Hi everyone. I'm coming on here for some advice from people who will get what I'm going through. I have had underactive thyroid for about a year and a half now after having a baby. Over the first few months of my thyroid being underactive and under treated I gained a lot of weight. As the levothyroxine slowly got increased I started to try and lose the weight. A diet and exercise helped me lose a stone in weight. During this time I had episodes of being over treated with my levo which caused anxiety and other problems so my dose got reduced. Over the past 6 months I've gone into a stricter paleo diet, exercise 5 times a week cardio and weight training. I lost a bit more weight. Now all of a sudden my TSH kevels have gone high, um now under treated on my medication and I've put on a lot of the weight I'd lost despite eating super healthy. My hairs been falling out, low mood and high anxiety, poor sleep and my tummy is constantly swollen and sore (despite gluten and dairy free paleo diet). My levo is now being increased a small amount. I feel so defeated and so frustrated. I try so hard to be healthy to lose the weight and now it's back fired and I'm gaining it all back because my levels are off. This is so hard and I feel like all my hard work keeps going to waste. Is this just me or is this something that's happening for you guys too? Just need to know if maybe I'm not alone in this? Any support or advice from you guys would mean so much to me right now because I feel at my wits end! Best wishes to all.
It's miserable, isn't it? And very frustrating when people say "just eat less and move more and the weight will drop off". Because it doesn't.
No, you're not alone. But in my experience you have zero chance of losing weight unless you are optimally medicated. And that means you need to have regular blood checks, to ensure your levo is at the right dose; and to test your key nutrients - ferritin, folate, vit D and B12 - as your levo works best when these are nice and high.
Your doctor should be arranging blood tests at least once a year ANYWAY - but just testing TSH, or TSH and free T4 isn't good enough. You need free T3 testing as well - at the same time - to see how well you convert.
Don't be tempted into diet shakes - they contain soy which is no good if you're under-active. I do the intermittent fasting thing where you eat all your calories within a restricted window - in my case between mid-day and 7pm, and my weight is stable. I have to go down to OMAD (one meal a day) to lose - but then my lood pressure goes very low. None of this is easy!
My heart goes out to you, I’ve been there too. Couldn’t understand why I was putting on weight even with a really strict diet and 4 PT sessions a week after I quite smoking. It’s actually the worst thing I could have done! Exercise depletes T3 faster than anything and a restrictive diet can help with inflammation and gut health but can also be a strain on your body. There are many different schools of thought out there with regards diet and what helps. Personally I think it is different for everyone and you need to find what works for you. Google Ray Peet - his approach helped me at one point it maybe worth a try. If you can switch to low intensity exercises like yoga and swimming, walking etc. also, it can be very confusing but being under medicated can cause anxiety and similar symptoms to being over treated. Did you have your bloods taken when they said you were over? You need T3 as well as T4 and TSH checked. Have you had antibodies checked as well? As if it’s Hashis you will fluctuate. Levothyroxine isn’t a Treatment that works for everyone and you won’t necessarily find an honest conversation about that with your GP/Endo especially in the UK (not sure whet you are) if you are in the UK, I am happy to send you details of a private Endo who has helped me considerably. PM if you would like. Xx
It sounds as if you are undermedicated but without labs plus ranges it's difficult to say more other that. Find a medic who understands thyroid disease or, as I did, take advice from experienced members here.
How much levo are you prescribed?
It sounds as if your GP may be dosing by TSH....wrong.
Many hypothyroid patients have Hashimoto's (see TUK link )which can be helped by a GF diet though that doesn't seem to have helped you so far.
Many of us on the forum cannot tolerate levothyroxine and need to add T3.
It is possible that you are not adequately converting the storage hormone T4 to the active hormond T3 required in a constant and adequate supply by every cell in the body.
Again labs would help identify this....high FT4 with low FT3.
Getting hold of copies of your thyroid labs which by law you are entitled to request from your surgery, or by having private tests done (see link above), is where to start.
