Am I 'normal'?

Hello. I'm new to this forum but I've been hypothyroid since 2008. Over the years I have gone from 75mg to 200mg while pregnant and I'm currently at 150mg.

Randomly I used to be anemic and now I'm not but I feel tired as hell (put down to having a 2.5 year old).

I've been at Slimming World for 7 weeks now and where others have lost nearly a stone, I've not even lost half a stone and I am following the plan. I keep reading reports of there being a link between hypothyroidism and weight gain but my consultant is adamant that there isn't and that it only affects my moods.

Which leads me on to my next subject (sorry I have so much I need to get off of my chest) Earlier this year my moods were terrible. Crying pretty much every day and standing on the train platform on my way to work, having images on myself jumping in front of the train ... I did say they were bad. This happened for a few months and thankfully it died off for a while but it came back last week. Not as strong thankfully but in general, I feel emotionally crap at present.

My joints are aching like hell, I'm so tired, sex drive has gone, peed off at SW for not working and I can not stop sweating!!! I walk and I sweat. I sweat after I eat a hot meal. I feel as though I'm going through the menopause. I get in to work in the mornings and I have to wipe myself down where I'm so damn wet. It mainly happens on my face, neck and trunk. I sleep naked in bed and I wake sweating. Its embarrassing.

I have a blood test next Friday to check my levels but at my last blood test (I religiously have them every 6 months) I was on 200mg and I felt wonderful (bar a few palpitations) but I was told that it was too high and so they decreased it to 150mg.

This will probably sounds quite dramatic (if the rest of my post doesn't already) but sometimes I feel as though my heart is going to pack in. It feels as though my heart is really tight sometimes (not my chest but my actual heart) I'm worried that I've done it some damage by over medicating and I occasionally get palpitations out of no where. Sitting down they can come on.

Does any of the above sound 'normal' when being hypothyroid? Or am I just a fat, paranoid, sweaty, hairy, emotional menopausal woman in her mid thirties and this is it for the next few decades ..? :/

Thanks for reading my essay.

Lucy

18 Replies

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  • I keep reading reports of there being a link between hypothyroidism and weight gain but my consultant is adamant that there isn't and that it only affects my moods.

    I think you need a new consultant, or the current one needs to do some revision.

    hypothyroidmom.com/300-hypo...

    Your symptoms sound normal for someone who is hypothyroid, under-medicated, and almost certainly suffering from nutrient deficiencies. The sweating problem suggests you probably have low or high cortisol as well.

    Do you have copies of any blood tests? If you have please post them along with the reference ranges.

    The tests you need are

    TSH

    Free T4

    Free T3

    TPO Ab

    TgAb

    Vitamin B12

    Folate

    Vitamin D

    Ferritin

    When you have your next tests ask for the above to be added. Don't expect to get them all, but getting anything in addition to TSH is worth it.

    When you get your blood tests :

    Don't take levo for 24 hours before the blood draw. Take the missing dose after the test instead.

    Arrange the blood draw for first thing in the morning - before 9am if at all possible.

    Don't eat or drink overnight or in the morning before the blood draw, but water should be drunk freely.

  • Thank you. I always take my meds before bed as I forget otherwise so I take it along with my contraception so Ill make sure that I take it before 8pm as my test is at 8am. I believe that if you take it with milk (which I have for breakfast) then it makes the meds less affected; another reason I take it at night.

    I knew that I was right about the weight issue. Since 2008 I have gone up 3 dress sizes and the only thing that has worked is a complete no carb diet but it simply wasn't sustainable. I thought that by joining SW that I could lose weight sensibly. Do you have any advice regs losing weight or are we destined to always be unhappy?

    I will ask them for the extra tests as I have wondered if I'm lacking in something else. I honestly don't feel well and people are so quick to dismiss it.

    I don't have any results to hand as I always get a call from them but I will most def ask them to print me a copy out next week. I'll give them a call now to make sure that they can take the other tests instead of having to make another appointment. Sadly my surgery isn't that helpful.

    Thank you again. Nice to know that I'm not a complete nutter.

