Please can you look at these and advise ? Been on 100mcg of Levo since November. I was feeling ok at the start, but last few weeks..
Very achy, very very tired. More so than I have been before on medication and voice gone croaky again. I thought the blood tests were going to come back with a high TSH but it’s the opposite?!
Why am I sooo tired?! 😟
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LadyWard
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Ferritin is low. Ask GP for full iron panel test for anaemia. Iron is complex and needs full testing
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
Hi Slow Dragon? See my reply to Susie. I have started taking Magnesium citrate at night, which does seem to be helping with not sleeping properly and still being constipated x
My free one is 16.4 (range looks like 12-22) the last time I had is checked it was 18.8. I don’t know if that’s good or bad that it’s come down?
I stopped the B complex about 5 weeks ago as ran out and also the Vit D about 2 weeks ago. I didn’t think at the time they were making any difference but I guess they were!
I just don’t understand why I am so tired. My eyes are always stingy like they just want to close. I never felt this bad before? Do you think my TSH is abit low for me? Could that be causing the tiredness? Oh and despite dieting, walking I have put on even more weight!
Oh I was gonna ask you how your eyes have been feeling lately. When my tsh starts to go under one my eyes feel dry gritty and they burn all the time. That’s always my sign that my tsh is going the hyper direction.
Ferritin is the storage form of iron.low ferritin doesn’t necessarily mean you also have low iron
Never take iron supplements unless had full iron panel via GP that shows low iron
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
Well, you have out of control TPO antibodies, ferritin is below optimal, and D, B12, and folate not optimal. You will need to work on these numbers by incorporating foods and supplements with these vitamins.
Based on your antibodies, I'm guessing you have either Hashimotos or Graves? I'd like to know more of your history. Your symptoms certainly do sound hypo but looking at your labs, it seems you have some more complicated issues than just needing med adjustment.
My only symptom at the start a year ago was my voice kept going very very croaky. After tests and cameras they put it down to my thyroid and that it was damaging my vocal cords. He said once medicated properly it would improve. It started getting better and then all of a sudden over the last 4 weeks it’s gone croaky again and I’m so bloody tired? I literally feel like I am falling asleep all the time, get quite dizzy, constipated, can’t loose weight despite being strict and my neck is really achy, feels like my head is too Heavy for my neck?!
It’s just odd that I now feel much worse than I have ever felt? I wondered if my TSH is too low for me now?
Seeing GP on Thursday but I doubt she will do anything x
It sounds like the vitamin deficiencies and high antibodies are causing some issues, preventing your hormone levels from being balanced and your meds are not working at full potential for you. Cordyceps sinesis mushroom powder works wonders for lowering antibodies and helping with an overall balance with your adrenals and thyroid, etc. You can read a study about this mushroom here drhedberg.com/cordyceps-has...
I would highly recommend to anyone to take steps to lower antibodies and inflammation.
As others state here, you will want to get the vitamin levels in check. And I would recommend an anti inflammatory diet to anyone having issues with thyroid, adrenal, and other hormone balance issues, regardless of the specifics of their situation.
Taking the right steps will help you heal long term. You might also want to discuss a t3/t4 combo with your doctor. That is an option if you don't feel the levo alone is working for you.
Please keep us updated on your progress. I hope you can start feeling better very soon.
Cordyceps sinesis mushroom powder works wonders for lowering antibodies and helping with an overall balance with your adrenals and thyroid, etc.
Although this is meant to be an adaptogen and therefore balancing, it's important to know that it can lower cortisol (as I know to my cost) so, of course, testing that is important before taking any adaptogens.
It's interesting to know it did that to you. I suppose everything works a bit differently for everyone. My cortisol was low and was balanced by the cordyceps, or at least has raised and not lowered since utilizing the cordyceps. And antibodies slowly coming down now. One thing I did learn is cordyceps sinensis is the only strain known to lower antibodies, militaris not being effective for it. Not sure if it could have the lowering effects of cortisol, certainly possible.
You can ask for full iron panel test for anaemia....but ferritin not really low enough (yet) to justify
Ft4 16.4 (12-22) is on low side, only 44% through range, so you have room for dose increase.
