This is my 1st post so maybe a little back story will help in February 2015 at age 44 I had a spinal lumbar fusion and 2 weeks later I suffered a Stemi ( fatal heart attack ) while an inpatient , thankfully as that saved my life , I was on beta blockers double dose of aspirin and statins I returned to work 3 mths later , I was very bloated from meds at the time and gained weight after a year I was taken off beta blockers , had some cervical injections for a bulged disc and life went on , in December 2016 I noticed that I had zero energy , no appetite and weight gain was different to that from after my surgeries I went to my gp who did blood tests rang me back same day said I had an under active thyroid and was prescribed 25mg of eltroxin with no information
Not one to lie under things I wanted to be the slim person I was before my surgery I joined a gym lost 33lbs had my bloods checked regularly and all the time my eltroxin was increased at this point to 100mg while I ate a balanced diet or so I believed.
In May this year I felt I was getting those tiredness bouts again and decided I would pay privately to see an endocrinologist as I felt no one was explaining anything to me or treating my symptoms specific to me
Bloods were done my gp phoned and said to take folate , which I didn’t , the past few weeks I have been feeling so fatigued while forcing myself to get to the gym as the thought of putting back on weight is not an option yet some days I can barely function from the tiredness and other days I have lots of energy anyway to cut a long story short my endocrinologist sent me a letter ( 6 mths later ) saying I have auto immune disease and has increased eltroxin to 125mg twice a week and 100mg 5 days plus folate. Which I’ve been taking , I mentioned my concern to endocrinologist about bloating she said I might need to see a gastroenterologist!!!!
Since then I’ve been reading about lots of ppl suffering bloating , horrendous constipation which is another thing yet not one doctor explained these were side effects I feel the longer this issue goes on the worse I am getting and very little information from doctors I don’t understand all the medical jargon of my free T4 my TPO my TSH it’s a mine field yet all I want are answers to why I’m feeling so lethargic no interest or energy levels like before I feel I was left too long to be told to up my meds , I am now going into hospital for an op on a trigger thumb I spoke with a nutritionist the other day who said auto immune disease is inflammatory hence the bloating , the infmmation in my thumb which now needs surgery I feel docs are dismissive and I’m lost as to who to turn too as I feel it’s spiralling out of control where I was so active and healthy I’m now constantly burned out and I’ll be damned if I’m going to let all my hard work at the gym go to waste , I’ve introduced gluten free to my diet and omitted broccoli I have to have bloods repeated in 5 wks but I’m afraid they will just keep fobbing me off like before
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GirlGone_Hypo
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Welcome to our forum Irish_irene. Most on this forum have sorry stories to tell but you will learn as you go along.
First of all 'swelling or weight gain are 'symptoms of hypothyoidism. Please give up exercising at present until you are on an optimum of thyroid hormones. I shall explain a little (and am not medically qualified).
When we have hypothyriodism it is due to our thyroid gland failing to produce sufficient thyroid hormones.
Thyroid hormones are essential for 'life' in all members of society although women are more likely to develop it and there can be more than a few reasons.
I shall give you a non-expert explanation.
The thyroid gland produces two essential, life-giving, hormones. As our body begins to fail by not producing sufficient our bodies struggle until we are diagnosed as hypothyroid (some people do not get the correct blood tests and remain undiagnosed for a long time).
The two hormones - (i.e. T4 and T3 are the hormones). T4 is an inactive hormone and has to convert to T3 which is the Active Hormone and is needed in our millions/if not billions of T3 receptor cells and our heart and brain contain the most.
The commonest prescription is levothyroxine and is increased (usually every six weeks after a blood test) until the TSH is 1 or lower.
As your dose is increased and you do gentle exercise - like walking - you should slowly begin to feel better with relief of symptoms.
It has probably taken years for you to become hypo - it is a slow progress, so it stands to reason we have to increase slowly.
The following are important details for you to get the best of of your blood tests.
1. Always get the very earliest, fasting blood test (you can drink water) and allow a gap of 24 hours from last dose of levothyroxine and the test and take afterwards.
2. Take your hormones when you get up on an empty stomach with one full glass of water and wait an hour before eating. Coffe can interfere with the uptake of hormones.