You need to test TSH, FT4, FT3, folate, ferritin, vit D, vit B12 and antibodies.
Post results and advice will follow.
Right now you feel terrible but with the correct medication you will recover....and lose weight! It may take a while so you need to be patient, sadly there is no quick fix as in paracetamol for a headache.
Lab results first!
Just looked at your profile and see that 4 months ago you were advised to have full thyroid tests carried out. Suggest you re-read the excellent advice from SlowDragon .
Do you have results from those tests because without those, evaluation is impossible.
Thanks DD, yes I did get tested and my GP will only check TSH levels. I asked him to check T3 and T4 which he eventually did and it did show poor conversion of T4 to T3 despite low TSH levels at that point in time (November 2019). It seems I need to be on a high dose with really low levels under 0.5TSH to get my T3 in normal range, but the problem I then have is the anxiety palpitations torible sleeping and irritability that comes with being over medicated. Right now my TSH is 3.58 hence all of my awful symptoms and the weight gain after GP reducing my dosage over the last few months. Have decided to bite the bullet and pay to see a private endo in the hope that might help. Many thanks.
Your problem appears to be that your conversion is poor and you most likely need T3
Your TSH per se is not the cause of your symptoms but a consequence.
The reason you need a high dose is most likely because your poor conversion cannot produce enough T3 from a lower dose of levo....OK you understand that.
But.... that high dose of levo, most of which isn't being converted is causing problems....anxiety etc. What was your FT4 result,...high I guess!
As I suggested above you/ your medic are focusing on TSH. Did you read the link I posted with the relevant research paper?
Your conversion is poor, that seems to be established... this is either the consequence of nutrients being below optimal or of a genetic polymorphism. You can test this privately - refer to the ThyroidUK I posted above.
A Dio2 polymorphism can be inherited from one or both parents....a homozygous result (from both parents) has a greater impact than a heterozygous result? I tested homozygous and that helped me move on to the next step towards recovery
A positive result may help convince an endo that you need T3.....but mention T3 and most medics flee for the hills!
Your GP is clueless, you may be lucky to find an endo who is more conversant with thyroid matters but as many here have discovered that is not always the case!
I'm not a medic so can only speak from my own experience. When I could barely function and medics had run out of ideas I found this forum and the best advice and guidance I could hope for, I have a fairly rare thyroid hormone condition which would most likely have killed me were it not for amazing people like SlowDragon who guided me and helped me find the answers that had eluded both me and my medics,
You obviously have to decide for yourself what you do next but be prepared to find that there is no quick fix... but with good advice, much patience and determination and a lot of reading you will feel better.
Focus on getting those results then post them here.
I have had blood test for vitamins deficiency a week ago and nothing showed as deficient and my GP will only check TSH levels for my thyroid. Im taking vit d3, B12, magnesium, zinc and calcium. I take the calcium zinc and magnesium at night and the others at lunchtime. I asked GP to check T3 and T4 a few months ago which he eventually did and it did show poor conversion of T4 to T3 despite low TSH levels at that point in time (November 2019). It seems I need to be on a high dose with really low levels under 0.5TSH to get my T3 in normal range, but the problem I then have is the anxiety palpitations trouble sleeping and irritability that comes with being over medicated. Right now my TSH is 3.58 hence all of my awful symptoms and the weight gain after GP reducing my dosage over the last few months. A constant yoyo effect. Have decided to bite the bullet and pay to see a private endo in the hope that might help. Many thanks.
BEFORE seeing any thyroid specialist endocrinologist, but especially if paying...essential to get FULL thyroid and vitamin testing (or get results from GP)
All four vitamins must be OPTIMAL...GP will only treat deficiencies
Vitamin D under 50nmol is in sufficient..GP should prescribe
Vitamin D under 25nmol is deficient
Optimal vitamin D is 80-100nmol
You are legally entitled to copies of your blood results and ranges
Thyroid blood tests should be after minimum of 6-8 weeks on unchanging dose levothyroxine (and always same brand levothyroxine)
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
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