Perhaps to 112.5mcg initially (100mcg and 125mcg on alternate days) Retest in 6-8 weeks
Ft3 4.8(3.1-6.8) is 48% through range
So you are a good converter.....but not on high enough dose of levothyroxine
Obviously GP likely to only look at low TSH and more likely will want to reduce dose ....in fact you likely need dose increase in levothyroxine
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
i had similar results to you and similar symptoms- my voice was hoarse, weight gain, super tired etc. i worked on my issues for about 4-5 years. some things that helped- going gluten free, taking igennus super b complex and other supplements based on my specific issues all helped. i started taking ndt ( but not sure you need that as it contains t3 and your free t3 doesn’t seem abnormal or indicate poor conversion)
i found meditation, running, reducing stress and eating well and fasting/calorie controlled diet eventually helped me to lose 4 stone: but as has been said above when your antibodies are so high your body is telling you something is wrong, dieting isn’t going to help.
seaside susie & silver avocado always have great advice,
the most important thing, i feel, is to listen to your body, treat it with respect and read as much as possible. as i mention the admin here have great info, maybe read their replies to others too it can be really useful
My only symptom at the start a year ago was my voice kept going very very croaky. After tests and cameras they put it down to my thyroid and that it was damaging my vocal cords. He said once medicated properly it would improve. It started getting better and then all of a sudden over the last 4 weeks it’s gone croaky again and I’m so bloody tired? I literally feel like I am falling asleep all the time, get quite dizzy, constipated, can’t loose weight despite being strict and my neck is really achy, feels like my head is too Heavy for my neck?!
It’s just odd that I now feel much worse than I have ever felt? I wondered if my TSH is too low for me now?
Seeing GP on Thursday but I doubt she will do anything x
Also don’t worry about the TSH result so much. You can still be hypothyroid and have low TSH. Maybe you would feel better if free T4 and free T3 were at the higher end of the reference ranges. And as others have said if your iron and Vit D levels were more optimal you would maybe feel better.
I think you might need a increase of Levothyroxine because my Dad who is classed as elderly is on 100mcg a day and I agree about what was said about your vitamin levels.
TSH is not a thyroid hormone; therefore it does not directly effect your energy levels. TSH is produced by the pituitary as a messenger to tell the thyroid gland to produce more thyroid hormones. Of the several thyroid hormones, it is T3 that has the largest effect on how tired you might feel. So don't be an endocrinologist! Stop worrying about TSH and concentrate on optimizing your free thyroid hormones. They need to be at least in the upper half of the range for most people. Some need them to be in the top quarter of the range. There is a calculator that allows you to type in your result and the the bottom and top of the range for both Free T4 and Free T3. When you click the button labeled "Oblicz" the percentage through range will be displayed for both.
ThyroidUK has a list of endocrinologists who are more open to the concept. In the US, the NGOs are starting to come around to the idea, so more and more doctors will give it a try.
Hi, my ferritin level was also low, so I followed advice & took an iron test from medichecks before going to GP for supplements. I’m following advice from humanbean & retesting in 2 months. Would recommend you do the same.
LadyWard, you've mentioned a few times that you've felt worse in the past few weeks, and also that you're strictly dieting. Restricting calories can be very bad while we're hypo. Your body needs those calories to make use of thyroid hormone. It's much better to eat a generally healthy diet, plenty of fat and lower in carbs, and no restriction. Concentrate on optimising your health, and if you're lucky the weight will fall off easily once you get things right.
Its very difficult to read your results in these little pictures. It's much better to type them out so that everyone can read them easily. Your thyroid results, as far as I can make out:
TSH: 0.78 (0.25-4.5)
FreeT4: 16.4 ( 12-22)
FreeT3: 5 (3.3-6.6)
Overall, this is an undermedicated set of results. TSH stands for thyroid stimulating hormone. Its a chemical messenger made by the pituitary to signal the body needs more hormone. Once taking any thyroid replacement, this tends to get very low. Most people end up needing it under range to feel well. Yours has dipped quite low considering your hormone levels are also quite low, but it doesn't matter too much as TSH isn't really important to look at.
