somehow we must retain a dry sense of humour throughout all of this don't we. Why do you think it is that Endos can make such comments with a straight face & actually believe the rubbish they say?! And how is it that you and other very knowledgeable people on here, who are presumably not Endos, actually get all of this and they do not?! I follow Paul Robinson on Youtube who is so knowledgeable, and I've got more help from him and people on here than from any GP or Endo (NHS or Private) in 12 long yrs since my original diagnosis. I'm totally despairing myself after the last private Endo I saw in Oct '22 further reduced my trial of T3 from 30mg (then 20mg) to 10mg, alongside a reduced Levo dose of 75mg, and yet I still have horrific Hypo symptoms with the faulty DIO2 gene!! Diagnosed 2011, and for 12 years I've told different GPs & Endos that I feel horrific on T4 Levothyroxine (with doses yoyo'ing from 125 to 100mg), but they've just shown me the door every single time 😞 I was then Specialist diagnosed with ME/CFS a few years ago, and told my Hypo was badly managed by the NHS. Who would've thought it!! Finally I saw someone privately last year who agreed to a T3 trial, but despite my reporting no change in Hypo symptoms on 30mg then 20mg (alongside 75mg levo), they still further reduced my T3 to 10mg, rather than try me on a higher dose (duh) because of these results:
TSH: 0.08 (0.27-4.20) *my TSH was always surpressed on T4 only treatment too & always Hypo symptoms, not Hyper.
FT3: 3.95 (3.1-6.8)
FT4: 11.5 (12.0-22.0)
No energy to add my additional results, and others on here have cast their equally expert eyes over them previously in the chat. I just wanted to say thanks for making me chuckle because so often there's so little to chuckle about in this perpetual 🤡 show! 🙂
You know, as for the ME/CFS I believe it's strongly associated with our hormonal imbalance and they know absolutely nothing about it. The nurse who run few video calls with me on ME/CFS has discharged me telling me that I'm knowledgeable enough to make lifestyle changes to manage my symptoms and that my thyroid needs better managing. No way! It's also beyond me how Endos are just happy to pump us with Levo and leave it at that. There's is no specialists here to know enough about overall thyroid issues and managing it by balancing the nutrition even though so many thyroid issues start from the nutritional imbalance and deficiencies.You might fall off the chair if I tell you that when I was finally diagnosed with Subacute Thyroiditis in 2021 (post viral infection which can last 2 years and in my case has), my Endo suggested he can try me on Levo which will definitely make me feel better. At this point I agreed thinking it's medication, one which I'll take for a while like any antibiotic etc. There was no explanation on what it is and what this means longer-term or how to take it either so I was taking it at lunch time!
Furthermore, if t you read about ST, there is strong advice to not treat patients with Levo as thyroid, in most cases, will recover! Now I don't know if it would ever recover and I'm in constant TSH fluctuation! I forced in few thyroid scans and in one of them I was told my thyroid is a little too small for person my age/size though Endo didn't explain what this actually means. Was the thyroid damaged during the illness which can happen, has it recover, can it function sufficiently on its own? I can't get anywhere. I might go privately to a specialist in Poland where I'm originally from (21 years living in UK so half my life), as Poland has some experts in thyroid due to a huge number of post Chernobyl radiation.
can i ask a technical ( nit picky ) question about your ME diagnosis RhainR ?
"I was then Specialist diagnosed with ME/CFS a few years ago, and told my Hypo was badly managed by the NHS".
Since ME/CFS is a 'diagnosis of exclusion' .. how can a specialist in ME diagnose ME at the same time as admitting they believe a condition which is known to cause similar symptoms to ME is inadequately managed ?.... if they haven't excluded the hypothyrodsism as the cause of the symptoms .. then they haven 't excluded "all other potential causes of the symptoms ?
Very good question. I wouldn't get my ME/CFS diagnose if I want under Endo at that time and after free video appt with the nurse, she decided I need to be managed better for my thyroid in the guests place.
Hi. After 18 yrs of symptoms I urgently needed a formal diagnosis from a Specialist - (for personal reasons I don't want to go into, but please read my reply to tattybogle for info). With all due respect to your Nurse, I do not think a Nurse is qualified to make a decision on anything related to Thyroid disease or ME/CFS. The vast majority of GPs have absolutely no idea either. I will read your reply to me in more detail and send any further reply, but I'd recommend you go Private if you can. Good luck 👍
Hi. Well I'm not a Doctor, and can only tell you that there are multiple causes of ME/CFS, and all of my Drs over the years (i.e Infectious Disease Specialist, FMDr and Endo - all Private) have stated that my Hypothyroidism has been badly managed from the get go, and is a causation of ME/CFS. More below. The NHS were involved from the start, and refused to listen to me or my symptoms. It was the NHS who refused to test my Thyroid function for 7 years after my Son was born in 2004, despite me reporting Hypo symptoms, and I was only tested in 2011 after begging my then GP to test my Thyroid function. They then proceeded to urgently place me on T4 only treatment for the following 12 years to date, but with no improvement in my symptoms. Basically I've been gaslit for 18 years. Since 9/2021 I am finally on T3 (Liothyronine) via a Private Endocrinologist. I tested positive for the Faulty DIO2 Thyroid Gene in 2022, but the NHS don't even know what this is, let alone the impact and what's needed!