3. Some prefer a bedtime dose - in that case your stomach has to be empty, so if you've had a meal you should allow a gap between food and hormones.
If you decide on a bedtime dose, miss this if having a blood test next a.m. and take afterwards and night dose as usual (if you decide on a bedtime dose).
Ask GP to test B12, Vit D, iron, ferrtin and folate at your next test.
Always keep a record and always get a print-out of your results(with the ranges) for your own records and post if you have a query. Ranges are very important as labs differ and so can ranges.
If thyroid antibodies are in your blood this condition is called Autoimmune Thyroid Disease and it is these that attack the gland until you are hypothyroid but treatment for hypothyroidim or Hashimoto's (Autoimune Thyroid Disease) is the same, i.e. levothyroxine also known as T4.
On the link above, click on any of articles on the left-hand side for more information.
If you are having digestive problems, it is usually a sign of low acid and we need acid to dissolve food. You can supplement with Betaine with Pepsin Tablets at each meal which provides the acid.
Thank you so much for the reply and the links I already checked that site even though endocrinologist told me not to be checking google
No gp or endocrinologist has advised me to stop exercising I’ve been taking Levo thyroxine for coming up to 2 yrs
I’ve had my Vit D and B12 come back normal what worries me from reading your post is my TSH levels of 3.49 mIU/L
TPO antibodies were strongly positive at 268
Free T4 of 13.3 pmoI/L
Folate levels were 2.5mg / mL
Basically it’s all double Dutch to me I have been told by a nutritionist my T3 should be checked I feel I’m banging my head off a brick wall i Poland privately to see an endocrinologist yet I’m still not getting the answers I feel is necessary, I don’t have acid problems or reflux just bloating and severe constipation which endocrinologist recommendend seeing a gastroenterologist all of these consultations cost €200 and that’s without tests surely it’s up to someone who’s medically trained to explain all these symptoms rather than passing it off as stress,
I do take my meds an hour before eating and drinking
I always have blood tests done early and usually fast as I’m on statins since my heart attack
I feel I’ve gone downhill the last few months and not feeling the benefit with the increased dose of eltroxin in the last month.
Sorry, you're in such a muddle. But, the reason for that is that doctors are in a muddle themselves, and don't have much idea what they're doing.
Firstly, there are two things you need to do:
1) get hold of your blood test results and check exactly what is being tested and exactly what the results are.
2) get a private blood test to do the tests your doctors haven't done.
And, two things you need to get rid of:
1) your nutritionist. There is no need to stop eating broccoli! That's a myth. Unless you eat tons and tons every day, it's not going to be bad for you. I very much doubt your weight gain has anything to do with your diet/lack of exercise. It's a hypo symptom. And I doubt the weight-gain is caused by fat, it's far more likely to be water-retention, and dieting and exercising will have little effect on it. What you need to do to get rid of it is optimise your thyroid hormones. I hope you're not on a low/no-fat diet!
2) statins. Was your cholesterol high? That's a hypo symptom, too. Low T3 means that your body cannot process cholesterol properly so it builds up in the blood. But, your body needs cholesterol. It's made in the liver because you need it. And, it does not cause heart attacks or strokes. It is more likely that your under-lying hypo caused your heart attack, not the cholesterol. The hypo probably caused your back problems, too. I'm not suggesting you just stop taking them, but I am suggesting you do your own research. Taking statins and low cholesterol are far more likely to cause a heart attack than high cholesterol.
I know it seems like a 'mine-field' at the moment, but it really isn't. Keep asking questions here and you'll soon be an expert! Take care.
Hi firstly I’ve had chronic back problems for years resulting in me needing surgery as a last resort
I had my cholesterol checked it was 6.3 months before I had my heart attack cardiologist said it was cholesterol plague that caused it and put me on statins I have asked both him and endocrinologist about coming off them and they point blankly refused ...
I have had every blood test done but find docs just keep saying yeah that’s normal I posted my last results in my last post on here.