Both freeT4 and freeT3 results are a measure of how much hormone you've got in your blood. The Levothyroxine you're taking contains only T4, and your body has to convert it into T3, the active hormone, before it can be used.
Because you're only taking T4, in the first instance with Levo dosing we want to see the freeT4 get nice and high. Most people on Levo will need it fairly high in the range, some even need it to go over in order to make enough T3. Yours is current under halfway through the range, so it's far too low.
Because freeT3 is the active hormone needed by every organ and cell in our body to work properly, this number tends to most closely reflect how we're feeling and symptoms. Most people will need this in the top third of the range to feel well. Yours is pretty much right in the centre. You're quite lucky because this shows you are converting T4 into T3 very well, most people will have freeT3 lagging a bit behind freeT4. This level is still a little on the low side, but hopefully you are close to getting it high enough.
I would say you need an increase of 25mcg of Levo, stick on they for 6 weeks and then get a new set of tests and adjust again. You may need a few increases in a row to get you where you need to be.
Others have mentioned a number of different measures in the comments. I would say the number one thing you can do to reduce antibodies is to go gluten free, as it helps about 80% of Hashis sufferers, after that you can try dairy free, which helps a smaller number. After that there are more varied things to try. Vitsmins see very important so work on those from the start, too.
Looking into the adrenal glands using the 24hr saliva cortisol test is another rabbit hole to go down! Personally I would suggest adjusting your thyroid dose a couple of times and seeing how much improvement you get before working on other things.
With everything, eating a good nutrition rich diet of homemade food and not restricting, exercising gently but not strenuously, getting plenty of rest and learning to relax, reducing stress are all things that help whatever is going on and are particularly good for the adrenals.
I don’t understand why everyone here recommend ft4 and f3 being in upper range. I think this is dangerous proposition as not everyone is the same and for some people bottom range is their normal. That is why ranges are so wide, but everyone here is advised to keep their tsh under 1 and FT3 and 4 high and that can make things worse for some people. That is also problem with the doctors who assume that you are ok as long as you are in the “range”. Everyone’s “normal” is different so we should encourage people here to watch out for their symptoms not he numbers as they differ between us.
Symptoms are of course much more important than blood test and ranges. Blood tests are always a very partial snapshot of where you are at that moment.
Its always very important to say that most people feel best with freeT3 and freeT4 at the higher end of the range. It's trial and error for each person to find out how they feel well, and it makes sense to try what works for the biggest group of people first - particularly as many people will have been kept undermedicated by doctors. If people get there and still feel unwell then it's time to start trying other things. For many on the forum those other things will include pushing their levels well over the reference range. I don't think you'll find anyone here discounting that a few very unusual people will feel well with lower levels, but I think it's quite unsafe to assume that will be the case without putting it to the test.
I'm not sure you're correct that the reason the ranges go all the way to the bottom is because people exist who feel good with their levels right at the bottom. These ranges are not really derived with the best interests of patients at heart!
If you're interested in finding out why we tend to recommend high in range free hormones a great place to start is to look into the work of Diogenes and his research team. A lot of the advice I give on the forum is directly taken from their journal articles: healthunlocked.com/user/dio...
The point here is that many people who have thyroid problems are not on this forum, and again we are all different and there is no reason to suspect that the ranges are some part of conspiracy theory. My FT3 was always near bottom of the range when I was healthy and had my always functioning thyroid, before doctors who screwed me up. TSH is your brain’s signal that you need more or less. So unless your brain is not working properly that is also something that should be taken into consideration instead of advising people to push suppressed levels because it works well for some people. 95% people who are tested are within those ranges and can vary from person to person, so there is no reason to believe that being in upper ranges works for everyone. A
Lot of people who don’t know much about it can follow this and feel worse and I think we should be careful about it.
As Silveravocado has said if you read Diogenes papers you will see why the recommendation is to have levels in the upper part of the range in order to restore health if you have thyroid disease and are taking replacement thyroid hormones.
I understand that for some people being in upper ranges works well but that’s not the case with everyone so we shouldn’t tell people they are low because one paper recommends it for certain people. We are all different and need different treatment that’s all.