ME/CFS is not the same illness as Hypothyroidism, but there are clearly some overlapping symptoms (i.e Fatigue). It was an Infectious Disease Specialist (Private) who formally diagnosed me (although CFS was on my NHS Record for 7 yrs prior to my eventual formal diagnosis without one GP telling me or bothering to look into my symptoms!). Since 2020 I've been under a Private Functional Medicine Dr, who also confirms it is the case that some Hypo suffers do unfortunately go on to develop ME/CFS. I've met several co-sufferers online, including on Healthunlocked.
ME/CFS is a very complex and misunderstood 'multisystemic' disease of Mitochondrial Dysfunction, for which there can be multiple causes, including these main ones:
- Chronic lack of sleep, and any sleep is unrefreshing
- Poor thyroid function (**see below)
- High functioning/High drive personality type (never switch off)
- Acute & long term stress
- Gut issues
- Meds/Vaccines/Ammalgams (*I am V damaged from childhood & have mercury poisoning & heavy metal toxicity). I'm the generation when - Toxic environments & infections
Sadly, I ticked each of the above points - and suffered from Post Exertion Malaise after any activity (still do), and unrefreshing/poor quality sleep (still do) - and all things considered I met the diagnostic criteria. Wish I hasn't because, although there are things one can do to try to manage the symptoms, there is no magic bullet and it truly is like serving a life sentence, without chance of parole. Still hoping for a miracle in terms of research.
**With regards to poor thyroid function, Consultant Endocrinologist Dr Kenneth Blanchard estimates that 20-40% of Western women are Hypothyroid, and Dr Sarah Myhill (number one authority on ME/CFS in the UK) says that this alone is a cause of ME/CFS, and it also makes us susceptible to a major trigger - namely, infection.
Hi ladies, no offence however this post was to help me understand topic in my initial question and turned to a conversation on another topic. Please feel free to start new conversation post regarding ME/CFS as I'm getting so many notification emails and this is covering my initial discussion 😁 RhianR tattybogle
Its so hard I also gained lots of weight but my hypothyroidism brought a special friend “arthritis” to the party and between the two it has destroyed my health… Wish I had a magic wand!
Sorry to hear that! Have you tried aqua aerobic? It really helps people with joint problems. My mother in law lost some weight doing that and she's post serious spinal surgery so also couldn't do any exercise. I'm just lazy 🙈 But in all seriousness, I've got chronic fatigue so as soon as I do bigger workout, I lat in bed in pain the next day. Having said that, since I listened to people here in supplementing vit B12 and D , I've been much better!
My "arthritis" improved dramatically after taking Vit D and Iron . (GP) diagnosed deficiency after endo basically said no problems with thyroid and suggesting I saw GP for possible ME diagnosis. Before vit D and iron I could hardly walk getting out of bed on a morning, feet took a while to wake up . I also walked regularly around this time too and the more I walked the worse I got. You possibly have already looked into this so apologies for mentioning it if you have already explored this avenue. Being hypo isnt much fun is it? How I wish I had resisted RAI and not given in . My weight has increased too after RAI up a stone, sorry dont do kg and now looks like I have type 2 diabetes. So frustrated with it all and menopause now thrown in too. 😕 yes I wish we had magic wands too. Take care all
I'm very sorry to hear that! Life isn't fair! My mum has terrible case of psoriasis and has outbreaks on her hands every month. It's extremely painful. Her skin is peeling off but she feels awful so thinks it's all over her internal organs/joints too.
I was only gluten free and the benefits were not that visible at all. I don't started to be more symptomatic again. I was tested for gluten intolerance in November and it's negative . I've been on lacto free milk for years and stick to that but if I have any cheese, I have no issues. Yes, your right, mums illness is autoimmune, hey perhaps had type 2 diabetes as well.
I was diagnosed with ME/CFS but I'm reluctant to believe this. Since I took advice here and started to supplement B12, D, magnesium and zink (my own research to stop my sugar cravings), I feel generally better but I'm still terrible in remembering to take all of those. Matt I ask which iron and D are you talking? I'm currently not taking any iron as suggested here that's it's not something you can decide on your own and GP and Endo see no issue there. I try to have some pate though.
I just wanted to add that there is no fear of offending anyone with your post, nor do your words sound vain. It is clear that you are simply frustrated.
Hello - sorry to hear you have been going through this. It sounds very similar to my experience. I've always been skinny despite eating like a horse. Then around the time I was diagnosed with Hashimoto's I put on weight and this continued despite Levothyroxine until I had gone up two sizes. I tried gluten free and lactose free diet but it didn't seem to help anything much. I also had terrible fatigue and for this reason I saw a private doctor and switched to NDT. This has given me so much more energy and I've also lost weight and am able to fit into my old clothes. I feel more like my old self. It has been a big relief to me to feel better and to find that I wasn't just lazy or eating too much, it's very easy to blame yourself and think that you are doing something wrong but it might be that you are not getting the medication, supplements or whatever that your body needs. I hope you find something to help you soon - maybe T3 or NDT or better supplementation.
NDT is natural desiccated thyroid, I take a brand called Armour which is made from pig thyroid - it contains all the thyroid hormones and some people do better on it than on a mixture of T4 and T3. Before synthetic hormones were developed NDT was the standard treatment. I don't think you can get it prescribed on the NHS though so it is pricey but it has been worth it to me to get my life back. If you search the forum for NDT then you will find information from people who are far more knowledgeable than me.
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