I’m not a on a low fat diet I went with a personal trainer who does all my nutrition and workout plans for the gym he works with a lot with women who have hypothyroidism and has never said that exercise is bad for me , even my orthopaedic surgeon two weeks ago said exercise is good for my back
What I don’t understand is what it means by getting to optimise my thyroid hormones ??? I have lost 33lbs maybe put a little back on but I wouldn’t have accomplished that without working out in the gym I’ve always been slim it’s in my genes they also told me it’s hereditary cholesterol and my coronary heart disease is also hereditary my brother passed away last year from same I was lucky
I have researched statins and I’m takings CoQ10 now , this is very difficult for me as I’m terrified of taking another heart attack as I was told I had 3 mins and had to have emergency surgery everything I’m doing I believe is to be a healthier version of me but I seem to be getting conflicting information, all I know is before I had back surgery I was working lead a busy life , returned to work for 10 mths then weight start piling on I found out I had hypothyroidism started in a gym lost weight felt great now I’m feeling soooo tired again and face another op albeit a small one for trigger thumb I just feel there no end to one thing after another I’m a very positive person but I can’t just sit around and let weight pile back on because I’m hypo I feel by exercising I’m getting fitter and keeping the weight off and I eat very healthy my mum and sister both have thyroid issues my sister was hyper for years her’s has rectified my mum was hyper now hypo and she’s onnstatinr also much lower dose I’m on 40mg I’m googling like a mad woman but everyone says differently to the doctors it’s very confusing sorry if I sound desperate but thats how I feel with all the conflicting issues around statins , hypothyroidism, exercise etc
Oh, I do understand your desperation. Been there, done that. Hard to know who to believe. Lots of conflicting opinions and advice.
Firstly, no-one is saying that exercise is 'bad for you'. What we're saying - or should be saying - is: be careful what exercises you do. You need good levels of T3 to support exercise. Have you ever had yours tested? It could be that it is low. I doubt your trainer knows much about T3 - doctors certainly know nothing!
Optimising your hormones means getting them to a level that makes you well. If you are still ill, your hormones are not optimal. We all have different needs, so ranges are just a rough guide. It's how you feel that counts.
As for cholesterol, doctors only know what Big Pharma reps tell them. And BP reps want to sell statins! Actually, you'd be amazed how ignorant the average doctor is. It's often only when you become hypo that you learn that! I don't doubt that your cholesterol was high months before your heart attack. But, that doesn't prove anything. You've probably been hypo a lot longer than you think. It creeps up on you slowly, because the adrenals take up the slack. And, as doctors don't test thyroid unless they absolutely have to, a lot of people are hypo for a long, long time before they get diagnosed - me, it was getting on for 50 years!
Two books I would recommend to you:
Dr Malcolm Kendrick - 'The Great Cholesterol Con'
Dr Broda Barnes - 'Solved: The Riddle of Heart Attacks'
Oh, and do you know that you need cholesterol to make hormones? And, as you are already hormonally challenged, it would be a shame to add to it by lowering your cholesterol too far - 6.3 really isn't that high, it's just that they keep lowering the goal posts!
That makes a lot of sense I most likely was optimising my hormone level as I’ve not felt too bad the past 20! Months hence why I’ve been working out 5 days a week I had little lapses and meds have changed 5 times always increasing dosage , it’s only the last month with the chronic fatigue I started really to google and that’s when I realised why my nails are brittle among other things and realised this is more serious than I ever imagined explains mood swings, insomnia etc !
Yes when I had my cardiac rehabilitation the nurse said my cholesterol wasn’t that high to cause such a fatal heart attack , I was having epidurals in my back every 8 wks for 2 yrs after yrs of seeing specialists and every pain med possible to keep me going so I could work so I’m kinda looking back and thinking all that could have been masking the hypo we’ll never know ... all I can do now is look forward and hopefully get back to feeling like I have been and I’m going to see if they’ve tested my T3 in the past and if not I will request at next visit they do
Thanks for the book recommendations I’m slowly finding my way around the forum too bear with me and thank you 😊
There is no mention of my T3 levels in endocrinologist letter just the results I posted here earlier , I can get results from my GP but looking at them makes no sense to me I’m not trained medically to know what is normal with all these blood tests
I don’t even know what NDT means I must sound really thick but I didn’t consider this condition to be so life changing , I basically was diagnosed given eltroxin and joined a gym I went hell for leather to get my physical self back probably on overdrive but the last month I just feel like a hit a brick wall and started googling and questioning everything now I know why my nails are like paper for instance I never thought about this affecting me as I thought I was doing really well by working out and staying what I believe fit , thank you all that have answered my questions it sounds like it’s such a battle to get answers from the medical profession and I’m unsure why I’m paying to see specialist and not being told any of what people are discussing on here.