Diogenes has a lifetime body of work trying to understand more deeply how thyroid illness works, and several of his team have large contributions, too. I don't intend to suggest that they are the only ones, but to give you a starting point to learn more as you'd mentioned that you don't understand.
There will be some people who won't feel well just because their freeT4 is high in range. That's only the first step on the journey. Then a small number of people who won't feel well once their freeT3 is high in range. I am one of those people myself. But I've had a 4-year journey of adjusting my dose, I don't expect what's worked for me to work for anyone else because I'm one of the unusual ones. I suggest to others that they start with the logical first thing to try.
I'm a bit surprised to hear that you consistently felt well with a bottom of the range freeT3 measure, but of course everyone is different, and some of us are very unusual. I don't think that is a reason to suggest that our own unusual situation will work for others.
I am also a little surprised that you have multiple freeT3 measures from a time when you had no symptoms of thyroid illness, as many people struggle to ever get freeT3 tested even when they're very sick. I'm afraid it makes me a tiny bit suspicious that you might be exaggerating.
First of all I live in America and here all my doctors including GP tested my FT3 even during regular annual check ups, so I find really weird that you are assuming that someone would lie about something this serious just because you find unusual that someone can be normal in lower range. Second, it’s not unusual that people have low FT3, since ranges are what they are because most tested healthy people are in between so I still cannot comprehend why is that is so hard to accept. If that is not the case then range for FT3 would be let’s say only from 3-4 instead of 2.30-4.40( in the USA lab), and that is from what I understand because most healthy tested people are somewhere within that range. Some healthy people’s “ normal” is perhaps even higher or lower, but for 95% is somewhere in this range. People who are on this forum are the ones who are not clear cases and it’s harder to find their right dose, but from what I read so far most people are doing well with conventional treatments and they are not here on this forum. So cases here are more unusual or have terrible doctors and therefore require more comprehensive review and that is why they are here to share different views, which is what I am trying to do. As all of you, I understand the pain that this condition can present but it’s also important to note that one size doesn’t fit all. That is all.
You’ve already received great advice. I agree with others that you are under-medicated. You said you felt well initially when you started on 100mcg Levo and then went downhill - this is your thyroid telling you it wants more.
Your antibodies are high indicating that you have Hashis? Do you have that diagnosis? Hashis complicates things as you can swing from hypo to hyper. I don’t think that you are hyper right now but undermedicated. Also, now that you have autoimmunity indicated, have you ever been tested for other AI conditions? (ANA test).
Vitamin levels are far from optimal - that’s also having an impact. Getting things optimal is key to it all working.
Do you have a full iron panel? Ferritin can fluctuate and isn’t as important as serum iron and %Tsat.
HRT effects thyroid hormone levels. I find that I needed more thyroid hormones once on HRT. I’m on twice daily progesterone and two forms of estrogen (estradiol/estriol) taken in a custom compounded transdermal cream form. I don’t need to supplement testosterone - I make enough and when I supplemented, it only made me angry all the time. Important to test for this before supplementing.
Because you’ve become a little over medicated. I would alternate the dose with 88 mcg every third day. 100/100/88. Then you will get your energy back and the achiness will dissipate. Happens to me everytime I need to lower my dose. That’s why they say being optimal with tsh is between 1.00-2.50. You fell under that range. Too much thyroid meds will put you in a hyperthyroid state which causes muscle breakdown and that’s sooo painful. Your free t3 is starting to head in the hyper side. That pretty much proves it. I lived 15 years with hyperthyroidism before my ablation and now 10 years with hypothyroidism. Achy body is always my sign to lower my meds. And especially the fatigue which both hyper and hypo cause but in different ways.
Why would you say that? The brain is the best indicator of what she needs and it’s says that she has enough or more. For some people hypo and hyper symptoms are the same.
I’m so glad that you understand that some people can’t be in the upper ranges for ft4 and ft3. I know if my ft3 ever went above 3.5 I would be hospitalized for severe hyperthyroidism from cardiac symptoms. It is very dangerous to run a higher level on the frees. I also agree that the tsh is very very sensitive and has always been sooo accurate as to how I’m feeling. A lot of people start thinking it’s low iron causing the fatigue and symptoms and they start taking it and get relief from the symptoms but it’s actually that there blocking some of their absorption of the thyroid replacement and get relief.
