My story so far.. Always been a slim size 8/10 turned 30 thought biological clock ticking away, got pregnant, went back to work 5 months later, lost baby weight very quick, all back to normal, looked good, everyone commented, then bang GP said I had UAT put on Levo, within 6 months, started putting on weight slowly but lots (for me) went to a size 14 within couple of years, all blood tests showed back to normal, but why am I big, GP said age and lack of exercise.... I had a toddler!! I then went on to have twins, got bigger lol but more because of pressures of 2 babies.  My children are 16 and 12,12 now.  I have seen many specialist about my swelling now, even endo put me on t3 , but to no evail. I recently saw a vascular surgeon who said its my varicose veins causing my swelling (due to pregnancy) NHS won't do so have to go private, am waiting to hear if Bupa will pay. I know people's bodies change after children but mines getting worse, I'm blaming all my hormones and synthetic Levo, I'm at a loss as its getting me down this long long battle of getting my health back on track.  The vascular surgeon said it could also be lipodema 😱

I don't really know what my question is here, just wanted some advice I guess. It's like some people blame the mmr it's a coincidence the swelling happened after being put on Levo. By the way I'm not 47 been on t4 for 16 years been on t4/t3 for s year

29 Replies

  • Hi Mandys. I've read through earlier posts of yours - think the last time you posted about your dose was about a year ago when you were on 100mcg levo and 20mcg of lio. Is that still your dose? Any recent blood test results to share?

  • Sorry they were previous results above. These are newest back in January 2016.

    T4 13.4

    T3 5.5

    TSH 0.02

    Doesn't want me to up Levo as will put my TSH even lower

  • Hi

    I've been dropped to 75 Levo and 20 lio

    Free t3 4.2 (3.5-6.5)

    Free t4 19.3 (9-24)

    Tsh 0.27 (0.35-5.00)

  • Why did they drop your Levo? Was it because the TSH was 'too low'? That's usually the problem, they are so scared of a suppressed TSH that they consistantly Under-medicate the patient.

    But a suppressed TSH is not a problem if your FT3 is still at a reasonable level. And yours isn't even mid-range! That's why you can't lose the weight, your FT3 is too low. Most people need it up the top of the range - some even need it slightly over the top.

    Have you had your vit d, vit B12, folate and ferritin tested? All these need to be optimal - not just in range - for your body to be able to use the hormone you're giving it. Doctors know so little about thyroid, we really have to read and learn for outselves. If you just leave it all up to them, you will stay ill. :)    

  • I will look at my medical records later and see as I can now access and few my test results.

    I was lowered from 100-75 about a couple of years ago as I was over range on t4 and felt horrific - even slower than normal!

    I know my vit d has always been low have got a supply - last tested by endo last year just above range. I've also just come back from a lovely sunny holiday so hope levels have been upped!

  • OK, just seen your latest labs. So your FT3 isn't very high, is it. Only just over mid-range. It was your T3 you needed increasing, not your T4. The TF4 is bound to be low once you're taking any form of T3. And the TSH is bound to be suppressed, but it really, really doesn't matter. I suppose your endo thinks it will cause osteoporosis and/or a heart attack! lol It really won't. But you really do need your FT3 to be higher because you're still sympotmatic.

  • Did you look at the January results?

    T4 13.4 (9-24)

    T3 5.5 (3.5-6.5)

    TSH 0.02 (0.35-5.0)

    Endo wants me to take 15 lio a day breaking it up to 5 3xa day

    I can't break up 20 to 5 so take 10 am and 10 pm

  • Yes, those are the results I was looking at. Your FT3 is only just over mid-range. Your dose of T3 is too low.

  • Oh right!! Sorry- what dose do you think?

    I'm not seeing endo until july

  • Well, like all hormones, T3 has to be built up slowly, with half or quarter tablet increases at a time. There is no knowing why dose you will ultimately need.

  • My hormones are shot. I'm sure if I hadn't been put on Levo after my first birth I wouldn't be facing all these problems now along with early menopause. Do you think it's worth asking endo for an increase?

  • Maybe. Maybe not. Who can tell what might have been. Even if you'd been put on Levo after the birth ohf your first baby, if you hadn't been given enough, if you'd be treated by the TSH, as they usually do, you could still end up in the state you're innow.

    It's not surprising that all your hormones are affected, because they are all inter-dependant. If one is out of wack, they all will be to a certain extent.

    It's certainly worth asking for an increase. And, if he says no, buy your own.

  • I've got my first blood test  results which revealed high TSH and high antibodies but I didn't really have symptoms not like now, 

  • Same for me. TSH was about 11 and antibodies over 1000 when I was diagnosed. But the only symptom I really had at that time was weight gain.

    Everything went haywire when I started Levo. Calmed down a bit when I added in T3 and got much, much better when I went to T3 only.

    My FT3 is at the top of the range now, no sign of a TSH. But to be able to get it and keep it that way, I had to self-medicate. Most doctors want to keep reducing, rather than increasing! They just Don't understand how it all works.


  • Just slightly insufficient thyroid support can cause weight gain. Are you on other drugs? The Pill?

  • No just t4/t3 combo.

    I haven't had periods for 4 years (since aged 43)

    GP said peri menopause 

  • Whattt 4 years..... Well past peri menopause.