No I’m not a red head but it’s in my genes and I have two sons with red hair ... jeez my mum is the youngest of 13 and I’m the youngest of 5 ! All I know is most of my aunts, uncles , grandparents died of cancer except one of my grandads massive heart attack
My personal trainer has never mentioned exercise depleting T3 and nutritionist I spoke last week did say exercising was depleting my T3 but if I stop I will put the weight back on plus it’s like therapy for me after yrs of chronic back pain I started to feel like I had a life
Your nutritionist sounds wonderful! I don't think. What a stupid thing to tell you. This is the truth:
Exercising not only has an effect on your T3, it has an effect on your ability to make T3.
Exercising uses up calories. You might say that that is the point of it. But, for one thing, you shouldn't be counting calories to lose weight. It just doesn't work like that, I don't care what they say. You need calories to live. You need calories for all your actions - even thinking. But you especially need calories to convert T4 to T3. So, if you're only consuming a limited amount of calories, because you're trying to lose weight, and you then go and use them all up exercising, what is left for everything else? Low calories in the system means that the T4 starts converting to rT3, which is inert, instead of the active T3. You then have less T3 to support your exercising. So, that has a knock on effect on the rest of your life and you start feeling worse and worse and worse. It's low T3 that makes you hypo, remember, not a high TSH. And low T3 that causes symptoms.
So, until you have good levels of FT3 - somewhere in the top third of the range - you should restrict yourself to gentle exercise, like walking and swimming. You stand far more chance of regaining that weight with a low T3 than you do from reducing your exercising.
Trainers and nutritionists only know what they are taught. And, they are taught in a corrupt, money-obsessed system that has it's own agenda. I very much doubt if either of them has done any research into thyroid since they finished their training - and precious little into it whilst they were training!
Hi me again I had my 8 wks blood results back so is it ok to post previous and now as I got my file from doctor
I have felt lousy the past few weeks after surgery and just general fatigue but this week I decided enough was enough my husband is with a good trainer who I spoke to at length he was shocked at my resting heart rate , said I should never have been on a calorific deficit meal plan
He’s changed all my exercises and will review me week by week to see how I’m getting on and will work closely with me as what I was doing in the gym was more harmful
Last meds : May 2018
TSH 3.49 IU/L 0.35-4.94
Folate 2.5 ng/ml 3.1. - 20.0
T4 free 13.3 pmol/l 9-19
B12 291 Pg /ml 189- 883
Ferritin 90 ng / ml 5 - 204
Since these were done I was put on folic acid and my eltoxin was raised from 100mg 5 times a week and 125mg twice a week
November results
TSH 0.55 IU/L 0.35 - 4.94
Folate 19.2 ng/ml 3.1 - 20.0
T4 Free 14.5 Pmol/l 9-19
B12 316 pg / ml 189- 883
Ferritin 76 Ng/ml 5 -204
TPo antibodies not checked this time but in May they were 268 , according to endocrinologist but I can’t see them on either test results also t3 was not tested and I was told the lab wouldn’t do so if my TSH levels were normal
Any advice on the above would be appreciate as there seems to be a significant change in some numbers but what they mean is gobidly gook to me
I know you said before TSH should be at 1 so that’s definitely changed , my ferritin is lower and my Free T 4 is higher but I’m still experiencing days when I literally cannot get out of bed to eat the fatigue is so bad , the forgetfulness is getting worse I’ve changed to gluten free because of hashimotos I’m eating substantial plenty of veg and Broccoli
Sorry? What is the connection between Hashi's and veg/broccoli?
Well, your TSH is good now, but that's irrelevant. Your FT4 is only just mid-range. Most hypos need it higher that that. What did your doctor raise your levo to? As your FT4 is too low, the odds are that your FT3 is, too. They are so ignorant not to test it! It's the most vital number, and without it, you cannot know how well you convert. But, I would go really slowly with the exercise, if I were you. Too much, or too strenuous, exercise will make your conversion worse, and your FT3 will end up very low. And, it's not going to make you lose weight, anyway. Could make you put more on!