You can’t just go by a number - its the lab ranges that are important to consider when looking at results. So, your 3.5 FT3 result could be very different than the OPs 3.5 FT3 result because of the ranges.
For example, with the lab I use, the range for FT3 is 2.4-4.2 pg/ml. So in my case, a 3.5 FT3 result would be just over mid-range (3.3) which would be good.
HOWEVER, the OPs lab range for FT3 is 3.3-6.5. So, a 3.5 result is just barely over the low range which is NOT good.
Now, let’s look at her FT4. The lab range is 12-22. Her result is 16.4 which is below mid-range (17). Again, not good.
She is undermedicated and her thyroid lab results support that.
Whichever ranges you use it’s not right to tell people that for example their ft4 or FT3 is low because it’s in Low range. What that even means? Everyone’s levels are different and for some people low range is their “normal” range- that is why we have ranges and most people are somewhere in between. Furthermore, some people feel normal even if out of range. For you being in mid/up range of either of these two might be right but for me it’s too much and can cause health problems even if still in “range”. It’s ok to tell people where you feel the best but I think its. dangerous to tell them that they are low because or lower numbers especially if their tsh/brain signals that it’s enough. Hormones are very powerful as we all know here and too low and too much are not good for us.
I think you are confused about lab ranges and what they indicate.
Labs use different ranges based upon the calibration of their testing equipment. So one person’s result of 3.5 isn’t equivalent to another’s when the lab test was done at a different lab with different ranges. If ranges didn’t matter then a test result would just be a number with no range included. But that’s not the way it is. Ranges matter.
I will agree that I can’t accurately say at what result the OP will be optimal. That is up for her to determine based upon how she feels. She posted results and asked for opinions. The experienced folks on this site have taken a look at her labs and have each responded with their opinion. It is up to her to take in the information and determine the path to walk.
Yes, hormones are powerful and affected by many things: vitamin levels (key ones for her are low), HRT (the balance or imbalance thereof), AI (she has Hashimotos which complicates things), diet, stress, physical activity, etc. If thyroid health were easy to manage, a forum like this wouldn’t need to exist.
Yes, I understand how ranges work-it’s not that hard to understand. Her FT3is for example in middle range (looking not mine but her ranges done in her lab) and people tell her she is low even though her tsh is supressed which could suggest that her brain says she has enough. That’s my point. FT3 in middle or low ranges could be ok for some people (again looking at THEiR lab results and lab ranges).
Yes, I know. But on this forum for what I have seen so far everyone is encouraged to push their FT3 and ft4 levels to at lest up/mid levels regardless of their tsh(brain response)which I think is wrong given that not one size fits all and we are all different. Several people on this thread told this woman that her levels are low and she should up her medicine because FT3 in the middle range is somehow low, which cannot be true for everyone. Tricky part is as we all know that hypo and hyper symptoms can be the same for some people so it’s hard to determine but I think we should not disregard brain signal unless we know for sure it’s not working properly( for most people it does)To me it’s just common sense, I don’t need a research to show me that.