  • I did think that myself!! Must have gone through it without realizing lol

  • A few issues;

    1. As said above, with thyroid hormones just SLIGHTLY less than optimal, and you can gradually put on weight.

    2. T4 is only just within range. The range starting at 9 was introduced some years ago - for no known reason. It used to start at 12. Even that is very low.

    3. T3 is above average.

    4. This means T4/T3 ratio is too low. You need more thyroxin.

    5. In the glandular  thyroid (Armour, Nature Throid....) you have other thyroid hormones, amongst them T2, which might help weight loss. There is also some T4 in it.

    6. With peri-menopause (after 4 years, I would call it menopausal, not peri-?), your oestrogen is low. In some women, low oestrogen can cause weight gain, especially round you belly. Beta17-0estrodiol is the safest. Added progesterone is needed for a bleed from time to time. Speak with your GP.

    7. The most likely reason for oedema, is insufficient thyroid support. We need both T4 and T3, not just T3. They need to be in balance.

    8. Nutrition. For losing weight, you need to reduce insulin. This I done  by reducing carbohydrates in your diet. Elevated insulin can also cause oedema. Vitamin D (and average person needs about 5000 ius, sometimes more, a day) is essential. Magnesium and potassium are both diuretics.

    9. The reason why you put on weight initially, after having been put on Levo-thyroxin, is likely to be lowering of TSH (the thermostat for thyroid), your own production going down and Levo not being increased quickly enough. The total would then have been lower. The question is, did you really need it - and are you still in the same situation?

    Hope this is of help.

  • Thanks for taking time to respond.

    Are you talking about HRT? I was put on 3 different types of pills, felt awful sickness, acne and moody! I then tried patches and couldn't get on with any so ditched them all.

    I am taking my vit d and b12. 

    I don't feel any further forward from the day I started Levo. 

    I didn't have any symptoms when first diagnosed apart from feeling dizzy and lightheaded. I've got a print out of when first diagnosed which was high antibodies and high TSH. 

    I am starting to make changes to diet, I have so many food allergies which doesn't help matters.

    I've also looked at the blood tests they looked at for menopause which was LH and FSH which were high which means I'm done with babies!!  Well after 3 boys that's enough!!

    I am contemplating NDT endo poo poo'ed that!

  • With high antibodies, it is very likely you have a high histamine level. There are lists of histamine foods on the internet, but it is mainly fermented foods. So it could be you are not allergic, but that your reaction is because you add histamine foods to a body already high in histamine.

    I am talking of a gel called Estrogel. The pills and patches all have synthetic progestins in it, which is normally the cause of the problem, not the beta-17-oestrodiol.

  • are you given the gel by your GP?

    you might be right re histamine levels, I suffer oral allergy syndrome

  • Hi , I have the same problem I'm a man and I was super fit till I got thyroid cancer, after the op I'm on a high dose of thro, the weight has piled on I tried dieting exercise, etc nothing  works I get really down at times, can't get any sense out of the specialists, just don't know what to do next, you have my sympathies

  • Hi Jomo, I've just read through your two posts. There were quite a few comments/questions, but you didn't reply to hardly any of them. There was lots of advice, too. Did you take any of it? And, never once did you post your blood test results so that people could see what was going on.

    If you want people to help you, you have to give them all the information you possibly can. So, why not post a new question, giving your results - with the ranges - and let people know what you've tried so far, and what you haven't. I'm sure you'll get lots of concrete help that way. :)  

  • Thanks for listening!

    I'm sorry to hear you had thyroid cancer, did you have all of your thyroid out?

    It appears we have to work three four times as hard as anyone else for getting fitter.

    I can handle everything else it's just looking like a swelling blob that gets me down.

  • I would go to good Homeopath who could do Bio Resonance and find the root of yhe problem. Also, suggest liver detox and right natural supplements. I wasted soo much time and health hoong to GPs tobe told that all is fine. Give it a chance , to me it changed life for better.

  • Thanks for advice, I've never heard of bio resonance is that like blood tests/ eliminating food?

  • I would be interested if anybody could send link to scientific studies of Bio Resonance. I have not yet found any.

  • Sorry I ignored ur posts , but dont have much time to check with 2 little kids. Bio resonance is not much known as it's part of Functional Medicine and thats all shut down by Big Parma. I can say yhat to me with Autoimmune disorder made huge difference. I hv Hashimoto's and lately psoriases due to weakened immunity. Have very good therapist who comes to London from SA every 3 months. Bio resonace is some 'instrument' linked to computer , sorry can not explain better. All that I can say it identified my maladies that X rays , blood tests and screenings could not. I had high level of heavy metal esp LEAD in my system, candida and some patogens due to high heavy meatals as they feed on them, suspected Lyme, vaccines toxicity, gall blader low funcionality due to toxines in it, my spine problem which was presing on the nerves and I never known that. High heavy metals esp Lead can destroy thyroid function :( Nerves if pressed influence organ inflamation also.. so all connected. The aim is to clean the body from toxicity and improve immunity so body can fight of free radicals and heal itself.  Reads ur body and healt system like a book. Also, working on polyp in my gall blader which GP wants to prescribe surgery by hall bladder removal when polip reaches specific size, but my homeopath is confident we can remove polyp by her homeopatic treatment.  For me that's only way to healing after trying anything. Treatments are  tincture drops. Also, she tested my 4yrs boy hair sample and gave answers all his food sensitivities and issues he had, as cranio sacral issue, parasites .. With 1 bottle of her drops remedy amazing difference, his  ecema disappeared too.

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