  • Since you take levo at night, on the day before your test don't take levo at all. On the day of the test, take a dose immediately after the blood draw, and then take another dose at night as usual. It won't do any harm at all to miss a day or to double up on the day of the test. Some people take all their levo dose once a week and apparently they cope okay.

    If you get your nutrients and thyroid hormone to optimal levels you might lose weight. I'm not making any promises though. Weight gain on levo is common.

    I don't know if you are aware of this, but it is legal to import thyroid meds (for your own use) from other countries. It is a last resort for most people, but if it makes the difference between living a normal life and living the life of a comatose, brain dead slug then it is worth it.

    But you aren't at that stage yet... There is lots you can try before going that far.

  • taking levo with other hormones is also not a good idea - don't know if it is affected by fake progesterone, but it definitely is by oestrogen. Tea, coffee, calcium, oestrogen all affect absorption.

  • many people find that following a gluten-free, low-ish carb paleo type diet helps. Too much exercise (esp aerobics and jogging) uses up all your T3 and makes you fatter and tireder.

  • One thing that I did forget to mention was that sometimes my bowel opens up to three times a day and other times I don't go for two days. Again, not sure if it's the thyroid or something else.

  • Too little thyroid hormone can have dreadful effects on the gut. Few people have hypothyroidism without some effects on the stomach and bowels. Getting nutrient levels right and meds dose right may help a lot in that respect.

    Many of us feel better on a gluten-free diet, even if we don't necessarily have coeliac disease. I would be worth a try, but it must be done absolutely 100%. It isn't possible to be almost gluten-free. You either are or you aren't.

  • Thank you so much. I've just read through the link and I've had a stillbirth and an early mc and my son (still birth) took nearly 3 years to conceive. We started trying in 2006, I had my thyroid out in March 2008 and fell pregnant Jan 2009. I've always thought there was a link. So many other symptoms sound very familiar too. I will try some of what you've suggested and if not, maybe self medication is the way to go. We shall see. Thanks again.

  • Well I've just spoke to the receptionist again and there's a message on the system from the doctor asking why I want the tests done. I've just gone through my symptoms. Been told to call back in the morning to find out what she has said to that. How much is the online test???

  • I've copied the text below from a post I wrote a couple of days ago :

    There are thyroid tests you can do privately which can be ordered off the internet without the interference of a doctor, nor do you need a doctor's permission.

    bluehorizonmedicals.co.uk/T... (£99)

    bluehorizonmedicals.co.uk/T... (£139)

    The first test package linked above can be done as a microtainer test or a vacutainer test.

    The second test package linked above can only be done as a vacutainer test.

    Microtainer : Finger-prick test. Spring-loaded lancets are sent to you to allow you to prick your fingers. Little vials are sent for the blood to be dripped into.

    Vacutainer : Blood sample required from the crook of the elbow. A nurse or phlebotomist will have to take blood for you. All the equipment required is sent to you.

    Once you have your blood samples they must be packaged up and taken to the post office where you must post the package asking for "Guaranteed Next Day Delivery By 1pm". Since you want the blood to be processed as soon as possible for greatest accuracy, only do blood draws on Monday - Thursday and post the samples as soon as possible. The lab isn't open at the weekend.

    Timing : Take blood samples early in the morning, by 9am at the absolute latest.

    Fasting : Don't eat or drink (except plenty of water) overnight or on the day of the test until after the blood has been taken.

    Taking thyroid meds : Before blood is taken, levo should be left off for 24 hours, any meds containing T3 should be left off for 12 hours.

    Supplements : Avoid these for 24 hours. For iron supplements, some sites e.g. STTM suggest leaving these off for 5 days before testing.

    Whatever you do with regard to timing, fasting, stopping meds and supplements, take note, and be consistent from then on - always do tests the same way.

    Phlebotomy for vacutainer tests :

    People make their own arrangements for this. They may know a friend or relative who will take blood for them.

    Some GPs will allow patients to make appointments with the surgery phlebotomist, either for free or for a price, some won't allow it under any circumstances.

    Some NHS hospital phlebotomy services will take blood for private testing, usually for a fee. The size of the fee varies dramatically. Phone up in advance and ask whether they will do it for you and how much it costs. Remember to take your tubes away with you. If you have a few hospitals near where you live, shop around for the best response.