Your folate is good, now, but your B12 and ferritin are too low. The B12 should be at least over 550, and the ferritin about mid-range.
If your antibodies were over-range last time, you have Hashi's. No need to retest because it doesn't go away.
Hi thanks , the only reason I mentioned broccoli is because last time I posted I was told not to stop eating it , I wasn’t informed by my doctor of these results being too low I just collected them no one has contacted me I noticed my ferritin obviously was lower this time but wasn’t sure what ranges they should be should I just by b12 supplements and how can I increase ferritin ? At the moment I’m not financially in a position to go private again for more bloods and each doctors visit is costing me €55 I’m so annoyed that they didn’t even call me to explain this and were totally dismissive of T3 being tested because the lab won’t do it If TSH is normal is what I was told I’m going to screenshot this and call the GP Monday and ask she calls me back to explain , my Levo changed 8 wks ago From 100mg everyday to 5 times a week and 125mg twice a week
What is the answer here to losing weight then ? as a friend of mine has hypothyroidism and she’s lost a huge amount of weight from exercising and I mean huge amount
Thanks for taking the time to answer my questions , would the low ferritin and b12 be the reason I’m tired so ?
Yes, there are people that think broccoli is bad for hypos. But, you would have to eat huge amounts of it. I doubt anyone could eat that much.
Your doctor wouldn't think there was a problem with your ferritin, because it's well in-range. The trouble is, the range is much too wide. And, hypos need more iron than euthyroid people. Doctors understand very little about nutrition. They don't do it in med school.
You could increase ferritin by eating liver once a week.
What sort of B12 supplements do you buy? And do you take a B complex as well?
But, your doctor is probably right about the lab not testing FT3. The system is totally wrong, of course. The people that work in the lab have no understanding of thyroid. They shouldn't be allowed to decide what tests they will do, they should do what the doctor orders. But, that's the way it is, these days.
The answer to losing weight is to optimise your T3, but as you don't even know what your T3 is, that's not easy, I know. Please don't compare yourself to other people. You don't know what her levels are like. Thyroid isn't the simple thing that doctors like to think. It's a complicated condition, and everybody is different.
Low ferritin would certainly make you tired, yes. Just as low T3 would. Combine the two and…
Hi couldn’t read the end of your message I’m not taking any vitamin b complex or B12 supplements at the moment .... and I would gag 🤮if I had to eat liver ! Sorry
It’s very hard to see others with the condition lose weight irrevelant of their levels I was doing so well at the gym and losing weight and gaining muscle I’m taking it a lot easier now only training 3 times a week
I’m going to see the cost of having a t3 blood test as I need to understand what’s best for my body and prevent filurtyrr weight gain
But you don't know if she has the same condition. Just saying 'I'm hypo' can cover a lot of complications. No two cases are ever exactly the same. Everyone has there own set of symptoms, and not everyone has weight-gain/difficulty losing weight. Which is why you should never compare yourself to others.
Sorry, I thought you said you were buying B12 supplements. Well, your would need to buy them to raise your B12 - 1000 mcg sublingual methylcobalamin. And a B complex. You'll find good quality supplements on Amazon.
If you can't eat liver, then you'd have to take iron tablets to raise your ferritin.
If you have your FT3 tested, you really need to test the FT4 at the same time, to see how well you're converting.