Many people on this forum ask for help and advice from experienced members as they are still feeling unwell despite their TSH (a pituitary hormone) being in the reference range and being on a supposedly adequate amount of T4. In disease states the TSH (a pituitary hormone) and their thyroid hormones feedback loop becomes dis regulated and science has shown that in order to restore health and reduce symptoms a higher dose of thyroid hormone is needed and even the addition of T3 containing medication. This is why experienced members are recommending that they get freeT3 and free T4 in the upper end of the reference ranges and disregard the TSH result which is much less important indicator when on treatment than actual thyroid hormones - so in this case disregarding ‘brain signals’ is quite good advice. In fact over reliance on the TSH test by practitioners is the main reason so many people with thyroid disease remain unwell and are under medicated and end up on forums like this! Thyroid hormone reference ranges are set using tests from healthy individuals - in thyroid disease states these ranges especially for TSH are less applicable. There is an excellent article by Dr. Toft which explains all this. It is an ongoing conundrum for thyroid sufferers on whether symptoms are due to under or over medication or something else and it can be very hard and frustrating and of course we are all individuals and need to find what’s right for us. Usually overt over medication can be spotted due to increased heart rate, feeling anxious and jittery and feeling warmer than usual and a reduction in dosage is needed. Generally however ongoing hypo symptoms are due to undermedication usually because of over reliance on the TSH test and the recommendation by members for those still suffering hypo symptoms despite ‘normal TSH’ to get levels up higher in the reference range is a good call and based on sound science and evidence. 👍
I agree, I am not saying that we should solely rely on tsh, but to look at a whole picture and that is that everyone’s “normal” FT3 and FT4 are different and can vary in range. If someone’s FT3 is at lower or mid range, like the lady’s who is asking for advice, we shouldn’t automatically assume that is low, and that her tsh is not reliable, as we could be wrong. From what I have seen on this very helpful and knowledgeable group is that everyone who complains is advised to increase dose to be in upper ranges, which I think is wrong. One size doesn’t fit all, and that is why we all complain about doctors as they also have the same approach. For example, my FT3 was always near bottom but that doesn’t mean it’s low, it’s just simply my “normal”. If I push it let’s say over 3, even if still in referenced mid range it would be too much for me and I won’t feel good. Also, don’t forget that tsh works well for most people, so it shouldn’t be so easily dismissed.
Research has shown that in disease states (ie in most people with thyroid disease) the TSH does not correlate with free T4 and free T3 hormones the same as in health and therefore should not be used as a sole guide for thyroid hormone replacement as it has often been used for in the last 20 years. If the practitioner focuses on TSH alone then replacement thyroid hormone dosages can be incorrect and patients remain unwell.
I’m very sorry you are having health problems and see you have asked for help and been given lots of excellent advice - much of it about issues with TSH testing, all I can do is advise you to keep gaining knowledge and reading up on latest thyroid research and hopefully your knowledge will help you on your road to health.
I agree and that is exactly what I said above, we should look at the whole picture and keep in mind that one approach is not appropriate for everyone as we are all different and respond to treatment differently. That is why so many doctors suck as they treat everyone the same way. Good luck to you as well.
The pituitary gland is not quite the genius you give it credit for. Furthermore, the body's feedback mechanism is not as simple as most endocrinologists believe.
Her ft3 isn’t under, some people can’t tolerate thyroid med replacement very well and it causes bad hyper symptoms if TSh goes under 1.00. I always thought the opposite like you 8 years ago until I had the same symptoms and blood results as her and an endocrinologist that had suffered hypothyroidism herself showed me that my aches and pains and fatigue were because of the t4 medicine itself. I could never handle a free t3 over 3.10 If it did go over that I would feel like I had the flu and could hardly walk or open bottles with my hands because of the weakness it would cause. It would cause a rapid heart rate as well. Took many many years for me to understand it.
Thank you to you all, I am going to do though everything when I get home. I do think that if you do think I’m under medicated there is NO WAY my gp will up my dose, I had to beg her when I was at 3.6! 😫
Also, this one that explains why relying on TSH instead of thyroid hormone levels is a very poor way to treat hypothyroidism: onlinelibrary.wiley.com/doi...
It really is confusing. I have swung hyper at least 40 times in the past 10 years from over medication so when I here someone struggling with your symptoms I always try to let them know that too much thyroid medicine causes me more exhaustion than undermedicated. Over med gives me a physical fatigue in my muscles and undermedicated causes a sedated fatigue like I’m coming out of anesthesia. Not sure if u can relate to that at all
Thank you so much everyone for your replies. It is clearly not straight forward with regards to if i am under or overmedicated? certainly don't feel great, the only symptom i have that could be over medicated is that i am so hungry all the time! Other than that, heart rate still slow, still constipated etc. Will see GP on Thursday, as i said i can not see he agreeing to up my dose
*Can you buy levo yourself?
I have taken your advice, i am now going totally GF, i have reordered by B12 Complex and oral Vit D spray, so will keep going with them and concentrate on eating healthy rather than cutting the calories.
I do really appreciate you all taking the time to respond x
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