    There are private phlebotomists, who might come to your house. They are expensive.

    Some private hospitals may take blood for you, for a fee. But some insist that it can only be done if you are seeing one of their doctors, which is what you want to avoid.

    Getting your results : These are returned to you via email.

    thyroiduk.org.uk/tuk/testin...

  • Lots of good advice from everyone

    Just a couple more thoughts

    First....not sure you should take your contraceptive pill at same time. It may be better to take that in morning.

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

    chriskresser.com/the-gluten...

  • Thank you, I'll have to have a look refs my contraceptive as I need to take it at the same time very day. I don't want an accident lol. I've called my doctors to request the other tests and initially they asked why and then said that they would put my request in to the doctor and to call them back to see what she says. I asked what would happen if she says no and she said that she can't see why she wouldn't. We shall see.

    I'll have to have a look into gluten free once I get the results back of my bloods. I think one thing at a time to rule things out but I do bloat with milk and bread quick badly and feel sick afterwards.

    Thank you

  • Maybe you could take the thyroid hormones in the middle of the night if you have to get up,as I do, to amble to the toulet.

  • Lol thankfully I don't need the toilet in the night 🙈

  • LLL, you have been given a lot of very good advice so far, and I can't add much to it... except, Slimming World! It's no secret on here that I am not a fan of SW. And, that is because it is based on a false premise - i.e. low fat. Or even no fat! And, that is bad, bad, bad!

    The body needs fat. It needs cholesterol. Without cholesterol, your sex hormones will be very low - no sex drive? Obviously, you should only be eating good fats - olive oil, coconut oil, avocados... But cutting all the fat off meat? No, that is wrong. Animal fat is one of the good fats. And, eating fat does not make you fat, on the contrary!

    And what alerted me to comment on this is the fact that you've been having suicidal ideas. And that can be due to your low-fat/no-fat diet! Have a look here :

    healthunlocked.com/thyroidu...

    And, whilst your black thoughts could very well be due to low T3 - as is your weight-gain, I hasten to add! - they could also be due, at least in part, to your diet. :(

  • Thank you for your reply :) I had PND a couple of years back and it does stem from that initially but I thought it was under control until the beginning of this year. I've only been on SW for 7 weeks so I don't think it's to do with that.

    I do however agree that some of the advise and syns I have questioned. Nuts and seeds for example are good fats in moderation and yet you are only allowed a table spoon full and even then they are of a high syn value.

    SW promotes carbs and lots of them, they are totally free meaning that I could live off of pasta for the rest of my life and it be fine by the book, but as I said in my original comment, my body hates carbs. And low carb is the only diet that has worked.

    My sex drive in honestly stems from feeling knackered 24/7 and because of my unhappiness with my weight. As crap as I generally feel, I do feel 'healthier' as contradictory as that reads. I eat so much more veg and fruit and my prortions are better controlled but yes, I agree that not all of it sits right with me. But maybe that's why I'm not losing weight lol

    I'm going to get these tests done first and go from there. Hopefully once my levels are correct and enough vitamins are in my body then the rest will follow.

    I'm getting married in 12 months so I've set myself a target date to lose weight. If it doesn't work on SW then at least I can say that I've tried.

  • I think you're over-thinking your symptoms by second-guessing them, and that most of your assumptions are probably wrong. As Ruthi says below, all your symptoms sound like thyroid. There are over 300 symptoms of low thyroid, but I bet doctors know two at most!

    And I very much doubt if everything stemmed from your PND, more likely your PND was a symptom of a disease you already had. Weight-gain, inability to lose, fatigue, low sex-drive, all symptoms of low thyroid. And all should resolve when you get your levels optimised. Slimming World is very unlikely to help you, and could make things worse.

    But, yes, get the tests done, and let's see what's going on. :)

  • All the symptoms you describe (aches and pains, weight gain/failure to lose etc) sound like you are hypothyroid. And since the doctor took a quarter of your levothyroxine away, that isn't really all that surprising! The tests (if he does them all) will tell.

    There is a huge difference between 'in range' and 'optimal' that doctors really do not seem to understand.

    But don't worry, once you have your results, whether from the doctor or Blue Horizon you'll find a wealth of advice here.

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