I’m with ya , thanks so much I’ll check those vitamins out today and will look into having t3 and t4 tests re done thanks for all your advice you’ve been a font of knowledge for me and I really appreciate you taking the time to answer
Sorry yes I know I’m entitled to blood tests the issue is I don’t understand them and also I’ve only recently read about statins not being good for you but you put your trust in a cardiologist who’s saved your life by taking medication they say wil prevent another heart attack ,
Thank you you don’t know what this means to me , I thought I was going off my rocker the fatigue has me wiped out and I’ve been pushing myself to do daily tasks
Try telling that to 3 teens who look at you when you ask them to do something to help and they see you sitting down it comes across as being lazy to others sadly
Gosh if you’ve struggled so much and you have such an abundant knowledge and history of it I fear for the rest of us , we don’t have an NHS here we pay for everything I will get this op out of the way this week , wait until 3 more weeks to have tests re done and get all my blood results from GP and if it’s ok will share the up to date ones with you if you don’t mind explaining thank you for your time and keep fighting the fight x
I think it's important to accept that in practical terms, its never going to be the focus of our GP to educate us on health matters other than in the most basic of terms; and that in any case, we have to take responsibility for our own health, and learning about it. Increasingly there does seem to be a tendency for them to provide a diagnosis and ask if you'd like them to print off some information about it, but often there just isn't the time for them to discuss other than key points. (There is a GP at my practice who loves to talk with patients and it's a delight, but the downside is that at my last appointment with him, by mid-morning he was running 2 hrs behind .....).
Regarding broccoli, there is no need to omit it from your diet, and on the contrary, it is an important food that has great health benefits, including some of particular relevance to you such as inflammation: livescience.com/45408-brocc... But in any case, had it been important to omit goitrogens as they are known, you'd have to omit them all and not just broccoli. Fortunately, cooking lowers the goitrogenic content of foods, so steaming crucifers until fully cooked for instance, reduces goitrogens by about two thirds, and retains more of the nutrients than boiling. So avoid consuming daily raw green smoothies for sure, (I put broccoli in mine every once in a while, but not regularly) but cooked is fine. If you're a fan, fermenting apparently increases the goitrogen content of cabbage, but it simultaneously decreases the level of nitriles, but because nitriles are more harmful than goitrogens, the overall effect of fermentation is probably positive. Finally, the two goitrogens to definitely avoid are soy, and rapeseed oil.
Hi there I paid privately to see an endocrinologist so I expected her as a professional in her field to educate me as I felt it wasn’t the GP’s expertise I was also told by said Doctor not to google and listen to them , I like broccoli but in my dinner not a smoothie I just watch what I eat making sure I get plenty of protein and carbs after my workout for my muscles everyone here has been a great help I have a lot to process thank you
Won’t repeat the great advice already given. Just to say... Your folate does appear to be very low and I’d lay money on your B12 being low in range rather than normal. See if you can get hold of the actual result and lab ranges - and we’ll let you know if it looks like you should either be tested further or whether to start supplementing. Low folate and/or B12 can be very debilitating in themselves, let alone with the additional stuff you’ve got going on. Big hug x
Welcome to the forum! Loads of info and it will take time to get your hear around it all so I would take your time and improve things gradually so you can also experience the changes that are hopefully happening. Thecother thing to take on board is things move slowly in the Thyroid world andxwe cant speed it up so a degree of patience is needed. Thyroid Uk run this forum and so good idea to look at their site and read the information. I kept going over it until I understood more about what I needed to do. At first I was nervous about posting butvthen I started looking at the posts and thinking what the poster should be doing to make things right. Then I looked at the actual suggestions and in time I was finding I knew some of the answers before I'd actually read them! That gave my confidence a huge boost!
If you worry about anything , don't! Post your question and wait for the reply!
Thank you for the reply yes I’m understanding about time it’s 2 yrs since I was diagnosed with Hypothyroidism and 3 mths since I found out I had hashimotos even though tests were performed in May neither my Doc or endo informed me until sept I have had my meds changed 5 times so far , and I’ve just posted my results , I honestly am overwhelmed by all the side effects and literature I’m reading its a minefield I have looked at the links grey goose sent me from the site but unless docs will listen I fear I’m getting nowhere we pay for every doc visit €55 prescriptions up to €144 a month and privately €200 for endo who said to see a gastroenterologist for bloating when in fact it’s a side effect , what hope have I got with the medical profession , being told tiredness is due to menopause and there’s no such thing as brain fog ! When I am experiencing it daily , I’m so glad you’ve found the confidence and your feet to post and learn it’s all a new process for me and apart from my husband my teens just don’t get it , it’s a battle to get them to help as they don’t see me as sick which I’m constantly feeling I have to justify asking for help from them but that’s my issue I just want my life back which I feel I got some momentum this week returning to gym only 3 days and light exercise but it’s a start from a few months ago
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